ARTSblog

John R. Killacky in “Dreaming Awake” (Photo by Laurie Toby Edison)

Sixteen years ago, I had surgery to remove a tumor from inside my spinal cord. Although the tumor was benign, the surgery paralyzed me from the neck down. I spent six weeks in a hospital and months learning to walk again.

I called upon my artist-self during those darkest hours. My fingers were the first part of my body to experience any functional return. While others at the rehab hospital were wheeled off to occupational therapy, I asked to go to the computer lab to tap out sentences with the one finger up to the task.

I felt an overwhelming urge to put on paper the thoughts crowding my brain, make some sense of the experience, and reassert authority over my body. Some of this writing was later featured in the Lambda Award-winning anthology I co-edited entitled “Queer Crips: Disabled Gay Men and Their Stories.”

As the weeks progressed, standard physical rehab provided little success. I realized when being transferred from bed to wheelchair my body could hold itself up (although briefly and with assistance). While the kinesthetic connections were lost, I thought I might be able to learn to stand up visually. So I asked to work in front of the mirrors. Therapists were skeptical and reminded me everything is backward in a mirror. “Yes,” I countered, “but as a young man I was a dancer and learned to dance with mirrors”

It took some days with leg braces and a walker, but eventually I stood in front of that mirror. What I could not do kinesthetically, I accomplished visually. Over the next weeks, I began to walk between two parallel bars in front of the mirror. Tentative steps grew ever more confident. The dancer in me taught my mis-circuited body to walk again. Sixteen years later, I continue dancing through life, albeit slowly and with the assistance of a cane.

I also made several short films about my spinal journey. “Dreaming Awake” made in 2003 is a prayer of reconciliation for my discombobulated body featuring music performed by Joan Jenrenaud and the Kronos Quartet. Here is my voice-over narrative for the video:

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.

The complexity of coping with the resultant physiological, emotional, and social issues of disability is as potent now as when I wrote this poem in 2003.

Sixteen years post surgery; I am still circling the drain as I live within this body. However, I am extremely grateful that art provided me tools for healing, hope, and reconciliation.