Disability

In a small pâtisserie located away from home and hospital life, I sat and rewrote my story.

I

n a small pâtisserie located away from home and hospital life, I sat and rewrote my story. Sentences fragmented and pieced together on a wicker chair, a small round table holding one of the only few things I could eat there—mango sorbet—because of my near-constant allergic reactions to most food. A laptop screen blinking at me as Amma spoke to the owner in a corner of the small room, most chairs deserted, the glass case of brownies sitting unattended. In that place, I felt a semblance of normalcy I hadn’t felt elsewhere, a place that didn’t know of my most recent depressing blood test results or my visit to a new specialist in another hospital. It was an alcove of safety, a secluded area that stilled in the quiet of the small street and presented three different pastries I was still allowed to eat.

My body never felt like it was mine. To own your body, I thought it meant you must be a cisgender heterosexual person with a body that worked according to your wishes. To move an arm mustn’t require pain as a prerequisite. To move the body mustn’t require a wheelchair and a dizzying ache drumming at the top of your head. I thought there were prerequisites to loving your body that I could never fulfill. Prerequisites that were not prerequisites for anyone but me.

I was born with a disability. A word my mother is still cautious around, sidestepping it to refer to my illnesses whenever she could. A word she fears to use in relation to her child for she cannot see it as anything but a negative thing that darkens my life. There was a growth of tissue in my navel that was connected to my stomach, a thing that oozed blood every day and required near-constant hospital visits to make sure it didn’t turn cancerous. I was diagnosed with other illnesses too—asthma, arthritis, fibromyalgia, complex regional pain syndrome, and other illnesses that coloured the kaleidoscope of my life. Pain sat in the home of my body and made my body its sanctuary. Amma still wouldn’t use the word disabled.

I thought there were prerequisites to loving your body that I could never fulfill. Prerequisites that were not prerequisites for anyone but me.

A body is seen as a broken thing if it doesn’t fit the description of normal. In the body I inhabited, broken was a state of being and normal was an unattainable goal. My mind was a fragmented piece of a once whole thing, it only worked as much as a shattered glass vase does to hold flowers, my thoughts scattered to places I couldn’t reach. My mind and body were disconnected, and I was ill-equipped to deal with such complexities.

A large sloping roof and blinking silver lights spelled the pâtisserie’s name in cursive; a carpet lined the steps inside as Amma held my arm and led me to a chair. There were four tables in the room, a small glass display of brownies and cakes, and a tall freezer of sorbets. I often sat at the farthest corner by the counter, my laptop a constant presence to remind me of the world awaiting me within its body, and Amma sitting opposite me. The room was dimly lit, and I wrote in that shop, away from the fear of any new ailments and the results of my most recent CT scan.

At my first appointment with a rheumatologist, he said I wasn’t supposed to be so sick at my age. I was 16, and after a dozen different tests and doctor visits, ended up on the chair in front of him. I couldn’t walk much since I was in my early teens and Amma had blamed it on my weight. During the periods mottled with sickness, I avoided all food and ate in small amounts when I did eat, a resentment for food building within the walls of my mind as I rapidly lost weight and any love I had for my body with it. On my second appointment with him, I was told I had two autoimmune diseases. He shrugged; it could be worse. I was still alive, after all.

I was four when I knew I was transgender—a boy, to be more specific—and thought everyone around me knew as well. Within the scattered thoughts formed a person I could recognize, like images formed in a kaleidoscope, shifting to accommodate my body. With the realization that I was transgender came the ultimate devastation of the consequences. In my city, transgender people were killed, tortured, left to starve on the streets. In my city, I knew that I couldn’t survive a day as a transgender man.

During the moments I spent in ER as a six-year-old, I only saw the F on the forms and wondered if it would change before I died of some unknown disease. When I starved my body, I only thought of all the ways it could change, not of the pain growing in my stomach. There was a disconnect I couldn’t change, and at that time, I wasn’t sure if I could ever change it.

My body and mind were two separate beings I had spent years trying to mend and glue together. They stood apart on the opposite sides of my existence, one side fighting to keep me alive, the other only wishing for my demise. There was a disconnect between the wants of my body and the wants of my mind. I viewed them as two separate beings.

My body and mind were two separate beings I had spent years trying to mend and glue together.

The first movies I ever watched openly ridiculed transgender people. Everyone in the cinema laughed. I didn’t because that felt like my future. The first news I read of a transgender person was of the murder of a trans woman—raped and beheaded—on the eighth page of a Tamil newspaper. These small clippings of news and the humiliation of our lives on television often reminded me of the path my future would look like, a ragged land that led nowhere, a world that ended the moment I was born. The suffering of transgender and disabled people—our trauma and pain—was necessary to prove that we deserve the most basic of human rights. For every grain that we eat, we must prove our worth to the cisgender able-bodied crowd. Defying the normal was our biggest crime.

I tried to end my life when I was four. The pain and realization of defeat heavy in my mind. I was a character in a book with an ending already decided for him, and I didn’t like the ending. Back then, it didn’t feel like I had a choice in the matter. Back then, the only thing I could change in my story was if I chose to remain alive or fall dead. My mind was a scroll of unsaid words, and my body was a wound that I tightly wrapped in the gauze of uncomfortable clothes every morning. Even liking myself seemed unattainable. Even liking myself seemed wrong; for if I liked what I was, then the conditioning of my life to be like everyone else’s—to follow the cisgender able-bodied ideal of life—was wrong.

I attempted to give myself a chance to live when I turned 18 and started HRT. A year-long battle to get the prescription for testosterone ensued. By the time I received my prescription for testosterone, the pain in my body had reached its peak. Doctors dismissed the pain again until I sat before a pain specialist, who wrote a prescription while explaining that I had two chronic pain conditions. It wasn’t a shock, really. I already knew something was wrong, and no one had listened until the diagnosis.

Every day, I rub the testosterone gel on my forearms, and I am thankful for the life I have given myself, for the goals and wishes I have bestowed upon my future. Even with my incurable ailments, there was a moment of acceptance, and everyday that I choose to take my large oblong-shaped pills, I know I choose compassion and life for myself. There was no specific, cinematic moment that led to that compassion—only years of learning the puzzle of my mind and the maze of my body and attempting to fit them together.

Throughout the years, I had learned to love the parts of myself I was taught to hate. In my queer, trans, and disabled body, I found joy and forgiveness for all the times I had hurt it. In my body, I found acceptance and love. The mirrors weren’t a menacing presence anymore. The clothes weren’t gauze; my body wasn’t a wound. Despite the scorching contempt I’d bestowed upon my body for years, it was forgiving.

In that dimly lit room of the pâtisserie, I sat and rewrote my story. My foot swollen to three times its size. My arms heavy. My back straight and wrapped in pain. A letter from my psychiatrist for gender-affirming surgery—a letter I had spent two years waiting for—in an envelope by my side. Amma at the counter talking to the owner. My laptop blinking at me. I wrote my story.

About the author

Mrityunjay Mohan is a queer, trans, disabled writer of colour. Mrityunjay's work has been published or is forthcoming in Michigan Quarterly Review, Denver Quarterly, Poetry Northwest, The Indianapolis Review, Hayden’s Ferry Review, and Fourteen Hills. He’s a Tin House scholar, Lambda Literary fellow, and a Brooklyn Poets fellow. He was a recipient of the Nella Larsen Memorial Scholarship for the Mendocino Coast Writers’ Conference. He has worked as an editor at various literary journals. He’s an editor for ANMLY magazine, and a reader for Split/Lip Press, Harvard Review, and The Masters Review.