Writing the Silenced Body

There is a daunting scarcity of illness narratives and even fewer fictional texts that include a disabled female heroine in Arab literary works. Disability features in various texts as a subtheme, part of the narrative but never the narrative itself. As a scholar of literature with some research experience in the field of disability studies, I have always struggled to find such works, including memoirs, that feature disabled protagonists. I was diagnosed with MS as an undergraduate student. During the period of my dissertation research, I was often disappointed and felt isolated and lonely when I could not find companion texts that spoke to me about disability from the perspective of Arab women. Born to a Palestinian mother and a Kuwaiti father, I grew up a hybrid, always occupying a space between two identities. When MS entered the picture, I realized that I would be fluctuating between periods of disability and “able-bodiedness.” My body would not adhere to one identity. I was not always able-bodied, and I was not always visibly disabled. As I pursued my graduate studies, my MS progressed and so did my desire to find a thread of hope—a place where I could find fragments of myself.In her phenomenally accessible Living a Feminist Life, Sara Ahmed borrows from Donna Haraway’s notion of “companion species” to coin the term companion texts. She points out that we need to find our companion texts to survive: “A companion text is a text whose company enabled you to proceed on a path less trodden. Such texts might spark a moment of revelation. . . . they might share a feeling or give you resources to make sense of something beyond your grasp” (Ahmed 2017: 16). My companion texts were Audre Lorde’s Cancer Journals and Nancy Mairs’s Carnal Acts. These feminist women writers and scholars gave my life a sense of hope, a sense of meaning, and a sense of belonging—a revelation that I was not alone, that my existence within my body was not altogether different from other women’s experiences of their bodies.While I was grateful to have found these writers, what was—and still is—missing was a more Arab experience of disability in literary works, fiction and nonfiction alike. This point has also been highlighted by Abir Hamdar in The Female Suffering Body, her monograph on the disabled female body in Arabic literature. Hamdar (2014: 3) asks: “Why does Arabic literature cast a veil of silence . . . over female physical illness and disability? . . . Even when the Arabic novel and short story does [sic] represent female illness and disability, they remain spectral, barely visible presences at the margin of the text.” Hamdar provides many explanations for this, but the one that stands out to me is that “Arab culture continues even today to valorize the health of women as a signifier of the health of the family, the society, and the nation as a whole” (130). Women’s bodies are regarded as part of the collective, not individualized, and any lack may be interpreted as a moral failure.In the course of my training in literary studies, I explored many texts, including representations of madwomen in literature, and realized that writing the disabled female Arab body was necessary. Many fictional texts explore mental illness and madness, but hardly any revolve around the Arab woman’s disabled body. This was a body that had been silenced and marginalized, and I felt that it was part of my academic duty to bring it to the center. My personal life was now calling for a revolution. I began writing Notes on the Flesh, a collection of stories that fall between fiction and nonfiction.The stories reflect, in part, my own experiences with disability and trauma, while the rest reflect various experiences of disability, some of which are explicitly gendered. Set in Kuwait, these stories center on characters who have failed to perform normalcy. Their voices are weaved into the narrative to bring disability to the forefront. The experiences of disability and illness are diverse, yet they have the same stigmatizing effect on the individual. These stories are written on the flesh, on the body, and from the body.Notes on the Flesh has received some scholarly attention but remains uncategorizable for most scholars. Some of the questions I get asked include: Is it fiction or nonfiction? Does it give a sense of an ending, provide closure to the illness narrative? What happens next? I find it difficult to explain that there is no set plot, no linearity within an illness narrative, and that there are no answers. There is no manual on how to write an illness narrative—especially from an Arab, Middle Eastern perspective.Another critical question that often arises in academic conferences I have attended is: Why write in English? I cannot say that I see myself in the position of a postcolonial writer, because, in my case, English was not the colonizer’s language. Kuwait, my home, is a place where two cultures mixed. Through my twelve-year-long international (American) education at school, where I spent more than 80 percent of my day, English became the known language—the language closest to my body. As an Arab woman writer, I lived under sociocultural circumstances that included an adoptive culture and language. Unlike immigrant Arab writers, or Arab Anglophone writers like Ahdaf Soueif, Fadia Faqir, and Diana Abu-Jaber, I cannot say that I was forced into exile. In my case, exile came from within my body. Raised as a cultural hybrid by parents from different ethnicities, I found that my body later refused to adhere to a strict category of normalcy. Instead, disability entered the picture. At the age of eighteen, I battled an illness that left me paralyzed at times, struggling to speak, to articulate, to move, and my senses were lost. What was left was language—and even language failed to express the disconnect between my mind and my body.Writing became a means to heal, a place where I constructed and reconstructed parts of myself and the language I used to navigate pain. Fiction allowed me to remember, to uncover trauma, to open up a space where memory and healing went hand in hand. Rather than recover any sense of “authentic” self or language, my work suggests that when a woman writes about herself, she is simultaneously writing and unwriting what has been previously written by patriarchal discourse. Writing then becomes an important process. It is not the destination or the conclusive and definitive self that we arrive at. For me, writing this collection of stories became a method of interpreting and critiquing the myth of ideal bodies and authentic selves. The lack of closure, the lack of ending, upset many of my readers. There is a seeming betrayal of Arabic and narrative linearity, and of what it means to be an “Arab woman.” All these issues, I believe, divert attention from the larger issue at hand: women writing their bodies and destigmatizing disability.There was a new experimental surgery. It was not meant to be performed on all patients, it was reserved for cases that really needed help, and people who could actually afford it. The surgery was performed by an Indian doctor who claimed to have found a cure for illnesses like cancer, MS, epilepsy, and other autoimmune diseases. He was, in a sense, performing it illegally. I was desperate for any cure at this point, and like all chronically ill patients, I would have done anything for a cure, even if it was a pseudocure. I was acutely aware that this surgery would be risky, but I chose to blind myself to anything other than the distinct hope that there could be something, anything, that could save me. I found the doctor after an intensive Google search. Ghazi and I argued about my decision to experiment. One day, the phone rang. The doctor spoke to me about how much the surgery would cost, and he urged me to think about it very seriously.“There are no other options for you. You are very young, and could possibly recover. You have one shot at life. If I were you, I would understand that my options, in Western medicine at least, are very limited. The West does not want to cure cancer or MS, all these diseases are politicized. You must take charge of your life. Don’t worry, you are in very good hands,” he insisted.Dr. Parvesh was certain that stem cells were the answer to everything incurable. I didn’t even really understand what stem cells were. My research indicated that stem cells meant younger cells, cells that were fresher, better, more capable at fighting disease. There was one slight problem. Cells could multiply. I was a literature major, and I didn’t understand the mechanisms behind this multiplication.“Cancerous cells, Sarah. Cancerous cells. It means there’s a bigger risk here,” Ghazi explained, saying that he had done his research.We were only twenty-three at the time. We were hoping to start our lives together, and yet there was a threatening life or death situation. We argued about the possibility of cancer. We fought about quality of life versus quantity of years.“I don’t really care,” I said bluntly.“So you’re suicidal now? You want to just . . . die?”“No, I want a proper life. I’m tired of being like this. I’m not even thirty. Who cares about how many years I live?”“That’s suicidal.”“That’s not. It’s not that simple. Again, you never really get it.”“How can I not? I live with it every day.”“There’s still a huge difference between you and me. You don’t suffer half as much.” I said these words carefully. It was the first time that I had voiced my alienation. It wasn’t his fault I felt this way.“I can’t lose you. Please don’t do this. You’re giving up the fight. I didn’t take you for a quitter,” Ghazi responded.Finally, we decided that I should approach my parents with my decision. I wanted to inform them, I didn’t want an opinion. My parents had continued to be in denial about my health. My mother, when pressured to listen to my logic, said that she needed to speak to the doctor. She wanted to hear it from him instead.“Money won’t be the issue. I will sell everything I have, if it means buying your health. Stop worrying about that habeebti,” Mama said.My eyes were brimming with tears. I had support. I had at least secured the financial support. There was no way I could afford this surgery otherwise. My mother was not rich, and neither was my father. I was not sure how she would afford paying for my surgery. I didn’t want to burden them any more than what they were already dealing with.“I promise I’ll save money, I’ll pay you back, I won’t forget this ever,” I blubbered.And so it was that my surgery was done in a very remote area. It was done in a deserted hospital in an Indian city. Ghazi and I went together, because neither of my parents were willing to be there for it. We packed one bag with both of our clothes and a few novels to read. Leo Tolstoy’s Anna Karenina was a favorite of ours. Anna’s character fascinated us, and her affair with Vronsky reminded us of forbidden loves. Even Russia had its conservativeness. So it wasn’t just us. Can you control who you love? Can you always do what is considered right by the eyes of society? Anna couldn’t. But then again, Anna’s story was a tragedy. Were we the same? His mother and father had married. He was just not sure how his father would allow him to marry a Bedouin girl, a girl from a tribe, and worse, a girl who was struggling with a disability. His father, being a medical doctor, believed that chronic illnesses and disabilities were a burden, a curse, and that most “normal” people would not be able to live intimately with an ill person. He worked with patients every day, and yet, he was phobic of all illnesses, all degeneration of the body. He obsessed over Ghazi’s health. He had lost his wife to cancer, and he couldn’t bear the thought of losing Ghazi. According to Ghazi’s father, cancer was definitely genetic, and Ghazi’s mother had passed on the cancer gene. It was just waiting to make its dramatic entrance, seize Ghazi’s body, and take him back to his mother’s womb.Although we knew that his father would never support us, we didn’t care much for it. We were simply teenagers, trying to make sense of the world around us, and we had decided that we would never think about marriage or real life. We would take it all one step at a time. I was starting to feel hopeless and helpless, but I was more immersed in my failing body than in the prospect of a failed love. My mind could only handle one loss at a time.But if I thought our love was tragic, nothing could have prepared me for the surgery that killed me. I was killed and brought back to life. The theory was, in simple terms, that the body’s immune system had to be reset. Cells would be extracted from my body, from bone marrow, from my blood, and later infused back into my system. But not without the risk of death and not coming back to life. Of course, there was an agreement to sign before anything was to happen. I had to sign that I was not allowed to sue the doctors and that I could not turn to any medical organizations for assistance. This was completely on me. There was a lot of legal jargon written, which I admit, I didn’t read. I took the pen and signed, eager to start a new life. Eager to be reborn, eager to have the better and healthier body I wanted.“No, don’t sign,” Ghazi argued, the second the pen was in my hand.“I have to,” I answered as I scribbled my initials.He was afraid, I knew that he was, but he tried to remain as composed as possible. He wanted to pretend that everything was under control. When they started prepping me for surgery, we were surprised that it would not be in a very sterile environment. There was no operating room. It was an outpatient clinic. Ghazi glared at me and then at the doctors. I shrugged my shoulders at him, helpless, refusing to entertain the thought that this could be dangerous.When the surgery started, I was told that I would remain completely awake. Dr. Parvesh and his two assistants hovered over me. One of them was not dressed in a lab coat, and I wonder now if he had even washed his hands. He was old and looked very gruff. The first part of the surgery included the insertion of two huge needles in each arm, and Dr. Parvesh attached me to a machine that was supposed to separate the blood cells. I felt as though I was being crucified, arms stretched out, attached to a machine, not allowed to move at all. Any movement would only cause the needles to dig in deeper. I tried to remain as strong as ever. My muscles started to ache about half an hour later. Slowly, I began shivering. As I was being emptied of my blood, literally being sucked dry, my body temperature dropped drastically. Ghazi noticed my blue lips and nearly swooned.“You’re not okay, don’t lie to me, you’re not okay,” he said.“I’m fine,” I said through chattering teeth. I couldn’t stop shaking. I wanted to stop shaking so bad, but I couldn’t. Dr. Parvesh only piled more blankets on me. They were green, wooly blankets. Blankets that smelled like death. Rotting, everything was rotting. I could taste metal in my mouth.In the next four hours, I continued to suffer. I lost my ability to see, and could barely hear what was happening around me.“I can’t see! Ghazi, I can’t see!” I screamed.“She can’t see! Do something!” I heard Ghazi scream at the doctor.“No worries, it’s all part of the process. She will be fine,” Dr. Parvesh’s assistant replied.“She’s dying,” Dr. Parvesh said, slowly, as though I couldn’t hear him.“What?!” Ghazi was losing it. I couldn’t see him, but I felt his body shift from my bed, heard his footsteps as he crossed over to the other of the was, in My system was I began to see and there was no It was nothing like the stories I had This death was not I was to I simply wanted the to I was and all I wanted was to I thought of I thought of and then I told that I was for about before I was The doctors had to to get my to start In the I have no memory of death. I don’t and I don’t to I only being for I was back, Ghazi was next to me, shaking with in his and with tears. He was calling for and save Please don’t take her I’ll be I don’t take Ghazi was a and I felt a few times, my eyes as my came Dr. Parvesh’s assistant at me, while Ghazi over to my with He his hand on my words from the I might have to you to You are this so much Dr. Parvesh said as he me with something will not I don’t you one When will this be a more The part is still As new as a cells will be her body will be You should this always it as her new Dr. Parvesh said it I I wanted the needles you’re nearly Ghazi answered me, through looked at him with He was the only one who could speak on my the doctors would listen to I needed to But he glared at me refusing to Ghazi make them I can’t do it I don’t want it I Don’t do this. You wanted this, and we will get Stop he two more of me in at the and to me, to the pain. I done all of But I They the needles and in the the the one that had the new cells that would be into my was and I I thought of and I what of If he did had he me only to bring me this a a or was I to the answer was, I didn’t I felt from the I in at the When I I had of blood, and into my Ghazi left me a few after the surgery. He couldn’t back to the way were between us. reminded him of reminded him of pain. I was but he couldn’t see the pain. There was only this is all out of love for you, you have to understand this. It was so I don’t how to move he He was reminded of the loss of his mother, and he thought that his father might have a His was to never get to and because it not just the body, but the Ghazi wanted me to understand that he was that he wanted to and a and that he needed to I didn’t and I couldn’t the he had 2017

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• Living a Feminist Life

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