Still Me (19 page)

At 3:30 the next day I was in place and ready to begin, but several members of the team were late. I thought: Come on, we're going to have discipline here, we've all got to get together if we're going to make this happen. Finally I was really taking charge. When Dr. Finley arrived once again he asked me to take ten breaths. This time the average was 560 cc's per breath. A cheer broke out in the room.

And the next day we met again. All along Dr. Finley had been telling me when to breathe. He'd say, “Let it out. And breathe. And let it out, and breathe.” But now I suggested that I might do better if I just timed my own breaths when I felt the need for more air. So he took off the hose, and I started again. I was gasping, sucking for air, and my eyes were rolling up in my head. It was a maximum effort, psychologically and physically. But I breathed on my own for seven and a half minutes.

When I got up to the west wing near my room, Bill Carroll was beside himself. He said, “I've never seen progress like that. You're going to wean. You're going to get off this thing.” For the first time I thought it might be possible.

After that Erica and I worked alone. Every day we would breathe. I went from seven minutes to twelve to fifteen. Just before I left Kessler on the thirteenth of December, I gave it everything I had, and I breathed for thirty minutes. I remember Dr. Kirshblum saying, “I don't know how you're doing this, but then I don't know how you do a lot of what you do.” The previous summer, still adjusting to my new circumstances, I had given up. But by November I had the motivation to go forward.

Something else happened to me during those months, which was as therapeutic as any physical progress. When I first came to Kessler, I wanted no part of the disabled population. Gradually I had come to see that not only was I part of it but I might be able to do something important for all of us. I began to think that I could be useful to the scientists who were searching for a cure for paralysis. I had begun to understand something about the special character of celebrity. Although I had made several more “serious” movies, such as
The Remains of the Day
, it was clearly my portrayal of Superman that the public had taken to. I knew this role had a unique resonance and had won a great deal of affection for me, for which I had always been grateful. And it seemed that my injury, if anything, had created a new level of public support.

No one was specifically saying, “You could lead the charge on spinal cord disorders,” but hearing from certain people helped me formulate the idea. I was visited by Dr. Wise Young of New York University—Bellevue Medical Center, one of the great pioneers in spinal cord research, and by Arthur Ullian, an activist who had been paralyzed from the waist down in a bicycle accident. Arthur has been lobbying Congress for years, and they were the first to impress upon me the unique role that I could play. At about the same time I was contacted by Henry Steifel, chairman of the American Paralysis Association, asking if I might find a celebrity host for their annual fund-raising dinner that November. I was able to enlist Paul Newman, and with his participation the dinner was a tremendous success.

Juice had often told me, “You've been to the grave two times this year, brother. You're not going there again. You are here for a reason.” He thought my injury had meaning, had a purpose. I believed, and still do, that my injury was simply an accident. But maybe Juice and I are both right, because I have the opportunity now to make sense of this accident. I believe that it's what you do
after
a disaster that can give it meaning.

I began to face my new life. On Thanksgiving in 1995, I went home to Bedford to spend the day with my family. In the driveway, when I saw our home again, I wept. Dana held me. At the dinner table, when each of us in turn spoke a few words about what we were thankful for, Will said, “Dad.”

Chapter 5

My original discharge date from Kessler was during the second week of November, but Dr. Kirshblum had convinced my insurance company to let me stay another month in response to my initiative about breathing.

Getting permission to stay longer in rehab was a major victory in our ongoing battles about insurance. During most of my stay at Kessler, Dr. Kirshblum, Dana, and I had to spend a tremendous amount of time writing passionate letters, fighting for reimbursement for medical necessities. The first major struggle was over nursing hours: the company wanted to pay for only forty-five days of home care, with a nurse on duty from 7:00
A.M.
to 3:00
P.M.
Outside those hours they expected Dana to be responsible for my care. They also refused to pay for a backup ventilator. Their argument was that if the vent failed, I could be kept alive by a nurse or Dana using an ambu bag while another ventilator was brought over from the supplier's office in Hawthorne, half an hour away. But the person on call for such emergencies might live in another town, as far as an hour away. And of course if the vent failed while I was out of town on a speaking engagement (my major source of income), I would be left in an impossible situation because you can't talk while you are being “bagged.” The company even claimed that it was unnecessary for me to travel.

But what angered me most about the insurance company's position was their refusal to pay for any exercise equipment. Countless researchers have emphasized the importance of preparing the body for new treatments and therapies. If the muscles are allowed to atrophy, or if there is a significant loss of bone density because of inactivity, if the diaphragm is not exercised, then the patient will not be able to benefit from the progress scientists are making. In my case the company would not pay for any physical therapy work below the shoulders.

Because I believe so strongly that a cure for paralysis is possible, I equipped our home with essential exercise equipment, some bought and some donated. Electrologic of America provided me with a bicycle, which allows me to maintain the strength and mass of my leg muscles while giving me a cardiovascular workout. First I put on a pair of shorts with special electrodes that attach to the muscles of the thighs and buttocks. Then I'm lifted onto the bike and strapped in. Electrical stimulation causes contractions in the muscles that drive the pedals of the bike. At first I could only manage to keep the machine going for about five minutes, but within a few weeks I could cycle for half an hour without stopping. The benefit of this bike is tremendous, and it should be available to anyone with a spinal cord injury. Unfortunately, the retail cost is $100,000.

I also have a StimMaster (which cost $30,000) and special pants with electrodes attached that work all the leg muscles. Thanks to this machine, made by Bioflex (a small company in Ohio), the dimensions of my thighs and calves are almost the same as before the injury. We also use the StimMaster to work the abdominal muscles and the arms, two areas that can easily atrophy.

And at least twice a week I try to find time for the tilt table (retail cost $15,000), a device that allows me to stand with my legs and feet supporting my full body weight. First I'm transferred from the chair onto the board in a flat position and securely strapped in at the knees, waist, and upper chest. Then the nurse or aide gradually turns the handle that elevates one end of the table. We proceed slowly because if I go up too fast, my blood pressure will drop dramatically and I'll pass out. That happened several times as we learned how to use the table properly. (Now we have a rule that I have to keep my eyes open to reassure everyone I'm still conscious.) Usually it takes about fifteen minutes to reach the top, an incline of about 70 degrees, and I generally remain upright for about an hour. Suddenly I'm six feet four again. Dana and Will often come in to stand with me on the table for a family hug. Will likes to pretend that he's a mountain climber, and when he reaches the summit he perches on my head. I always let him know when I plan to use the tilt table because I think it's important for him to see me standing up, free from the confines of a wheelchair.

One of the reasons that insurance companies deny essential equipment and care is because only 30 percent of patients and their families fight back. While this allows the insurers to save enormous amounts of money, they would save even more by providing patients with the things they need: in most cases patients would improve dramatically or even be cured and no longer require costly reimbursements.

In addition to wanting to work on my breathing, I felt I needed the extra time at Kessler to prepare for the transition to life at home. My one-day visit home on Thanksgiving had been very stressful and depressing. Although I had tried to cover up my feelings as best I could, I spent much of the day parked by the fireplace. Ordinarily I would have been hosting the gathering, carving the turkey, organizing a pickup soccer game out in our front yard. We had not yet adapted the house to accommodate my wheelchair, so every time I wanted to move from one room to another, ramps had to be put in place and I would have to ask Chuck or Dana for help. My appetite was just starting to come back, and I struggled to be cheerful, not to ruin everyone else's day, as Dana fed me a tiny portion of turkey and mashed potatoes.

I was still feeling a lot of anger toward my insurance company. My trip to Bedford had been approved only on the condition that I return no later than 8:00
P.M.
The case manager maintained that if I could stay at home for a longer period, it meant that I didn't need to be in rehab anymore, and they would not pay for any additional time there. I would be forced to absorb the $1,300 per day cost myself or go home immediately.

So at 5:30 I was loaded into the van we had rented for the day and headed back to Kessler with Dana and a nurse and driver. Dana's parents stayed behind to look after Will and host the rest of the day. But the mood in the house had collapsed. We had tried our best, but everyone knew that this Thanksgiving was painfully different.

Over the next couple of weeks, Dana and I made arrangements with Tracy DeLuca, one of the owners of Care-More, a home care nursing agency. I would need twenty-four-hour-a-day nursing, plus a staff of aides to help lift me in and out of bed and do work around the house that I would ordinarily have done myself. I knew that some of them would be intimidated at first and that I would have to make an effort to put them at ease, regardless of how I was feeling on any given day.

I also had to come to terms with the fact that because of the danger of a pop-off or a sudden vent failure, I would never be able to be alone again, even in my own house. I had always cherished my independence, and while I often enjoyed other people's company, time alone was very important to me. One of my greatest pleasures was sailing long distances by myself aboard the
Sea Angel
. And I remembered fondly a solo trip across Canada in my Cherokee 140, landing in private fields and often sleeping under the wing. At our country house in the Berkshires, I enjoyed taking long walks and riding up in the hills. I always came back refreshed and ready to return phone calls or socialize.

I had many conversations with Dr. Kirshblum, who had become a good friend. I admitted to him that one of my fears about leaving the sanctuary of Kessler was that I would have to resume being a public figure. In addition to the attention I could expect from the media, soon I would have to respond to the challenge laid down by Wise Young and Arthur Ullian.

Steve Kirshblum very kindly advised me that I had no obligation to be the poster boy for spinal cord injury. I appreciated this, but I felt I needed to do something—not just for myself but for everyone else in the same condition. Even if I had wanted to (which I didn't), I would never be able to forget the other patients I had met at Kessler. I had seen too much of their struggles and pain. I couldn't go home, devote my life to myself and my family, and ignore the larger picture.

And I had spent a lot of time studying the research in depth. I knew what the possibilities were as well as the obstacles. I had met and spoken with the scientists who were working on nerve regeneration. I understood that there had recently been several exciting discoveries, but that without public interest and enthusiasm, without an influx of money, progress would be difficult if not impossible.

I had received many letters saying that with my spirit and determination, I could overcome my injury. I assumed that meant that I could conquer the emotional and psychological problems that lay ahead, because clearly spirit and determination cannot put nerves that have been torn apart back together again. The regeneration of nerves within the spinal cord, gene therapy, fetal cell transplants, and remyelination—all the fronts on which scientists are attacking the problem—require intensive research and experimentation. And money. If I had been around in the 1940s, I couldn't have assured someone with polio that with strength and determination he could overcome it. The cure for polio was the result of research and funding initiated by President Roosevelt. I knew that my ability to adjust to life in a wheelchair might depend on my spirit and determination, but my future would lie with medical science.

During most of my stay in Kessler, I was mainly concerned with my own health and learning to adapt to a new life. But after the visit from Wise Young and Arthur Ullian and the APA dinner in November, I began to read everything I could find about the science of my injury. I found it fascinating. Soon I wanted to learn as much as possible about the research in the field and to understand my own condition in much more detail. I even persuaded Dr. Kirshblum to let me have another MRI so that I could see what my spinal cord looked like six months after the injury. We spent hours studying the photos. They showed that the hemorrhage on the left side at the C2 level had turned to scar tissue, that the spinal cord had shrunk considerably, but that there was no evidence of new damage.