ALTEREDSTATES

by JOHN R. KILLACKY

Photo ©2004 Mark McBeth
IDEA | MONGER

 

Video artist and arts administrator John R. Killacky's writing for BENT includes explorations of disability from various perspectives. Some accounts are straightforward narrative, others are examples of life translated into art. "Altered States," the fullest account of his experience, was written while the author was curator of performing arts for the Walker Art Center in Minneapolis. He subsequently became executive director of Yerba Buena Center for the Arts in San Francisco. He is now program officer for arts and culture at the San Francisco Foundation.

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April 22, 1996. I had just dozed off. Larry was reading beside me in bed. Something like an electrical current entered my feet and pulsed up through my body. The convulsions lasted about fifteen seconds. I regained consciousness to find Larry pummeling my chest with his fists, calling, "John, come back, come back!" After it was over, we both knew something extraordinary had just taken place. I agreed to call the doctor the next day, and we both fell into fitful sleep. Larry had a vivid dream whose message, he later told me, was unmistakable: Pay attention to the details in life.

A visit to the doctor was followed by tests. After two MRI scans of the brain, the radiologist wanted to hone in on the upper spine. I nervously asked if they had found something or if the other scans were inconclusive. The technician answered, "Yes." Larry, who had come with me, asked her, "Yes, you found something—or yes, the films were inconclusive?"

She replied, "I really can't say."

We learned that an ependymonaa tumorwas growing inside my spinal cord. It was located in the left side of the second cervical vertebrain lay terms, the neck area. Surgery was set for May 16. The neurosurgeon said he expected that I'd spend three to five days in the hospital and be fully recovered in about a month. Knowing that any procedure involving the spinal cord came with some risk, Larry asked the doctor to describe the worst-case scenarioshould the tumor be unexpectedly difficult to remove. "In the case of catastrophe," the doctor said, "breathing, motor strength, and sensation, as well as bowel, bladder, and sexual function, could be paralyzed."

Larry wanted to know everything about the surgery and its ramifications. I, on the other hand, chose to remain innocent of the details. The doctors said while the tumor was probably benign, it was big enough to have swollen and bent my spinal cordyet I felt fine. There were no subsequent episodes of convulsions. I was still jogging for thirty minutes a couple of times each week. I wanted only to think about the best-case scenario.

Nevertheless, I hired a lawyer and wrote a will, naming Larry as sole beneficiary. He was also given power of attorney and guardianship, and I signed a living will stating my wishes should the surgery be mentally incapacitating. When our two closest friends, Jeri and Kim, arrived to sign the documents as witnesses, I realized that this might be as close as Larry and I would ever come to a commitment ceremony. Certainly it was as close as we could get to legally protecting each other, our relationship, and our meager assets. Jeri must have been thinking the same way. She brought along a cake. On it was written" "When there's a will, there's a way."

It was still dark out when Larry and I checked me into Abbott Northwestern Hospital on May 16. I was put under anesthesia at 7:30 a.m. Eight hours later Larry was finally allowed into the recovery room. No one had prepared him for what he saw. I was a mess, as he later told me, still covered in blood and iodine and screaming that I was paralyzed. If this wasn't the worst-case scenario, it was close. For the next few days, Larry and I both groped toward an understanding of the dimensions of this calamityhe in a frenzy of shock and disbelief and I through a psychedelic blur of drugs (some of which were hallucinogenic). I remember little of that first week except the silhouette of Larry sitting by my bed, my only connection to reality. I could not move my left side, not even a toe or finger, and couldn't seem to place the origin of the blinding pain.

Transferred to the Sister Kenny Rehabilitation Institute, I stopped receiving massive doses of Demerol. Pain was now a primary indicator of the extent of the damage, not something to be distorted or blotted out with drugs. My mind and body seemed totally separate. No thought could will back movement, stop the spastic jerking of my limbs, or unclench my clawlike left hand. The loss of a sense of where my left leg, arm, and hips were, I was told, is a condition called proprioception. Though I had muscular control in the right arm and leg, I could not feel pain or register temperature there. Bladder and bowel control had ceased. I couldn't even sit up by myself. Even so, I fantasized about somehow getting to the window, breaking the glass with my head, and slitting my throat. It seemed inconceivable that I could inhabit this body.

My surgeon stopped by almost daily; he was dismayed at my condition and kept repeating, "I'm so sorry this has happened." Occupational and physical therapists became my sole focus as they cajoled the misfiring circuitry of my nervous system to release its stranglehold on my body. Improvement was agonizingly slow. I was asked to set short-term goals, I had only one: "To walk again," I replied without hesitation. "Start with things that are achievable," the therapist gently corrected me. "Toes and fingers. The rest will follow."

One day a nurse wheeled me to the sink in a corner of my room so that I could wash my face and brush my teeth. She was apparently unaware that I had not looked into a mirror since the surgery. The left side of my face and shoulders was flaccidsagging and lifeless; my head and neck were swollen, and the right side of my face was grotesquely skewed. I recoiled in disgust, as if I'd been confronted by a ghastly mask. This was not my face.

Denial became quite an issue for me. When Christopher Reeve, paralyzed from the neck down, was interviewed on television, I remarked to my doctors that I felt sorry for the actor. One of them looked surprised and asked, "What do you think your condition is?"

I was suffering from Brown-Séquard's syndrome. This, the doctors explained, was an improvement from the quadriplegia (total paralysis) that briefly afflicted me immediately following surgery. I had now progressed to a condition termed "paretic" (weakness or partial paralysis in all limbs), and was expected to be eventually hemiparesic (weak on one half of the body), with the numbness of my right side lingering indefinitely.

Indefinitely. Cruel word. I craved a precise timetable for recovery and peppered my medical team with questions. Every time I heard the phrase "anywhere from six months to a year," I wanted to scream. I demanded to know when I could return to work. When no projections were forthcoming, I became seized with panic. It occurred to me for the first time how thoroughly my identity, my sense of self, my very soul, depended on my professional persona. Now my whole life was suspended, on hold, and there was nothing I could do.

My days became structured around medications and bodily functions. I took drugs for spasticity, inflammation, blood thinning, nausea, bowel regulation, sleeping, mood swings, urinary infections, migraines, nutritional deficiencies, and pain relief. Often, when a new medicine was introduced, side effects kicked in, sometimes multiplying in combination with others. Emotionally and physically I would ricochet from one extreme to another until I became pharmaceutically stabilized again. I was traumatized whenever a nurse had to catheterize me to fully empty my bladder. Return of normal bowel function was months away.

In therapy I worked alongside other patients dealing with strokes or brain and spinal injuries. At first I resisted being in a group situationnot wanting to identify with the others, feeling safer in my own isolation. But seeing people worse off than I was made me feel less sorry for myselfthat is, until someone more flexible and mobile showed up. Larry and I began to notice how families, friends, and staff treated patients from different generations: Injuries to patients in their twenties were considered "tragic," while recovering patients in their forties were referred to as "heroic," and those in their sixties and seventies were quietly dismissed as "unfortunate."

Larry began bringing games into the hospital to pass the time and to help me build coordination and strength. I remember him dealing out seven cards and putting them in a neat pile for me. When we both realized that I couldn't bend my neck enough to see the cards and that I couldn't pick them up, much less hold them, we howled with laughter.

I began to claim victories. Washing and dressing. Sitting upright in a wheelchair and moving myself in and out of it without help. My thumb and fingers began to unravel, my toes began to wiggle, and ever so slowly my body seemed to respond to the prodding of therapists and loved ones. I couldn't wait to show off my latest emerging motor skills when people came to visit, and I would conserve my energy in anticipation of the proud moment. One night friends brought a picnic dinner. As they were leaving I surprised them all by painstakingly raising my hand up and waving good-bye. The first time I stood upright and took steps assisted with a walker and a leg brace, Larry and I both wept.

I felt an overwhelming urge to put on paper the thoughts crowding my brain, to make some sense of this experience, to try to reassert my authority over the mind that had inexplicably surrendered its own authority over my body. Once a day I would wheel myself into the hospital's computer room and tap out sentences with the one finger that was up to the task.

Two weeks into rehab Larry and I were supposed to take our first day trip outside the hospital. Instead, I spent the weekend in intensive care. The steroids and anti-inflammatory drugs had aggravated bleeding intestinal ulcers. I was given three blood transfusions. This setback was devastating; it was another week before I could return to my rehab program.

When I was back on track again, able to practice sitting and standing, moving my left hand and arm, my physical therapists encouraged me again to venture out on short trips. I felt I wasn't ready, but they insisted. Part of my reluctance stemmed from the simple fear that I would be unable to navigate a busy intersection in my wheelchair. Part of it, though, was pride. I did not want to be seen in my debilitated state. The psychologist repeatedly explained that rehabilitation and recovery are separate issues. I would have to get over this idea that I was going to walk out of the hospital and go back into my life on the outside just as I had known it. The sooner I learned adaptive behavior, the better off I would be. The average stay at Sister Kenny is four weeks. I was already beginning my third.

Over the next two weeks, I went with other Sister Kenny patients to the Walker. We visited Mall of America. Friends took me to a lecture at the Minneapolis College of Art and Design. Larry and I went on a trip to the Mississippi River, and attended a wedding. I began to accept my physical limitations. Harder to accept was how society deals with the disabled. I was routinely referred to in the third person and assumed to be totally helpless. I was pushed aside in elevators, avoided by frightened children. Even old acquaintances couldn't disguise their consternation in my presence, often gaping at me in openmouthed pity. I returned from many of these trips embarrassed and exhausted.

Together with my doctors and therapists, Larry and I set a goal to be home by my birthday, June 24. I was given an afternoon pass for a trial run. Crossing the threshold for the first time in weeks, I broke down in tears, thrilled to be there but intimidated. I had learned how to walk up six stairs so as to be able to get in the front door. Now I had to climb eighteen stairs to get to the second-floor bedroom and bathroom.

Back at the hospital, I tried to pack in as much practical training as I could, always careful not to overdo it, which could set me back days. I tried to extend my tolerance for sitting up in a chair. I learned how to bathe myself unassisted. As a final "test," a dress rehearsal of sorts, Larry spent the night with me in an apartment on the medical ward. All of my fears that our sexual relationship would be profoundly altered were gently allayed. The surgery had not left me impotent.

On the day of my homecoming Larry and a small group of my closest friends presented me with a birthday cake. I found it difficult to express how much their love and encouragement had helped me work toward this goal. I needed them more than ever now. Whatever independence I had earned at the Institute didn't translate to the world. Each trip, even a simple outing to the grocery store, became a lesson in overcoming unforeseen obstacles. At movies or the theater, I'd often be shuttled off in my wheelchair to an empty back corner. I faced countless inaccessible bathrooms. In large crowds, I would find myself fighting off resentment against people who took their physical prowess for granted.

Friends were always happy to drive me here and there, to take me on walks and to therapy. My mother and two of my sisters came from Chicago and San Francisco to help with household chores. I was grateful, but at the same time I hated constantly asking them for help. The more generous people's attentions were to me, the more acutely I felt my lack of independence. I was a child again, not knowing how to ask for what I needed, petulant when I sensed abandonment.

Depression overwhelmed me in ever increasing waves as my progress slowed. The miracles seemed finished, changes were infinitesimal. A couple of times each week, Larry would surprise me with "honeymoon" dates to keep up my spirits; we explored places we'd never had time for before. I'd lived in the Twin Cities eight years and had never really been a tourist. We had picnics by the lakes and visited Como Zoo, the Minnesota History Center, the Lake Harriet Rose Gardens, and the St. Paul Cathedral.

Talks with my friend Jack, who'd been injured in a surfing accident twenty-five years before, and Stephanie, who dealt with chronic pain from birth defects, helped me to accept the realities of long-term recovery. Larry and I began going to the Wasie Gym, a specially equipped facility for people with physical disabilities. The wheelchair athletes who worked out there were particularly inspiring and just as aggressive as any gym rats.

I continued outpatient therapy three times a week throughout July. Motor skills, coordination, balance activities, stretching, and strengthening exercises were fine-tuned and expanded. I went from using a small-based quad cane with four tips to a single-end cane with a padded grip. As my left foot became stronger, I began to tentatively walk without the brace that had been necessary to propel my foot forward.

I ventured out into the world every day, first going in to work for weekly meetings, then attending performances, panel discussion, parties, and gallery openings. I was glad to see my colleagues again but unnerved by their alarmed expressions when they watched me move about the office. As I got stronger, I was able to use the cane more often. I noticed that people treated me differently: They assumed I was more stable with the cane than I was in the wheelchair, although quite the opposite was true.

In August I received good news. Not only had the surgery "cured" the benign tumor (an MRI showed no signs of it), but my doctors were confident that with daily exercises and therapy I would eventually regain most of the motor skills in my left arm and be able to walk without too much assistance in the coming months. The numbness in my right side might or might not be permanent.

Just as I had blindly assumed that I would stroll out of the hospital fully restored physically, I had also deluded myself about the ease of returning to work full-time. It was not easy. It took me ten times longer to walk down the hall to a meeting. Unable to drive, I couldn't go off-site to plan upcoming events with community partners. Full days at work depleted me, nights in the theater had to be rationed, and social gatherings with friends were nonexistent. I became haunted by the John Killacky whom, I now knew, I'd left behind forever. Larry was particularly patient during this time, and together we made a ceremony out of burning all my Walker publicity photographs. The idea was to kill the old John Killacky, the hyperactive and driven overachiever, so that a new person could emerge.

I began spending my lunch hour walking in the Minneapolis Sculpture Garden. Coworkers who joined me often commented on how seldom they'd taken the time to enjoy their own outdoor garden. Slowlyas slowly as I walkedI began to piece together the mosaic of my new life. Slowly I grew less frustrated with my meandering pace. Patience, never a virtue of mine before, became my constant companion. I began to travel again, but not without meticulous planning to deal with airport logistics. On a trip through Chicago I was left in my wheelchair at the gate and missed a connection. I waited two hours for the next plane, determined not to let it upset me. It will happen again.

As I sat waiting in the airport, I realized that I had learned a great deal about grace. Larry's unwavering support and the selflessness of friends filled me with awe. Never have I felt so loved. Sharing my pain, letting down my defenses, putting my fate in the hands of other people, surrendering control wasn't as scary as I had always imagined it would be.

Saying good-by to the old John Killacky was a critical turning point. I had changed, and yet, whatever body I inhabited, I had the same fears, insecurities, strengths, and weaknesses. Even as I labored to reconstruct my body and draft a new identity, I knew deep down inside that while the man in the publicity photos was dead and gone, the essential John Killacky had never really left.

Reprinted from the November 1996 issue of Minneapolis/St. Paul Magazine by arrangement with the author, who retains copyright.

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John R. Killacky co-edited with BENT editor Bob Guter the anthology "Queer Crips: Disabled Gay Men and Their Stories," finalist for a 2004 Lambda Literary Award. 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/May 2004