Volume 9, No. 2, Art. 30 – May 2008

Performing My Recovery: A Play of Chaos, Restitution, and Quest After Traumatic Brain Injury

Claire Smith

Abstract: This play is an example of Performative Social Science. The play may be performed for an audience or, equally effectively, be read. I have written my story as a play for the following reasons: 1) reader accessibility, 2) to experiment with a performative approach, 3) to enable the use of multiple literacies, and 4) to explore my performance of my recovery and of the impact of injury on my life story. Three of the characters in the play, Chaos, Restitution, and Quest, perform three of the selves that I have been during my recovery from a Traumatic Brain Injury (TBI). They endure interjections by the presence of "Stigma" who describes how and when I felt stigma. The self "What if" periodically wonders in what alternative directions my life may have headed had I not sustained a TBI. So that the play can be experienced and reflected upon by a wider audience including other survivors, theoretical information that may be of interest to only some readers has been put in footnotes. Although the stories of my recovery are conveyed imaginatively as a play, all the tales told by the characters are my memories of what I experienced.

Key words: performance, self, identity, traumatic brain injury, chaos, restitution, quest

Table of Contents

1. Introduction

2. Cast

2.1 Author's note

2.2 Characters

3. Prelude

3.1 Author's note

4. Act 1

5. Act 2

5.1 Scene 1

5.2 Scene 2

6. Act 3

7. Epilogue

Acknowledgments

Notes

References

Author

Citation

 

1. Introduction

Arthur FRANK (1998, p.330) remarks that we "live stories whether we want to or not, and the only real questions are how aware we are of the stories we are living and how effectively we try to tell some kinds of stories and avoid telling/living others." For a long time I hid from, and probably was not really aware of, the profound influences that were imposed on me by some of the stories that I have lived and have therefore shaped my evolving self1). I avoided telling the stories of the first few years of my life after sustaining a Traumatic Brain Injury. Now, I have discovered that I want to tell others about my experiences. Here, I recount my stories as an illness narrative in the form of a play. An illness narrative is told, according to Arthur KLEINMAN (1988, p.28), to "create knowledge about the personal world of suffering ... [to hear] ... the complex inner language of hurt, desperation, and moral pain ... of having an illness"2). [1]

There are a few reasons that I have chosen to write my story as a play. First, it is essential to me that I make my story accessible to other head injury survivors. Written as a play, I hope that my story can be understood by survivors of varying levels of cognitive ability. Second, I want to experiment with a performative approach. The play approach allows the story to be performed if so desired, but it can also be read if performance is not possible. Norman DENZIN (2003, p.9) explains that performances are ongoing events that "mark and bend identities, remake time and adorn and reshape the body, tell stories and allow people to play with behavior" . Chaos, Restitution, and Quest perform my evolving, fluid identity while they tell my story, revealing "displays of identity, illness and health that can be observed, but are not verbalized" (RIESSMAN, 2002, p.7). Third, this format allows me to include multiple literacies. The play is but one form of representation that I use. Poetry, photography, and art are also featured. Multiple literacies enrich "the domain of expression [and] ... the capacity to realize new worlds—expanding then on the possibility of relationship" (GERGEN & GERGEN, 2002, p.23). Fourth, by writing this illness narrative in the form of a play, I can give my example of how the "experience of ... injury can have profound effects on how we narrate our lives" in the most effective way (ROBERTS, 2004, p.180). In order to keep my story readable on various levels, I have included footnotes of theoretical background which may or may not be of interest to the reader, and are not meant to be a part of the play if it is performed. [2]

The play describes a turning point, or epiphany, in my life. I agree with WAINWRIGHT and TURNER (2004, p.319), who subscribe to DENZIN's (1989) definition of epiphanies, noting that they are "key moments that bequeath enduring impressions on a person's life." Epiphanies can take several forms, one of which is the "major event." The "major event" that I know has not only changed my life, but also how I view life, is a head injury I sustained on September 13, 1997. Because it touched "every fabric of [my]" existence (DENZIN, 1989, p.71), this experience was life-changing; it "alter[ed] the fundamental meaning structures in [my] life" (DENZIN, 1989, p.70). I believe that, after mourning my losses, I looked for the positive alternatives and I realized that my head injury left me with the "opportunity to remake [myself]" (SPARKES & SMITH, 2003, p.312). I think that my use of this opportunity is evident in the play, which I consider to be a tapestry that I have woven of the stories that surround this major event in my life3). [3]

2. Cast

2.1 Author's note

Dan McADAMS (2003, p.187) explains that "The self is many things but identity is a life story." The shifting and fluid selves that I introduce as characters are separated for the purposes of this play, but in life they all blend together and they will all forever contribute to my life story and my identity as it perpetually evolves and changes. Three of these selves are those that I have performed since sustaining a traumatic brain injury (TBI) at an international equestrian competition. As character names, I use Arthur FRANK's (1995) terms chaos, restitution, and quest, terms that he uses to distinguish types of illness narratives. Although still limiting, at least by using these three terms I can somewhat organize my memories, and imaginatively chart my journey from the time of my accident to the present.

2.2 Characters

Chaos:

Chaos and Restitution revisit and reinterpret some of the memories I have excavated from my journey of recovery. I look back to the chaotic times right after I was injured. Chaos describes my life right after my accident: everyone involved "imagined life never getting better" (FRANK, 1995, p.97). After living the chaos, I became:

Restitution:

For a time, my self-image was that of a restored self (ROBERTS, 2004), and I believed that I would live my pre-injury life. Restitution is convinced that there is a treatment for my injury; I will be "fixed" soon and life will be the same (FRANK, 1995). During this period I find myself clinging and clutching to my past. Painfully realizing my life was on hold while I lived this self, I evolved into:

Quest:

Quest looks at the present and then forward to the future in anticipation of what it may hold. The emergent and possible self, Quest describes how I am now, and how I foresee myself being. Quest realizes that my "illness has been a journey" and imagines how I can use the experience of my accident in healthy ways to help others (FRANK, 1995, p.117). FRANK (1995, p.118) explains, "the quest narrative tells self-consciously of being transformed." But, always rearing her ugly head is:

Stigma:

The shadowy, ghostly presence of Stigma is first noticed by Restitution. Restitution chooses to ignore Stigma, but Stigma becomes visible and is acknowledged, labeled, and intellectually understood by Quest. Quest does not, however, emotionally accept Stigma into her life. Stigma remains a lingering, unfriendly presence, never leaving me completely alone. The presence of Stigma and Quest beg the question:

What If:

This self asks questions, imagines, and fictively invents other futures. I will never shake What If. What If I hadn't fallen and had a TBI? What If I had still been competing? What If asks: What if my life to date had been different? [4]

3. Prelude

3.1 Author's note

As time passes, our evolving identities (McADAMS, 2003) are engraved with the experiences, memories, and beginnings and endings that we experience as we venture through life creating our life stories. Time marches stoically forward, oblivious to the etchings, stains, and hiccups that are imprinted on our many selves by major life events. Sometimes the etchings scar so deeply that they alter the shape of a person. The stains either spread or fade as time relentlessly soldiers on. I have had a huge hiccup in my life. I am both etched and stained by its cause: a Traumatic Brain Injury (TBI). I know though, that I am emotionally healthier now than I was before the hiccup.

Setting: The European Three Day Event Championships, Burghley, England, 1997 [5]

Quest: On September 13th, 1997, I was competing at the European Three Day Event Championships at Burghley, England. I was both respectful of and somewhat daunted by the competition's demands, but, at the same time, I was full of anticipation. My quest is to finish the course cleanly. But, when I tell the story of that day, life as I had known it abruptly comes to an end.

I am in the start box of the cross country section of the speed and endurance phase. I feel the weight of the expectations that are always present in any team situation, and I am focused on the job that lies ahead of me. I know it will not be easy. My coach holds my horse Gordon and circles him as I was counted down. On 'go', we gallop towards the first fence, then the second, and the third. Obstacle four was a difficult challenge for so early in the course. After jumping a fence on top of a steep bank, my plan was to jump the narrow part of the next fence, the most direct route. But, while attempting to jump it, Gordon caught his front legs and down we went.

As we fell, we were instantaneously etched and stained by trauma. [6]

What If: I wonder what if. What if I had completed the course? What if I hadn't fallen? I had been hard pressed to imagine a future without riding. What if I had continued to ride in international competitions? What would the future have held? [7]

Chaos: Oblivious to everything, unconscious, I fly peacefully over England in a helicopter. I make it to the hospital long before my parents. They have been snared by a tangled traffic jam on the ground. Construction has slowed traffic almost to a standstill; it is a sea of disorder and chaos. Only one thought occupies their minds—quickly, get us to the hospital, quickly ... now. They are frantic and find themselves outside of and beyond the "normal" scope of reality. Sick with worry, endless scenarios are playing nonstop in their heads: what happened, is she alright? They had been at the competition when I fell at the fourth fence. Unbelievably, a neurologist was at the next fence. He had found his way to my side in no time and then he had assisted and guided the ambulance crew as they prepared to airlift me to hospital.

Goodbye Burghley. [8]

4. Act 1

Author's Note: It was a time of fear and uncertainty for my family as bewilderment surrounded them. They wrestled with the uncertain future we faced. During that confusing time, Chaos managed to ensnare them with its tentacles.

Setting: Several Hospitals [9]

Chaos:

Total confusion
For four months
There was
no longer
an order to time.
Chaos

My parents remember the six weeks I spent in Nottingham, England while I was at the Queen's Medical Center. Initially, I lay in an induced coma. I was diagnosed with a severe Traumatic Brain Injury. My parents were also with me when I was flown home to Canada accompanied by a doctor and a nurse. "We prefer negotiation," my personal medical team had replied when asked by my parents whether I would be medicated to subdue me on the flight. At home in Canada, I was fed an extra hospital dinner each night by my father, who traveled to the Ottawa General Hospital every day on his way home from the office, because he found me too thin. My mother walked with me for hours around the hospital in a successful bid to discourage the doctors from medicating me to keep me quiet. I don't remember any of this. Nothing. Post traumatic amnesia (PTA) kept me from knowing what was happening. Looking back, I am thankful that the PTA lasted as long as it did, thereby sparing me memories of an endless and discouraging time. Even though I was thirty four years old, my parents unconsciously called to action their dormant but instinctive parental roles. When summoned, these roles naturally and spontaneously rose from their long hibernations, springing to life and surging into overdrive.

Where is Claire?

[5 second pause]

I don't know, nor do I care, about much as I languish in a state of nothingness imposed by post traumatic amnesia. My own memories of the first four months after my fall are only snapshots. Most are out of focus. I have lost a lot of them. I drift in and out of being "present." I am absent most of the time. I live only in the "now."

Who am I? I am shown things to help me to remember, to remind me. My dog comes for a visit. I welcome him. I astound everyone by effortlessly lifting the huge Golden Retriever onto my bed. Then I lurch down the hall and introduce him to my new world, the only world I that I remember. I live in the present.

Where am I? I am at a hospital. I stagger around its corridors. I go into other patients' rooms. I greet staff.

How am I? I am fragile. My balance is bad. I have no memory. I think I'm fine. No one else does. For now I am content. I am fed, exercised, and cared for. I am told what to do. Please eat. I am just like my horse Gord.

What happened? I have had a traumatic brain injury.

Prognosis? Excellent ... "In a year you won't know anything happened."

Reality? I will be out of touch with mine for another two years.

(5 second pause)

Now, I become Restitution. [10]

Restitution: Finally, four months after the fall, post-traumatic amnesia finally left me and I re-entered the same world that healthy people experience. The progression of my recovery was lost on me. I still had no idea what I had been through and what had happened. Everyone around me noticed that I started remembering the people, places, and events of the previous days. At the same time that I reached this milestone, I was admitted to the head injury rehabilitation program at St. Vincent's hospital in Ottawa, and so I became a patient in yet another hospital for the next two months. During long days that flowed into each other, I underwent intensive therapy of all sorts—physical, speech, occupational, and cognitive. I was under constant supervision; someone was with me all day, making sure that I followed a "normal" routine, that I ate, and that I went to my therapies. I wore an armband alerting the nurses to my movements so that they would always know where I was. It squawked loudly when I left the confines of the ward. The staff on the ward only began to trust me in the month before I was discharged. At that point they finally had sufficient faith in me to allow me to venture out on my own and find my own way around the hospital. At long last, I was able to sample a just small taste of the freedom most take for granted. [11]

5. Act 2

5.1 Scene 1

Setting: Rehabilitation Clinic for Head Injury Survivors

Restitution: When I was released from hospital, a marathon of outpatient therapy began. It took a year in total to complete the hospitalization and outpatient therapy. Therapy creates artificial situations to teach about real life and how to go about solving its problems. It taught me some things well. What therapy didn't teach me was that I was no longer the same person I had been. So, when therapy ended I believed that I had re-entered the real world, and I assumed life would resume as I had lived it before I was hurt. I thought that life as I was now going to live it was the same as the one that had left with an astounding crash on September 13th, 1997. In my mind, my life had not changed. I was still going to train and compete with my horses. The painful truth which I did not realize, let alone accept, was that my life was now different. But, for the time being, I lived life as I imagined it and as I wanted it to be4). Wisely, my "team" avoided a huge battle by letting me figure out on my own that life had to change.

Off I went. [12]

5.2 Scene 2

Setting: North Carolina

Restitution:

I am fixed
Riding again
Back to life
As it should be
I am better
Things are the same.

Over the next two years, I slowly, in a circuitous manner, became friendly with the new me. I was unable to break free from my old life because I did not realize that I was not who I had been. I was convinced that my comfortable, familiar lifestyle with the horses was the place for me to be now. I tried for more than a year to make my old life work again. I moved to North Carolina, which was my winter home for many years pre injury. I rode again, which was of paramount importance to me while reestablishing who I was. Throughout this time, I did not really understand the significance of the trauma I had experienced and the changes it would impose on my life. Such understanding requires insight, and I was not healed enough to have insight5). So I rode. I also traveled to competitions, this time as a spectator.

I finally became well enough to face life as it now was. I realized that my life had irrevocably changed, and I realized that I was not the same person whom I had been before my injury6). [13]

Stigma:

I became aware
That I had fallen
From a position
Of respect, friendship
And admiration
To one of pity

Pitied by all
Admired by none
An instant and
Unwelcome change
Who am I now?
I wonder

I eventually realized that everyone who was part of my old world saw a huge label on my forehead. "Head Injured" it said. A large percentage of the elite equestrian athlete culture I had been part of pre-injury were unable to see the new person before them. To this day, people from my old life automatically package me into their laymen's perceptions of what head injury is. I didn't know, at the time, what was happening7). [14]

Restitution: As Yann MARTEL (2001) wisely explains in his Mann Booker prize winning novel The Life of Pi, when things don't turn out as you expect, life continues. You then need to make the best of what you have been handed. My life hadn't turned out the way it was supposed to—at all. I had been an athlete: dedicated, motivated, tough, driven, successful, and respected. Falling on my head was a life changing event, causing me and my family endless grief, mourning, and loss. I am no longer the same person; the person I was before the fall is gone. But, although I am different, I am still dedicated, motivated, and driven. Thanks to these qualities, I have recovered almost completely. I finally recognized that, despite my valiant attempts, a return to my old lifestyle was not possible. I had no choice but to accept what life had chosen for me. I moved back to Canada. [15]

What If: What if I go back to school? [16]

Restitution: I became Quest. [17]

6. Act 3

Setting: University

Quest: Three years after my injury, I summoned my dedication, motivation, and drive once more to create a new life for myself. I never in a million years thought I would be back at school. I had used my undergraduate degree in computing science to fund my riding, but my computing job was a means to an end. I needed to find something that captivated me, to find where opportunities for writing and research, thinking and pondering, trying out ideas, creating, and building would abound. I wondered: How can I incorporate my unique experiences into research8)?

I am better.
so forward to
graduate school
where I research
how to use art
to help others.

Tapping into these experiences for inspiration, I questioned whether others felt the same sense of pride and increased self-esteem as I did from completing creative projects. I explored that idea in my MA thesis. Because TBI survivors easily feel frustrated by an endless regime of never ending and seemingly unproductive therapy, I examined how finishing a creative project could add to the participants' self-esteem. To satisfy my own creative leanings, I painted the conceptual framework onto a four by six foot board:



Figure 1: Conceptual framework: Creatively rehabilitating self-esteem: An auto-ethnography of healing [18]

As part of the final product, I painted my interpretation of the data as a large mural. My research found that completing a creative activity did indeed add to the participants' self-esteem. It also added to my own self-esteem:

Now, doing my PhD
I am researching
Traumatic brain injury
I read, I learn, I listen
I have discovered
Who I was meant to be.

(5 second pause)

I don't ride anymore. I haven't ridden for two years. I finally came to the realization, at long last, that I had to make a complete break to become healthy again. It was time to put the final touches on the new me. I am teased by memories and thoughts that occur more and more often: in the middle of the night, when I am driving down the road, when I am sitting at my computer9).



Figure 2: Walking away from it all [19]

I miss riding. I yearn for it. I crave the smell and feel of horses.

Someday, I will journey forward with an open, inquiring mind, and carefully reacquaint myself with the healthy parts of my old life.

Soon. [20]

What If: What if I ride again? [21]

Quest: Today, as I write, I realize it is September 13th again. The date arrives yearly with clockwork regularity to taunt me with haunting memories of the whole ordeal and to tease me with harrowing stories. It is the tenth anniversary of the day my life changed. For everyone involved, the memories of that day are slowly receding, but its significance is always there to remind us of that time. Today, as I decide what memories to commit to paper, the stories almost pester me, refusing to leave me alone.

Things will be better tomorrow.

(5 second pause)

Initially, I actively hid from the stories that have etched and stained me. I refused to acknowledge that I owned these tumultuous times. I dodged these memories as much as I could: tough, weighty memories filled with reminders of a time burdened with (un)realities, a time I was forced to spend in transition between lives. During that time in limbo, before I had found a new direction for my life, I spent an inordinate amount of time avoiding eye contact with the new identity imposed on me by the TBI10). I denied being part of the TBI culture and I shrunk from any contact with it. Although I tolerated my new identity, I still certainly did not welcome TBI into my life. [22]

Stigma:

It was easier
To duck and hide
When I felt that
Assumptions were made
Before people knew
Who really I was11)

Quest: Finally, but only in the last three years, I have accepted that I can no longer try to recover parts of my old identity, it is gone. I am actively imagining stories of my future. I no longer fit the mold of the passive survivor12). I am now a head injury "activist" of sorts: my "briefest moment" has become my inspiration. I am counseling others who find themselves, after head injury, at a loss of what to do. I am speaking to service providers with an insider's perspective about what it is like to have a head injury. I can help them be most beneficial to their clients. I am on research teams funded by the Ontario Neurotrauma Foundation, whose focus is researching neurotrauma in Ontario. My academic research, both at the Masters and PhD level, involves TBI.

I am busy. [23]

What If: I wonder if I will ever live without the unpleasant remnants, leftovers from the accident? [24]

Quest: I wonder that all the time. Sometimes I feel discouraged. An example: Since the accident, it seems that I often do too much. I wasn't ever tired before I was injured, but now I am tired a lot. Sometimes I am very tired, and occasionally I am too tired. Fatigue is a common legacy from head injury. It is no fun at all. On the too tired days, I live in a bubble and I watch the world revolve around me from within it. No one else sees my bubble, but it is there, a film deadening the noises and commotions of the world as life goes on everywhere else. I feel unable to reach out and touch anything, anyone. I can hear you when the bubble is there, but your voice will bounce around while it is trying to reach me. I am left struggling to extricate the meaning of what you said. Life wasn't ever like this before.

I am also discouraged by my sleeping patterns and my lack of ability to multitask. Lists have always been an indispensable part of my life (buy feed, fill water troughs in paddocks, trim Sing's whiskers, call the blacksmith for next Tuesday ...). My mind, previously accustomed to juggling many tasks at once, now has trouble handling even a couple of things concurrently. When 1:30 am rolls around, I wake up, lists forming in my mind. If I don't write them down, I will be trying to memorize them all night. But writing them down doesn't help me sleep. Nothing helps. I read for a while. It is soon 7 am.

I regularly need to give myself a pep talk when I experience such negative feelings, so I make sure that I am really living a Quest narrative. I tell myself that I should write a book that tells the stories surrounding the hiccup I experienced. [25]

What if: Who knows what impact writing such a book would have on me? What does my future hold as I continue unraveling the tangled yarn of my past (ROBERTS, 2004)? [26]

Quest: I find myself looking forward to the future with anticipation. Writing heals. Telling heals. Etchings and scars soften and eventually vanish over time. The stains are less noticeable. Time has helped them to fade.

I know that I am healthy and happy again. [27]

What if: But, even if I am happy in my life now, do I want my memories of this upheaval in my life also soften, fade, and slowly, quietly, vanish? [28]

Quest: The memories are fading. I grasp at these memories, keeping them close, not letting them go. I feel them slipping away; but I have discovered that I don't want to lose them. [29]

So I write stories. [30]

7. Epilogue

This play has been written as an example of Performative Social Science. One day, I hope to be part of its manifestation. When I watch it being performed, will I be able to experience the play as a series of post-injury scenes of my fleeting identity, each scene composed of multiple and evolving selves? Will others be able to experience the play in this way? Have I really succeeded in sharing my journey—even a tiny bit? I think the play is accessible to readers. To ward off confusion brought forth by the many "I's" in the play, readers must remember that these "I's" are all part of me, my identity. It really doesn't matter, nor does it change the story, if you lose track of which "I" is speaking. I believe that my experimentation with a performative approach has shown that it is an effective way to convey McADAMS' (2003) concept of an identity being a life story. I was able to include multiple literacies: poetry, as well as both art and photographs in the written version. If the play were to be performed, many more artistic and photographic images could be projected onto a screen as background for the actors. [31]

I found writing the play by turns easy and then extremely difficult. I think it was the act of writing—putting pen to paper after all these years—that I had the most trouble with. In the end, the process was cathartic and fulfilling. By writing my story, I am offering an example of how a "turning point" or "epiphany" in a life story is a major event that can alter one's life completely DENZIN (1989). Lucy GREALY (1994, p.78), in her book Autobiography of a Face wrote about her life as a cancer patient. Her words perfectly describe the impression my accident has made on my life. GREALY notes that she feels captured by her cancer, a "briefest moment" in her life. She feels unable to free herself from this moment, and therefore lives her life in reference to the cancer. [32]

I have been captured. [33]

Acknowledgments

I am grateful to Betty COOPER of Sugarbush Studios for giving me permission to use her photograph.

Notes

1) Our perceptions of who we are now are continually transformed by insights gained each time we tell our stories. These stories relay our constantly changing interpretations of the memories of our past, the influences we feel today as we explore our multidimensional interpretations of our current identities, and our imaginations and visions of our future (BATESON, 2000; BURY, 2001; CLANDININ & CONNELLY, 2000; IRWIN, 1996). Relived and retold as I struggle to rebuild my identity, my narratives of my life today and of my future will always feel the influence of the memory of the accident which rerouted my life (BRUNER, 1994). My stories have, therefore, become an illness narrative. I find that my narratives are forever taking on new meanings as I continually re-interpret my memories of that time (BURY, 2001). <back>

2) Illness narratives have, as mine does, "the absolute certainty of the beginning" (WIKAN, 2000, p.215). This sudden, certain, and traumatic beginning is then forever played out in the narrator's life. Illness narratives become, in their middles and ends, avenues for the ill to use as they confront their illnesses and choose how to respond to them (FRANK, 1995). <back>

3) Reading my stories you will discover that I have responded to my accident by searching for desire, or, as Cheryl MATTINGLY (2000, p.202) describes, for something to "make life ... more worth living." The meaning of my life could no longer be taken for granted; my injury forced me to "address the meaning of illness for ... [my] sense of identity" (MATTINGLY, 2000, p.26). Another way of conceptualizing my narrative as it is presented in this play is as an attempt at repair, an attempt to smooth out the etchings and stains. I hope that by telling my story, I can help others to redraw "maps and [find] ... new destinations" as they "repair" themselves (FRANK, 1995, p.53).

Linda GARRO and Cheryl MATTINGLY (2000, p.1) maintain that by telling my stories, I "can provide a powerful medium for learning and gaining understanding about others by affording a context for insights into what one has not personally experienced." Stories will help those who are close to me—my family, friends, and colleagues—better understand the enormity of the journey I have traveled, the places I have visited, the unique sights I have seen, and the continually evolving person that I am (MATTINGLY & LAWLOR, 2000). Alfred ADLER writes that "memory is a creative enterprise, a metaphorical composition of personal meaning patterned from lived experiences" (cited in MORAWSKI, 2005, p.3).The stories I tell here are creatively fashioned memories, born from the personal meanings I have composed from my experiences during a part of my life when I was in transition. The meanings, recollections, experiences, and memories that I will share here are buried in a particular, especially significant part of my past. They are comprised of the legacies of experiences garnered from a life in flux. The person I was and the person I have become are not the same. I discover who I am. <back>

4) As BURY (2001, p.272) explains, I was trying to " 'normalise' in the sense of keeping [my] pre-injury lifestyle and identity intact." The "me" who my family, therapists, and doctors saw every day did not, at that point, match the 'me' I thought I was projecting. I truly believed that I was the same person that I used to be. Nicola KING (2000) and RIMMON-KENAN (2002) note that after experiencing a major life trauma, individuals can have trouble accepting that they may have to construct a brand new identity and envision a different future, one unforeseeable prior to the experience of the trauma. <back>

5) Insight takes self awareness, which is hard for anyone to attain. After a head injury, self awareness is an unusual addition to one's repertoire, normally rediscovered (or, more commonly, discovered for the first time) after years of reflective self-examination. <back>

6) As I recount my narratives of that time, I see that they show my life during that time develop "as a drama of gradually unfolding awareness" (HURWITZ, 2000, p.2086). <back>

7) Because I was situated within a cultural context rife with "prevailing definitions of health ... and stigma" (ELLIS & FLAHERTY, 1992, p.4), I seemed "different"; the attributes that others observed were "incongruous with our stereotype" of what is expected from an athlete who has competed at high levels (GOFFMAN, 1963, p.3). As a result, I found myself stigmatized. I may have exhibited characteristics due to my injury "that can obtrude itself upon attention and turn those of us whom he meets away from him, breaking the claim that his other attributes have on us" (GOFFMAN, 2006, p.132). <back>

8) My research, past and present, is, for me, yet another step I can take towards reclaiming my voice "that bodily trauma ... [has] caused to be silenced" (FRANK, 1998, p.336). Everyone who has had a life changing moment in their lives wonders: how am I going to fashion a new person from the rubble left after the trauma (GREALY, 1994)? <back>

9) I have learned that my beloved past will never be left behind, even as my current identity is shaped by new experiences and evolving relationships (NELSON, 2001; VERKERK et al., 2004). <back>

10) Identity is always a work in progress, at this point in time, my post accident identity search was especially complex. My life had been redirected by a singular, pivotal event (PILLEMER, 2001). <back>

11) Stigma impacted my subjectivity when I was ascribing personal meanings and understandings to the identities that I performed because stigmatization resulted in a loss of self and the diminishment of other intra-personal attributes (CHARMAZ, 1983). Stigma influenced me as I shaped my constantly changing definitions of my situation and it impacted my performances of my illness narrative (RIESSMAN, 2002). Stigmas may be interpreted by the stigmatized as others' assertions of who "they now should be" (CHARMAZ, 1995, p.658). The stigmatized may find themselves preempting stigma: anticipating reactions from others that they feel are making unfounded assumptions about their disabilities. For all these reasons, Stigma was, and continues to be, a presence in my life. <back>

12) My present, ever-changing identity will always include my memories and stories of the past, not of "how it was, but how it is interpreted and reinterpreted, told and retold" (BRUNER, 1987, p.31). I find that I am surprised, sometimes mystified, but generally satisfied with the person I have become (FRANK, 2000). <back>

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Author

Claire SMITH is a PhD Candidate at the University of Ottawa, Ottawa, Canada. Both her MA and PhD studies are auto-ethnographic studies of individuals who have sustained head injuries. Her MA thesis included artistic interpretations: a focus group interview written as a play, her own story as a short story, and she painted and sculpted the conceptual framework and her interpretation of the data. In her PhD research she is also intends to artistically represent parts of her findings.

Contact:

Claire Smith

University of Ottawa Faculty of Education
145 Jean-Jacques-Lussier
Ottawa
Ontario, Canada
K1N 6N5

Tel: +1 613 269 4159

E-mail: csmit103@uottawa.ca

Citation

Smith, Claire (2008). Performing My Recovery: A Play of Chaos, Restitution, and Quest After Traumatic Brain Injury [33 paragraphs]. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 9(2), Art. 30, http://nbn-resolving.de/urn:nbn:de:0114-fqs0802301.



Copyright (c) 2008 Claire Smith

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