These Metaphors, My Body

I find it easiest to describe my chronic illness in metaphors. When asked how it feels to hold a chronic illness within my body, I perform a magic trick of words. With my words, the lights dim, the smoke machine whirls to life, and I become the wizard hiding behind the velvet curtain. Pay no mind to what you think you see. Look how I lay the yellow bricks with my words. See how the flying monkeys lay still at my command. Whenever I try to state it plainly, stripping it of all adornments and illusions, the words become a dry rag in my mouth. Every syllable comes out diluted and muffled. The polaroid in my hand develops backwards. The portrait I paint only obscures the underpainting. The words, said over and over again, chase their tails and come up with air.

Before I had a diagnosis, I had believed in the simplicity of language. I had believed in the power of a name. In all the horror movies I had watched as a young adult, the thrashing and foul-mouthed demon could only be exorcized from the young girl’s body once its name had been spoken. No matter how much holy water or fervent whispered prayers dampened the air, only the unbearable weight of hearing its own name could expel it completely. At a sleepover when I was a child, I remember being shoved into the small hallway bathroom while a group of barefoot, pajama-clad girls held their ears to the door outside. I had been dared to say a name three times in the mirror. Sleepover rules were cruel and binding. Even as my muscles twitched with the urge to bolt, I stood with my hands on the sink basin to steady myself as I tried to say her name. Though I couldn’t make out the mirror or even a glint of porcelain, my imagination was able to conjure a fully formed apparition just from the name existing in my mind. Bloody Mary…Bloody Mary…I couldn’t say it a third time. In that dark, cramped bathroom I felt the power of her name and the flimsiness of the veil that separated her from our night of Disney channel movies and popcorn bracelets. Though I emerged from the bathroom to the disappointed faces of my friends, I felt I had saved our evening from something we didn’t want to face.

When I began searching for a diagnosis for the kaleidoscope of symptoms my body had presented me, I still held the same belief in the power of a name. I imagined the loops of identical waiting rooms finally unraveling with a name I could call out into the darkness. I didn’t know if the name would expel or reveal, I only knew that once named it would no longer be a figment of an imagination left to its own devices. It wasn’t that I was unafraid of what could come crawling out of the black, summoned by a white doctor’s coat, just that whatever materialized would finally have defined edges. Whatever shape took form in front of me, however large and gnashing the teeth, I would be ready to stare into its red eyes and open mouth.

What I didn’t realize, heaving myself off of the crinkly paper-covered chair in the doctor’s office, was that the name of my chronic illness was not a crucifix I could wield against it. Instead, the strange combination of letters formed a Pandora’s box I could never close again. The initial relief of hearing it spoken quickly dissipated when a landscape of medical jargon and Google searches unfolded in front of me. I said the name as many times as my breath would allow, yet the only image staring back at me from the mirror was my own body. As the days went on, I tried to picture myself as the heroine of her own odyssey, but the days before me weren’t able to be vanquished or conquered. Each sunrise opened like the shaking of a magic eight ball, asking will you behave today? and my body responding not likely.

When the dust of new tests and old cures finally settled, I tried to use the language that had been given to me and move forward. Even if I didn’t believe in the power of a name anymore, I had hoped it would hold sway with others. If speaking the name of my chronic illness into the mirror did nothing but fog up the glass, maybe speaking the name to someone else would allow me to see the reflection in their eyes. Unfortunately, the more I employed the language given, the more I could see the word chronic rattling around in other’s mouths like a tongue twister. It’s hard to conceive of a story that has no ending. It’s even harder to tell it. The majority of us would prefer our narratives presented as neatly tied bows instead of a box of tangled ribbons we have to attempt to make sense of. In the failings of this language, those around me attempted to invent their own. They employed new words like resilient, brave, and sensitive and pinned them to their portraits of me. For a while, I tried to own these words too. I tried to plant them like flags into the soft soil of my body, but they were never able to lay claim. Nothing captured the truth. Nothing captured the way I was able to recognize the texture of my own skin and yet my body still felt unfamiliar to me. Nothing captured the way the light played tricks on my own reflection, sometimes showing a young woman and sometimes a caged animal.

After years of being given words that did nothing to describe something I’ve grown to know intimately, I learned my own. I began to accept the ways in which every light comes in slant and every shadow can be a trick. I began to accept the way chronic illness shapeshifts as soon as it’s pinned beneath the glass. I began to accept that to explain my chronic illness is to embrace the illusions of contradictions. My body is all at once a fortress and a prison. My days are all a balance of thriving and rotting. All wins, big and small, are slightly burned around the edges. These metaphors may not capture what a chronic illness is to a doctor or to a friend, but these metaphors speak the language of my body in a way it’s never heard before.