JOHN R. KILLACKY
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.
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.
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 somethingor yes,
the films were inconclusive?"
She replied, "I really can't say."
We learned that an ependymonaa
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.
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?"
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. 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
In therapy I worked alongside other patients dealing with strokes
or brain and spinal injuries. At first I resisted being in a group
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
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
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
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
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.
Let us know what
you think of this BENT feature.
John R. Killacky
co-edited with BENT editor Bob Guter the
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