How to Write in a Sick Person’s Body

Guest Post by Paige Eve Chant

Not too long ago, just as spring was turning over into summer, I awoke with a slight numbness in the fingers of my right hand. The morning was early yet, the sky outside still dark, and as I wrote, my fingers were a little slower than usual to find their keys. By the end of the day, I was fumbling in the most ordinary of tasks, like opening a jar of peanut butter or reaching for a doorknob.

The next morning, I dropped my toothbrush; days later, I could no longer sign my name, which struck me as somewhat scandalous. I could not brush my hair (a secret vanity of mine), or unbutton my husband’s shirt (a secret pleasure of an altogether different kind).

Before the end of the week, I found myself in the radiology unit of our local hospital. As the technician pushed me into the MRI machine, I thought of medieval monks with their halos of hair and the coffins they climbed into each night to sleep.

Time is an altogether other force in the tube—it operates by a different set of rules—but inside, holding myself stiller than still as each scan sounded its blaring alarm, I did not worry so much as wonder at this swift betrayal of my body. Even then, in those early days, my body did not seem unkind to me.

By the time the diagnosis was confirmed, nearly two weeks after the onset of my first symptoms, it seemed oddly anti-climactic, almost beside the point. Time passes and time does not pass. And so already, even then, when I heard the words multiple sclerosis, what interested me most was not the disease so much as the disability, because if my hand failed me once, falling away from me like so many strings of a marionette, it could fail me again, and how could I write if I could not feel the keys beneath my fingertips, hear the rhythm of my words as they made their first noisy appearance in my early-morning world?

At first, I thought I might keep it a secret, this new disease, because privacy is a long-lost treasure in this world. I was eager to set something apart, to call something mine and mine alone. It made me feel powerful, toting around this secret knowledge, harboring this (mostly) invisible disease in a body that is, if you are the kind to trust appearances, young and healthy and able.

So I made a private resolution to tell no one. But, of course, it did not last. It turned out to be a perverse and misguided effort, far too exhausting to maintain. Secret ills, after all, are quite different than secret pleasures.

So here I am, much to my own chagrin, writing about it, not because I want to (I do not, in fact), nor because I feel the need to “come out” with it or to “identify” with it or even to “process” it—no, nothing so noble as any of that. I am writing about it simply because it happens to be in my way, this disease.

Before my diagnosis, I woke up at five to write for two hours before heading to my day job. I sacrificed sleep, exercise, and, on more than one occasion, meals, so that I could tap out my fanciful stories on this ancient laptop of mine.

Sometimes, as the saying goes, there is no way out except to go through, so here I am, doing it the only way I know how to do anything, which is to write my way through it, trying to navigate the gnarled, foreign landscape that my body has become, with words as my unsteady compass.

There is a whole trove of literature about sickness, I know—a rich tradition of “illness memoirs”; by writers who are also doctors, scribbling story ideas on prescription pads in between appointments with patients who may also be writers themselves, like me.

But to be honest I am not all that interested in reading about the experience I now find myself to be living. I am too restless; I do not have the patience for it. Once is enough (and too much, at that).

What interests me, rather, is how to be in this new body of mine that seems to demand so much more time and attention and, yes, feeling, than ever before. When I most want to escape my body, with its sudden, myriad betrayals and petty idiosyncrasies, how might I manage to burrow still deeper into myself, to take up refuge in this body of mine that has disappointed me so, and therein find the monk’s cell where I can write?

After earning her Master of Fine Arts in Creative Writing at the University of Washington, Paige Eve Chant was awarded the 2010-2011 Milton Center Postgraduate Fellowship. She is currently at work on her first novel. Read more of her work online at www.paigeevechant.com.

Art Pictured: Laura Harris. Ashima-Endless, Limitless, without boundaries.

  • Chad Thomas Johnston

    Thanks for sharing this, Paige. You seem to have found that monk’s cell where you can write! I appreciate your candor.

    • Paige

      Some days, the monk’s cell is more elusive than other days, but I do believe it is always there. And it is always calling to me. Many thanks for reading, Chad. (Btw, so happy to have discovered your work!)

  • Jan Vallone

    Paige–This is an absolutely beautiful essay. I have no doubt that nothing will keep you from writing, and I look forward to your novel.

    • Paige

      Jan, thank you so much for the kind words. I think it was George Orwell who said that writing a book was like some bout with a long and painful disease… and now, as it turns out, I find myself in the middle of both!

  • Brad Winters

    There is great wisdom here in the clear delineation between body and spirit that the piece and its title denote; I love the third-person effect of the voice, how you render such an intimate distance from your own experience. Wishing you all health…

    • Paige

      Many thanks for reading, Brad. “Wisdom” is something I’m always scrambling after, though I imagine that the scramble itself is not always the wisest of ways. Wishing you all good things.

  • Hannah_FN

    Beautiful work, Paige. One of my favorite poets, Lucia Perillo, also has MS. She has an incredible way of writing about the body that is funny, unsentimental, and twists your gut.

    • Paige

      Hannah, thank you so much for reading. And thank you, too, for re-introducing me to Lucia Perillo. I had come across her work before, but I am just now returning to it again, and I am thankful. Funny, unsentimental, twist-your-gut writing is the best kind of writing there is.

  • Lauren Davis

    Thank you, Paige! I have MS, too. And I’d rather read your writing about it than anything in the MS magazine–yours is beautiful–so refreshing after the grim, clinical stuff!

    • Paige

      Many thanks for reading, Lauren. Yes, it’s true that the grim, clinical stuff of MS can be a bit.. well, grim and clinical. But there is beauty everywhere, I am convinced of it–even in these imperfect and disappointing bodies of ours. Here’s to good health and, when that should fail us (as it fails us all at one time or another), beautiful, life-giving moments.

  • Jamie Hughes

    Paige, I have been an MS patient for ten years now, and I can tell you that it might not end, but it does get better. Many of your words were mine in those first years: betrayal, escape, disappointed, identity. It is a disease that is hard to explain but so easy to hate. However, you can keep living and keep writing through it. Don’t be discouraged, and keep doing both. Blessings to you.

    • Paige

      Thank you for the fellowship, Jamie. And thank you for reading. Onward we go, words and health in hand!

  • joe_zito

    you hear in 360 degree, but see only what’s in front of you; can you
    find the limit at which your perepheral vision slops off into blankness?
    i wouldn’t bother, but to think about a time your vision was important
    for survival, in battle you could imagine the field of severed limbs and
    the effects of agression all around as stains of blood, either the
    dying in combat or massacres of combat, how special your pereferal
    vision was in the grand scheme of political history; sloping off to the
    glarring you wage a new and all too corageous battle whose twilight is
    irrelevant toward this duty we impose?

    so first the engine roar of that station wagon which held us saftley,
    warmly in our winter knitted scarves and heat channeling from the
    engine; just air that’s passed over the engine, which is hot enough to
    make it waves, bringing our transport to a zone of distinction in
    january of the coldest season; our little souls knew cold was death
    while summer we slept under the stars without sweating; through the
    hostility of a winter you thought about respect, caution, about
    discipline to ration our resources and to control our behavior in awe of
    the season who would devour us without sympathy, only we imagined the
    final thoughts in freezing outside this hub of protection, would be the
    omnipresent ambivalence of nature, so we cherished our every vision of
    charity; it was a warmth to exceed kindness in every dimension, it was
    the very energy of ourselves;

    we were children then, not ready to administer the source of our
    survivals; but our first feelings were sympathy to consume the nurturing
    which would remain our world, only to consume and how long did it take
    to feel pathetic? only to consume and never to provide this source of
    sweet precious life? how long until you are locked out in the cold,
    skinned your knee far from home to discover the neighborhood gangs less
    sympathetic than your mother about stains of blood? sympathy for the
    unloved? hardly; that sweet naivity’s poetic justice was flickering
    inside your tummy at 8 years old when you moved your eyes back and forth
    frantically like some categorical impression an insect leaves, watching
    the shapes and colors of this world pass by the window of a moving car
    too quickly for significance; they were broken down, brused and ugly
    streets you could never avoid, and they were sad places that needed your
    childish sympathy because they never felt the nurturing you felt; and
    at that moment in time, if you remember, you were sympathetic to
    everything that wasn’t you; how long did it take to realize you were
    alone in your feelings?

  • joe_zito

    this isnt heaven or iowa

  • joe_zito

    my current poetry project, coming along rather slowly: http://dogfucker4.blogspot.com/


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