Still Me (41 page)

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 faint 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.

By the end of 1998, I was in the best physical condition since the accident: no infections, no pressure sores, no muscle atrophy, and completely clear lungs. I plan to do whatever it takes to stay this way and to strive for improvement. I feel that this is my half of what is needed to get out of the wheelchair. The other half, of course, is continuing progress in research. When I was first injured, the scientists had not yet found the solution for curing paralysis. Ideas were floating everywhere, but there was no definitive approach. Today regeneration seems to have been accepted by scientists all over the world as the most likely path to functional recovery. Now the focus is on patents, funding by pharmaceutical companies, the scheduling of human trials, and techniques of administering antibodies into the spinal cord. Much of this is tedious work that involves a huge paper shuffle among scientists, lawyers, and corporate executives. I realize this is all part of the process, even though it is extremely frustrating. But it means that there is truly light at the end of the tunnel. In the October 1998 edition of the magazine
Brain Work
, which reports the latest findings in neuroscience, I was extremely gratified to find the following statement, because it supports my often criticized optimism about the future: “In spinal cord injury, fatalism is finished, replaced by confidence that scientists will find ways to help spinal cord victims recover.”

In the first six months of 1998, I became involved in two important pieces of legislation—one at the state level, and the other in Congress. First I lent my support to a bill that had originally been proposed in Albany more than twenty-three years ago. Paul Richter, a state trooper who had been injured in a high-speed chase, had secured bipartisan support for a groundbreaking measure: a portion of a surcharge imposed on all traffic violations would be used to help fund spinal cord research in New York State. A thirteen-member board of advisors would be appointed to administer the newly created research fund. Some of the key centers that would benefit were the Albany Medical Center, SUNY Stony Brook, and Mt. Sinai Hospital.