The book was released on March 8, 2004. It's available from No Limits Communications,
or by calling toll free 888-850-0344, ext. 209 to purchase it or to request a review copy.

The Water’s Just Fine
By Gary Karp

There was only time to respond from instinct, spreading my arms as I fell to keep my balance. It felt like I’d landed flat on my back, but my friends who had the horror of witnessing it say that I landed on my butt first. That explains why my back broke at T12/L1, where the bottom ribs meet — and so reinforce — the spine. I was instantly unable to move my legs.

There had been a major storm in Southfield, Michigan, where I grew up just outside of Detroit. A neighbor had hired us to clear his property. One tree needed to be cut down, so, on the morning of the Fourth of July, having never handled a chain saw in my eighteen years of life, I stood twenty five feet up without a belt, about to sink the blade into a large upper branch that had to be trimmed off first. I had barely cut into it when the branch broke of its own weight, the tree shifted violently, and now I have that frozen memory of being in the air, aware I was falling.

There was a huge outpouring of support from my family and friends during the subsequent hospital stay — basically a nonstop gift- and food-laden party. Following five hours of surgery to rebuild my spine, I had woken up in a circle bed — a Ferris wheel kind of thing, with the bed as the diameter. It was used to rotate me between back and belly to prevent pressure sores. We performed the operation every four hours, day and night, for six weeks.

I expected to recover. No one claimed anything to the contrary, except my orthopedic surgeon, who, in answer to my asking how long it would be before I could be back on the ski slopes, suggested I deal with first things first. I was left to operate on the assumption that I would recover.

I was at last getting what I’d been craving all my life (with the brief exception of my Bar Mitzvah) — being the center of attention. The baby of three boys, I envied my big brothers their privileges. So, I played right into being the young hero, basking in the waves of approval for my spirited, positive response to my injury.

At the Detroit Rehabilitation Center, the assumption was that I was going to work hard and be independent. The weightlifting was so intense that to this day I have stretch marks on my shoulders. The skin couldn’t keep up with the expansion of my muscles.

A rehab social worker surprised me saying, “We’re all waiting for you to get depressed.” That wasn’t my style. My approval-seeking habit didn’t allow for being openly sad or angry. It’s not an effective way to get people to like you. Besides, I felt good about myself for the way I was succeeding at the work of rehab.

Seven weeks later — thirteen after the injury — well-trained for life using wheels, I came home to the news that, the day before, my father was found in his car on the side of the road, dead of a heart attack. He was en route to his new drugstore, due to open in two weeks. The year before he had sold the store he owned for twenty-five years, in a working-class neighborhood where he was honored as a friend and advisor. I had worked there since I was eight, absorbing my father’s charismatic, strong example.

I barely grieved. It was another event to just take in, to move through. I was too deeply in the mode of getting back into the world, and too emotionally protected to even feel the full impact of the news. Denial was undeniably my main coping mechanism.

I also adapted by doing — getting back on the road with hand controls, going to outpatient therapy, starting architectural school, having missed only the fall term, and renewing my efforts to find the love of my life. I just got myself out there, thinking of it as being like jumping off of a diving board into cold water; the trick was to get yourself in the air, then you have no choice but to adjust.

My disability identity felt foreign. In public, in my mind, I would think to the people around me, “But I’m one of you! I was walking just a few months ago!” I was uncomfortable with feeling like I looked “disabled,” so I compensated with fast wheeling and jumping curbs. I couldn’t bear to be seen being pushed in my chair in public.

Periods of depression began to seep through my heroic façade, as I blamed my paraplegia for my growing unhappiness and loneliness. I had leapt out into public, but was very self-conscious beneath the surface. I was dating, chasing after an idealized love, but expecting rejection. I was awash in unrealistic fantasies of stardom — based reasonably enough on my talents as a musician who started to play at seven and perform at fifteen — but afraid the wheelchair would cost me a spot on the world stage.

In a gradual dawning, rather than a huge epiphany in a moment I can identify, I realized I had been struggling with these feelings before I had the convenient scapegoat of my paralysis. My disability had its own issues, and I would need to separate it from what was just about me and the lessons I needed to learn from my life in its own right. I saw that blaming my paraplegia for my unhappiness would mean a life sentence of unhappiness, and that was just unacceptable. This was a key piece of my adjusting to the cool waters of my life.

While the underlying tone of my internal life was a struggle, I was completely independent, enjoying the stimulation of architectural school, having an active social life, and being back on the coffeehouse performance scene, singing and playing guitar. Life was a mix.

My mother and I had remained in our two-story house, where I’d been dragging myself up and down the thinly carpeted steps to my upstairs bedroom. Being six feet two and thin, and with an atrophied, bony butt, this was very unhealthy for my skin. Plus, my denial skills extended to neglecting my weak bladder as I avoided the extra work of using the bathroom, allowing too many catheter slips, exposing my skinny bottom to lots of bacteria. The result?; near chronic pressure sores, which would cost me two extended summer stays in rehab.

In the meantime, I had moved into my own apartment at school (no more stairs to sit on), started using a new external catheter with a double stick band that protected me from slips, and become more vigilant about preventing catheter slips. At the inspiration of the owner of a vegetarian restaurant where I’d been performing, I left my meat and sugar diet behind, discovering that broccoli was indeed delicious and that there were far more satisfying and nutritious options than white bread. I’d already eaten a lifetime’s quota of sugar at Karp Drugs.

I had been denying the needs of my disability at my peril. Now I meet my disability on its own terms. Accepting my body and its priorities opened up my options and extended my independence.

In 1979, six years after the fact, I learned that I had not been told the truth about my father. He had, in fact, taken his own life. He had checked into a motel, and taken a potion which he knew from pharmacy school would accomplish his goal.

It turns out that my charismatic, strong, ex-Navy officer father had lived his life wrestling with deep insecurities, too. I’d always thought that the inner turmoil I felt growing up was a weakness, compared to my father’s apparent capacity to work unselfishly, demanding little for himself.

Paralysis only gave me more cause to buy into the image, this impossible way of being. Independence, being a wheelchair showoff, my fight to make my college campus accessible, the music — all of it gave me a false sense that I could indeed hold it together like my Dad.

So, learning of my Dad’s suicide was crushing — but it was liberating. I had a right to my fears and my grief, after all. It would still take years — and support from some good psychotherapists — before I would learn to truly trust what I felt and allow myself to truly grieve and cry when my heart needed to.

I have never felt to blame for my father’s choice. My injury was only one factor in the overload of stresses he faced in his life. But to the degree he believed that paralysis would ruin my life, I see him as a victim of the widespread misconception that disability inevitably means a life sentence of loss and struggle. His loss motivated me to embrace my disability even more deeply — in all its crazy glory. And I wish he were here to see that he was wrong to doubt I would live the full and active life I have.

My mother never had such doubts. In the emergency room, I heard her say to the doctor that I was not someone to let something like this stop me. In her grief, she still managed to encourage me and keep the household together. Her support carried me through all of this more than I’ll ever fully know, but ultimately I had to get out on my own, despite her desire to escape her own loneliness by keeping me around.

After graduating in architecture, and two brief jobs in the profession, I entered a career in graphic design as part of the early wave of computer graphics in the early 80s. I fled the suburbs to downtown Detroit where I found the variety and cultural richness of city life much more stimulating. In 1984, when I was twenty-nine, I accepted a job in the San Francisco Bay Area to manage the computer graphics department of a presentation production company. My educational and professional lives affirmed that my disability would not prevent people from recognizing my innate abilities and passion. But I was still alone.

A virgin at eighteen, raised on images in Playboy, I’d been anticipating my first sexual experience in a big way. With my genital sensation and capacity for orgasm reduced, I was afraid I wouldn’t be able to satisfy a partner, even though I still felt a very clear sense of my sensuality. Still stuck in my idealized view of perfect love, I was lonely, and insecure on the sexual approach — until my first adult relationship at twenty-one removed any doubt that I could please a partner, that I could be loved. Although it ended painfully, I had made a major transition through sexual doubts, and past the fear that my disability was going to mean lifelong frustration with romance.

Soon after moving to California, when I was twenty-nine, in the heat of the early passionate stage, I married a woman from back home with two sons, before we had the chance to prove our fitness as life partners. I was naïve about the real demands of daily life in relationships. It was an ill-advised quest for an instant family, a way to feel more like an adult — rather than actually growing into one. It was a disaster, and ended a year after they came west to join me. Undeniably, part of this experience was a quest to compensate for how I felt compromised by my disability.

Now I know the difference, thanks to my wife, Paula, who I married in September, 2003. She didn’t see “Gary in a wheelchair” when she met me. She felt our spiritual and sensual resonance, and the potential for what we could achieve together in the space of a real — and realistic — loving relationship.

I was ready for her, having grown through my previous relationships, my work in psychotherapy, and through meditation work I have done since 1987 with a spiritual community called Arica. There I gained tools to increase my ability to observe and understand my life free of judgment. A lifelong process, to be sure.

I had also learned juggling, and got connected to a new community of people infused with a creative spirit. It was great exercise, a lot of fun, another outlet for my performance impulses, and a place where I could excel , where my disability was largely transparent.

At the start of this disability journey, I was a youth wanting attention. As I’ve grown with my disability, my priorities have matured. The point is not to seek attention, but to seek my potential for the good of others. I would not have been capable of making this distinction until I had broken through my unconscious need to compensate for my disability — and begun to transcend the illusions and internal wounds of my youth.

I find it difficult to separate my adjustment to paralysis from my own personal issues, from the karmic map of lessons I believe I’m meant to face in this lifetime. All of these experiences in my romantic, professional, family, and social life have fueled the fire of my personal evolution. Clearly, paraplegia has added fuel to that fire. It is simply integrated into the man I am today — and am still in the process of becoming.

Gary Karp and his wife, Paula Siegel, live in San Rafael, California. He is the author of Life On Wheels: For the Active Wheelchair User, a comprehensive guidebook for wheelchair users, and an active public speaker. Gary and Paula look forward to making a home for a Labrador Retriever in the near future.