Abstract
Can the two narrative autoethnographic stories I perform here help me to therapeutically deal with the losses they describe? The first story speaks of my PhD defense and its aftermath. I consider the event a loss that is clothed in accomplishment; I work through my feelings by writing about them. The second story describes a medical loss. After attaining the PhD degree I finally acknowledge that I have Dystonia, placing me in the unfamiliar world of the chronically ill. I use therapeutic autoethnography to reflect on both stories, and I ruminate over how the stories are entwined but very different. They have each (re)shaped my identity; I am in the never-ending process of (re)storying my self. Although the artifacts garnered from living these stories may be construed as reminders of loss, I have found a way to minimize the two losses by working with both artifacts together.
I have climbed tirelessly up the academic mountain. As most do while on this quest, I fell in crevasses and faced what I thought was impassable terrain. Reaching the peak was a tremendous achievement. I was finally a PhD! My life postuniversity became mine to fashion. I am surprised, however, that I grieve the loss of the PhD ascent. Although completing the PhD was clothed in the dress of accomplishment, the story I share feels a bit sad. I also shape, construct, and perform a second story. This one alters my perception of what is fair. It speaks of gradual decline, also sadness, grief, and a loss of self. Chin up. Grin and bear it. Haa.
Only recently have I shaken myself: I remind myself that my life is waiting to be what I make of it. Things will be OK. I hope that you can appreciate what I am sharing and (re)living. Sorting through these tangled balls reveals that they both point to living a happy, albeit unforeseen, life. Stay with me. Although I know that I am composed of a multitude of identities, the physical artifacts that are remnants from the two stories of loss I recount here—a piece of paper I intend to frame, and a leg brace I can’t live without—remind me that these two autoethnographical, messy, and therapeutic stories have indelibly marked the identities most visible to others. Here, I mitigate my losses by sharing stories that speak of them. Thankfully, in the end the losses work together and I find contentment.
The following stories are therapeutic autoethnographies (Smith-Sullivan, 2008). Smith-Sullivan expresses that using “therapeutic” inherently suggests a favorable outcome. I agree. I also think that words are therapeutic: They are “powerful and beautiful and exciting and necessary” (Wright, 2008, p. 342). As I craft them, words reveal things that I didn’t know, so when I wrote these stories I discovered much about myself (Richardson, 2001; Richardson & St. Pierre, 2005; Wright, 2009). Noy (2003) remarks that writing may move me “into emotions and actions with an intensity that surprises me” (p. 12). Before I started writing this piece, I was erasing my inner voice, stomping on it, purposefully not recognizing its importance as it told me: “Hey, wait a minute, you have unresolved issues.” I did not, Tamas (2009) reminds me, have it all worked out. So, here I use words to get to know parts of myself. Maybe words will help me to “come to appreciate the personal growth and hidden benefits these experiences [of academia and illness] may bring” (Neimeyer, Burke, Mackay, & van Dyke Stringer, 2010, p. 74). I rely on my written words, albeit in many forms, because for me, as it is for Richardson and St. Pierre (2005), “writing is thinking, … writing is indeed a seductive and tangled method of discovery” (p. 967).
Before I begin, I will introduce you to my PhD study, entitled Journeys of Identity Construction After Traumatic Brain Injury: Elite Athletes Perform Their Stories of Healing (Smith, 2010). In it, I coconstructed stories of the time I spent with four participants who were professional athletes or had represented Canada in an Olympic Games. I wondered: When elite athletes sustain traumatic brain injuries, what do the athletes’ performances reveal about their journeys of identity construction? As the researcher I came “out of the shadows and into the study” because my own story, that of an Olympian who sustained a head injury, was an integral part of this autoethnographic study (Smith-Sullivan, 2008, p. 35).
The Stories
Both of the stories below are messy. I make use of italics and boxes. I include poetry. According to Guba and Lincoln (2005), one of the purposes of a messy text is to “portray the contradiction and truth of human experience … and [the] tragedies of living that existence” (p. 211). By calling upon multiple methods of representation, I hope to “illuminate different corners of understanding” (Minge, 2007, p. 254). I have tried to relay these stories in a manner that is flexible, variable, and provides choice. My intention is that the stories will be shaped by their readers when they are consumed (Chase, 2005).
The First Story: A Loss Disguised as a Tremendous Achievement
I wonder if I am alone in considering that graduating with a PhD may be experienced as a loss? I think that it depends on your state of mind. But, although I have soldiered through a low time, I feel that my academic loss signals a new beginning, a birth of sorts. To assuage any remaining post-PhD depression, I write. When I write, I share stories. On November 18 of 2010, I successfully defended my PhD thesis. A story of that day: I feel sweaty (although I don’t think I am) but not nervous. I silently repeat to myself:
I am prepared
I have rehearsed
I have tried to cover all angles
(known for taking care of everything)
This important moment feels no different than high-level sport. I arrive an hour early, (over)punctual to an extreme as is my wont. I arrange my notes, set up my slides, go to the bathroom. The powers of the defense organizing team have trouble establishing a connection with the external in England. It turns out they have the wrong number. They email him. We finally start forty minutes behind schedule. I am prepared, organized. I am not put off by the delay. I don’t get nervous in these situations. This is nothing.
Nerves for me appeared in my old life: as I canter down the center line on my horse in the dressage phase, as I gallop around a cross country, and as I am all too aware that I have less than a rail in hand when I am in first place heading into the jumping phase. I used to compete on the Canadian Equestrian Team at competitions that included Canadian Championships, the 1994 World Championships, and the 1996 Olympic Games.
The head of the defense gives me lots of time to give an overview of the study. Then the members of the committee ask questions, led by the external. ‘Round they go twice. I then leave the room with the audience, which consists of fellow students and friends since family was not allowed—by me—in the room. After ten minutes, I am greeted by the chairman: “Congratulations Dr. Smith!” My father, who has been anxiously waiting outside the room, produces a beautiful Lily plant. There are congratulatory hugs all around. Because everything has been delayed, most people leave, back to their usual lives. My family and two friends go for lunch. We celebrate over much-needed food and wine.
But that is not all. The celebration continues as we head out for dinner. There are six of us, and we have no trouble digging in to a delicious dinner even after such a late lunch.
Fresh from success,
full of accomplishment.
A journey has ended,
its loss
not yet realized.
Raise a glass!
I sleep in. Not once, not for a week, but daily up to and including Christmas. Then for weeks after. It turns out I am depressed. I am experiencing unexpected sadness and feelings of loss that I really don’t understand. Suddenly, my baby—my thesis—is gone. The journey that has occupied all my time for almost six years has ended. Although the thesis defense was an expected and anticipated event, it nonetheless produced conflicting emotions that contributed to the downward spiral of depression I experienced (Zhang & Fung, 2009). I lay in front of the woodstove, carefully removing the dust jackets from books I had ordered, turning their pages with great care, then replacing the jackets. I later gave the books away at Christmas.
A glowing fire with a sofa positioned before it. I am horizontal. Warmth and a book … I want nothing else.
I knew that I was depressed, unsure of my next step, but why? I finally realized that I was experiencing “a low time,” one brought about by my graduation (Perrone & Vickers, 2003, p. 69). I had assumed such an ending was always a happy, positive event. I expected to be thrilled because I was done, finished. Although returning to school had been a release of sorts for me, I question my reaction to its ending—should I really be experiencing such academic achievement as a loss? I thought I was familiar with loss because I had suffered a huge career ending loss when I fell from my horse at an international competition in 1997 while representing Canada. That loss had, however, been different: a very unhappy, traumatic, and life-changing event (Smith, 2008).
My search for happiness and fulfillment after the long recovery and the endless rehabilitation required for the head injury I had sustained when I fell led me back to school. Then after ten years—qualifying courses, the masters program and finally the PhD,—I had finally graduated, with a PhD. It should have been all happiness, relief—I thought. Instead I was then, and still am now to a certain extent, experiencing sadness, loss, uncertainty. Larsen, McGraw, and Cacioppo (2001) comment on the disagreement among theorists about whether happiness and sadness “can be experienced simultaneously” (p. 684). After living with experiences accrued after graduating with a PhD, I think they can. I agree with Zhang and Fung (2009), who suggest that when happiness and sadness occur together one may be experiencing emotional poignancy. It was (is) this way for me.
Why do I feel poignant? I miss the routine. It was self-imposed, somewhat boring, lonely. It seemed to be never ending. Therefore, I feel its end daily. I miss the phone calls with my PhD friends. I make a point of calling them now, but now we talk weekly. There are no longer daily reports, commiserating get-togethers over comforting dinners and glasses of wine. The losses are felt as we all re-jig our lives, lives no longer recognizable because they have evolved into their current, postdefense forms. Now, we (re)assemble these lives’ skeletons and (re)form them to embrace our new status.
I repeatedly asked myself: Who am I now? Who am I becoming? I have asked myself these questions before; now I pester myself for answers. Similar questions come from others, well intended, but I have no idea what the answers are. I (think) I have arisen from the complete inertia and the accompanying depression that followed my defense. I still beg someone to provide answers to the above questions so that they will stop haunting me. I should be happy to be done, right?
In terms of who am I now, I have added several identities to the infinite and evolving number that already cloth me. To name but a few of the newly added ones: successful PhD defendant, depositor of the final version, now bound, bearer of the title “Dr.” Hah! I think, “What!” Have I really climbed to those heights? Whatever for? A legacy from the days when I rode horses is that I am, and have always been, extremely intrinsically motivated. I have always needed a goal. Healing from traumatic brain injury was (is) a goal. School provided a goal for me, much needed after the complete change I faced after my head injury. But this lofty goal has been met. This begs the question: Who am I going to become next? Has, and if so how, has the PhD journey been “a meaningful self-transformation?” (Noy, 2003, p. 13).
Luckily, I can delay making decisions about my future a bit longer. I have been accepted at a conference in Arizona at the end of January. The conference provides academic reassurance—there are lots of people at my presentation, and there are lots of questions asked afterwards. My happy feelings extend to the conference’s sunny location. After its closing, we rent a house for a lovely, relaxing, warm week in Phoenix. I read outside in the sun, wearing—in January—shorts! I am used to down jackets and scarves. In the 70-degree Fahrenheit weather, there is no snow to shovel, and there are no mittens to wear. I take my laptop outside to write—what a treat!
Sun and warm weather: healing, recovering. This is therapeutic, a much-needed escape.
Trouble is, I have to go back home to Canada. The cycle begins again. This time, it is not only my graduation that grates on me, never letting me go. Because the PhD journey is finally over, I have no choice but to face the chronic disease that had started slowly creeping into my life a long seven years after the head injury, when I had already begun my PhD studies. I call it “the second loss” because until I was finished with the PhD I refused to fully acknowledge its presence and the life-changing impact it will always have.
The Second Story, Also a Loss: Facing Chronic Illness
I have Dystonia. My thoughts, direct, factual, showing no emotion:
Over the past four years, my mobility has become increasingly limited due to Dystonia and now, for the most part, I use a wheelchair. Dystonia is a movement disorder resulting in muscle contractions that can interfere with basic functions, in my case my tolerance for walking distances is greatly reduced (Page, Butler, & Jahanshahi, 2007). The mobility and function of my right leg is very limited; Pont-Sunyer, Marti, and Tolosa (2010) define Dystonia as “involuntary contractions of the leg or arm resulting in twisting and repetitive movements or abnormal postures” (p. 22). Notably, these authors find that a history of head injury can be a cause of the Dystonia I have, which is focal and nonprimary. My physicians believe the Dystonia has occurred as a result of the head injury I sustained when I fell from my horse. Since I finished university, I have been proactively looking for treatment, which has necessitated seeking the advice of specialists throughout Canada as well as in the United States. Thankfully, my physical limitations do not compromise cognitive functioning. My life, when I sought to find new meaning after my injury, was initially uncomplicated. It has, however, become very problematical due to these mobility issues. My house has been modified to accommodate my limited mobility.
I constructed the above explanation in order to explain Dystonia to a research audience. Now, here is a more emotional one, one that was part of my thesis (Smith, 2010):
Am I overreacting now to the Dystonia I have? I don’t think it’s an overreaction. Because …
unfortunately, my balance and motor coordination have declined over the past four years. I have always had, but only visible to those that know me well, slightly detectable balance and motor coordination problems. Now, they have worsened and are related to the focal Dystonia I have developed in my right leg. Dystonia and my resulting limited mobility lead to a brave face most of the time; however, I find myself despondent over this legacy more and more often. What restrictions will my future hold? I have recently started using a wheelchair most of the time. Who will push it when I am old and gray? At these times I find it hard to cope. Why, oh why, after all the obstacles I have overcome, do I need to overcome another? The emotional pain brought upon by Dystonia is somewhat alleviated when I bury myself in writing. This is only sometimes effective.
I sit at my desk in my lovely windowed study and I wistfully imagine taking a break to join nature outside. I could go for a run, or walk. OK, I’ll ride on my scooter instead. Or not. I need someone there in case my aged scooter dies.
Some days, despite the weather outside, I find myself wallowing unproductively in my growing physical limitations. Although I can no longer run, ski, swim, or bike, these limitations somewhat approached being “balanced” while I was writing my PhD thesis. Every day, I am thankful of the timing of this hurdle. Thank goodness that I completed my course work—it feels like eons ago but in fact is only six years ago—and that my data collection was finished over four years ago. I could not have handled these parts of the journey now without enlisting more help than I am comfortable doing.
I wonder how the participants would react to me now? Would my physical limitations now change the impressions I made on them when I was walking? I imagine not so much for those that are many years postinjury. For those whose injuries occurred more recently, I believe that they are more likely to experience new people from their initial impressions of them. These individuals may first see the wheelchair and then they may base their thoughts about who I really am from that impression. I wonder how my research would have changed if I had to accommodate what I am physically able to do now? I felt so passionate about undertaking this research, yet it would now be far less manageable. I could interview using Skype, but then how could I have spent time in the athletes’ home environments observing their body movements, expressions, and actions? I couldn’t have observed how the athletes physically reacted to our conversations.
I enjoy watching the changing impressions I make on other people I meet. They view me tentatively if they know of my injury and have not seen me. If they have seen me, but not in the last couple of years, they are appalled at the effect of Dystonia. First, they wonder if only my physical being has been affected. Then, they always ask if they can help. I used to resist the help that I badly needed, but now I often answer “sure, please!” I am then “pushed around” in my wheelchair. Thanks. Really.
Gradually, over the past six years, Dystonia has crept in. It is now an all-encompassing element that seems to pervade most parts of my life. The PhD journey was a distraction that took over my whole head. I made no time to deal with Dystonia and its frightening implications while I was researching and writing the thesis. Do I accept Dystonia? I will never accept it. Do I acknowledge it? I am learning to do so. This will help me to adjust to the limitations it imposes on me, and my independence that it threatens. Adjustment is “an ongoing process” (Pakenham, 2008, p. 94). In a study involving women with chronic pain, LaChapelle, Lavoie, and Boudreau (2008) found that to these women, the word acceptance conjured up visions of giving up or giving in. It does the same for me.
Finally—I Find a Theory to Explain How I Feel
Writing autoethnographically about my chronic illness for others has led me on a search for a theoretical stance that describes how I am dealing with my illness, something that makes sense to me. Will these negative feelings eventually be less haunting? At the present time, I can’t imagine adapting progressively to my physically limiting illness. But I have found Paterson’s (2001, 2002) model of shifting perspectives on illness. Unbelievably, here is someone who underscores the need for the chronically ill to fluctuate positions. She feels that the chronically ill move continually between two positions: one in which illness is in the foreground, and another in which wellness is highlighted. I feel validated after discovering her theory. Paterson (2001) considers “living with chronic illness as an on-going, continually shifting process in which people experience a complex dialectic between themselves and their ‘world’” (p. 23). There is more recent research supporting Paterson: In 2009, Williamson, Koro-Ljungberg, and Bussing found that Paterson’s model was applicable in their study of adolescents with ADHD (attention-deficit hyperactive disorder).
Currently, I feel out of control of my life. I need to change my perspective about how I will live with this disease because I am beginning to acknowledge that it will continue to play a central role in my existence. To date, I believe that my response to living with Dystonia has not been positive. After reading Paterson (2001), it is apparent to me that my illness is in the foreground. I am focusing on my illness, my suffering. I feel I am a burden. My understanding of my Self at the moment is closely linked to my sick body and the Dystonia that lives there. I believe that regaining control will happen when I can live with my illness in the background so that my “self, not the diseased body, becomes the source of identity” (p. 23). I will be able to focus on positive “aspects of life” (p. 24), although I know that even in this position the management of therapy and medicine to attempt to harness the disease will remain foremost (Paterson, 2001). Thankfully, I am now adjusting.
(Re)Shaping
Finding meaning in life while adjusting to Dystonia has not been easy. Voicing my immediate needs to my supporters happens (often). Do I need to worry about these needs, or should I instead be concerned with my future (Taylor, 2010)? Delmar et al. (2005) explain that I should get to be in harmony with myself so that I can cope with my life. My first loss, actually an accomplishment, left me with the skills that enabled me to find a theoretical explanation for the fluctuating moods that refuse to leave me alone as I face the chronic illness, Dystonia (see Paterson, 2001). Delmar et al. explain that “Getting in harmony with oneself and then coping with one’s life is both a learning process as well as an effort to reconcile oneself with the acknowledgement of suffering, illness and disease as a part of it” (p. 211). Getting in harmony with myself means acknowledging that the two stories shared here are “indelibly wed, inseparably, giving me a negotiated identity and balanced sense of self” (Hurd, 2010, p. 790).
Writing my stories has enabled me to sort out what I am feeling after my PhD defense (Wright, 2009). As I created the first story, I realized what was really bothering me about being finished school. So, I started writing about a greater loss. I am finally aware that the trouble with the PhD degree, university, and the stories accompanying them is that I was able to avoid dealing with my chronic illness. I now recognize that, after the cathartic experience of writing the story about my defense, performing my academic life did not close the curtain on the insidious, disabling illness pervading my life. It is wide open again. Medically, the doctors have not figured out a cure. Becoming adept at research has helped me to find a theoretical explanation for my state of mind. In the end, however, it is up to me. Nobody in the sea of support that surrounds me can do it. It is my life either to squander away and just survive pitying myself, or to live fruitfully. I need to acknowledge Dystonia, although I feel that I will never accept it, and learn how to live my life fully despite its consequences.
Wrapping Up
These two therapeutic autoethnographies (Smith-Sullivan, 2008) have revealed parts of my self—both to me and to others—initially experienced as losses. I feel that I will forever paint the second story in loss, but I have searched for ways to be content despite the Dystonia that is so central in my life. Two artifacts remind me of the two selves that I talked about here. The first one, an unframed degree, is hidden; I must make my way over to a far bookshelf to find it. The second is a brace that covers my entire right leg. It reminds me constantly that I have a chronic illness. Without it strapped in place I am afraid to walk. Both artifacts combine to dictate a life that suits me just fine: sitting at my computer, writing.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Social Sciences and Humanities Research Council (SSHRC) funding in 2007 and Ontario Graduate Scholarship (OGS) funding in 2004, 2005, and 2006.