they were morally inferior (Rubin & Roessler, 1995, Chapter 1). ..... In summary, there are two major societal images for individuals with TBI at present. ...... characterization, named her memory change âmemory blinkâ (personal communication, ...
ABSTRACT
LOSS OF SELF: A NARRATIVE STUDY ON PEOPLE WITH TRAUMATIC BRAIN INJURIES By Masahiro Nochi
This study elucidated the meanings of “loss of self” represented in the self-narratives of people with traumatic brain injuries (TBI). Using a qualitative research method, I conducted participant observations of and interviews with ten TBI survivors. I also used first-hand accounts of other individuals with TBI, drawn from an email Listserve, TBI Support List, as well as from journal articles. Qualitative analysis of the data revealed four interrelated categories of loss of self. The first category is “loss of single self-history.” People with TBI are likely to have two contradictory views of their lives. One view says that the self-history is continuous despite TBI, whereas the other says that it is discontinuous because of TBI. The second category is the “opaque self.” Many TBI survivors have lost clear self-knowledge and are uncertain of what they can do in society and in the future, as well as in their immediate environments. The third category is the “devalued self.” TBI survivors tend to feel that their present selves are valueless when they compare themselves with pre-injury selves in terms of interpersonal relations, job capacities, senses of present time, and future possibilities. The fourth category is the “labeled
self.” People with TBI often sense that society presses upon them negative labels that contradict their own self-images. The data also showed that TBI survivors devised many strategies to overcome their experiences of loss of self. They may clarify their functional changes by describing, explaining, and controlling their opacity. They may restore value of the self by keeping the hope of recovery, by making downward comparisons, and by re-interpreting their TBI experiences. Also, they may negotiate their self-images with society by distinguishing the self from negative connotations of TBI. Thus, loss of self is not a monolithic concept but involves several aspects in the person’s self-narratives, constructed in the person’s interaction with self, environment, and society. For the intervention of loss of self, professionals should attend to self-narratives of people with TBI and underlying interactional processes, and assist them to change those narratives directly or indirectly.
LOSS OF SELF: A NARRATIVE STUDY ON PEOPLE WITH TRAUMATIC BRAIN INJURIES
by MASAHIRO NOCHI B.A. University of Tokyo, 1984 M.A. University of Tokyo, 1986
DISSERTATION
Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Counseling and Human Services in the Graduate School of Syracuse University.
May, 1997
Approved ___________________________ Professor Douglas Biklen Date _______________________________
Loss of Self
Copyright 1997
Masahiro Nochi
All rights Reserved
Loss of Self
TABLE OF CONTENTS Page LIST OF TABLES AND FIGURES --------------------------------------------------------------viii ACKNOWLEDGMENTS --------------------------------------------------------------------------ix
Chapter 1: INTRODUCTION AND BACKGROUND ----------------------------------- 1 Introduction------------------------------------------------------------------------------------ 1 People with Disabilities as Societal Images ---------------------------------------------- 3 - Carrying a Sinful Characteristic, Carrying a Disease -------------------------4 - Being an Independent Individual ------------------------------------------------ 6 - Beyond the Current Images ------------------------------------------------------ 8 Dominant Images of People with TBI ----------------------------------------------------- 10 - Biomedical Views of TBI -------------------------------------------------------- 10 Neuropsychology and TBI rehabilitation ------------------------------- 11 Meanings of the brain in the socio-cultural context ------------------- 14 - People with TBI as Independent Individuals ---------------------------------- 16 Recent development of community-based services ------------------- 17 Dilemma in TBI rehabilitation-------------------------------------------- 19 Attention to the Self of People with TBI -------------------------------------------------- 22 - Counseling People with TBI ----------------------------------------------------- 23 The current status of counseling services in TBI rehabilitation ----- 23 The self as a focus of counseling ---------------------------------------- 24 - The Self and Brain Injury in the Literature ------------------------------------ 25 The self as a static structure ---------------------------------------------- 26 The self as an active agent ------------------------------------------------ 28 Research Questions -------------------------------------------------------------------------- 29 Chapter 2: METHODOLOGY ---------------------------------------------------------------- 31 The Approach to the Understanding Human Beings ------------------------------------ 31 - The Traditional Paradigm of Human Science --------------------------------- 32 A historical overview of traditional frameworks ---------------------- 32 Criticisms of the traditional frameworks ------------------------------- 34 - Seeking an Alternative Paradigm for Human Science ----------------------- 36 The meaning of “understanding” ---------------------------------------- 37 Ideas of symbolic interactionism ---------------------------------------- 40 Qualitative Research Methods ------------------------------------------------------------- 43 - General Characteristics of Qualitative Methods ------------------------------ 43 - Criteria of Research Quality ----------------------------------------------------- 45 “Reliability” ---------------------------------------------------------------- 45 “Internal validity” ---------------------------------------------------------- 46
Loss of Self
“External validity” --------------------------------------------------------- 47 - To Study People with TBI using Qualitative Methods ---------------------- 48 Techniques to get credible data ------------------------------------------ 49 Qualitative research on disability ---------------------------------------- 50 Procedures of Study --------------------------------------------------------------------------51 - Data Sources ----------------------------------------------------------------------- 52 The primary informants --------------------------------------------------- 52 The informants from the electronic discussion group ---------------- 54 The articles on journals and magazines -------------------------------- 57 - Data Collection -------------------------------------------------------------------- 57 - Data Analysis ---------------------------------------------------------------------- 60 Chapter 3: SUMMARIES OF THE INFORMANTS’ NARRATIVES --------------- 63 Ben --------------------------------------------------------------------------------------------- 65 Don --------------------------------------------------------------------------------------------- 66 Ed -----------------------------------------------------------------------------------------------67 Fred ---------------------------------------------------------------------------------------------68 Jack ---------------------------------------------------------------------------------------------69 Karen -------------------------------------------------------------------------------------------70 Lisa --------------------------------------------------------------------------------------------- 71 Norm ------------------------------------------------------------------------------------------- 72 Richard -----------------------------------------------------------------------------------------73 Sam ---------------------------------------------------------------------------------------------74 Chapter 4: LOSS OF THE SINGLE SELF-HISTORY ---------------------------------- 76 Temporary Interruption of the Self-History ---------------------------------------------- 77 - Being Aware of the Self Again -------------------------------------------------- 77 - Reunion of the Past with the Present ------------------------------------------- 79 Filling the “void” ----------------------------------------------------------- 80 Incorporating the “void” into the self-history -------------------------- 81 Near-death experiences ---------------------------------------------------- 83 - Narratives of the Recovered Self ------------------------------------------------ 84 The negative self as a starting point ------------------------------------- 85 Recovery as a directional move ------------------------------------------ 86 Recovery as spatial expansion -------------------------------------------- 87 Recovery as increased control of one’s life -----------------------------88 - The Belief in the Continuous Self ----------------------------------------------- 89 Permanent Interruption of the Self-History ----------------------------------------------- 90 - Changed Memory of the Pre-Injury Life --------------------------------------- 91 Lost memory of the pre-injury days ------------------------------------- 91 Change in appearance of the past ---------------------------------------- 93 - Changed Life Experiences After the Injury ------------------------------------ 94 Facing the stagnation of recovery ---------------------------------------- 95
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Recurring discomfort as a sign of life change -------------------------- 96 - Consequence of the Permanent Interruption of Life -------------------------- 97 Concluding Remarks -------------------------------------------------------------------------99
Chapter 5: THE OPAQUE SELF ------------------------------------------------------------- 100 Phenomenology of the Opaque Self ------------------------------------------------------- 101 - Elusive Nature of the TBI-Related Changes ----------------------------------- 101 “Visible” changes of the experiences ------------------------------------102 Difficulty in categorizing the changes -----------------------------------104 Fluctuation of the changes ------------------------------------------------ 106 Doubts of one’s “reality” -------------------------------------------------- 107 - Two Types of Opacity ------------------------------------------------------------ 108 Opacity as a negative force ----------------------------------------------- 108 Opacity as a positive force ------------------------------------------------ 110 - Expansion of Opacity ------------------------------------------------------------- 112 Opacity of the entire self -------------------------------------------------- 112 Opacity of the environment ----------------------------------------------- 114 Opacity of time ------------------------------------------------------------- 116 Dealing with the Opaque Self ---------------------------------------------------------------117 - Living with Opacity --------------------------------------------------------------- 118 - Giving a Shape to the Opaque Area ---------------------------------------------120 Describing the experiential change -------------------------------------- 120 Explaining the underlying mechanism ---------------------------------- 122 Specifying the conditions of functional changes -----------------------124 - Controlling Opacity --------------------------------------------------------------- 127 Management of the environment ----------------------------------------- 126 Management of the self ----------------------------------------------------128 Development of the support system ------------------------------------- 130 - Consequences of Seeking the Less Opaque Self ------------------------------ 132 Effects of the explanation ------------------------------------------------- 132 Negative aspects of being helped ---------------------------------------- 134 Concluding Remarks -------------------------------------------------------------------------136 Chapter 6: THE DEVALUED SELF --------------------------------------------------------- 138 The Self in Comparison ----------------------------------------------------------------------138 - Various Objects of Comparison ------------------------------------------------- 139 Limited physical and psychological functions ------------------------- 139 Limited job capacities and opportunities ------------------------------- 141 Limited interpersonal relations ------------------------------------------- 143 Changed appearance of time ---------------------------------------------- 145 - Consequences of the Compared Self --------------------------------------------146 Emotional reactions to the changed self ---------------------------------147
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Restrained emotional expressions ----------------------------------------149 Restoring Value of the Self ------------------------------------------------------------------150 - The Hope of Recovery to the Pre-Injury Self ----------------------------------151 Effects of the hope of recovery ------------------------------------------- 151 How to believe in the recovering self ------------------------------------153 Dilemma of keeping the hope ---------------------------------------------154 - The Rhetoric of Downward Comparison ---------------------------------------156 Imagining more negative results of TBI ---------------------------------156 Reframing the pre-injury life ----------------------------------------------159 - Attachment of Positive Value to the Present -----------------------------------161 Concentrating on today ---------------------------------------------------- 162 Modifying the goals of daily efforts ------------------------------------- 163 TBI as a learning experience ----------------------------------------------165 Redefining the present self ------------------------------------------------ 166 Concluding Remarks -------------------------------------------------------------------------168 Chapter 7: THE LABELED SELF ------------------------------------------------------------170 Social Definitions of the Self with TBI ----------------------------------------------------171 - Strong “Me” from Society --------------------------------------------------------171 Powerful professionals -----------------------------------------------------172 Being seen in society -------------------------------------------------------174 - Negative Images Attached to People with TBI --------------------------------176 The image of “abnormality” ---------------------------------------------- 177 The image of “powerlessness” --------------------------------------------179 - Dilemma of “Positive” Terms --------------------------------------------------- 180 “Normality” as a label ----------------------------------------------------- 180 Threat of other labels ------------------------------------------------------ 183 The label of “MTBI” -------------------------------------------------------185 - A Summary of the Labels ---------------------------------------------------------186 Negotiation of the Self-Image ---------------------------------------------------------------190 - Presentation of the “Normal” Self -----------------------------------------------190 Controlling information about the self ---------------------------------- 191 Strategic presentation of functional changes --------------------------- 192 Modifying the meaning of “normality” --------------------------------- 193 - Utilization of the Term “TBI” --------------------------------------------------- 194 Stressing the word “brain” ------------------------------------------------ 195 Stressing the words “traumatic” and “injury” -------------------------- 197 - Distinction of the Self from TBI -------------------------------------------------198 Distancing from the concept of TBI ------------------------------------- 199 Replacing the term --------------------------------------------------------- 200 - Development of the Sense of Being Accepted -------------------------------- 201 Finding the “audience” ---------------------------------------------------- 202 Accepted as a whole person ---------------------------------------------- 204
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Concluding Remarks -------------------------------------------------------------------------206 Chapter 8: DISCUSSION AND IMPLICATIONS ---------------------------------------- 208 The Notion of “Loss of Self” --------------------------------------------------------------- 208 - The Internal Structure of Loss of Self ------------------------------------------ 209 Relationship among the categories -------------------------------------- 209 Common features of loss of self ----------------------------------------- 211 - Loss of Self in the Literature on Brain Injury --------------------------------- 214 Other TBI survivors ------------------------------------------------------- 214 Stroke survivors ------------------------------------------------------------ 216 - Loss of Self Among Other Populations ---------------------------------------- 217 People with physical, chronic illnesses --------------------------------- 218 People with mental illnesses --------------------------------------------- 220 Self and Brain ---------------------------------------------------------------------------------222 - Meanings of TBI to the Self ------------------------------------------------------222 TBI as a desirable notion -------------------------------------------------- 223 TBI as a negative notion ---------------------------------------------------225 - Self and the Theories of the Brain ---------------------------------------------- 227 The localization paradigm ------------------------------------------------ 227 The holistic paradigm ----------------------------------------------------- 229 The mind-brain dualism -------------------------------------------------- 231 Suggestions for Rehabilitation Practice --------------------------------------------------- 233 - How to Approach Loss of Self -------------------------------------------------- 234 Uniqueness and commonality of loss of self --------------------------- 234 Functions of the typology of loss of self -------------------------------- 236 - Narrative as a Means of Intervention ------------------------------------------- 238 Direct intervention --------------------------------------------------------- 239 Indirect intervention ------------------------------------------------------- 241 Conclusion -------------------------------------------------------------------------------------245
APPENDIX --------------------------------------------------------------------------------------------249 REFERENCES ---------------------------------------------------------------------------------------257
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LIST OF TABLES AND FIGURES
Table
Page
1. Background of the Primary Informants --------------------------------------------------- 53 2. Background of the Informants from the Discussion Group ---------------------------- 56
Figure 1. The Labels Attached to Individuals with TBI: Their Locations on a Hypothetical, Two-Dimensional Space --------------------------187 2. Directions of Societal Images for Individuals with TBI ---------------------------------189
Loss of Self
ACKNOWLEDGMENT
I would like to extend my appreciation to my informants with traumatic brain injuries (TBI), who shared their experiences with me for this study. Besides providing valuable data, many of them constantly supported and encouraged me until I finished this work. I would really like to list all of their names here not as just informants but as co-authors. Special thanks are also extended to other people with TBI, family members, and professionals in this community. They accepted as a community member this foreign student who could not speak English well. To my dissertation committee chair Douglas Biklen and committee members Sari Biklen and James Bellini, thank you very much for your suggestions, encouragement, and editing prowess. I am also indebted to other faculty members in the Rehabilitation Counseling Program in Syracuse University, including Paul Salomone, Steve Murphy, and Ken Reagles, for helping my doctoral work. Thanks also go to the secretaries of Department of Counseling and Human Services, Wanda Stetson and Sharon Lord, for their assistance in transcribing the interview tapes and handling other procedural matters. Friendship provided by my friends in Syracuse and in Japan are gratefully acknowledged, too. Finally, I am most grateful to my parents, who have mentally and financially supported me for a long time.
1 Introduction
Chapter 1
INTRODUCTION AND BACKGROUND
Introduction This study intends to elucidate the meanings of “loss of self” in the narratives that people with traumatic brain injuries construct while understanding and presenting themselves in their everyday lives. Traumatic brain injury (TBI), which is sometimes called “head injury,” is defined as “an injury to the brain from an external physical force” (Falvo, 1991, p. 182). Recently, the number of people with TBI has increased as advanced medical technology allowed more people to survive. Every year, 80,000 - 85,000 people in the United States suffer TBI due mainly to traffic accidents, falls, and violent crimes (Kraus & Sorenson, 1994). The majority of them are between the ages of 16 and 25, and so their longevity is considerable. They are expected to come across many issues in their lives, involving education, employment, and community living, for example. These issues provide a major challenge to society as well as the survivors themselves. Currently, not only family members but also many people in communities are confronted with such questions as how they can understand, assist, and live with individuals who have TBI. Complexity of TBI symptoms makes it more difficult to give simple answers to these questions. The symptoms after brain injury are varied depending upon its location and size (e.g.,
2 Introduction Heilman & Valenstein, 1993; Ostwald, 1989). People with TBI generally have diffuse damage in two or more locations of the brain. Consequently, they sustain complex combinations of the symptoms, including physical, sensory, cognitive, and emotional changes. Moreover, many other factors, such as pre-morbid personality, educational levels, and available resources, make the functional changes after TBI more varied. It is said that no two individuals ever experience precisely the same combination of the functional changes. These functional changes also bring many challenges in the lives of people with TBI and their families (Crisp, 1992; Kaplan, 1993). Rehabilitation professionals are beginning to assist people with TBI who live in the community by using the concepts and methods developed in the field of neuropsychology. Neuropsychology, which is concerned with a physiological basis of human behavior, has supplied a detailed classification system of brain pathology and its manifestations, as well as the rehabilitation techniques (Lezak, 1995; Meier, Benton, & Diller, 1987). When I worked as a speech/cognitive therapist, for example, I used the neuropsychological framework in my ordinary practice; I assessed and categorized behavioral characteristics of patients with brain injuries while using such phrases as “short-term memory problems” and “emotional instability caused by brain pathology.” Although I worked mainly in medical institutions, the neuropsychological framework also plays a crucial role in community-based rehabilitation services (Kreutzer & Wehman, 1990; Ylvisaker & Gobble, 1987). However, use of the neuropsychological framework may not be appropriate in understanding people as a whole. When one views people through that framework, they were categorized based on an outside standard and reduced to brain pathology. Vendler (1984) criticized such a reductionistic approach to understand people. This approach might be useful in knowing the causes of people’s behaviors, but it is different from understanding the reasons of
3 Introduction their actions. Hitchcock (1986) also suggested that such a quantitative approach as neuropsychological framework may be insufficient to provide psychological support. As an alternative approach, she proposed “a qualitative mode of understanding,” which meant understanding people as unique individuals by focusing on their subjective experiences. People may construct varied narratives on the world and different interpretations of an apparently same event. As Berger and Luckmann (1967) suggested, people live in different realities. In this study, by using a qualitative research method, I investigated the realities in which people with TBI live. More specifically, I examined their self-narratives and explored the meanings of “loss of self” that they were reported to experience after sustaining TBI. TBI is not like a simple, visible wound, like an injury on the leg, for instance. Given such a unique injury, how do people make sense of themselves and their TBI? What difficulties do they face in understanding themselves? How can they overcome these difficulties in their lives? This study tried to answer these questions and to develop a deeper understanding of people with TBI. Based on the findings, I also discussed the theoretical and practical implications to improve the current TBI rehabilitation practice. People with Disabilities as Societal Images Before I start to present my research, I would like to review the relevant literature concerning the topics of people with TBI and their self-concepts. The following sections will allow readers to understand the backdrops of this study as well as its significance. I will begin by providing a brief history about the societal image of people with disabilities to discuss a broader context in which people with TBI live. Studies on disability have revealed that society and culture carry many images of individuals with disabilities (Rubin & Roessler, 1995; Whyte & Ingstad, 1995). People in society use a “normative” image in interacting with individuals who
4 Introduction sustain disabilities, and these individuals usually understand themselves through the same image. Historically, societal images of people with disabilities included those of carrying a sinful characteristic or a disease. The present society, on the other hand, has come to represent them as independent individuals although the previous images still linger on. Carrying a Sinful Characteristic, Carrying a Disease From ancient times, society regarded as “deviants” people who were different in physical or behavioral characteristics, or people with disabilities in the modern term. During the middle ages, for instance, society viewed them from a religious viewpoint and interpreted them as punished by God for their sins or as possessed by a demon. The dominant image of people with deviant characteristics at the time was that of carrying a sinful characteristic, which showed that they were morally inferior (Rubin & Roessler, 1995, Chapter 1). Society rejected them from ordinary social interactions or, at most, treated them as objects of mercy and charity Because of this negative image. Even though they were permitted to live among “normal” people at times, society was likely to exclude them from the mainstream social activities (Whyte & Ingstad, 1995). As many people with deviant characteristics did not have a voice to actively define themselves, there was no choice for them but to accept the stigmatized images given by the society. In the 19th century, society adopted another normative image for people with deviant characteristics, which reflected the biomedical view of human beings. Developed medical science in those days discovered that bacteria or viruses inside the person caused many diseases. Accordingly, society began to regard deviant characteristics not as a result of a sin but as something like diseases, namely, dysfunction of the organism (Conrad, 1992; Conrad & Schneider, 1992, Chapter 10). People who were deviant in their physical and behavioral
5 Introduction characteristics did not carry sins or demons any more. Instead, they came to hold a lack or abnormality inside them as ill persons. When they were viewed from this biomedical viewpoint, in a sense, they “became” people with dis-abilities, namely, lack of ability, for the first time. For a person with a disease, society prepared a set of expectations concerning his or her behavior, which Talcott Parsons (1951) called a “sick role.” Thus, the person was expected to see a medical professional for diagnosis and treatment of the lack or abnormality. Moreover, the person was supposed to obediently follow the professional’s directions while being exempted from social duties and responsibilities (Levine & Kozloff, 1978; Meleis, 1988). Those who were ill for a short period might not find many problems in this sick role. Because people with disabilities were difficult to cure, however, they had to play a permanent sick role, as it were. Gliedman and Roth (1980) named it a “handicapped role,” which was characterized as helpless, dependent, and passive. Also, many individuals labeled “mentally ill” or “retarded” were even segregated from society and confined in institutions under the pretext of “treatment” (Rothman, 1971; Rubin & Roessler, 1995). Though society in the 19th century came to define people with disabilities from a biomedical point of view, it remained to attach to them a stigma of carrying inferior characteristics. Furthermore, society “educated” people with disabilities so that they relied on the given negative image to understand and present themselves. They, thus, internalized the expectations implied in that image and came to behave accordingly. Professionals in mental hospitals, for instance, punished and “straightened” an inmate if his or her behavior did not meet the image of mentally ill people (Goffman, 1961). Outside the institution, as well, people with disabilities needed to learn “appropriate” behaviors while satisfying the professionals’ expectations. They had no other choices if they wanted to survive and benefit from the rehabilitation services
6 Introduction (Holms & Karst, 1990; R. Scott, 1969). When they behaved as society expected, the negative societal images of people with disabilities were maintained and even intensified. Being an Independent Individual The disability rights movement in the 1970s brought a new image of people with disabilities by adopting the socio-political viewpoint instead of the medical one. Under the influence of the civil rights movement in the 60s, the disability rights movement protested against the previous cultural definitions applied to individuals with disabilities. The activists of the disability rights movement insisted that individuals with disabilities were, just like people without disabilities, the holders of human rights and/or civil rights (DeJong, 1979; Pfeiffer, 1993). Thus, they were, as holders of human rights, independent and reasonable beings who could control their actions and properties on their responsibilities. Also, as they held civil rights, the nation or the state was supposed to secure a “normal” life for them (Wellman, 1985). They were no more carriers of a disease who had to retreat themselves from mainstream social activities. In the disability rights movement, people with disabilities actively attempted to create a new image of the independent individual for themselves. The newly developed image brought an alternative set of expectations to people with disabilities while providing a new framework through which to understand and present themselves. This image was involved with such characteristics as being independent, autonomous, and self-directed, of which they had been deprived for a long time. They were not passive recipients of social services or charity under the control of medical professionals any more; they were rather active agents in choosing necessary services for themselves (DeJong, 1979; Nosek, 1987). They also rejected the idea that they were like patients who suffered diseases, and they instead compared themselves with socially disadvantaged groups, such as
7 Introduction blacks and women (Hahn, 1990). They maintained that their difficulties did not come from their disabilities, which were just neutral characteristics like a skin color or an eye color. The difficulties were actually caused by social and environmental barriers, and people with disabilities could petition the society to remove them. Society responded to the new image of people with disabilities and tried to protect their civil and human rights. The Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 (ADA) were two major achievements in disability policies (Pfeiffer, 1993; Rubin & Roessler, 1995, Chapter 2). These laws, especially the ADA, prescribed that people with disabilities are not discriminated against the grounds of disability in employment, transportation, access to public facilities, and communication. Also, the laws allowed people with disabilities to request reasonable accommodations or to protest against discriminatory treatment. In this way, society began to develop a new social norm about people with disabilities, based on their images that were presented by and for themselves in the disability rights movement. Meanwhile, rehabilitation professionals also started to accept the idea that people with disabilities live, or should live, a normal life in a community just like able-bodied individuals. This idea represented the essential feature of the “independent living” or “normalization,” which was becoming the background philosophy of current rehabilitation practice (DeJong, 1979; Nosek, 1987; Wolfensberger & Tullman, 1982). Thus, professionals paid more attention to environmental conditions that were likely to result in difficulties for people with disabilities who lived in the community. Advocacy became an important part of their work to remove architectural barriers or negative societal attitudes toward people with disabilities. The focus of the services was shifting from short-term, medical care to long-term, community-based services
8 Introduction (Akridge, 1986; Stevens, Curl, & Rule, 1993). In addition, many rehabilitation professionals began to believe that relationship between professionals and people with disabilities should be changed (DeJong, 1979; Rubenfeld, 1988). It used to be compared to the one between physicians and patients; professionals were believed to know better what people with disabilities should do. In more recent rehabilitation services, however, it was assumed that people with disabilities knew better what they needed for their lives than professionals. If this is the case, professionals cannot simply give directions to their service-recipients any more. Rather, they should more respect the self-determination of people with disabilities in delivering the services. As Akridge (1986) suggested, professionals should be partners of people with disabilities in community-based services. This change in the professionals’ attitudes also reflected the emergence of the new image of people with disabilities as being independent individuals. Beyond the Current Images At present, it seems that the image of people with disabilities as independent individuals is gradually becoming influential in this society as well as in current rehabilitation practice. One should keep in mind, however, that people with disabilities are not completely satisfied with the present image but are beginning to look for an alternative image for themselves. Certainly, the emphasis on the value of independence and individualism was instrumental in overcoming the old conception that people with disabilities were powerless and dependent. Yet this value does not represent the ultimate value that people must pursue blindly. Anything like the ultimate value would not exist. As the traditional image of people with disabilities is a stereotype, so the new image can be just another stereotype (S. D. Watson, 1993). Any value may become a burden to
9 Introduction people with disabilities if it is enshrined and pressed upon them. People are becoming aware that independence and individualism are not universal values. Social thinkers pointed out that they were produced in a historical context specific to Europe and the United States. According to B. S. Turner (1986), the concept of an independent individual was created under the influence of the Protestant idea, which said that each person has liberty in interior conscience. The division of labor accompanied by capitalism also contributed to the development of that concept. Since then, an independent individual has been considered the unit constituting the society in Western countries, especially in the United States. Some non-Western societies, in contrast, attach less importance to independence of the individual than to harmony of the group and relatedness among people (Markus & Kitayama, 1991; Pedersen, 1989). As multiculturalism becomes more important in the American society, non-traditional values should not be disregarded in constructing an ideal image for people with disabilities. In fact, the concept of an independent individual does not always serve people’s wellbeing in the Western world as well. Bellah, Madsen, Sullivan, Swidler, and Tipton (1985) demonstrated, for instance, that American individualism conflicted with public, communal life, which could be a more important source of satisfaction for people in the society. Nelkin (1983) also pointed out that individualism actually intertwined with the biomedical views of human beings. Thus, one can reduce human behavior to individual biology because of the notion of individual. Although the biomedical view and individualism are sometimes considered to oppose each other, this may not be the case. More recently, some theorists suggested that people should make more of collective values or relatedness because no one could or did live in a completely independent way (Gergen, 1991; Hermans, Kempen, & van Loon, 1992; Hewitt, 1997). Similar discussion is starting in the field of rehabilitation as well (Hillyer, 1991; Kerr &
10 Introduction Meyerson, 1987; Mathews & Seekins, 1987). For instance, Kerr & Meyerson (1987) stated that independence as a goal of rehabilitation might eventually affect the sense of satisfaction or happiness of people with disabilities in negative ways. When an individual attaches too much importance to solitary accomplishment gained without any assistance from other people, he or she may come to disregard cooperation with others. Kerr and Meyerson classified the form of interpersonal relations into the dependent, interdependent, dependable, and independent ones. They then suggested that people with disabilities could be flexible in making a choice from these forms while recognizing merits especially in dependent and dependable relations. Their opinion is not a final conclusion about an alternative image of people with disabilities. However, one should be cautious in evaluating every rehabilitation practice on the basis of the idea of an independent individual. Dominant Images for People with TBI As society provides some “normative” images for people with disabilities, so it prepares images for individuals with TBI. The images applied to individuals with TBI may be similar to those given to people with disabilities in general, but they also have some unique features. For one thing, people with TBI are primarily represented as biomedical entities since “TBI,” a term that signifies a biological condition, categorizes them. For another, newly developed rehabilitation programs for TBI rely on the image of independent individuals. People with TBI in this society, thus, receive two sets of expectations associated with these societal images. I will clarify these two sets of dominant, societal images in this section and discuss a dilemma that they may be causing in TBI rehabilitation. Biomedical Views of TBI It seems that people with TBI are still under the strong influence of a biomedical
11 Introduction framework, in which they are considered to carry a disease or a defect inside them. Certainly, their brains suffer injuries that are usually proved by way of computerized imaging techniques. It may be natural that one tends to characterize people with TBI in biomedical terms as they are categorized on the basis of existence of a brain injury. But one cannot attribute the dominance of the biomedical framework only to that micro-level factor. There seem to be additional, contextual factors. First, advances of medical and neuropsychological knowledge have, at least partly, allowed the development of TBI rehabilitation. Secondly, the general public in this society share a common belief about the brain, which says that the brain is a biological expression of the self or mind. These two contexts may also support the biomedical framework in TBI rehabilitation. Neuropsychology and TBI rehabilitation. As I mentioned in the introduction, people with TBI can sustain a complex combination of physical, sensory, cognitive, and emotional changes. Among these changes, cognitive and emotional ones are particularly serious barriers to the individual’s improvement in rehabilitation and, as a result, to his or her return to home and work (Lam, Priddy, & Johnson, 1991; Kaplan, 1993). Cognitive changes mean dysfunction in one’s mental process through which one takes in information, processes it, and produces a response to it. What comes under this category is the changes in attention and concentration, initiation and goal formation, judgment and perception, learning and memory, speed of information processing, and communication (Brooks, 1990). Emotional change includes anxiety, depression, and aggressiveness, and is often involved with marked, behavioral and personality changes (M. Rosenthal & Bond, 1990). One of the significant forces that has advanced TBI rehabilitation is development in medical and neuropsychological knowledge of TBI symptoms (Giles, 1994; Boake, 1991). Until
12 Introduction recently, rehabilitation professionals did not know how to handle complex symptoms presented by individuals with TBI. The traditional models of physical or psychiatric rehabilitation services did not work for the TBI population because they failed to adequately consider the cognitive and emotional changes (Prigatano, 1987; McMahon & Fraser, 1988). The TBI population was even excluded from rehabilitation services from time to time because professionals believed that rehabilitation services were unlikely to improve TBI symptoms. Only during the last few decades, professional knowledge and technology developed so that professionals could treat, or try to treat, functional changes after brain injury. It is neuropsychology that has played an important role in describing and explaining TBIrelated, functional changes. Neuropsychology is a field of study within psychology and neuroscience. It aims to formulate the relation between brain and behavior through systematic observations of people with brain injuries and through experimentation with animals (Kolb & Whishaw, 1990). Neuropsychologists assume that basic functions of human beings are localized on the areas of the brain even though these areas constantly interact with each other. On the ground of this assumption, they have made a map of the brain functions, which makes it possible to connect functional changes after brain injuries with brain pathology (Damasio & Damasio, 1989). It also provides diagnostic information while allowing professionals to distinguish neurological symptoms from psychiatric ones (Lezak, 1995). In addition, neuropsychology has contributed to rehabilitation practice by explaining a cognitive change as a sequence of cause and effect (Diller, 1987; Lezak, 1995; Osmon, 1987). Borrowing concepts from cognitive psychology, neuropsychologists analyze cognitive deficits of people with brain damage. Thus, they divide the cognitive function into smaller components to identify an affected one as the cause of the deficit. When they successfully identify it, they could
13 Introduction come to treat the deficit more effectively; they may be able to remediate that component, provide an outside aid for it, or teach a skill to evade using it. Also, when the deficit is described quantitatively, clinicians could compare the person’s performance with the norms. This means that rehabilitation professionals can easily monitor the improvement of their clients with brain damage. In fact, professionals’ attempts at improving functional changes of people with brain damage are beginning to produce positive outcomes. This is conspicuous particularly in the areas of memory and attention (Levin, 1992; McGlynn, 1990). The neuropsychological framework provides specific images of human beings that may influence the professionals’ approach to individuals with TBI. One image represents human beings as “biological machines”; every action and experience of the person is mechanically controlled and enabled by his or her brain (E. Miller, 1980). This image may make it easier to consider behaviors after brain injuries to be consequences of the brain pathology. Similarly, human beings are represeented as “information processing machines” in another image. They are like computers in which a large amount of information constantly flows among its processing components. This image also backs up the traditional, biomedical view of human beings. Terms of information processing are similar to biological terms in that both are used to describe human beings and their behavior as a mechanism. These images of human beings provided by neuropsychology reduce the person’s “self” or “will” to biology or a mechanism. The “self” is viewed as a group of higher-level functions through which one is aware of and controls other cognitive functions. It is often called “executive function,” or “meta-cognition,” which means the capacity to direct activities, such as formulating a goal, making a plan to reach the goal, and monitoring one’s behavior (Lezak, 1995; Stuss, 1991). Disorder of this capacity may cause amotivational states when the person
14 Introduction cannot formulate a goal, or it may cause “denial” of disability when the person cannot monitor his or her own behavior. Moreover, if the individual with TBI mentions an unrealistic prospect about his or her future, neuropsychologists may interpret the individual as suffering an inability for self-determination or autonomy. Meanings of the brain in the socio-cultural context. The neuropsychological framework to understand human beings is consistent with the common knowledge in contemporary Western society. Psychologists as well as the general public believe that the brain constitutes a biological expression of the person’s identity. Because people in the present society share this idea of causal relationship between brain and mind, they can easily accept the neuropsychological framework to understand individuals with TBI. In cultural discourses, the brain is a metaphor or an equivalent of the person or his or her mind. Popular magazines constantly reproduce this idea. An article in Time, for example, described the brain as “the window of mind” (“The window of mind,” 1990). Also, in an article in Discover, the “mechanic of the mind” meant the mechanic of the brain (Dobkin, 1990). Furthermore, the brain defines the person’s “personhood” by providing a standard to determine if the person is alive or dead (Moussa & Shannon, 1992; Walker, 1985). The recent argument about brain death, for example, suggests that “real” death of the person is the death of his or her brain. In other words, when the brain activity stops, the person is supposed to be dead even if respiration or cardiac activity is still going on. Some people also insist that the brain activity should be a criterion of the life of a fetus (Goldenring, 1985). They argue against abortion, believing that a fetus is already a person as its brain begins functioning. Within this cultural climate, people come to have a common belief that the brain is the biological expression of the essential part of the self. Research shows that children learn this idea
15 Introduction by adolescence (C. N. Johnson, 1990; C. N. Johnson & Wellman, 1982). When they were asked what would happen if their brains were replaced with another person’s, most of the adolescents answered that they would be different persons. They could not directly see or touch their own brains. However, they accepted as self-evident that their brains represented their identity. This belief is so common in this society that people can easily regard the brain injury as a defect in an essential part of the person. People also tend to attribute “abnormal” behavior to “abnormal” brain functioning. Certainly, this belief about the brain is grounded upon the findings of medical science that show some “abnormal” behaviors correspond to “abnormal” brain activities. For instance, scientists in the 19th century discovered that an epileptic seizure resulted from excessive electrical discharges in some parts of the brain. This discovery released people with epilepsy from a superstition that a seizure was a sign of being possessed by a demon (Schneider & Conrad, 1983; Temkin, 1971). Contemporary scientists believe that other mental disorders, such as manic-depressive disorder and schizophrenia, are also the results of excess or deficiency of some types of brain chemicals (Hollandsworth, 1990; D. L. Johnson, 1989). Moreover, they continuously try to find brain dysfunction that results in “problems” found among children, such as autism, dyslexia, and learning disabilities (Dawson, 1989; Galaburda, 1993). The notion of causal relationship between brain and behavior constitutes a basis behind medical technology to control or eliminate “problematic” behavior. Thus, medical professionals have tried to manage the person’s “problems” by manipulating his or her brain. One typical example is medications to control seizures, which rather successfully suppresses abnormal electrical discharges of the brain (Schneider & Conrad, 1983; Temkin, 1971). Whereas medications for seizures are widely accepted, psychosurgery, which carries the same
16 Introduction presumption about brain-behavior relations, is still controversial (Rappaport, 1992; Snaith, 1994). In psychosurgery, medical professionals induce lesions of the brain to control the symptoms of severe mental illnesses. This technique may be able to reduce “abnormal” behaviors of the person, but it can also result in serious side-effects, such as loss of motivation and a loss of abstract thinking. Psychosurgery is still applied to severe depression and obsessivecompulsive disorders even though medical professionals are using this technique much more carefully than before. The relationship between brain and behavior or mind may not be so simple even though the society basically accepts the idea of their causal relationship. Philosophers have argued about that relationship for centuries without a consensus (e.g., Warner, 1994). It is certain that many studies have shown their correspondence between brain and behavior or mind, but the correspondence is not necessarily a causal relation (Nagel, 1994). Also, Husserl (1954/1970) suggested that the idea of causal relationship between them is mainly a product of the modern Western world. It seems that there is still a large gap between the material activities of one’s brain and one’s conscious experiences. One might as well put in a parenthesis the common notion of brain-behavior relationship in understanding people with brain injuries. People with TBI as Independent Individuals Advances of medical and neuropsychological knowledge are certainly a critical force for the development of TBI rehabilitation. However, the new image of people with disabilities, which was inspired in the disability rights movement, also influences current rehabilitation practice. A consumer group named the National Head Injury Foundation (now called the Brain Injury Association) has promoted this image for people with TBI as well. Families of people with TBI founded this consumer group in 1980, and it has contributed since then to the public
17 Introduction awareness of the service needs of people with TBI (Horn, 1990). As research has revealed, many people with TBI are far from the image of being autonomous and independent. Their lives are often characterized by disproportionally high unemployment and lack of social and recreational opportunities (Crisp, 1992; Kaplan, 1993). Rehabilitation professionals are now attempting to modifying TBI rehabilitation so that people with TBI can be more independent or more autonomous. Recent development of community-based services. TBI rehabilitation programs are beginning to adopt the ideas of independent living and normalization for their philosophy (Condeluci, Cooperman, & Seif, 1987; Condeluci & Gretz-Lasky, 1987). Some professionals are designing long-term, community-based service options so that people with TBI can perform various roles in the community as independent individuals. It seems that these professionals are trying to apply the new societal image of people with disabilities to the TBI population and to use it for the improvement of TBI rehabilitation. Transitional living programs are possible services immediately after medical rehabilitation. These are designed to help people with TBI to acquire practical skills so that they can live in more independent settings (Boake, 1990; McMahon & Fraser, 1988). The transition to more independent settings may be from a hospital to a family home, or from a family home to a supervised apartment. In such programs, people can learn daily living skills, such as memory, communicative, and interpersonal skills. They practice the skills in everyday tasks, such as daily chores at home, money management, and transportation in town. Professionals sometimes use a technique of behavioral modification for skill-building. While people with TBI often have difficulty in generalizing acquired skills beyond training situations, this community-like setting allows them to apply acquired skills to their lives more easily (Leland, Lewis, Hinman, &
18 Introduction Carrillo, 1988). Brain injury associations in several states are in the processes of developing services through which they can give more direct assistance to people with TBI in the community. Not all the survivors can return to their pre-accident living environments even after training in the transitional living programs. Some may still need more support than they can receive from their families, and some may choose not to be supported by their families. In the supervised independent living programs, people with TBI can live in the community for a certain period while being assisted by the program staff (McMahon & Fraser, 1988; Uomoto & McLean, 1989). Attendant services or homecare services is another option when the survivors try to live independently in a community (Condeluci, et al., 1987). They can obtain assistance in personal care, such as dressing and bathing, or in household chores, such as cooking and shopping. Vocational rehabilitation services for people with TBI are also a developing field. For one thing, assessment of people with TBI is becoming more comprehensive and sophisticated for job placement (Fraser, 1991; D. F. Thomas, 1989). Their functional changes, including cognitive and behavioral ones, are evaluated in detail with neuropsychological tests and behavioral analysis. Professionals carefully assess the assets of their service-recipients as well, so that they can use that information for the job training. Vocational assessment is administered in actual job settings. Test performances of people with TBI in laboratory settings are often different from their capabilities in actual work settings (Fraser, 1991). The on-site assessment enables professionals to predict their service-recipients’ future performances more accurately. Furthermore, professionals are trying to remove barriers in the work place that interfere with the job performance of people with TBI. Several strategies have been developed to modify the work environment so that people can make up for not only their physical changes but also their
19 Introduction cognitive changes (Mallik, 1990; Sachs & Redd, 1993). Supported employment is another emerging array of vocational services, especially for people with severe TBI. It is defined as “paid employment for persons with severe disabilities who require ongoing (long-term) support to sustain employment, offered in settings that provide integration with persons without disabilities who are not paid care-givers” (Szymanski, Buckley, Parent, Parker, & Westbrook, 1988, p. 112). In these services, people can learn job-related skills in an actual work place, so they can more easily overcome cognitive challenges that make the skill transfer difficult. The services are usually provided in a competitive employment situation, so people can secure a certain level of wages as well as an opportunity to interact with nondisabled co-workers. Preliminary research showed that supported employment increases the job retention of people with TBI (Ellerd, Moore, Speer, & Lackey, 1994; Wehman, Kreutzer, Wood, Morton, & Sherron, 1988). Dilemma in TBI rehabilitation. The service programs mentioned above mostly reflect the professional efforts to respect the independence and self-determination of people with TBI. It seems, however, that some features of the services are more in accord with the biomedical views of them. No doubt, rehabilitation professionals have added these features to the programs to deal with TBI-related changes that may need supervision. For instance, some individuals with TBI may show “dysfunctional” behavior, such as refusing to take medication or abusing illegal drugs. This is a possible consequence of the poor judgment that accompanies brain pathology (P. Evans, Haffey, & Cope, 1990). Also, some people with TBI may persist in returning to their previous jobs even if they lack the necessary skills. Professionals may call this “denial” or “unrealistic expectation” (Armstrong, 1991; Zuger & Boehm, 1993). These and other specific characteristics of people with TBI may oblige professionals to
20 Introduction include the program features that allow professional dominance. First, a “comprehensive” assessment, which is considered a crucial part of TBI rehabilitation, is a double-edged sword. It is called “comprehensive” because it clarifies the person’s functional changes as well as residual capacities (G. Goldstein, 1987; Lezak, 1995), but its comprehensiveness may induce professionals to consider people with TBI just biomedical entities. Neuropsychological tests, which comprise a major portion of the comprehensive assessment, describe a person as a set of cognitive functions while pointing out the disordered components. As I discussed earlier, these tests postulate that even the person’s will or intention is one cognitive capacity to be objectified. Professionals also use behavioral analysis as one part of the comprehensive assessment, which describes the person’s behavior in relation to environmental conditions (G. Goldstein, 1987; Horton & Sauter, 1986). As the assessment involves evaluating not only the person’s weakness but also his or her assets, the person is reduced to a group of factors that are component cognitive functions and environmental contingencies. Just as a physician diagnoses a disease, rehabilitation professionals are allowed to judge which factor is problematic. They may look upon each of their clients as a unique individual, but that uniqueness comes from a combination of objectivist variables, not from the autonomous nature of the individual. Second, many community-based programs incorporate behavior modification techniques to manage the “problems” of people with TBI (Boake, 1990; McMahon & Fraser, 1988). Results of the behavioral analysis provide a basis for the techniques. Behavior modification may be sometimes effective in changing the “problematic” or “dysfunctional” behaviors of people with TBI. When these techniques are applied, however, the person has to yield his or her agency to an outside power who judges his or her behavior and reinforces “good” behaviors. Then, the person may get more accustomed to relying on other people’s direction, not on his or her own intrinsic
21 Introduction motivation (Deci & Ryan, 1980; Guess & Siegel-Causey, 1985). Third, many community-based programs adopt the principle of “least restrictive environment,” which may allow professional dominance in the services again. For instance, professionals postulate a continuum of residential conditions such as an institution, full-time supervision, a group home, part-time supervision, monitoring, and independent living (Boake, 1990; Condeluci et al., 1987). A similar continuum is established in vocational services as well (Fraser, Clemmons, & McMahon, 1990; McCue, 1992). A person with TBI is supposed to get assistance to achieve the least restrictive environment appropriate to his or her capacities. As Taylor (1988) argued, however, it is often professionals who decide which environment is the least restrictive for each person, and their decision is not usually based on the person’s “want” or perceived needs. Fourth, there are not many options to choose from in the current community-based programs aimed specifically at people with severe TBI. Olney and Salomone (1992) pointed out that supported employment services only have a small number of job choices for people with severe disabilities. It seems that the effort of increasing service options has just begun even in community-based rehabilitation in general (Stevens et al., 1993). This is true of TBI rehabilitation as well. When there is no choice, it is obvious that people cannot exercise their autonomy. They are just obliged to choose the option available to them at the time. These features of TBI rehabilitation programs reflect professionals’ doubts about the capacity of people with TBI to be autonomous and independent. Even theorists who advocate the idea of independent living or normalization hesitate to apply it to the TBI population as a whole. They suspect that not all people with TBI could appropriately choose services that are necessary for them because of their cognitive changes (Condeluci et al., 1987; DeJong, Batavia, &
22 Introduction Williams, 1990). This means that people with TBI might need professional direction from the outside and that, from an objectivist viewpoint, professionals should judge who needs such direction and who does not. In TBI rehabilitation programs, thus, people with TBI are under the supervision of professionals, in spite of the ideal of independent living. In summary, there are two major societal images for individuals with TBI at present. One is the image of biomedical entities that have a lack or a defect inside them, and the other is the image of independent individuals who have rights to live “normal” lives in the community. The former image is still influential enough to erode the latter image in TBI rehabilitation. The conflict between the biomedical image and the independent or autonomous image may be an issue in all rehabilitation services. However, it seems that the conflict manifests itself more dramatically in TBI rehabilitation. One cannot simply discard either of these two frameworks because both serve TBI rehabilitation practice in some ways. The question is, then, how we will be able to manage these frameworks while solving the conflict occurring between them. To solve this conflict, professionals may need to view these societal images through the subjective experience of people with TBI themselves. Attention to the Self of People with TBI Lately, more rehabilitation professionals are interested in the subjective experiences of their clients who sustain TBI. Besides the community-based services based on the philosophy of independent living, professionals have become interested in psychotherapeutic interventions or counseling services for this population. They want to know more about how people with TBI consider and feel themselves in the TBI experiences. Particularly, “loss of self” is an important psychological phenomenon that may need professional intervention. Some neuropsychological studies have researched the change of self, or personality, after TBI. However, their findings are
23 Introduction limited and not enough to understand the subjective experiences of TBI survivors. Counseling People with TBI People with TBI are likely to experience some psychological distress to which counseling or psychotherapeutic intervention would be necessary. They sometimes present emotional changes, including anxiety, depression, or hysterical disorders (Rosenthal & Bond, 1990). These changes can be a serious hindrance to rehabilitation, not only in hospitals or rehabilitation centers but also in work places (Haffey & Lewis, 1989). Until recently, however, most of the programs in TBI rehabilitation did not offer counseling or psychotherapeutic services to help people with TBI to deal with these emotional issues. This section will describe the recent development of counseling services for TBI population as well as the possible focus of the services. The current status of counseling services in TBI rehabilitation. There were some reasons for the lack of counseling services in TBI rehabilitation. One of them was that professionals believed that individuals with TBI would not get much benefit from such intervention. Counseling, as well as psychotherapy, is an intervention that needs self-awareness, communication skills, memory, and other thinking abilities on the part of the client. It is believed that people with TBI lack these skills and abilities (Lewington, 1993; Prigatano, 1991). Another reason was that neuropsychology prepared a guiding principle for the service delivery TBI rehabilitation. Because neuropsychology was likely to focus on the person’s “ability,” it did not develop good tools to evaluate or treat emotional changes of people with TBI (Caplan, 1982). In addition, it is chiefly concerned with symptoms caused by brain pathology although the emotional changes after TBI could be “normal” reactions to the situations (Armstrong, 1991; Prigatano, 1987). Professionals who depended on neuropsychological knowledge would not
24 Introduction know how to understand and help their clients. Since late 1980s, professionals have been more interested in providing counseling or psychotherapeutic intervention for people with TBI, especially for people with “mild” and “moderate” brain injuries. Suggested services include psychological counseling, existential psychotherapy, vocational counseling, and marital and family therapy (Cicerone, 1989; Lewington, 1993; L. Miller, 1993; Nadell, 1991; Pollack, 1994; Prigatano, 1987; 1991). It is true that functional changes of people with TBI often make these services difficult. Therefore, professionals may need to modify traditional ways of counseling and psychotherapy so that they can meet the special characteristics of this population. Nochi and Handley (1996), for instance, suggested 12 points to be considered in counseling people with TBI. The self as a focus of counseling. The focus of the intervention varies with the type of counseling or psychotherapy, but any psychological intervention necessitates understanding subjective experiences of the client. As I mentioned before, Hitchcock (1986) called the essential mode of understanding for counseling practice the “qualitative understanding.” Counselors have to complement with it the “quantitative understanding,” which is an objective understanding through the comparison with a standard or a theory. The qualitative understanding may be known as the “empathic understanding,” which is defined as an understanding of the client’s emotions and personal meanings through his or her frame of reference. According to Rogers (1975), it is a core condition of counseling and psychotherapy, but it is also crucial when the client has a disability (K. R. Thomas & Parker, 1986). Rehabilitation counselors sometimes define their clients in medical terms without understanding them empathically. However, the dependency on the medical framework is criticized these days (Rubenfeld, 1988). People with TBI should be understood as empathically as possible in TBI rehabilitation
25 Introduction as well. Some professionals like Pollack (1994) consider that empathic understanding is difficult when their clients have TBI. It is certain that the emotions that people with TBI express may come directly from brain pathology. It may be also true that some of them have difficulty in becoming aware of their functional changes. This does not mean, however, that all of their experiences cannot be understood empathically. As Armstrong (1991) suggested, their behaviors include “normal” reactions that people without TBI would make in the same situations. Giving up the empathic understanding from the beginning, then, creates a condition like a Type II error in statistics, which means accepting the null hypothesis when actually the opposite is true. In other words, the counselor may exclude many individuals from his or her empathic understanding when he or she can understand them empathically. Professionals often mention “loss of self” as a critical issue in counseling people with TBI. For example, Lewington (1993) recognized that TBI might change and impair a person’s sense of self for many reasons. Pollack (1994), although he wrote that it was difficult to understand people with TBI empathically, focused on loss of self in his psychotherapeutic intervention. He stated, “The primary goal of psychotherapy in the treatment of brain injury patients is... to enable the injured person to reestablish, or in the case or more minor brain injury, to reconfirm the sense of self” (p.674). Loss of self is an issue not only for TBI survivors in acute stages but also for those who are in their chronic stages (Willer, Allen, Liss, & Zicht, 1991). Now that community-based services are beginning to develop in TBI rehabilitation, professionals need to pay more attention to the self of TBI survivors who live in a community. The Self and Brain Injury in the Literature Several theoretical papers referred to above mentioned loss of self of people with TBI, but they did not elaborate the concept in detail. In this section, first, I would like to review the
26 Introduction medical and neuropsychological literature on the self of people with TBI. This review will show how traditional researchers have approached the concept of self and what they have revealed about the self of people with TBI. Then, I will point out some limitations of traditional research. It seems that medical and neuropsychological researchers have not produced fruitful results so far because they defined the concept of self too narrowly. The self as a static structure.
There have not been many medical /
neuropsychological studies concerning the self of people with TBI because of the difficulty in defining the self operationally. When the word “self” is used as the research topic in these studies, researchers tended to define it as a structure that can be observed from the outside. Kurt Goldstein (1939), a prominent neurologist, once referred to the self as an essential concept to understand individuals with brain damage. According to him, their behaviors did not simply reflect their brain pathology but represented their struggles for “self-actualization.” Thus, the self of people with brain damage was considered to be an active agent that interacts with itself and with the environment in order to “actualize” its potential. It does not seem, however, that this idea has been developed and widely adopted at least in the field of empirical research. The medical / neuropsychological literature has described personal characteristics of people with TBI by using the concept of “personality,” rather than “self.” According to Prigatano et al. (1986), personality is defined as “patterns of emotional and motivational responses that develop over the life of the organism” (p. 30). It is not uncommon that TBI changes the person’s pattern of responses; after TBI, the person can be more aggressive, impulsive, euphoric, depressive, and so on. Researchers revealed the relationship between these personality changes and brain pathology. Heilman, Bowers, Valenstein, and Watson (1986), for example, wrote that the person may become more euphoric when the right hemisphere is injured. In the
27 Introduction neuropsychological studies like this, personality is considered to be a group of behavioral traits that can be measured quantitatively using “objective” personality tests, such as the MMPI. The concept of personality is not exactly the same as that of self. The latter is more concerned with subjective knowledge and evaluations of such behavioral traits as well as other personal characteristics (Persinger, 1993). Some researchers employed the concept of self in their studies on brain injury, but they often conceptualized it as a the static structure inside the individual. It seems that they were interested in discovering how brain injury impaired the self, instead of in how the self tries to interpret itself in the experience of brain injury. Vanderhaeghen (1986), for example, demonstrated that people with brain injuries were unstable in choosing words that represented their personal characteristics. Also, this tendency was more conspicuous among subjects who had lesions in the right hemisphere of the brain than those who had left hemispheric lesions. Vanderhaeghen concluded that the self-concepts became vague after brain injuries and that one’s self-concept was more associated with the right hemisphere. In this research, the self is just a dependent variable, whereas the brain injury is an independent variable. The self of people with brain injuries is also addressed in the studies of “unawareness.” Researchers have shown that brain damage can cause lowered self-awareness (McGlynn & Schacter, 1989; Prigatano & Schacter, 1991). Some individuals with brain injuries are unaware of their own disabilities or impairment, such as blindness, hemiplegia, and amnesia, even if it is obvious to people around them. Neuropsychologists have tried to identify responsible areas of the brain for the lack of self-awareness and to discover the underlying mechanism. For instance, Stuss (1991) reviewed the literature and suggested that the unawareness could be found more often among people with frontal lobe lesions. He then pointed out the relationship between the
28 Introduction frontal lobe and the self while assuming that self-monitoring was an essential function of the self. Again, the self is understood as a structure affected by brain pathology in this research context. The self as an active agent. Traditional, empirical studies postulated that brain injury was always the independent variable that influenced the self, whereas the self was always the dependent variable affected by the brain injury. This seems to correspond with the common notion that people with TBI are “patients” who have some dysfunction within themselves. One could see that it is not the case, however, when one interacts with TBI survivors and examines their actions. They constantly try to understand themselves and interpret even their brain injuries. In other words, the brain injury can be a dependent variable to their selves in the real world. One will miss the essential aspect of self of people with TBI if they miss these active aspects of the self. The active selves of people with brain injuries have been illustrated in some descriptive studies and anecdotal reports (Charmaz, 1991; Luria, 1972; Sacks, 1995;1985). In my pilot study (Nochi, in press), too, individuals with TBI made sense of their brain injuries while getting information from people around them during their recovery stages. I carried out in-depth interviews with four individuals with TBI. Their narratives clearly illustrated the process in which they interpreted their brain injuries. Thus, they found themselves in an unfamiliar environment and gradually discovered that their bodily and intellectual functions had changed. They did not have good knowledge of the reasons for the changes because of a lack of memory. However, they filled that memory loss with common, scientific explanation about TBI, which made a causal connection among the accidents, brain injuries, and their present difficulties. Apparently, the common explanation of TBI is “scientific truth,” but the interpretations of and reactions to this explanation can be different among people with TBI. Some of them may
29 Introduction become severely depressed if they are seized with an image of the incurable nature of brain damage (Malec, 1992). By contrast, other people may improve their self-esteem when they believe that their amotivational states, for instance, come not from laziness but from the brain pathology (Kemp, 1992). Moreover, the common explanation of TBI is sometimes challenged by an alternative explanation. It is known that emotional changes experienced by people with TBI are often ambiguous in their causes. Depression, for instance, may not be mere manifestation of brain pathology, but it may be instead a “normal” reaction to the devastating reality (Caplan & Shechter, 1987; Prigatano, 1987). This ambiguity allows people with TBI to attach varied meanings to their TBI-related changes. Individuals with TBI also make use of the common explanation of TBI to understand and present themselves. In my pilot study, some of the informants actively used the notion of TBI to explain their behaviors, particularly when they had made failures or when they expected failures. They treated their brain injuries as another agent of their behaviors for which they were not responsible. On the other hand, other informants were uncomfortable with relying on the notion of TBI to explain their behaviors. They categorized themselves as TBI survivors to qualify for Social Security, but otherwise they did not want to use that notion. They believed themselves to be the only agents for their actions. Thus, people with TBI may actively interpret the notion of TBI to understand themselves and manage their self-images. It is necessary for professionals to consider this active nature of the self to understand people with TBI in the community as well as in counseling settings. Research Questions This study explored the experience of loss of self that people with TBI were likely to have when they lived in the community. Rehabilitation professionals, as well as society, have understood
30 Introduction people with TBI through a bio-medical framework and considered that their selves are affected by brain pathology. However, such an outsider’s viewpoint is not useful in understanding loss of self of TBI survivors since it is a subjective experience that appears in their clear consciousness. The biomedical image might be even something objectified by the self of people with TBI. Therefore, I started this study with examining the subjectivity of people with TBI in various contexts to view the experiences of loss of self from their perspectives. More specifically, I prepared the following research questions for this study. What does “loss of self” mean to people with TBI themselves? When and how do they experience it? What conditions influence the experience of loss of self? Is the bio-medical image of themselves related to that experience? What does it mean to be a person with TBI? What does the brain injury mean to people with TBI? How do they feel about themselves when they experience loss of self? How do they try to overcome the loss if it is a negative experience? When do they think they have overcome it? I looked for answers to these questions while examining the self-narratives of the informants who sustained TBI.
31 Methodology
Chapter 2
METHODOLOGY
In this chapter, I will describe not just the specific procedures of my investigation but also theoretical backgrounds of qualitative methods, which I adopted for this study. The methodology section in a traditional research paper would only present concrete procedures of that research, but this study may need additional explanations of its methodology. Few qualitative studies have been conducted on people with TBI, who have been targets of medical and psychological sciences most of the time. Readers who are interested in issues on TBI may not be familiar with qualitative methods. Therefore, this chapter will show why I used the particular procedures as well as how I conducted this research. The Approach to the Understanding of Human Beings Some modes of understanding human beings have been developed in human science, which are parallel to the types of understanding that I already mentioned above. Regarding the understanding of people with disabilities, there are the medical viewpoint and the socio-political viewpoint. Hitchcock’s (1986) concepts of quantitative and qualitative understandings, as well as Rogers’s (1975) empathic understanding, represent typical modes of understanding used in counseling settings. A similar dichotomy can be found in the history of human science. Thus, researchers have used a natural science mode in approaching human beings, whereas they are
32 Methodology beginning to pay attention to alternative modes as well. I will clarify these two modes of understanding in human science in this section. The Traditional Paradigm of Human Science Traditionally, human science research has been conducted within a positivist paradigm, which is common to natural science. This paradigm carries the presumptions that only one world exists for everyone, and that any phenomena can be explained and determined by universal, causal laws (Lincoln & Guba, 1985; Hoshmand, 1989). Many researchers have believed in these presumptions and assumed that human mind and behavior can be objectified in the form of universal laws. Currently, some theorists are questioning the traditional paradigm and trying to find an alternative paradigm that is more appropriate to the understanding of human beings. I will take psychology as a typical, traditional type of human science to illustrate characteristics and limitations of the traditional paradigm. A historical overview of the traditional frameworks. It is possible to characterize the traditional paradigm of human science as treating human events like natural events. This characteristic can be traced back to Rene Descartes’ division of the person into a body and a mind in the 17th century (Husserl, 1954/1970). Descartes postulated that the human body is an “extension” that operates in a mechanistic way, whereas the human mind, or thinking self (cogito), is an agency of objectifying the extension. This idea implied that the person’s mind could understand the bodily functions, like natural events, as a causal link of matters. As time went on, the same approach became applied to human minds as well in the modern Western world, which Husserl (1954/1970) called the “naturalization of the psychic” (p. 63). Psychology as an academic discipline, for instance, came into existence in the end of 19th century, modeled upon natural science. Under the influence of Newtonian physics, it developed quantitative
33 Methodology methods to investigate human mind or behavior from an objective viewpoint. At the same time when academic psychology was established, Sigmund Freud developed the psychoanalytic theory to describe the structure and function of human mind (e.g., Freud, 1963/1916-17). The theory explained human mind in deterministic and mechanistic terms. Thus, a human psyche is ruled by three components of personality, that is, the id, ego, and superego. The id is a source of psychic energy (libido) as well as an unconscious mind that drives the person to seek pleasure. The ego tries to mediate the id with the outside world by finding a realistic way to satisfy the id’s desire. The superego is the person’s conscience that censors the id and ego to make the person follow the moral principle in society. Problems of the person’s mind and behavior result from dysfunction of the dynamics among those three components, which often stems from his or her childhood experiences. In the early 20th century United States, psychology was more oriented toward natural science with J. B. Watson’s behaviorism (Abram, 1989). Watson excluded the concept of mind from psychology because of its subjective nature and focused only on observable behavior. One can still see the essence of behaviorism in B. F. Skinner’s theories, which remain influential in contemporary mainstream psychology. Skinner believed that human behavior could be understood to follow behavioral laws and that psychologists could formulate these laws through observation and experimentation. Until his death in 1990, he continued attempting to formulate behavioral laws by associating observable behaviors, or responses of the organism (R), with rewards, or stimulus in environment (S) (Delprato & Midgley, 1992). Behaviorists believe that behavioral laws constructed through a systematic, experimental procedure are universal, that is, are applicable to all human beings.
34 Methodology Whereas radical behaviorists, such as Skinner, are mainly concerned with S - R relationship, neo-behaviorists as well as cognitive psychologists adopt the relationship of S - O (organism) - R as their conceptual framework (Abram, 1989; Neisser, 1967). This framework connotes that one’s behavior is not directly associated with environmental conditions but mediated by the O, that is, personal factors. The O can be any internal variables including a physiological factor such as a hunger level. But many contemporary psychologists attend more to one’s cognitive structure, such as memory and thinking. They believe that the cognitive structure is a complex organization of functional components, or “modules,” among which information constantly flows. In their theories, a human mind is regarded here as an analog of a computer (F. Evans, 1993). Just as the natural sciences have benefited people by predicting and controlling natural phenomena, so these traditional frameworks of human science have also served people’s lives. These frameworks have produced lawful propositions about human behavior, which allow the control of “problematic” human behavior. Thus, one can analyze a behavior to find its determinants when it appears as a “problem.” It is, then, possible to predict and change the behavior by measuring and operating its determining variables. For instance, behavioral laws that Skinner and his followers established are useful in controlling or modifying perceived unfavorable human behaviors, such as phobias and tics (Bellack, Hersen, & Kazdin, 1982). This is why the traditional framework is often used in medical settings to remove behavioral problems. Criticisms of the traditional frameworks. In spite of those advantages, the traditional frameworks have also been criticized. I will distinguish two types of criticisms here. One type is directed toward the realist assumptions of the traditional paradigm, which is particularly
35 Methodology conspicuous in behavioral and cognitive approaches (Faulconer & Williams, 1985). The assumptions imply that human events exist independent of the observer so that one can observe the events from an objective standpoint without changing their nature. It is also assumed that systematic investigations of human events from such an objective viewpoint allow the production of universal laws of human behavior. The critics of these assumptions argue that, unlike natural science, it is hard to secure an objective viewpoint as well as to build universal laws in human science. Critics present the following grounds in developing this line of criticism of the traditional human science. First, a researcher inevitably has a theoretical standpoint that is embedded in a specific socio-cultural, historical context. He or she cannot simply get out of the standpoint to have an “objective” view of human events. As Hanson (1970) pointed out about science in general, any theoretical standpoint constantly influences the process of data collection and interpretation. Secondly, research subjects are also under the influence of a specific context in which they are located. Experimental psychologists, for example, attempt to prepare a “neutral” condition for their research, where they can observe target variables while controlling other variables. Actually, it is not neutral for the experience of research subjects but another special situation full of meanings (Giorgi, 1970). When the participants know that they are studied, they may behave so that their behaviors can meet the researcher’s expectations. This phenomenon is generally known as the experimenter expectancy effect or self-fulfilling prophecy (Flemming & Manning, 1994; R. Rosenthal & Jacobson, 1968). The other type of criticism toward the traditional paradigm points to the deterministic or mechanistic views of human beings. The traditional paradigm presumes that one’s actions are determined by external and internal factors, such as unconsciousness or childhood experiences,
36 Methodology environmental contingencies, and cognitive structures. Critics are particularly concerned about the consequences of these deterministic views. For instance, Maddi (1967) wrote that determinism in human science might produce the conditions of learned helplessness among people. He argued that people would not continue hoping to make their lives better if their actions were already determined. Also, Koch (1981) worried that, by the agency of the selffulfilling prophecy, people might change themselves so as to meet the images of human beings described in the traditional frameworks. They thus become something like a machine waiting for order from the outside. Other critics warn the public that the traditional deterministic paradigm can contribute to maintaining a status quo, rather than to improving human conditions. For instance, traditional theories are likely to make people overlook the influences of larger societal systems (Prilleltensky, 1989; 1994; Sampson, 1981). Those theories postulate the cause of human events in the individual or his or her immediate environment. As a result, they can hide the fact that the macro social environment, such as political and economic systems, affects many aspects of human events. Guba and Lincoln (1990) also pointed out that the deterministic theories could be used by the strong to dominate the weak. Thus, these theories might maintain or even create inequalities among people. The traditional paradigm might function for the current social institutions, even where problems are rampant. Seeking an Alternative Paradigm for Human Science The traditional approach was obviously inappropriate for this study because my interests were in the subjective experiences of people with TBI. Then, what approach is possible as an alternative? Theorists are now looking for an alternative paradigm to overcome the problems within the traditional paradigm of human science. They have proposed potential directions; from
37 Methodology explanation to understanding, from objectivism to subjectivism, from a focus on behaviors to a focus on narratives, and from the quantitative to the qualitative (e.g., F. Evans, 1993; Hoshmand, 1989; Lincoln & Guba, 1985). This “paradigm shift” may not be new to anthropology or sociology, but it is just occurring in psychology and its related fields. This subsection will discuss common characteristics of the alternative frameworks of human science and then introduce ideas of symbolic interactionism as the analytic scheme for this study. According to philosophers of science, there are no such things as “raw data,” but any data are created through the researcher’s theory or standpoint (e.g., Hanson, 1970; Kuhn, 1970). If this is the case, it is meaningful to present here my standpoint from which I view the research subjects and to discuss the characteristics of that standpoint. The meaning of “understanding.” One of the indices of the new paradigm is the emphasis on “understanding” in contrast to “explanation.” The meaning of explanation is relatively clear. It means putting the object to be explained in a cause-effect relation by reducing the object to smaller components (Darksen & Gartrell, 1992). This represents the traditional approach of human science. On the other hand, the meaning of understanding is often vague because each theorist or researcher has different emphasis. Some researchers state that to understand people involves taking their viewpoints, but the meaning of “taking their viewpoints” is still ambiguous. I would like to put in order the meaning of understanding while reviewing the general features of new paradigm research. It seems that there are three aspects in the meaning of understanding. Thus, to understand a certain action of the person, the researcher should pay attention to: (a) the person’s intention or will; (b) the socio-cultural and historical context in which the person lives; and (c) the interaction between (a) and (b) in one’s subjectivity. These
38 Methodology features serve to overcome the realist and deterministic nature of the traditional paradigm. When we take the other person’s point of view to understand his or her action, the intention or will is more relevant than “objective” causes. Vendler (1984) defined the “understanding” as imagining being in the other person’s situations. We “understand” the other person when we accept his or her actions and feelings as those which we would have in the same situations. It is not helpful in this understanding to analyze the other person’s behavior in terms of objective factors. When the person raised his or her hand, for example, it is possible to say that the person did that because the brain sent a signal to the muscle of the hand. This analysis does not contribute to our understanding of the person, however. Such an “objective” mechanism is outside the person’s consciousness or intention, and we could not experience this mechanism even if we put ourselves in the person’s shoes. Rather, understanding others involves reconstructing a story that the person holds to link his or her will or intention to the action. Among several alternative frameworks so far proposed in human science, the phenomenological approach stresses this type of understanding of human experience (Kruger, 1981; Giorgi, 1970). Any experience appears to the person as a chain of meanings according to his or her intentionality. For instance, simple perception of a pen in front of me contains a sequence of meanings. This pen comes into my consciousness because I intend to make a note of some items to buy at a grocery, I know I have nothing to eat in the refrigerator, and so on. In a phenomenological study, researchers put their “reality” in a parenthesis to return to the subjectivity of the research participant. They describe his or her conscious experience that is represented in self-reports. The aim of the phenomenological approach is to find the “essence,” or a structure of meanings, of an experience. As Vendler (1984) also pointed out, it is necessary to know the situations that the other
39 Methodology person faces, if we want to understand the person’s intention. Although intention is not determined by situations, the person comes to have it in relation to situations. Each situation is a figure that appears against the ground of socio-cultural context where the person lives. This context is like a language system that one uses. F. de Saussure (1959/1931) clearly stated that the established rules of language like semantics and syntax, which he called the “langue,” divided the world in an arbitrary manner. These rules enable one’s everyday use of language, which Saussure called “parole.” Likewise, the socio-cultural context provides the background for the person’s definition of each situation, under which he or she has an intention to conduct a certain action. Ethnographic-naturalistic inquiry is sensitive to this socio-cultural context in understanding people. One of the goals of ethnographic - naturalistic inquiry is to reveal the characteristics of socio-cultural context that the person experiences (Lincoln & Guba, 1985; Morse, 1989). Just as languages differ with the culture, so each cultural or sub-cultural group has their ways to categorize the world. Ethnographic researchers, therefore, seek “natural” or sensitized categories that organize the person’s experiences. Understanding should not involve applying the researchers’ pre-existing categories to the research subject. Like anthropologists who study another culture, the researchers of human science try to see the world through the research subject’s eyes. They use interviewing and participant observations for the major research techniques. Each person’s experience is neither entirely consistent with the cultural context nor completely regulated by it, however. When one uses language, for example, one should follow the rules of language but can go beyond the rules by using metaphor or by coining new words to communicate what one wants to say. Likewise, each person’s experiences take place against the
40 Methodology backdrop of the socio-cultural context, but the whole experience cannot be reduced to the context. The person finds the unique way to satisfy one’s will in a given socio-cultural context, and the person can even protest the society and culture that are against one’s will. Thus, understanding people involves understanding the interactive process represented in their subjectivity between their will or intentions and the socio-cultural context. Ideas of symbolic interactionism. The concept of understanding that I described above is already incorporated into a sociological theory. The theory is called symbolic interactionism, which was developed upon G. H. Mead’s idea of human beings as symbol making/using creatures (Mead, 1934). According to Blumer (1969), who coined the term “symbolic interactionism,” its three premises are: (a) people act on the basis of a perceived meaning; (b) a meaning arises out of social interaction, and; (c) meanings are mediated/modified by a process of interpretation by individuals. These premises overlap the three aspects of the concept of understanding even though it is difficult to make an exact one-to-one correspondence. These premises are currently recognized as basics in sociology as well as social psychology (Fine, 1993). They served for an analytic scheme for this study as well. One of the most important concepts in symbolic interactionism is that of self. It is considered as a meaning that appears in interaction, not as an entity that exists inside the individual (Blumer, 1969; Hewitt, 1997). According to Mead (1934), a meaning of an object or an event manifests itself among people who interact with each other. A clenched hand that a person raises, for instance, will have a meaning when another person runs away from it. In other words, another person’s response to the gesture settles its meaning. Also, one can confirm the meaning when he or she takes the standpoint of the other person who responds to the gesture. The self is developed in the same manner. Thus, the person initially reacts to external stimuli
41 Methodology spontaneously or impulsively. This aspect of self is called the “I.” When taking the standpoints of other people to view one’s reaction, one can learn other people’s organized sets of responses toward oneself, which Mead called the “Me.” Then, the person, as the “I” again, spontaneously reacts to the “Me.” This interaction process between the “I” and “Me” creates the concept of self, which the person incorporates into the next presentation of him or herself to other people. The person develops his or her self not only by taking the standpoint of concrete others but also by taking the role of “generalized other,” namely, “the generalized perspective of the group, community, or society as a whole” (Hewitt, 1997, p.65). The generalized other represents social norms and expectations that are shared by the members of the group. To take an example used by Mead (1934), people who play baseball can understand how to behave when they view themselves through the rules of baseball, which is one type of generalized other. Until then, they cannot know who they are and what to do in the game. Similarly, the person develops his or her self when being aware of a set of expectations provided for the person by the generalized other. This set is usually called a “role,” whereas it may be called a “label” when it oppresses the person (Perinbanayagam, 1975; Rubington & Weinberg, 1987). Society provides many roles for the individual, but they are not treated equally. The person’s self-concept or identity allows such differential treatment of roles. As Hewitt (1997) pointed out, the person’s biographical knowledge as well as his or her interpretation of the situation makes him or her attach more value to a certain role than others. That role really functions as an organizer or an energizer of the person’s conduct as one identifies oneself with it. Of course, the person can have more than one identity. Stryker (1980) postulated that the person’s self has many facets, and so he or she has multiple identities each of which has a different degree of importance, or “salience.” The person tends to look for opportunities that
42 Methodology enable him or her to play roles that correspond to more salient identities. Moreover, people do not only choose a role or roles prescribed by society. They can make roles for themselves based upon given expectations even though they cannot be completely free from them (Brissett & Edgley, 1990; Hewitt, 1997). Expectations about the behavior from society are not always consistent and sometimes even contradictory to each other. Also, the individual may receive different sets of expectations in different situations. He or she has to choose the most appropriate set of expectations and/or modify them so that they can fit his or her definition of the situation. R. H. Turner (1962) called this process “role-making,” in which one constructs a role for oneself composed of a consistent set of behaviors. Thus, when people play roles in everyday life, they are presenting themselves as unique beings while, at the same time, representing a society where they live. The role that one makes for oneself is not meaningful, however, until other people acknowledge and accept it. When they define the person or the situations around him or her differently, he or she receives from them the “Me” that contradicts the presented self. In order to make other people accept the self that one presents, one is always concerned about one’s appearance, expressions, and overt actions. This is especially the case in Western society (Brissett & Edgley, 1990). People may actively try to manage their impressions about themselves by controlling the personal information even though they cannot control all the information (Goffman, 1959). Some may want to impress on others what they believe the “real” self to be, whereas some may want to cheat others with different self-images. When the person succeeds in letting other people accept the self that one presented, he or she will consider the performance “good.” Everyone looks for such a good performance in daily social interaction (Babcock, 1989;
43 Methodology Goffman, 1959). Qualitative Research Methods I used qualitative research methods to “understand” people with TBI while making the most of the analytic scheme of symbolic interactionism. Qualitative research, in contrast to quantitative research, was originally developed in anthropology and sociology. However, contemporary researchers who are interested in human services are also beginning to use qualitative research methods. One can find an increased number of qualitative studies in the literature on counseling, rehabilitation, social work, nursing, and medicine (e.g., Gama, 1992; Gerhardt, 1990; Hagner & Helm, 1994; Sherman & Reid, 1994; Streubert, 1995). This section will sketch the general characteristics of qualitative research methods as well as the criteria of research quality. Also, I will briefly review recent qualitative studies in the related fields to show advantages of applying the qualitative approach to the TBI population. General Characteristics of Qualitative Methods To understand people who are studied, several research methods have been proposed under the name of qualitative research, such as ethnography, ethnomethodology, and hermeneutics (Bogdan & Biklen, 1992; Lancy, 1993). Not all of these methods are based on symbolic interactionism, but they share some characteristics that are consistent with the analytic scheme of symbolic interactionism. One of the shared characteristics is the focus on specific perspectives of research subjects. Another one is the inductive analysis of the descriptive data. The key concepts in symbolic interactionism, such as “self” or “meanings,” also play crucial roles in describing the narratives of people who are studied and in elucidating their subjective experiences. Qualitative researchers focus on specific perspectives of people who are studied. Different people may experience the apparent same event in different ways (Berger & Luckmann, 1967).
44 Methodology Researchers view the world or reality through the eyes of the research subjects while considering the contexts in which they live. Participant observation is often an important technique for qualitative research to seize people’s individual viewpoints. It allows the researcher to reveal the subjects’ perspectives represented in their actions that occur in the natural contexts. The researcher should not be just an objective observer because the research subjects may change their actions when a stranger observes them. Instead, the researcher should be a participant observer to be a part of the natural contexts. To grasp the subject’s uniqueness in the form of language, qualitative research uses loosely structured or in-depth interviews as well. Current researchers especially attend to the narratives that the interviewee has about his or her self and the world (Polkinghorne, 1988; Sarbin, 1986). “Narrative” means a story or stories represented with language and other symbols, which meaningfully connects concrete events. Bruner (1986) postulated that the narrative is one of the two major modes of human thought. One is the logico-scientific mode, through which the person “explains” general relationship among things or events. It uses a logical or rational approach to the phenomenon to establish universal truth. The other form is called the narrative mode, which people use in shaping their intentions and actions through their own words, or narratives. In this mode of thought, people try to produce verisimilitude or appearance of truth rather than universal truth. The person’s narrative organizes the self and the world with culturally shaped notions, while transmitting these notions into the stories about oneself (Bruner, 1986; Mishler, 1986). Another general characteristic of qualitative research methods is inductive analysis (Bogdan & Biklen, 1992). Quantitative research would adopt the hypothetico-deductive approach to conduct an empirical study. It has pre-determined hypotheses, which restrict the attention of the researcher to a certain part of phenomena. In contrast, qualitative researchers
45 Methodology approach their research topic inductively to discover something meaningful to people who are studied. They do not postulate a specific hypothesis before starting the research because it may frame the phenomenon from the outside. The grounded theory method is often used in this inductive process (Glaser & Strauss, 1967). Researchers construct hypotheses while collecting and analyzing data to build a theory tightly grounded in the empirical data. Thus, they seek in data “natural” categories that research subjects use to organize their reality, and they hypothesize the relationships among the categories. Researchers are also open to new data; they compare their developing hypotheses with new data to revise the hypotheses and to produce a theory. Criteria of Research Quality As a scientific enterprise, qualitative research needs criteria to determine the research quality with which to distinguish between meaningful knowledge and mere personal opinions of the researcher (Kvale, 1995; Lancy, 1993). Traditional, quantitative methods have criteria like reliability and validity to judge the quality of research. However, these criteria reflect the goal and procedure specific to quantitative research, which chiefly aims to formulate relationships among a certain number of target variables while controlling extraneous variables. Reliability and validity are, then, indices of the extent to which research results accurately represent certain aspects of “objective reality.” Because qualitative research has different goals and procedures, it needs other criteria. I will discuss below some criteria of the research quality as well as techniques that the researcher can use to obtain credible data and to secure the falisifiability of the findings. “Reliability.” In quantitative research, reliability means consistency of the observations, but qualitative research does not always seek consistent, repetitive observations. Because qualitative researchers usually conduct interviews or participant observations in natural contexts without controlling variables, it is difficult to obtain the same observations again and again. If a subject
46 Methodology makes the same response repeatedly during the interview, he or she may not understand the questions or may have some reasons for persisting to that response (S. K. Biklen & Moseley, 1988; Kirk & Miller, 1986). A repetitive observation is, thus, not the goal for qualitative research but suggests a meaning that the researcher should explore further. Moreover, inconsistent behaviors or responses that the research subject shows do not mean those observations are unreliable. By considering the contexts of the observations, researchers may find his or her typical actions behind the apparent inconsistency. However, the qualitative researcher needs to be careful about providing conditions in which the research subjects can present their typical actions or responses without being excessively influenced by the presence of the researcher. Even though it is impossible to get rid of all the influences, researchers should be aware of potential influences and consider strategies to minimize them (Bogdan & Biklen, 1992; Hagner & Helm, 1994). For instance, the researcher should engage in the subjects’ activities for a long time so that his or her presence cannot disturb them. The researcher should also have a good rapport with the subjects before starting the interviews so that they can be comfortable in talking about their personal experiences and feelings. When the subjects have disabilities, it may take longer for the researcher to obtain a good rapport and to learn their behavioral characteristics and special needs. “Internal validity.” In quantitative research, the researcher can prove its internal validity when the results certainly reflect the factors on which one focuses, not “extraneous” factors or artifacts. Qualitative research neither chooses the target variables at the beginning nor tries to control the influence of extraneous factors during the data collection. In this sense, the concept of internal validity used in quantitative research is not meaningful in qualitative research. Both qualitative and quantitative studies are similar, however, in that researchers find more abstract
47 Methodology representations of the phenomenon from the data. For instance, a qualitative researcher may inductively extract sensitized concepts from the data and reconstruct these concepts into categories or themes. The researcher, then, should have a method to determine whether the findings really reflect the data, and whether his or her reasoning is credible. There are some strategies to increase the credibility of the researcher’s analysis or interpretation of the data (Hagner & Helm, 1994; Sandelowski, 1986). In writing field notes, the researcher should make a “thick description” (Geertz, 1973). Thus, concerning a research subject’s conduct, the field notes should include its preceding contexts and following consequences, as well as behaviors and feelings of the researcher him or herself. Such a thick description enables the researcher to see many possible relations among various events from which he or she can construct a more plausible hypothesis. Also, the researcher should actively look for data that are incompatible with his or her provisional hypothesis. Incompatible data may help the researcher revise it to make more persuasive conclusions. Another strategy is called “triangulation” in which the researcher compares two or more sets of data from different sources. These strategies were embedded in the procedure of this study as well. In addition, the researcher can invite research participants as readers to validate his or her findings (Kvale, 1995; Sandelowski, 1986). When they easily recognize their experiences in the writing, the researcher can believe in some sort of validity of the findings. Their comments may confirm the researcher’s conclusions or, at least, help the researcher to revise them further. The researcher can also ask research participants how the findings are useful for them. If the findings help them to understand themselves more deeply by revealing what they really want or need, for instance, it is possible to say that the findings have “internal validity.” “External validity.” In quantitative research, external validity means generalizability of the
48 Methodology findings beyond the specific situations and subjects that the researcher studied. It may be the most important value of quantitative research, given the aim of predicting and controlling the events in different occasions. On the other hand, many qualitative researchers do not make much of such generalization that quantitative researchers would seek. Because a qualitative study usually uses a small number of research participants who are not randomly selected, it is difficult to achieve generalization in a quantitative sense (Bogdan & Biklen, 1992; Conrad, 1990). Also, generalization may not be in harmony with the main goal of qualitative research, which is to “understand” people or events more deeply as being unique and diverse. Thus, qualitative researchers primarily seek the depth of understanding rather than the width of generalizability, just as counselors or psychotherapists pursue the former goal regarding their clients. Some qualitative researchers are interested in the impact of their findings on the readers as an equivalent of external validity. When discussing validity of her own work, for example, Richardson (1990) attached importance to the reactions of people who came under the same category that she studied. Thus, if they easily recognize their experiences in her writing, the findings will be valid beyond the group of people that she studied. Also, Denzin (1989) considered a still broader range of readers as potential judges of external validity. He stated that a purpose of qualitative research is to reconstruct the “essence” of human experiences so that it can create “naturalistic generalization” in any reader. To put in another way, if a product of research inspires the reader with an empathic or qualitative understanding of the people described, one can consider the product to have a certain kind of external validity. To Study People with TBI Using Qualitative Methods The self of people with TBI has not been much investigated using qualitative methods. This is partly because, as I discussed above, the medical framework has dominated TBI rehabilitation.
49 Methodology However, a more critical reason may be that researchers have believed that they could not obtain credible data from people with TBI (Crisp, 1994). It is true that their cognitive and intellectual challenges after brain injuries make it difficult for people with TBI to reflect on themselves and to provide consistent remarks. However, current researchers of disability studies have developed some techniques to get credible data from people with various disabilities. Recent disability studies that used qualitative research methods, in fact, produced insightful findings about subjective experiences of people with disabilities (e.g., Ferguson, Ferguson, & Taylor, 1992; Langness & Levine, 1986). Techniques to get credible data. Careful data collection and analysis allow researchers to get credible information from personal accounts of people with severe disabilities. Researchers used to believe that people with disabilities, particularly people with intellectual challenges, could not reflect on themselves to produce consistent information. However, recent studies clearly show that this is not the case. Researchers have accumulated knowledge on the techniques of collecting and analyzing personal accounts of people with disabilities in a more reliable way. S. K. Biklen and Moseley (1988), for instance, proposed some approaches to obtain reliable data from the narratives of people with severe disabilities. The authors recommended that researchers observe a research subjects in a natural context to prepare meaningful questions for him or her. Researchers should also interview the subject in an environment familiar to him or her while emphasizing that they are researchers, not supervisors. Sometimes questions should not be open-ended but divide into smaller parts so that the subject can understand and answer them. When the researcher study people with TBI, he or she needs to take special care of their unique characteristics. Practitioners made several suggestions for the counseling services for people with TBI (Lewington, 1993; Nochi & Handley, 1996). Some of their suggestions can be applied to a
50 Methodology qualitative study, especially to interviewing. First, the researcher should carefully prepare an interviewing environment. It should be free from noise and have adequate lighting, seating, and ventilation, because the interviewee may be easily irritated or distracted by such environmental conditions. Second, the researcher should find appropriate communication channels through which the interviewee can express his or her thoughts and emotions. Besides verbal or written communication, the researcher should attend to the interviewee’s body language as well. Third, the researcher should use more frequent feedback to secure the communication and to facilitate the interviewee’s self-exploration. The researcher’s frequent repetition and summarizing can help the interviewee to concentrate on one topic. Qualitative research on disability. Qualitative studies on people with disabilities, especially studies on people with mental retardation, have produced fruitful results by using the techniques that I mentioned above. For example, Bogdan & Taylor (1994) adopted the life story method to describe in detail the perspectives of individuals with mental retardation. Also, Lutfiyya (1991) conducted in-depth interviews with people with mental retardation and their friends to clarify the meaning of friendship for them. These works, among others, illustrated that people with disabilities could have much different views of their lives from outsiders’ descriptions about them. Their voices that express their wants and needs can provide crucial information to improve social policies as well as service programs for this population (Charmaz, 1990; Denzin, 1989). In addition, these studies showed that the perspective of these individuals with disabilities had many things in common with that of people who had no disabilities (Bogdan & Taylor, 1994). This finding will help society to remove negative stereotypes about people with disabilities and facilitate the understanding of them. Since the late 1980s, a few empirical studies have examined the subjective experiences of
51 Methodology people with TBI, based on interviews with them (Bergland & Thomas, 1991; Crisp, 1994; Karpman, Wolfe, & Vargo, 1986; Krefting, 1990). These studies clearly showed that personal accounts of people with TBI could be credible data. If the researcher carefully selects the research subjects, listens to their narratives, and analyzes the data, he or she attains a deeper understanding of people with TBI. The results of these studies also suggested that people with TBI, too, made sense of their worlds through their unique perspectives. For example, Karpman et al. and Bergland and Thomas carried out semi-structured interviews with people with TBI and their families to find common concerns. The other two studies were concerned with more specific areas of the experiences that people with TBI have. They explored communication between individuals with TBI and care-givers, and the images that individuals with TBI have about their community lives. I will examine the contents of these studies in Chapter 8. Procedures of Study I employed qualitative research methods for this study. For the data collection and analysis, I conducted in-depth interviewing, participant observation, and text analysis, while using the grounded theory method (Glaser & Strauss, 1967). These methods were chosen for several reasons. Because perspectives of people with TBI were not fully explored thus far, it was difficult to postulate specific hypotheses in advance. This study was to be more oriented to exploratory or heuristic investigation, rather than to aim at formulating a relationship between pre-determined, dependent and independent variables. To an exploratory study that deals with people’s narratives, qualitative research methods were more appropriate than traditional, quantitative methods (Krathwohl, 1993). I also used ideas of symbolic interactionism as the analytic scheme of this research and carefully focused on the research subjects’ interaction with their physical and social
52 Methodology environments. The following is a description of the concrete procedure used in this study. Data Sources I had three sources of data for this inquiry. The main set of data was from ten individuals with TBI whom I interviewed face to face. I also used as supplementary data electronic mail (email) written to the TBI Support List on the Internet as well as articles and papers written by individuals with TBI about their experiences. It was considered that all of these informants were aware of their brain injuries. I examined the self-narratives constructed by the informants from those three sources to reveal characteristic ways of their self-understanding accompanied by the awareness of brain injuries. Their experiences and narratives might not the same as other survivors who were unaware of their brain injuries. The primary informants. I recruited ten adults with TBI through the local TBI support group, with which I had been involved for more than two years. In selecting the informants who would be able to talk about their daily experiences, I used the following criteria: (a) understanding that they had TBI; (b) living in a community after discharge from a hospital; (c) not sustaining observable language and intellectual disabilities for in-depth interviews; (d) being interested in talking about and reflecting on their experiences. Judgment of their abilities rested on observations by myself, who had several years of experience of speech/cognitive therapy, as well as on reflections of their friends and families. The ten informants consisted of two women and eight men, to whom I refer by first names. Their basic, demographic information is shown in Table 1. Their names are changed to protect their privacy. Their ages ranged from 24 to 54 years. Eight of these informants sustained TBI from motor vehicle accidents, and the other two informants sustained TBI from a fall and a sports accident respectively. The time since injury ranged from 3 to 28 years. All informants were residents of a
53 Methodology Table 1 Background of the Primary Informants
Name
Age
Sex
The Cause
Post-
of
Injury
Injury
Marital
Employment
Status
Status
(years)
Ben
32
M
Fall
12
Single
Unemployed
Don
50
M
Car accident
10
Single
Unemployed
Ed
49
M
Car accident
3
Married
Full-time
Fred
30
M
Car accident
11
Divorced
Unemployed
Jack
27
M
Car accident
7a
Single
Part-timea
Karen
24
F
Car accident
4
Single
Part-time
Lisa
54
F
Car accident
28
Separated
Student
Norm
28
M
Car accident
6
Single
Unemployed
Richard
45
M
Sports injuryb
9b
Divorced
Self-employed
Sam
40
M
Car accident
5
Single
Student
Note. All information was current for the time of the interview. a
When I conducted another interview with Jack three years later (10 years post-injury), he was
unemployed. b
Richard had two accidents; one was an accident during training 9 years ago, and the other was a
car accident 7 years ago.
54 Methodology middle-sized city in the north-eastern region of the United States. They lived in a community, not in an institution, by themselves or with their families. Also, they attended a TBI support group and/or participated in a program designed for TBI survivors by the independent living center. Some of them regularly visited the Learning Center that was established recently for TBI survivors. These facts suggested that they all had awareness and willingness to be identified as those who had TBI. It should be also noted that the memory change of the participants would not threaten the validity of this study too much. If the focus of this study were to reproduce their experiences in the same form that they were actually encountered, their memory problem would have been a serious threat to the credibility of the findings. However, the focus was on exploring how they made sense of their past experiences as well as their present situations at present. In fact, one cannot learn what happened exactly from other people’s narratives, whether or not they have a memory problem. What one can derive is his or her interpretation of their interpretations of their experiences (Gerhardt, 1990). Therefore, I could not simply discard the data because they contradict with information from other sources, such as family members. I was more concerned with the internal structure and consistency in the informants’ narratives rather than the data’s “objectivity.” The informants from the electronic discussion group. I also reviewed email that people with TBI posted to the discussion group on the Internet from September 1994 to August 1995. This group, the St. John’s University Traumatic Brain Injury Support List, was established by a TBI survivor’s parent in 1993 and had about 270 members as of August 1995. The members included people with TBI or other neurological disorders, as well as families and professionals throughout the United States. They could write to the group anytime to ask for information or advice, share experiences, or respond to other postings. I had sometimes posted a note to provide information or to answer questions. This type of discussion group in computer-mediated communication opens for
55 Methodology people in the present society a new opportunity of expressing themselves (Bym, 1995). Research showed that people are less hesitant to disclose themselves when they use email because they did not face others who received the message (Gergen & Gergen, 1986). I expected that this data source would provide me with perspectives different from those of the research participants available for the interview and observation parts of this study. For this study, I selected email written by individuals with TBI, which referred to their thoughts, feelings, and experiences regarding themselves and their brain injuries. Their remarks were dealt with as raw data for this study, just like other interview or observation data. When I quoted their accounts in my writings, I contacted each of them through private email to get permission from him or her. I obtained permission from nineteen people, ten females and nine males. Table 2 showed the brief summaries of these additional informants’ backgrounds. Some parts of the table remain blank because I could neither find the information on the Internet forum nor obtain it through private email. The informants’ names were changed to protect their privacy. I employed family names for them, like Ms. Anderson or Mr. Carr, whereas I used first names for the primary informants. Some characteristics of these informants from the TBI List were different from those of the primary informants. The ages of these additional informants, excluding two of them from whom I could not obtain the age information, ranged from 26 to 61 years. This is quite similar to the primary informants. Some of the informants from the TBI List had the causes of injury that would not be classified as “traumatic” by medical professionals, such as “aneurysm” and “brain tumor.” I still included them in this study because they joined the TBI Support List, identifying themselves as equivalent to those with TBI. When I quoted these “atypical” informants in the finding chapters, I specified the causes of their injuries. The time since injury of the informants from the TBI List
56 Methodology Table 2 Backgrounds of the Informants from the Discussion Group
PostName
Age
The Cause of Injury
Marital
Employment
(years)
Status
Status
Injury
Ms. Anderson
45
Car accident
1
Divorced
Full-time
Ms. Burns
42
Brain tumor
5
Married
Student
Mr. Bennett
32
Car accident
3
Single
Unemployed
Mr. Carr
51
Chemical intoxication
10+a
Married
Unemployed
Mr. Chase
46
Encephalitis
37
Single
Self-employed
Ms. Clark
41
Sports injury
4
Separated
Full-time
Mr. Crawford
26
Car accident
11
Single
Unemployed
Ms. Fisher
-
Car accident
3
Married
-
Ms. Ford
45
Sports injury
11/3b
Married
Full-time
Mr. King
47
Assault
3
Single
Unemployed
Ms. Kline
-
Stroke
5
-
Unemployed
Mr. Lewis
50
Oil line explosion
5
Married
Unemployed
Ms. Morgan
43
Fall
34
Married
Full-time
Ms. Murray
45
Car accident
11
Married
Part-time
Mr. Myers
45
Stroke
1
Married
Full-time
Mr. Peck
61
Fall
1
Married
Unemployed
Mr. Randall
34
Stroke
2
Married
Unemployed
Ms. Thomas
45
Car accident
7
Married
Unemployed
Ms. Turner
47
Car accident
4
Divorced
Full-time
Note. All information was current for the time of the study. a
Mr. Carr continued to be exposed to a toxic environment from 1983 to 1985.
b
Ms. Ford had two ski accidents three years ago and eleven years ago.
57 Methodology ranged from 1 to 34 years. Some informants were only one year from their injuries, but they had already returned to their homes and resumed their community lives. Furthermore, the informants from the Internet forum were different in terms of their strengths and weaknesses. The majority of them were, unlike the primary informants, computer-literate. They also included individuals with speech problems, whereas the primary informants did not have severe speech problems. These additional data from the Internet forum were expected to provide a wider variety of perspectives on loss of self. The articles on journals or magazines. Additionally, I analyzed journal or magazine articles written by individuals with TBI. They included Dann (1984), LaBaw (1969), Linge (1990), Meltzer (1983), and Rosen (1994). Linge and Meltzer were clinical psychologists, and LaBow was a child psychiatrist. They were trying to connect their professional knowledge to their own experiences of TBI. I expected that these articles would supplement the data from above two sources by providing different kinds of insight into TBI experiences. I will provide information about the authors in the finding chapters when necessary. Data Collection To collect “reliable” data from the primary informants, I spent some time building rapport with them before the interview sessions. That was also a period during which I started participant observations of them. I joined activities in which they frequently participated, observed them in natural setting, and/or made informal conversation with them during this period. Its length varied with the informant, ranging from several hours to several months. After I established rapport with each informant, I conducted a semi-structured interview at least twice in places familiar to him or her. In the first session, the interviewees and I talked about rehabilitation activities they had gone through, difficulties they met at present, and their plans or concerns for the future. I focused on their
58 Methodology thoughts and feelings about self in particular and asked them to recall specific episodes, situations, or events that seemed to be related to these thoughts and feelings. In the following sessions, I made more specific questions to have the interviewees clarify or elaborate their points. The following are brief descriptions of my rapport with each informant and ways that I conducted the interviews and observation. The total time of the participant observation amounted to more than 100 hours. Ben. I became acquainted with Ben while working as an intern at an independent living center during the summer of 1993. Ben visited the center a few times a week to interact with the staff and consumers. I sometimes chatted with him, mostly at the center. For this research, I observed him at the independent living center as well as at a coffee shop and a restaurant that he frequented. Two 45-minute interviews were also carried out at his apartment in fall, 1993. Don. I had known Don for about four years since I saw him at a meeting of TBI support group. I chatted with him once in a while when we met each other at the meetings or some other events. More recently, he came to visit the Learning Center with Alice, his girl friend who had also a brain injury, to give her an opportunity to learn computer skills. I worked with her once a week, so I regularly met Don as well. For this study, I observed him at the center and at the support group meetings, and I conducted two 45-minute interviews at his apartment in 1996. Ed. I first met Ed at a meeting of the TBI support group in 1994. Both he and I attended the meeting regularly, so we frequently had opportunities to talk with each other. For this research, I carried out participant observations at group meetings and a coffee shop in 1995. I also made two 45-minute interviews in my office on campus because he did not mind talking there.
59 Methodology Fred. I met Fred at the TBI support group in 1993 for the first time. Although he did not come to the meeting regularly, I chatted with him every time he came. I interviewed with him twice at his apartment in 1995, and it amounted to almost two hours. The participant observation was conducted before and after the interview sessions as well as at TBI support group meetings. Jack. I saw Jack at a TBI support group meeting in January 1993. Because he was a consumer at the independent living center, I often saw him there, too. During the summer of 1993, two 30-minute interview sessions were held with Jack in a room of the independent living center. I also observed him at TBI support group meetings. Three years later, I conducted a supplementary interview at the Learning Center, which lasted about 40 minutes. Karen.
I met Karen at a monthly meeting of the TBI support group in 1992. I often
talked with her at the meetings as she regularly attended them with her mother. For this study, I observed her mostly at the meetings. In addition, two 45-minute interviews were conducted with her at her home in 1993. Lisa. Since Lisa was a master-course student in the same department to which I belonged at the university, I had known her for a few months before the interviews in 1996. She was willing to help me and talk about her experiences. I made two 60-minute interviews at the Learning Center in which she worked as an intern. Participant observation was also conducted there. Norm. I met with Norm for the first time several months before the interviews when he and his mother visited the Learning Center. After he came to visit the center regularly, I saw him every time when I worked at the Center as a volunteer computer instructor. He sometimes played computer games with me. I observed him mostly at the Center and conducted two 45-minutes interviews there in 1996.
60 Methodology Richard. I met Richard when he came to a monthly meeting of TBI support group in 1994. I often talked with him at the meetings and gave him information about “mild TBI” when he asked me. For this study, I observed him at the Learning Center and in his work place. Two 45-minutes interviews were also carried out at the Center and at his home in 1995. Sam. I had known Sam for almost two years since a mutual friend introduced him to me as a possible subject for a case study. I sometimes met him on the university campus and in meetings of the TBI support group. I observed him in a photography laboratory and at meetings of the TBI support group. Also, two 45-minute interviews were conducted with him in 1993. We held one of the interviews in my office on campus and the other one at his house. After each interview or observation session, I wrote comprehensive field notes. The field notes included word-for-word transcriptions of the tape-recorded interview and/or detailed descriptions of the informant’s remarks and actions in natural environments (Bogdan & Biklen, 1992). Interview data are a product that an interviewer and an interviewee jointly construct in a specific context (Mishler, 1986). Considering this, I carefully recorded contextual information, too, such as weather of the day, physical conditions of the environment, and the clothes that the informant and the researcher wore. I also attended to the informant’s non-verbal behavior during the sessions to understand his or her feeling and to check the validity of his or her remarks. Furthermore, my feelings and reflections were included in the field notes as observer’s comments. The resulting fieldnotes, which included data from the two additional data sources, filled almost 1000 single-spaced pages. Data Analysis Following the basic procedures of the grounded theory method, I conducted data analysis inductively both during and after the data collection (Corbin & Strauss, 1990; Glaser & Strauss,
61 Methodology 1967; Strauss, 1987). I did not postulate specific hypotheses at the beginning but had some preliminary foci for the analysis. For one thing, I focused on the informant’s thoughts and feelings about themselves directly expressed in their narratives. These thoughts and feelings might represent their understandings of themselves as well as their ways of presenting themselves to the researcher. I also paid attention to their descriptions about their experiences that did not directly refer to themselves. These descriptions might represent their specific viewpoints implicitly, which I had to describe explicitly. Furthermore, I analyzed their actions and remarks that they made toward other people in natural settings. These actions and remarks might reveal their patterns of presenting themselves in society as well as their understandings of themselves. The analysis was started with a data set from a particular informant during the data collection. When I examined the fieldnotes, I identified that informant’s remarks or actions that seemed to suggest his or her self-image, or sense of its loss. These remarks or actions represented concepts, namely, basic units of analysis (Glaser & Strauss, 1967; Strauss, 1987). They included “Comparison with the past abilities” and “‘Stupid’ as an imposed label,” for instance. While writing memos frequently, I provisionally grouped and organized these concepts and then checked whether the concepts and their organization were consistent with the whole picture of that particular informant. If a remark or an action was inconsistent with other data, I marked it for verification or careful interpretation. This preliminary coding was also useful in directing the subsequent fieldwork. Thus, I asked questions to elaborate and clarify the informant’s narratives that seemed to be important in developing categories or themes. The next step was to try the group of concepts with the data set from another informant. I changed some of the concepts and added other concepts so that they could cover both of the data sets. Categories or themes were also developed while reconsidering the organization or relationship
62 Methodology among these concepts. This refinement of concepts and their organization was continued until I finished collecting all the data sets from the ten primary informants. I also compared the organization of concepts with the additional data sets from articles and the electronic discussion group to make sure its applicability. This comparison of data from the different sources served to increase credibility of the findings, providing an opportunity of triangulation for this inquiry (Hagner & Helm, 1994). Finally, I developed four categories of loss of self with several subcategories, which I will discuss below. It is still true that one cannot simply generalize the results of this analysis to every person with TBI. I selected the informants from individuals who had an understanding of their TBI, not from severe cases whose levels of awareness of their functional changes were rather low. Individuals with serious language problems, who can express themselves neither through speech nor writings, were not included in this study, either. In addition, readers may be concerned that the findings cannot be generalized because the informants were not randomly selected. As I mentioned earlier, however, this research did not aim toward simple generalization. It is possible to compare this study with a clinical case study. A physician would not expect to find in every patient all the symptoms described in that case study, but it could be useful as a guide to examine other cases. This study has revealed categories to understand the experiences of people with TBI through their perspectives. I believe that this finding, as well, serves as a theory to develop a deeper understanding of people with TBI and a guide for rehabilitation practice.
63 Informants
Chapter 3
SUMMARIES OF THE INFORMANTS’ NARRATIVES
The following five chapters will present the findings of this study, which detail the experiences of loss of self that people with TBI are likely to have. The literature has shown that onset of a chronic illness or disability seriously affects the person’s sense of self (e.g., Bury, 1982; Kleinman, 1988). TBI seems to have a similar, but more complex effect. One can often find the question “Who am I?” in the narratives of people with TBI. For instance, a male informant who had sustained TBI eleven years ago, sometimes mentioned that question in his narrative. He stated, “I feel... I can’t tell who I am right now. I know I could be more...,” and “I am going through the hardest part because I have to figure out who I am.” He did not mean that he needed to remember his name or background though he had an extensive memory loss of events before the accident. Instead, he wanted to recover the sense of self in his present interaction with society. A female email sender, who did not have any memory loss from the past, also wrote to the email network of TBI survivors; We have lost a lot -- we have lost our self. The person we knew we could rely on to get us through the day or tough times. We have lost our self-worth, identity. Who am I? is a big question. Part of us is missing. (Ms. Ford, personal communication, June 21, 1995).
64 Informants The sense of loss of self involves not just the person’s memory but also the belief about one’s identity as well as the emotional appraisal of the self. It can be experienced in various aspects of TBI survivors’ daily lives. Before describing the categories and concepts found about loss of self, I would like to provide contexts for those findings. This chapter will present brief summaries of the primary informants’ narratives about their backgrounds, experiences after the accidents, present concerns, and future prospects. These summaries have two functions for this dissertation. First, they will provide readers with an overview of the informants’ perspectives on their lives while making readers familiar with the informants. According to Conrad (1990), the grounded theory method, which I used for this study, tends to lose each informant’s face when it decomposes the data into codes in the analysis stage. This chapter of the life-stories is a safeguard against this drawback. Second, these life-stories will serve for a measure to check the “validity” of my data analysis presented in the following chapters. One of the strategies to increase the rigor of qualitative research is to present the findings so that readers can falsify them (Kvale, 1995; Sandelowski, 1986). These life-stories represent the contexts in which each remark of the informants was produced. Readers can see whether my interpretation fits the contexts by comparing it with these life-stories. The following are the summaries of life-stories told by the primary informants, with whom I conducted face-to-face interviews. Objective information mentioned in these stories, such as their ages and employment status, was accurate at the time of my interviews. The rest of the descriptions was constructed from their self-narratives. Concerning the lives of other informants, I will refer to the information in the following chapters as the need arises.
65 Informants Ben Ben was a 32-year-old, single, white man who was brain-injured in 1981 at age 20 when he was drunk and fell down from the second story of a building. Ben was raised in a “dysfunctional family” in which both parents were alcoholic. In his teens, he abused drugs and alcohol. He graduated from a high school and studied in a university for a while. When he had the accident, he was a “manager” of a parking lot. He recovered consciousness in a nursing home and received rehabilitation training there. He did not like to stay with old people, but he thought he had no other choice. He sometimes escaped from the nursing home and drank again with his friends. He was then sent to out-of-state rehabilitation institutions to improve his speech, walking, coordination of the limbs, and memory. Meanwhile, he stopped drinking because he felt that he really needed to. After a few years’ stay in the institutions, he came back to his hometown since he thought that it had more convenient public transportation. His functional changes were much improved by then. He lived in an apartment independently, which was located on a bus line. His main income was money from Social Security. He managed to live on that money although he found that he spent too much for unnecessary food. Although he still had a problem of balance and required a wheelchair, he was accustomed to going to many places in town by bus. He liked interacting with people at restaurants, coffee shops, or the independent living center in that city. He also attended local AA meetings regularly and continued to be away from alcohol. He was proud that he had been sober for eight years. He wanted to have a girlfriend, but he felt he was not ready for it. One of the reasons was that he could not control his behavior toward women at times. He was once alleged to have sexually harassed a female staff member of the independent living center. Another reason was that he was unemployed. He hoped to get a job as a teacher’s aide in the near future.
66 Informants Don Don was a 50-year-old, single, white man, who had a car-tractor trailer accident in 1986 when he was forty. He was born in a large city and grew up as a “street kid.” He received only a 5th grade education and had some difficulty reading and writing, but he learned how to survive on the street. He did not trust anybody but himself and did “whatever it takes to survive,” including robbery and threats. In 1965, he joined the US Army and fought in the Vietnam War, and then traveled to Asian countries as a deckhand in the Merchant Marines. He “killed whoever [I was] told to kill and did whatever we had to do” in the service. After coming back to the U. S., he worked for the county as a janitor for thirteen years, but this career was discontinued by the accident. Don neither remembered how the accident had happened, nor felt that he needed to remember it. What he recollected was that, while he was unconscious, he had met “somebody” who had changed him by taking “all the violence and hatred” from him. After he regained consciousness, he had felt himself to be a new person with a peaceful mind. As the person had predicted, his life had changed since then. He had gotten his own apartment and kept a good relationship with Alice, who was a woman with a more severe brain injury. He loved and trusted her, saying “She is all I have.” The accident did not bring only good things to Don. Soon after the accident, he began to have difficulty with memory, attention, and emotional control as well as gaining much weight. He was fired because he could not stay in one place but tended to wander while working. Since then, he had been living on money from Social Security. He sometimes did “stupid things,” such as shop lifting, speeding, and shouting at people. He tried to control himself by talking with a
67 Informants psychiatrist and through meditation or some other techniques. These strategies worked at times, but not always. He said that people in the apartment building called him crazy and that the office lady told him to move out. He had given up negotiating with her and was looking for a new place. Ed Ed was a 49-year-old, married, white man who had sustained brain injury in a motorcycle accident three years before, in 1993. He worked for a gas and electric company at the time of the accident as a maintenance mechanic. He did not remember what had happened for a few months before and after the accident, but he did not care about it. After the accident, he was in coma for about two months and then recovered awareness at a rehabilitation hospital. At first, he could understand neither who he was nor who other people were, but he came to recognize them with the help of his family and the rehabilitation staff. He received physical, occupational, and speech therapies there, which he said were very helpful to him. After discharge from the hospital, Ed continued to receive therapies for five or six weeks as an out-patient, and eventually returned to his previous job. He took a job of meter reading a little later when his department was down-sized. He still tended to talk too much, which made communication with people difficult at times. He also had some functional changes in his memory, emotional control, and physical strength, but he could manage to do his job and found it fun. Ed worked at home, too, to maintain his house, such as mowing the lawn or fixing the door. Such jobs sometimes frustrated him because he could not do what he had been able to do before the accident. However, he attempted to understand his changes and not feel sorry for himself. When he came back from the hospital, his family was watching him all the time, but
68 Informants now he had more freedom. He liked walking in the woods, where he could enjoy nature and talk with God. He used to hunt animals there, but he just appreciated the nature at present because death of any creatures made him sad. Fred Fred is a thirty-year-old, divorced, white man, who suffered a serious automobile accident in 1984 when he was twenty. He was looking for a job after dropping out of his high school when he had the accident. According to him, he abused drugs and alcohol and played around with his girlfriend and other friends. On the day of the accident, he was found lying on the side of the road. People who found him supposed that he was dead and put him in the morgue. One intern at the hospital happened to find him alive and took him to the ICU. He opened his eyes after one month and began to understand what was going on little by little. Before long, he started rehabilitation training. He enjoyed physical therapy, through which he recovered his strength and became accustomed to walking on the prosthesis for his amputated foot. He did not receive any therapy or training for his mental or psychological changes. His long-term memory loss about his father still bothered him. After two and half months of hospitalization, he was discharged even though he continued the physical therapy sessions on a regular basis for three years. He found it difficult to do many everyday tasks, such as money and time management. He did not know what to do and where to go to receive further assistance. He tried many things for himself to return to the society, but in vain. Meanwhile, he went to many agencies for their assistance, only to become dissatisfied with the system. He also got married, and yet his marriage did not last long.
69 Informants Although he did not touch drugs any more, he drank alcohol from time to time to forget the feeling of frustration. In 1994, he had an opportunity to go to a community college and learned business management, which he had always wanted to learn. He also began to participate in a local TBI support group. At the time of the interviews, he was planning to establish a new business, which was a referral service for people with disabilities. He examined the plan from every aspect to ascertain whether the business would make a profit. He was also thinking of going back to a college to finish his degree. Jack Jack was a 27-year-old, single, white man. When he was a college junior in 1986, Jack sustained a brain injury in a traffic accident. He was raised on a big farm as the first son of a middle-class family. After graduating from a local high school, he moved to a big town to attend a university. His major was at first engineering, and later he changed it to law. On the day of the accident, he drove his car and went on a highway, but he had no recollection thereafter. He recovered consciousness after one month of coma, and began his rehabilitation training. He regained his abilities to walk around without a cane and to talk in an intelligible way as a result of the training. However, he could not get back proper control of his right hand, and his short-term memory was still a challenge. When he was discharged from the rehabilitation hospital, he went back to his parents' house and found a job classifying files at a garden equipment store. A few years later, he left their house and started to live alone, first under supervision of a professional, then without supervision. In the meantime, he quit the first job and found another job pushing carts at a supermarket. He wanted to
70 Informants make his balance better while doing this job. When the first interviews were conducted, he was again thinking of quitting his job with the hope of attaining a more interesting position. Three years later, a supplementary interview session was held. Jack was, then, unemployed and looking for a new job. He had nothing special to do every day, but came to the Learning Center at times and joined the activities, such as a session of navigating on the Internet. He also joined a “psychosocial club” organized for individuals with mental illness and made some friends there. Karen Karen was a 24-year old, single, white woman who had an automobile accident three years before. Karen grew up in a large, middle-class family in which she had five brothers and sisters. Before the accident, she worked at a furniture factory, where she polished the products with sandpaper. She liked that job very much. One evening, she drove her friend’s car with a learner’s permit and had an accident although she did not remember it at all. After two weeks of being in a coma, she found herself in a hospital, where she received intensive rehabilitation training for four months. She liked most of the therapies because they were helpful in letting her go back home. She regained her long-term memory, speech, body balance, and walking, although she still sustained residual challenges, such as short-term memory change and hearing loss. Karen, then, came back home and resumed living with her family. She could not get back her previous job at the furniture factory, but she found a part-time job for herself at a pet shop a few months later. She worked there for about a year. More recently, she began another part-time job at a pizza restaurant. She made dough there three days a week with the help of her job coach. Although she was not happy with excessive demands from her boss at times, she was basically satisfied with that job. She liked to get a paycheck every week and saved the money for her future. For the rest of
71 Informants the time, she mostly stayed home with her family, who were like her friends. She also saw her boyfriend from time to time and talked with him. But she wished to make more female friends her age. Her dream was to find a more interesting job and to get married someday. Lisa Lisa was a 54-year-old, white woman who had sustained a car accident in 1968 when she was 26 years old. She was a housewife with two babies at the time of the accident. Although she had sporadic memory about what had happened after the accident, she did not know how the accident had occurred. She regained a continuous memory in a hospital a few days after the accident. Then she was shocked to find that she could not do many things that she thought were easy, such as writing a letter and opening the cap of a toothpaste tube. She was, however, discharged one week later, without receiving any rehabilitation activities or education. Lisa lost her confidence in doing anything as she found herself to have many changes in her daily life, which included the fear of driving, depression, forgetfulness, and distractibility. She had no idea why these changes happened. As she recovered from her physical problems, her husband believed her all right and would not listen to her complaints. She felt she was inadequate and came to drink too much at times. It took her a long time to regain her self-esteem. When she was in her early thirties, she had an opportunity to take a summer course at a university. She lived alone for a few months, commuted more than 350 miles by car, and got a good grade. This helped her to restore her belief that she could do something. Then her family moved to another state, and she got a job at a model house. While she was working with real estate workers there, she felt that she would be able to do that job. She started to work as a real estate agent.
72 Informants Meanwhile, she continued to confront challenges in her life. She sustained depression from time to time though there was no event to be depressed about. Her alcohol consumption increased. She tried to control depression by medication and to quit drinking while seeing a doctor and a therapist. In addition, she continued to experience difficulty in staying focused on one thing and in remembering things. This difficulty made her feel that she could not earn enough income to live from the real estate work. She came to believe that she had been suffering from attention deficit disorder. Recently, Lisa quit the job and returned to school to become a rehabilitation counselor. She chose it for her future career because she had been interested in this field for a long time. She took a course on medical rehabilitation and wrote a research paper on TBI. She then found that many problems that she had experienced could be the consequences of her brain injury. Norm Norm was a 28-year-old, single, white male, who suffered a traffic accident 6 years before our interviews. When he had the accident, Norm worked as a sheet-rocker after graduation from his high school. He also loved to play sports, particularly basketball, baseball, and football. The accident put him in a coma for four and a half months. When he woke up from the coma, he started to “relearn” everything, including walking, talking, and reading. He stayed at a rehabilitation hospital to receive therapies for one year and eight months, and then he came back to his parents’ home. After a while, Norm decided to live independently and to move out of his parents’ home. He found an apartment and lived there for about a year, but he had a problem there with the landlord’s nephew. While Norm was on good terms with him, the nephew borrowed Norm’s
73 Informants money and never paid back. The nephew also misunderstood Norm’s speech and began to verbally abuse him. A few months before our interview, he finally moved to a new apartment in another county. It was far from his parents’ home, but he believed that he could have more rehabilitation opportunities there. At the time of the interviews, Norm visited the Learning Center five days a week, where he practiced typing and memory skills at times. He also enjoyed doing miscellaneous jobs for the Center and helping other consumers as he had always liked working,. He wanted to return to his previous job as a sheet-rocker, but he could not because his seizure disorder made it difficult to drive a car and to carry heavy building materials. He wished to get back a driver’s license and to find a job in the future. When the center was not open, he tended to stay home and watch TV. He did not have many friends around his apartment because he had been there just for a few months. Also, he did not know many places to do some sports with his limited budget. He presently lived on the SSDI and some support from his parents. He was not happy with this life style and hoped to change in the future. Richard Richard was a 45-year-old, divorced, white male. He had two accidents in 1987 and in 1989, which he believed to have caused his brain injury. Recently, the SPECT scan proved a functional change of his brain. Before the accidents, he was a successful businessman who ran a factory. He lived with his girlfriend and had a three-year-old son from his previous marriage. The first accident occurred when he was working out at a training center. The handle bar of a rowing machine suddenly came off, and he was thrown out on the concrete floor. He was unconscious for about 15 minutes. After this accident, he began to suffer many cognitive changes, such as memory loss,
74 Informants visual change, emotional outburst. When he was driving his company’s car two years later, he had the second accident in which he lost consciousness for about a few minutes. Then he found it more difficult to organize his thoughts and maintain his energy to work although doctors did not recognize these challenges. The company finally fired him. Since then, he has lived on his insurance money, his girlfriend’s support, and a small income from his photography job. A few years ago, he found his memory and visual changes recovered to some degree. He still struggled with the control of his residual functional changes, however, such as difficulties in carrying out his plans and in controlling his emotions. He wanted to receive proper treatment as some professionals still did not acknowledge his changes. At the time of the interviews, he was thinking of moving out to live alone and of returning to the sales job, but he did not have any concrete plans. He was involved in the Learning Center for people with TBI while helping the staff to set up the computers and joining the support group. Sam Sam was a 40-year-old, single, white man. He sustained a TBI in a motor vehicle accident five years prior to our interviews. Before the injury, Sam was a computer programmer who had a master’s degree in that field. He had experiences of working for some large companies and laboratories all over the United States. A few days after the accident, he recovered full consciousness in a hospital. He had some isolated recollections of what had happened, but they were not clear. He was moved from the emergency room to a rehabilitation hospital, where he went through a number of regular therapies to restore his functioning. He felt frustrated often in this hospital because he could not express himself due to a speech problem, and because the hospital staff did not understand his feelings. He told me that he had no happy memory about his early rehabilitation experience.
75 Informants One year later, Sam was discharged and returned to his own home where he had been living alone for several years. He continued rehabilitation training as an out-patient at a different hospital to address cognitive challenges involved with his memory and emotion. Simultaneously, he started to take courses in journalism and photography at a community college because he wanted to change his career. He found this new field more suitable for him than his previous career. At the time of the interviews, Sam was a graduate student majoring in photography at a university. The classes at the graduate level were big challenges to him, but he managed to keep fair grades so far. Also, he recently became the chair of the local TBI support group and enjoyed leading discussions at the monthly meetings. He lived on insurance money and Social Security, but he wanted to have a parttime job as a photographer as soon as possible.
76 Self-History
Chapter 4
LOSS OF THE SINGLE SELF-HISTORY
I discovered four interrelated categories related to the experiences of loss of self. The next four chapters will present these findings. In this chapter, I will discuss characteristic features of the narrative of self-history that many people with TBI carry. Self-history, or autobiographical memory, is a major source of one’s self-knowledge (Barclay, 1994; Neisser & Fivush, 1994). By constructing a coherent story based on one’s episodic memory, the individual, at least partly, maintains the sense of self. People with TBI, however, are not likely to have a coherent story but believe that their lives are interrupted in a complex way. The interruption takes two forms in their self-histories. The one is a temporary interruption; the individual considers that the accident that caused one’s brain injury temporarily interrupted one’s life. The other is a permanent interruption; the individual believes that life has changed completely since the accident. People with TBI often carry these two stories, and inconsistency between the two seems to contribute to their experiences of loss of self. This chapter will describe these stories while following the experiences represented in their self-histories. I will mainly use the data from the primary informants because the email data did not include detailed information about the self-histories of the informants. Parenthetically, I will quote the informants’ accounts as accurately as possible,
77 Self-History leaving interjections as well as grammatical errors. I hope these “verbatim” quotations will serve to vividly convey the informants’ accounts to readers. Temporary Interruption of the Self-History In the first half of this chapter, I will characterize the self-history with a temporary interruption. People with TBI often present their accidents as a temporary interruption of their otherwise continuous self-histories. They did have a sense of loss of self during the interruption period, but it did not continue until now. That period represents a depression in the self-history, which TBI and other injuries sustained in the accidents made for them. A memory blank is frequently located in the center of the interruption period, during which they were unaware, or little aware of themselves. Also, self-narratives of many people with TBI include a story in which they returned from that negative conditions. Even if the individual did not experience a memory blank, the return from a negative self-change is a common theme when he or she talks about his or her past. It is known that people want to preserve a sense of continuity in life to believe that their lives are orderly and consistent (Becker, 1993). Individuals with TBI, as well, seem to create the belief in order and consistency while constructing a continuous self-history. Being Aware of the Self Again Self-histories of people with TBI often include a narrative of recovering awareness of themselves and of the environments. The recovery of self-awareness may be a basis of constructing a continuous self-history. Depending on the intensity of impact to the brain, they may lose consciousness or have lowered levels of consciousness (Ponsford, 1995). Their responsiveness to external and internal stimuli is reduced, and they are unaware of the environments in the meantime. Also, they sustain a lowered level of self-awareness. They do not know who they are, and they do not even have a question of who they are. It is possible to say
78 Self-History that they are really in the condition of loss of self then, but this “loss of self” does not appear to them as an experience. Ed, for instance, went through a period in which he had no idea who or what he was. In his vague memory about the life in the rehabilitation center, he was watching a basketball game on TV on Saturday afternoon. He was conscious of the images coming from the TV screen, but he did not care who was receiving these images and why he was there to watch TV. He said, “I didn’t really know me... I paid no attention to me” at that time. People who sustained an unconscious period after TBI rediscover themselves and their environments at some point during the acute phases. Their narratives do not always give us a detailed account of this rediscovery, but some informants described it as a gradual process. For example, Linge (1990), as a psychologist, described his experience in which his self emerged again like this; I began to see that family, friends, and the hospital stuff were individual, not just shadowy, interchangeable figures. I began to realize that there was a separate person: “I,” although I did not know who “I” was. (...) Time began to have some meaning instead of past, present, and future combined into one seamless whole (p.119). It seems that his sense of self appeared in relation to his awareness of time, space, and others. Ed also told that his awareness of himself had occurred while he became aware of his family who visited him at the rehabilitation center. People with TBI begin to notice that something is wrong with them after they become aware of themselves. In their narratives, the informants found their bodily changes relatively soon. They also noticed that they were in unfamiliar environments. For instance, Jack woke up on a bed to see a tube inserted into his nose and to find his arms too weak to lift. Sam also found that he had a trache [a tube for tracheotomy] on his throat and had lost his voice. These bodily
79 Self-History and environmental changes are the clues for people to understand their situations. Some informants could conjecture that they were in a hospital for some reason. Sam even inferred from the trache that he had received an operation. Also, a few informants stated that they had misunderstood their situations. Ed said that, because he had been “locked in a wheelchair” and “strapped in,” he had suspected himself to be in a jail. Whether their reasoning is right or not, it seems that people with TBI start trying to understand themselves and their situations as soon as they regain their self-awareness. Reunion of the Past with the Present A memory blank after the accident is a common theme in the narratives of TBI survivors. The memory blank creates an unfamiliar situation for them in which they cannot understand themselves in relation to the past events. According to the literature (e.g., Bond, 1990; Schacter & Crovitz, 1977) a strong impact on the brain results in a period called “post-traumatic amnesia,” in which the person cannot take in any new information. Also the same impact can make the person lose his or her memory of events occurring a few minutes, or sometimes even several months or more, before the impact. This memory disorder is called “retrograde amnesia.” These blanks of memory make it difficult to construct a continuous self-history. When retrograde amnesia does not extend to long past, the individual can keep what is considered to be basic constituents of identity, such as his or her name and family background. However, one may still become confused if memory blanks are found, since one usually uses his or her recent memory in understanding the present situation. People with TBI who find memory blanks try to fill these blanks with information that they acquired from someone else. This strategy makes the self-history look more consistent and continuous. Also, some individuals with TBI believe something experienced during the blank period to be an encounter with death.
80 Self-History When they define themselves as “returners” from death, their present is reunited with the preinjury days through the fact of being alive. Filling the “void.” People with TBI may experience memory blanks as missing links that could connect the past with the present. Some of the informants had only brief unconscious periods (maybe ten minutes to one hour) and remember to a certain extent how the accident had occurred. There were no missing links in their self-histories. On the other hand, other informants found nothing in the memory that would explain why and how they were thrown into the unfamiliar situations. For example, Jack could not remember what had happened to him. He stated, I can’t remember clearly, you know. I remember driving to a throughway, but that’s all I can recall. It’s like a void or a black hole. (...) Just like a chalkboard. There is a blank until... I woke up from coma. It’s like someone took an eraser and erased my chalkboard. Jack told this experience rather coolly at the time of the interview. However, the discovery of the “void,” as well as the discovery of self-change, may upset the individual. Ed told me that it was a scary experience, for instance. Like everyone else, he usually understood the present situation in relation to the preceding events, but he could not connect anything to his memory. He even imagined that he might have been kidnapped by aliens or the CIA during the period of “void.” He was at a loss as to how he could make sense of the situation. The “void” in memory calls for information just as a real void absorbs air to fill itself. In the early stages of their recovery processes, many people with TBI begin to ask questions of other people to obtain information about what happened during the blank periods. The informants for this study who experienced the “void,” including Ed, Fred, Karen, Jack, and Sam, remembered asking questions of their families or medical professionals. These informants got
81 Self-History some answers right away and learned what happened and how it happened. This information allowed them to associate their present conditions with their accidents even though they could not verify these answers in comparison to their experiences. Some people may feel like getting more information about their accidents. Sam, for example, went to a library to make a copy of a newspaper article that covered his accident. He also visited the hospital to talk with medical professionals about what he was like when he had been carried in. The urge to find the details about the accident may be stronger when it matters who is responsible for the accident. For instance, Karen still did not know who had driven her friend’s car that night. She accepted, to a certain degree, the story that she, not her friend, had driven it with only a learner’s permit. But she suspected simultaneously that her friend might have fabricated the story to put the responsibility onto her. Thus, the question whether the accident was her fault would be answered by the missing information in her “void.” Some researchers suggested that this kind of information about responsibility is important because it may even influence the person’s acceptance of his or her functional changes after the accident (Bulman & Wortman, 1977). The “void” is not like a lost page in a history book. Rather, it may continue influencing one’s present sense of self. Incorporating the “void” into the self-history. The “void” becomes a part of self-history sooner or later when the person dissociates it from his or her present life in the narrative. Although people with TBI may be preoccupied with the “void” for a certain period, they come to lose interest in filling it as time goes on. They seem to incorporate the “void” into their selfhistories by discounting the relevance of its content to the present. Some of the informants were convinced that they did not have to remember the accidents. For example, Ed used to have a strong concern about his memory loss regarding the events before and after his accident. His
82 Self-History physician told him that the brain blocked out certain things that were too painful to remember. He accepted this explanation and tried not to care about the “void.” He said to himself that it would be meaningless for him to persist to the “void.” Some informants came to believe that they could not know every detail of the “void,” so there was no use continuing to seek information. As I mentioned above, Sam was urged to know the details about the accident for a while. After one year’s struggle to know what had happened in the accident, he thought, “You can’t get every little piece of information. Every detail and every fact is not so relevant nor important. Kind of like other things today is more important.” He seemed to change the meaning of the “void” while making it something similar to the childhood memory, which he could not, and did not have to, recollect. The individual can consider that a certain event in one’s childhood may be influencing one’s present. However, the individual usually does not much care about the inability to remember it unless one confronts a demand to explain one’s conduct in everyday life by going back to the past. Eventually, people with TBI restore continuous life-stories by filling the void with some information based on “objective” facts, hearsay, and guesses. Many of the informants were ready to tell when and how the accident had happened and how long they had been in coma, which were often crucial components in their self-narratives. For instance, although Ben sustained a memory change, he could give immediate answers to the interviewer’s questions about his accident of which he had no recollection: Interviewer:
When did you have the accident?
Ben:
September 13, 1981.
I:
Was it a very serious one?
83 Self-History B:
Well, I fell to the ground from the second floor, so I would think that was pretty serious.
I:
Were you in coma?
B:
For five and half months.
These pieces of information about the accident seem to play an important role in constructing a continuous life-story while ordering the events in a time-frame. They may constitute “timemarkers” (Roth, 1963) for the self-history of people with TBI. Besides, the factual information about the accident and TBI serves for the individual as a tool to associate with other TBI survivors. I observed that the informants frequently mentioned these “facts” when they introduced themselves to other participants at monthly meetings of the TBI support group. It seems that a self-history is not just private knowledge. At least, some part of it has an exchange value in the interaction with other people. Near-death experiences. Some individuals with TBI seem to get the sense of continuous self-history through “near-death experience” that they went through during the “void.” In this experience, they saw some symbols of death while having continuous self-consciousness. Such near-death experience may contribute to their beliefs in continuous self-histories. For one thing, near-death experience proves that they kept being conscious of their internal states even when they were unaware of the “real” world. They are connected to the pre-injury self through the continuous consciousness. For another, near-death experience provides a story that they returned from death and resumed their ordinary lives after they had an extraordinary experience. They are the same as they used to be in terms of the fact that they are still alive. Some informants mentioned “near-death experience” as an important part of their memory associated with the accidents. Richard, for instance, saw an image of death that looked
84 Self-History like amoeba while he was in a swoon. While he was lying on the bottom of the water, it formed over him “like the oil slick on water.” It, then, started to sink down toward him until it touched his body to make him furious with it. When he pushed it away from his body, he woke up and found himself on the floor of the gym where he had hit his head. Also, Lisa had a similar experience, which happened when she was carried by ambulance soon after the accident. She remembered; I think I’m going to, I think I’m going to leave. I’m going to die. I don’t wanna breathe any more. And uhm... just this really black, black sensation. And then, getting kind of a telepathic, very strong message that I couldn’t, that I wasn’t... to give up. I wasn’t to die, that I needed to be with my son, my son. I had important work I needed to do, somehow. The injuries that Lisa and Richard sustained were not life-threatening, but it does not matter whether they were really on the verge of death. The important thing is that they incorporated these stories into their self-histories as crucial components of TBI experiences. In these stories, they were certainly brought back to their lives while reuniting their pre-injury days with the present. Narratives of the Recovered Self The “void” as a memory blank is not only filled with a story of the accident but also embedded in a larger story that belongs to the self-history of the individual with TBI. Most of the informants in this study had a theme of recovery as a larger story, with the accident as well as accompanying negative self-images located at the beginning. Manifestations of this theme vary, but their self-histories came to represent a common pattern of the stable narrative because of this theme (Gergen, 1994). This pattern starts with a degeneration phase and, when it hits the bottom, changes into a progressive phase. This narrative pattern allows people with TBI to believe that
85 Self-History negative self-images were just temporary conditions in the past. They may also believe to have some constancy in themselves due to this narrative. The negative self as a starting point. The self-history after TBI often begins with the self that has negative characteristics. It is possible to find many negative statements when you examine the self-narratives of people with TBI about the time immediately after the injuries. When they resume everyday activities, they repeatedly encounter the changed selves that have become unable to do things that used to be easy. Some of the informants, for example, felt as if their bodies had been dissociated from their will. It was a shocking experience for them. After 25 years from the accident, Lisa still remembered the moment when she confronted her functional changes for the first time. She said, I wanted to brush my teeth and when I got into the bathroom and trying to take the... lid off the tooth paste. I couldn’t do it. So... I remember being appalled... not prepared for that. (...) There were a lot of things that I was... shocked to learn that I couldn’t do. When my husband arrived with reading materials and the, and the note paper, I couldn’t write. I couldn’t make my hand write. I couldn’t even read...I couldn’t make my eyes follow the line across. In this remark, her body was represented like tools that existed outside herself. This is similar to what Doolittle (1991) described about the experience of stroke survivors. She called this experience the theme of a passive, objectified body. The stories of finding functional changes are frequently accompanied by negative appraisal of the self. LaBaw (1969), for example, recorded his feeling about himself 13 weeks after his accident. He wrote, “My feeling was that I had been converted in one fateful moment, from a vigorous and productive man into a stumbling, exhausted, incoherent, incontinent
86 Self-History derelict...” (p. 176). In his self-history, this time seems to be represented as the darkest period. Lisa also said that she “had a tremendous decline in the self-esteem” for several years after the injury, being afraid that she might have become “pretty stupid.” That lowered self-appraisal petrified her so much that she could not do anything for a while. The negative statements like these are often followed by the theme of recovery in TBI survivors’ self-histories. Recovery as a directional move. The theme of recovery is expressed with some different comparisons or metaphors. As Kaufman (1988) showed with regard to stroke patients, the definition of recovery can be varied. This is also the case with people who have TBI. At least, the theme of recovery has various aspects in their experiences. The informants often described their recovery as a move in a certain direction. This is one of the metaphors that they adopted to refer to their recovery. Ed, for example, talked as if he had been in a different world after the accident. He said, “They [his family members] took me back together,” and the professionals “gave me the world to help myself.” Apparently, his recovery began with his move from that world to this world even though he could not make the move for himself. Also, when I asked the informants about their rehabilitation processes, most of them talked about positive changes of their bodily functions that had been impaired after the accident. To mention the positive changes, they made frequent use of words related to a spatial move, such as “come” and “go.” Ben’s accounts, for instance, included a phrase like, “My speech has come a long way,” when he talked about his speech that was becoming better. Jack also stated that he had “wanted to find a shortcut to get to the end,” when he remembered the training for walking. They seemed to imagine that they had moved on a road from one point to another. This movement represented the recovery for them.
87 Self-History In such an imaginary space that people with TBI have, the goal of the movement is frequently located above, with the negative self-image placed at the bottom. Sam, for instance, drew a pyramid when he described his self-history after his TBI. Its bottom indicated his functional status immediately after the accident, and its apex showed his pre-injury conditions. He added an upward arrow on the pyramid as he was stating that his bodily and cognitive functions had been restored in that direction little by little. This diagram seemed to reflect an image of recovery that not only Sam but many other individuals with TBI carried. Thus, recovery for them is like moving upward and climbing up to the physical and mental functioning before the injury, which might represent their own images of “normality” (Prigatano, 1995). Recovery as spatial expansion. The theme of recovery can appear also as an expansion of life space. For example, Sam expressed his recovery process not just as an upward movement. He said, I started to ride my bicycle again, uhm, gradually, a year after the accident. About six months after the accident, the first week or so, I managed to walk to stores to get a few supplies and came back. In the nursing care, they would supply for me medi-, medicines or food supplies. The first few months were difficult, but it... but you can make it to stores to buy newspapers, stop to buy anything. Then my life was expanding quite a bit. His recovery was reflected in an expansion of his field of activity that had shrunk as a result of the injury. Lisa also mentioned her success in long driving as a sign of recovery, which she said enhanced her self-esteem. Thus, the expansion did not mean only broadening the area in which they could move around. It was rather an extension of the lived space where they could exercise their free will to choose their own activities, such as going wherever they liked or buying whatever they needed.
88 Self-History Accompanied by the expansion of life space, people with TBI may shift the focus of attention to organize their activities in everyday life. For a certain period of time after the injury, they are mainly concerned about their functional changes as well as the accidents. Linge (1990), while recollecting his experiences as a TBI survivor, called this period the “stage of narcissistic preoccupation” (p. 124). After this period, people with TBI come to pay more attention to society and start considering what they can do there. Sam told me that, about one year after the injury, he finally shifted his attention from his accident and resulting functional changes to his future in society, for example. Jack did not know how long he was preoccupied with his injury. After almost ten years since the accident, however, he had “more emphasis put on my getting a job” even though he still sustained serious physical challenges. Both Sam and Jack started to assume the larger society to be the space for their activities while recognizing themselves as social beings again. Recovery as increased control of one’s life. In the narratives of people with TBI, another aspect of recovery is represented as increased control of their lives. This aspect often shows itself in the relationship with other people, particularly with rehabilitation professionals. When the informants talked about the early stages of rehabilitation, they described themselves as passive service-recipients. For example, Karen accepted therapies provided in the hospital although she did not really understand why the therapies were necessary. She made no complaints about them because she supposed that medical professionals “would help me to get better and back home.” Ben’s attitude toward medical services in the early recovery stage was more acquiescent. Whereas Karen accepted the therapies because she believed that the medical services were consistent with her wish, Ben obeyed the medical staff in spite of his wish. For instance, he was sent to several rehabilitation centers out of the state although he did not know
89 Self-History why. He seemed to assume that there were his “needs” that he did not know, just as he said, “There is a bit of difference, wants and needs. I didn’t want it, but I needed it.” The passivity of the individual with TBI toward other people tends to decline as the time is coming closer to the present in his or her narrative. A typical example is found in the data from Karen. Thus, after being discharged from the hospital, she chose to find a part-time job for herself without relying on the human service professionals. She said, They [the human service agency] may have to find something [a job] for me. I didn’t really like that they find it for me. So, I took out on my own and took a while, and I found myself, uhm, pet... a job at a pet store on Oxford Street over here. Uhm... I got that job on my own. I walked in there and... and I told her who I was, that I was in an automobile accident... Then she got a job and worked there for one year. It seemed that she was proud of this achievement not just because she got hired as a result, but because she did it for herself. This achievement was a sign suggesting that she was an active, independent individual who could make her way for herself without the help of other people. Other informants also found, at least looked for, a similar sign. Ben and Jack chose to live in a private apartment rather than a nursing home or parents’ home, for example. Thus, taking control of one’s life is another important index of the recovery for the individual with TBI. The Belief in the Continuous Self Several years or more after the injuries, many people with TBI come to believe that they have recovered to a certain degree. Though their definitions of recovery or “normality” may not be the same, several informants told me that they had come back to their “normal” conditions. For instance, Jack said that he believed his physical status was “back to normal” almost 10 years
90 Self-History after the accident. His uncoordinated limbs were still a serious challenge to his job-hunting. Yet he was at least healthy enough to live away from his parents, and he had little concern about deterioration of his functional status. Also, Lisa stated, “It probably took me seven or eight years before I... felt like I had kind of gone back and, you know, going back to where I was.” In spite of her difficulty in attention and short-term memory, she considered that she had achieved a “kind of” recovery when she got a job. With this type of narrative in which they have returned to the pre-injury state, they can believe in the continuity of the self. Individuals with TBI may be conscious of their continuity when they feel that they have regained or secured their previous identity. Ed, for instance, mentioned that he had always been such an honest and diligent person that people around him had trusted his job. He believed that he could be a dependable person again because “I’m pretty much the way I used to be, mentally.” Some other informants did not explicitly address recovery in their narratives, but they mentioned the belief that they had the same identity as in the past. Norm, for example, always liked to work and called himself a “workaholic.” In fact, I never saw him sit still without doing anything at the Learning Center for TBI survivors. He constantly moved around to help the staff to fix something or to assist other survivors who sustained more serious challenges. Even if the injury changed some parts of his functioning, he considered that what he valued was the same. Just as one TBI survivor wrote for the Internet support group, many people with TBI seem to believe that, “Inside you have the same soul and character that you always had.” Permanent Interruption of the Self-History Another type of interruption that people with TBI are likely to go though is discontinuation of self-history. In the second half of this chapter, I will discuss some aspects of permanent interruption of self-history. First, an extensive memory loss about the pre-injury life
91 Self-History contributes to the experience of discontinuity. A person with such a memory loss may feel that he or she is alienated from the self that existed before the injury. Secondly, people with TBI more commonly consider themselves to be changed permanently and their self-histories to be bisected by the accident. The theme of incomplete recovery often reflects this experience. Aged people have a sense of disorder and inconsistency when their self-histories look discontinuous (Becker, 1993). It seems that the sense of permanent change of self can give serious discomfort to people with TBI as well. Changed Memory of the Pre-Injury Life The life before the accident may appear differently to the individual with TBI. Gergen (1994) classified the self-narrative into the “micronarrative” and the “macronarrative.” The micronarrative refers to a narrative about a relatively short period of time, such as a story to explain a certain action of the person. The macronarratives is concerned with a broader range of time, such as a narrative about one’s identity from childhood. Experiences of people with TBI that I will deal with in this portion involve their “macronarratives” rather than “micronarratives.” The change in their macronarratives mostly comes from the “void” or memory blanks that extend to the distant past. Thus, the individual cannot remember clearly what he or she was like before the injury. As I mentioned above, this memory change is usually called “retrograde amnesia.” It may not allow the person to maintain his or her values or identity from the past. Also, people with TBI may experience the change of the look of pre-injury days even when they do not sustain retrograde amnesia. Lost memory of the pre-injury days. Some of the informants like Karen and Fred experienced long-term memory losses. In their early rehabilitation stages, they found that they could not remember their backgrounds as well as their accidents. Karen, for instance, had
92 Self-History worked at a furniture factory for three months before her accident, and she had liked that job very much. After the accident, however, she could not recollect what kind of job she had been doing, though she had a rather clear memory of her childhood. Inability to remember important personal events or facts does not only dissociate the person from the past. It may also influence the person’s interaction with other people and society in the present. Meltzer (1983), who lost some of his long-term memory after TBI, wrote, “I felt I lost some of my cultural background when I had difficulty remembering some of the customs, traditions, and beliefs of the groups to which I belonged. This produces a feeling of being somewhat alone” (p.3). Thus, a loss of memory from the past may mean losing the sense of tie with the present world. People who sustain memory losses about their pre-injury lives try to recover their memories in the rehabilitation processes, just as they do to their memory blanks about the accidents. Meltzer (1983), as well as Linge (1990), wrote that he had started his rehabilitation of long-term memory with reviewing his past life. He saw photos, read written materials about his life history, and talked with his family to restore the memory. Some part of the lost memory comes back spontaneously or with some help of the professionals or family members during early phases of rehabilitation. Among the informants, Karen said that she had restored her memory about her job with the help of her family and friends. It seems that people with TBI can reconstruct their past lives to a certain extent by using their partial memory, stories heard from others, and objective information such as photos or diaries. Some people never get back a considerable part of the memory about their pre-injury lives, however. If the memory loss is extensive, they divide their self-histories into two halves more easily. Fred, for example, was unable to recollect many events that happened before his
93 Self-History brain injury. Loss of the memory that really bothered him included things about his family and his childhood. He said; A lot of... things that I want to come back never did. Like my father. You know, the way I know that’s my father is because everybody told me that’s my father. For eleven years now, that’s dad because they told me he was. (...) I remember... parts of life. Yeah. Things that I want to forget, but... Like before the accident, how many, how much I was doing drugs, things like that. Things that I don’t want to remember! In his narrative, Fred’s life was interrupted permanently at the time of the accident, and its first half is estranged from the present. He also stated, “There is no similarity to, of who I am and who I was. I don’t know who I was. I don’t care I don’t know who I was.” It seems that he was living as a different person defining the accident as death of his previous self. Change in appearance of the past. I would like to add that an appearance of pre-injury life can be changed without an extensive memory loss. Some informants lost an emotional connection with their past, so that the past became alienated from them. Richard said, for example, that the sense of his past had gone since the first accident. Memory of one’s past ordinarily includes emotional contents that may make him or her happy or sad. However, Richard’s memory became something like “intellectual knowledge, not something I felt.” He also reported that he had lost the emotional bond with his son, which used to be very strong before the injury. Although he still loved his son, his love was more based on his “intellect” than on his “heart.” It seemed that the change in appearance of his past life also affected his present interpersonal relationship. Moreover, individuals with TBI may alter the way to see their past lives after their “neardeath experiences.” According to the literature on near-death experience, it can change the
94 Self-History person’s view of life (Flynn, 1984). This is true of some people with TBI as well. Don’s narrative gives us an example among the informants of this study. Just like Lisa and Richard, Don saw a sign of death while he was unconscious in the accident. The sign took the form of a holy person. He told me, Then somebody came to me and... I don’t know who he was. Could have been Jesus, could be anybody. Who the hell knows? But he was a different kind of person. He took all the violence and hatred. All the... all the things I ever felt were away from me. I felt like a different person after he left. But he gave me a choice, whether to come back or just to go with him... He chose to come back to this world to become a different man. Don’s “near-death experience,” unlike Lisa’s, was interpreted as the discontinuity of his life rather than the continuity. He now viewed his pre-injury days negatively in terms of his way of living. Thus, the appearance of his past had changed since the accident although he did not have any long-term memory loss. Changed Life Experiences After the Injury Among people with TBI, it is more common that the post-injury life, rather than the preinjury life, looks dramatically different in their self-history. Those who have a theme of recovery in their narratives often insert another theme of stagnated recovery at the end of the first theme. With the latter theme, they believe that their present lives are still under the influence of the brain injuries. Some other people whose brain injuries were not serious enough to cause a long unconscious period or an apparent functional change may not have the theme of stagnated recovery. They may think that they had been cured completely at least one time in their histories. However, a series of difficult or strange experiences make them suspect that their brain injuries
95 Self-History still affect them. In this case, the theme of permanent life-change turns up as being detached from the recovery theme. Facing the stagnation of recovery. In their rehabilitation process, many people with TBI face apparent limits in their recovery. Although they do not simply give up their hope of recovery, they come to believe that they will not be able to achieve complete recovery in a short time. The limit may be confronted all of a sudden. For instance, Ben recalled his physical therapist’s remark as a painful experience, in which she told him that he “cannot go any farther.” She might have commented only on a certain physical function of Ben’s. However, he seemed to interpret this statement as indicating that he, as a whole, would never be able to return to the preaccident condition. If recovery is like walking on a road to a goal, Ben saw a sign indicating that the road would be a dead end. On the other hand, some people with TBI become to have the concept of stagnated recovery little by little even though professionals keep encouraging them to maintain the hope. The individual may become aware of the possible limit of their recovery when their experiential changes persist for a long time. Mr. Peck, a 61-year-old man who suffered TBI from a fall, wrote, I remember sitting on the front stoop back in July thinking that I would snap back to being myself real soon. Well, it didn’t happen. Some time later, sitting there, I realized that it wouldn’t just happen, and I changed my attitude. It might take years, and will require my personal effort, both physical and mental, to regain what was lost. (Personal communication, February 2, 1995) It is known that recovery from TBI is most prominent for the first three to six months from the injury (e.g., Long, Gouvier, & Cole, 1984; Ponsford, 1995). Further recovery is possible after the
96 Self-History acute period, but the pace becomes very slow. During this post-acute period, many people with TBI seem to start thinking that they have to live with TBI while dividing their self-histories clearly into the pre-injury and post-injury lives. Recurring discomfort as a sign of life change. Individuals with “mild” brain injuries may pursue different courses to make a division of their self-histories. When the individual comes to have no visible signs of TBI, medical professionals and family members tend to think that one has completely recovered to the pre-injury self. The individual may also suppose so at least for a while. However, recurring discomforts or strange experiences, many of which other people do not notice, continue to disappoint the person’s supposition. For instance, Ms. Clark had been extremely disturbed by fluorescent lights at the office since her accident. She wrote, I have had trouble with - HATED actually - fluorescent lights in the last couple of years. Especially, it seems when combined with working on the computer. Someone once told me that fluorescent lights flicker, and computer monitors flicker, and most likely not at the same rate, and that can give some people problems. Some of the things that I’ve experienced since my injury are so hard to explain or define (even to myself!) that sometimes I just don’t understand what has been going on with me... (Personal communication, June 22, 1995) It seemed to her that the self was carrying something inexplicable during her post-injury period. Because of these troublesome experiences, she was obliged to regard her life and her self as changed since her injury. The continuous discomfort made her create the theme of permanent interruption of her life. Without knowledge of possible TBI symptoms, people with “mild” brain injuries may not associate their experiential changes with their accidents or brain injuries. Lisa, for instance,
97 Self-History sustained TBI in 1968, when much knowledge about TBI was unavailable. At the hospital, she received neither therapies for her impairment nor education about what functional changes she might experience. She continued to sustain depressive mood, difficulty in concentration, and forgetfulness even after she was discharged from the hospital. She thought that something was wrong with her, and her life was different in comparison with the pre-injury one in that she had that “something.” However, she could not associate these discomforts with her brain injury, and other people around her believed that she had already recovered from the accident. Only recently, she learned about TBI symptoms in a graduate course of rehabilitation counseling and realized that her brain injury had been always affecting her life since the accident. She now regarded herself as having TBI while dividing more clearly her life at the time of her accident. Many other individuals with “mild” brain injuries may be going through experiential changes that they cannot recognize as TBI symptoms because of the lack of information. Consequences of the Permanent Interruption of Life Those who divide their self-histories at the time of the accident have characteristic selfimages at present. First, they are likely to have doubled self-images; one is from the present, and the other is from before the accident. The accident is often conceptualized as death of the previous self. For instance, Ms. Ford, a college instructor who sustained TBI from two ski accidents, wrote a few times that she felt she had “died on the mountain skiing” (personal communication, June 16, 1995). This is rather different from near-death experiences that I described earlier. The lives are continued in most cases of near-death experiences, whereas the life is discontinued when the individual senses the death of the previous self in the accident. In addition, the accident is represented as birth of the present self. People with TBI sometimes
98 Self-History describe as new-born babies the selves that they had immediately after the accident. Among the informants, Norm and Fred used this rhetoric in talking about their past. Norm said, When I came out of the coma, shuu... Just like my mother had a new... Excuse me. Like my mother had another baby. I had to relearn the alphabet, relearn correctly to talk, relearn walking, relearn common sense... relearn a whole bunch of stuff. Norm was much different from Fred in the extent of functional changes, but their views of the accidents were similar. Second, individuals with TBI who divide their self-histories tend to value these two selfimages differently. People generally compare their present self-images with other people’s to understand their status and to find their identities. Individuals with TBI make a similar “social comparison” between the two self-images. It is usually their present selves that they negatively evaluate in this comparison. Especially when the person has a story of stagnated or incomplete recovery, one is likely to feel a lack inside oneself. The informants’ self-narratives were full of expressions that suggested the sense of lack, such as “I am not a whole person,” or “Some pieces are missing in me.” Thus, they divided their self-histories into two parts at the time of the accidents and devalued the second halves. Third, people with TBI come to understand their present selves in relation to their TBI. The informants tended to associate devalued characteristics in the present selves with the accident or resulting TBI. For instance, Karen sometimes mentioned, “Memory loss I had is from the accident. Loss of people who used to be friends, because of the accident. Loss of work, because of the accident....” She considered her accident to be the cause of her present conditions. Furthermore, some people with TBI may apply this causal linkage to their apparently ordinary experiences. Ben, for example, talked about his preference as if it had been a pathological one
99 Self-History that TBI caused although it could be a part of “normal” characteristics. He said, “I like to be on the move a lot. That’s part of my patience problem.” Thus, the present status of people with TBI, as a whole, can be seen in the connection with the injury or the accident. Concluding Remarks People usually have single, consistent self-histories, keeping certain identities in their lives (Gergen, 1994). However, many individuals with TBI have lost the single self-history. They instead have two stories about their past lives; the temporary interruption and permanent interruption of the self-history. They can be conscious of these two stories in their everyday lives. Thus, individuals with TBI believe that they are the same as before in some aspects, while they are different from before in other aspects; they are constant but changed. This is the reason why the same individuals appeared as examples in both of the above sections. It is apparently contradictory that the person is constant and changed at the same time. This contradiction seems to a basis for loss of self that people with TBI experience. The belief that the self is the same allows them to feel a possibility or a demand that they can or should perform as well as they could before. When they find that they cannot realize the possibility or meet the demand, they may have a sense of loss of self. This is true of people with other acquired disabilities as well; they carry two contradictory stories about their self-histories and experience loss of self (Wright, 1983). However, one can also see the uniqueness of people with TBI when examining their present experiences of self carefully. The following chapters will illustrate other categories of loss of self while clarifying further its unique features in the experiences of people with TBI.
100 Opaque Self
Chapter 5
THE OPAQUE SELF
In the previous chapter, I described the main characteristics of self-history that people with TBI have, as the basis for their experiences of loss of self. The subsequent three chapters will deal with other main categories that represent essential aspects of the loss-of-self experience: the opaque self, the devalued self, and the labeled self. In the first half of each chapter, I will describe the phenomenology of loss of self while providing several sub-categories or concepts together with the supporting data. The second half will present strategies and rhetoric that people with TBI use to overcome the loss. Readers will find in these chapters the individuality of the experiences of people with TBI, as well as their commonality to others with and without disabilities. I will introduce the category of “opaque self” in this chapter. The previous chapter described that many individuals with TBI carry in their self-narratives a story that they have changed since the accidents. They often attain no clear knowledge of how they have changed, however. It is not difficult to find in the narratives of people with TBI a statement like “I don’t understand myself.” For instance, when Richard talked about his functional change, he remarked, “I’m doing something very simple, [but I cannot do it]. I don’t understand myself. Like I’m overwhelmed or something, and I get confused... It’s real foggy about what I’m doing. I, I can’t
101 Opaque Self explain it.” It seems that the statement like “I don’t understand” often reflects their experiences of the “opaque self,” one of the major categories of loss of self that is abstracted in this study. Rehabilitation professionals sometimes suggest that it is important for individuals with disabilities to accept their functional changes, but TBI survivors may not know what to accept. As I mentioned above, the phenomenology of the opaque self will be described in the first half of this chapter. Then, I will present the strategies that people with TBI use to deal with the challenge of the opaque self. Phenomenology of the Opaque Self The purpose of the first half of this chapter is to discuss how people with TBI experience the opaque self in their everyday lives. Unlike such a simple bodily injury as a broken arm, functional changes after TBI are often difficult for the individual to understand. The individual is at a loss in front of a self that carries elusive and complex changes. While experiencing such functional changes, people with TBI may feel that they have another kind of “void” inside themselves at present, just as they carry “voids” in their self-histories. It is unpredictable and uncontrollable, and so it appears to the individuals as an opaque area within the self. Because of the opaque area, some people even feel that they are detached from the core of the self as well as the world and the future. Elusive Nature of the TBI-related Changes Brain injury results in a wide variety of symptoms, depending on the location and size of the injury (Heilman & Valenstein, 1993). This variety can be found not just in the objective symptoms of people with TBI but also their subjective experiences. Some of the functional changes accompanied by TBI are easy to find and understand, but some are not. It is possible to assume a continuum of TBI-related changes. On one end, they are obvious. The individual can
102 Opaque Self recognize the changes and communicate them without much difficulty. On the other end, figuring out what has changed in daily functioning is not easy. These changes are opaque to the individual with TBI. He or she sometimes finds it difficult to grasp them, mainly due to the lack of common categories and to their fluctuation. He or she sometimes does not know where the changes come from. The elusive nature of experiential changes after TBI seems to provide a basis for the experience of the opaque self. “Visible” changes of the experiences. Before discussing opacity in the experience of people with TBI, I will briefly describe “visible” changes that are unlikely to produce the opaque self. First, some functional changes are visible in a literal sense. People with TBI are able to see or perceive physical impairment, such as paralysis of the limbs. Except for those who have a special cognitive change in the awareness of their impairment (Prigatano & Schacter, 1991), the individual easily understands what he or she cannot do because of the impairment. It is not difficult for the individual to know the consequence of the impairment to his or her life. Ben, for instance, knew that he had to use a wheelchair due to the weakness of his feet and his balance problem. He always worried about the weather especially in winter because snow was a big obstacle when he wanted to move on the wheelchair around the town. Also, other people could see his impairment and were willing to help him by pushing the wheelchair when he asked them. No one would doubt the existence of such a visible functional change even if one did not link it to the brain injury. Visible functional changes are objective facts for both the individual with TBI and other people around him or her. Simple perceptual changes are also “visible,” even though they are so only to the individual who sustains them. For example, Ed sustained a loss of his sense of taste after TBI. It was a painful loss for him, but it was clear-cut. He said,
103 Opaque Self There was one thing with this accident that has not returned yet from this brain injury. For some reason, I have lost my sense of taste and my sense of smell completely. I taste nothing, and I smell nothing. This coffee is hot bitter liquid. I couldn’t tell you if it’s coffee, of if it’s whiskey? Well, whiskey is burning. It’s not whiskey. I don’t use alcohol. I couldn’t tell you if it’s hot chocolate, milk shake. I don’t know. There’s no taste... That was an experience of total loss of a certain sensation. As he repeatedly went through the absence of this sense experience, he could not doubt that he had this functional change. It was also obvious to him that this change came from the brain injury. He knew that the centers of taste and smell were located somewhere in the brain and that his experiential changes began after his accident. The visibility may be one important criterion by which TBI survivors classify TBI-related changes. People with TBI may wish to have such a visible change, instead of the one that they cannot understand clearly. Ms. Ford, who sustained many changes that were opaque to her after TBI, wrote, I could have dealt with much easier with a lost limb. It would be something that I could see. But a broken brain, no one can see... and I often forget I have it only to be abruptly reminded almost like someone punched me in the face that I am not whole. (Personal communication, July 19, 1995) The individual may easily perceive visible changes and understand their ramifications, but many changes after TBI cannot be seen or perceived. Even if the individual finds an experiential change in one’s life after TBI, he or she may not know whether it is really a symptom caused by TBI or how they can describe it. Other people around him or her, either, do not understand invisible functional changes from time to time, as I will discuss in Chapter 7.
104 Opaque Self Difficulty in categorizing the changes. People with TBI find it difficult to describe or categorize their experiential changes. Some informants tried to characterize their changes, but they were not always successful. This is the account that Lisa made to communicate her sense of confusion in a crowded place. When I get into crowds, I find [it] very hard. Not to just kind of wander off or get very distracted be... and almost feel confused and almost panicky. Not quite, but almost like I’m not... If I, if I’m with somebody and, well, like trying to get to, for example, a train station or a subway station or something, trying to get to some place... And this is a lot of confusion around... that I find very frustrating. And sometimes when I’m in a big place like I go to a museum or I go shopping in a mall where I’m in a store, I can wander off and forget where the person is. Although she was usually eloquent of her experiences, she could not find an appropriate word to explain this experiential change. She, in fact, went through a hard time in having her husband understand her functional change. Some functional changes after TBI are difficult to categorize as a “symptom” partly because each incident may not look like a “symptom.” Rather, it appears just a variation of normal functioning. Richard, for example, was disturbed by his experiences of forgetting something, getting lost, and having a daydream. These descriptions were not erroneous, but he did not think they were accurate enough to communicate his functional changes. They sounded like ordinary experiences that anyone could have at times, but he felt that there was some difference. He said,
105 Opaque Self I don’t do anything unusual. I don’t do anything that a normal person doesn’t do it. I just I just do a hundred times a day. These little lapses, once or twice a day, most people have one. But to me, it’s a way of life. For another example, Mr. Carr, who sustained a brain injury because of chemical intoxication, mentioned that his forgetfulness was discounted as minor slips by others. When he talked about it, they often told him, “It’s always been that way for me” (personal communication, September 14, 1994). Thus, other people may not regard some cognitive changes of the individual with TBI as objects of intervention even though he or she considers these changes to be serious TBI symptoms. The individual needs terms or expressions that indicate his or her experiences are qualitatively different from those of other people. In the TBI Support List on the Internet, the participants described their experiences and sometimes found good terms or categories that seemed to fit their functional changes. Mr. Carr, for example, wrote that he had “been trying for 4-5 years to explain” the strange feeling on his feet that urged him to move them restlessly. He finally found a diagnostic name and its definition when he read another member’s mail. He wrote to that member, “I’ll never be able to thank you enough” (personal communication, September 1, 1994). Another informant who sustained a brain injury because of a stroke, Mr. Randall, also stated that he had not known how he could describe his apparently strange experience (personal communication, April 1, 1995). In that experience, he became exhausted and had a “zombie feeling” when he was in a large crowd of people. He wrote that he could not find a good word for this experience until he encountered the term “sensory overload” on the list. Without reasonable categorization, the individual with TBI cannot communicate his or her functional change and find a way to avoid or overcome the challenge.
106 Opaque Self Fluctuation of the changes. One reason for the elusiveness of functional changes after TBI is that they do not show the same appearance over time. The perceptual experience of a lost limb would be relatively constant, whereas some symptoms after brain injuries can fluctuate frequently. As the individual cannot always see the same picture, one might well find it difficult to characterize and communicate the change. Don, for example, said more than once that his conditions, including mood, motivation, and memory, varied all the time. His daily activity was influenced by these conditions, so his behavior also fluctuated day by day. Mr. King, who had three years’ experience of TBI, also stated that his speech was sometimes good but sometimes bad, and that its deterioration came to him all of a sudden. One day, he was talking with an attorney. His speech was all right at first, and he thought that “everything was easy and under control.” However, “It was then I started [to have] trouble with my speech and started to have many speech errors,” he wrote (personal communication, July 18, 1995). Many people with TBI, thus, feel on one occasion that the change is slight enough to perform their activity just as they did before the accident. On another occasion, however, they see the change being so drastic that they cannot do anything that they could do before. Some people with TBI may describe the fluctuation of their functional changes in an orderly manner by dividing their lives into two. For instance, Ms. Thomas, who had seven years’ experience of TBI, classified her day into “up” time and “down” time. She wrote that, when the “down” time came, “the fatigue slows me down... I do less... activity becomes even more tiring... sort [of] like a snow ball” (personal communication, October, 1994). She heard from other survivors every day as the editor of a magazine for TBI survivors. Out of this experience as well as her own experience, she concluded that many survivors had only 4-6 hours of “up” time a day. The fluctuation of the cognitive function was also obvious in Mr. Carr’s daily life. Given the
107 Opaque Self understanding of this fluctuation, he tried to do as many things as possible while he was in the “up” time (personal communication, September 4, 1994). Charmaz (1983, 1991) found a similar theme when she studied people with chronic illnesses. They had “good days” on which the illness minimally influenced their daily activities, whereas they had “bad days” on which their activities were much limited because of the illness. Some people with TBI seem to understand their time in a similar dichotomous framework. Doubts of one’s “reality.” Individuals with TBI may attribute the elusiveness of their experiential change not only to its nature but also to their ability to perceive it. They are afraid that they may overlook something important, just as they are unaware of things that fall in their “blind spots” on the retina. Some informants doubted that they accurately saw “reality.” They also feared that they might deny the “reality” because they wanted to feel comfortable with themselves. For example, LaBaw (1969) remembered that he had talked for a certain period of time as if his brain injury had not been serious. He, as a psychiatrist, called this a symptom of “denial.” He felt that he had carried “the occult confines of the necessary inside track” (p. 176), rather than his mind. The mind appeared to be like a black box to him, which was detached from him and did not allow him to see “reality.” Even if the term “denial” is not used, the individual may suspect that his or her “reality” may not be shared by others. Lisa was one of the most sensitive persons concerning this point. She said, “Something I’m very much aware of right now is to continually check my reality with other people. Am I seeing this right? Or is this misperception on my part?” She knew that the “misperception” of reality could bring many problems into her interpersonal relationship as well as into her job. Also, some people with TBI are not confident with their thinking processes through which they construct their reality. For example, Meltzer (1984) wrote, “Thinking
108 Opaque Self becomes a real effort (...) The slightest distraction may mean that you have to remind yourself of what you are thinking. Soon you become reluctant to reason something out” (p.4). Ed was also uncertain that he really understood the “reality” of what he could do and what he could not do. He said he had a “problem of judgment,” and so he sometimes needed other people’s help. Two Types of Opacity As they go through the experiential changes after TBI, people sometimes feel that they are carrying some opaque areas inside themselves. The self may seem to be unintelligible because of this opacity when they say, “I don’t understand myself.” If they have the understanding that they have injuries on the brain, it is not difficult for them to locate opacity inside themselves since the brain exists inside the body. The self-narratives of people with TBI suggest that this opacity appeared in two ways. It can be a negative force that bars or restrains their actions. It can be a positive force, too, that urges them to do certain behaviors beyond their intentions. Opacity as a negative force. People with TBI may feel that something inside themselves interferes with their actions. Their mind or will is somehow dissociated from their bodily performances, and that an opaque area stands in the way. This opacity is a negative force against their actions. Some informants referred to this negative force as if it had been an entity that existed somewhere in the self. One example could be found in email from Ms. Turner, who had sustained TBI four years before. She wrote that her “cognitive overload” was like a creature that “feeds on itself” to grow until it came to hinder her activity (personal communication, October 18, 1994). This comparison gives us a vivid picture of her experience. Other people may talk about the negative force more indirectly without using such visual comparison, but they still feel that something opaque makes it difficult for them to form or execute their plans.
109 Opaque Self To some people with TBI, opacity appears when they try to carry out their plans of action. A simple example was in Jack’s experience of his arms, which were not paralyzed but “uncoordinated.” They shook especially when he attempted to do something with his hands. Thus, as soon as he started to reach a cup or to write a letter, his arms trembled as if to harass him. Also, this difficulty fluctuated beyond his control. He said, “At times it’s all right, but at times not. Strange....” It seems that this fluctuation made him feel his arms more strange and dissociated from him. In addition, Karen’s narrative included a different kind of dissociation between her will and her performance. She said that tears did not come up after the accident even when she felt sad and wanted to show her emotion. Thus, her emotional expression was barred by something opaque to her. Whereas Jack and Karen felt opacity between their will and performances, some other informants’ opaque areas were located somewhere within their minds or will. Thus, they felt that something inside themselves hindered their actions in earlier phases of the process through which they realized their actions. For instance, Ms. Kline, who had sustained a brain injury because of a stroke, wrote about her motivation. She felt that her motivation became “fossilized” immediately after it was generated. As a result of this “fossilization,” she continually had senses of “apathy and indifference” (personal communication, July 6, 1995). Lisa also felt that her emotions were detached from her or her situation. She said, I have on-going problem with depression. And it wasn’t until... later, that I realized that it was related to this [brain injury], that I hadn’t really had that bad depression when I was in high school and college. Although there were periods of time I was depressed, uhm, I could more relate it to the things that were going on then, like my father had a terminal
110 Opaque Self illness. But this was like depression when I ought to have nothing to be depressed about. You know, I had a beautiful baby and... you know? Both Ms. Kline and Lisa objectified their emotion and made comments on it. They did not seem to experience it as their own emotion, but as something alien to themselves that restrained their actions at the beginning. Opacity as a positive force. Some people with TBI experience opacity not only as a negative force but also as a positive force. To put it in another way, they feel as if they did something before they knew it, or as if some force made them to do it against their intentions. This type of opacity is often associated with emotional changes after TBI. More than a few informants went through a fit of anger that was difficult for them to control. For instance, Richard could not stop shouting and yelling at his friend when that person made him wait for half an hour. He remembered, I started, started like this, talking to him. But I got more and more worked up. You know, I’m like, “Damn!” You know, I’m... Then I even turned on him and yelling at him. I said, [loudly] “I can’t stop this! You’ve got to get out quick! I cannot stop this!” And... uhm, it’s like that something clicks [snaps his fingers], and I’m unable to stop my anger and rage. Of course, anyone can be angry if someone else makes him or her wait for half an hour without a reasonable account. Before the accident, however, Richard had been able to control his emotional expressions even in such a situation. Fred had also been struggling with his emotional outburst since his TBI. He said that everything suddenly came to look red and that he would “get mad within a second.” His concern was that he might hurt someone or break something when he was angry. He made efforts to watch his behavior even though he could not control his emotion.
111 Opaque Self For instance, he recently became furious with his female roommate. He grabbed her head with his hands and watched them so that the hands would not hit her. It was as if his body parts, as well as his emotion, had been detached from him though they were certainly part of himself. Opacity as a positive force may involve more complex actions, as appeared in Don’s selfnarrative. One day, he discovered a brand-new pack of aspirin in his coat pocket. True that he needed it, but he had no recollection of buying it. That was not the first time. He believed that he had shoplifted it without his knowledge. He said, It depends on the mind, depends on what I’m feeling that day. If I don’t have the money to play the lottery, I will steal it. If I don’t have the money for gas, I’ll steal it. Up and down. But, but I don’t... I don’t know what I’m going through. I don’t know who I am, what I am. Sometimes, my mind goes blank, and I just do stupid shit. Then I don’t remember doing it. Maybe his previous self or its behavioral tendency that he had disowned at the time of the accident was still alive, but he interpreted this incident as a dissociation between his mind and body. He sometimes stated, “The mind tells you one thing, and the body tells you another.” Thus, “his body” behaved independently of “his mind” with the “stupid” behavior. He felt that, since he had no control over that behavior, it was not his fault. Simultaneously, he understood that other people would not agree, supposing that nobody but he did it. This contradiction between his view and theirs made him confused. When the sense of a positive force is strong and constant in experience, the individual may develop an idea that the self is occupied by someone else. Let me continue to describe Don as a good example. He went so far as to substantiate or even to personify opacity and stated that he felt as if someone had controlled him from the inside. This “someone” was an entity that co-
112 Opaque Self existed with him in his body, as he said, “It’s like having two people in one body.” He was usually a master of himself, but the other “person” dominated Don’s body at times. When he talked about his occasional speeding, for example, he said, “It’s like some other person or some other thing takes over. You’re a different person.” Meanwhile, his “true” self was pushed aside, and he felt, “I’m like a visitor here, my body.” When he lost his agency and control of his body, it seems that opacity as a positive force was maximized in his sense of self. Expansion of the Opacity Opacity does not stay within the individual but can expand. People with TBI may feel themselves not only carrying opacity inside themselves but also being opaque as a whole. They tend to be at a loss to understand themselves when their experiences are unintelligible in reference to their common sense, for example. Moreover, opacity may expand through space and time when they interact with the world. They may feel that they have no idea what they can do and cannot do in society. They also may not know what they will be able to do in the future. This does not mean that opacity within the self causes the opaque environment and the opaque future. Rather, these types of opacity are different aspects of the same experience. Opacity of the entire self. People with TBI frequently feel that they have become unintelligible and strange as a whole rather than in their particular aspects. The self looks opaque, and they do not know how they can understand and handle themselves. The informants sensed opacity of entire selves when they could not explain their experiences with common sense and knowledge. For instance, Richard planned several things on that day, which included calling his psychologist, and taking his photography stuff to a dark room, and going to buy automobile parts. He knew each item was very simple, but he could not figure out how to begin the plan. He stated,
113 Opaque Self I made this list [of what to do on that day]. I looked at it. I started walking around the house. I wanted to do something, but I didn’t know what to do. I come back, look at the list. I even sit down and call. I had to call her [his psychologist]. Uhm, call this person. Look at, look this, call, look, and look for something. I even do that. That I wanna do. But I don’t know what to do. So... so I ended up spending the whole day walking around the house and coming back and looking at this list fifty times. There may be a mental procedure to start a plan, but it is not like a procedure to cook food. Whereas the latter can be described with language, the former is difficult to articulate because one ordinarily starts a plan with little conscious effort. It seems that people with TBI often experience a challenge in such a mental procedure as cannot be articulated with ease. The self may look more opaque when the individual takes other people’s standpoints to understand him or herself. For instance, Ms. Turner, who could return to her previous job of systems engineering after her TBI, was not able to choose one dish from a restaurant menu. She was puzzled to find that she could not do apparently easy tasks while being conscious of her boy friend’s eyes. She wrote, My boyfriend never can understand how I can go to a lecture on computational linguistics and follow it and not be able to select from a menu or choose a salad dressing. I can’t say that I understand it any better than he does, but since no one will hire a person just to read a menu, and someone may hire you if you can follow the lecture on computational linguistics, I guess it is better to have trouble with the easy stuff than with the hard stuff, but it can be a heck of a lot more annoying. (Personal communication, September 15, 1994).
114 Opaque Self People have commonsensical knowledge that this task is more difficult or that one is easier. Ms. Turner felt that her experience was “strange,” in reference to this knowledge that she maintained. At the same time, this feeling seemed to be intensified when she believed that other people would also feel it “strange” while referring to the same knowledge base. As the “strange” experience repeats itself, people with TBI may find it difficult to know what to do with themselves and even to define who they are. Ms. Ford, for example, wondered what person she was now when she had an experience of becoming exhausted in a crowd over and over again. She stated, “I still, after two years, am trying to redefine myself. I don’t know this person any more. She is not reliable and cannot be trusted as my best friend” (personal communication, September 12, 1994). In this remark, she called herself “this person” as if she had been the third person. It seems that she felt herself like a stranger whose inside she could not see and whom she could not control freely. Thus, the whole self can appear as something opaque to the individual with TBI, and he or she feels estranged from the self. Opacity of the environment. When people believe that they carry an opaque area or that they have become opaque as a whole, their surroundings may come to appear alienated from them. They do not know what they can do in their environments, and they are even afraid that they might be able to do nothing there. In other words, their environments, as well as their selves, become to look opaque. In this portion, I will mainly focus on their physical environments. Opacity of social environment is another important issue, but it will be discussed in the next chapter. Many people with TBI feel that their environments refuse their manipulations or provide few opportunities for their activities. For example, some informants reported that their surroundings looked more disorganized, being accompanied by their cognitive changes. Ms.
115 Opaque Self Clark, who lost the control of her short-term memory after the accident, found that her surrounding was not as it used to be. She wrote, “I get frustrated as heck when I can’t find things - or regularly have to waste time searching for them - due to our never ending clutter and disorganization” (personal communication, July 14, 1995). Also, Ms. Thomas stated that she felt uncomfortable in traveling in a car now due to “too much action (sound, motion, vibration, movement, light)” (personal communication, September 3, 1994). It did not seem to them that their environments supplied stable and secure spaces any more. Rather, they felt that the environments restrained their activities. Ms. Ford described herself even as “a prisoner from the outside world” (personal communication, March 31, 1995). This expression clearly represents the view of the environments that people with TBI are likely to have. The worlds in which individuals with TBI live can be different from the past ones in terms of the emotional characteristics, as well as the cognitive characteristics. Ordinarily, the world appears to the person with a variety of emotional value, according to which it attracts or repels him or her. People with TBI may feel that their worlds have lost such an ordinary value structure. For some of the informants, things in their environments looked flat and dry without any value. Meltzer (1984), for example, stated that he could not enjoy watching TV, movies, and sports, as well as reading books. He was unable to remember what had happened before in the story or in the game because of his short-term memory change. Mr. King, who had worked as a piano tuner before his TBI, also wrote to the TBI Support List, “I could not listen to music as it had no meaning to me” (personal communication, June 15, 1995). It seems that Mr. King’s world, as well as Mr. Meltzer’s, lost its attractiveness. For other people with TBI, the environments may acquire more negative value that makes them keep away from it. Richard, for
116 Opaque Self instance, had “a sense of dread” about going out of his house, and so he could not do anything in the outside world. Thus, his world had become a scary place, and he could not understand why. Opacity of time. Individuals with TBI may discover opacity in their sense of time together with opacity of the environment. A human action involves projecting the present self to a future goal. The goal can be a very simple one, such as reaching the hand to an object, or a more complex one, such as finishing a project by the deadline. When the person has opacity in oneself, whether it appears as a negative force or a positive force, one’s action also carries opacity. Some of the informants felt uncertain about whether or not they would be able to achieve goals with their actions. Linge (1990), for instance, remembered his life after TBI and wrote, “My life for the past 12 years has been a highwire balancing act requiring constant effort and vigilance to get from each day’s beginning to its end” (p. 117). He had been wondering when, where, and how he would make a mistake or give trouble to other people, but he had obtained no exact answers. Like walking on a “highwire,” his conduct in everyday life had always carried uncertainty. The time ahead of him carried it, as well. Many informants stated that they could not make a future plan because something inside interfered with their planning. Norm was not an exception. He had a seizure disorder besides some cognitive changes, which limited his present and future activities. He lost his job because the seizure disorder did not permit him to drive a car or to lift heavy materials. He said, “I might possibly need for a... a new occupation. I have no idea sure, though. (...) There are many things to consider, and I know it can’t be very strenuous.” His seizures were controlled by medication considerably, but not completely. He now had something to do at the Learning Center for TBI survivors, but his future was still invisible and opaque. Ben also felt that he could not make his future plan due to opacity within himself. He said,
117 Opaque Self My lack of memory is one thing that prevents it [the future planning]. My correlation skills are not all that good. (...) Correlating... that means what I should do at a proper time, now and then, in between, or something like that. I may forget about it. And... I may have too many things in my mind, or something like that. The future appeared to him something that he could not see from this point of time. Although he made a plan for today and tomorrow, he was not able to imagine himself in the distant future. Facing the opacity of time, individuals with TBI may give upforming a future plan. Don and Ben, for example, said that they were just concerned about going through or “survive” each day (Don) without giving “any serious thought about the future” (Ben). Without a future plan, some informants reported that they felt themselves getting lost in time. Ms. Thomas, a member of the TBI Support List on the Internet, stated, I lost not only all the work and effort I had invested in my life up to the day of my accident... I lost the potential and the possibilities that went with it. The momentum was gone and, in a flash, I was adrift. Adrift is not a nice feeling. (...) To realize that I would have to start over again but with less skills than before was overwhelming. (Personal communication, April 5, 1995). People often consider that the present is a step to attain a goal in the future. When the goal is lost, they may be unable to locate their present in a time perspective. It seems that many individuals with TBI are forced to live with rather different senses of time, contrary to their wishes to locate themselves in clear time perspectives. Dealing with the Opaque Self The second half of this chapter discusses how people with TBI overcome, or try to overcome at least, the self that has come to look opaque. They may attempt to incorporate
118 Opaque Self opacity into their self-images by using some kinds of rhetoric. Having an opaque area inside the self, however, produces a feeling of insecurity, anxiety, or discomfort. People with TBI attempt to deal with this feeling by describing and explaining the opaque area. This would serve to give a shape to that area and to decrease the opaque nature of the self. As a result, the individuals may acquire clearer knowledge about what they can and cannot do in everyday life. They also attempt to have control over the opaque area so that they can restore the privileged status of directing themselves. If they successfully control the opaque area, it will not be opaque any more, and the self will regain some understanding of themselves. Living with Opacity The narrative of people with TBI sometimes suggests that they incorporate opacity into their self-understanding. Some people believe that the opaque areas are undeniable “reality.” For instance, Karen explicitly said, “Since this [functional change] is already with me, I have to take it and live with it.” Some people accept opacity because there is no other choice, just as Jack stated, “You must sometimes go on, whether it be something you like or you don’t like.” This may reflect one of the teachings in the Bible. Mr. Chase, who had a 37 years’ experience of a brain injury, articulated this teaching to advise another member of the Internet support group. He wrote, “God grant me strength to change what I can change, the grace to accept what I cannot change, AND THE WISDOM TO KNOW THE DIFFERENCE” [the emphasis is his] (personal communication, April 5, 1995). In order to live with opacity, people with TBI seem to use this rhetoric based on their cultural tradition. Another rhetorical tool to accept opacity may involve the belief that others share the same experience. Some informants believed themselves not to be alone when they saw and talked with other TBI survivors. It seemed that local TBI support groups and the email network on the
119 Opaque Self Internet served to build or confirm that belief. For instance, Don said that he liked to come to the support group meetings because he could “see if they [the participants who had TBI] are going through the same thing you are going through, not the only one going through it.” It is known that functional change of each individual with TBI is unique due to the nature of his or her injury. The informants still considered, however, that other survivors could share the similar experiences. Thus, the interaction with other people with TBI is instrumental when the individual tries to deal with one’s challenge. This topic will appear again when I discuss the category of labeled self in Chapter 7. In addition, individuals with TBI may try to regard opacity as something that everyone carries, not as the one that only TBI survivors carry. For instance, in responding to another TBI survivor who feared “the unknown” inside him, Mr. King wrote, What might be the most important thing in this issue just stuck me, and it is your anxieties and concerns and real fears. This is what makes “us” all human. You might be actually very at ease with other material or issues that others without a brain injury would be _terrified_ with! (...) A lot of these fears and misconceptions come from western fears of the subconscious mind and all of the darn personal shadows and monsters that most people have in the closet [the emphasis is Mr. King’s]. (Personal communication, July 18, 1995) He suggested in this remark that everyone had some opaque areas in oneself, which one dreads occasionally. It seems that he attempted to soothe the original sender’s fear and anxiety by normalizing that opacity. Some other people, who are relatively old, may try to see the aging factor behind the opaque self. This is another strategy to normalize opacity. For example, Ed, who was 49 years
120 Opaque Self old, attributed the weakness of his body to his age. He said, “I can’t wrestle with my body like I used to. He [his son] can beat me up right now. You know, he’s getting bigger, and I’m getting older and weaker.” Lisa, who was 54 years old, was also afraid that her functional changes might come from her age now. Like TBI, aging is an invisible process to the person. One can accept it more easily, however, because it is a normal process that everyone has to experience sooner or later. Giving a Shape to the Opaque Area Many people with TBI do not just accept the opaque self. Instead, they try to give a shape to the opaque area in the self by describing or explaining their changes in detail. When they described their experiential changes with intelligible categories, they would be able to confine their opacity in a restricted area as well as to communicate it with other people. Explanation involves not just characterizing and categorizing their experiences but articulating the underlying mechanisms of those experiences. When the experiential change is reasonably explained, they may become more secure about themselves, feeling that they have reduced the mysterious nature of the change. Describing the experiential change. An individual with TBI may find it important to characterize one’s functional change to understand oneself and communicate that change with others. It is not enough just to describe his or her experience as a single event that happened only once. One should abstract some elements common to one’s other experiences or to other survivors’ experiences. The individual may get a diagnostic term for these changes from the professionals and use it in presenting him or herself to others. “Short-term memory” was one of the terms that the informants often adopted to describe their changes. For instance, Norm said;
121 Opaque Self A lot of times, my short-term memory is, uhm..., if somebody... because a lot of my family, too, they tell me something like “You do this at this time on this day.” Well... later on that day or even a day after... they say something about it, like... [I say] “What? What do you mean? I don’t know.” “Oh, my god!” Here he used the term “short-term memory” while talking about his forgetfulness that he had been experiencing since the brain injury. Other terms frequently found in the informants’ narratives included “long-term memory,” “depression,” and “seizure disorder.” These terms are not too technical in that one could infer their meanings with little difficulty. This may be why people commonly adopt these terms for their self-descriptions. It can take a while to characterize and categorize changes after TBI. As I suggested in the first half of this chapter, many people with TBI do not know how to name their functional changes as “a problem” for which they can receive some professional intervention. Lisa, for example, had to wait for medical intervention for a long time until she finally understood a challenge as attention deficit disorder. She had experienced difficulty in “staying focused on one task” for many years. One day, her co-worker suggested that she might have attention deficit disorder. She began reading books on that topic and decided to ask her family doctor for some assistance. He recognized the symptoms of that disorder and prescribed medication. Whereas Lisa was lucky enough to have a doctor who had knowledge of it, some other informants had trouble with their doctors who were not familiar with TBI-related changes. This topic will be discussed later in more detail. People with TBI may also try to describe their experiences by using comparison or metaphor. When they categorize or name their experiential changes with common or technical terms, they may not be able to communicate the peculiarity of their experiences. They think of
122 Opaque Self some figurative expressions if they want others to understand special characteristics of their functional changes. For instance, Mr. King compared his difficulty in finding a word with the difficulty in looking for a chair in the room, when he msntioned his language change in his mail. He wrote, One way or another way I try to describe this ‘one’ problem to people is to tell them that it is like my mind searches for the correct word in some cases and it falls into a room with chairs all around it, and it just falls into the wrong chair and thus the wrong word. It is also very unexpected! (Personal communication, May 28, 1995). Also, Ms. Morgan, who was a “high functioning and verbal” TBI survivor according to her own characterization, named her memory change “memory blink” (personal communication, July 23, 1995). While she was talking, her memory “blinks out a word here and there,” and she could not think of a proper word. This happened no matter how difficult, or easy, the word was. It is certain that the comparisons like these evoke more vivid images of their experiences than the mere use of ordinary terms. Given such comparisons, other people may be able to make sense of TBI-related changes more easily. Explaining the underlying mechanism. Some people with TBI do not stop at the descriptive accounts of their functional changes. They try to explain the underlying mechanisms of the changes by further developing the comparisons or metaphors. The explanation may need rather high analytical and reasoning abilities. I found more instances of the explanation in the email data, probably because this group of people included more “high-functioning” survivors of TBI. Ms. Turner’s narrative included such an explanation. She could understand a professional lecture but could not remember the list of salad dressings at a restaurant. She tried to explain her experience as reasonable like this;
123 Opaque Self I envision it like a jigsaw puzzle. As long as the new information I am hearing has little knobs on the end that fit in with information I had stored before the accident, it is as if I can take each piece and attach it to the puzzle pieces that were there before, in effect I put each piece in place as I hear it. If the information doesn’t have little knobs on it, it just falls through and doesn’t stick at all. (Personal communication, September 19, 1994). She supposed that information from a professional lecture had such knobs and connected to her memories easily, but that was not the case with the list of salad dressings. It seems that this explanation helped her to understand herself and to lessen opacity within the self. Individuals with TBI use metaphorical explanations not only for specific functional changes but also for the self as a whole. When they believe that the whole self has changed because of their functional changes, they feel that they need to make explanations of themselves. For instance, Ms. Ford, who was a college teacher of computer software, considered that she was like a “little old-fashioned computer” whose processing speed was slow (personal communication, July 20, 1995). This comparison allowed her to communicate her functional change with the Support List members on the Internet, who were familiar with computers. She wrote that she processed in-coming information “three sentences behind the speaker” and tried “to process what had just been said.” Cognitive psychologists, as well as neuropsychologists, assume that a human being is comparable to a complex machine like a computer and that cognitive disorder is dysfunction in its mechanism (F. Evans, 1993). People with TBI, too, can assume a similar viewpoint to present themselves to others. Thus, the computer metaphor is “borrowed” by people from a common cultural understanding of human beings. The concept of brain is often introduced in the explanation of a functional change after TBI. With the knowledge that they have injuries on their brains, people with TBI are likely to
124 Opaque Self believe that their experiential changes reflect dysfunction of their brains. Richard, for instance, said that he sometimes forgot where he was, but this was because “the connection in the brain is not good.” In this statement, the concept of brain was used as a medium in which some mechanical dysfunction occurred. Other informants sometimes treated the brain as a concept interchangeable with the self. Norm stated, for example, “It [my life] is screwed up because... it takes... takes me, takes my brain longer to process stuff. I’m not as quick as before.” He simply replaced the word “me” with “my brain” in this remark. Likewise, Ms. Thomas used both “I” and “my brain” as the subject word for the same dysfunctional condition. She explained her experience with “sensory overload,” like this; I have lost much of my ability to filter out the ‘junk.’ That includes hearing, of course, but also vision (lights, reflections, movement, etc.), touch (temperature, breeze/wind, etc.) even smell. Since my brain has a much more difficult time filtering it all out, it tries to process it all at the same time and with the same intensity. My brain’s response is similar to what my poor little computer does when I try to use more RAM memory that I have... it smokes [the emphasis is added]. (Personal communication, April 2, 1995) Here, it was “the brain” as well as “I” that had lost the ability to filter unnecessary stimuli. The notion of brain, thus, appears in TBI survivors’ explanations sometimes as the medium of dysfunctional mechanisms and sometimes as the “owner” of the mechanisms. Specifying the conditions of functional changes. People with TBI may also turn their eyes to the external or internal conditions under which their functional changes affect their lives. It is possible to elaborate upon the above type of mechanical explanation further by making use of the theories of neuropsychology or cognitive psychology. However, that type of explanation may create a more pathological image about the individual while locating a “problem” inside
125 Opaque Self him or her. Even the entire person may be looked upon as a “problem” when the brain is equated to the person’s self. Also, as far as the mechanical explanation just refers to a complex biological process, like the one in the brain, the individual could not improve any functional change for him or herself. The individual would always need the help of professionals who know how to treat the biological process. Actually, many functional changes may be associated with other manageable conditions. As I illustrated above, some functional changes after TBI fluctuate, but the fluctuation can be under the influence of some internal and external conditions. Many informants already knew what conditions could affect their functioning. For example, Lisa believed that functional change behind her continuous mistakes at her job could show itself in relation to some external conditions. She said, “The more pressure I’m under, and the more disorganized my surroundings are, the worse I get.” Mr. King also wrote that his speech errors tended to be worse when he did not have a good sleep the night before (personal communication, May 28, 1995). He was aware of the relationship between his functional change and his bodily condition of the day. Other informants mentioned some conditions under which they could function better. Ms. Clark, for instance, stated, “I find I can be more organized when I have lots of time, am at peace, and not stressed” (personal communication, July 14, 1995). This is a statement that reverses the above remark of Lisa’s. It seems that the individual with TBI tries to understand his or her functional change while associating the change with something more manageable. Some informants were sensitive to certain internal or external conditions that might give warning of deterioration of their functioning. Even though those conditions themselves did not cause a functional change to appear, they were helpful to the informants in getting aware of up-
126 Opaque Self coming, difficult situations in advance. Fred, for instance, had knowledge about how he was likely to behave just before he lost his temper. He said, I always know, I’ll, I, I even realize that I’m starting to get mad, ‘cause I start talking a little faster, start talking little higher, and a little more... making my point [Making a fist and giving a shake to it] to get to it and everything. I mean, and then, after that I puff. There goes. I lost it and I’m mad. He did not believe that he could control his anger once it started. Hence, he made it a rule to go away from the place when he noticed that warning sign. Also, Ms. Thomas wrote that there were some signs that her “cognitive and environmental overload” would arise. She was on the alert for these signs, such as a slight feeling of being disoriented, to stop the overload before it became “in full swing” (personal communication, October 18, 1995). Individuals with TBI may use any perceptual cues to curb the activities of opacity within themselves. Controlling Opacity People with TBI try to control their functional changes, not just to describe or explain those changes. Describing and explaining the functional changes are the preliminary steps of these missions of controlling opacity. As I mentioned above, one’s functional change becomes a challenge while one is interacting with environment. One’s efforts to control the functional changes are, therefore, directed to both oneself and the environment. Thus, the individual should view him or herself and the environment objectively and figure out what to do to overcome the challenge. Some people with TBI recover a privileged status to control themselves to a certain extent. However, it is difficult for some other people to view themselves objectively, and so they need to develop a support system to get over their opacity.
127 Opaque Self Management of the environment. People with TBI can manage the environmental conditions by modifying the quality and quantity of in-coming information. I described earlier that their environments often looked disorganized, sometimes even chaotic, after TBI. The individual may attempt to modify one’s surroundings so that it can facilitate one’s action. Some of the informants were careful in organizing their environments. Ms. Ford, who was a college teacher, used visual cues to put her school stuff in order, for example. She wrote, I have 15 weeks of class sessions, so I have labeled my folders Week 1 through Week 15. In each of those weeks, I put color folders to indicate different events for the class, ie. red = exams, green = class notes, yellow = class exercises. That way I can open the draw, see the colors and prepare myself for the week. The colors help. As much visual things I can use, the better it is to organize myself. (Personal communication, September 30, 1994). Lisa was another informant who tried to prepare some kind of organization in her surrounding environment, which she called a “structure.” She pointed out that the structure could reduce the number of judgments that would be necessary in carrying out a task. Also, organizing information is also helpful in remembering it when the individual sustains a memory change. One example was observed when I attended a TBI support group meeting, in which the participants were making a plan for a Christmas party. Fred suggested that the costs of admission and a Christmas present be the same so that he, as well as other participants, would not become confused. Thus, he tried to take a load off the participants’ memory by organizing information that they had to handle. Some other people try to limit the amount of stimuli coming from their surroundings so that the stimuli might not interfere with their activities. They should know what can disturb them first, and then they can use some devices to eliminate the disturbing stimuli. For instance, Ms.
128 Opaque Self Thomas wrote that, when she had to go to a crowded place like a mall, she always carried sunglasses and ear plugs to “dampen down the visual and auditory stimuli” (personal communication, October 18, 1994). Additionally, she walked closest to the wall in the mall so that she could reduce the amount of information from one side. It would be possible, of course, that people with TBI completely eliminate disturbing stimuli by avoiding a certain situation. Sam, for instance, tried not to go to a noisy place in which loud sound and music might make him irritable and tired. He said, “I won’t go if the place is too noisy. (...) I will be away from them [noisy places], just trying to cope with [my functional change] the best I can.” Thus, many people with TBI choose an environment for their activities where they can be as functional as possible. Eliminating disturbing stimuli could create a dilemma for people with TBI, however. If they avoid disturbing situations too frequently, they may find their activities being limited and feel themselves being isolated from society. Mr. Carr wrote, for instance, that he could interact with people no more than a few hours because the interaction exhausted him easily. He went on to state, “I don’t isolate myself because I am depressed, but because of the bad experience, which probably falls into the category of ‘cognitive overload’” (personal communication, September 4, 1994). Similar remarks were found in the narratives of other informants, such as Ms. Turner and Ms. Ford. They wanted to interact their friends and relatives more, whereas they also wanted to keep away from situations in which their functional changes might apparent. Avoiding a disturbing situation is certainly a coping behavior for the individual with TBI. However, it may become dysfunctional as it goes against one’s need and desire to be social. Management of the self. Besides controlling their environments, people with TBI try to control themselves while viewing their behaviors from objective points of view. One ordinarily does not objectify oneself when one engages in activities of daily living, such as wearing clothes
129 Opaque Self and using a knife and a fork to eat. However, people with TBI may need to be conscious of their plans, movements, and consequences of such apparently simple activities. Ms. Thomas pointed out this by writing, “Once injured, survivors stop working on ‘automatic’ and must do everything ‘manually’” (personal communication, October 28, 1994). Thus, people with TBI have to be careful about many activities that they paid little attention to before the injury. Ed, for instance, made efforts to form a habit of thinking twice when he started something. He said, “I’ve got to stop and think about... ‘Isn’t it gonna hurt me if I do this? Am I supposed to do this?’” This remark suggested that he tried to evaluate his judgment of action from an objective viewpoint. Thus, people with TBI often need to be much more self-conscious than before if they want to avoid mistakes and errors. When taking such objective viewpoints to see themselves, individuals with TBI may be able to make up for some lacks or to suppress some excesses. There are some strategies to deal with opacity as a negative force. For instance, some of the informants like Norm carried small notebooks to compensate for their memory changes. I saw them take notes of what they wanted to remember. Karen also told me that she had a note at her work place, a pizza restaurant, about how to make dough for pizza. If she forgot the procedure, she could refer to the note anytime although, she said, she rarely needed it now. Moreover, some people with TBI know ways to control opacity as a positive force as well. Sam, for example, said that he managed his emotional instability with relaxation techniques. When he felt himself becoming upset, he did “recall a pleasant situation, substitute for the present one... a passage that makes me pleasant,” or to “bring good memories.” He thus attempted to stand outside the distressing emotion and to replace it with a good one.
130 Opaque Self Some people with TBI attempt to make routines for their everyday activities to avoid blunders. According to Ms. Thomas, it “takes a lot of effort and can be quite draining” to attend to each step of her activity all the time (personal communication, October 28, 1994). Energy can be saved if one turns the activity process into a routine so that one may not have to watch every step of the process. Mr. Chase was one of the informants who used that strategy of routinization. He sustained a short-term memory change after his brain injury caused by encephalitis and forgot something important from time to time. He wrote, “I ALWAYS check my pockets for ‘the regulars’ before I finally shut the door” [the emphasis is his] (personal communication, July 14, 1995). Because of this routine check, he could concentrate on what to do next once he went out of the door, without worrying about his personal effects. There are also some people with TBI who even change their views of themselves after the continuous attempts to control themselves. Linge (1990), for example, stated, “I have become a person of habit and routine in my daily life” (p. 118). Development of the support system. However, it is not easy for many individuals with TBI to control opacity by objectifying themselves and their environments. Some informants, in fact, reported failures of their attempts to control their functional changes. For example, Fred said, “Everybody says, ‘Oh, you can’t remember things? Write it down.’ OK. I write it down. Now, it’s in my pocket. I forget to look. I forget that I wrote it down. So, now, what can I do?” People with TBI try to objectify and control themselves, but this takes much cognitive capacity that may be drastically changed after TBI. This is a serious dilemma that they face. To avoid this dilemma, they may seek assistance from somebody else for their functional changes in addition to their attempts of compensating for these changes.
131 Opaque Self Most individuals with TBI have support systems that help them to live with the opaque self. Some informants relied on their friends and family members to make up for their specific functional changes. For instance, Karen sustained a change in her short-term memory, and so it was always difficult for her to remember her appointments. It seemed, however, that she did not care much about this memory change since her mother and other family members usually played the role of her planner. Karen’s mother stayed with her at home most of the time and reminded her of the day’s schedule. That explained why Karen seldom described her memory change with negative words like “frustrating” or “upsetting.” Also, Mr. Chase asked his co-worker to stimulate him to keep working as he often lost his motivation to continue his job. He wrote, “I got someone else to pester me, push me (metaphorically) until the job’s done. He’s now taken to calling himself ‘Mr. Motivator’” (personal communication, July 7, 1995). Thus, other people can fill the gap in the self of an individual with TBI and assist him or her to accomplish a certain task. Furthermore, people with TBI may ask others to evaluate their judgments or to supervise their behaviors. Ben, for instance, was not certain of his capacity to control his finances. He said, “I need help finding out if I am spending money quickly... ‘cause I don’t have a lot of money. I seem to spend it rapidly.” He wished to overcome the opaque area in himself by using other persons as watchmen. He believed that other people had more accurate knowledge about some aspects of his behavior. For another example, Ed said that he sometimes relied on others, particularly on his family, to control himself. He stated, I am accused to talking too much, and my wife just puts her finger to her lips now and gives me, “Shhh.” That lets me know, without her being mean, that I’m starting to talk too much. You know. Little things. And then, I can tell by... body language and looks
132 Opaque Self from other people that I might say something too much. I don’t know sometimes... that I’m saying anything mean, but sometimes it comes out. This reliance seemed to be based on his sense of trust in his family. When he talked about coming to the interview with me, he said, “If they [his family] encourage it, I’m doing the right thing.” His statements like this suggested that Ed believed in his family’s role of compensating for the opaque area within himself. Consequences of Seeking a Less Opaque Self As described above, people with TBI try to restore the understanding of their capabilities in the environments by explaining or controlling the opaque areas in the self. The process of seeking a less opaque self may influence the person’s view of him or herself. First, the process seems to allow the person to alleviate the anxiety about carrying opacity. Even though one still has a brain injury inside the body, one will come to see its consequence as an object, rather than as something invisible that dominates him or her. Second, the process may make the person feel uncomfortable about oneself again if it involves promoting dependence on other people too much. Seeking a less opaque self may create another negative self-image in the person’s narrative. Thus, it is possible that the efforts to reduce opacity within the self can produce a positive consequence and/or a negative consequence. Effects of the explanation. People with TBI may consider that explaining their functional changes is a necessary coping strategy. As Ms. Turner wrote, “one of the ways I cope with things that are ‘strange’ is to fully understand the mechanism” (personal communication, December 2, 1994). The individual may need “to fully understand the mechanism” not only because the understanding can be used to control one’s functional change but also because it allows the individual to feel more comfortable with oneself. People generally have a belief that
133 Opaque Self their consciousness or will is the master of their bodies and actions. From this belief, it follows that having another entity or an opaque area that controls one’s action is a “strange,” or even dreadful condition, which may be called “craziness.” Explaining its mechanism and making it less opaque will serve to remove that condition. For instance, Ms. Clark was relieved to learn some potential explanations of her “strange” experiences like fatigue from florescent light. She wrote, I’m finally started to feel like I’m not crazy, or imagining things, or out here on my own. It helps so much to know that what I’ve been experiencing is “normal” and explainable and to feel like may be there are people out there who can understand... (Personal communication, January 22, 1995) Her functional change might have been still intractable to her, but just explaining it had a positive effect on her evaluation of herself. Thus, an explanation of the opaque self can give the person a sense of “normality” as well as the possibility to be understood by other people. There seem to be some connections among the notions of being explainable, being “normal,” and being understood by others. People with TBI may be able to keep good self-images when they attribute their functional changes to their brain injuries. As long as they believe their brain injuries to exist outside the core of themselves, they can separate themselves from their “strange” behaviors that may be caused by the brain pathology. Karen, for instance, gave an account of her behavior that had resulted in trouble around her. When she told that she forgot something important in front of her boyfriend, she said, “He put up with me. That’s not [because] I’m bad to him but because of my head injury.” Here she hinted that her behavior that could annoy other people was not her fault. By explaining her forgetfulness with her brain injury, she was relieved of blame for
134 Opaque Self annoying others. As Shlenker & Weigold (1992) suggested, the person’s account of his or her mistake or failure will be likely accepted when its presumed cause is something external and uncontrollable to the person. The brain injury can function as such a cause. When the individual does not have to assume the responsibility for one’s functional change, outside help can be accepted more easily. Ms. Turner, for example, had resisted taking anti-depressants at first, believing that her depression had been within the realm of her responsibility. Later she was convinced that her depression resulted from a change in chemical balance of the brain, and she accepted the medication. She wrote, I fought against taking anti-depressants for five months following my tbi because I used to being a “good soldier” and working through things. Finally my neurologist told me that I could do talk therapy for the rest of my life, and it wouldn’t change the fact that my brain chemistry was screwed up and that if I had pneumonia, I’d let him give me penicillin, and that anti-depressants were the same thing. I will be forever grateful to him for talking me into it because it has made a big difference in the organic depression. (Personal communication, July 7, 1995) This remark clearly shows that the way that the individual deals with one’s functional change depends on one’s definition of the change. When the individual defines the change as a simple biological process, he or she may be able to treat it as an object while detaching it from the essential part of the self. Negative aspects of being helped. Getting assistance to remove opacity may have an ambiguous meaning to the individual with TBI. It is certain that the self may become less opaque and more functional in relation to the environment when the individual is assisted by other people. However, the person may feel that his or her autonomy and independence are yielded to
135 Opaque Self them because he or she does not have a privileged status any more to view and understand the self. Some informants felt as if they had lost their worth and dignity when they were helped by others. Mr. Chase, for instance, wrote that he had to “swallow the pride” before accepting the help offered to him. The acceptance meant to him “horrible submission” at first, even though he became to consider later that it was necessary to a certain degree after sustaining a brain injury (personal communication, April 1, 1995). This resistance against accepting the assistance may be conspicuous among people especially in a country like the US, where autonomy and independence are highly valued. When an individual with TBI yields other people the authority to supervise his or her behavior, it may be difficult for the individual to assert him or herself against criticisms from them. The individual is not totally confident in one’s self-understanding because one admits that others have more accurate knowledge about behavior. For instance, Ben was once alleged by an independent living center stuff to have sexually harassed a woman at the center. He could not deny the allegation although he had no remembrance of such misconduct. When I asked him if he had argued back, he said, “I just listened to him [one of the center staff] and left. That’s all. (...) Arguing with him is like arguing with a wall.” It seems that he believed that the accurate knowledge was in other people’s hands, not in his hands. Just as patients have to obey the medical doctor who apparently has more knowledge about their illnesses, some individuals with TBI feel that they have to obey other people. Another potentially negative aspect of receiving the assistance is that some assistance changes the person’s appearance. In other words, one may be forced to present the self in a way that one does not like. Karen, for instance, came to her work place with a job coach to make up
136 Opaque Self for her functional changes in memory, attention, and hearing. She had wished to make friends with female co-workers of her age while working there, but she could not. She said, I’m not able to do [make friends] because, when you go into a new work place, you go in there as a head-injured person, and you go in there with a job coach. That makes them think differently of you because I have a job-coach and I am a head-injured. They might not really treat me the same as another person, ordinary person because I go into the work place with a job coach. They are pretty nice to me though. Thus, she believed that the presence of her job coach made her look different from her coworkers and more subject to the label of “head-injured.” I also observed another example at a TBI support group meeting. A young participant, who had a serious short-term memory change, said that she hated to carry a tape recorder because it would make her look “stupid.” Luborsky (1994) pointed out the ambiguity of rehabilitation technology. Although assistive devices may be useful for the individual to become more functional, they may intensify his or her apparent difference. Some people with disabilities, therefore, avoid the use of assistive devices (Kaufert & Locker, 1990). This may be true of the assistance offered to people with TBI. Concluding Remarks People with TBI are likely to experience the opaque self as one category of loss of self. They used to have some knowledge about what they could do in the world while associating their ability with their environment. By sustaining TBI, however, they have lost this self-knowledge and experienced an opaque area in the process of realizing their actions. According to Charmaz (1983; 1991), one of the major sources of loss of self that people with chronic illness may experience is loss of control and agency. They feel that there is some dissociation between the self and their worlds, which does not allow them to make a difference in the world. It seems that
137 Opaque Self this characterization is applicable to individuals with TBI. In their narratives, however, their loss of self is also associated with something within the self as well. Thus, they feel that they are dissociated from themselves, namely, their bodies, their motivations, or their perceptions. All their efforts to overcome the opaque self are directed toward the goal of reuniting the broken connection within the self, not just between the self and the world. The strategies that the informants introduced to us will be good resources for other people with TBI and care-providers. When one uses a strategy, however, it may be necessary to consider what the strategy would bring, including its positive and negative consequences.
138 Devalued Self
Chapter 6
THE DEVALUED SELF
In the previous chapter, I clarified the category of opaque self that people with TBI are likely to construct in relation to their functional changes. This chapter will discuss how they evaluate aspects of the self, which include the opaque self, in the context of their entire life. In this evaluation process, they seem to experience another major category of loss of self, which I name the “devalued self.” It is their self-history that supplies a context for that evaluation. I described in Chapter 4 that people with TBI tended to carry two types of self-history that were contradictory to each other. One suggested that the individual’s life was continuous, whereas the other suggested that his or her life was totally changed. An experience is a textile of meanings that the individual constructs in self-narrative. As I will discuss in the first half of this chapter, people with TBI interpret the experience of their TBI-related changes as a negative meaning against the background of their self-histories. In the second half, I will illustrate their attempts to overcome that negative meaning by re-interpreting their lives as a whole. The Self in Comparison Referring to the present self, people with TBI sometimes say, “This is not like me.” This statement suggests that they have clear notions of what is like them, and that they reject the present self as what is not like them. Their present selves are often compared with their pre-
139 Devalued Self injury selves and evaluated negatively in this comparison. Generally, one compares oneself with other people to increase self-knowledge and to enhance self-esteem (Banaji & Prentice, 1994). Individuals with TBI, however, use not so much others as their pre-injury selves for that comparison. It is also known that persons with acquired physical disabilities are likely to devaluate themselves while comparing their present selves with the pre-injury selves (Dembo, Leviton, & Wright, 1956/1975; Wright, 1983). They interpret loss of one part of their physical function as loss of their value as human beings. This is similar to what can be found in the experiences of people with TBI. However, the self that they pay attention to is not just its physical functioning. I will present here the category of devalued self, clarifying its various aspects found in the narratives of people with TBI. Various Objects of Comparison People with TBI often compare their present self-images and life situations with the preinjury ones. The informants’ narratives include many instances of such comparison. Norm, for example, said, “My life was a hell a lot different than I do now.” Fred also stated, “I’m nothing like I was. (...) I don’t know why I have to do this, why it’s so hard for me this way and... before, it had been easy, but now it’s not as easy.” They clearly contrasted their present with the past. To understand this type of statement that people with TBI make, one should know what “life” or “self” means in each statement. The comparison involves many aspects of their lives, including physical and psychological functioning, occupations, interpersonal relations, and future prospects. People with TBI feel that they have lost various things after the injury. Limited physical and psychological functions.
As I already illustrated in the previous
chapter, people with TBI tend to believe that their physical and psychological changes provide a basis for challenges that they face. Some of the informants, including Jack and Ed, lost part of
140 Devalued Self their physical functions. For a while after the accident, Jack had not been able to take care of himself, having difficulty putting on his socks and shoes, for instance. He could live independently at the time of the interview, but such fine movement of the hand as writing letters or turning a page of the book, was still a trouble to him. He commented on his uncoordinated hands by saying, “I’m afraid people see me childish.” His present bodily function changed after the accident was inconsistent with his self-definition as an adult. TBI can also alter the person’s sense and perception, including vision, hearing, touch, smell, and taste. As I mentioned earlier, Ed reported that his senses of taste and smell were lost because of the accident. He certainly contrasted his present self with pre-injury self when he missed the loss. People may refer to their opaque, experiential changes in making comparison between the present and the past. The previous chapter described that some informants had no idea how to characterize their experiences, and so their descriptions could be vague. However, they could compare the past with their present situations, considering whether they found opacity in their experiences or not. Richard, for example, did not feel that he perceived and recognized the world as clearly as before. It was becoming better now, but he still felt as if he had been half-asleep. He said, “I was less foggy. Like I was less... I more wake now than I was then [soon after the accident], but still not awake all the way.” Don also said that his “mind” had become “more cloudy” because of the accident. Thus, many people with TBI sense that something has changed in their experience since their TBI, but they cannot describe it intelligibly. They confront the present selves with some opacity, in comparison with their past selves that were less opaque. Whereas Richard and Don compared between their direct experiences before and after the accidents, other informants contrasted their internal characteristics. For instance, Mr. Randall wrote,
141 Devalued Self I am highly functional although I have lost considerable feeling and some coordination of the left side. I used to be far ahead of others in the areas of comprehension and cognitive abilities. As an example, before the surgery, I didn’t keep a written calendar. I kept it all in my head with no problem, now I struggle from one day to the next. (Personal communication, April 1, 1995) Although he was a stroke survivor, this kind of remark that refers to changes in internal characteristics is common in the narratives of people with TBI as well. They often remark that they lost their abilities to concentrate, control their emotion, understand language, find appropriate words, sequence the activities, and so on. Many of them feel that they are going through the major life crises because of these changes in their abilities. Limited job capacities and opportunities. People with TBI frequently talk about their occupations as a major area of the change after TBI. Many informants had to modify the content or amount of their work even if they successfully returned to their previous jobs. Ed, for instance, could resume his job as a mechanic at a gas and electric company. But his work was restricted because his balance problem did not allow him to climb high for the job. When he encountered a situation that he could not handle for himself, he did not hesitate asking some assistance from his co-workers. He would say to them, “Hey, I need a hand. I... can’t lift that much, I can’t walk that far, uhm... I can’t see that far.” He was aware that his work capacity was changed even though he believed that he could still contribute to the company. Also, Ms. Ford had to limit the amount of her teaching job to keep the quality of her performance. She wrote, “I cut down my work (full time) by working three days a week, putting 5 days into 3” (personal communication, June 21, 1995). She needed more preparation and more rest because of her cognitive change.
142 Devalued Self More informants were obliged to leave their jobs and to live on Social Security benefits. Don, for example, had been a maintenance worker for public buildings for thirteen years before his accident. He believed that the accident resulted in the problem of concentration and the emotional instability, which made it difficult for him to return to work. If he kept doing the same thing, he would become more depressed or come to feel like wandering. He said, “Now, I don’t wanna stay one place a lot and the stuff. So, that’s why I couldn’t get back to work.” Also, Norm used be a sheet-rocker, but he was told not to engage in such a strenuous job now because of seizure disorder. After several years of searching for a job, he was still unemployed because of that functional change. The difficulty in finding a job may not be a result of their functional changes but a result of limited opportunities that society provides for people with TBI. Fred, for example, had been unemployed since his injury. He stated, “Just give me a chance. I’ll prove that I can do it. But I can’t [get a chance]. They keep pushing me down.” He wanted to improve the current service system so that jobs could be more accessible to people with disabilities. He planned to start a human service agency to supply information for the people and to create a job for himself. Also, Sam had been looking for a photography-related job those years, but in vain so far. He believed that brain injuries deprived TBI survivors of their opportunities to get a job because many employers had prejudices against the brain injury. The next chapter will discuss this issue in further detail. A direct consequence of unemployment or limited working hours is the decrease in the person’s income. Many informants had a concern about their financial situations, which frequently restricted their activities. For instance, Jack, who lived mainly on Social Security benefits, chose his activity based on the amount of money that it would cost. He said,
143 Devalued Self They [a group of people with mental illnesses] invited me to come to the track with them one day... I had no money. But it’s a good thing because I said, “No,” because I didn’t have any money. And I was afraid it would cost something to get in. And I found out it cost twenty bucks to get in there... Twenty dollar’s admission, so I am glad I said “No.” Also, Norm liked to play sports such as tennis or basketball. When I asked him why he did not play sports recently, the reason he answered first was that everything cost more money than he could afford. He stated, “In order to do that, to be able to play basketball or tennis in there, I have to pay a big bucks. Like I stop it. (...) I think that the world has switched so much since my accident.” Both Norm and Jack felt that their finances narrowed the range of activities that they could join. Limited interpersonal relations. Another aspect of life that individuals with TBI often compare with the pre-injury time is related to their interpersonal relations. Many individuals experience changes in their relationship with other people after their injuries. Some of the informants said that their friends had finally left them. For instance, when I asked if there was a negative effect of her accident, Karen promptly said, “Loss of people who used to be friend. (...) Not lost contact alone, just we lost being friends with each other.” She was still looking for friends of same age and sex, but she had not found anyone yet. Although she had opportunities to meet other TBI survivors, most of them were male. She felt that her mother was like a friend instead. Another informant who had sustained TBI eleven years before, Mr. Crawford, wrote to the Internet TBI List to address this issue. He stated, “My life used to be easy. I had it all. Now I don’t have SQUAT! I’m ALONE” [the emphasis is his] (personal communication, June 7, 1995). The sense of isolation and the feeling of loneliness may represent a major difference that individuals with TBI find when they compare their present with pre-injury lives.
144 Devalued Self Even if the individual has the same people around him or her, the relationship with them may become different. The change of marital or family relations seems to be common among the informants. For example, Ms. Ford had a feeling of estrangement from her husband after her TBI. She wrote, “He avoided me like the plague. Did not go to any counseling or rehab sessions with me. Could not understand why I was the way I was” (personal communication, February 27, 1995). Lisa also remembered having serious trouble with her husband when she resumed her family life. She could not drive a car for a while due to the intense fear of another accident, but her husband would not understand her. She stated, “I used to get often... angry with him. He would just... not want to hear about it. You know, ‘Be quiet.’ I just kept it to myself and felt inadequate.” It seems that she blamed herself for her change all the more because of this difficult relationship with her husband. Many people with TBI consider that building a new relationship is another challenge to them. As I mentioned in the previous chapter, some informants were afraid to go out of their houses since they did not want to blunder in front of others. They actually wished to make new friends, but they shrank at the last moment. Also, other informants felt that they were not confident in their abilities to develop a new intimate relationship. Ben, for instance, told me that he was not sure if he was ready to have a girl friend although he wanted to have one. He said, “I think I would like to have a job, have a lot of money, before I start a lasting relationship.” His limited financial ability apparently influenced his interpersonal relationship. Moreover, Mr. Crawford felt that he could not control himself in the process of developing an intimate relationship. He continued his mail that I quoted above, like this;
145 Devalued Self Whenever I think there’ll be a special woman in my life I destroy ANY prospect of a relationship by being too impulsive and falling head-over-heel in love with her much TOO QUICKLY. I HATE IT [the emphasis is his]. (Personal communication, June 7, 1995). He believed that he tended to rush and finally ruin the relationship although he wished to build it. Changed appearance of time. People with TBI are likely to feel that the appearance of time has changed as well. Like other changes in their lives, the changed appearance of time becomes manifest when they compare their present selves with the pre-injury selves. This comparison does not only involve contrasting the actual life conditions that they had before the injury with the ones that they have now. But they also compare between the potential life conditions that they would have attained without TBI and the ones that they are likely to have with TBI. In other words, both the pre-injury self and the present self contain the entire lives extended over time. All the concepts that I just described above, namely, limited work opportunity, limited budget, and limited social relationship, seem to contribute to this experience of changed appearance of time. When people with TBI view their present time, some of them sense that it has become flat and monotonous. This sense was common especially among the informants who were currently unemployed. For instance, Norm mentioned that his present life was “free” and “boring.” He used to be active in the evening as well as during the daytime. But now he found nothing to do after coming back from the Learning Center. He had neither a budget with which to play nor many friends with whom to play. Although the informants who were unemployed apparently had plenty of “free time,” they felt that the word “free” did not mean anything valuable. Ben, for example, felt as if time had been just to be wasted. When I asked him how he
146 Devalued Self liked to come to the coffee shop that he frequented, he answered, “I come here just to waste my time.” As Sam suggested, “free” time might become valuable only if one has “busy” time. Sam went on to say that he, as well as his friends with TBI, could not take a “vacation” because he did not have a job from which he could take a “vacation.” In his vocabulary, the word “vacation,” like “free” time, was meaningless. The sense of future time is also altered among people with TBI. In the previous chapter, I discussed the experience of opaque future, which they have when they cannot make future plans. This experience seems to represent an important aspect of the altered sense of future. Many informants felt that the pre-injury selves and the present selves had dramatically different future. For instance, Ms. Ford wrote, “It has been an extremely emotional roller coaster for me in realizing that the direction that I wanted to pursue has been snatched away” (personal communication, September 30, 1994). What she was viewing in the future of the present self was a loss of the future plans that her pre-injury self used to have. Other informants also felt that their future time was not theirs but controlled by other people. Before the meeting with his attorney and an insurance company agent, Mr. King stated, “I feel like my life and fate is in other people’s hands” (personal communication, July 16, 1995). Many aspects of time that extends from past to future are thus changed in the experiences of people with TBI. Consequences of the Compared Self People with TBI emotionally respond to selves that they find different from the pre-injury ones. The difference is mostly interpreted as a negative change. They feel angry, frustrated, sad, or ashamed about themselves when they believe that they cannot be the same as the previous self. They may consider one functional change to be a sign that shows they have lost their value as a whole. This negative evaluation continues even after several years of living with TBI. The
147 Devalued Self individual with TBI may wish to express emotions about him or herself and wish others to understand them. However, he or she is likely to hold in these emotions for fear that others would just disregard them. The theme of emotional reaction to the self-change was more conspicuous in the email data than in the interview data. This fact may reflect the informants’ tendency to hesitate expressing their emotions in a face-to-face situation. As Bym (1995) mentioned, the computer-mediated communication provides people with an opportunity to release their feelings more freely. Emotional reactions to the changed self. It is easy to find negative emotions toward their changed self-images in TBI survivors’ self-narratives. The informants reported that their changes in physical and psychological functions could arouse the feelings of frustration and anger toward themselves. Sam, who sustained a change in his short-term memory, said that he used to “get mad” about himself every time he forgot something. These days he was not so angry as he used to be, but still frustrated by apparently small mistakes. I sometimes heard him swear at himself when he forgot to bring a pen or a notebook, for instance. He explained to me, “When things do not go as I wish, and I cannot have a sense of accomplishment, the level of frustration increases.” Ms. Clark, who was struggling with the organization of her surrounding, also stated, “I engage in a never ending battle with myself” (personal communication, July 14, 1995). In this remark, the self was represented like an enemy that she had to defeat. Thus, people with TBI may experience aggressive feelings toward the changed self at present. Grief is another feeling that people with TBI are likely to have when they compare the present and pre-injury selves. But the target for this feeling is different from the one for anger and frustration. For instance, Ms. Thomas wrote,
148 Devalued Self I am grateful to be alive (most days) and appreciative that I have what I have. HOWEVER, that does not stop me from being frustrated by the challenges and barriers that stand in my way... it does not prevent me from wistfully looking back on those days when things were such a snap, it can’t protect me from the grief I feel when I think of the potential of what my life would have been and all the work lost at getting to where I was at career-wise [the emphasis is hers]. (Personal communication, April 5, 1995) Among a few kinds of emotions that she expressed here, the feeling of grief was directed toward what she believed to have lost. The target of the grief is, thus, the pre-injury self, whereas the target of anger and frustration is the present self. This feeling of grief is similar to mourning for a dead person. As described earlier, some informants, such as Fred, Mr. Crawford, and Ms. Ford, mentioned that their pre-injury selves had died at the time of the accidents. The changed part of the self may make people feel that they are useless or unworthy as a whole. Some informants interpreted certain functional changes as signs of their inability that would last forever in every aspect of their lives. As Ms. Kline mentioned, they might believe that they “would never be able to do anything right again” (personal communication, October 18, 1994). Some of the informants also remarked that they had lost the self-confidence to make a difference in their environments and felt no motivation for any activities. For example, while remembering her life during several years after her injury, Lisa said, “I had a tremendous decline in my self-esteem. I just couldn’t do anything.” Richard also stated that he hid himself at home as if he had been doing something. Considering his age, he was ashamed of his unemployment status and did not want to show himself to many people. If the individual actually does nothing outside, however, one will lose an opportunity to become aware of his or her strengths and
149 Devalued Self residual capacities. The individual may focus on weaknesses, lose the self-confidence more, and shut oneself up at home. It seems to be a case of a vicious cycle. After all these negative feelings about oneself, the individual may fall into depression or despair and even become suicidal. That was a stage that Dann (1984) went through during her 15 years’ experience of TBI. She wrote, “Another stage that I have dwelled in is that of depression. (...) I have frequented the depth of despair, in some cases not knowing if I would survive” (p. 11). Similar emotions were also found in email to the TBI Support List. For example, Ms. Ford wrote a poem to express her “deepest despair,” which she felt when she perceived that other people did not understand her self-changes at all. The poem said, “I feel like I fell into the darkest of a dark holes that could be found upon this earth” (personal communication, June 29, 1995). She also wrote that she had been suicidal for a while. When the individual believes that the present self is not the “real” one, committing suicide may mean just destroying the “unreal” self. This would never bring back the “real” self to the individual, but he or she may not stand the notion that the self is not “real.” Restrained emotional expressions. The individual with TBI may not express these negative feelings toward the self in daily interaction with other people. He or she supposes that other people are unlikely to accept his or her emotional expression. For example, Ms. Thomas stated that even medical professionals did not allow the individual with TBI to reveal his or her feelings. They tended to “treat” the negative feelings too quickly by providing common words of comfort, such as “It could be worse,” or “It will be better.” Ms. Thomas went on to write, “Let me have and express my anger and my frustration and then help me find ways to deal with it” (personal communication, April 5, 1995). It seems that the individual with TBI wants other people
150 Devalued Self to share or acknowledge one’s feeling about oneself even if it is negative. However, other people tend to rush and remove the “negative” emotions from the individual as soon as possible. People with TBI may control themselves not to have or not to reveal the “negative” feelings for different reasons. Some informants believed that these feelings could interfere with their activities. Ed, for instance, said that he tried to avoid such negative feelings toward himself now, while he used to feel depressed and “sit down on the pity pot” from time to time. “It doesn’t do any good if I’m whining about it,” he said. Other informants went further to state that the expressions of their negative feelings might make their interactions with other people more awkward. For instance, Jack told me, “No one wants to hear me piss and moan. You know? They don’t hear me talk and whine and bellyache.” Thus, people with TBI may feel that society implicitly prohibits their expressions of negative emotions. They seem to internalize this social rule when they try to control their emotions that are concerned with the experiences of the devalued self. Restoring the Value of the Self People with TBI have developed some kinds of strategies and rhetoric to restore the sense of value in themselves and to overcome the sense of loss of self. Nadell (1991) suggested that reconnecting the past self and the present self could alleviate the negative feelings about the self, but possible strategies and rhetoric are not limited to the reconnection of the two selves. Thus, some individuals with TBI may continue to have the hope of future recovery while keeping the pre-injury selves as a final goal. Also, some individuals attempt to attach positive meanings to the present selves by reinterpreting their entire lives. The first strategy seems to reconnect the past self to the present self, but the second one is more like an effort to dissociate the present self from the pre-injury self.
151 Devalued Self The Hope of Recovery to the Pre-Injury Self People with TBI can manage to put up with negative characteristics of the present self as long as they believe in their eventual recovery to the pre-injury self. The hope that they will be back to “normal” (Prigatano, 1995) in the future supports their present lives, no matter how negative their lives may look. It is known that recovery from TBI a few years or more after the injury is much slower than the first year but can continue (Long et al., 1984; Ponsford, 1995). Current medical science cannot exactly predict how much the person with TBI will recover and how long it will take. This uncertainty of the future may give the sense of anxiety to people with TBI. However, it is also a basis of the hope because no one can tell with 100% certainty that the person would not recover any more. While people with TBI believe that they are recovering little by little, their pre-injury selves are still available as a goal of their daily lives. Effects of the hope of recovery. As I mentioned in Chapter 4, many people with TBI understand that they cannot recover immediately. It is difficult for them, however, to give up their wish to return to the pre-injury selves. Lisa, who had sustained TBI almost 30 years before, rarely expressed such a wish in our interviews, but she was an exception among the informants. The individual whose accident occurred recently tends to have a strong wish to restore previous conditions of the self. For example, Ms. Anderson, who had sustained a car accident one year before, wrote, “I want to be me again” while making every endeavor to recover (personal communication, July 18, 1995). Even several years of TBI experience, which was a characteristic shared by most informants, did not make the informants abandon the wish to return to the preinjury conditions. For example, Ms. Thomas still wanted to be the pre-injury self seven years after her accident. She wrote, “First thing in the morning when my eyes look in the mirror, they see today but they also see yesterday and that’s a sad thing and I can’t help” (personal
152 Devalued Self communication, April 5, 1995). It seems that they were living with the “not me” while continuing to hope the restoration of the “real me.” The hope of recovery may have positive effects on TBI survivors’ present lives. For one thing, it allows the person to alleviate negative feelings toward oneself and to put up with difficult experiences. Linge (1990), after reviewing his TBI experiences, suggested that the sense of hope is the most important for TBI rehabilitation. He wrote that the presence of hope, together with faith and love, was “the best indicator of whether an individual is going to come through the experience of head injury with gains that outweigh the losses” (p. 126). Also, Mr. King stated more concretely how hope worked in his daily life. When he had a hard time because of the changed self, he said to himself that things would be easier someday (personal communication, July 16, 1995). This helped him to let the discomfort go and to relax. No matter how difficult the present life may be, the person who has the hope of recovery can believe that the difficulty is just temporary and passing. For another, the belief in recovery can motivate the person to engage in activities while hoping to improve their bodily or cognitive functions. Jack, for instance, remembered that he had chosen a part-time job of pushing a cart at a grocery store because it would facilitate the recovery of his balance and muscle strength. Also, Norm was actively practicing his memory skills while saying, “I wish I could get better. That’s what I’m keeping concentrating on.” Thus, the hope had a power to organize their activities. It gave them something to do and probably opportunities to expand their experiences. In addition, the hope of recovery might facilitate the recovery by producing the self-fulfilling prophecy (Conrad & Schneider, 1992). When the person makes an effort to realize the hope that he or she believes in, it is more likely to come true.
153 Devalued Self How to believe in the recovering self. The narratives of people with TBI include some techniques to keep the hope of eventual recovery. As I mentioned above, the individual in the post-acute stage recovers slowly, and so one cannot be sure whether one is really recovering. Then, people may need the ways not to lose the belief in the recovering self. Some of the informants were attentive to events that might signify their recovery. These events seemed to represent critical moments in their lives. For example, Richard had not been able to keep a phone number in mind until he finished dialing it. One day, however, he found that he could do it; I was in downtown and in another business, and I say, “Can I use your phone book?” They handed me the phone book. I looked up the number, and then I turned, dialed the number, made the call, and didn’t realize what I’d done until... minutes later after that, I got shocked! I thought, “Wait a minute...” (...) I thought great! Oh, I thought tremendous. It was like, “Wow! On top of the world!” He remembered this experience as one of the most exciting moments after his TBI. It seems that this memory still helped him to maintain the hope that he was recovering or he could recover. As the meaning of recovery varies with the individual, so the memorable event that supports the belief in recovery varies. Events that other informants experienced may not look as dramatic as Richard’s. Ben, for instance, told me that he had found his memory coming back when he discovered his resume without searching for it for a long time. That happening appeared trivial to other people and might be just coincidental, but it was a memorable event for Ben. Furthermore, events to be remembered may not involve cognitive or physical functions of the individual; it may be related to more abstract values that he or she considers important. As I mentioned once before, Karen remembered that she had found a part-time job at a pet shop without relying on an agency worker. She said, “I got that job on my own because I didn’t like
154 Devalued Self that they were finding for me. (...) I felt good about a job and how I got it.” She was not really a woman of many words, but she was eloquent when she told this story. It seems that this story was consistent with her values of being independent and autonomous while showing her recovery. The individual with TBI may use other people’s perceptions to make sure of the recovery achieved thus far and to keep the hope of further recovery. For example, Ed’s belief in his recovery was, at least partly, based on his company’s evaluation of his ability as well as on the fact of his return to his previous job. He said that the company “took me because they knew I was worth it. They checked me to make sure I was able in their eyes to come back.” Moreover, Ed was still making an effort to restore the previous self. He stated, “I’ll keep working on it for ten years, twenty years. (...) I think I’m going to be very close to be 100%.” According to him, this motivation came from “people’s caring and love and understanding.” He was doing this endeavor because other people wanted him to recover. His belief in his eventual recovery seemed to be supported by other people that he internalized in his mind. Dilemma of keeping the hope. As I described above, the hope of recovery certainly allows individuals with TBI to believe that their present situations will become better in the future. Yet they may get themselves into trouble when they depend too much on that hope. Some informants were afraid that the hope of recovery might justify their “denial” or neglect of the reality of present selves. Thus, while they assumed that the present selves would be just transient, they could believe that they did not have to look straight at their present selves. Ms. Kline, for instance, advised other TBI Support List members on the Internet not to have too many hopes because these hopes might make it “much harder to finally accept reality” (personal communication, February 6, 1995). She resolved to be strong enough not to “deny” the reality of
155 Devalued Self herself even if it was harsh. She supposed that the hope of recovery might stagger her resolution by justifying her disregard for the seriousness of her present conditions. Some other informants believed that the hope could make them waste their time. Dann (1984) reported that hope had “enabled me to unrealistically plan my life, dreaming of lifestyles which had little if any feasibility” (p. 11). She warned other survivors that hope, if it is unrealistic, might urge them to do things useless in changing their present conditions. Another informant who sustained TBI three years before, Mr. Bennett, blamed the hope of recovery for keeping him from adopting proper measures against his functional changes. He wrote, I would have hoped that I would have had someone look after me properly from the beginning rather than letting me stew in confusion and misery for 3 years with the hope that things would get better on their own. (...) I was left dangling with nowhere to turn and told to wait it out, i.e., You are walking, talking, and breathing. What more do you want? Shut up and wait. (Personal communication, June 16, 1995) He seemed to feel that he had been deceived by the hope as well as the professional who provided it. The hope of recovery, especially the hope of spontaneous recovery, may make people with TBI more confused if it does not take place. People with TBI may become more negative toward themselves when they come to think that the hope might be an illusion. Conrad & Schneider (1992) pointed out that hope to reach a goal could cause a pessimistic feeling in the individual if one discovers no way to reach the goal. This may be true of people with TBI. For instance, Ms. Ford was depressed when she repeatedly failed to manage the “sensory overload,” feeling that all her efforts for the recovery were futile. She wrote,
156 Devalued Self I am at my wits end and very much in despair today. I feel I have wasted my time chasing a dream of being somewhat normal again. I am highly functional but this feeling of out of order in space and time is devastating to me. I am at a loss and ready to give up. (Personal communication, March 31, 1995) This remark suggests that, although the hope supports one’s daily life as long as it appears realistic, it may drive the person to despair anytime when it begins to appear unrealistic. To distinguish a “realistic” hope from an “unrealistic” hope is no doubt difficult. Everyone’s future always includes some extent of uncertainty, and the uncertainty will never completely disappear. The belief in the hope of recovery has an element of gambling for people with TBI. The Rhetoric of Downward Comparison People with TBI may employ rhetorical tools to attach more value to the present self. When they support the present lives by believing in the hope of future recovery, their present selves remain devalued, or at most having a lack inside them. The source of value is still the preinjury self. However, self-narratives of people with TBI show that there is rhetoric to make the present self look more positive and valued in itself. They contrast the present self with comparable images that are apparently more negative. These images may come from other TBI survivors with more severe symptoms or their own past that can be reinterpreted negatively. This comparison, which can be called “downward comparison,” enhances the person’s sense of wellbeing by allowing him or her to consider that the present self is relatively better than its counterparts. Imagining more negative results of TBI. The individual with TBI may try to believe that, no matter how difficult his or her life may look, he or she is still lucky because an even more difficult life is possible to envision. Some informants often said, “Things could be worse.”
157 Devalued Self This phrase suggested that they redefined or reframed their present selves while juxtaposing their current situations, including their functional changes, with possible worse ones. When Ben remarked, “My hand-writing is not the best, but it could be worse,” he might suppose a situation in which he could not write at all, for example. “Things” that could be worse may be not only functional changes after TBI but also more general life situations. Don frequently used this phrase when he casually talked about his everyday life. He stated, for example, “Something wrong with my car brake, but it’s all right. Things could be worse.” Although he did not explicitly refer to the object of comparison, he seemed to have in mind a more negative condition that he could experience in his life. A model of a “more negative condition” can be supplied by other people who sustain apparently more severe TBI symptoms. This comparison allows the individual to pay more attention to his or her residual functions instead of what has been lost. For instance, Ed used to employ a technique suggested by his nurses, in which he saw other survivors in the hospital to soothe his feeling of grief about his loss. He recollected what the nurses had said; “A lot of people are a lot worse off than I am, and... knock it off. You’re getting better; they never will.” He followed this advice and believed that he was still lucky. Also, the comparison with other TBI survivors may serve the individual in restoring self-confidence and having motivation for future planning. Sam remembered that seeing and talking with other survivors had been helpful in starting to think about what he could do in society. He said, “You know, ‘OK. I did survive.’ You talk with some more people who survived. You see, your injury is not the worst.” He did decide to return to school while wondering what he would be able to do in the future with his remaining strengths.
158 Devalued Self The individual with TBI may make a comparison between oneself with other survivors not only as to physical or mental functions but also as to entire life experiences. The individual can attend to positive aspects of his or her life as a whole through this comparison. A typical example was found in Richard’s narrative. Talking about a young friend with TBI, he said, I was older. He was a younger man when he got injured. I was thirty... seven? Yeah, I was 37 when I was injured. So, I already lived pretty much my... you know, not much was going to be changed for me. I didn’t miss anything. You know, I have pretty much a life experience by 37. (...) I feel bad for them [younger people with TBI] because they are never going to have, have girlfriends... It is doubtful whether young men with TBI really cannot have girl friends, but this comparison certainly helped Richard to reinterpret his entire life and to see it more positively. It should be noted that the comparison of oneself with other survivors does not always give emotional benefit to the individual. Some informants reported that they had bad feelings when they saw other survivors who faced more serious challenges. Ed, for example, did not use the downward comparison very often now, saying, “A lot of kids that I know at St. Peters [a rehabilitation hospital] will never get better, and that hurts me. That breaks my heart almost. (...) Because they’re my friends.” It seems that the more the individual senses that one is connected to other survivors, the more one comes to feel sorry for them. Also, the individual may feel uncomfortable or anxious because other survivors remind the individual of his or her own earlier stages of recovery. Fred, for instance, considered that TBI survivors whom he knew reminded him of the stages that he had gone through so far. He said, “I went through all of them. I was them.” He seemed to feel that they represented a possibility of functional deterioration that he might sustain. He added, “I kind of keep my distance from them because, when I am around
159 Devalued Self them, I see how easy it is for me to fall back in.” Thus, contrasting with other survivors can make the individual sense his or her vulnerability. Reframing the pre-injury life. Another object of comparison that people with TBI can take is their own images of the pre-injury self. As I discussed above, they mostly evaluate the pre-injury selves more positively than the present ones, and so they regard the former as ideal images or as goals to achieve. They may focus on negative aspects of the pre-injury selves, however, so that their present lives can look neutral or more positive. Some of the informants mentioned that even their functional changes, which primarily carried negative meanings, had made their lives better in certain respects. Ed, for instance, reported delightfully that his taste loss enabled him to eat cabbage and coconut, which used to “nauseate” him. Ms. Burns, who had sustained a brain tumor five years before, also wrote that her loss of taste was a “blessing” because it had enabled her to lose much weight (personal communication, June 17, 1995). When they evaluated the present, they paid more attention to the apparently negative characteristics of the past selves, namely, being too particular about food and being fat. For another example, Lisa said, “I think I have always suffered a bit with attention deficit.” If she had been always living with that challenge, she could believe that her life was the same between before and after her accident. It seems that this rhetoric, at least, neutralized her present conditions that were apparently negative. When people with TBI contrast present selves with pre-injury selves, they may focus on more general life situations that they had before the injury. Some other informants carried stories that they had not been happy with their selves before the accidents. Jack, who had been a college student when he had the accident, described his college life like this;
160 Devalued Self In college, you have to be... do this, do that, do that, and all... when it’s done, or you get them done, so you move on to the next. It’s easier [now]. (...) Yes, I was a college student. Yes. But... my grades were not that good, so... and then, because I didn’t... little enthused. I’m from a small school, where there were some 50 people in my class, to a humongous university. This remark suggested that he had not adjust to his collage life then. For another example, Sam believed that his previous job as a computer programmer had not fitted his personality. The results of an interest inventory that he took after the injury confirmed this belief. He said, “The scores picked me well, a test on computer. The programmer which I was doing was going to my weakness.” He felt that he was now in the right field, photo-journalism, although his functional challenges overwhelmed him at times when he studied at a graduate school. Furthermore, some people with TBI regard their pre-injury lives as negative according to the moral standards while appreciating their “straight” lives at present. As I mentioned before, Don’s narrative showed that his near-death experience made him resolve to mend his ways of living. He used to be a “city kid” who committed theft, made threats, and was violent. However, he now described this conduct as “stupid” and “bullshit.” He told me, “I don’t have that violence any more... I am not the same person any more.” He also attached positive meanings to his life changes after the injury; It [My life] is different. I mean, for the first time in my whole life, I had my apartment for seven years. I’d never been in a place that long. I’ve always lived different places in my whole life. (...) The longest I’ve ever gone with a girl. I went out with Alice [the girl friend] for five years. That’s the longest I ever went with anybody. I never really got
161 Devalued Self attached to people. I would use them, but they would use me. And then [I] dump them. But Alice is different. At the same time, he was aware of some functional challenges after the accident, which still bothered him from time to time. When he focused on the good aspects of his post-injury life, however, he could evaluate his present self more positively. He believed that those aspects resulted from his new life style. With this type of negative interpretation of the pre-injury life, the person may regard the accident as a turning point that ended the unhappy life. A few other informants kept in their selfnarratives the same theme concerning alcohol and drug abuse that they had gone through before the injuries. Ben, for example, said, “My use of alcohol mixed up things for me quite a bit [before the accident]. I just... When I had my accident, it was kind of a balancing because it stopped my drug use and alcohol use for a while.” It was a little after the accident when he completely stopped abusing alcohol and drugs, but he considered the accident an important step toward abstinence. Also, Fred said that he thanked the woman who had hit him in the accident because he could stop drugs after the accident. He told me, “If she didn’t do what she did, I probably would be dead by now if I lived the same way I was. Since I was doing 5,000 dollars of cocaine a week, I would have killed myself.” Here he extrapolated his pre-injury life to imagine his possible present in which he would have been dead. He believed that his actual present life was much better. Attachment of Positive Value to the Present The downward comparison is a countermeasure against the ordinary, “upward” comparison with the pre-injury self. Both types of comparison are similar, however, in that the individual’s present status is assessed in reference to another possible self-image. People with
162 Devalued Self TBI may want to attach a positive meaning to the present more directly without making such a detour. When Dann (1984) wrote, “I am what I am, no more, no less” (p. 11), it seems that she attempted to establish the image of herself at present beyond comparison. In fact, many informants focused on the here-and-now rather than sticking to the past or others. Some modified the concept of recovery while stressing the self that was somehow preparing for the future. Some reinterpreted the TBI experience as significant for their lives. Furthermore, some of them gain new identities and new goals, based on the re-interpreted TBI experiences. Concentrating on today. Many people with TBI are aware that they cannot expect immediate recovery but can enjoy small accomplishments day by day. It seems that they avoid direct comparison between their present selves with the pre-injury ones to appreciate value of the present. Ms. Burns, for instance, suggested that survivors of brain injuries should concentrate on today and solve the day’s problems one by one. Responding to another email sender who had written about his enduring functional changes, she wrote, “Best suggestion = everyday is new and everyday has its own problems, rewards and solutions” (personal communication, July 17, 1995). The similar idea was also represented in the phrase of “One day at a time,” which Karen took as her motto. She said, “One day at a time. Don’t rush it, take it as it comes. Like tomorrow, whatever comes tomorrow, comes tomorrow.” This did not mean that she lived only for the moment without a goal; rather she had a dream of having a permanent job and getting married. She believed that the repetition of “one day” would carry her to the goals someday. Whereas Ms. Burns and Karen still maintained a weak link between “today” and their goals, some other informants stressed the intrinsic value of the here-and-now. They did not refer to their future or their past to evaluate the present. For example, this is Mr. King’s reply to another email sender who sustained apathy and indifference; “When you were a child did you
163 Devalued Self ever have times when you felt wonderful and excited, curious? Every day there are marvelous things to see and hear and touch” (personal communication, July 16, 1995). This remark suggested his belief that one could enjoy life by taking pleasure out of interaction with the world at each moment. In other words, “today” is valuable in itself for one’s life so that one does not need any absolute standard for the evaluation. This idea is consistent with a counseling technique through which the client can rediscover value of the present. As often mentioned, “Because the past is gone and the future has not yet arrived, only the present is significant” (Corey, 1991, p. 233). When people with TBI concentrate on today, they may avoid “upward” comparison with the pre-injury self or other ideals that they cannot achieve easily. For example, Fred used this strategy so that he could be more comfortable with himself. He emphasized the importance of “today” for his life while dissociating himself from the distant past and future. He told me, “Today is the only day that exists,” and “Today is going to be the best day that I can get.” At a panel discussion about TBI in which he was one of the panelers, he said to the audience, Every day, I live for today. I do everything for today because, to me, the past never comes back. (...) If I look at life from that respect, it gives me respect. It gives me hope. That’s [how?] I can make today, like, better than yesterday, and I don’t worry tomorrow. It seems that he restored some sense of self-worth by discarding an apparently unattainable goal as a criterion to evaluate his present status. I stated earlier that he used the rhetoric of downward comparison, but he additionally paid more attention to the present to avoid “upward” comparison with the pre-injury self. Modifying the goals of daily efforts. People with TBI may transform their goals of rehabilitation toward which they make efforts every day. Some of the informants did not like to
164 Devalued Self use the words like “recovery” and “healing” to refer to their goals because these words were strongly associated with the pre-injury conditions. Instead, they adopted words like “progress,” “improvement,” or “getting better.” For instance, Ms. Clark contrasted the concept of “progress” with that of “healing.” She wrote, I would not confuse healing (a physical process) with progress. I am a die-hard optimist, but I believe there is always progress to be made. Compensatory strategies can be learned which can help an individual “get around” or cope with some of their deficiencies. New skills can be learned and old ones practiced. (Personal communication, June 25, 1995) Mr. Chase also distinguished the expression of “getting better” from the word “cure” while quoting his psychologist’s statement. He stated, “My psycho said early on that the most important thing in my treatment was for me to believe that I was going to get better - not cured, but better” (personal communication, April 1, 1995). By rephrasing the goals of their efforts, they seemed to change the reference point or baseline with which they compared themselves. The baseline would be in their pre-injury status, particularly their physical conditions, if they used the words like “cure” or “heal.” When they adopted the words like “getting better” or “progress,” however, the baseline would become their present status from which they could change themselves in positive directions. This strategy reflects the rhetoric of focusing on today, which I have just mentioned above. Furthermore, some people with TBI postulate alternative goals while introducing another criterion for what is more important for their lives. They believe that they can “recover” differently even if they fall short of the goal of recovery to the pre-injury status. For instance, Linge (1990) believed that individuals with TBI could attain better lives in spite of the challenges that they continued to experience. He wrote, “I made a long journey out of the
165 Devalued Self shadows into a larger, brighter world than the one I had left behind before my injury” (p. 128). This change of the world involved “another level of recovery” (p. 127), which meant achieving “productive, giving, and growing personhood” (p.125). In his discussion, the concept of recovery came to have a religious nuance, which was more concerned with the person’s spirit and soul than the person’s functioning in the secular world. This rhetoric may sound convincing especially to people who believe that religious values are essential for their lives. TBI as a learning experience. Linge (1990) remarked that he could get a chance to achieve another level of recovery because of TBI, but other informants also felt that they had learned something from the TBI experience. They believed that they were changing in positive directions while modifying their views of themselves. For instance, Ms. Ford wrote, My TBI has made me more aware of the different ways that students learn and I have been able to get through to all my students by using different methods of teaching. I no longer leave any of the steps out (like in math where you can do things in your head and skip a step to get the answer). There is nothing black and white any more. Everything I do is spelled out step by step when I am teaching. (Personal communication, September 30, 1994) Although she added after this statement, “I never thought that my TBI would be positive to me,” she had learned a lesson from her TBI experience. She could use it at least to improve her performance in her job. Thus, TBI can be reframed as a learning experience through which one can become more knowledgeable and more skilled. Several informants integrated such learning experiences into their future plans or their dreams. As mentioned before, Fred planned to start an agency that would help other people with disabilities to get information about community resources and opportunities. He said that this
166 Devalued Self plan came from his TBI experience. Thus, he had “hit a lot of brick walls” when he tried to get good assistance from the social service system. This experience had taught him how to deal with the system. He said, “I know all the manipulation things... everything [about the system]. I’m good. I did it.” The agency that he was planning would become a place where he could make good use of his experience after TBI. For another example, Lisa linked her TBI experience to her future plan. She stated, “I think it [the TBI experience] is really expanded my appreciation of other people and problems.” At the time of my interview, she was studying at a graduate school. She had quit her career as a real estate agent to become a rehabilitation counselor. Thus, TBIrelated experiences of Lisa’s and Fred’s provided new directions for their careers. Some other informants, including Don, Norm, Ed, and Sam, were also interested in helping people with disabilities or TBI, even though they did not directly link this interest with their careers. Ed believed that his experience of overcoming difficulties enabled him to be a role model for other people with TBI and to teach them many things. He said, “I’m not professionally trained to help people. But, at least, I’ve been there, and I can encourage them [other TBI survivors] to try to do what I’ve been doing.” Also, Sam was glad to take a position of chairperson in a local TBI support group. He wanted to provide every participant with an opportunity to talk in the meetings. He said that he knew how frustrating it was to have no one to talk with. He had learned it when he had lost his voice for a while after the accident. Like Ed, Sam attempted to make his TBI experience more meaningful by using it to help others. One may be able to put up with one’s difficult experience when one can attach significance to it. Redefining the present self. Finally, people with TBI may reframe their present selves so that the selves can look more significant according to cultural values. The individual with TBI may not be able to think of him or herself as carrying common cultural value like being
167 Devalued Self “intelligent” or “physically attractive” (Prigatano, 1991). The individual can find another value that is applicable to him or her, however. For instance, Ed redefined himself as a “strong and determined” person who had defeated incredible difficulties. He stated, I don’t want to forget how bad I was because... I feel that I’ve worked so hard and trying to be better that... why should I forget it? I deserve a pat on a back for it. (...) I like the idea of being... a guy that has been through something this bad. And I’m strong enough, mentally and physically, to conquer it. I like that feeling. I’m not a tough guy, not a big, strong, mean, son of a gun. But I’m proud that I was this strong and determined to get better. He identified himself with some American heroes like John Wayne, who had always been Ed’s idol. Also, Ben was proud that he had not drunk for eight years after his TBI. He believed that this abstinence proved the power within himself, which represented another value that is acknowledged in this culture. Redefinition of the self like these are grounded not only on the past experience associated with TBI but also on the present attitude toward TBI-related changes. For instance, Sam described himself as a brave fighter against his life changes, which he called “challenges,” not “difficulties” or “disability.” He also named his compensatory strategy for his functional change by associating it with the image of a combat. Thus, the list of his belongings that he lost was named the “missing in action list.” He explained, “This word is from Vietnam War, Missing-inaction, soldiers, people. So, everything I lost was very important. Items... pen and keys and notebooks or whatever.” With this “missing-in-action list,” he imagined himself like a fighter or a soldier who continued attempting to beat the challenges. Similarly, Mr. King characterized himself as “one of those no-quit people,” namely, the person with an indefatigable spirit. He
168 Devalued Self went on to state, “If there is a way, I will find it and have for my entire life which has never been easy” [the emphasis is his] (personal communication, May 30, 1995). These informants’ characterizations of the self may reflect one aspect of Western value that makes much of the independence and power of the individual. Moreover, the word “survivor,” which some people with TBI prefer to other words to call themselves, seems to represent the rhetoric of redefinition of the self. Again, Sam liked to be called a “survivor” because it carried a nuance of strength and power. He could have a more positive image of himself with this word than with other words like “disabled” or “handicapped,” which he believed to carry negative connotations. Ms. Turner was also comfortable in using the word “survivor” since it put “the emphasis on the getting on with your life without ignoring the fact that you can’t take the injury again” (personal communication, October 5, 1994). Society still used the term “TBI victim” at times. She considered that it was likely to create another negative image because the word “victim” carried a nuance that the person was passive to the event. As Rosen (1994), another “survivor,” suggested, people with TBI do not believe that they are passive, not only to their TBI but also to societal prejudice and discrimination. Concluding Remarks People with TBI often experience loss of self when they compare the present selves with the pre-injury selves. In this chapter, I called this category of loss of self the “devalued self.” The individual with TBI tends to regard the present self as not “real me,” responding to it with anger and frustration. On the other hand, he or she is likely to consider the pre-injury self to be “real me” while remembering it with the feelings of grief and sadness. This chapter also illustrated that many people with TBI constantly try to change their self-narratives to restore the values of themselves. They may use the rhetoric of downward comparison to make themselves look more
169 Devalued Self positive by contrasting the present self with other, apparently negative images. They can also find alternative value that is irrelevant to their current functional changes, or they can put up with these changes while attaching positive meanings to their TBI experiences. The analysis in this chapter revealed that the experiences of having the devalued self and overcoming it occur not only in the conversation between the present self and the pre-injury self. These experiences also involve one’s view of the entire life that extends from the past to the future. Moreover, they are under the influence of the cultural values that they have internalized. It is necessary to pay attention to those broad contexts to understand the category of devalued self.
170 Labeled Self
Chapter 7
THE LABELED SELF
In the last two chapters, I discussed how a person with TBI experiences loss of self in an apparently private world where the person confronts the self by him or herself. These chapters also revealed, however, that society, culture, and others were often concerned with the person’s understanding of the self, and so with the loss of self. This chapter will examine more explicitly such societal influence on loss of self while focusing on another major category of it, which I call the labeled self. As I pointed out in Chapter 2, an individual takes other people’s standpoints when he or she develops a self-understanding. Thus, the self is generated in the dynamics between a self-image that the person believes to be and another image that other people have about him or her. If these two images are totally inconsistent, the person will be at a loss to know who he or she is in society. This is a common experience found in the narratives of people with TBI as well. They find that society provides some names, or labels, for them, but those names do not always convey meanings congruous with their beliefs of who they are. In a sense, they have lost the shared meaning of the self in society. Like the last two chapters, the first half of this chapter will describe the nature of the category of labeled self. In the second half, I will discuss the strategies that people with TBI use to deal with those names or labels.
171 Labeled Self Social Definitions of the Self with TBI First, I will describe the variety of social definitions experienced by people with TBI. They obtain many messages from society about who they are and what they are. These messages may include certain names or labels associated with their appearance and overt behavior. Diagnostic terms that carry special meanings to other people are also among these messages. The individual with TBI often senses that the meanings carried by those terms or labels contradict with his or her own self-definition. Some meanings are more negative than the individual believes he or she actually is, whereas some meanings are too positive for the individual to present to others. Many individuals with TBI feel that society presses upon them labels that signify their qualitative difference from other people without TBI. The Strong “Me” from Society Many people with TBI experience that their relationship with society has been different since their TBI. As I introduced in Chapter 2, Mead (1934) postulated that social interaction involves the dynamics between the “Me” (the self defined by others) and the “I” (the individual’s spontaneous reaction to the “Me” and other external stimuli). These two ordinarily maintain delicate balance, but they seem to become unbalanced after sustaining TBI. Thus, the individual with TBI notices that other people are more likely to watch and categorize him or her than before. As a result, the individual is obliged to be more conscious of how he or she appears to others. The individual also finds it more difficult to present the self against other people’s views even if he or she disagrees. When one sustains TBI, other people manifest themselves differently in many ways. The power balance between the “Me” and the “I” is changed in social situations, with the “Me” overwhelming the “I.”
172 Labeled Self Powerful professionals. The individual with TBI meets many people with whom one did not have much contact before the injury. They include medical professionals, rehabilitation workers, insurance agents, and legal professionals. They are supposed to have expertise in each profession and so have some power over the individual with TBI. This power allows them to define who he or she is and to control what he or she should do. The individual with TBI is concerned particularly with medical professionals. They diagnose the individual, prescribe treatment, and supervise him or her to see if he or she observes the medical regimen. This relationship may continue for a long time even after the individual is discharged from the hospital to the community. As long as the individual with TBI believes that professionals’ supervision is consistent with what one wants or needs, one may feel comfortable with the power of the professionals. Some informants experienced such happy relationship with the professionals in the early stages of rehabilitation. The informants remembered with good impressions their physicians, therapists, and nurses whom they met during their hospitalization. For instance, Fred, who was very critical about current TBI rehabilitation system, gave a favorable appraisal to a therapist that he had worked with in the hospital. He said, One person who I really cannot forget is my physical therapist. She was great. (...) I was, I was after being a year in a chair, I walked. She did this. I have to give her a credit. She was, she never... This is one thing that I love about her. She never said... Because I heard other therapists say it to people, heard other therapists say, “We’re going to to this thing.” She never said that. She always asked, “I was thinking we could do this, but how would you like to try that?” She always left the decision to me [The emphasis is his].
173 Labeled Self He believed that the therapist had fully understood his wishes at the time. Thus, he had wished to practice the ambulation as well as to maintain the control over his own activity. His therapist had respected these two kinds of wishes, so he never said “no” to her suggestions. Similar good relationship could be seen in Ed’s narrative as well. He called his nurses “friends” and still visited them for a chat when he had a chance to come to the hospital. On the other hand, some other informants experienced professionals’ power as seriously oppressive to them even in the early phases of rehabilitation. The power could change its meaning when the individual did not feel that the professionals understood his or her wants and needs. Sam, for instance, told that he never had a good experience in the rehabilitation hospital. During his hospitalization, he could not express any frustrations about his conditions and the hospital environment due to the loss of his voice. He finally showed this feeling by “throwing food and plates against the wall” when he found “the food was extremely terrible.” After a few occasions of similar conduct, the professionals called him a “patient with a behavior problem” and even shut him in a small room for a while. Ms. Kline also defined the medical professionals as “someone who’s putting you through the hell” (personal communication, September, 18 1994). She believed that they treated her like the object of their job rather than “a person.” Thus, professionals may appear to the individual with TBI almost as persecutors who exercise unjust power. When such powerful professionals apply a diagnostic name to the person with TBI, it also exercises power to define him or her as a whole. Many informants accepted the name given to them, believing it inevitable to be categorized as long as they live in society. They said, “We all need some labels [to understand things]” (Richard), or “They [terms applied to him] are just classification” (Jack). The informants also got some benefits by accepting a name like “a person
174 Labeled Self with disability.” They could receive Social Security money, for instance, when they were categorized with that name. However, they might still feel that the name given by the professionals threatened their individuality or uniqueness. Sam, for example, stated, “I don’t like the word ‘disability.’ I, I just... You know, that’s just society’s way of saying, you know. They [people] are more unique.” On the Internet TBI Support List, too, Ms. Thomas emphasized that she and other people with TBI were more than the name of TBI. She wrote, We communicate so tightly only about brain injury that we forget there is more to the people we are communicating with. I’m curious about the ways people on the list define themselves outside the boundaries of brain injury. (Personal communication, September 4, 1994) She felt that there was a boundary around her that interfered with the self-presentation of her uniqueness beyond the term of TBI. It seems that diagnostic names are powerful enough to engulf the individuality of people with TBI. Being seen in society. Many individuals with TBI are conscious that they are evaluated by others in society, not just by professionals in a rehabilitation hospital. This is especially true when their functional changes are visible. Jack, for example, believed, “People look at me when I’m walking in the room.” Even now when he walked, his movement certainly looked different from others. He seemed to be still conscious of himself in front of strangers in society although he said that he did not care about other people’s eyes very much,. Fred also remarked that one of his legs, which was replaced with an artificial leg, frequently attracted other people’s attention. He stated, “Society stares at my leg when I walk down the street, a short one. Society has things to say because I am different. I know that.” Thus, other people’s eyes made him define himself as different from them.
175 Labeled Self Even if there is no visible change on the body, the individual may be worried about how he or she appears to others in social situations. Mr. King, for instance, stated that he became nervous and felt “kind of on-camera” when his speech errors occurred in front of others (personal communication, July 18, 1995). Also, Ms. Kline could not go out and see other people for a while after some experiences of mistakes. She wrote; I was very conscious of my head injury, and somehow felt it made me stand out as a “freak” or “oddity,” imagining myself to appear much worse than I actually was. (...) In many ways, my head injury made me feel like a teen ager again, and we all know what those days were like! (Personal communication, January 2, 1994) Before other people’s eyes, the individual with TBI is divided into the “real” self and the “apparent” self. To be aware of the latter, one may have to attend to other people’s reactions all the time at the cost of one’s own activity. Meltzer (1983) wrote that he could not concentrate on the conversation because he was always wondering if he was doing right. Here again, people with TBI are under the influence of other people’s views. Like definitions given by professionals, other people’s views of the individual with TBI can be too powerful for the individual’s self-description. It seems as if other people could take a privileged status to view the individual with TBI. Don was one of the informants who often confronted the power of other people. According to his narrative, a maintenance man of his apartment, who was on bad terms with Don, recently brought tales to the manager. The tales said that Don was always threatening other tenants. In a meeting with the manager, Don told her that the tales were not true. His behavior could be rough when he was in a bad mood, but that was just once in a while. However, “She [the manager] didn’t believe anything I said,” and “She always believed in other people,” Don said. After that, she told him to find another apartment
176 Labeled Self and to move out of the building. Thus, other people’s views are likely accepted as truth or as more trustful remarks than the TBI survivor’s views of him or herself. An individual with TBI may form a bad opinion of neighbors or society because of their power exercised over him or her. A few informants believed that others might take advantage of them while using the powerful status. In Karen’s narrative, for example, this theme appeared more than once. She suspected that her friend might have laid the blame for the accident on her; that the rehabilitation agency worker might have filched the achievement of her finding a job; and that her supervisor at the pizza restaurant might have accused her for making “watery” dough although she actually did not make it. Furthermore, when I asked what he had learned after TBI, Don promptly answered, “Not to trust anybody.” He went on to say, I always think people have an angle. (...) People are fucked up. One minute they are your friends, the next minute they are your enemies, so. You don’t let them close to you so you don’t have to worry about it. I don’t know. This belief could have been developed when he was younger and living on the street. Don’s experience after TBI, however, did not change this belief in spite of his resolution to mend his way. Rather, his TBI-related experiences may have even confirmed this belief. Thus, some individual with TBI develops ill feelings toward others and society while confronting the strong “Me.” Negative Images Attached to People with TBI The strong “Me” from other people includes negative images about the individual with TBI. As discussed in Chapter 6, many individuals with TBI consider that they carry some changes that can devalue them. They attempt to limit these changes to a certain aspect of the self, but these negative images do not allow them that attempt. Thus, these images may spread to the
177 Labeled Self entire self to make people with TBI look more “abnormal” or more “helpless” than they actually are. Those negative images may involve the terms that medical professionals and society apply to the individual, such as “TBI” or “disability.” Appearance or overt behavior of people with TBI may also make others to attach negative images to him the individual. The image of “abnormality.” Many individuals with TBI feel that they are regarded as “abnormal.” It seems to them that other people suppose TBI survivors have lost the essential characters or dispositions that constituted them before. The last chapter showed that the individual with TBI often maintains the identity even though his or her functioning has been partly altered since the accident. However, other people’s attitude suggests, “No. You are not the same person any more.” The individual may believe that altered appearance or overt behavior results in other people’s misunderstanding. Mr. Myers, who sustained a brain injury due to a stroke, wrote that the change in his speech influenced other people’s view of him; My speech was affected somewhat mildly, but I’ve noted that people who don’t know me assume the worst. I’m the same person I always was (well, I don’t pun as incessantly – some people consider that an improvement!) but a slight speech impediment just turns some people off [the emphasis is added]. (Personal communication, July 25, 1995) He did not clearly state what “the worst” meant, but another informant mentioned that she was labeled as “stupid” because of her speech problem. They felt that their appearances or surfaces masked more essential, “normal” characteristics of theirs from other people. Similarly, some people with TBI receive the labels like “mentally ill” or “retarded” from society due to their overt behavior. That was one of the concerns when Richard talked about his TBI. He took an example of another survivor that he knew, Alex. According to Richard, Alex was mistaken for a person with mental illness or retardation because his behavior was different
178 Labeled Self from other people. Alex often walked around and offered a handshake to anybody while mumbling something like, “Hi. How are you doing? My name is Alex.” People might associate this kind of behavior with their images of mental illness or retardation, but Richard believed that they were wrong. He said, “He [Alex] doesn’t act anything like somebody who is retarded or mentally ill. He acts very logically. He just does funny things, but there’s no illogical emotion involved.” Richard drew a clear distinction between the image of TBI and that of mental illness or retardation while thinking of a criterion for that distinction. Some of the informants felt that the diagnostic term of “TBI” or “head injury” also conveyed the image of “abnormality.” For instance, Lisa commented on the word “head trauma” like this; I guess one of the fears now is this. If I say, “Oh, I had a head trauma,” then people are going to think that I’m... you know, beyond whole person. You know, then I’m going to be, you know, wacko, or, or... “Oh, no! She can’t...,” you know, “She may not be dependable, she might be...,” you know, “be a behavior problem!” or whatever. She was not completely certain whether people would assume such an attitude toward her brain injury. But other informants stated that people really pressed such negative images upon them by associating the term “brain injury” with “craziness” or “stupidity.” Fred, for example, noted that term created an impression that his brain did not work at all even though only one part of the brain was dysfunctional. Also, Don believed that people had a false idea that the person with brain injury “cannot be intelligent” and “does crazy things.” Given common knowledge that the brain governs the whole mental process, the diagnostic terms like “TBI” or “head trauma” also contribute to the negative images attached to people with TBI.
179 Labeled Self The image of “powerlessness.” In addition of the image of “abnormality,” people with TBI may sustain another type of negative image. Some informants reported that others considered them to be as powerless as children or sick patients. Email written by Ms. Fisher, who had sustained TBI for three years, provided an example. She wrote that she was angry with her physician because he did not treat her as an adult person who had full responsibility for her conditions. Though he was apparently soft and kind, he was not open to her about the potentially unfavorable implications of her diagnosis. She felt that he “patronized” her, believing that she was not powerful enough to accept those implications (personal communication, June 29, 1995). Jack received a similar message from his parents. They took care of him for a long time after he was discharged from the hospital. Although he, as an adult, wanted to move out and to live independently of his parents, they would not give him a permission. Jack said, “They were worried about me too much. They always threatened me, ‘If you go out, then you can’t make your own!’” People may want to protect the individual with TBI out of kindness or love, but their protective attitudes can press a negative image upon him or her. People with TBI feel that the term “disabled,” which is also used to categorize them, has the image of powerlessness. As Rosen (1994) pointed out, this term obviously means loss of ability or lack of power. The individual comes to carry that meaning when one accepts the term. Moreover, some other informants found a sign of powerlessness in their act of accepting the term “disabled.” Sam, for example, considered that making use of the term to justify or excuse his weaknesses suggested his inability to face them. He said, I don’t like to use it [the word “disabled”] as an excuse for not being able to do something. Talk about what you can do or can’t do. Blame it on disability or whatever,
180 Labeled Self it’s irrelevant to me. It’s... most relevant is whether you can do it or not. And... uhm, to say, “I’m disabled so I can’t,” it’s not, doesn’t work in my vocabulary. He wanted to be strong enough to acknowledge his weaknesses as part of his characteristics while appreciating his strengths. He was afraid that he would look more powerless not only because he was categorized with that term but also because he used it as an excuse. Dilemma of “Positive” Terms Instead of negative labels like “abnormal,” people with TBI may find apparently positive terms like “normal” being attached to them. These positive terms, however, may prepare another type of difficulty for them in their interaction processes. As I wrote above, many functional changes after TBI are not as visible as simple physical injuries. Others may not notice the changes in memory, attention, and emotion of the individual, for instance, unless they carefully observe his or her behavior. Also, they may be able to know those changes only through the person’s verbal report. Some individuals with TBI have no detectable brain pathology by CT or MRI (L. Miller, 1996). People around them, including medical professionals, are likely to regard them as “normal” and to expect them to perform as well as people with no brain injury. When the individual cannot meet such expectations, he or she is threatened by other kinds of negative labels, such as “lazy” or “dull.” Similar experiences are also found concerning the term “mild traumatic brain injuries (MTBI).” In this context, terms that sound positive become potentially oppressive labels to the individual with TBI. “Normality” as a label. The individual who has no visible functional change is often distressed by the label of “normal.” Even though one goes through many experiential changes after TBI, other people are unaware of those changes since they are deceived by his or her appearance. Lisa, for example, had to confront her husband’s misunderstanding when her visible
181 Labeled Self symptoms disappeared. She said, “I looked OK, you know. There’s no visible sign any more, and he thought I should be fine.” Her relationship with her husband became awkward as he expected her to function as well as before. He was impatient with her mistakes and blunders, believing that she had recovered enough. Thus, A similar experience was also reported by Ms. Ford (personal communication, July 20, 1995). She found it difficult to communicate her functional changes with people who had known her before the injury. Because her appearance was almost the same, they did not consider her functional changes. She wrote, “They just can’t seem to slow down and let me catch up. It is like I am running a race and I keep falling farther and farther behind.” She, like Lisa, had a problem in her marriage since her husband did not understand, or “denied” difficulties that she experienced. Medical professionals, too, may not recognize the functional changes of the individual with TBI or take his or her complaints seriously. Again, Ms. Ford believed that her “normal” appearance caused the professionals to misunderstand her. They told her, “You don’t look like a TBI person,” and gave no treatment especially for her “sensory overload” (personal communication, April 3, 1995). For a similar example, Richard’s doctors did not accept his claim that he sustained dramatic changes in his memory, attention, and emotion. He stated, You know, I was really... had a problem for a while, years after the first accident, and I got no help from my doctors. They always said, “It was fine.” They also said this was normal. I got a letter from the Mayo clinic, says that I’m normal. The doctors discredited his complaints and provided him with no intervention. His experience of functional changes lost its validity and was returned to him as something he had to deal with for himself.
182 Labeled Self Even if professionals recognize the experiential changes of the individual with TBI, they may normalize the changes. In other words, they put those changes beyond the scope of medical treatment, or on its margin. Richard, for instance, believed that professionals wanted to regard every complaint of his as a consequence of his upset emotions. He remarked, “I think a personal agenda for some of the therapists is to believe everything is emotional. Then, none of them can be head injury.” Other informants also reported that their experiential changes were mistaken for a part of the normal life cycle by professionals. Ms. Anderson wrote, for example, that her psychologist interpreted her memory change was a sign of her aging although she was still in her 40s (personal communication, July 18, 1995). Ms. Ford stated that her neuropsychologist defined her emotional instability as a manifestation of “mid-life crisis” (personal communication, July 16, 1995). When the experiential change after TBI is, thus, reframed as something that anybody can experience, professionals who are treating TBI are minimally responsible for that change. They may be even able to shift the responsibility on the individual with TBI for dealing with it. It should be noted that the individual with TBI confronts a different meaning of “normality” when other people address that concept. I pointed out in Chapter 5 that many people with TBI wanted to believe themselves “normal.” In fact, some of the informants employed normalization strategies similar to those used by professionals that I have just mentioned. To repeat the same example, Lisa and Ed tried to interpret their functional changes as part of their aging processes. The sense of being “normal” alleviated their anxiety that came from the experiences of the opaque self. When other people press the label of “normality” upon the individual, however, he or she may respond to it with some negative feelings. Thus, one may feel sad if the label is considered to indicate the friends’ or family members’ misunderstanding. One may also feel angry if it seems to signify professionals’ unreasonable power. The individuals
183 Labeled Self with TBI want others to understand him or her as a person who sustains experiential changes due to TBI before they regard him or her as “normal.” Threat of other labels. Another reason that individuals with TBI dislike the label of “normality” is that they are afraid that it can be replaced with more negative labels at any time. These labels may imply that the individual has an inherent, pathological problem in one’s personality rather than a medical challenge. In other words, these labels may spread the negative image to the entire self, instead of confining it in a physiological part of the self. The individual with TBI can experience this kind of threat, whether or not one accepts the label of “normality.” I will present first the instance in which the individual with TBI accepts that label. The individual tries to play the role of being normal while making efforts to meet other people’s expectations. If the individual continues to make a mistake in spite of the efforts, others may have second thoughts and recognize his or her functional change. It is also possible, however, that others associate him or her with other labels. Lisa, for instance, suspected that her bosses thought she was lazy when she could not concentrate on her job. Also, Ms. Murray, who returned to her previous job after her TBI, was afraid that her co-workers looked upon her as incapable for that job. She wrote; I am tired of fighting people’s perception of me as “stupid.” I remember times that coworkers would come into my office and ask, “Do you have the answer to that question yet?” And no, I had only finished getting all set up to think about it. (Personal communication, October 5, 1994). These labels of “lazy” and “stupid” do not imply any medical problems that require professional intervention. Instead, they indicate some problematic, inherent characteristics for which the individual is responsible.
184 Labeled Self If the individual resists accepting the label of “normality” and insists upon having sustained TBI, other people may attach other labels to him or her again. The individual can be viewed as a liar or a dishonest person under the influence of these labels. Some informants were afraid that others might interpret their explanation of their TBI just as an excuse for lack of ability. For instance, Lisa felt a concern about revealing her TBI to her teachers in school lest they should “see that she’s just using it as a crutch.” This concern was grounded in her memory in which her family and friends had often taken such an attitude toward her. Other informants saw people believe that mistakes or blunders that these informants made were just fakes. Richard reported, for instance, that his physician considered that he made up his functional changes to get extra benefits. He said, I’m complaining that I have problems of remembering things. The test, to me, shows my verbal IQ is high, and then every memory thing, those are like this [Drawing the low scores on memory subtests in comparison with other subtests]. Now, wouldn’t that tend to substantiate my story that I’m having a memory problem since the accident? You know? He says, “No. That doesn’t mean anything.” They think I did on purpose, because I told them I had a law suit. Thus, when he claimed his functional change by showing some evidences, he found himself in the danger of being seen as a liar. Another informant, Ms. Thomas, also wrote that she was branded “a faker” or “a malingerer” (personal communication, February 8, 1995). She complained of invisible changes that distressed her, but her physician did not trust her complaints. In these ways, the individual with TBI may be defined as not medically but morally problematic when they refused the label of normality.
185 Labeled Self The label of “MTBI.” Medical professionals may recognize the person’s functional changes after extensive neuropsychological examination and give a diagnostic name of “mild traumatic brain injury (MTBI).” It used to be called “post-concussion syndrome,” but current professionals more commonly use the term MTBI (L. Miller, 1996). Some people with TBI consider this term to be confusing and misleading. For one thing, it may not secure the individual proper treatment or intervention. Some informants like Ms. Thomas and Ms. Ford were excluded from medical services even after obtaining the diagnosis of MTBI. According to L. Miller, many current professionals in the field of TBI rehabilitation have little knowledge about how to deal with MTBI. Thus, the diagnosis of MTBI does not make much difference in comparison with the definition of “normality” as professionals cannot provide much intervention for the challenges related to MTBI. For another, some individuals with TBI find a problem with the word “mild” because it does not reflect dramatic changes of their lives that seem to result from the injury. Ms. Fisher, for instance, wrote about the term MTBI, “There is absolutely nothing mild about it. It’s devastating, it has destroyed my life” (personal communication, June 9, 1995). Given this term, the individual feels as if other people discounted or denied the seriousness of his or her functional changes. The individual, thus, experiences not only the functional changes but also the feeling of isolation from other people who would not understand him or her. For example, Ms. Ford found that others disregarded her complaints by saying that her injury was “mild.” She tried to communicate her feeling while quoting another survivor’s poem. The poem said; I can say I’m lucky if I so choose on any given day. But when others say it,
186 Labeled Self I feel as if they discount my pain and don’t recognize my costs, counting me only as alive or dead no matter how hard it may be to endure living. (Personal communication, June 21, 1995). The author of the poem did not refer to the term MTBI, but the same sentiment could be found in the discussion of MTBI among the informants on the TBI Support List. Thus, it would be all right for the individual to believe one’s functional change to be mild. When the same thing is addressed by other people, however, its meaning can change. It seems that MTBI is another label for people with TBI, which may contradict the way they define themselves. A Summary of the Labels Thus far, I have presented several labels or terms that are likely applied to people with TBI, and the second half of this chapter will introduce a few more labels. It is possible to arrange them on a two-dimensional space (Figure 1). This semantic space is constructed on the basis of the ways that the informants used these terms in their self-narratives. One dimension (the ordinate of Figure 1) represents the degree to which the condition seems to be a medical one that necessitates professional intervention. As the term has a higher position on this dimension, the person has less responsibility for the consequences of the condition because it is a physiological process. The other dimension (the abscissa of Figure 1) represents the extent to which that condition seems pathological in social interactions. As the term is located more to the right on this dimension, other people are more likely to consider that the person’s condition affects his or
187 Labeled Self
188 Labeled Self her self. The concept of normality, for instance, occupies the lower, left corner of this space when these two dimensions are used. These two dimensions roughly correspond to the concepts of “sickness” and “badness,” which Conrad and Schneider (1992) used when they discussed the medicalization of deviance. I employed neither of these concepts in Figure 1 because TBI is not a sickness and the word “bad” is too broad in meaning. As I mentioned in Chapter 1, modern society has defined many deviant conditions in medical terms while calling them “sicknesses.” However, it is impossible to view every condition from the medical viewpoint. People still keep two criteria to view and understand themselves and others in their everyday lives. Thus, some behavior is defined as sick and bad, some behavior is sick but not bad, and so on. Individuals with TBI seem to implicitly classify the labels attached to themselves by using the similar criteria. People with TBI sense that society produces some vectors to shift their images. These vectors are represented by the arrows on Figure 2. For example, the concept of TBI, which is located in the “more medical” position on the first dimension, can move on the second dimension, depending on the context. For instance, other people who pay attention to different appearances of some individuals with TBI provide a vector directed to the right, that is, in the direction of “more pathological.” The image of TBI, then, comes closer to the images of “mental illness” and “mental retardation.” Also, society develops another vector to the right in the “less medical” area particularly for people without visible changes after TBI. If they cannot meet the expectation of “normality,” their image will immediately move to the right. It will then come to overlap with the image of personality problem or incapability, which is still not a medical condition, but a pathological one in social interaction.
189 Labeled Self
190 Labeled Self Negotiation of the Self-Image Many individuals with TBI are trying to restore the shared meaning of self while interacting with other people. In the second half of this chapter, I will describe the strategies that the individuals use in the negotiation of their self-images. They may want to present themselves as “normal” persons at first, especially when they do not have visible functional changes. Thus, they resist the vector that is directed to the right, or to the area of “More Pathological.” If they find such presentation of the “normal” self is difficult, they may define themselves as having a brain injury while stressing that it is pathology of their bodies. Some other people may try to dissociate themselves from the notion of brain injury by postulating the intact self beyond that notion. Presentation of the “Normal” Self People with TBI may make an effort to behave as “normally” as they can. Goffman (1963) discussed the idea that individuals with invisible disability tried to pass as “normal” persons whenever possible. In this study, too, the “passing” was a common strategy that many informants who had no visible changes tried to use. The other informants who had visible changes were also careful about their appearances to show their “normality.” It seems to be important for the individual with TBI to present oneself as a “normal” person in his or her social life. Otherwise, for example, employers may exaggerate the consequences of the person’s TBI and have a prejudice about his or her ability. Also, people of the opposite sex may just sympathize with the person even if he or she wants to build a romantic relationship. It should be noted that the meaning of “normality” varies with the individual and the context. People with TBI even try to extend its meaning to include themselves in the range of “normality.”
191 Labeled Self Controlling information about the self. Many individuals with TBI attempt to show their “normal” sides to other people. When the individual does not have any visible change on the body, one may be able to hide one’s functional change while maintaining some contact with others. In Chapter 5, I discussed several techniques that the informants used to deal with their opacity. They used assistive technology to compensate for their functional changes, or they specified the situations in which they might commit errors. These techniques are useful in making the opaque areas more controllable, so that the individual can present the self as “normally” as possible not only to him or herself but also to other people. Also, individuals with TBI may want to confine their functional changes in a certain area of their lives and not to show that area to other people. One example was found in Ms. Clark’s narrative. She could not organize the inside of her house after sustaining TBI, and so she kept others away from the house. She wrote, “I don’t invite many people in [the house] - and the only ones who are allowed in are those people who I know won’t care and/or won’t judge who I am by the way I keep the house” (personal communication, July 14, 1995). Her strategy would work as long as other people regarded that strategy as her natural behavior. As I mentioned in Chapter 5, however, one’s social life will become smaller and smaller as the life space that the person does not want to show is expanded. This may be a disadvantage to the strategy like Ms. Clark’s. Some individuals use different strategies to present their “normality” more actively. The informants suggested that showing solid knowledge about the self served for an important proof of the “normality.” Norm, for instance, was ready to answer the personal information, such as the date of birth, the date of the accident, the length of coma, to the questions from medical professionals. He said,
192 Labeled Self Somewhere that, people, and therapy, that I went there... and I do remember it, the length of time that I spent in a coma. I think that’s important at the doctor’s appointment, all kinds of applications, and everything I need to fill out. And all kinds of questions you’ve got to answer... So, I’d like to give them a correct answer. Also, so I won’t feel like a dunce, not like being around it. In Chapter 4, I wrote that people with TBI remembered factual information related to their accidents and rehabilitation because it had personal significance for them. Norm’s remark revealed that they could also keep that information to present themselves as “normal” persons. There may be a presupposition in society that a “normal” person should have knowledge about the critical events in the past that seem to influence him or her. Many individuals with TBI, therefore, attempt to remember their self-histories so that the personal information is available any time. Strategic presentation of functional changes. An individual with TBI may not only show one’s “normal” aspects but also let other people know one’s functional changes. Some informants emphasized that their changes did not affect the crucial part of the tasks assigned to them. For instance, Ms. Turner, who was a systems engineer, divided her ability into the “deep” level and the “surface” level (personal communication, September 30, 1994). The former was necessary in conducting the essential tasks for her job, whereas the latter was related to just secretarial part of the work, such as keeping the files or making an appointment. She tried to make the surface level less conspicuous because she believed it more affected by her TBI. She worked alone with the door closed or at night when few other workers remained in the building. In addition, she requested her boss to evaluate her not by the process of performing the job, which was more involved with the surface level, but by the final product, which reflected the
193 Labeled Self deep level. Thus, she revealed her functional changes to her boss while dissociating them from the essential part or core of herself. Individuals may get assistance for their functional changes more easily when they define these changes as irrelevant to the main tasks of their jobs. For instance, Ms. Ford, managed to do her job as a college instructor with the help of her students. She always told them that what they wanted was certainly here in her knowledge although there were some barriers for them to break. She wrote; I was fortunate enough to be able to tell my class that I had a problem with my short term memory, dyslexia and attention deficit and they were extremely supportive and helpful. I explained to them that I had all the answers for them but I needed their help to get them out. (...) I found that being quite honest with my group they were receptive and understanding. (Personal communication, September 30, 1994) She thus let her students share her functional change so that they could get the maximum benefit from the class. People with TBI can be virtually “normal” for certain roles when they get some assistance from other people. They would not lose face if they and others agree that the assistance is provided only for non-essential parts of the roles. Modifying the meaning of “normality.” Every individual with TBI cannot present oneself successfully to be viewed as “normal.” When the individual senses that he or she comes short of the range of “normality,” the individual may extend its meaning or focus on another aspect of it to regain the status of normality. Ben, for instance, sometimes remarked that he wanted to be normal, and this remark suggested that he did not feel himself normal. When he redefined the concept, however, he could believe in his normality. He told me that he was normal because he did recently “eat normally and go to the bathroom normally,” namely, “did the same
194 Labeled Self way of everyone else does.” This definition of normality had nothing to do with his functional status or employment status, but it was more related to his activities of daily living. It seems that he shifted his focus of attention in thinking about his normality. Other people with TBI may oppose more explicitly the definition of “normality” that society provides. Some informants attempted to modify the meaning of the word so that they could be called by the same word. Fred, for instance, believed that society rejected him while judging him not to be “normal,” but that the judgment of “normality” was purely subjective. He said; I have to be who I am. That’s normal to me. Sure. OK, I had a head injury. OK, I don’t have a leg. I wake up in the middle of the night. I don’t just get up and go to the bathroom. That’s normal for me. But people and society don’t see that as me. They are normal to them. Maybe I don’t think they are. Normal is what you believe. I believe I’m normal. A similar opinion was seen in Don’s narrative in which he talked about the concept of “intelligence.” He stated, “Everybody, in their own way, is very intelligent. Alice [his girl friend who had TBI] is very intelligent. Alice knows big words.” It seems that both Fred and Don tried to moderate the strict definitions of the words like “normal” and “intelligent” so that these words were not used for the purpose of discrimination. Utilization of the Term “TBI” Individuals with TBI may be willing to accept the term “TBI,” or “traumatic brain injury,” to describe themselves. I discussed in the first half of this chapter that this term could carry negative meanings and attach unfavorable images to them. However, the term still seems to provide some benefits for individuals with TBI while specifying the cause of their functional
195 Labeled Self changes. Some attend to the word “brain” in that term, and some note the words of “traumatic” and “injury.” By stressing these components of the term TBI, they try to distinguish themselves from other disabled populations and present themselves as comparable to able-bodied people. Professionals casually use the term “TBI,” assuming that it has a self-evident meaning. However, it can also serve as a rhetorical tool for people with TBI in various contexts. Stressing the word “brain.” Currently, more and more people use the term “TBI” instead of other terms like “head injury,” emphasizing the fact that the injury is on the brain. The consumer group in the United States for individuals with TBI and their families renamed itself in 1995 from the “National Head Injury Foundation” to the “Brain Injury Association.” According to its president, the group attempted to clarify the target of their services by using the term “brain injury” (Zitnay, 1995). Some of the informants, too, certainly preferred the term “brain injury” to “head injury” because the former sounded more accurate. They did not want others to confuse their brain injuries with an injury on the surface of the head. Some people with brain injuries seem to associate themselves with the TBI population through the word “brain.” For example, Mr. Carr pointed out that the term “head injury” might exclude many people with brain injuries from the TBI population. When the TBI Support List on the Internet had a discussion of the terminology, he wrote, My brain injury was caused by exposure to toxic chemicals. It certainly is not a head injury. Even though it didn’t occur in a matter of seconds (probably days or months or longer), the neuropsych deficits are generally identical. I VOTE FOR BRAIN INJURY [the emphasis is his]. (Personal communication, October 6, 1994) Mr. Carr might lose a sense of connection to other people with TBI if the word “traumatic” strictly means being caused by an external physical force. Other members on the List who
196 Labeled Self sustained brain tumors or strokes expressed similar opinions. They might maintain a feeling of inclusion in the group of other survivors by stressing the word “brain.” Also, the concept of TBI, or an explanation involving the brain may be helpful in getting rid of the label of “crazy” or “stupid.” For instance, Norm, who did not want other people to consider him to be “a dunce,” preferred the term TBI to other terms. He said that, when people knew his brain was injured, they would “take it easy” and understand “why I was slow doing this, did that wrong.” Also, Don believed that his overt behavior made other people regard him as “crazy.” This misunderstanding, according to him, would be cleared if they knew “what’s going on in my head.” When the person’s apparently strange behavior is attributed to the brain pathology, its mysterious nature may dilute or even disappear. For people whose brain injuries are not recognized by professionals, the concept of TBI is a sign of freeing them from unstable conditions. Richard was one of the informants who could not get a diagnosis of TBI for a long time. As I described above, he stated that professionals alleged him to be a malingerer. He once remarked, I bounced my head off a concrete floor! And a year later I bounced my head off a piece of steel in my car! And both are hard enough to, to, to break things and to knock me unconscious. And they mean to tell me the... the soft tissue inside of the skull wasn’t injured? I don’t think so! How was I able to, to talk about symptoms that, at the time of my injury, nobody even know the symptoms, even if I wanted to fake it. Richard recently obtained a proof of brain injury when the blood flow of his brain was examined by a SPECT (Single Photon Emission Computer Tomography) scanner. Its result showed that a certain area of his brain had a lowered level of activity in comparison to other areas. He was
197 Labeled Self happy to be able to convince the professionals of his brain injury. Thus, the concept of brain injury associated with his experiential change helped him to clear his name. Stressing the words “traumatic” and “injury.” Individuals with TBI also emphasize the component of “traumatic” or “injury” out of the term “TBI.” The word “traumatic” ordinarily meant “being caused by an external physical force,” but some informants used it to communicate their situations more accurately with other people. In the discussion on the terminology that I mentioned above, for instance, Ms. Turner wrote, I like traumatic brain injury because of the inclusion of the term traumatic. I think the general public has some understanding of what trauma means. They can recognize the implied suddenness, the effect of trauma on emotions and “world view.” They hear news reporters talking about the aftermath of trauma. They have heard of post traumatic stress, etc. To me the term gives more of an idea of the injury being to the whole person rather than “just” to the head in the way that a leg injury is an injury to the leg. (Personal communication, October 5, 1994) It seems that she expected others to understand the pervasive effects of brain injury by using the word “traumatic.” For some people with TBI, whereas the word “brain” specifies the cause of their changes, “traumatic” can imply the range and seriousness of the changes. Other people with TBI may call the attention to the word “injury” in order to distinguish themselves from different disabled populations again. While stressing that word, some informants emphasized that TBI was not a congenital disorder caused by an elusive, biological mechanism. Richard, for example, noted that his TBI was an “injury” resulted from an external physical force. As I described earlier, he had some concern that people with TBI might be confused with individuals with mental illness or retardation. He repeated this theme when we
198 Labeled Self talked about the terminology. He stated, “It’s a good thing to... if you’re classified as an injury. (...) I would rather be head-injured than crazy. You know, I mean, that’s a better explanation.” In stressing the word “injury,” it seems that people with TBI become more like individuals with physical disabilities. In addition, the same word may more tightly connect the individual with TBI to ordinary people who do not have TBI. Some informants considered that, because TBI was an injury that resulted from many types of accidents, anyone could have the same experiences as they did. Fred, for instance, told me, “I did not sustain brain injury because I liked it. I want people to understand that anybody can be like this. If they go out on such a snowy day as today, they may be hit by a car.” With this view, it would be only chance that distinguished people with and without TBI. He was innocent of his functional changes, which were pressed by an outside force beyond his intention. Sam also referred to the same theme in his self-narrative. He felt uncomfortable in seeing somebody else equate the Alcoholics Anonymous and the TBI support group. He said that people with alcoholism had some responsibility for their conditions, whereas TBI survivors did not. Thus, the word “injury” can be also a sign that shows the innocence of individuals with TBI as well as their commonality with ordinary, “good natured” folk. Distinction of the Self from TBI As mentioned in the first half of this chapter, the term TBI carries negative meanings. People with TBI may try to manage these meanings when they accept and utilize the concept of TBI. Some of the informants made accounts that suggested the distance between themselves and TBI while emphasizing that their TBI was not related to the important part of the self. Some other informants seemed to feel that the strategy of distancing was not enough. They made it a rule not to use the term TBI in presenting themselves to others. No matter which strategy the
199 Labeled Self individual might take, he or she wanted to show the intact self in spite of the TBI. People with TBI try to avoid the negative meanings of TBI by using such rhetoric. Distancing from the concept of TBI. When people with TBI accept “TBI” as a term that describes their characteristics, they are likely to dissociate it from the essential part of themselves. Some may compare their brain injuries with other physical injuries while focusing on its biological or physiological aspect. For instance, Ed said, “I know I’ve been brain-injured. That doesn’t bother me. Uhm... no. I... Hey, if you got a broken leg, you are not going to feel bad you had a broken leg, right?” Sam also took an example of a physical injury to describe his recovery process from brain injury. According to him, the brain injury had been his focus of concern for a while, but that was the same as the situation in which one became injured on one’s hand or foot. It is true that a brain injury is a type of physical injury in that the brain is one organ of the body. People with TBI may believe that their TBI is comparable with an ordinary bodily injury. With this belief, they are independent viewers of the injury who are not influenced by it. Also, some people with TBI suggest that their brain injuries exist outside more important aspects of the self. They believe that, although the brain injury does affect their functioning, it does not control the self completely. For instance, Ms. Turner distinguished herself from her brain when stating what she could trust; I feel I can no longer trust my brain. (...) I have tried to be careful to say that I have lost trust in my memory rather than I have lost trust in myself, because I am more than my memory. I still trust my logic. I still trust my ethical decisions. I still trust my goodness. I don’t trust my memory. I still trust my ability to be there for my friends. I still trust my determination to meet my commitments. I still trust that I care for myself and do the best I can. (Personal communication, September 15, 1994)
200 Labeled Self She secured the trustful self by confining her brain injury in the limited part of her self-image. It is considered that an individual with ordinary physical disability shifts the value from one’s appearance to one’s internal characteristics like intelligence (Dembo et al. 1956/1975; Wright, 1983). People with TBI may need more sophisticated eyes to see their “internal characteristics.” Thus, they make more detailed classifications to locate the trustful self in their intact parts. Replacing the term. Some individuals with TBI may not like the term “TBI,” believing that it connotes the absolute difference between people with and without TBI. Some of the informants attempted to replace this term with another one so that they could be freed from that negative connotation. For instance, Fred felt unpleasant in using the term “TBI” to refer to himself. He clearly stated, “Don’t tell me I had TBI because I refuse to acknowledge TBI. I consider that’s just a label.” This remark does not mean that he “denied” his TBI symptoms. He would say “I have a TBI,” to introduce himself to people like me who were interested in his brain injury. He usually did not mention the term, however, because he believed that it made others feel as if they had understood everything about him. In other words, the term would “stop people from getting to know” him while attaching a stigma to him. He preferred the term “head injury” and explained his reason like this; Head injury... what is it? I’m sure you had a head injury. I’m sure somewhere in your life, you bumped your head against something. Everybody falls down and bumps their heads. They have a head injury. They had a head injury in their life. What, what extent was it? Who knows? Give me the same chance. I have a head injury. I had a little more hurt, head injury than you have when you fell down and injured. But still have a head injury, the same as you.
201 Labeled Self Fred considered that the term “head injury” did not separate him from other people because anyone could have a “head injury,” which included a small scratch on the head. Although the TBI community more commonly uses the term “brain injury” than “head injury” these days, the latter can still benefit some people as a strategy for their self-presentations. Other individuals with TBI who believe that “head injury” also has the same negative connotation as “TBI” may propose another word to characterize themselves or their situations. For instance, Don liked to employ the word “problem” when he had to talk about his functional change. He stated, “I just have problems. It’s better than saying he’s got head injury or has disability or he’s not right in the head, or whatever. (...) Everybody in the world has problems, so.” Don and Fred seemed to have a similar goal even though their terminology was different. Thus, they wanted to stress the commonality between individuals with TBI and people in general, trying to reject the notion that people with TBI are a qualitatively different population. For some people with TBI, substituting another word for TBI is an important strategy to secure the image of intact self for their self-presentations. Development of the Sense of Being Accepted Individuals with TBI may not directly present the images of themselves that they have constructed because they know that everyone does not accept their self-presentations. It seems that some of the informants already gave up expecting everyone to understand their own selfimages. Don, for example, said that he did not care about being called “crazy” by his neighbors because “Everyone has an opinion.” Ms. Clark also wrote that she had “a philosophy of sharing my true self only with those people who do understand, or who want to try” (personal communication, July 19, 1995). In order to realize this philosophy, she would have to find people who could understand her self-images. The individual with TBI may try to find such
202 Labeled Self people around him or her, who include other people with TBI, people with other disabilities, family members, and even God. It seems that, when the individual feels that others acknowledge and accept his or her self-image, he or she can accept the self more. Gergen (1994) suggested that one’s sense of identity was maintained by narratives about relationship with others. This may be true of individuals with TBI as well. Finding the “audience.” The individual with TBI may find a group of others who he or she feels understand or accept him or her. The TBI support group and the TBI Support List on the Internet are among these groups. Sam, for example, considered that the support group provided an opportunity for participants with TBI to present themselves in a supportive atmosphere. In other words, participants could exchange their self-images without being neglected or rejected in the meeting. Sam stated, Talk to others... cannot feel so sorry for yourself... see others their coping with it, too... talk during the meeting, you know... I think it’s beneficial. (...) The most important thing is to support and talking, mostly about what they are doing, because they may not have such an opportunity to talk about their interest in life and listen to others people talk about what they are doing. Similarly, Mr. Bennett wrote about the TBI Support List, “It does help to ‘talk’ / type to others who have been through the same mess” (personal communication, June 9, 1995). Mr. Lewis, another TBI survivor on that list, also mentioned, “These letters let me understand that I am not alone” (personal communication, April 25, 1995). Each of them sensed that other people with TBI in the group had similar experiences, which enabled the group to understand him. He also felt that his experiences, in turn, helped him to understand other members’ letters. The belief in
203 Labeled Self the commonality of experience seemed to make people in the group a good “audience” for each member’s self-presentation. It is possible that the individual with TBI finds an audience among neighbors in the community as well. Whereas the individual is likely to want to share the TBI experience with others at the TBI support group, one may present a different self-image to neighbors. Ben, for instance, considered that he was accepted by people in the community as a friendly and sociable person. I often observed him go out and stay at coffee shops or fast food restaurants where he spoke to waiters, waitresses, and other customers. It seemed that he knew many people there. I also saw him waving his hands to his apartment building. He stated later that he had done it for fear that somebody should see him through one of the windows. Thus, he was always careful in maintaining his image as a friendly person. He said in the interview, I like all kinds of people. I like working people, I like non-working people. You saw this morning how I kind of knew quite a few people at the coffee shop. I like that. (...) That’s one positive aspect of not drinking. That helped. Myself, stopping drinking made me a more friendly person, and more... made me, made people want to associate with me more than before. In the interaction with community people, he believed that they accepted his self-definition. Unlike the self-images exchanged in the TBI support group, however, the self that Ben presented to the community people had nothing to do with his TBI. The individual with TBI may not be satisfied with the acceptance by other TBI survivors in the support group or by community people at coffee shops. They accept his or her selfpresentation, but the presented image represents only one aspect of the self. For instance, Ben distinguished his relationship with the community people from the one he really wished to build.
204 Labeled Self He stated that the community people that he casually interacted with were “associates” to whom he said just “hi” or “bye.” They were different from “friends,” namely, “someone you’re kind of close to, you have the same likes or dislikes.” Sam also mentioned that most participants of the support group were “a kind of friends” but not really “friends,” because he saw them only in the group meetings. The acceptance by a special group of people is good, but people with TBI may need other “audiences” that accept them more fully. Accepted as a whole person. The individual with TBI may want to have an “audience” that understands him or her as a whole person. Some informants found that their family members did regard them not just as TBI survivors but as persons that had certain roles in the families. Karen, for instance, felt that her family accepted her as its member regardless of her TBI. Her brothers and sisters did some activities with her, such as cooking or shopping. That was, according to her, “Not because I’m head-injured, but because I’m their sister.” A similar comment was found in Ed’s narrative as well. He said, I knew that people [in my family] needed me to get better. Not really, you know, financially, because they could have made it if I was 100% disabled; I couldn’t work. But they still need me... because they cared so much for me. (...) You know, I’d been a good father, a good husband, and hum... I, I... had been able to help them a lot. He believed that his family still mentally relied on him as an important family member that could not be substituted. It seems that he was certain of his family’s acceptance of him all the more because he knew he had been loving them and caring for them. A person may more easily feel others accept him or her when the relationship between the person and them is not one-sided but mutual.
205 Labeled Self Some informants found partners after TBI, who accepted them as significant others. The sense of mutuality seemed to be critical in these one-to-one relations as well. Don, for instance, had been with Alice for five years. Alice was a woman in her twenty’s, who had sustained a severe TBI in a motor vehicle accident twelve years before. She still needed some supervision outside her home because she would easily get lost and confused when she left alone. I frequently saw her telling Don that she loved him, and he sensed that he was loved and needed by her as a person. He also needed her because, he said, “I am lost without her. I don’t know what to do.” Fred also had a female partner, Lorrie, who was a graduate student majoring in social work. After five years’ relationship, he said, “She knows me better than I know me.” They trusted each other, such that he depended on her in watching his budget. She, in turn, asked advice of him in finding a job. Even though Fred did not use the word like “acceptance,” he felt that she needed him as a partner. In these ways, people with TBI can believe themselves to be needed by someone else, not just as a function but as a whole person. It seems that they are relieved from the labels like “TBI” or “disabled” in those relationships. Every individual with TBI cannot find people who really respect his of her self-image presented to them. However, the individual might still have God, who accepts and supports his or her self-presentation. Some informants believed that their worth and value were given by God, irrespective of their functional changes or appearances. For instance, Mr. King considered that human beings were all “children of God,” whether they had brain injuries or not. He stated, “We all deserve peace of mind and to be treated with dignity and respect at all times” (personal communication, June 3, 1995). Thus, his self-presentation as a person was always acknowledged by God. Ed also reported that he had become more religious after his accident. According to him, he was supported by God as well as his family. He said,
206 Labeled Self My guardian angel, that I learned, has been watching over my shoulder since I was born. My lord, our lord, I can say... uhm, God, let me live for a reason. For what? I don’t know. (...) I don’t go to Mass, like I should. But instead of going to Mass, I sit down under a tree, a stump, in the middle of the woods, and I say, “Hey, I’m on a familiar basis, woods there, Lord.” I just say, “Hey God, thanks a lot.” He believed that God accepted his life as it was while backing him all the time. He did not have to develop a mutual relationship here. It seems that this belief certainly made his life easier in spite of his functional changes. Concluding Remarks In this chapter, I first described how society defines or gives special meanings to people with TBI (see Figure 1). All of us constantly exchange each other’s definition in interaction and develop our own self-definitions. However, the definitions or labels given to the individual with TBI seem to be so powerful that he or she cannot reject them easily. I showed in Figure 2 that people with TBI feel that society shifts their images in certain directions. Thus, the images are pulled to the area of “More Pathological” while sometimes digressing to the “Less Medical” area. In the second half of this chapter, I discussed how people with TBI deal with the shift of their images. The strategies used by them are varied and sometimes look contradictory. For instance, some reject the term TBI, whereas some accept it. When examining needs and desires behind those strategies, however, we can understand that the destination where the people intend to go is quite similar. They present themselves as those who have TBI in order to obtain proper interventions, accommodations, and various benefits. At the same time, they want society to
207 Labeled Self believe that they can somehow objectify their TBI and retain the self that is common to people in general. In Figure 1 or 2, they attempt to create an upward vector and a vector to the left. At the destination of these vectors, individuals with TBI seem to develop a certain selfimage that they want to present. Thus, they may define themselves as different from people without TBI, but the difference is exclusively on the dimension of “More Medical - Less Medical,” not on the dimension of “More Pathological - Less Pathological.” They can benefit from the medical difference even though they have to play a “sick role.” On the other hand, the pathological difference seems to give nothing beneficial to their lives but just destroy their relationships with others. Goffman (1967) postulated that respecting each other’s “face,” or a positive self-image, is an essential principle of social interactions. When the individual with TBI is defined as different on the pathological dimension, this definition may threaten his or her face as well as interaction with others.
208 Implications
Chapter 8
DISCUSSION AND IMPLICATIONS
The findings of this study presented from Chapter 3 to 7 have several implications for the theory and practice of rehabilitation services for people with TBI. In this final chapter, first, I will discuss two concepts that appear frequently in the self-narratives of TBI survivors: “self” and “brain.” It seems that these are key words for understanding the experiences of this population. Each of them is not a thing or entity that everyone can perceive objectively. Rather, they manifest themselves to an individual with TBI as meanings when he or she interacts with the environment, other people, and him or herself. This study has referred to “self” and “brain” in the forms of “loss of self” and “brain injury.” In order to deepen the understanding of the unique perspectives of people with TBI, I will clarify the meanings of these two notions in the first two sections of this chapter. Based on this theoretical discussion, the final section will provide practical implications of this research and recommendations for TBI rehabilitation. This study was undertaken mainly to understand the experiences of people with TBI, but the findings also suggest some possible intervention strategies for rehabilitation professionals. The Notion of “Loss of Self” In the first part of this chapter, I would like to focus on the notion of “loss of self.” The previous four chapters illustrated four aspects of loss of self that appeared in the self-narratives
209 Implications of the informants: Loss of single self-history, the opaque self, the devalued self, and the labeled self. I will further elaborate the notion of loss of self by presenting hypothetical relations among these four categories and common characteristics behind them. Then I will refer to the literature to make certain that some of my findings can apply to other populations, such as people with other acquired disabilities and chronic illnesses. The Internal Structure of Loss of Self I have discussed four categories of loss of self in separate chapters, but this does not mean that people with TBI always experience these four categories separately. These categories are actually related to one another, representing the aspects of self that appear in interaction. Particularly, the last three categories roughly correspond to three aspects of interaction. Thus, the opaque self involves the interaction with the physical environment. The devalued self and the labeled self involve the interaction within the self and between the self and others respectively. Simultaneously, these categories seem to share common characteristics that allow us to categorize loss-of-self experiences with one term. The experience of loss of self involves not only the person’s social interactions but also one’s senses of identity, possibility, and time. Relationship among the categories. The four categories of loss of self are not on the same plane. The first category, namely the loss of single self-history, seems to provide a background for other categories of loss of self. Neisser (1988) postulated that memory of the past life was one of the major sources of self-knowledge. Thus, an individual understands oneself, based on the memory of how one has lived and what one has been so far. The person’s selfhistory, which is a narrative in itself, prepares the context in making smaller self-narratives that he or she produces day by day (Gergen, 1994). In other words, the self-history is a “ground” against which the individual makes sense of a present situation as a “figure.” One will find it
210 Implications difficult to construct a stable “figure” if one does not have a consistent “ground.” This is like an experience of viewing Rubin’s ambiguous figure or some of Escher’s etchings. You cannot see a stable figure in these pictures because the ground allows two or more interpretations. Similarly, loss of single self-history may make it difficult for the person to understand the present selfimage consistently. Loss of single self-history constantly influences the person’s understanding of a current situation and, as a result, one’s experiences of other aspects of loss of self. It may not appear explicitly in his or her self-narrative about present experiences, but it maintains a strong tie with every loss-of-self experience. One type of the narratives about self-history, which I mentioned as “Permanent interruption of the self-history,” provides an idea that the person is not what he or she used to be. This idea is a direct basis for the devalued self because the devalued self is experienced when the person has two different self-images. Also, in order to experience the opaque self, the person must have some knowledge that the self used to be less opaque. This knowledge chiefly comes from the narrative about the pre-injury self, which is related to the other type of self-history, “Temporary interruption of the self history.” This narrative suggests that the person is the same in spite of the injury. Also, the labeled self becomes a problem because one believes that the label does not reflect the unchanged part of the self. The three categories of loss of self other than loss of single self-history are not independent of each other. For one thing, the opaque self becomes real in the individual’s experience when one considers that opacity is not “normal” to him or her. The individual may explicitly oppose the present, opaque self with the previous, less opaque self while devaluing the former. The opaque self is, thus, linked to the devalued self. For another, the experience of the labeled self is intensified by the sense of the opaque self. An individual who experiences the
211 Implications opaque self may not be able to argue back with confidence when others press an unfavorable label upon him or her. As I described in some examples in Chapter 5, the individual may be afraid that others have clearer knowledge about him or her. Furthermore, the individual can “translate” the experience of the labeled self into one part of the devalued self. He or she may make comparisons between the present self with many negative labels and the pre-injury self without them while devaluing the former. TBI survivors experience loss of self in various combinations of these three categories. They may report it while stressing only one of its categories, but the other categories can be behind their reports. Common features of loss of self. Despite the multiplicity of loss of self, there should be some features that are common to all the categories. One of the features is a condition in which the individual cannot find a single “sign” to represent and communicate him or herself. As I mentioned in Chapter 2, symbolic interactionists have assumed that the self is a sign that is created in interaction. Schwalbe (1993) emphasized recently that the self that appeared in the self-presentation activity was not an entity but a sign of the self that had a meaning behind it. People with TBI experience loss of self when they miss a sign that is communicable to themselves and/or to society. In the opaque self, thus, they cannot find a “correct” sign to be presented to themselves when they confront the environment. In the devalued self, they find two different signs when they try to characterize themselves. Also, in the labeled self, they face two different signs again, which are ordinarily from themselves and from others. Losing a single sign for the self accompanies the crisis of identity. Stone (1981) defined identity as being situated in a social space. Thus, a person announces an identity that he or she believes is appropriate to the situation, such as the role of a customer in a restaurant. If other people, such as waitresses, acknowledge that identity and treat the person as such, the person can
212 Implications secure that identity, being situated in that social space. People with TBI, however, sometimes experience difficulties in having such a situated identity. They may be afraid that they are unable to announce an appropriate identity. When the individual feels him or herself to be too hasty to develop an intimate relationship, for example, he or she is unsure whether the identity that is announced is appropriate. Also, people with TBI may not receive acknowledgment from others even though they present their identities in certain situations. A typical example can be found in the experiences of people with “MTBI.” Hewitt (1997) distinguishes social identity from personal identity. Social identity can be obtained through the sense of belongingness to a certain group or through the sense of similarity to the group’s members. Many individuals with TBI have lost their jobs and other social connections with people, so that they experience more difficulty in identifying themselves with a group of people than before. Moreover, due to the change in long-term memory, they may have lost their knowledge through which they get a sense of link to the group. Personal identity means the sense of identity based on one’s individual characteristics that differentiate him or her from other people. The person can get that sense when pursuing one’s own goal by his or her agency. When individuals with TBI are not confident in their agency to achieve their goals, they have fewer opportunities to sense their personal identities. They may also feel that other people are too easily influenced by labels such as TBI and do not understand their individuality. Thus, people with TBI are thrown into categories and lose their personal identities as well. On the other hand, when the individual cannot find a single sign of self, one may lose the basic sense of future because the future is incorporated into the self as a sign. Wiley’s (1995) model of the “semiotic self” may provide insight regarding this point. According to this model, the human self consists of a trialogue of the “I - me - you,” rather than a dialogue of “I - me.” In
213 Implications Chapter 2, I described that Mead (1934) distinguished the “I” from the “Me”; the “Me” is the self defined by society, and the “I” is the self that spontaneously responds to the “Me.” Wiley added the concept of “you,” or the “interpretant,” to this dialogical process while referring to C. S. Peirce’s semiotic theory. The “you” is another object of the “I” and represents the self in the immediate future, in contrast to the past self that is represented by the “Me.” In other words, Wiley divided Mead’s I into the two interpretative processes of understanding the past (the “Me”) and of intending the future (the you). The author wrote that these two processes were mutually dependent, and so one process would not work well if the other had a problem. Thus, when one cannot construct the single, consistent self based on the past, it is difficult to “read” the future self from it. Whereas Wiley’s concept of “you” represents the immediate future, loss of self may affect the self-image in the more distant future. Markus & Nurius (1986) developed the concept of “possible self” and discussed how it is created within the present self. They postulated that one’s possible self-images in the future were constructed from the present self-schema, which they called a “working self-concept.” This self-schema is not so much a stable, consistent structure as a fluid, temporary hypothesis that is influenced and evaluated by the future self. Thus, the present self and the future, possible self support each other. My research suggested that loss of self of people with TBI involved difficulty in constructing a single, consistent self-image in the present interaction. This difficulty will extend to the construction of future self and one cannot “read” any future image from the present, unstable self-image. I mentioned the concept of opaque future when I described the category of opaque self. However, that concept seems to be more radical and related to all types of loss of self, not just to the opaque self.
214 Implications It may be possible to redefine loss of self by relating it to the notion of time. Faulconer and Williams (1985), while referring to M. Heidegger’s thought, postulated that the essence of human existence was “temporality.” According to them, a person does not live in such “objective” time as anyone can measure with a clock. A person lives, instead, between the past as the “from whence” and the future as the “to whence,” both of which appear at present in one’s consciousness. Temporality means this nature of human existence that lives in subjective time. Loss of self seems to involve the partial frustration of temporal nature of self, no matter how it may manifest itself. Thus, it means the difficulty in constructing an image of the self that operates in the future, whether it does through the interaction with things or with people and society. Loss of Self in the Literature on Brain Injury The findings of this research are consistent with previous qualitative studies, although primary interest of each study was different. Some studies on the experience of people with TBI reported in their findings that the self was a main concern for this population (Bergland & Thomas, 1991; Crisp, 1994; Karpman et al., 1986; Krefting, 1990). In other studies on similar populations like stroke survivors, as well, researchers pointed out that self was a critical notion to understand the research participants’ life experiences after brain damage (Becker, 1993; Doolittle, 1991; Kaufman, 1988). Their findings sometimes included categories and concepts that are different from those which I presented above. However, these unique categories and concepts do not contradict my research findings. This uniqueness comes from specific characteristics of the research participants, such as their age and the length of time after sustaining brain injury. The comparison with the literature will detail conditions under which the person experiences each category of loss of self.
215 Implications Other TBI survivors. Loss of self reported in the literature can be viewed through the four categories found in my research. For example, Karpman et al. (1986) explored the experiences of ten young adults who sustained TBI between 17 and 24 years old. They abstracted 15 concepts about their coping and adjustment issues after TBI, such as “memory loss,” “lack of awareness,” and “hope and optimism.” Even though the authors did not explicitly associate these concepts with self or loss of self, the concepts were rather similar to the ones under either of the four loss-of-self categories. Bergland & Thomas (1991) also interviewed 12 adolescents and their parents about the topics of self, family, friends, school, and work. The concepts identified about the topic of self were “different person,” “physical, cognitive, emotional, and behavioral change,” “loss of ability,” “self-esteem,” and “social relationship.” These are, again, the same as the concepts that I discovered. Unlike my research, the adolescent informants more often mentioned relationships with parents and friends in school as the source of their concerns. This difference seems to be related to the age of the informants. Some other studies discovered specific categories to classify the concepts that appeared in TBI surviors’ self-narratives from TBI survivors, but their findings did not disagree with this study. Krefting (1990) applied the idea of “double bind” to the descriptive data chiefly from 21 people with TBI and their families. She wrote that people with TBI were likely to get a contradictory message from others, which put them at a loss how to respond to it. For instance, they felt that help and guidance provided by the care-giver could convey a message that they did not need to get better, as well as another message that they were loved. This is similar to the conflict between two or more self-images in the social process, which I described in the chapter on the labeled self. Krefting seems to have further elaborated upon the manifestation of this conflict.
216 Implications Crisp (1994) classified people with TBI, based on their perspectives on the meaning of their lives. He interviewed 10 informants with TBI and discussed with them topics like postinjury changes, self, interpersonal relationships, and social activities. The data illustrated that the extent to which they attached a meaning to their lives varied with the individual. Thus, the author classified the informants into the “entrenched,” “strugglers,” “strivers,” and “optimizers.” As I mentioned in Chapter 6, my informants attached positive or negative meanings to their life experiences before and after sustaining TBI. Crisp’s classification represents another viewpoint through which to view the experiences of people with TBI described in my research. Stroke survivors. Some qualitative studies were concerned with experiences of stroke survivors. Like TBI, a stroke, or a cerebral vascular accident, causes damage on the brain. Its sequela also depends upon the location and size of the affected area (L. Miller, 1993). Doolittle (1991) conducted a longitudinal study of thirteen stroke survivors, from three days to six months after the onset. The interview data revealed several concepts, including “stroke as a bodily experience,” “meaning of hospitalization,” “differing medical and personal views,” and “living with uncertainty.” The informants mentioned the senses of loss of self that were covered by my research, such as changed body images and compared self with the one before brain damage. Their special attention to the functional changes and close environment rather than to societal conditions also corresponds to what I described in the section of “loss of single self-history.” People with TBI who are in the earlier stages of their recovery seem to experience loss of self in such forms as Doolittle found. Although people with TBI do not have the fear of relapse that her informants felt, they share with stroke survivors many experiences of physical or cognitive changes and hospitalization.
217 Implications Becker (1993) and Kaufman (1988) conducted a study with stroke survivors in the chronic stages. Kaufman (1988) examined life stories from two survivors and showed that there were two different meanings of recovery from stroke. One type is concerned with restoring the ability of personal care at home, and the other type is with resuming an independent life. The first one did not appear as a major concept in my study. But that is natural considering that most of my informants had already achieved functional independence enough to resume their community lives. The meaning of recovery like the first type may be found as a major theme among people with more severe TBI or in the early stages of recovery. Also, Becker (1993) examined qualitative data from semi-structured interviews with 100 stroke survivors. The finding suggested that they experienced stroke as a sign of discontinuity of their lives and that they were likely to attempt to regain the sense of continuity. This was basically true of the informants of my study as well. It should be noted, however, that some of my informants intentionally dissociated themselves from the past to attach meaning to the present. Because TBI is more common among younger generations (Kraus & Sorenson, 1994; L. Miller, 1993), TBI survivors’ perspectives on their lives may be more present-oriented than stroke survivors’. Loss of Self Among Other Populations The experience of loss of self is also reported in qualitative research on other populations, such as people with acquired disabilities and chronic illnesses. In this section, I would like to compare the findings of my research with the experiences of these populations reported in the literature. This comparison will reveal the similarities and differences between these populations and people with TBI. It will also show the relationship of loss-of-self experiences with the individual’s characteristics. Simply stated, the theme of opaque self is often found among people whose disabling conditions are related to psychological changes. The theme of devalued self is
218 Implications more conspicuous when the onset of the disabling condition occurs suddenly. Also, the theme of labeled self seems to appear as the person interacts with society. People with physical disabilities and chronic illnesses. People who acquired physical disabilities because of an accident or an illness are likely to go through the experience of loss of self that is comparable to the “devalued self” in my study. It is known that they confront changes in their self-images and life situations while devaluing themselves after the onset of disability (Dembo et al., 1956/1975; Wright, 1983). The process through which they adjust to the changes, or coping with the devalued self, has been formulated in a stage model. Livneh (1986), for instance, reviewed more than 40 extant models and built an extensive theory of the adjustment process, which started with the initial shock and culminated in the acceptance. However, stage models have many limitations. They tend to associate the adjustment to disability with inner dynamics of the individual without much consideration of an outside context (Russell, 1981). The stage models of adjustment are still popular in rehabilitation despite their limitations. This popularity suggests that the devalued self is a serious problem that tends to arise when individuals with acquired physical disabilities interact with rehabilitation professionals. Qualitative research on people with physical disabilities has revealed that they also experience the labeled self (Goffman, 1963; Hanks & Poplin, 1981; Kaiser, Freeman, & Wingate, 1985; Luborsky, 1994; Nagler, 1990). For instance, Nagler (1990) conducted interviews with 35 individuals who went through ostomy, a surgical procedure to create an artificial body opening for the elimination of body waste. They were often looked upon as “dirty” or “stinking” by others and had difficulty in finding a job or developing an intimate relationship. Thus, their appearance became a negative sign, or a “stigma,” that made other people discriminate against them. Luborsky (1994) also pointed out that the discrimination was
219 Implications mediated by a dominant, socio-cultural notion that determined what a “normal” person looked like. People with TBI also experience similar discrimination in society. The self-image that they want to present often contradicts the images pressed upon them by the society. This contradiction can be grounded in their appearances, like individuals with physical disabilities, but also on the labels attached to them, such as “TBI.” On the other hand, one can find the theme of “opaque self” less often in the selfnarratives of people with physical disabilities. Murphy (1987) stated, based on his own experience, that people with physical disabilities might feel that their future had become invisible. They might also feel that their possible activities in society had become elusive because they did not know the societal reaction to them. However, they understand relatively well what their physical disabilities are and what they can do and cannot do in their immediate environments. In other words, they can objectify their disabilities and impairment more easily than individuals with TBI. As I described in the chapter on the opaque self, people with TBI may not be able to objectify their TBI-related changes as objects that they can accept. This is why professionals or theorists can discuss adjustment to or acceptance of disability often for the populations with a physical disability. Charmaz’s (1983; 1991) extensive research on the sense of self and time of chronically ill patients provided insights into the experience of loss of self. She interviewed 90 people with chronic illnesses, such as diabetes, lupus erythematosus, and cancer. Her findings include many things in common to my research while introducing useful categories in understanding the experience of loss of self. She defined loss of self as, “being dispossessed of former attributes and sentiments that comprise one’s self concept” (1991, p. 257). This definition may seem to limit the notion of loss of self to what I called the “devalued self” resulting from the alteration of
220 Implications bodily functions. Yet she also indicated that many other experiences involved loss of self. According to her analysis, for instance, people with chronic illnesses are likely to find appearances of their past and future changed, which is a source of loss of self as well. She also pointed out that people with chronic illnesses became vulnerable to negative images held by others. She stated, “With loss of self, earlier boundaries of the self-concept shrink and become permeable” (p. 257). This seems to be a precise characterization of one aspect of the labeled self in my research. Loss of self among chronically ill patients is somewhat different from that of people with TBI. Charmaz (1991) discovered, for example, that their self-images changed as the illness progressed. First, the illness just “interrupted” part of the person’s life, but it comes to “intrude” on his or her life as a whole. The self of the person is, then, “immersed” in the illness. This type of gradual development of loss of self is rarely found among people with TBI because most TBI symptoms do not get worse after the initial symptoms are stabilized. Charmaz also described how people with chronic illnesses separated “the sick or physical self” from “the monitoring self.” This separation is not always possible for people with TBI, however. As I mentioned in Chapter 5, they may not be sure if they objectify their functional changes especially when they believe that their “monitoring self” is affected. People with mental illnesses. The self-concepts of people with psychiatric challenges have been often discussed from the standpoint of the labeling theory (Link, Cullen, Frank, & Wozniak, 1987; Scheff, 1966; Townsend, 1979). In other words, researchers have found the theme of “labeled self” in the experiences of that population. Goffman (1961), for example, conducted participant observation of the activities in a mental hospital and illustrated how the selves of the inmates were oppressed and denied there. According to him, individuals’ self-
221 Implications identity is supported by the belongings that are at their discretion, such as clothes, hair style, hobbies, jobs, and interpersonal relations. Goffman observed the inmates being deprived of such belongings and obliged to replace their self-images with the ones carrying an inferior status to the staff. Even outside such a total institution, individuals with psychiatric challenges experience rejection and discrimination in many social activities, including employment and marriage. The general public is likely to have prejudice against individuals with mental illness, not just because of their behavior but also because of the labels and stereotypical images attached to them (Link, et al., 1987). Some recent research on people with mental illness suggested that they could experience the opaque self as well. Karp (1994), for instance, interviewed 20 individuals who sustained depression and found a similar theme in their self-narratives. According to the author, people with depression go through a “career” before they define themselves as having depression. They tend to have a time in which they feel that something is wrong with them, but they do not know what it is. The self appears opaque to them during this period. Likewise, Schneider and Conrad (1986) seemed to find the experience of the opaque self among people who sustained epilepsy as well. Epilepsy attacks the person all of a sudden from the inside, so one feels oneself carrying an opaque area. Additionally, the experience of epilepsy, as well as depression, makes them feel that their future is unpredictable and opaque. These two populations do not represent all the populations with psychiatric challenges. However, the theme of opaque self can show itself in the experiences of mental illness as well as TBI when the cause of experiential changes cannot be easily located on the body or the environments. On the other hand, the comparison between self-images before and after the onset of the challenge, which is a basis of the “devalued self,” does not appear in these studies. Some
222 Implications researchers may have overlooked that theme because other themes, such as the “labeled self,” were too conspicuous. Some other researchers may not have attended to the theme, believing that people with psychiatric challenges could not objectify their loss. Certainly, a person with serious schizophrenia, for instance, may not be able to view the present and past selves objectively, but this is not the case for the whole population with mental illnesses. Keaney and Glueckauf (1993) pointed out that few theories or models had been formulated about the adjustment to the loss that people with mental illnesses experienced. This may be a focus of research for the future. Self and Brain This section will reconsider the relationship between self and brain. In Chapter 1, I reviewed the common belief that the brain is the biological basis of one’s consciousness, experience, and action as well as one’s sense of self. Depending on this belief, researchers regarded the self of people with brain damage as a dependent variable of the brain pathology. It would follow that loss of self of TBI survivors results from their brain injuries. However, this study suggested that loss of self that people with TBI experience might not be directly caused by their brain injuries. It could be a product of their views of themselves and/or of other people’s views of them. TBI may be the necessary condition for the experience of loss of self, but it is not the sufficient condition. Moreover, TBI changes its meaning while people with TBI, who have certain needs and desires, are tring to understand and present themselves. Rehabilitation professionals should reconsider the relationship between self and brain from TBI survivors’ subjective viewpoints, parenthesizing the ordinary “scientific” view. Meanings of TBI to the Self Researchers have not examined the meaning of TBI that appears in the experiences of people with TBI. Although a few clinicians reported that the individual with TBI interpreted the
223 Implications brain injury sometimes positively and sometimes negatively, but their reports remained anecdotal (Kemp, 1992; Malec, 1992). Even qualitative studies conducted so far did not explicitly mention the meaning of TBI, whereas they often discussed loss of self that people with TBI experienced. Researchers may have been prepossessed with the idea that TBI is the independent variable, assuming that it is an “objective” fact that does not allow further interpretation. However, TBI is not like a virus or a broken bone that one can observe more easily as something irrelevant to the self. People with TBI are likely to interpret their TBI and modify its meanings in their daily lives. One of the original questions of this study was what TBI means to people with TBI when they construct their self-narratives. The finding chapters already answered that question in an implicit way, but I would like to answer it more explicitly here. TBI as a desirable notion. The notion of TBI may facilitate the construction of a positive self-image among people with TBI when they can define it as a biomedical entity in their narratives. As long as it is useful in developing or securing the intact self, people with TBI like to use TBI to explain themselves. This does not mean that the notion of TBI itself comes to look positive. Rather, this notion assists the individual in constructing a positive self-image for him or her “outside” TBI. That self-image has a characteristic of being innocent, accepted, or powerful. In other words, the person with TBI may want to be defined as having TBI in order to change the present situations in which he or she is not considered to be innocent, accepted, or powerful. People with TBI may feel themselves “innocent” or not to be blamed when their experiential changes are associated with brain injury. Some of them use TBI as a reasonable account of their failure or mistakes while conceptualizing TBI like a disease. Thus, they could say that TBI made them do such and such. They are not responsible for it because it is a consequence of TBI, which is like a disease that is uncontrollable to them. This kind of
224 Implications attributional account is common among the general population as well (Hewitt & Stokes, 1975; M. B. Scott & Lyman, 1968). The person may give an account of one’s mistakes while attributing them to uncontrollable conditions. One may also disclaim one’s responsibility for future mistakes by using similar rhetoric in advance. According to Shotter (1984), such accountmaking is an important activity in social interactions. If the account is reasonable and acceptable, the person continues to be accepted in society while maintaining his or her self-esteem. Individuals with TBI may emphasize their brain injuries to distinguish themselves from those who have mental illness or retardation. The latter groups of people have been traditionally devalued in society (e.g., Rubin & Roessler, 1995). Although researchers are beginning to find that mental illness and retardation are caused by brain pathology, society still has many prejudices and negative stereotypes about these populations. The notion of TBI can be useful in drawing a distinction from mental retardation because TBI implies that the change is not congenital but acquired. As a result, people with TBI can understand their conditions more like an ordinary disease. The notion of TBI also allows them to differentiate themselves from mentally ill patients because TBI is an injury to the organism from the outside. It can be imagined as a similitude of a simple physical injury, whereas mental illness is more difficult to imagine in the same way. Because of the notion of TBI, people with TBI can feel themselves more accepted, or at least less rejected, by society in comparison with individuals who sustain mental illness or retardation. The notion of TBI also provides the person with a chance to get some benefits from society. First, when professionals acknowledge that the person sustains TBI, he or she has more possibility to receive medical treatment for its symptoms. This may make the person subordinate to medical professionals who press a “sick role” upon him or her. However, the treatment can
225 Implications create the hope of improvement especially for people with “mild” TBI whose experiential changes are not diagnosed as TBI symptoms. The diagnosis of TBI may also remove from them the image that they are affected as a whole. In other words, it helps them to believe in the intact self that can objectify and face up to a challenge of TBI. Second, when the person is defined as an individual with TBI, he or she may receive Social Security or insurance benefits to pay for living expenses or medical costs. This money may become a disincentive against looking for a job (Krefting, 1990), but it still helps the person to control his or her life. Finally, people with TBI can regain the sense of agency if they succeed in controlling their functional changes by the mechanistic explanation of TBI. The notion of TBI and accompanying neuropsychological explanations specify the unique features of the person’s functional changes. As discussed in Chapter 5, these explanations, as well as the specification of external conditions, may enable the individual to work on the possible causes of one’s difficulties. The individual can believe in one’s capabilities to change the situation and to make things better when he or she successfully controls the difficulties. This experience of selfefficacy helps the person to feel more empowered and to strengthen his or her sense of wellbeing (Bandura, 1994; Snyder, Irving, & Anderson, 1991). Thus, the notion of TBI can be used as a means of securing or restoring the intact self that can control one’s life at present and in the future. TBI as a negative notion. However, people with TBI cannot always stay with that meaning of TBI as a biomedical entity, which is irrelevant to the self. TBI may have a different meaning in their everyday interaction. Attribution theory distinguishes between internal characteristics and external events as the two main factors to which one’s action and its consequences are attributed (Fostering, 1988/1986; Lefcourt, 1983). However, such a simple
226 Implications dichotomy of the internal and the external is not applicable to the brain. It seems that the meaning of the brain is ambiguous in the narratives of people with TBI and drifts on a continuum. One of the extremes on this continuum represents the brain as an ordinary organ in the body, just like a heart or a lung. As I discussed above, TBI does not much affect one’s selfconcept when the meaning of the brain is close to this extreme. The other extreme represents the brain as a special organ that is closely associated with one’s self and mind. The logical extension of this meaning of the brain is that TBI results in a destruction of one’s self and mind. The negative connotation of the notion of TBI becomes maximum at this point. The notion of TBI can be an obstacle when individuals with TBI want to present themselves as having commonality with people in general. The modern society attaches great value to rationality, which is considered to be an essential function of the brain (Ridley, 1989). People in this society may look upon a TBI survivor as a loser of that value especially when he or she sustains a cognitive or behavioral change. Due to the apparent loss of rationality, society may classify TBI survivors into the same group of people with mental illness or retardation. All of these populations, then, are attached to a stigma, which creates an illusion of qualitative difference between them and “normal” people. When people with TBI want to present their individuality and strength to other persons in society, the notion of TBI may have a negative effect again. Wright (1983) pointed out that, if the person has a disabling condition, it often spreads to his or her other characteristics in other people’s impression. For instance, a blind person may be regarded as having difficulty in hearing. This spread effect eventually causes the person to devalue him or herself as a whole. The idea of spread can be applied particularly to individuals with TBI who have physical changes. Remember that one of the informants, for instance, was afraid that others might
227 Implications consider him “childish” because of his uncoordinated hands. Besides, the common negative meaning of TBI that I mentioned above is so powerful that it determines the image of the entire person. This is why some people with TBI who do not have visible disabilities wonder whether or not they should reveal their TBI in social situations. They fear that others might attend only to TBI, overlooking their assets. Self and the Theories of the Brain Whether people with TBI interpret TBI negatively or positively, it seems that their attitude toward their self-concept is rather consistent. They wish to keep or rebuild an intact self while dissociating it from TBI. Neuropsychological views of TBI, which are dominant in TBI rehabilitation, may appear as meanings to this wish. I would like examine here some of the theories of the brain in order to clarify their implications for the self of TBI survivors. There are two theoretical standpoints from which to understand the brain: the localization paradigm and the holistic paradigm. These represent two major approaches to brain dysfunction as well as to TBI rehabilitation. I will also mention the mind-body dualism although it is not influential in rehabilitation practice. These theoretical standpoints are seldom discussed directly with TBI survivors in rehabilitation. When the professional takes either standpoint, however, it can influence his or her view of people with TBI and interaction with them. The localization paradigm. The localization paradigm assumes that the brain is divided into areas each of which has a specific function. Clinicians and researchers became interested in this standpoint when P. Broca discovered one of the language centers of the brain in 1861 (Star, 1989). He found that a patient who had a problem in language expression suffered a lesion on one limited area of the frontal lobe. Before long, C. Wernicke formulated a localization model of language function by compiling evidences from aphasic patients. Geschwind (1965) reviewed
228 Implications the localization theories and explained some other cognitive symptoms found in individuals with brain damage. He postulated that certain areas of the brain control certain behaviors, and that brain damage symptoms result from a direct lesion on these areas or from a disconnection between them. One of the major approaches of neuropsychological rehabilitation reflects this localization paradigm. Trexler (1987) called it the “reductionistic approach.” In this approach, professionals detect small components of neuropsychological functions affected by the brain damage and attempt to restore those components. It is assumed that the restoration of component function leads to the improvement of the patient’s overall functioning. The localization paradigm has some advantages and disadvantages to the self of people with TBI. First, this paradigm seems to help the person to create a distance between the self and the brain injury. While delineating the functions as well as structures affected by brain damage, the person can specify residual functions more easily. If the person’s self is identified with the residual functions, he or she can secure the image of intact self for him or herself. Second, this paradigm may allow the person to regard TBI as something like another physical disability. If TBI is associated with restricted areas on the brain, one can imagine the impairment more visually and make it an object to the self. The person may even have more possibility to control it when TBI affects simple functional abilities, such as attention or short-term memory. In fact, remediation of these cognitive functions has been successful to a certain extent in neuropsychological rehabilitation (Levin, 1992; McGlynn, 1990). The localization paradigm has some drawbacks, however. First of all, localization theories may not be useful in understanding the TBI population. Localization theories and the accompanying classification of the symptoms have been constructed through research on stroke patients (L. Miller, 1993). A stroke causes a lesion in relatively limited areas of the brain,
229 Implications whereas the brain damage of TBI survivors tends to be more complex. For instance, Ponsford (1995) suggested that classification of language disorders based on stroke research may not be appropriate for language changes in TBI population. If the localization concepts are not useful in understanding people with TBI, one should take care in using those concepts. Secondly, even if localization theories are applicable to an individual with TBI, this application apparently fixates the “problem” inside him or her. As the findings of this study illustrated, people with TBI have the experience of loss of self while interacting with physical and social environments. The localization paradigm may make people miss other ways to restore the sense of self, such as environmental modification. Third, regarding residual functions as one’s important identity may be difficult when one uses the concepts in the localization paradigm. Such concepts as emotional stability or long-term memory are rather abstract, so that one may not be able to define them as one’s identity. In addition, the stress on one’s strengths may make the weaknesses stand out at the same time. The strengths are always complementary to the “deficits” in this paradigm. Hence, when one attends to the strengths, the weaknesses may also catch his or her eyes. The holistic paradigm. The holistic paradigm assumes that the brain works not as a combination of parts but as a whole. This paradigm became famous when K. Lashley demonstrated in 1929 that the amount of the brain damage, rather than its location, was related to its behavioral consequences (Meier, 1992; Star, 1989). K. Goldstein’s (1939) concept of “selfactualization” was also relevant to the holistic paradigm. He proposed this concept as a framework to understand the behavior of people with brain damage, believing that the self had a tendency to actualize itself by using all the remaining capacities. Thus, the behavior of a braindamaged patient is not a dependent variable of disordered components of the brain but a
230 Implications manifestation of compensating efforts of the whole brain, or the self. In current neurology or neuropsychology, holism is not popular as a research paradigm in comparison with the localization theories. The legacy of the holistic paradigm is still alive, however, in the field of rehabilitation. The holistic paradigm provides a framework to approach an individual with brain damage as a whole person, suggesting that he or she is more than a combination of the partial functions. It is apparently difficult to explain, predict, or control varied behaviors of people with brain damage by using a holistic concept, such as “self-actualization.” However, the holistic paradigm seems to provide a goal for the neuropsychological rehabilitation that is different from the one based on the localization paradigm. The goal can be to restore the equilibrium of the brain as well as of the whole person. Furthermore, some rehabilitation professionals extend the holistic notion and pay more attention to the person in the environmental context. Trexler (1987) named this approach of rehabilitation the “dynamic approach.” Professionals focus on the person’s performance of a practical task, such as social communication or flexibility of thinking. They try to identify the “whole” context that may influence their clients’ performances, ranging from neuropsychological factors to environmental and social factors. The original idea of the holistic paradigm applied to brain function is a double-edged sword. On one hand, the holistic concepts may create an image that an injury to one part of the brain affects the entire self because the brain, which represents the self, works as a whole. Individuals with TBI want to avoid this image of the affected self, as described in the findings of this study. Moreover, this paradigm is still oriented to the deficits or limitations experienced after brain injury. Identified strengths may always remind the person of corresponding weaknesses, as the other side of the coin. On the other hand, the holistic concepts may create a positive image in
231 Implications which other parts of the brain can substitute the affected area. This image will serve as a ground for believing that the person can maintain an intact self in spite of TBI as far as the brain retains intact areas. The holistic paradigm has additional advantages to people with TBI who try to dissociate themselves from the notion of brain injury. When this paradigm is transformed to the dynamic approach of rehabilitation, it is helpful in taking the “problem” out of the inside of the individual and locating it in external conditions. The concept of self can be independent of the functional changes after TBI if the “problem” is reasonably attributed to outside factors. Besides, focusing on more practical tasks in everyday life is advantageous. It allows the person to define residual strengths by using more common terms instead of abstract, neuropsychological terms. Thus, the person may find it easier to attach his or her identity to these strengths. The mind - brain dualism. A philosophical position that postulates the mind outside the brain may affect the way of viewing the self of people with TBI. The above two paradigms share a materialistic idea that mind and brain are identical or that mind is the by-product of the brain’s activity (Warner, 1994). Some philosophers and even brain scientists, however, believe in the dualism of mind and brain while assuming that the mind controls or interacts with the brain. For example, Eccles, a brain scientist, made a hypothesis of three worlds to explain human experiences (Eccles & Robinson, 1984). The three worlds consisted of physical objects and states, states of consciousness, and man-made culture respectively. He believed that the brain, one of the physical objects, constantly interacted with the mind, or states of consciousness. Penfield (1975), a well-known brain surgeon, also took the dualistic standpoint in his last years. Considering that the mind could not be fully explained by brain functions, he hypothesized that human beings consisted of two different components, mind and brain.
232 Implications It seems that this dualistic thought has some benefits for the sense of self of TBI survivors. If they believe that the hypothesis of mind/brain dualism is true, they can assume that only the material part that enables the self to express itself is impaired. In other words, that hypothesis allows them to save an important part of the self that exists in the “mind.” People with physical disabilities subordinate their physique to their non-physical characteristics like intellect when they attempt to cope with their functional changes (Wright, 1983). Yet people with TBI who sustain intellectual challenges could not use this rhetoric. If they find a characteristic that is never challenged by the impairment of the brain, they could identify themselves with that characteristic to secure their selves. The idea that the mind exits outside the brain might be useful for this purpose. The dualistic perspective may locate a “problem” in the individual with TBI again, rather than in environmental conditions or in the interaction of the two. However, the “problem” is outside the self even though it is inside the body. The mind/brain dualism, thus, makes the image of TBI come closer to physical disability that is an object for consciousness. To better substantiate the concept of “mind” that exists outside the brain, one may employ “non-scientific” terms like “soul” or “spirit.” Vash (1994) postulated the “psychospiritual level of development” after the onset of disabilities and wrote that this level had nothing to do with the physical and psychological levels of rehabilitation. Although she did not address TBI issues specifically, this idea can be applied to people with TBI as well. For example, Sacks (1985), who struggled to articulate a ground of worth and respect for his patients with brain damage, reached a similar perspective. Regarding a patient with severe amnesia caused by brain damage, he mentioned that the soul could restore its humanity. This would be possible through religious activities, art, or interaction with nature. Sacks went on to write that the
233 Implications individual could experience the feeling of satisfaction, fullness, or happiness no matter how hopeless he or she might look from a neurological standpoint. As I indicated in Chapter 6, some of the informants also talked as if they had believed in this dualistic idea. Linge (1990), for example, felt that there was a higher level of recovery, relating it not so much to the severity of TBI but as to the “spirit.” The rhetoric of introducing religious notions like “spirit” or “soul” seems to reflect another cultural tradition of the Western world. The concept of mind that Eccles and Penfield used did not carry a religious connotation, but their mind/brain dichotomy is obviously a parallel to the Christian distinction of soul and body. In Western culture, the former is always more valuable than the latter. This value difference allows people to believe that individuals with TBI are worth the respect as a person even if their brain, a part of the body, is severely damaged. This rhetoric is still useful in a society like the United States, where people maintain the religious tradition together with “scientific” knowledge that the brain controls one’s mind. Without this cultural tradition, the rhetoric of the independent mind might not sound convincing. Suggestions for Rehabilitation Practice Finally, I will discuss this study’s implications and suggestions for the practice of TBI rehabilitation. I cannot describe any specific causal relations between professional intervention and behavioral or psychological change of people with TBI. It is necessary to conduct quantitative research if you want to establish such a relationship. This study only suggests possible frames of mind with which rehabilitation professionals can approach people with TBI who are going through loss of self. Strategies suggested in this section are springboards for future practice and research, which should be tested or developed in the field. First, I will reconsider how one can understand the experiences of people with TBI. The findings of this
234 Implications study seem to provide a new framework to view loss-of-self experiences. Second, potential intervention strategies to deal with loss of self will be presented. Self-narratives of people with TBI can be an important focus for these strategies. How to Approach Loss of Self The typology about loss of self formulated in this study can be useful in understanding people with TBI. This study explored perspectives of people with TBI and identified four categories through which they experience loss of self. As discussed above, these categories cover the wide spectrum of experiences that people with TBI have about themselves. The combination of these categories represents not only the uniqueness of TBI experiences but also their commonality with the experiences of people without TBI. When rehabilitation professionals approach the client with TBI, they should pay attention to his or her commonality with people in general as well as individuality as a TBI survivor. This typology may also serve as a framework to assess various aspects of loss of self and to set a goal for intervention. Uniqueness and commonality of loss of self. The categories of loss of self found in this study represent unique characteristics of TBI experiences especially in the chronic stages. It is true that people with other acquired disabilities and chronic illnesses also have similar experience that can be called “loss of self.” However, the content of loss-of-self experience may vary with the population. The experience that a non-TBI population has may involve just one or two categories in this typology, or their experiences may be beyond the four categories. As I suggested above, this variation may comet from characteristics of the disabling condition, such as its acuteness at the onset, its visibility, and its societal images. Rehabilitation professionals, therefore, should not simply apply to people with other disabilities the categories of loss of self found in the TBI population, or vice versa.
235 Implications Moreover, people in the postmodern age may experience loss of self even if they do not sustain any disabling conditions. People in the modern age could believe in human reason that had the power to make progress in society and to emancipate human conditions. They have lost that belief in this postmodern age, however, while endangering their self-concepts (Kvale, 1992). Theorists like Dowd (1991) and Gergen (1991) have written that the self has disappeared or will disappear in a flood of images supplied by mass media. Thus, every image for the self becomes disposable as an individual adopts any image that appeals to various kinds of audiences in this mass society. People in the postmodern era, like TBI survivors in this study, are experiencing difficulty in finding “signs” that represent themselves (Schwalbe, 1993). However, the typology of loss of self developed here may be inapplicable to the loss-of-self experience of the general public. It is necessary in the future to further clarify the characteristics of loss of self in the postmodern society so that each of us can deal with loss of self more effectively (Hoskins & Leseho, 1996). Besides the uniqueness of loss of self experienced by individuals with TBI, one should not overlook the common characteristics that can be shared with people in general. The findings of this study suggested that one could understand many TBI experiences as a variation of one’s ordinary experience of the self. As I mentioned earlier, for instance, Neisser’s (1988) theory of self-knowledge, which was developed for people in general, is applicable to the loss-of-self experiences after TBI. He postulated that an individual’s self-knowledge is constructed through several pathways, such as remembering past personal events, interacting with physical and social environments, and taking a role in society. These pathways roughly correspond to the categories of loss of self found in this study. People with TBI, thus, cannot construct a consistent selfnarrative because some of these pathways have become dysfunctional after TBI.
236 Implications Also, many strategies that individuals with TBI adopt to manage the sense of loss of self are virtually the same as those that people with no TBI use. Making a downward comparison and belonging to a group in which the self-concept is supported, for instance, are common strategies when people attempt to maintain or to increase self-esteem (Banaji & Prentice, 1994; Schlenker & Weigold, 1992). The only difference is in the items that one chooses for the strategy. For example, people without TBI are likely to make downward comparisons with other people, whereas some individuals with TBI tend to use the image of the pre-injury self in the same strategy. Given this commonality, rehabilitation professionals may be able to understand the client’s loss-of-self experience more empathically. They may picture the loss-of-self experience after TBI even though they have not had the same experience as a direct consequence of brain pathology. Some professionals like Pollack (1994) believed that they could not understand empathically people with TBI, who often had emotional changes caused by TBI. That is not always the case, however. Professionals could put themselves in the client’s shoes if they remove or add some conditions to their own experiences. The rehabilitation literature has emphasized the importance of objective assessment of TBI survivors because of the complexity of TBI symptoms (e.g., Lezak, 1995; Thomas, 1989). Yet the objective assessment should be supplemented by the empathic understanding especially in the counseling setting. Functions of the typology of loss of self. The typology of loss of self proposed in this study may function like a map that guides rehabilitation professionals when they try to understand a loss-of-self experience of people with TBI. As I mentioned in Chapter 2, what one calls “reality” is a network of words and concepts (Saussure, 1959/1931). To understand other people’s experiences, therefore, the person should reconstruct the network that they have
237 Implications constructed. I believe that the categories in this typology, which were abstracted from the narratives of people with TBI, better reflect their reality. Without those categories, rehabilitation professionals might view their clients through their own network of concepts and miss some aspects of loss of self. Professionals should always note that loss-of-self experience of people with TBI has several aspects, not just one. They may be able to refine this typology further when they see individual clients. When rehabilitation professionals assess loss-of-self experience of the client with TBI, they should not expect to see every category in this typology. The client’s characteristics, such as the severity or the length of time after sustaining TBI, may influence the pattern of loss-of-self experience that the client has. The findings of this study, as well as the literature like Doolittle (1991), suggest that individuals with TBI can go through several different phases regarding loss of self. During the early recovery stages, they are likely to care more about the opaque self and the devalued self than about the labeled self. They may begin to experience the labeled self as a sense of loss when they need to interact with people and society. Also, experience of loss of self may change its manifestation after many years of community life. One of the informants who sustained TBI 28 years before was, for instance, somewhat different from other informants of 3 12 years’ post-injury, in terms of the “social comparison” strategy. She often compared herself with her co-workers or classmates in graduate school, whereas other informants mostly compared themselves with their pre-injury selves. Although I cannot draw any conclusion from one case, it is possible to state that the form of devalued self may become different after a long time. Another function of this typology is that the categories of loss of self can be simply transformed into possible goals of intervention. Professionals cannot approach the whole
238 Implications experience of loss of self at one time. When they find the client with TBI having concern about opacity of the self, for example, they should assist the client to recover some knowledge of the self. The goal is, in other words, to reestablish the relationship between him or her and the environment by increasing the understanding of what he or she can do in the environment. Also, “valued self” may be another goal of intervention when the experience of the devalued self is conspicuous. Professional intervention may involve helping the client to construct a “realistic” goal that he or she can achieve, instead of an impossible goal that is far beyond his or her functional status. Lastly, professionals can transform the “labeled self” into an intervention goal of restoring the shared meaning of self. They may want to facilitate other people’s acceptance of the client’s self-presentation. Narrative as a Means of Intervention Professionals in TBI rehabilitation should return to the client’s self-narrative in dealing with the loss-of-self-experience. First, it is necessary for them to carefully listen to the client’s remarks while paying attention to his or her actions. This step, in which they construct and accept the client’s self-narrative, provides a basis for any emotional and psychological support. It also helps the client to construct his or her story, which may be more consistent or may include issues to be pondered. Then, professionals can take a step further and assist the client to modify the self-narrative that is related to his or her experience of loss of self. They can approach the client’s self-narrative directly and try to modify it during the counseling sessions. They can also deal with the self-narrative indirectly by changing the external conditions that support it. Recently, psychotherapists and counselors are beginning to focus on their clients’ narratives for the target of their intervention (Hoskins & Leseho, 1996; Howard, 1991; White & Epston, 1990). Some rehabilitation professionals as well are starting to attend to the descriptive approach as a
239 Implications part of their practice (Spencer, Krefting, & Mattingly, 1993). Even though they do not work with people with TBI, their techniques and strategies are suggestive for TBI rehabilitation. Direct intervention. In a direct approach, professionals directly try to modify the selfnarrative of the client with TBI so that he or she can be more comfortable with it. White and Epston (1990) suggested that the essence of intervention was to help the client to replace the story that one is a “problem” with another story that one has a “problem.” As a result of the intervention, the client could externalize the problem and manage it more easily as an object. Professionals who engage in TBI rehabilitation can apply this idea to the counseling of TBI survivors. Thus, they should help the client with TBI to construct a story in which he or she can objectify and control functional changes as well as brain injuries. The direct approach is particularly useful in dealing with the opaque self and the devalued self. The story of the opaque self may be modified to a certain degree when professionals educate the client with TBI about his or her functional changes. For example, results of neuropsychological examinations are difficult to understand for people with TBI not just because of their cognitive changes but because of the technical terms (Barry & O’Leary, 1989; Larson, 1992). Professionals should translate the results into everyday language and communicate them with the client through his or her intact communication channels. This is not a pronouncement of the diagnosis of functional changes. Together with the explanation of functional changes, professionals should provide as much information as possible about how to control these changes. This information is crucial in fostering the senses of control and agency in the client. In addition, professionals should carefully compare the results of objective tests with the client’s subjective experiences, complaints, or concerns. If the results contradict the client’s subjective view, it is necessary to explore the reasons for that contradiction, rather than just to dismiss his
240 Implications or her view. Otherwise, professionals may cause or exacerbate the experience of the labeled self in the client. To change the story of the devalued self, professionals can assist the client with TBI to find strengths and positive aspects of his or her functional ability. Pollack (1994) suggested that professionals should explore during the early stages of intervention the client’s view of his or her brain injury. In order to recover the value of the self, the brain injury should be represented as not affecting every characteristic of the client’s. I would recommend that professionals assist the client to discover some important characteristics that are relatively free from TBI. According to Goffman (1961), a person expresses one’s uniqueness or individuality by distancing the self from a given role. The term TBI is like a role in that it has a power to determine characteristics of the person with TBI from the outside. The self can be distanced from TBI when the person can regard residual strengths as his or her identity. The simple dichotomy of intellect and physique, which may be used in rehabilitation of individuals with physical disabilities, is not valid here. People with TBI would need a more sophisticated view of the person’s capabilities to identify the strengths. As I mentioned above, the concept of spirit or soul may be helpful to some clients. In dealing with the devalued self, it may be also helpful to examine not only the client’s present functional status but also his or her life story in its entirety. People change the meaning of experience by developing another frame to interpret it (Goffman, 1974). The client with TBI may find a way to reframe the TBI experience when one puts it in the context of the whole life. If the client can take meaning out of that experience, he or she will feel more comfortable with the present self. Professionals may be able to help the client to identify another cultural value from which to reframe his or her experience. For instance, an informant that I referred to in Chapter 6 reinterpreted his life by seeing it from the moral standard. He could discount his pre-
241 Implications injury life and made his present life look better. However, professionals cannot directly apply his strategy to every client with TBI since that strategy was available because of his unique background as well as the change in his long-term memory. Professionals should consider specific characteristics of each client’s functional status and background in assisting the reframing of his or her experiences. Rehabilitation professionals have to be careful about applying the direct approach to people with TBI because it may have the reverse effect. As described in Chapter 7, the same strategy to modify the self-narrative can carry a different meaning, depending on who uses it. The individual with TBI may employ a strategy for oneself to pay attention to positive aspects of life. He or she can become more comfortable with the self as a result. When professionals press the same strategy upon the client with TBI, however, he or she may interpret it as a sign that indicates that professionals discount his or her discomfort. This will not only spoil the working relationship between the professional and the client. It will also develop another narrative of the labeled self by making the client feel that the professional defines him or her in a wrong way. Rehabilitation professionals, therefore, should not press onto their client any strategy to change the self-narrative. They can suggest or hint at the strategy or develop an environment or a counseling relationship in which the client is likely to find the strategy. Here, professionals need an indirect approach to loss of self to avoid unwittingly contributing to the development of the labeled self. Indirect intervention. Rehabilitation professionals should pay attention to the external conditions to modify the self-narratives of people with TBI. A self-narrative is not what the individual constructs by him or herself irrespective of the outside world (Gergen, 1994). If professionals believe that a self-narrative exists inside the client, like an entity, they may come to
242 Implications assume again that the client is a problem. Rather, a self-narrative is a product of social interaction and reflects, to a considerable extent, the social context in which the person lives. Professionals should find the conditions that seem to support the story of loss of self, and change them or help the client to change them. The conditions may be characteristics of the physical environment, dynamics within the client’s interpersonal relationship, and even their own attitudes toward the client. The opaque self may be alleviated by the environmental modification to a certain degree. For example, the person who sustains distractibility will become more functional if the environment is free from too much noise and many visual stimuli (Sachs & Redd, 1993). He or she would know more about what he or she could do in such a stable environment. Rehabilitation professionals need to educate people like the client’s families, employers, or co-workers so that the people can change the client’s home or job environment. Also, developing a support system around the person with TBI may be another strategy to reduce the distress from the opaque self. One would feel more secure if one knows that other people would cover his or her potential mistakes or failures. As I pointed out in Chapter 7, however, professionals should assist the person to develop a story that he or she offers something to other people in return. Without such a sense of mutuality, the client might go through additional loss and devaluation of self. Environmental modification does not just mean changing the physical environment; it should extend to the change of the social system. Gecas (1989) emphasized that one’s sense of self-efficacy was related to responsiveness of the social system, as well as to the belief in one’s ability to perform a certain action. The person could get a sense of futility about his or her action, which is one kind of loss of self, when either element of self-efficacy is lacking. The findings of this study suggested that many informants felt that the current social service system was
243 Implications ineffective and inefficient. People with TBI may not get proper services or treatment while feeling at a loss about what they can do in society or will be able to do in the future. A documentary film “When Billy Broke His Head” (Golfus & Simpson, 1995) also revealed some of the serious challenges that people with TBI could face in American society. In 1996, the Traumatic Brain Injury Act was passed by the Congress of the United States. It authorizes the federal government to provide funds for TBI prevention, treatment, rehabilitation, and research. It is to be hoped that this Act will facilitate improvement of the service system for the TBI population. One’s sense of the devalued self may be mediated by other people’s expectations of him or her. People with TBI may devalue themselves because it seems that others devalue them. If the client with TBI is concerned about inability to play the role of breadwinner of the family, for example, he or she may believe that family members are expecting the client to play that role. Professionals should determine the conditions under which the client attaches importance to that role and should figure out how to change or replace these conditions. They may need to attend to the financial situation of the family or to consider family dynamics. Again, the focus of the intervention is on people around the client. Professionals should help them to understand the client’s functional changes so that they may not have too much expectation. In approaching the client’s sense of the labeled self, rehabilitation professionals should also intervene in the interpersonal environment of the client. As I discussed above, the labeled self reflects the discrepancy between the self-image that an individual with TBI has and the images that other people construct about him or her. Professionals can work with people around the client to remove this discrepancy. It may be helpful to provide information about the client’s functional status, including strengths and available community resources as well as the areas of
244 Implications activity in which the client needs some support. This information allows people around the client to avoid stereotypical thinking about what he or she cannot do. Also, professionals should tell them how the client wants to be seen by other people. This will facilitate the communication between the client and people around him or her while negotiating his or her image in their relationship. In mediating the images of TBI, professionals may want to clearly distinguish TBI from other disabling conditions, such as mental retardation and mental illness. One of common concerns that the informants reported in this study was that society tended to confuse TBI with these conditions. Professionals should educate people by providing objective information about the possible causes of TBI symptoms. However, professionals should be aware of “side-effects” as well when they distinguish TBI from mental illness or retardation to protect the client against the stigma. This distinction may preclude the client’s interaction with these groups of people although the relationship might expand his or her experiences. Also, this strategy consequently contributes to the stereotypes that society has about these groups. This is disadvantageous to people with TBI after all because society does apply the same stereotypical way of thinking to any minority group while producing and reproducing negative images of these groups. Society defines the difference in characteristics among people as a difference in values. Professionals need to challenge prejudice and discrimination against all minority groups when they deal with issues specific to TBI. In considering environmental change, rehabilitation professionals should keep in mind that they are part of the client’s environment. They are likely to forget that they may be influencing the client when they see him or her in human service settings (Nochi, 1996). They may believe that their approaches are “objective,” but there are no such things in the
245 Implications professional-client (consumer) relationship. Their practice is always influenced by many preconceptions or outside demands and produces an effect on the client’s rehabilitation outcome (Ben-Sira, 1986; D. Biklen, 1988). Professionals, therefore, should be conscious of how the client thinks about their approaches, and the programs that they offer should be seen from the client’s point of view. Community-based services for TBI are still in the beginning stage of their development. In order to ascertain that the services really meet the service-recipients’ needs and demands, professionals must obtain frequent feedback from their service-recipients. One of the advantages of paying attention to the client’s narrative is that professionals are always represented there. Conclusion This study attempts to understand individuals with TBI, not as patients who came to see doctors but as neighbors or people who live in the same community. For this purpose, I examined the informants’ self-narratives rather than their TBI symptoms to discover their specific perspectives. I focused on the issue of loss of self to find its categories and concepts that they were likely to construct in their community lives. The main categories that I abstracted from my informants were “loss of single self history,” “the opaque self,” “the devalued self,” and “the labeled self.” This model may not cover experiences of the whole TBI population. If the researcher pays more attention to individuals who have gone through a transformation of the self accompanied by political awareness, for instance, one might construct a different model. I would expect that any other models would not fit the findings of my study though they may introduce additional dimensions related to construction of the self. In this inquiry process, some essential aspects of understanding of individuals with TBI as “people” became clearer. Rehabilitation professionals, especially those engaged in
246 Implications community-based services or counseling services for the TBI population, should consider these aspects for their practice. These aspects may serve to develop a new relationship through which to further satisfy the needs of their clients or consumers. The first aspect is to understand the individual with TBI through his or her own self-narrative. The individual constantly makes a story about him or herself while attaching specific meaning to the situation. His or her concerns, distress, needs, and wants are often represented in the story. Professionals should not assume that they understand his or her situation better because they know technical terms associated with the person’s medical condition. This study suggests that even the notion of brain, as well as loss of self, is not a self-evident, “objective” fact. Professionals should bracket their professional knowledge and investigate the client’s self-narrative through remarks and actions. I suppose that many other notions or terms used in TBI rehabilitation may produce misunderstandings and discommunication when professionals believe that they understand them well without due reflection. Further qualitative research may be necessary to find such notions and clarify their meanings to people with TBI. The second essential aspect is that understanding of people with TBI involves the attention to relationships that they have in their self-narratives. I showed some categories of loss of self in this study, but each of them reflected relationships in which the informants located themselves. Thus, the opaque self, the devalued self, and the labeled self are related to the relationships of the individual’s present status with physical environment, with one’s past and future, and with others or society respectively. Relationships like these are important not just in understanding loss-of-self experience of people with TBI, but also in understanding other meanings that they associate with their worlds. Professionals should pay attention to their clients in the network of relationships, instead of assuming that they are biological entities detached
247 Implications from those relationships. Professionals also should bear in mind that they are part of the network in the clients’ worlds. The third aspect of understanding people with TBI is to consider similarities of TBI survivors to people who do not have TBI. Medical and neuropsychological viewpoints are likely to focus on “problems” in the individual with TBI while stressing the differences that cannot be found in general populations. However, rehabilitation professionals should also view their clients as having the same characteristics that they have, if they wish to understand them in an empathic way. This study discovered in the informants’ self-narratives a considerable number of common features that both people with and without TBI could share. Strategies that the informants used to overcome loss-of-self experiences, for example, could be adopted by people in general, too, when they confront challenges in their daily lives. Bogdan and Taylor (1989) suggested that social acceptance of people with disabilities would accompany society’s recognition of their “humanness,” or their characteristics that were common to all human beings. This may be true of the understanding of individuals with TBI as well. The final aspect of understanding individuals with TBI was not explicitly described in this study, but I would like to add it to conclude this study. Rehabilitation professionals need to constantly renew their understandings of TBI survivors while stopping before their “otherness.” The categories and concepts presented in this study are not a goal but just a starting point for our mission of understanding individuals with TBI as “people.” If professionals limit the understanding of the client to these categories, they would miss their individuality again. They should rather suppose that these categories are like guideposts leading their awareness of each TBI survivor’s perspective, which is unique and changing in context. As Gurevitch (1988) pointed out, “others” could come to look like strangers even though the person once may have
248 Implications believed them to be familiar. That was why they were called “others.” Gurevitch went on to state that this “otherness” did not hamper but could activate communication between the one and those others. Everyone stops before such otherness in daily interaction with people and reconsiders one’s relationship with them again and again to build a better relationship. Professionals in TBI rehabilitation also need to repeatedly reconstruct their understanding of their clients in the interactions with them, just as every one of us does in daily life.
249 Appendix
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257 References REFERENCES
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