A print of mine, Necessary Action, created from a word cloud of voice-overs from three of my disability-related videos is included in The S.P.A.C.E. Gallery’s “All that Feels” exhibition, February 2-24.
NECESSARY ACTION (2000)
Seizures at bedtime. MRIs locate a tumor inside the spinal cord. A hospital gurney takes me into overhead white light. I wake up screaming, covered in blood and iodine, paralyzed from the neck down. Body and mind are ripped apart. I cannot stop the jerking of my limbs, unclench my hand, or move my toes. There is no location on my left side and no sensation on my right.
All I have is Larry. His eyes say “Don’t Die.” Dawn is the worst -- with him asleep and the medical shifts changing, I stare back at the world, whimper, and cry. What’s the movie today? I fantasize getting to the window, breaking the glass, slitting my throat.
Two boys down the hall -- motorcycle crashes screwed cages into their skulls. No one’s told them they’ll never leave. The elegant woman across the way -- flawless on top, but her legs are dead. Another surgery gone wrong. My roommate lost toes to diabetes and had another stroke. His wife screams on the phone to come home.
People worse off make me feel less sorry for myself, until someone more mobile shows up. I’d rather be alone glaring at my swollen and skewed left side that is flaccid, sagging and lifeless. My movie in this room has the helmet kids not shrieking, the young men walking upright, the old ones not drooling, and me tapping my fingers.
Six weeks in the hospital and two months in a wheelchair at home, then I navigate life on the outside. Alarmed expressions, sympathetic smiles, and open-mouthed pity: the more generous people are to me, the more I resent them. Few really care to know, most want only to be reassured. Each encounter makes me smaller.
Meeting other crips, I never ask my real questions. I’m frightened when Jack regresses, Stephanie gets depressed, Judy breaks her hand, or Mark dies. The movie here? Stephanie’s legs untangle, Jack walks unassisted, Mark gets published, and Judy rides her horse with me running free. I still dream fully able, they all do too.
Life at home revolves around getting to work and fitting in rehab with Larry as my soccer mom. Cooking and cleaning, the dog and me; I’m a burden to him. While my relation to living remains elusive, I don’t know how to ask his forgiveness to go first. As we drive across the Golden Gate Bridge, I imagine us as Thelma and Louise, blissfully accelerating into oblivion.
With no sensation, sex is purely visual. Reciprocating with my enfeebled fingers and locked-in neck is short lived. Often, I disassociate to retrieve stored memories of thrusting, receiving, grasping, hardness, wetness, stickiness, and release. It’s not enough. The movie should have us rolling around wrestling and jousting, fucking and sucking with gleeful abandon.
I’m despondent whenever my body fails and it always fails me. Sadness and anger, frustration and tears are constant -- but private. As the neuropathy increases in my legs, I obsess on long-term survivors whose over compensating bent frames refuse to give in. My debilitation fuels self-loathing. I embarrass myself with fear and shame.
What I wanted to be temporary is permanent. There are no happy endings for the movie today: no transformations, no miracles to celebrate, and no heroic deeds. There’s just Larry and me, holding on to one another, slowly making our way in the world, careening side by side.
DREAMING AWAKE (2003)
I dissociate from the burning in my legs,
silently crying between sleep and the morning.
Hopes and dreams keep me safe through the night.
After surgery, I died then,
but you refused and brought me back.
Seven years and counting, of tilting toward the ground.
I am afraid if I sit down, I will never get up again.
The dancer in me learned to stand visually,
the marathoner took the second step.
Rehab gave me strength and range of motion.
But with each new modality,
I interrupt expectations:
improvements are not cures.
If I sit down, I will never get up again.
Still imagining a body I cannot have,
I startle myself, glimpsing fatigue in passing windows.
My bifurcated body torques with every stride,
neuropathy and weariness debilitates.
Therapists caution about wear and tear,
while friends cheer, “You’re getting better!”
If I sit down, I will never get up again.
Navigating deadened limbs and twisted trunk,
pain remains constant, dulling our life together.
After a day’s activities, I have no comfort left to give you.
Living through chemistry, libido is gone.
Holding and touching you,
I long for remembered sensations.
I’m afraid if I sit down, I’ll never get up again.
If I sit down, I’ll never get up again.
* * *
In this metaphorical body,
I try to intercept suffering,
abide in discomfort,
forgive the trauma.
Bearing witness,
I sit with loss,
move toward unobstructed feeling,
and bring you along into my dreaming awake.
NIGHT SWIMMING (2004)
By day, I am an arts warrior, public servant, heroic crip. Open, responsive, cocksure, ambitious – I seize the public gaze as a bully pulpit. Offstage finds me enslaved by quivering muscles contorting my stride.
After surgery, my swollen spine shut down. Gurus and saints abounded, but no roses from above. Paralyzed weeks turned into months – a flicker, a twitch, a wave; sitting to standing, six steps to go home, with wheelchair, ankle brace, and cane.
Gestures repeat to imprint; but gravity intervenes. Syncopated embellishments focus spatial awareness, though alignment remains akimbo. With little sensation, each footstep is defiant. Only in the pool can I run with the ponies again.
Eight years now – I still fixate on atrophy, ignoring progress. Balancing rehab and recovery, clinging to a reconnecting, physical therapy and pharmaceuticals combat lost kinesis, encouraging hope.
Night murmurs locate points of pleasure: behind the left knee, above the nipple. I crawl inside the softness, relishing the incandescent kundalini rush absent pain. Legs lie quiet, the burning subsides. Stillness embraces me.
In the extra room (that we do not have), I plié and pirouette with dramatic abandon, leaving behind my imploded, twisted carcass. The tumor does not return. My pelvis aligns. Depression dissipates. Then I awake.
Violent spasms hurl me out of body. Heart and breath stop. I stare down at my contorted gaping hole of a mouth and rehearse death, porous and seductive. Floating in this space between, I no longer fear dying, only waiting.
Stolen shadows hover. It seems easy (one breath away), but is so hard to surrender into the void, although I am well practiced, writing libretti for lost lives in vigils through the night and surviving my own demise, time and again.
Larry carries me back once more through his weight, touch, and voice. Unfettered love makes the journey familiar and secure. No past, no future, just present. Grasping for now, I pray for clear seeing, acceptance without judgment.
Morning comes. I amble toward the light.