The women in my family knew pain. They understood what it meant to live harmoniously with the kind of pain that comes from a body’s betrayal. My mother’s mother had pregnancy-induced glaucoma and a heart that weakened further the older she grew. She didn’t make it to 75. My mother became arthritic when she was pregnant with me. It never went away, and as I grew old enough to understand the seasons, I would come to associate the rainy season with the shuffle of my mother’s stockinged feet and her wince as she limped. My mother never shuffled during the dry season.
My body and I have never been in agreement — I was the baby who was too small, too frail, who refused to suckle on her mother’s breast. I was diagnosed with pneumonia a few weeks before my first birthday and I spent my childhood being frantically bundled in sweatshirts by my anxious mother as soon as the rains hit. I have never played in the rain — never held my hands open wide while the cold breeze swayed me this way and that. My mother intended to will my illness away. She did not succeed.
I never got over my pneumonia. Twenty-two years later, part of the application process into law school were medical tests that included a chest X-ray. And when I pressed my chest to the X-ray machine, the technician immediately saw my medical history outlined on my lungs. “I see something around your chest area,” the doctor at the law school clinic said as I sat across from him while he perused my results.
I shrugged, “I had pneumonia as a child,” I said.
“Are you sick?” he asked back.
“I’m fine now,” I said immediately. But what I really wanted to say was I’m sick all the time.
“Law school isn’t for the faint-hearted,” the students from the previous year constantly reminded me. But my heart was faint. I was diagnosed with hypertensive heart disease a few weeks after my 16th birthday. A month after, I fell ill with a violent strain of malaria that attempted to take my limb function and my life along with it.
As my mother held me on my hospital bed that night while I trembled from the pain of my body’s violence, she told me a story. “Her name was Jene,” she said while the hospital and the world outside moved about silently. She was the prettiest girl in her village, a mystical land where pain could be passed on to someone else. The king had announced his intention to marry, and interested young women were to model themselves before him in a parade until he chose one of them. Jene desperately wanted to be the next queen, but she fell ill on the day of the parade.
In this village, however, illness could be given to another person to “hold” until the owner came back to collect it.
“So someone could hold your illness while you went to take a test, or went shopping,” my mother said.
“Like a bag?” I croaked.
“Exactly like that.”
Jene’s best friend, knowing how much being queen meant to her, offered to hold Jene’s illness so she could join the parade. A now-healthy Jene made her way to the palace where the king, promptly blinded by her beauty, married her. She became the queen.
“Days rolled into weeks, and weeks rolled into months, and Jene never returned for her illness,” my mother sighed, “and so a new law was made — nobody could hold illness for another person, no matter how much they wanted to.”
“I wish Jene hadn’t done that. I wish there was someone to hold this illness for me,” I whispered.
“I would hold all your illnesses if I could,” my mother whispered back.
I neither appreciated nor gave a lot of thought to Jene’s story and my mother’s whispered promise until I grew older and moved away — not physically, but emotionally, in the way that daughters are wont to do.
Who will take this illness from me now? Who will hold it for me?
The older I grew, the more diagnoses I got, collected like Thanos’ infinity stones. I studied law because I was drawn to the idea that there was something bigger — a set of rules — that could shape our lives, our choices. My illnesses haven’t given me a lot of choices. Instead, they have taken away those choices. In one of my favorite books, the protagonist described herself as a grenade that was going to blow up at some point. She was trying to minimize the damage. I understood that. I know what it means to be a grenade.
Lately, I’ve been thinking about dying — not because I want to die, but because I might have to sooner than I’m ready. “Don’t worry if you don’t hear from me for a few days,” I texted my best friend after my most recent diagnosis. If I die within that time, I’m sure news would get to you somehow, I wanted to add, but decided against it. Dying from a progressive disease like hypertensive heart disease also means shielding the people you love from the possibility of it happening. “I’m just so tired, I want to sleep for 200 days and nights,” I typed instead.
In the thick of my illnesses, I have always avoided the people I love at the first sign of trouble — my best friends, my mother, my siblings. I isolated and gravitated instead towards the people who did not know my medical history, people I could talk to and laugh with while my heart worked overtime to pump blood. In a hospital waiting room, I smiled wistfully at the man holding his lover’s hands tenderly and thought how nice it must be to have someone you love hold your hand during the most difficult times of your life. But when my friend asked if she should come with me to the hospital, I said no. And when my mother drove me to the hospital, I waved her goodbye as soon as she braked by the curb.
In a hospital waiting room, I smiled wistfully at the man holding his lover’s hands tenderly and thought how nice it must be to have someone you love hold your hand during the most difficult times of your life.
But that man and his lover and her hands in his sent me into such longing that I was utterly convinced that somehow, there is a greater love that I have been excluded from. This is a ridiculous feeling at best, because I am surrounded with so much love that I almost never feel the absence of a romantic relationship — I neither crave it nor go out of my way to find it. But there was something about my constant illness that made me succumb to the idea.
My favorite movie is an adaptation of my favorite book, The Fault in Our Stars. In both, the protagonist dies after he has fallen in love, and there is an achingly romantic moment where the living protagonist mourns his death deeply and wholly, like the world is about to end for her too. I wanted that for myself. I wanted my death to mean something to someone. I wanted my death to mean the lights had gone out for a moment in somebody’s life. I wanted someone to grieve. The whole world was going to move on, but I wanted it to stop for that one person.
So I tried to carve my romantic interests at various stages of my diagnosis into a version of that person — an Achilles to my Patroclus. But it never quite worked out. There was the man whom I let drive me into the hospital, but who sat in the car working while the doctor told me my heart palpitations were as a result of hypertension. There was another whom I texted after my pneumonia resurfaced. He texted back minutes later to say “oh my! So sorry. GWS.” I had to Google what GWS meant. Get well soon. I watched as these men observed me helplessly, not quite knowing how to help me, nor the right words to say to make me feel better. Actual comfort, I found, was more likely to come from my friends.
When my diagnosis for hypercholesterolemia came in March, my mother went to work immediately, like she had two decades before. My dietary needs changed immediately. My mother began making two sets of meals, one for me and another for the rest of the family. It has been months, and she still makes two sets of meals three times every day. “I would take this illness from you,” the meals say.
How did I think a love that I did not have could be greater than this? How did I think that her world would not crumble if I died? How did I think that a light would not go out in her life if I were not here?
As I navigate my illnesses, I begin to understand that I am not alone, and I do not have to sit in hospital waiting rooms by myself. I did not suddenly realize that I was loved, but I steadily came into the realization that the love I have is enough.
Each installment of Refinery29’s Single Files column will feature a personal essay that explores the unique joys and challenges of being single right now. Have your own idea you’d like to submit? Email single.files@vice.com.
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