Climbing up the steps, I’ve appeared at the Oscars, spoken at the Democratic Convention, directed a film, written this book, worked on political issues, and traveled more extensively than most high-level quadriplegics. But, falling backwards, I’ve been hospitalized eleven times for dysreflexia, pneumonia, a collapsed lung, a broken arm, two blood clots, a possible hip fracture, and the infection in my left ankle that nearly resulted in the partial amputation of my leg.
I was told by so many “experts”—doctors, psychologists, physical therapists, other patients, and well-meaning friends and family members—that as time went by not only would I become more stable physically but I would become well adjusted psychologically to my condition. I have found exactly the opposite to be true. The longer you sit in a wheelchair, the more the body breaks down and the harder you have to fight against it. Psychologically, I feel I have established a workable baseline: I have my down days, but I haven’t been incapacitated by them. This doesn’t mean, though, that I accept paralysis, or that I’m at peace with it.
The sensory deprivation hurts the most: I haven’t been able to give Will a hug since he was two years old, and now he’s five and a half. This is the reason Dana and I decided not to have another child; it would be too painful not to be able to hold and embrace this little creature the way I did with the others. The physical world is still very meaningful to me; I have not been able to detach myself from it and live entirely in my mind. While I believe it’s true that we are not our bodies, that our bodies are like houses we live in while we’re here on earth, that concept is more of an intellectual construct than a philosophy I can live by on a daily basis. I’m jealous when someone talks about a recent skiing vacation, when friends embrace each other, or even when Will plays hockey in the driveway with someone else.
If someone were to ask me what is the most difficult lesson I’ve learned from all this, I’m very clear about it: I know I have to give when sometimes I really want to take. I’ve realized instinctively that it’s part of my job as a father now not to cause Will to worry about me. If I were to give in to self-pity or express my anger in front of him, it would place an unfair burden on this carefree five-year-old. If I were to turn inward and spend my time mourning the past, I couldn’t be as close to Matthew and Alexandra, two teenagers who naturally need to turn to me for advice. And what kind of life would it be for Dana if I let myself go and became just a depressed hulk in a wheelchair? All of this takes effort on my part, because it’s still very difficult to accept the turn my life has taken, simply because of one unlucky moment.
When I was in California in September 1997 for the dedication of the building that will house the Reeve-Irvine Research Center, I had another MRI. There was concern that a cyst could have developed on my spinal cord, or that there might be a cavity—sometimes the cord splits open long after the initial injury, causing further damage to the nerves. Fortunately, the pictures were clean, meaning that even after two and a half years there had been no more deterioration. This was excellent news and caused a lot of excitement among the doctors who studied the film, but I came away sobered by the comments of the chief radiologist. He showed me that the damage to my spinal cord was only one centimeter wide, and said that if I had landed with my head twisted only a fraction further to the left, I would have been killed instantly. If I had landed with my head slightly more to the right, I probably would have sustained a bruise and been up on my feet within a few weeks. I just happened to hit the rail at an angle that turned me into a C2 vent-dependent quadriplegic. The irony of it hit me very hard, although I kept my emotions to myself. I knew there was no point in dwelling on it. But now I knew on a visceral level how fragile our existence is.
Matthew and Al in the summer of ’96. I’m more proud of them than I can say.
* * *
* * *
And now I’m sailing again. But this time we’re on the Sea Angel headed for Maine. It’s nighttime and I’m at the helm. Down below Dana and the children are sleeping. The breeze is warm and gentle, and we’re sailing down the path of a full moon. For a moment I look behind me, fascinated by the boiling water just astern. Then I look a little further back and see that there are bits of foam, but the water has begun to calm down. When I look even further behind us, our wake has disappeared, and there is nothing to show that we were ever there.
I think this image comes to me out of fear that the best moments of my life are behind me. I look back longingly, hoping that the memories won’t disappear. To me they’re very vivid, but I cling to them more than I ever would have before my life changed so drastically. At forty-two, still in my prime, I took it for granted that I could look forward to many peak experiences in every aspect of my life. I rarely if ever looked back, because the present was so rich and full of promise. But now, in spite of the pain it causes me, I can’t help dwelling on the fact that so many wonderful moments are receding in the distance.
April 11, 1995. Dana and I celebrated our third anniversary by treating ourselves to a huge suite at the Mark Hotel in New York. After an evening out to dinner and the theater, we came back to the room and made love until morning. It was just as exciting as the moment I asked her to marry me and we forgot about dinner and went straight to the bedroom. There will never be another night like it.
It’s six years since we filmed Remains of the Day; fifteen years since that wonderful summer working on The Bostonians; eighteen years since Fifth of July. The last time I performed onstage was in The Guardsman, at Williamstown in 1992. How can it have been so long? Time collapses in my mind, and suddenly it seems that just the other day Tim Murray and my brother, Ben, and I were taking the Sea Angel down to the Chesapeake for the winter. I remember every detail of the trip. But Tim’s gone, and my brother and I never speak about it.
Recently I went by our old apartment on Seventy-eighth Street and stopped for a moment to remember, to absorb the atmosphere around a place that was home for more than ten years. I looked up and saw that the cherry trees we had planted on our roof garden were still there, now part of somebody else’s life. A block away the asphalt playground of P.S. 77 looked exactly the same. When he was only four years old, Matthew and I used to play racquetball there against the wall. I remember how stiff my back used to get from bending over to hold the seat of his bike as he learned to ride without training wheels on the sidewalks around the Museum of Natural History. Twenty-two years ago I threw caution to the wind and invited all my parents—Franklin and Helen, Barbara and Tris—to the opening night of A Matter of Gravity and arranged for them to sit together. Twenty years ago I sat in the middle of a black tie audience at the Kennedy Center and watched Superman fly across the screen for the first time. Less than four years ago Buck was stabled at Sunnyfield Farm just down the road, and we worked together with Lendon and enjoyed being part of a group of dedicated riders. Now when we drive by the outdoor ring and the barns, past the horses I used to know turned out in the pastures, I always look away.
I have to stop this cascade of memories, or at least take them out of their drawer only for a moment, have a brief look, and put them back. I know how to do it now: I have to take the key to acting and apply it to my life. There is no other way to survive except to be in the moment. Just as my accident and its aftermath caused me to redefine what a hero is, I’ve had to take a hard look at what it means to live as fully as possible in the present. How do you survive in the moment when it’s bleak or painful and the past seems so seductive? Onstage or in a film, being in the moment is relatively easy and very satisfying; it is an artistic accomplishment with no personal consequences. To have to live that way when “the moment” is so difficult is a completely different matter.
Reluctantly I turn away from my fascination with the wake behind us and concentrate on what lies ahead. But now the boat is damaged, I’ve been injured, and we’ve lost our charts. Everyone is fully alert, gathered together on deck, quietly waiting to see if we can navigate to shore. Off in the distance is a fa
int flashing light; it could be a buoy, another ship, or the entrance to a safe harbor. We have no way of knowing how far we have to go or even if we can stay afloat until we get there. We agree to try, and to help each other steer. In the morning, if we stay the course, our beloved Sea Angel will be tied up safely at the dock and together we’ll start walking home.
AFTERWORD
After I finished writing this book, in December 1997, I experienced the separation anxiety that occurs whenever you part with an intensely personal work—especially one you’ve lived with for nearly two years. I soon realized, however, that two equally powerful sources of satisfaction remain available to me.
The first, of course, is creative work: directing, writing, even acting. I am grateful for the opportunities that have come my way, and I’m proud of the way they have turned out. By the end of 1998 I had directed a film, written a book, and made my acting comeback as the lead in an updated version of Rear Window.
The other source of fulfillment is my responsibility to help other disabled individuals. I have been working with state and national legislators to raise the caps on insurance policies, to challenge the practice of automatic denial of equipment and services to patients in obvious need, and to do everything possible to raise more money for biomedical research.
In my conversations with scientists working on repairing the damaged spinal cord, I’ve often repeated my desire to stand on my fiftieth birthday and drink a toast to everyone who has helped me. Whether or not this will actually happen is not really the point. My purpose has been to start a ticking clock that might help motivate everyone working in the field. This strategy seems to have had a powerful effect. A leading investigator recently stated that up until a few years ago there was some kind of breakthrough about once a year but that important new discoveries are now being made around twice a month.
One of the most significant findings was made by Fred Gage at the Salk Institute in La Jolla, California. Dr. Gage has been a member of the APA consortium for many years, concentrating mostly on regeneration. But in November 1998 he published a paper that became front page news in The New York Times. He had discovered that human embryos grown in a test tube contain hundreds of cells that can be adapted for an extraordinary variety of uses. They could, for example, become the basis for creating a new heart or liver or kidney. An individual needing a transplant of one of these organs would no longer have to be placed on a list, waiting for someone to die in order to have a chance of survival.
Of course, the implications of this research are far-reaching: most important, does it mean that people could live forever? As soon as Dr. Gage’s work was made public, President Clinton referred the issue to the National Bioethics Advisory Commission and asked them to report to him by the end of the year. I believe that because human embryo cells have not yet become any part of a fetus, and because they are grown in a test tube and not taken from the uterus, this approach will be less controversial than the transplanting of fetal cell tissues into the spinal cord. If these human embryo cells (or possibly cells produced by cows) are injected into the site of the injury, they might become the axons and neurons necessary for the return of sensation and motor function.
In Long Beach, California, Dr. Jack Segal conducted an important study that demonstrated real progress in the application of the drug 4-AP. Only a year and a half earlier there had been real concerns about its use: any benefits were merely temporary, and there was a significant risk of seizure. But Dr. Segal gave 4-AP in pill form once every six hours to a group of nineteen patients, with astonishing results: 100 percent of them showed functional improvement. The paraplegics in the study experienced improved bladder, bowel, and sexual function. The most seriously injured participant, a young man with a lesion at the C2–C3 level, experienced a 45 percent improvement in pulmonary function, which meant he could spend much more time off his ventilator.
I was very encouraged by this study, even though I have had drastic side effects from certain drugs myself. My near-death experience from Sygen is still a vivid memory. But I believe I could take this 4-AP pill in relative safety—a nurse could be nearby with Benadryl in one hand in case I developed a high heart rate or dysreflexia; in her other hand, she could have Epinephrine to jump-start me if the new medication caused my heart rate and blood pressure to crash. It wouldn’t take long to see if it worked; six hours after taking the 4-AP I would do a routine breathing session off the ventilator and see if there had been any improvement.
In the weeks following the news of Dr. Segal’s study, I contacted several researchers to ask if there was any reason why I should not ask for a supply of the pills immediately. I found their responses fascinating. Several said that there was nothing to lose; after all, not one patient in the study had suffered any side effects, and every one had shown improvement. But many scientists, particularly those working in large, well-known laboratories, dismissed the study out of hand. They insisted that a single study, no matter how successful, is inadequate; before any conclusions can be reached the study must be repeated in a number of different laboratories. I think the scientific community had been caught by surprise. Perhaps there was even an element of jealousy involved—many prestigious centers had not yet tried 4-AP on humans, while a less known investigator had suddenly scored a major success with it.
Dr. Segal’s results confirmed my belief that important discoveries can come from anywhere. This is why I continually stress to my colleagues at the APA that we should continue giving seed money to post-docs and graduate students just entering the field, as well as to the eminent scientists we’ve supported for years.
Partly because the APA and the Christopher Reeve Foundation give financial support to scientists with ideas that are “out of the box”, spinal cord research has become a hot topic. The National Institute of Neurological Disorders and Stroke has a $51 million budget for research that includes studies of paralysis, but I believe that the studies it funds are often too conservative. But the APA has the freedom to fund the radical thinkers and investigators with unconventional ideas. We have supported research into transplanting olfactory glands from the nose into the spinal cord (where they would function as nerves); similar studies with nerves from fish brains; and experiments with the use of macrophages (part of the body’s immune system) to clear away debris after injury, thus creating a new environment around the lesion that would allow regeneration to occur. Many of these cutting-edge experiments would be unlikely to receive government funding.
The past year has also seen significant changes in scientists’ attitude toward spinal cord victims. In the past they had little to say about a patient’s post-injury way of life. Now they are strongly urging fitness in preparation for recovery. The most important issues arc preventing muscle atrophy and the loss of bone density, and maintaining adequate circulation. Fortunately, there is electric stimulation equipment for the legs, the abdomen, and the arms. And the Tilt Table does a remarkable job of keeping the leg bones and hips strong enough to walk when the time comes.
I still use the Tilt Table regularly, but in the summer of 1998 I added something new: walking therapy. Dr. Reggie Edgerton of UCLA initiated this technique to help stroke victims but then decided to see if it could also benefit paraplegics. It had never been used on a high-level quadriplegic, but Dr. Edgerton very kindly allowed me to try it.
The procedure is simple: The patient is placed in a parachute harness and then lifted by an overhead hoist onto an ordinary treadmill. When the treadmill moves, the patient walks, exercising the leg muscles and putting ligaments, tendons, and bones into motion, while experiencing a good cardiovascular workout as well. The theory is that the spinal cord has a memory; after all, I had been walking for forty-two years. In spite of the damage that had occurred, apparently connections remain to generate the mechanics of walking. Of course, this can work only if the leg muscles have not been allowed to atrophy.
As I prepared for my first session, I was told not to expect much movement
, if any at all. But as I was hoisted up into position and the treadmill was set in motion, my right leg moved back, then my hip transferred my weight to my left leg and it moved forward in a regular walking motion. I was elated, because this meant that all the exercising I had done both at Kessler and at home had paid off.
Now I have the privilege of “walking” at least once a week at the Burke Rehabilitation Center near my home in New York. In fact, I am the subject of a study comparing the differences between spinal cord patients who exercise regularly and those who don’t. I hope that the results, when presented to insurance companies, will help convince them that it is in their best interest to pay for proactive physical therapy for each patient.
The first step in an official scientific study is to establish the baseline of each subject so that any improvement or setback can be properly measured. In my case, the doctors decided to begin by establishing my bone density in order to see if the treadmill therapy could improve it. They started by examining ten individuals the same height, weight, age, and general physical condition as me. Every one of them scored 100 percent; the X rays of the first through fourth lumbar vertebrae and the outside edge of the hip bone showed no sign of osteoporosis or loss of density. When I was subjected to the same examination and X rays, the findings were so surprising that additional experts were called in to help confirm them: three and a half years after my injury, I had scored 120 percent—a partial tribute to genetics, but most importantly a vivid demonstration of the benefits of diet and exercise.
Still Me Page 27
