In preparing for this paper I read Susan Wendell’s piece entitled, “Toward a Feminist Theory of Disability,” and I found it to be an accessibly enriching source in which I could refer to throughout my readings on personal narratives. Her article is almost candid in its delivery and consequently a refreshing alternative to the wordy explanation of medical theory. To begin, I think it’s noteworthy to quote Arthur Frank, author of At the Will of the Body, as a means of establishing a platform for the paper: “What happens to my body happens to my life”(Frank 13). This simple yet precise statement registers this paper among personal narratives that fall under the heading of “life writing”(Couser 12). Though in the case of my own “life writing,” I claim the authority to place it within the context of what Frank calls the “quest narrative.” In his book entitled, The Wounded Storyteller: Body, Illness and Ethics Frank explains the concept of the quest writer, “The quest narrative affords the ill person a voice as teller of her own story, because only in quest stories does the teller have a story to tell. Quest stories meet suffering head on; they accept illness and seek to use it…the quest is defined by the ill person’s belief that something is to be gained through the experience”(Wounded 115). Though I should make it clear that I aspire for my own narrative to read as a quest, but as my journey is just beginning, I dare not make such presumptions yet.
I never knew her personally, nor did I know of her work before my disability studies class, but I certainly feel like I know her now. Lucy Grealy’s book, Autobiography of a Face has had a profound affect on me. I feel like she has penetrated the crevices of my brain with her honest confessions of what it’s like to be “sick.” Her words revealed a tormented soul—a soul, which I was certain I had met before. I discovered the very same “anguish” a year ago during my plunge into the realm of disease. I am comforted to know that I am not alone in my struggle to make sense of who I am now that I have a disease. Perhaps it was her haunting personal account of pain, fear, anxiety and inadequacy that I felt undeniably drawn to. Though, it’s hard to describe this inexorable desire to peel away at the raw and exposed depiction of her narrative. I couldn’t resist the “knowing.” I felt as though she was an extension of myself at times, as if she were rewording my own frustrated confessions. Her story uncovered truth to me. By displaying her honest pursuit of the truth behind disability, she has reached me at a spiritual and personal level. I only hope I will reveal such grace in my own memoirs.
This paper will present contextual information of my emersion into the disability culture by offering my own stories coupled with Lucy Grealy’s supportive passages. The paper will explore the “medical narrative” as a tool to examine the medical and social paradigms at work within the personal accounts of deformity and illness. I believe that my story is an interesting marker for the transition of the “temporary abled” to the “disabled.” And therefore I think the union of both Lucy’s experience and my own will provide a fluid description of the diagnosis of a disease (invisible), to living with the disease (visible). I intend to discuss the parallels between Lucy and I by informing the commonalities with Susan Wendell’s positions.
“Sometimes the briefest moments capture us, force us to take them in, and demand that we live the rest of our lives in reference to them” (Grealy 78) This is perhaps one of the most pertinent phrases of Lucy’s book, as for me her entire experience demands this conscious presence. Her experience is enriched with this visceral awareness that creeps into every cell of my body. I too, had an acute perception of who I was, at the very moment the ground shifted beneath me. The moment when I became so aware of my relation to my internal and external world was the very moment when I felt that relationship abandon me. I noticed its absence, and I believe I have been living in reference to that moment ever since. This experience was extremely physical, which has always fascinated me. I think the moment when I learned that I had a disease, was the most heart breaking disruption of my life thus far. The following moment began at the University of Pennsylvania, on the eighth floor, in Dr. Kevin Judy’s office, who eventually became my surgeon for the first surgery. (My evaluation with him was approximately one week after my experience at the ophthalmologist, and my second neurosurgeon appointment that day.)
Well to begin he was all of five foot five, a wrestler’s build, stoic and pompous. He sat down across from us and began with, “what do you know so far?” My dad answered, with a testosterone tone of voice, establishing that he could play this macho role too. This was obviously not going to be as pleasant as our first encounter with a Neurosurgeon. My dad recited almost the exact speech that he had earlier that morning. He made sure to highlight his newfound medical vocabulary. The doctor let us speak, occasionally glancing over at me without compassion but rather out of curiosity, as if wondering if the tumors had eliminated my voice. My dad recounted the last week’s events, and our diagnosis per the first doctor. He mentioned keywords such meningioma and neurofibromatosis; the latter being the condition that the previous doctor had believed me not to have. I need to repeat this because when my dad had concluded his speech, the doctor paused and said, “Well, you do have Neurofibromatosis Type II.” He paused again only to figure out where he should go from there, and then stood up from the desk and threw the MRI onto the lit display. “Here is the other tumor,” and he pointed to a speck, almost completely undetectable on the right side. This would mean that I possessed the trademark acoustic bilateral. Some people affectionately call these moments in life, “dooms day,” and in fact while I write I am aware of that blind sided feeling that we all felt in those moments that followed after he pointed out the other tumor. He sat down, and began to shed light on the condition, but he seemed fully aware that none of us were listening and that my body had begun to shake. He looked over at me and asked if I was all right, and I nodded because I knew if I opened my mouth a wale of pain and anger would collapse the very foundation of the little room. I grabbed for my water bottle, and began to slowly gulp as if the water would help the lump sink deeper into my throat. He then explained that we could address the NFII next time we met, but for right now, we had to address the very serious issue of the large meningioma pressing on my right frontal lobe. He quickly steered everyone in the direction of the risks involved in my current condition and that it was imperative that we have it removed soon. He reiterated again that the NFII could wait, but this could not.
Knowing that not one of us could swallow any more pain in that visit he advised that we his see his secretary to schedule a follow up soon. As we all stood up, he looked at me again, now standing in front of me and said, “Are you ok?” I nodded again and smiled with every muscle I could command in my face, and he leaned over and put his hands on my head. He began to knead his hands all over my head, and I asked what he was doing, and he simply said, “Sometimes the tumors can push through the bone.” “I might have horns to?” I asked sarcastically, he smiled and we all exited the room.
I could barely keep myself upright on the way out of his office. We walked to the elevator. I didn’t want anyone to touch me or even look at me. I didn’t want comfort, I didn’t want to discuss what had just happened, I didn’t want to look at the positive sides of the visit, and I just wanted to wake up from this nightmare. We rode the elevator, and I think my heart felt heavier than the pressure that weighed on my chest as we descended down to the lobby. There are so many thoughts that can gather in the crevices of one’s brain when one is diagnosed with a disease; when one is facing a “life sentence” of tragic proportions. How am I supposed to react, how am I supposed to be acting? I am angry and I am resentful—of whom or what I don’t know. When the doctor stoically looked across the desk and stated that I have this disease, I shut off—or turned on, not really sure how you would classify it, but something violent happened. At the conclusion of the consultation I descended down in the elevators, aware of my parents presence but not very aware of my own. My teeth began to shake and my body followed. My eyes poured puddles all over my face, and all I wanted to do was scream “FUCK,” and wale on my doctor’s stoic face. Anger like you have never felt, anger so out of control I don’t even remember my thoughts, it was purely physical. I shook so badly with what felt like ice running through my veins. My vision was blurred with tears and my throat now shuddered as it struggled to arrest the metallic tasting lump that was trying to make its way up.
I didn’t know where I was going, I was just walking and I was cold. My mind had lost control of my body, they were disconnected, or they were connected by the delicate strings of sanity because I began to convulse with so much anger and sadness that I no longer cared where I was. I no longer cared that the lobby before me was littered with people dealing with their own problems, tragedies and dramas. I only knew that the man, the doctor with whom I had just spent the last hour, stole my life away from me in one sentence. My dad had caught up with me, and he was himself shaking with pain. He held me while I tried to get out how angry I was, and how unfair this was, and he couldn’t respond; he couldn’t say a word to me. No one could say anything to me, no one knew what it meant to hear that you have a disease that will cause your brain, your spine and various other body parts to grow tumors the rest of your life, that you will lose your hearing and various other hideous realities of the disease. No one could offer me any comfort, and truth be told I didn’t want it either. They helped me outside, where I paced back and forth without them, squeezing the last drops of water out of the bottle. Finally the car arrived we got in, and I shook the whole way home. I didn’t want to talk; I just wanted to go home. I felt so disgusted with everything around me. I felt as if everything and everyone had turned on me. I felt so out of control with pain and anger that I continued to pant and cry with every inch of my body.
This was the initial moment when I learned that I had a disease. The harmony in my life was disrupted when I learned that my body had been harboring a genetic mutation for decades. Unknown to me, the cells in my brain had begun to build a tumor the size of a tennis ball that was impeding on my optic nerves and placing me in grave danger in the process. There was, and still exists the sense of betrayal, as if my body had been secretly hiding this mutation from me. It was as if my mind and body had been disconnected. I had been blind sided by a faulty gene living inside my cells. I had no idea I was living with this mutation, and I almost felt abandoned by my body when it presented me with this. There are certain ideas that I had about disease, and I believe they all stemmed from my experiences with cancer: as with cancer there is chemotherapy, and with NF II there is nothing. This reality was the hardest to endure, and I must confess still is. I suppose when I learned of my disease and its long inhabitance within my body, it destroyed all the previous notions that I had about disease in general. Everything I knew about my body, my mind and ultimately my soul was altered. “When I was disabled by illness, I experienced a much more profound alienation from my body. After a year spent in bed, I could barely identify my body as my own”(Wendell 267-8). This perception of the body begins to impede on your views of health, image and ability. As if to suggest that at the moment when you are diagnosed with a disease you are no longer in control. It is this very idea that perpetuates this perception of normal as synonymous with control. “In a culture which loves the idea that the body can be controlled, those who cannot control their bodies are seen (and may see themselves) as failures”(Wendell 269). When I was diagnosed, my entire world collapsed with a retching sense that my body had failed me. I can remember sitting with my mom in the living room of our house, trying to process the previous twenty minutes, in which an unassuming ophthalmologist had uttered the words brain tumor.
The MRI wasn’t for another two hours. My mom and I made all the appropriate phone calls, starting with my dad to my uncle. My dad, along with a few other family members reacted with an out-of-character anger towards the ophthalmologist–who was simply just the messenger. They were outraged that he had the gall to turn to their niece, their daughter and tell her that she had a brain tumor; the absolute nerve was beyond them. My dad jumped in the car, and drove an hour down to the shore, to my mom’s where he found us sitting in a chair built for two, in silence, with the TV on for background noise. What transpired during those moments of silence? What did we think about? What was she thinking about? The absolute disorientation of the situation was exasperating. I don’t even think I had the clarity to question why. It was just happening, it was an unyielding storm that I had no control over. The urgency kept the absurdity at bay, and the paralyzing fear present and alive in my chest. I felt so detached, so blindsided from the words brain tumor that everything else in my reality dissolved in the acidity of pain. I sat in silence for two hours completely unaware that any time had passed, completely unaware of where I was and completely unaware of what was to come.
I wanted desperately to hear that it could be fixed, that it was simply something I had one in the past that had caused the illness—I wanted to hear that if I stopped drinking so much caffeine, stopped the occasional cigarette, did some yoga and went to church that I would be fine. There was this overwhelming drive to learn what my role was in this process. I was certain that within the current pulse of mainstream “health,” I would find the cure to my disease. I immediately figured that there had to be a tea, a meditation, a guru, a religion, or lifestyle that would be the vehicle for health—and ultimately my redemption. As I was certain that I did this to my self. The disease was a weakness, something foreign that I had picked up along the way, probably doing some sort of abusive activity. But mainstream culture had to posses the formula to make me well again, I thought. It had to, the health and wellness industry was so large, what else was it doing with its expansive monopoly? Wendell illustrates my thought process by telling of her friends’ curiosity of “what [she] had done to “make [herself]” ill,” and she ultimately comes to the conclusion that it is this line of questioning that is perpetuating the notion of control (Wendell 269). “…Our cultural insistence on controlling the body blames the victims of disability for failing and burdens them with self-doubt and self-blame”(Wendell 269).
“Horrified that people might feel sorry for me, I also knew that I possessed a certain power. After all, people noticed me … If this type of attention wasn’t always comfortable for me, it nonetheless further defined me. Most people struggle all their lives to avoid fading unnoticed into the crowd, but this was never my concern. I was special. Being different was my cross to bear, but being aware of it was my compensation. When I was younger, before I’d gotten sick, I’d wanted to be special, to be different. Did this then make me the creator of my own situation?”(Grealy 101) This passage speaks to so many issues. The first being, stigma, and enduring the gaze, albeit sympathetic, for Lucy it was a source of recognition. This was a recognition in which she transcended the negativity and interpreted the gaze as attention, nothing more, and nothing less. Though she expresses frustration and pain towards the act of stigmatization, she counteracts it by claiming it as her “compensation.” She recognizes the power of her position, as defined by her acute social awareness that stems from her disability. Her “inside track” to this unique consciousness is what sets her apart. The acknowledgment of the unpredictability and the acute fragility of life are more apparent to her than to those outside the realm of the disability culture. I know a little about the delicate nature of life’s suddenness. This awareness is extremely visceral when you are placed on that so-called, “inside track.” I struggle with the question; if given the chance would I trade this “awareness” in for the chance to be on the outside again, and the answer is undeniably, yes. It is this marker, or stigma that I resist. I will be written on. These markers of disability will define me, both visibly and invisibly; I will bear this identity as constructed through social norms. My body will be placed at the mercy of the public eye, and therefore subject to various dogmatic models of “normalcy.”
Lucy endured the same objectification so intimately, and I believe that it’s through her revealing account of what it was like; the reader can experience a true epistemological approach to the origin of stigmatization. Her story reveals her scar as a marker, a map that indicates the moment when she “lost control” of her body (Wendell 267). Her disease has written volumes across her face. It is a marker, a moment, a eulogy, a memoir and a narrative within the shallow fold along her cheek. Her body has been written on, but its visibility penetrates far deeper than the scar itself. The scar has written on her existence. She has been redefined by this place in which memories are buried, emotions are smothered, and dialogue is suffocated. According to the “construction of normalcy,” her scar now signifies her inability to attain or maintain anything other than abnormal, or disabled. She is now seen under the shadow that her scar casts. Unable to escape this appearance she searches in desperation for masks of various shades of normalcy. As she shares so candidly in this passage, “My only clues were from Halloween and from the winter when I could wrap up the lower half of my face in a scarf and talk to people who had no idea that my beauty was a lie, …To feel that confidence without the threat of exposure—how could I want anything more”(Grealy 157)?
“Something more powerful than being a different body is at work. Suffering caused by the body, and the inability to control the body, are despised, pitied and above all feared. This fear, experienced individually, is also deeply embedded in our culture”(Wendell 267) Though what’s interesting in Wendell’s statement is her conclusion that stigma is derived from fear. I can attest to this fear, as I too will exhibit a visible marker not unlike Lucy’s, the only difference is that I have time to prepare its reception.
As Lucy collides with the social construction of normalcy, the reader is alerted to the role of the medical model and its affect on the young woman. “Maybe life was going to be all right after all. Maybe this wasn’t face at all but the face of some interloper, some ugly intruder, and my “real” face, the one I was meant to have all along, was within reach…reaching my hand up. I covered my chin and jaw, and yes, even I could see that the rest of my face really was beautiful. As soon as I took my hand away, the ugliness of the lower half canceled out the beauty of the upper half, but now this didn’t matter so much, it was all going to be “fixed””(Grealy 157). This inflated sense of confidence is a direct result of the insertion of the medical model. It was operating in her life more than any “abled” body could fathom, as her relationship with the promise of a “normal jaw line” would last throughout her life. Any human being can relate to her desire to be “fixed,” but it’s this paradigm that forces us to see the social constructions at work in her life. In a world that places such emphasis upon beauty, Lucy’s rejection of her body is completely symptomatic. I understand her plight, and wished her life were easier. I wish that she didn’t have to endure the gaze. Her story is tragic, but a lesson is scrambled with the lines of her text, nonetheless. Perhaps not completely evident to me at times, but it was there, I know it. The destructive presence of the medical model interrupted her sense of who she was. She says in the last page of her memoir, “ I experienced a moment of freedom I’d been practicing for behind my Halloween mask all those years ago. As a child I had expected my liberation to come from getting a new face to put on, but now I saw it come from shedding something, shedding my image”(Grealy 222). This image exists and is fueled by this social construction of normalcy, which is rooted in the medical model, which is defined as the desire to “fix” someone. By resisting and challenging this construction we can only hope to disrupt its vicious affect upon the disabled culture.
Couser, G. Thomas. Recovering Bodies–Illness Disability, and Life Writing. Madison
The University of Wisconsin Press, 1997.
Frank, Arthur W. At the Will of the Body: Reflections on Illness. Boston: Houghton
Frank, Arthur W. The Wounded Storyteller: Body, Illness and Ethics. Chicago:
University of Chicago Press, 1995.
Grealy, Lucy. Autobiography of a Face. New York: Houghton Mifflin Company,
Wendell, Susan. “Toward a Feminist Theory of Disability.” Disability Studies Reader.
Ed. Lennard J. Davis. New York, Routledge, 1997. 260-278.
I look forward to working with you next quarter as you set out on your memoir! This essay is a sophisticated synthesis of theoretical reading and personal narrative and the issues it raises are both profound and nearly innumerable. The power of language to “fix” or paralyze us before the determinative or medical gaze is so utterly overwhelming! I think personal narrative is really the only fit medium for analyzing this. Your scene here with the shorty doctor is both “true” and fabulously written. I felt like I was there! (And I was…)