Read an Excerpt
The First Decision
As the old saying goes, you better know what you want because you might get it and you've got to accept it. Whether you succeed or whether you encounter adversity you always have to believe in your worth as a person. That's what counts.
-Remarks at a success seminar in Portland, Oregon, February 6, 2001
When I made those comments in 2001, it was no longer difficult for me to say to anyone that you have to believe in your worth as a person. But in the intensive care unit at the University of Virginia on June 1, 1995, I had no such belief. Far from it. On that day I regained consciousness to find myself lying in traction, a heavy metal ball suspended behind my head attached to a metal frame secured by screws in each temple. I learned that as the result of a fall during an equestrian competition I had broken my neck just centimeters below the brain stem, and that my chances of surviving the surgery to reattach my head to my spinal column were 50/50 at best. Even if the operation was successful, I would still remain paralyzed from the shoulders down and unable to breathe on my own. I heard the whooshing sound of a ventilator as it pumped oxygen into my lungs through a long tube inserted into a hole in my neck. I've lived with that sound for many years.
The moment I understood the gravity of my situation my immediate reaction was that such a life was unacceptable, even though I knew absolutely nothing about living as a vent-dependent quadriplegic. I realized that there was no cure for spinal cord injuries like mine and that I would forever be dependent on others for the basic necessities of daily existence. My role as a husband and the father of three children would be severely compromised, because paralysis had suddenly transformed me into a forty-two-year-old infant. I thought it would be selfish and unfair to remain alive.
I remember going over my life, taking an inventory of all the cuts, bruises, broken bones, and illnesses I had weathered, ranging from mononucleosis to malaria and mastocytosis (a rare disease that destroys red blood cells as they emerge from the bone marrow). At age sixteen, I developed alopecia areata, a condition that causes patches of baldness in an otherwise healthy head of hair. Fortunately I was able to comb over the spots, and there were long periods of remission when the baldness disappeared. I was a survivor; I always had been. A part of me insisted that this situation shouldn't be any different; another part acknowledged that this time I had gone over the edge and was free-falling into the unknown.
The month I spent in the intensive care unit was an emotional roller-coaster ride created by my own inner turmoil and contradictions coming from those involved in my case. The critical care was nothing short of miraculous. Dr. John Jane-arguably one of the best neurosurgeons in the world-achieved the nearly impossible feat of reattaching the base of my skull to my spinal column with wire, titanium, and bone grafted from my hip. Under his watchful eye, a team of internists and pulmonologists cured me of ulcers and pneumonia. By the second week I was able to turn my head about half an inch from side to side, and I could raise my shoulders slightly. Dr. Jane was confident that before too long I would be able to move my deltoids, which might lead to the functional recovery of my right arm. Perhaps I could learn to feed myself, and someday be able to drive a specially adapted car. My spirits rose.
In the third week of June I was visited by Dr. Marcalee Sipski, director of the Spinal Cord Injury Unit at the Kessler Rehabilitation Institute in West Orange, New Jersey. My wife, Dana, and my younger brother, Benjamin, had surveyed rehab centers from Georgia to Colorado and concluded that Kessler was the best choice, because I would receive the highest quality care without having to go far from home. Dr. Sipski gave me a thorough examination and then told me point blank that my injury was "complete"-meaning that the cord had been severed at the second cervical vertebra (known as "C-2"). Signals from the brain would never be able to get past the injury site. Without any direction from above, the spinal cord would remain useless and the skin, muscles, bones, and tissues of my body would begin a steady progression of atrophy and decay. All I knew about the regeneration of cut or damaged nerves was that it was possible in the peripheral nervous system but not in the central nervous system.
I asked questions about the spinal cord and why the nerves inside it could not regenerate. Usually I had these conversations late at night with the residents and nurses on duty in the unit. (The days were filled with family, visitors, and the routines of necessary care.) Nobody claimed to know for certain, but the prevailing explanation was that it had to do with evolution. An animal paralyzed by a spinal cord injury would most likely be a ready-to-serve meal for another animal higher on the food chain. Even if nerve regeneration in the spinal cord was possible it couldn't happen quickly, so the injured animal would still be easy prey. Without medical intervention the victim of a spinal cord injury-animal or human-usually dies within hours or days, depending on the severity of the case. Almost every one of these late-night discussions ended with the conclusion that I should just consider myself lucky to be alive. I wasn't so sure.
Apparently no one in my little nighttime universe knew that a handful of scientists around the world had been investigating the possibility of regeneration in the spinal cord as early as the 1970s. In 1981 Dr. Alberto Aguayo, at McGill University in Montreal, using a cocktail of growth-enhancing chemicals, achieved regeneration and modest functional recovery in rats.
I only began to focus on spinal cord research in early September 1995. Until then my primary concern was survival, not only for me as a patient but for Dana and my three children, Matthew (fifteen), Alexandra (eleven), and Will (three). Their love and the love that flowed from my extended family, as well as from friends and even complete strangers all over the world, had saved me from my initial desire to end it all. In 2002, seven years after the accident and in the year of my fiftieth birthday, I look back with almost indescribable gratitude at the moment when Dana knelt by my bedside and said, "You're still you, and I love you."
Her simple but profound declaration became the basis for my autobiography, Still Me, which was published in 1998. But in describing that scene I never mentioned one critical detail: in response to my thoughts about ending my life, she said that we should wait for at least two years. Then, if I still felt the same, we could find a way to let me go. On one level, you could say she used the oldest selling technique in the book: you offer customers a free trial, a free sample, with no obligation and no money down, in order to get them on the hook. On another level, a much deeper one where our love and respect for each other has always lived, she knew that I was only in the first stage of a natural reaction to tragedy. Asking me to wait was the perfect course of action. She was giving me room, the freedom to make a choice, yet knowing what that choice would be in time.
The first decision flowed from Dana's words and the look on the faces of all three children when they came into my room. While Dana supported the option to reconsider the value of life at a point in the future, I could tell in an instant that the children wanted me to live and be there for them now. I consented to the surgery. I gave the doctors permission to suction secretions out of my lungs and use IV antibiotics to treat the pneumonia that otherwise would have caused my death. Although I didn't realize it at the time, I had chosen the path toward survival. Inner turmoil and the highs and lows caused by contradictory information would become the norm, but there would be no turning back.
First I had to learn to swallow. Even though I passed the test, the smell and taste of food were repulsive. A feeding tube was inserted into my stomach, and during the night a bagful of mocha-colored goop containing essential nutrients dripped down a long catheter into the site. Once a day a team of nurses and physical therapists transferred me into a wheelchair and pushed me down a corridor into the dayroom, where I could receive visitors and have someone in my family read letters to me for no more than thirty minutes. Then it was back to bed.
I couldn't believe how complicated this daily excursion was. First my head and neck had to be immobilized in a rigid cervical collar. Then Ace bandages were wrapped around most of my torso in order to keep my blood pressure from dropping when I sat up. Next a rigid sheet of plastic called a sliding board was positioned under my body; two nurses rolled me onto my side while two others slid the board into place. Before the transfer into the wheelchair I was gradually pushed up into a sitting position on the bed. My blood pressure was monitored every ninety seconds. Sometimes I would faint, which meant a ten- to fifteen-minute wait before another attempt. On a bad day it might take two or three tries. On a good day I could achieve sitting up with a stabilized blood pressure in about twenty minutes. When I could sit up without "crashing" we were ready for the big maneuver. The wheelchair was placed against the left side of the bed and its right arm removed. The bed was lowered to the level of the wheelchair. I lay flat again and my team of helpers carefully dragged the sliding board over to form a bridge between the wheelchair and the bed. The next step was sitting up again. If that was successful, I was gently placed in the chair and the board was taken away. After a few minutes of adjusting to being in the wheelchair, I was pushed down the corridor and into the dayroom.
As I started to face reality during the month in intensive care and six months in rehab, moments from my former life kept popping into my head. It was like a slide show, but the pictures were all out of sequence, as if they had been placed randomly in the projector. As a long plastic tube was inserted through my neck and pushed down into my lungs to remove accumulating fluid, suddenly I would be sailing in Maine. But before the next slide appeared on the screen in my mind, secretions were being suctioned up the tube. A moment or two later, Dana and I were making love; I was on a horse jumping over stone walls in the countryside; I was taking a curtain call after a performance in the theater, carrying boxes and lugging furniture up four flights of stairs into my first apartment in New York. Then it was four in the morning, and two aides had woken me up by turning me over onto my other side so that my skin wouldn't break down from lying in one position too long. Even though I was flipped from side to side every two hours at night for nearly three years after my injury, I almost never slept through it. More images flashed on the screen, usually snapshots of my most cherished memories when I was whole and healthy and free.
Psychologists came to the bedside, but their tone was often patronizing and I was usually relieved when they went away. I had to read the Spinal Cord Manual, which had little to say about patients with my level of injury. I had to choose a color for my new Sip-N-Puff wheelchair, which would allow me to drive by myself without being pushed. I had to locate a specially equipped accessible van with four-wheel drive, heavy-duty shock absorbers, and a mechanical lift. I had to approve plans for remodeling our house so that I could work, eat, and sleep all on one floor. There were dozens of other issues that had to be faced. Reality was now my new identity as a C-2 vent-dependent quadriplegic. My vision for the future prior to three o'clock on May 27, 1995, I now classified as what would have been a normal life. Everything after that instant I now had to accept as the new reality. Deep inside I was angry, and I probably still carry much of that anger with me today. But the critical factor was that in spite of myself, I was adjusting to my new life.
Dana's intuition about what my state of mind would be two years after the accident proved to be absolutely right: I was glad to be alive, not out of obligation to others, but because life was worth living. By May 27, 1997, we were settled in our bedroom in the new wing of our home north of New York City, having camped out in the dining room for more than six months. In the Gloaming, a film I directed for HBO, had premiered in late April and been warmly received by the critics and the public. I had become the spokesman for HealthExtras, a company based in Maryland that offers low-cost supplemental insurance to cover nonmedical expenses in the event of a catastrophic illness or disability. The American Paralysis Association, founded by Henry Stifel, Sr., in 1982 after his son Henry suffered a spinal cord injury at age seventeen, had now become the Christopher Reeve Paralysis Foundation. Although it was still run by a small staff in a Springfield, New Jersey, office building, the annual research budget had grown from $300,000 to more than $3 million. I was healthy enough to accept speaking engagements around the country, even though the travel required private planes, three nurses, two aides, and a coordinator of logistics and accessibility.
Today I am probably busier than I was before the accident. I have to juggle physical therapy, my responsibilities at the foundation and as vice-chairman of the National Organization on Disability, writing, producing, directing, family, friends, travel, and much more. When people ask if I am disturbed by the fact that others pity me, I have to admit that the problem actually is that everyone seems to assume I can do almost anything.