Beauty Is a Verb

by Jennifer Bartlett

  to adapt

  to be crippled means to have

  access to people’s fear

  of their own eroding

  main part

  primary figure

  the opposite of the soul

  opening

  mere container

  the thing that transitions

  shelter me

  flawed shelter

  unwieldly

  spastic soldier

  invalid of no legal force

  composed primarily

  of water and light

  this is my body

  I am its light

  a mere shadow remains

  so that, the body is erased

  excepting movement

  I am all motion and

  this motion is neither weak nor hideous

  this motion is simply my own

  Cynthia Hogue

  THE CREATURE WITHIN: ON POETRY AND DIS/ABILITY

  Well, nothing is predictable with pain

  Did the old poets write of this?

  —ADRIENNE RICH

  I’m writing about poetry and what I have come to think of as the dis/abling illness I have, and suddenly feel as blank as the blank page of the unwritten volume of the new. I can’t write myself except through reading others’ words. Will try again later.

  Later, I take up the delicate Paris Press edition (2002) of Virginia Woolf’s essay, On Being Ill. It’s too beautiful to read more than a sentence or two. “Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed...what ancient and obdurate oaks are uprooted in us by the act of sickness,” Woolf wonders why illness is not, like “love and battle and jealousy,” among the great literary themes. In this description, Woolf captures the sense of how it feels to get a serious and debilitating and finally disabling illness, that it’s like arriving in a country one never thought to visit. When I landed there, I wanted to book a flight right back out. All planes grounded for life.

  As for why few write about illness, I reason that everyone falls in and out of love, is jealous and gets over it (or doesn’t), fights or is fought for, but not everyone gets a disabling illness. And there’s the rub. Why would anyone write about illness except the ill? And at first, too, the experience is too close for the ill person to be a reliable witness. The mind doesn’t want to write about the body’s condition but to change it, for in dreams the body can still dance!

  Trying to dance around the question of my poetry’s relation to my illness, I read Woolf’s inimitable prose, which I register viscerally, because my nerves are on the outside of my skin now. I experience the words as excruciatingly truthful. They make me squirm, not dance: “The creature within” the ill body, Woolf writes, “can only gaze through the pane [or pain]—smudged or rosy; it cannot separate off from the body like the sheath of a knife or the pod of a pea for a single instance” (emphasis added). I think, “I” became that “creature within,” that “it” when I became ill. Why in the world would I want to write about that?

  Reading Woolf’s essay, like being ill, is an odd—and ethical—experience of having the self mirrored back as other, of being unsettled by the otherness of the ill body of which she writes so movingly and so coldly. When I got ill, I began to feel an empathy for this othered self with which I could not yet identify, which was suffering, and which I was being forced to suffer. I also felt empathy for others who, I began to notice, were imperiled by circumstances (in that way the unconscious ruptures language with truth, I first wrote imper-illed). Woolf writes that a statement like “I am in bed with influenza” cannot convey the depth or clamor or distortion of perception of this insistently embodied experience: “How the world has changed its shape,” she exclaims. What one learns about human nature! Friends change toward the ill person, some revealed in their strange and beautiful kindness and some exposed in their utter, ugly selfishness. A friend cannot perform “friendship” to an ill person, because she will see right through it. The ill have no time or energy for anything other than the raw and startled truth of another’s soul. To an ill person, subterfuge is transparent, and though she may not blurt out what she sees (to which, when healthy, she was blithely blind), she will eventually write about it. Both poetic and existential excess is scraped away. The decorative and the distractive are dropped like old habits one has outgrown.

  I have been moved by poetry that conveys the essential. I live with, contemplate Adrienne Rich’s poems and essays about having rheumatoid arthritis (as it happens, the very disease I have). I never took in the details until I was myself living them. Rich reported news I had no way to understand, because it was about a body’s experience I did not share, and described the indescribable (pain). Then, her words became my guides to an expanded, although unasked-for, awareness.

  Sometimes, I try to write about the phenomenology of ill health by describing it tangentially. The alienation I have felt from my old life and from the world of the healthy resembles culture shock, another phenomenon I have experienced, because I have lived and traveled abroad a good deal. What interests me about both these conditions is the sensation of the self’s erasure: the disappearance of the signs by which one knows one’s self. In the poetic series I worked on during the first decade of my illness, I collaged in medical descriptions, quoted specialists, discovered a visual and symbolic text within a poem, words within words leaping out at me as I struggled to find poetic language in the face of cognitive impairment. I found myself using the second person pronoun, on occasion, the “I” becoming an addressee, a “you,” and the poem an apostrophe designed to conjure “me” back to the world. “The whole landscape of life lies remote and fair,” Woolf writes. I watched myself turn into a stranger who lived inside a bell glass, far away from all I’d known. All of it was gone—poof!—as if “it” or “I” had never been.

  Writing connects what had been to what is. I write from inside a slowly disabling illness to avert extinction, not to understand the mystery. I don’t want to translate this experience into something that is neat or simply meaningful. I want to open the mind to the majesty of perspective—all that dis/ability proffers—which sounds a dissonant but resilient note. I want the poems to resonate with this tone. Call it an aspiration. On the blank page, I see the poems hover in the air like charms, potent and poisonous, magical and medicinal, instructive of a spiritual journey no one chooses, and onto which one stumbles clumsily, trying to catch one’s balance, looking at times wistfully back at the road one missed before looking ahead again, carrying on.

  Green surrounds the mind of summer

  Taking time, patience

  This new body a new land

  The doctor said, “Let’s say

  that people with green haIr

  are more likely to cOntract

  this disease, so for our purposes

  it’s as if you have green haIr.”

  He wOn’t kill

  but he cannot

  cure you

  There is nO cure

  Now there’s nO there

  your mind left

  without your body

  Where did “you”

  gO?

  The study of individual illness, with the notion of social illness, is a window for us to look at the characteristics of social experience in our society, as well as the development, maintenance and treatment of disease.

  This happens dAILy

  This unspecified this, a waking

  and thinking This Is It this!

  Take it, beLIEve this is

  not in your control

  You do not read about this

  “isn’t news”

  If nothing means anything

  the medical report

  a construction of meaning

  to mean something

  The paradigm of the healthy social world of normal people sees social support therapy as a rite o
f passage. The person with chronic illness is cast into a permanent liminal state.

  then disease-free

  is a state of being

  you can claim

  to emBODY, saying if

  you do, you do, and you dO

  (it’s a lie)

  In a Mute Season

  Questions rail along the field

  where winter wheat lies hidden

  in snow. (We lie to justify

  indefensible behavior, to protect

  unprotectable innocence, inhaling

  and exhaling with an evenness

  of spirit to which we aspire.)

  Who calls the sky gray?

  or the seasons from hell?

  I visit doctors because

  my body drives me to them,

  beyond my dictates. Ailing,

  I am healing before

  my mind understands

  that the phenomenology of pain

  harbors words which refuse

  syntax and order, predictable,

  eventual inevitability,

  until I grasp that order

  eludes us, dispersing,

  a wall of fog we drive through,

  so frugal of speed, spendthrifts

  of time. To feel alone is merely

  the mind’s last defense—

  a physiological white-out—

  from the spirit’s largesse.

  Radical Optimism

  I held the cup, which emptied.

  Possibly I watched. I balanced

  on a bench. The room chattered,

  a party. I dashed notes:

  Can you be with not knowing,

  living the separation, cult.

  of grief (culture or cultivation)?

  A broken heart is a whole (I’d torn

  it away). Grasped a filled cup.

  Around me swirled laughter

  as if the glimmering sprawl

  of the Milky Way emerged

  when wisps of clouds scuttled past

  in the night’s wind. I couldn’t look

  up. If outside, I’d not have

  noticed. This lasted hours,

  then morning came. The words

  were clouds swept away

  by laughter. I scribbled,

  trying to preserve the invisible

  ink of memory, and that breaking.

  Danielle Pafunda

  MEAT LIFE

  In 1980, I was hospitalized with a plummeting white cell count. Blood samples, marrow samples, gothic looking x-ray machines. Beyond naked, I was split, spread, flayed, spun, separated. I shrieked and kicked and bartered. Bolt upright on the surgical table, I hissed, “Doctor, what did I ever do to you?” But I soon learned that there is no stick sharp enough to make that eye blink.

  Like the male gaze, the medical gaze doesn’t exist discreetly in the human eye, but as a sort of collective eye. A cultural peeper. The medical gaze, leering ever pointedly since the end of the nineteenth century (see Foucault), works two ways: 1.) it reveals things about you that you yourself did not know, and 2.) if it cannot see your illness, your symptoms don’t exist.

  Frustrated with recalcitrant doctors, my father brought the results of my blood tests to our veterinarian (true story), who diagnosed me with chronic severe neutropenia. Neutrophils normally make up 50-70 percent of the white blood cells. In my case, zero. In my case, an idiopathic neutropenia, out of the idiot blue. With hindsight, we can wager environmental toxins, overuse of antibiotics, wrong time, wrong place, bad karma, coal mine canary. My very kind hematologist never discovered its source, couldn’t predict its future. He kept me alive, and helped return me to more or less normal—I got out of isolation, could be touched by human hands and attend school with other children. How could I ask for more?

  Today, my autoimmune disorder manifests most notably as fibromyalgia. While its symptoms have been observed for centuries, we didn’t define it as such until the late twentieth century. Between the early 1980s and late 1990s, there was no medical reason for my pain. Now MRIs prove its neurological components! Medications abound! Television commercials for medications abound! Serotonin! Substance P!

  I have fibromyalgia, I say, and now the look I receive is sympathetic.

  We know that pain is inarticulable (Elaine Scarry is particularly articulate on that point).

  We know that we must speak in metaphor about what we are feeling.

  In medicine, the body is an object with mechanical properties, and under the medical gaze, its feelings must always be secondary, may not be valid. The (female) body is an object, and under the male gaze its feelings may not exist.

  As a woman, I’m subject to the male gaze, but I was sick before I was a woman, and so am profoundly, perhaps equally, subject to the medical gaze. They often work in collusion. They constitute me. And yet the male gaze also reminds me that my illness is largely invisible.

  I know there is an immense difference between my largely private experience of illness and limitation and the very public ways in which people with visible disabilities must confront the gaze. Baroque staring (see Rosemarie Garland-Thomson), public insult, desexualization, forced sterilizations and other socio-physical nightmares—our culture has been, and remains, intensely invested in the able body.

  My body can pass for able. The question: should I allow it to do so? Am I a dilettante in the realm of disability, dabbling in limitations? Or, if I allow the male gaze to categorize me as normal, am I in league with the ableist agenda? I don’t know. I do know I have always had to, and will always have to, live consciously within the meat of the body, and this meat life influences every fiber of my politics/poetics.

  In poetry, I try to do at least this one thing consistently: to attract the gaze, to pin it or fix it in place, and then show it those sights which will brutalize, horrify, repulse or shame it. It’s the legacy of Plath, whose speakers find strength, dignity and satisfaction in their own debasement. It’s a perversion of Kristeva, wherein the speaker experiences abjection, but instead of sacrificing a portion of the self to rid herself of the abject material, the speaker uses the abject material as a gateway out of the normative structure in which she has been imprisoned, broken or otherwise subjugated.

  In this Plate My Illness is Visible

  I wear a bag of hammers. I alter

  my gait through the knife house.

  My face pigs and expels symmetry.

  What will you ask me to do,

  my tunica intima thick with teeth

  and my neck herky-jerky

  with an ethanol samba?

  My illness is visible. For the first time

  in centuries. A technician

  can wheel me into the sick meat tube

  and my meat will register.

  In this Plate My Illness is a Wire

  that Can Easily Cut Meat and Bone

  Lately, my illness agitates

  just beneath the skin layer.

  In the dark, it will dumb you. It will twitch

  over the border and take your hand.

  My muscles flare, bullish. Contracted,

  I accompany them above the bed. I lapse

  just a ml. of fluid, I lap you.

  I did not want a bridle infection,

  but now I am mad with injustice.

  I string you, a fucked instrument,

  a wire riddled perma-slaughter.

  I shard and glisten. What sludge

  for a bridegroom.

  In this Plate I Receive My First Diagnosis

  Because the veterinarian solved me,

  I am now his dog.

  And a girl, and I go to school

  where everyone

  jumps my dog bones.

  I dress for everything that might kill me.

  In kitty ears

  and a pair of my brother’s plaid boxer shorts.

  I drink Windex.

  My mother serves it to me.

  I eat apocalypse steak.

  I have
a bitch seizure.

  Of course my rhinestone collar

  keeps me from swallowing my tongue.

  I swallow my boyfriend’s tongue.

  He’s not my boyfriend. He’s a dog.

  He’s a man and he hates me.

  He’s molding his loose ham into my friends in front of me.

  Or he’s calling me long distance

  because it’s years ago and he’s plagiarizing

  someone he just met, and he wants

  to describe her kustom built pelvis.

  He’s a girl, actually. I put my hand

  in her pants and grab something.

  For all these years, no one says anything

  about the long trail of worms

  weeping out of my britches.

  In this Plate My Traumadome

  Has Come Unzippered

  I had a special linen woven out of my

  voluntary tissue. I had it wrapped tightly

  to a depth of twenty layers.

  It was a traumadome and also a mummy cage.

  I hooked electrodes to the linen, and these,

  they frothed and burned me.