Coming Face-to-Face with the Unimaginable

Magazine Issue
March/April 2007

My health was so good for so many years that I took it for granted. Rollerblading, bicycling, walking, and working out were integral parts of life for me and my wife, Faye. We marked my 50th birthday in Scottsdale, Arizona, celebrating how young I felt by basking in the sun to the strains of a steel band and singing karaoke at night.

I spent my 51st birthday on a pass from the hospital, having a beer with my wife and friends at the aptly named Train Wreck Saloon, celebrating that I was still alive. I had no hair or eyebrows and carried a portable IV pump slung over my shoulder to stay on schedule with my chemotherapy. I was in the middle of a 16-week experimental, inpatient chemotherapy treatment —with 12 cranial radiation treatments thrown in for good measure—for acute lymphoblastic leukemia (Burkitt’s type). When I was diagnosed, in April 1996, this rare subtype of leukemia hadn’t been successfully treated in any American adult.

Leukemia is a form of cancer for which there are no known risk factors. My doctors said it results from a random mutation in a white blood cell that has nothing to do with heredity or lifestyle—just one of life’s random sucker punches.

This kind of event is most people’s worst nightmare: a catastrophe that derails our well-planned lives. For the last 11 years, I’ve been a living testimony to what life can do to you while you’re making other plans. The catastrophic changes in my life were ones I never would have imagined being possible. Had I imagined them, I never would have thought I could endure them. Yet against considerable odds, and as a person of ordinary temperament, I’ve found a way not only to endure, but to thrive.

Living Through Disaster

When we arrived at the hospital on April 12, 1996, the doctors talked in whispers to Faye and shook their heads as they contemplated treating a disease so hopeless that, prior to the experimental treatment that had just been developed, they’d have just made me comfortable while I died. From what little I knew of both leukemia and chemotherapy, I was deeply frightened.

The research treatment protocol I underwent veered consistently toward excess, utilizing lots of different drugs, with repeated dosing. The object was to kill all of my white blood cells—leukemic and otherwise—repeatedly, allow a few days for them to regenerate, and then kill them all again. My doctor described the approach bluntly: the hope was to kill the cancer without killing me.

The treatment cycles consisted of 5 days of chemotherapy followed by 12 days for my white-cell counts to go to zero and then start to regenerate. Each five days of treatment started and ended with an injection into my spinal canal of a drug called methotrexate to kill leukemic cells that could migrate to the brain and cause a quick, painful death. The macabre tone of the treatment was captured by one of the intravenous drugs that was draped in black plastic and administered with lights out and shades drawn because of its sensitivity to light. Throughout my chemotherapy, I was beset by cycling fevers that made me shake like a jackhammer.

By early June, I was declared in remission, meaning that there were no leukemia cells in the particular sample of bone marrow extracted. However, it would take only one leukemic cell anywhere in the bloodstream for the cancer to repopulate. Only after two years of remission would I be considered cured. Ten more weeks of treatment still lay ahead.

In June and early July, a series of complications developed that, in retrospect, were milestones on the path to catastrophe: weakness in both legs, numbness in my left groin and fingers, and problems with bowel incontinence. By mid-July, I was too weak to walk without a walker and was losing the ability to urinate. On July 18, I was up all night with a painfully distended bladder. The next day, I went to the ER and was catheterized. I was given a transfusion because of low blood counts and deemed ready to go home. When I attempted to get up, I collapsed in a heap and couldn’t move, precipitating yet another hospital admission. To be suddenly incapable of doing things I’d done all my life, like urinating and getting to my feet, was unspeakably terrifying and bewildering.

I recovered sufficiently to be discharged on August 8, able once again to get about on a walker. My symptoms were presumed to be part of a severe peripheral neuropathy involving my legs, bladder, rectum, and anal spincter that would resolve itself with recovery from the treatment. Faye and I hoped that walking with a walker was the foundation from which we’d build toward a return to normal functioning.

I awakened on August 16 unable to feel any sensations in my buttocks. I was so used to setbacks that I didn’t panic at first. But as the morning progressed, I lost movement and sensation in my feet, legs, and torso. Whatever was happening, it was beyond anything I’d experienced, and I was terrified. I was rushed by ambulance to the ER and admitted to the ICU. The events of the next 24 hours were the most surreal and frightening of my life. Myelitis, an inflammation of the spinal cord at one level that blocks neurological function everywhere at that level and below, was ascending up my spine with the lethal potential to reach my brain stem. With megadoses of intravenous steroids the doctors eventually were able to halt the myelitis and even gain a little ground. However, when the dust cleared, I was paralyzed from the sternum (T7) down. The explanation that eventually emerged was that my spinal cord had probably been injured at multiple levels by the methotrexate injections.

Initially, Faye and I simply couldn’t accept that I’d never walk again. I was told that failure to have any sensation or movement below my chest after six weeks would be conclusive that the paralysis was permanent, so each day included tests of sensation by pinprick, a finger, or a pen at various points of my body. I often had dreams in which I discovered that I could walk. Others in the dream didn’t seem to notice the significance of my walking, and I had to call their attention to it. Then we’d all rejoice. These dreams stopped when the six weeks were over and my hopes of walking were extinguished forever.

The sudden onset of paralysis gives you no closure. There’s no chance to say good-bye to walking. There’s no last shower, no last workout, no last dance, no last night of lovemaking. You lose so much that you can’t take it all in at first. Every other setback had brought assurances of recovery from the doctors, but not this one. I was numb with grief and “paralyzed” with fear.

As time went on, the overwhelming sense of loss yielded to specific daily confrontations with things I couldn’t do at all (stand up and greet my wife with a hug, get out of bed, get dressed, get into my wheelchair), or that were severely compromised (have sex). It wasn’t only the losses that confronted me, but also the inescapable fear of my own vulnerability. I can’t be left safely alone at home in bed. I’m susceptible to illnesses I never thought of as a walking person, most of which have the potential to kill me. The fear for me is chillingly symbolized in my repeated experiences of taking an elevator and reading the sign that says “In case of fire, use the stairs.” In other words, there’s no plan for me: I can die in the elevator or wait for rescue and risk burning to death.

By the end of the fall of 1996, I had another permanent setback: my shoulders developed avascular necrosis, a deadening and softening of the bone that forms the ball of the shoulder joint, the result of the megadoses of intravenous steroids used to arrest the progress of the myelitis. My shoulders could no longer bear weight; hence, no more wheeling a manual wheelchair, no more transferring myself into and out of the wheelchair, no more rolling myself over or pushing myself to a sitting position in bed. Until a year later, when I got a motorized wheelchair, I had to be pushed by others for all but short distances. Now I was too crippled to use even the meager skills I’d learned in rehab.

For the balance of 1996, all of 1997, and nearly all of 1998, I had multiple complications that put me in the hospital as much as I was out: shoulder replacement surgery to reduce pain from the necrosis in my left shoulder; six weeks of inpatient rehab for the shoulder; discharge from extended care with an undetected urinary tract infection that led to septic shock and two weeks in the ICU, and so on and on and on. One of the severest tests came after living for a year with a disabling pressure ulcer on my bottom that restricted me to cycles of two hours out of bed followed by two hours in bed. At the end of a year of this futile treatment, it came down to six months of total bed rest.

I couldn’t imagine six solid months in bed. Was I going to mope through this time and burden my wife with negativity or was I going to make the best of it? Faye, as always, was 100 percent on board with making the best of it. She set the social wheels in motion. Friends streamed in daily for bedside visits or dinner parties. It was hard to be depressed for long. On my end, I located tapes of Bill Moyers’s Genesis series and his interviews of Houston Smith. I developed a passion for Ken Burns’s documentaries and movies from a recently released Top 100 list. I had bedside tutoring from pastors. In short, Faye and I did what human beings do better than any other species: we adapted.

The Paralysis of Fear

Paraplegia is actually my second encounter with paralysis. My first was with the paralysis of anxiety, worry, and avoidance of life’s inherent challenges that I’d already experienced throughout my life. I was forever being dragged kicking and screaming from the quicksand of obsessive worry into the necessary next step of life. Anxiety about the draft in the late ’60s led me by default into the ill-fitting world of secondary education. My obsessiveness about a career choice led me to hang on to a dead-end job in education until the rug was pulled out from under me. Fortunately I was in my own personal therapy and so intrigued with the process and desperate for vocational fulfillment that I took the leap to pursue a doctorate in psychology at the age of 32.

My personal emotional development has been one of anxiety gradually yielding to excitement with life. Paraplegia has been my advanced training in anxiety management. It’s confronted me time and again with raw, survival fear. Now when I face challenges involving mere neurotic fear, I’m able to get past them.

When you’re paralyzed, you’re immediately catapulted beyond any belief that life is controllable. The uncertainty of life stalks you relentlessly. By the fall of 1998, I’d pretty well learned the lesson of not taking life or any of its particulars for granted. I knew that two-thirds of married paraplegics lose their marriage. I knew that I’ll always be a breath away from a disastrous medical breakdown. I’m a devoted wife away from the nursing home and a pressure ulcer away from having to be hospitalized for months at a time. I’ve had to let go of the illusion of control and surrender to life’s flow.

There is, however, another side to all this uncertainty: call it the Grand Reframe. The flip side of not being able to take anything for granted is that I appreciate more acutely and exquisitely what I formerly overlooked. Being out of bed. Being outside on a fall day with my skin alive to the breeze. Being home from the hospital in my own bed with my wife next to me. Faye’s touch on my shoulder as she passes by.

Anyone who’s recovered from a bout of the flu knows it’s a good feeling to be well again, but few people get to experience repeatedly the profound thrill of being alive again that living through a catastrophic illness provides. Every little detail of life has significance: a clear winter night with a full moon; the softness of a kiss; Faye’s laughter. This kind of awareness has made it hard to be depressed for long—depression is more of a breakthrough phenomenon, which catches me off guard.

Choosing Optimism

Despite everything I had no choice about, I did have one fundamental choice to make: my choice of a “stance” toward life. Would I find joy in the options that remained, or would I succumb to grief over what I’d lost? I chose joy and, except for occasional times when grief simply overwhelms me, I’ve stuck to it doggedly.

The stance may not be new, but how I got there was far from automatic. There’s definitely no end to what you can obsess about with both leukemia and paraplegia, but I was determined to master optimism. I read everything I could get my hands on about bad things happening to good people and numerous autobiographies written by people coping with disability. I did a thorough self-study of the Book of Job. I got a solid hold on my faith—belief in the ultimate goodness and authority of God—which generated hope for an uncertain future. Faith became the foundation for everything else that I’d learned about optimism.

Another factor contributing to my changed perspective was the isolation of many nights in the hospital, which pushed me toward my own inner resources. I had the chance to move through self-pity, anguish, and fear. Worries that were bothersome but not of ultimate significance, like financial worries, would take center stage for a while and then dissipate. What sifted out from the dross of such worries was the refined gold of the things that really mattered to me in life: faith, loving and being loved, and vocation.

Paradoxically, it was against the backdrop of the six months of 24/7 bed rest at the end of 1998 that I began thinking about giving up my disability income and returning to private practice. Why did I decide to return to the practice of psychotherapy? Practically speaking, it’s a sedentary profession that I could do from a wheelchair. I could practice from an office in my home and have access to supportive care and medical services that help me function. I was buffered financially by my Social Security Disability Income—I could do a return-to-work program that would give me a year of building my practice while receiving this financial support.

These were all necessary but not sufficient conditions for my return to practice. Of more import was the fact that my life had been out of balance since the spring of 1996. I’d been continually on the dependent and receiving end of things and had little sense of contributing to the welfare of others. My suffering had prepared me abundantly for feeling and expressing compassion, but I had no effective outlet for doing so. Psychotherapy is a vocation in which compassion is central to the process. In many callings, competition is central and compassion is a hindrance.

I reentered the practice of therapy with humble expectations. Paraplegia teaches you humility. I was unfettered by illusions of brilliance. I just hoped I could make a go of it from a wheelchair in a home-based practice. From the perspective of my bed, it was hard to imagine how fulfilling it was going to be to do psychotherapy again; however, I had only to have my first session with a client to know that returning to practice was the right choice.

Getting Back to Work

I was self-conscious about getting back into practicing therapy and had many questions and uncertainties. Would I remember how to do this after a three-year layoff? Would clients be put off by the wheelchair? Would they be put off by coming to my home? As it turned out, I didn’t have to worry about any
of that.

My first client’s story resonated with my new view that life is what happens when you’re making other plans, and all things turn to good for those who have faith. She was a businesswoman who’d been successful in a high-level corporate job, with no plans to make a career change. She’d returned from a medical leave to find that her job was being eliminated. She knew enough about her rights to know that she was being treated unethically.

We were a good fit. We were both
second-class citizens—she African American, me disabled. Her husband was disabled by a back condition. I could relate. Her mother was struggling with cancer. I was a cancer survivor. She had a strong faith in God. I have a strong faith in God. Despite her strengths, my client was highly anxious, depressed, and had post-traumatic symptoms that included nightmares that her boss was cutting off her fingers. She was in desperate need of a stance to provide a positive outlet for her anger at her employer and to move her out of the role of victim. We found the stance: “The best revenge is a good life.” She filed a suit against her company, and began developing a business plan for her own consulting company. She was awarded a settlement and her business took off.

Some months later I ran into her at a department store. She recalled the importance of “the best revenge is a good life” stance and recounted a triumphant story of presenting at a conference to a packed house with her former boss sitting uncomfortably in the audience. I was delighted to start my return to work with a client for whom so much of my experience was an asset. And it was good to be on the giving end of things for a change.

Another of my first clients was a likeable and accomplished young health professional who sought my help after being caught by his wife looking at online pornography. He’d grown up with an alcoholic father whose behavior filled him with quiet rage and embarassment. He learned to keep himself under tight control, maintain distance from his family, and lead a fiercely independent life. His need to be distant and in control interfered with having an open, intimate relationship with his wife, and expressed itself sexually in pursuing gratification in the emotionally safe world of Internet pornography. I saw a “childhood curse” disabling this man from having a successful marriage and family. The stance that broke the spell was the continual assertion that he wasn’t responsible for his father’s behavior. He didn’t have to take on his father’s shame and didn’t have to hide from or change his father’s behavior to be okay. He was free to live his own life. Cursed no more, he’s now enjoying his roles as a husband and father to a newborn son.

I’m a person of ordinary temperament who’s faced down extraordinary experiences. So when I’m in the therapy room, I carry with me the confidence that my ordinary clients can get through what they are struggling with. Getting past my own suffering has given me courage to go into the depths of other people’s suffering without fearing what might get stirred up in them or me.

I work with a middle-aged woman who has a disabling combination of medical and psychological symptoms. A survivor of physical, verbal, and sexual abuse in childhood, this woman was able to integrate multiple personalities in a prior therapy. She came to me devastated and suicidal after being precipitously and mysteriously left by the love of her life, a woman with whom she’d had a multiyear platonic relationship. Suicidal and self-mutilating, she was shoplifting (a survivor response), and had migraine headaches and fibromyalgia. Many times in the early going I dealt with crisis calls and crisis sessions, during which she was convinced that the only solution for her suffering was to kill herself.

Before my own struggles, I don’t believe I could have conveyed the confidence and hope that were repeatedly called for at these times. However, knowing from my own experience that ordinary people can get through extraordinary struggles and that she herself had already done that by integrating multiple personalities, I stolidly reassured her that she’d make it. I believed in the woman and her strengths, and believed that she could find her way to a meaningful life and to the love and connectedness that she so desperately desired. Because of my own pain, I was able to sit patiently with her in her pain without having to “fix it.”

The stance for this client has been to continually work toward connectedness with others: her priest, fellow choir members, her “adopted family” of colleagues and acquaintances, far-off friends who were part of her recovering multiples group, and myself as an unconditionally accepting presence. After years of therapy, despite continued medical and financial hardship, she’s no longer suicidal, and self-injury is a thing of the past. She has a robust and growing support network and has reconciled with her mother.

The physical and emotional aspects of adjusting to paraplegia have given me a much clearer template for how adjustment to life change happens. This template gives me confidence about the process of adjustment clients go through. There’s a profound and alienating recognition of crisis, accompanied by heartbreak and denial; attempts to move forward amidst storms of complications and setbacks; more heartbreak and setbacks; then a gradual sense of the abating storm, of settling waters, of a steadier place from which to get one’s bearings; and, finally, an openness to new possibilities.

My body dictated the pace and the focus of my own adjustment. I had a choice about attitude, but I wasn’t going to change the process. I find often that the circumstances my clients face are similar: they’re going through a process dictated by their grief, depression, anxiety, job loss, or life transition. They can try to fight the process and postpone the inevitable or they can look at it for what it is and struggle through it authentically. My clearly demarcated process of adjustment to paraplegia helps me keep the whole picture in mind. I can normalize and validate what’s happening in the present and have confidence in a future that’ll make use of all the client is experiencing.

When I wheel into my office at 10:00 a.m., I’ve had three to four hours of up- close-and-personal experience with my disability. I’ve had an attendant doing everything it takes to prepare me for another day in the wheelchair—bathe me, dress my wounds, put my clothes on in bed, do my range of motion exercises, lift me with the ceiling lift, and then position me in my chair. To enter into the therapy room is an opportunity to leave all that behind, get outside myself, and focus totally on someone else. At that point, even the most difficult client seems inviting. The therapy room is both my workplace and my sanctuary. It’s a place where I’m not disabled. When things go really well with a client, I may even feel like I’m dancing again.

A Final Blessing

The ultimate fruit of all of Faye’s and my efforts to make the best of what life has dealt us came two years after I reentered practice, with the adoption of 6-month-old Christina from Ukraine. We’d committed to having a child together eight years earlier on our honeymoon. Unable to conceive with her first husband, Faye had channeled her immense capacity for love and laughter into teaching schoolchildren, but the inability to have a child was a source of hidden but enduring sadness. When my cancer struck, we’d already spent two years attempting to conceive naturally, gone through the early stages of fertility treatment, and were preparing to try in vitro fertilization. The leukemia and paraplegia rendered me infertile. With that, the dream of having a child seemed to have died.

When I’d recovered to the point of relatively stable health and achieved reasonable financial security, the dream reemerged. In November 2000, Faye asked if I’d consider adopting a child from Eastern Europe. A choice that I previously could have stewed over for months became a spontaneous leap of faith and love. I actually liked that this was a “crazy” thing for two people in our circumstances to do. The very craziness of it spoke to me of life as I now understood it. From recent experience, I knew that I was no safer by being cautious than I was by taking a wild swing at something as absurd as adopting a baby at 55 when I had a serious disability.

On January 6, 2001, we began the paperwork for adoption. Unbeknownst to us, our daughter-to-be had been born in Ukraine three days earlier. While we went through the hoops of the adoption paperwork, our daughter would spend three months in a Ukrainian hospital and three more months in an orphanage. Faye adopted Christina on July 5 in Lotokova, Ukraine. Our family was “born” at St. Louis’s Lambert Airport on July 12, when I held Christina in my arms for the first time. She was beautiful, wide-eyed, tiny, and helpless. When I held her, I wasn’t disabled—I was just a father cradling his baby.

Nothing speaks of new life like a child. “Christina moments” are full of life for me: having her fall asleep on my shoulder at her first Thanksgiving dinner; listening to her endearing mistakes on the way to fluency (stories start at the “gebinning”); playing hide and seek in the house (ever tried to hide in a 300-pound wheelchair?); seeing her rush to the door excitedly when I return home.

It’s for the love of life that I sometimes peer into the future with trepidation. What I have could all be taken away. If Faye were to become disabled or die, I couldn’t live independently. A pressure ulcer on my bottom could disable me long enough to shut down my practice. A chest cold could turn into a lethal case of pneumonia. A urinary tract infection could go septic and cause kidney failure or a heart attack.

People with spinal-cord injury live at the edge of the nursing home. I’ve been there and don’t want to go back. But having lived my life predicting lots of things that didn’t happen and being blindsided by what did, I choose not to dwell on future catastrophies. After all, thinking about those would only paralyze me, and I’ve had enough of that.

J. Gibson Henderson

J. Gibson Henderson, Jr., PhD, is a psychologist living near St. Louis, Missouri, and adjunct faculty for the Department of Community and Family Medicine, St. Louis School of Medicine.