Still Me (21 page)

But to me the best news is that new researchers are entering the field. Dr. Dan Jay, a professor of molecular biology at Harvard, wrote me in April 1997 to say that he had changed his career to focus exclusively on spinal cord research. Today he is working with several of the leading experts around the world and is about to publish an article about a significant breakthrough in remyelination.

It is the third approach, the regeneration of nerves, that excites researchers and patients the most. Nerve growth factor is now being used in the spinal cord to encourage the growth of new axons, which conduct electrical impulses from the brain. Spinal-cord-injured rats given intravenous NGF have regained connections between the spinal cord and the brain. And there are other potentially useful substances, such as fibroblast growth factor (FGF), which aids in the healing of wounds, and gangliosides, which may also protect and promote the growth of axons.

In 1995 Barbara Walters interviewed Wise Young as part of a profile on me. She asked him point blank if I would ever walk again. Wise replied that at first there is hope, but over time hope ebbs. Two years later, when he was interviewed for
48 Hours
, he said that with adequate funding it might be possible for me to walk within five to seven years. In a front-page article about spinal cord research in the
Chicago Tribune
, he stated, “It might be easier than we had thought.” In his laboratory at NYU he had been working with an antibody called L-1. At a fund-raising dinner in Puerto Rico in May 1997, I showed footage of rats that had been treated with this drug in Wise's laboratory after a complete transection of the spinal cord. One month later their hind legs had regained function. In fact, one rat was trying to climb out of the basin he was kept in. When the lights came up I turned to the audience and said, “Oh, to be a rat.”

By the end of the year, Wise had moved to Rutgers and made even more progress with L-l. Rating movement on a scale of 0 to 14, with 0 representing no ability to move and 14 full recovery of motor function, many of the rats achieved a score of 12.5. An untrained observer would not be able to detect any abnormality. He repeated the experiment twice to make sure of his data before publishing his findings in March 1998.

With my involvement in research and fund-raising, my life became busier than it had been before the accident. I had to balance my roles as husband, father, a professional who still wanted to work in films and theater, and an activist. I established the Christopher Reeve Foundation as another way of raising money for the APA and helping with quality-of-life issues for the disabled. I made speeches all over the country, hosted fund-raisers, and lobbied in Washington. I was gratified by the last line in a
Newsweek
article that chronicled the new direction my life was taking. After listing my plans and activities, the writer concluded, “We should all be so disabled.”

As I began to study the problem of how to raise more money for research, I realized we would have to tap the resources of the government as well as private donors. I learned that the budget for the National Institutes of Health is only a little more than $13 billion, which has to cover research into virtually every affliction affecting the American public, from Alzheimer's and Parkinson's to cancer in all its forms, as well as many others. I met a number of times with the director of the NIH, Dr. Harold Varmus, and learned of his ongoing battle with Congress for more funding. He explained that the government spends $90 billion per year in Medicaid and Medicare payments to Alzheimer's patients without doing anything to cure them. $8.7 billion is spent annually merely to maintain spinal cord patients, often in VA hospitals or nursing homes.

The economics of the situation make little sense. It seems to me that the government is fulfilling a social obligation to people suffering from serious afflictions but adding significantly to the national debt while failing to improve the quality of their lives. Many families who care for a chronically ill or injured family member quickly reach the million-dollar limit on their health insurance. Then they must turn to Medicare and are usually forced to sell their homes and most of their possessions in order to qualify for it. The sad truth is that once patients are accepted into the Medicare program, they are generally relegated to nursing homes, where there is little or no therapy, and they live out their days in a kind of human parking garage. I heard of one twelve-year-old boy who suffered a spinal cord injury and was placed in a mental institution because there was no room for him at any other facility. Some patients are allowed to live at home, but with minimal care.

The fact that this occurs at a time when real progress is being made toward alleviating and curing these conditions is terrible. I once heard a scientist exclaim, “Give us $100 million and we can cure Parkinson's.” If the budget of the NIH were doubled—raised from $13 to $26 billion—the pace of research would be greatly accelerated and therapies would come more quickly. By some estimates the government would soon save as much as $300 billion annually. Unfortunately, the 105th Congress was determined to balance the budget by the year 2002, even if that required drastic cuts in a variety of worthwhile programs. The mood on the hill, the mantra for many politicians, was “no more spending,” and it is hard for many of them to take the long view. Few could be convinced that current biomedical research is not speculative. On the contrary, it is the humanitarian and economic solution to the nation's health care issues.

Research has traditionally been considered a luxury; you throw money at scientists, who may or may not come up with something useful. Many politicians want to know exactly what their money is buying. If you order a nuclear submarine, you know what you will get. Research seems too abstract. But today this is not the case: research is quite specific, and the progress is concrete and quantifiable. In the near future there will be a vaccine for diabetes. New drugs can arrest the nerve degeneration in MS. An AIDS vaccine may soon be possible because of the money spent on research. In 1984 the NIH spent zero dollars on AIDS. In 1996 they spent approximately $1.3 billion because it had become a national issue—not a disease that affects only a small segment of the population but one that takes the lives of the sons and daughters of middle America.

I became so involved in talking to scientists and plotting strategies to increase funding for research that I began to neglect my own rehabilitation. There were no longer physical therapists supervising my progress. I had to rely on self-discipline to stay healthy and keep my body from degenerating. Breathing on my own became a particularly sensitive issue. By January 1997 I was able to breathe off the vent for up to ninety minutes. I longed for independence from that machine on the back of my chair. I went to Kessler for a consultation with Dr. Kirshblum. The crucial question was whether or not my diaphragm was moving. I was injected with a special dye, and films were taken as I breathed on my own. These showed that, in fact, my diaphragm moves both voluntarily and involuntarily. In consultation with the leading expert in weaning patients off ventilators, Dr. Peter Peterson at the Craig Rehabilitation Center in Denver, we discussed what it would take for me to get off the vent completely.

The prognosis was not encouraging. Dr. Peterson said that I would have to spend ten to twelve months at their facility and have minimal contact with the outside world. He even recommended that I have no access to a telephone. I would have to get up in the morning and breathe until lunch, then breathe again all afternoon, and only be put back on the ventilator at night. He predicted my chance of success was about 30 percent; the difficulty would be in sufficiently ventilating my six-foot-four, 215-pound body. Some spinal cord patients with a C2 injury have successfully weaned off the ventilator, but all of them were much smaller than I am, and therefore had a much easier task.

On the one hand, breathing on my own would have been a huge breakthrough. Part of me longed to try it, in spite of the odds against success. On the other hand, it would have been extremely painful to be away from Will and Dana and not to see Matthew and Alexandra for that long; and I knew that if I spent a year in isolation trying to breathe, I wouldn't be able to carry on with the fund-raising efforts for research. Momentum was building and I was concerned about what might happen if I suddenly disappeared for an extended period of time.

Shortly after returning to Bedford, I was contacted by Joan Irvine Smith, a horsewoman and a great philanthropist. She was touched by the fact that I hadn't blamed my horse for the accident. She told me she was moved by my situation and wouldn't rest until I walked. She has incredible energy, and is very influential politically, both in California and across the country. Anyone running for office wants to have Joan Irvine Smith on his side.

She decided to create a chair in my name at UC Irvine, dedicated to finding a cure for chronic spinal cord injuries. She put up a million dollars of her own money, which was matched by the state. Additional funds have been coming in from the private sector; the goal is $5 million. She has also created an incentive: a $50,000 prize given annually to the scientist who has done the most to further spinal cord research in the preceding year. In the fall of '96 I presented the first award to Martin Schwab.

Even before my injury I had always thought of scientists as gifted individuals of superior intelligence but wondered why they seemed to work so slowly. I respected their need to proceed cautiously, to perform thorough investigations, and to verify their data; but I often teased my half sister Alya about the endless number of conferences and symposiums that scientists attend. When I became a vent-dependent quadriplegic, my desire to resume a normal life made me more aggressive in my dealings with the scientific community. In many of my speeches around the country, I found myself referring to the
Apollo 13
mission and the now famous line, “Failure is not an option.”

On behalf of people around the world who suffer from serious illnesses or disabilities, I often long to make the scientists understand that, figuratively speaking,
we
are in the same predicament. There is an emergency. If we fail to support cutting-edge research immediately, it will be the equivalent of saying that nothing can be done to save the lives of three astronauts about to die of CO
₂
poisoning. If we insist on sticking to the standard, cautious checklist in our approach to research, if we let the bureaucracy of the FDA or the NIH prevent new therapies from reaching the public, we will have needlessly perpetuated the suffering of millions of members of the American family.

Fortunately, from the spring of 1996 on, more money has been raised and more research accomplished. In November 1996 nearly 25,000 neuroscientists met to share information and ideas at the Convention Center in Washington and in sessions in nearby hotels. It was the largest such gathering in history. In March 1997 a meeting was held of the APA's research consortium—a collaboration of neuroscientists in Europe and the United States. Dennis Choi reported on his work on cell death, Fred Gage on the growth factor NT-3, the Bunge laboratory on Schwann cell transplants, Wise Young on his progress with 4-AP and L-1, Martin Schwab on his efforts to humanize the antibody to the protein inhibitors; Lars Olson on his bridging technique. Gene therapy was discussed—the efforts to stimulate the growth of damaged axons by changing the function of an injured animal's cells to produce a growth factor at the site of the injury. It was all immensely exciting.

When I met with Martin Schwab at UC Irvine in September 1996 to give him the research award, he showed me what he'd been doing—work that hadn't even been published yet. He'd been able to take a rat who had been injured for two months and get nerve fibers to regenerate 2 centimeters. That's a long distance. With my injury at C2, you would only need to regenerate 20 millimeters to obtain functional recovery—first breathing, then arm movements, control of my hands, and so on down the line. If the regenerated nerves grew to the lumbar area, I would get up and walk. The last thing Dr. Schwab said to me as I was leaving is that by the end of 1998 we ought to be able to do things at the clinical level that had been thought impossible only a few years ago.

But when I left Kessler in December 1995, much of this work had not been accomplished. Wise Young's words to Barbara Walters—that over time hope ebbs—still haunted me. I was absolutely unwilling to give in to that way of thinking. I remember talking with Dr. Kirshblum late one night and saying that I didn't want to join the ranks of spinal cord victims who had given up. While I could certainly understand that someone who has been in a chair for thirty years would have a hard time believing in a brighter future, I had only been injured for seven months. For my own emotional well-being I had to banish negativity from my mind. Lindbergh made it across the Atlantic; Houdini got out of those straitjackets; with enough money and grass-roots support, why shouldn't I be able to get out of this wheelchair? When you're trapped in a dark room, you think: Where's the exit? You find the exit by remaining calm and slowly feeling your way in the dark until you reach the door.

By the beginning of 1998 it seemed more certain than ever that victims of brain and central nervous system disorders would be able to escape from that dark room. The first fetal cell transplants into a human spinal cord were accomplished by researchers in Gainesville, Florida. Martin Schwab, having succeeded in developing the antibody to the protein inhibitors in rats, moved into primates with similar success. After studying my latest MRI, taken at UC Irvine in September 1997, he wrote to say that I would be a prime candidate for the first human trials, which were scheduled to begin within a year. Articles about spinal cord research began to appear on the front pages of the leading newspapers around the country.