Living with Brain Injury

Narrative, Community, and Women's Renegotiation of Identity

J. Eric Stewart

• Publisher: NYU Press
• Year: 2013
• ISBN:
  9780814760956
• Topic: Psychology
• Subtopic: History & Theory in Psychology
• Index: Psychology

When Nancy was in her late twenties, she began having blinding headaches, tunnel vision, and dizziness, which led to the discovery of an abnormality on her brain stem. Complications during surgery caused serious brain damage, resulting in partial paralysis of the left side of her body and memory and cognitive problems. Although she was constantly evaluated by her doctors, Nancy’s own questions and her distress got little attention in the hospital. Later, despite excellent job performance post-injury, her physical impairments were regarded as an embarrassment to the “perfect” and “beautiful” corporate image of her employer. Many conversations about brain injury are deficit-focused: those with disabilities are typically spoken about by others, as being a problem about which something must be done. In Living with Brain Injury, J. Eric Stewart takes a new approach, offering narratives which highlight those with brain injury as agents of recovery and change in their own lives. Stewart draws on in-depth interviews with ten women with acquired brain injuries to offer an evocative, multi-voiced account of the women’s strategies for resisting marginalization and of their process of making sense of new relationships to self, to family and friends, to work, and to community. Bridging psychology, disability studies, and medical sociology, Living with Brain Injury showcases how—and on what terms—the women come to re-author identity, community, and meaning post-injury.

1
People and Methodology

The first interviews conducted for this study were with Rose and Cindy, both of whom asked many questions about the study, its aims and methods. Both women also offered specific advice about how I should (and shouldn’t) proceed. Cindy, who had conducted life history research on people with disabilities for her (post-injury) master’s degree, first corrected my notion that people with acquired brain injuries would divide their lives into “before and after” chapters or selves:

CINDY: There usually—my research, and you can quote me on this [ES: Okay]—there are several turning points. There’s never one. I would advise you to encourage people to talk about some of the turning points. Um, and there are many. What I was doing, and I don’t know if this would help you at all, is that when I interviewed people I talked about the first year prior to the injury, I did like the year pre-injury, then I asked the same questions and moved to a year post-injury, and then I jumped way ahead to like the present. [ES: Okay] And I did some of the same questions, to try to, to have a context to stimulate conversation. And I would get different turning points—because you do have different turning points. I mean at the beginning, there’s just such um, I’d say one of the benefits of having a traumatic brain injury in one’s life [Cindy then ES laugh] is that—for me—and I think this might be head injury [Cindy laughs] I don’t know, but there were so many things I still hadn’t done, um, pre-injury, and that I’d be doing post-injury. I don’t know if everyone is dominated by this need to do all these things post-injury, but I think I find a thrill in doing something new, different. Like I remember the first time I travelled on a business trip on my own, was just, um it was fourteen years later, um, after. I had been on a plane, I had done several trips, but I had people meeting me both ways, you know. But I hadn’t done the whole shot where I did the taxi to the airport, gone through the airport—the airport script [laughs]—that script had not been rescripted at all, for fourteen years. So it really changed how I looked myself, it added meaning and, um, dimension. The quality of oneself and how one looks at oneself, and what one is able to achieve. So, um, yeah, try to find out about the many turning points.

Within a few minutes Cindy had: apparently decided I was worth talking to; checked any misconceptions about who could claim expertise in the relationship and in regard to brain injury recovery; troubled, even displaced, the construction of pre- and post-injury identity in the medical/rehabilitation literature as the defining turning point; and offered methodological advice for asking about many turning points and making room for participants to discuss a whole life. Furthermore, her account clarified an important, easy to miss distinction between the deficit-driven “heroic overcoming” narrative and what Frank (2004) would call a “quest narrative,” which, as Cindy’s telling illustrates, is driven by a creative becoming. The intervention always steered me clear of the claustrophobic tendencies of most brain injury research and toward a greater attention to and facilitation of capaciousness.

In fact, many of the women offered advice—prescriptive and proscriptive—for talking to women with brain injury. This advice usually came after they had already asked me, in one way or another, a lot of questions about me, my interest in them, and who else I had talked to. These interactions are significant on a number of counts, some of which were implied in the previous chapter: the women were concerned about how they would be represented, what the interview experience would be like, and maintaining some control over that experience and over how they would be represented. Many of them were concerned about the experience of the other women I had been or would be interviewing.

The interactions were significant as well because the initial “testing” process and the information the women offered provided methodological and epistemological direction. As an academic, I knew there would be a critical turn when it came time to analyze and interpret the transcript material, a turn that can represent a moment of objectifying betrayal in ostensibly collaborative qualitative research, particularly with marginalized voices. The initial interrogations established frank relationships that allowed both an asking and answering of critical, even confrontational, questions as the interviews progressed. That is, critical analysis could happen in the context of interviews, not just in the after-the-fact transcript analysis and write-up. Being able to be reciprocally critical throughout mattered because it facilitated many shifts in epistemology and theoretical direction over the research process. It mattered too because at the time critical disciplines were ambivalent about the use and value of voice and experience. For instance, within disability studies there were controversies about the naïve deployment of first person accounts and life history work, about singularizing or sentimentalizing disability, and about reinscribing disabling ideologies and subjectifications. The possibility for engaging in a mutual troubling and exposition of perspectives and interpretations resolved some practical and theoretical concerns about voice, representation, and the relationship between experience and critical theory.

Participants and Settings

Locating the Women

Because this was an in-depth, extended interview study, the number of participants was necessarily small. The first people I interviewed (Rose and Cindy) were women, and I decided to keep the focus on women in order to avoid one set of complications in interpretation. Including men would have made comparisons extremely hard to avoid, and with a small group of people comparisons would have been misleading at best. Furthermore, women with brain injuries are particularly underre-searched. The language demands involved in an interview study dictated an inclusion criterion of fairly high language abilities, excluding women with serious speech-production problems or aphasias. This meant that most of the women had right-brain injuries (RBIs), although several had more diffuse injuries that included areas of the left hemisphere.

The primary (or most convenient) place to find brain injury survivors has always been medical and rehabilitation settings. In these settings, however, one is likely to find people in the early stages of recovery and rehabilitation leading to a truncated, deficit-focused understanding of recovery, particularly in regard to questions of identity and identification. Working with people in these settings also likely exaggerates the role and importance of medical discourses and practices in the processes of living with brain injury. Therefore, it was important to identify women further along in living with brain injury, and so removed from rehabilitation settings.

Finding and making connections with these women was no small part of the project. It is difficult to gain access to a “network” of brain-injured people for several related reasons. First, they aren’t particularly interested in being found. That is, as many of the women here noted, academic interest in them has been largely exploitative and objectifying, with little interest in their experience and lives, so they aren’t especially eager to be “subjects.” Second, brain injury is often an “invisible” disability, and many of the women like it that way in many contexts of their lives. Identification as brain-injured is often selective and strategic, and not particularly public. This relates directly to a third point, one that may underlie all the others: trust. I would not have made contact with most of the women without being vouched for by somebody they knew. My first and key contact, Cindy, was the first link in a chain of connection to six of the women, and I only met Cindy through her public role as an advocate for women with disabilities. That is, in relation to the factors I just enumerated, Cindy was intentionally visible and public, and she was also adept at negotiating the terms of research relationships. In the different context of a hospital in a small city, the women participated because they trusted a friend of mine who worked in the neuropsychology clinic there and advocated for the project and for me. The spaces these women and other people occupy as brain-injured people are not public spaces in the usual sense, and strangers did not have easy access. Once I was in I was in, but it took some time and some self-accounting to establish that status.

Ten women with brain injuries participated in formal interviews. Three came from a small midwestern city or one of the very small towns nearby. The other seven women came from a large midwestern city and its suburbs. The women ranged in age from seventeen to fifty-three, and at the time of the first interviews they ranged from six months to around twenty-eight years post-injury. Two of the women were African American and the others were white. Three were married, two were engaged, and one self-identified as lesbian or queer. Nine of the women had at least two years of college, and one was still in high school; six had attended or were attending graduate school. (Many of the women began or completed their graduate work after their injuries, a fact involving a number of considerations and will be discussed in subsequent chapters, particularly chapter 5).

All of the women’s injuries were classified as severe, but there was considerable variation in the effects of those injuries. For the most part those injuries and their effects had little impact on the interview process. What effects there were or might have been varied by participant, context, and topic and do not allow for any general characterization. The women were all quite fluent and had few problems presenting their accounts. In the instances where the effects of the women’s injuries did in some way or another figure in the interview process, or in communication more generally, those dynamics are discussed in the context of their accounts.

What follows are brief thumbnail biographical profiles of the women, drawn from their interviews and autobiographical accounts. These short sketches are meant to provide an orientation or reference point for the reader, not to capture the women’s lives. (The appendix provides a table of briefly summarized characteristics of each of the women, which may be handy as a kind of program of players in reading the chapters to come.)

Rose. Rose is a single African American woman in her mid-forties, from a working-class background. She was living in a midwestern university town where she was working toward a master’s degree in oral history. Rose received right parietal damage in a closed-head injury as a teenager, but she was not correctly diagnosed until twenty-four years after the fact (about four years before the interview). In the meantime she received numerous misdiagnoses, from learning disabilities to schizophrenia. It was only by a series of “fortuitous connections” that she was eventually correctly diagnosed. She continues to hold some anger toward mental health professionals in general, an anger that she feels kept her going.

Rose describes the years following the injury as frequently “nightmarish,” marked by posttraumatic symptoms and “low self-esteem and self-blame.” She got a BA with the help of “people who had no understanding at all of [her] problem,” who believed in her and took her eventual success as “an article of faith.” Her mother died about four years before our meeting, and that event precipitated her worst encounters with the mental health system: her “flipping out.” Since obtaining a correct diagnosis, she has been involved in some rehabilitation work with a neuropsychologist, and she has become involved in head injury support and community education. At the time we met, Rose was engaged in her own research on the oral histories of people with traumatic head injury and their families (this will be discussed in chapter 5).

Tracy. Tracy is a single seventeen-year-old white woman living in a very small midwestern town. Approximately six months prior to the first interview, she was involved in a car accident that resulted in a right parietal fracture, right and left occipito-parietal hematomas, and a left frontal concussion. Her condition deteriorated while in the hospital (due to the hematomas) and she was in a coma for a few days; she had posttraumatic amnesia of three days, and pretraumatic amnesia of less than an hour. At the time of the interview she was experiencing some emotional problems (depression and irritability), aggravated by difficulties with social perception, and some cognitive difficulties mostly involving memory and attention. Her main concerns however were about “how people are treating [her] differently” since the accident, and that her doctors “don’t want [her] playing basketball because it could kill [her].” Sports are a key part of Tracy’s identity and social life.

Tracy has lived in the same small town since she was born, attending school and church with many of the same people for much of her life, and she is quite embedded in her particular cohort of friends. She characterizes herself as an average student. She was highly active in varsity sports prior to the injury (track, softball, and basketball) and just tentatively returning to play at the time of the interview. Tracy has two younger brothers; her father is a farmer and her mother has a white-collar position at large company. Her parents divorced about five years prior to the injury; she spends half the week living with her father and stepmother and half with her mother and stepfather. At the time of the interview, she was still involved in rehabilitation and on half-time schedule in her senior year of high school.

Sarah. Sarah is a forty-nine-year-old white woman who was about a year post-injury (six months out of the hospital) at the time of the first interview. She had moved to a very small midwestern town when she married her third husband about a year and a half prior to the injury. Her husband is a farmer, but he is also a volunteer paramedic who was called to respond to the accident in which his wife was injured, a car collision near her home that happened en route to a wedding rehearsal with four other women. Sarah received extensive injuries to right frontal-parietal and temporal areas, was in a full coma for about three weeks, and had pretraumatic amnesia of one week (much more according to her husband) and posttraumatic amnesia of approximately six weeks. Her pelvis and right rib cage were crushed and her right eye cut through in the collision. At the time of the interviews, she had some persistent sensory perception and motor deficits in her left side, and her vocal cords were partially paralyzed so that she required a tracheotomy tube for breathing. Speaking required her to cover the tube with her finger and pull air up over her vocal cords. She was still experiencing cognitive problems, particularly with distractibility and short-term memory.

Sarah and her two sisters were raised in the Church of the Nazarene in small towns in the West and Midwest. After graduating from a Nazarene college, she worked as a model and as an interior decorator. She adopted an infant son as her first marriage was ending. When she divorced her second husband, a military man like her first husband, she turned to professional motivational speaking and image consulting. Following her “spiritual calling,” she moved to the desert Southwest around nine years before marrying her current husband (also on a spiritual calling), where she became a leader and teacher to an extended circle of people. Although she disavows official membership with any one church or religion, she is a licensed minister and had been a substitute minister in one of her town’s churches prior to the collision. She and her husband hold strong but somewhat nontraditional Christian spiritual beliefs that also define their relationship to the accident and injuries, as well as many of their social relationships.

Cindy. Cindy is a white woman in her early forties and was nearly fifteen years post-injury at the time of the first interview. She lives in the suburbs of a large midwestern city. Her husband is a bank executive whom she had known prior to the injury, but she only became romantically involved with and married him several years after it; they have a young son. Cindy and her then fiancé were violently attacked in their sleep during a camping trip in Hawaii. The attack left her fiancé dead and Cindy with extensive open-head injuries to most of the right hemisphere. The injury left her partially paralyzed on her left side and with loss of vision in the left visual field and hearing in the left ear. She is able to walk with a leg brace and cane but increasingly uses a motorized scooter, in part because of rheumatoid arthritis. Cognitive difficulties were not readily apparent to me, but she reported problems with short-term memory, distractibility, and attending to more than one source of input at a time. She described a feeling of constant but manageable anxiety, which she identifies as related both to organic effects of the injury and to the violent way in which it occurred.

Cindy was raised in various places around the country. Her parents were middle-class Catholics and children of Eastern European immigrants, but she converted to Judaism when she married. Cindy had achieved success in business but was looking to make a career change immediately prior to her injury. After the injury, she acquired a master’s in philosophy and another in communications. She cofounded and directs a resource center for women with disabilities (the Women’s Center) at a major midwestern rehabilitation center (the Rehab Center), edits its newsletter, speaks publicly on disability issues, and has received several awards and grants for her work in disability services.

Abby. Abby is a single African American woman in her early thirties, from a small-town working-class background, living at the time in a large midwestern city. During her senior year at college she had a stroke caused by a congenital arteriovenous malformation (essentially a missing capillary bed leading to ruptured veins), which affected occipital and parietal regions of both hemispheres, though left hemisphere, especially occipito-parietal, problems are most apparent. Abby is partially hemiplegic on her right side and has some mild to moderate cognitive difficulties, mainly with reading and occasionally with fluency and word finding.

Abby chose to attend a prestigious private college over the historically Black university that her family had expected she would attend. She holds strong Southern Baptist beliefs, which figure prominently in her account. At the time of the stroke, she was majoring in communications and preparing for law school and a career in politics; in fact, she was delivering a public lecture when she collapsed from the stroke. She lived with her mother in her hometown during recovery and rehabilitation; when she began to realize that “everything was returning to normal except for me,” she went back to the college and finished her degree, three years after the stroke. At the time of the first interview she felt that she had been doing “badly” and discussed a few prior suicide attempts and an apartment fire. She was, however, working part-time at a direct social service agency and active in programs for women with disabilities. At the time of the third interview two years later she had begun a graduate program in rehabilitation services, was involved in a “maybe serious” relationship, and talking much more about “moving forward.”

Lydia. Lydia is a single white woman in her late forties, about twenty-eight years post-injury. She lives with her elderly, wealthy parents in a suburb of a large midwestern city. She was injured when her car rolled off the road and she was ejected through the sunroof. The accident caused a long fracture and resultant hematoma beginning behind the left ear and wrapping around the base of the skull to the right temporal lobe. Injury to the brain was diffuse but primarily affected parts of the left temporal and parietal and right parietal areas. She was in inpatient rehabilitation for ten months and continued intensive outpatient therapy for about five years. However, she reports it taking twelve years to finally reach her current level of functioning. She has persistent motor difficulties and partial paralysis to the right side, which also affects her speech production. Lydia also has some memory deficits and has to write and keep track of notes about appointments, tasks, and phone calls.

Prior to the injury, Lydia was a registered nurse, a career that was quite important to her. She is now trying to develop her business as a freelance massage therapist and volunteers part-time at Cindy’s women’s center. Although her parents have made sure that she won’t have to worry about money, Lydia is concerned with finding a meaningful career post-injury (her memory and motor problems prevent her from returning to nursing). After having to “keep trying different ones out” she finally found a church that felt comfortable to her, where they don’t treat her “like a charity case” and let her sing in the choir “even though [she] doesn’t pronounce the lyrics perfectly.” She is quite active in her church, including teaching Sunday school and attending singles’ groups. Lydia credits the accident for bringing her “back to God” and “responsibility,” and she frequently gives people—like me—the testimonial she wrote about God’s miracles.

Nancy. Nancy is a white woman in her late twenties. She lives with her fiancé near a major university in the suburb of a large midwestern city. She works as a consultant for a large accounting/auditing company. She returned to work six months after her injury, though not without having to threaten the company with an ADA suit, and not to her original position. One year before the interview, almost to the day, Nancy began having severe headaches, tunnel vision, and dizziness. She was eventually diagnosed as having an arteriovenous malformation on her brain...