WHEN A WHEELCHAIR MEANS
FREEDOM

by JOHN R. KILLACKY

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Seven years ago I left the world of the temporarily abled. Complications from surgery to remove a tumor from inside my spinal cord left me with Brown-Séquard syndrome and paraplegic. On my right side, extreme neuropathy persists, with no ability to perceive sensation or temperature; on my left side there is spasticity, and an inability to sense location and touch.

Years of physical therapy, stretching, swimming, light weights, water running, Feldenkrais classes, chiropractic, mud and enzyme baths, and massage have given me some strength and range of motion, but not a balanced gait. Consequently, my bifurcated body is not aligned, torqueing with every step. Navigating my deadened limbs and twisted trunk, pain and fatigue are constant. Seven years and counting, of tilting toward the ground.

Last year, when I asked my husband what he wanted for Christmas, he said, "A wheelchair, so we can do more things together." I worked so hard learning to walk in the hospital, I was adamant not to sit down again. The ex-dancer in me learned to stand up visually, and the ex-marathoner knew how to take the second step. I even left the AFO ankle brace behind, afraid that my withered left leg would never return with it on. I still dream fully abled and even want my cane to be temporary. I viewed using a wheelchair as defeat.

He explained that with a chair we could go shopping together, browse bookstores, and take the dog on extended walks as a family, thereby improving our quality of life. He wanted me to do it for him as much as for myself. He argued that by not exerting myself so much, I might in fact extend my walking,since after a block or two, my increased neuropathy and weariness grow debilitating.

My doctors agreed, as did my physical therapy team. However, the insurance company did not. Since I was a "community ambulator," coverage was denied. I was told they only provide wheelchairs for patients who are completely bedridden and cannot walk. It seemed oxymoronic to me. Luckily we were able to manage the finances and a few weeks later a sleek black Quickie Rigid came home with its wheels cambered to make it look (and function) like a racing chair.

Propelling the chair proved harder than I imagined; my fifty one-year-old body had never engaged those particular muscles before and my condition made for an interesting challenge to exert equal force with both arms. However, within months my dormant marathoning self was reengaged: building up endurance, time, and mileage, complete with racing outfits; husband, dog, and I would go out together.

At first, I was embarrassed to be seen in the wheelchair. My fun was spoiled whenever we ran into someone we know. People invariably asked if my health was worse. I found it impossible to tell them the chair actually improved my strength and vitality. Eventually I asked friends to join me for my workout, rolling along Crissy Field framed by the Golden Gate Bridge.

Thus far, I only accept the chair as a recreational vehicle, never bringing it to work. Ego is a fragile and curious thing. I feel that my shuffle and cane are somehow more imposing to my professional colleagues at The San Francisco Foundation. However, I have started using the chair at dinner parties at home. I find it more comfortable and my energy lasts longer when I am in it.

People get confused when they see me move in and out of my chariot. At the State Fair, I rolled up to the Tilt-A-Whirl and stood up to join the line. The ticket taker asked my partner, "Can he get on this ride?" "You better ask him" was the now standard reply. Ignoring those of us in chairs used to infuriate me, it is too common an occurrence. That day I just tossed it off and climbed on the ride, screaming and laughing as we zoomed around in circles.

I did hit a bump in my recovery road; I blew out my shoulder. Pain there and in my legs was so severe that I did not sleep and had a hard time focusing. As anyone experiencing chronic pain can attest, exhaustion can be a physical and emotional state.

After consultation, I added another drug to my pharmaceutical maintenance plan and layered in new therapies that include biofeedback, self-hypnosis, acupressure, and acupuncture. With each new modality of treatment, I must interrupt my expectations. Rehab is continual and recovery will be gradual; improvements are not cures.

My chair mileage is scaled back for now as I focus on micro calibrating muscle groups with more modest specificity. I do not know if I will work my mileage back up. I might miss an upcoming race for the cure, but this morning I went to the ocean with my family and rolled along slowly and happily.

© 2004 John R. Killacky

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John R. Killacky co-edited, with BENT editor Bob Guter the anthology "Queer Crips: Disabled Gay Men and Their Stories," published in 2003 by Haworth Press. Killacky recently moderated an on-line discussion with The Non-Traditional Casting Project entitled "Queering the Crip" with Terry Galloway, Raymond Luczak, Judy Smith, and Greg Walloch.

 

 

BENT: A Journal of CripGay Voices/January 2004