Still Me (39 page)

By this time I've been worked on for nearly an hour and a half, and I'm finally ready to be dressed. Because my clothes have to be put on while I'm still in bed, I particularly hate days that end with a black tie gala. These events are definitely worthwhile, but I have to admit I wish there weren't quite so many of them. The aides are only available for the morning and nighttime care, so on formal occasions I have to dress for the evening at nine in the morning. Sometimes I rebel and wear more comfortable clothes. When I arrive at the venue I apologize profusely for having misunderstood the dress code.

Even on days when I can stay at home, getting dressed takes time and, more important, the ability to accept not being able to do any of it by myself. When two people have to roll you back and forth in order to put on your underpants at age forty-five, it's a difficult lesson in patience and acceptance. I pick out my wardrobe, but I have no choice about one part of it: to promote better circulation in my legs, I always have to wear the hated T.E.D. hose. Finally I'm ready to be lifted into the chair. The entire ordeal of getting up can take as much as three hours.

And there are times I have to stay in bed longer than required by the regular routine. Every three weeks the trach has to be changed, which involves pulling the old one out, cleaning the site thoroughly, and putting a new one in. Tracy does this better than any of the doctors who used to perform the procedure. I will never forget the first trach change, attempted by two pulmonologists a week after I came home. I was given a mild anesthetic; the doctors pulled the trach out, cleared away some granulation (healing) tissue in my throat, then couldn't get the new trach to go in. By this time I had been off the hose for nearly two minutes; my lips were turning blue, and my eyes were bulging. I couldn't breathe because the air I took in through my mouth escaped through the open hole in my throat instead of getting to my lungs. One of the doctors ran to the phone to call an ear, nose, and throat specialist; the other one kept asking, “Are you all right?” Tracy stepped in and with one hand shoved the new trach down my throat and into place. As she reconnected the hose from the ventilator and I started breathing again, one of the doctors berated her for interfering with their work and for touching the trach without a glove. Matthew and Al, who had just arrived for the Christmas holidays, watched in horror from the kitchen; they had never seen an emergency before. The two pulmonologists packed and left in silence, taking their egos with them.

That was not the first time Tracy had taken matters into her own hands and proven her skill. Within days of my arrival back in Bedford, Dr. Kirshblum asked her to remove the picc line from my chest. This requires a special certification, which of course Tracy had. It had been a traumatic experience when it was put in at UVA, but I understood that it was needed for the quick delivery of drugs or blood into my body. They insert the line into a vein in the arm, then snake it up over the shoulder and down into a major artery right next to the heart. The fact that the procedure was performed by a specialist was not enough to reassure me.

Now as Tracy prepared to remove the picc line, I started to lecture her about the danger involved. I told her that the end of the line was in a critical artery, and that if she wasn't extremely careful she could cause serious internal bleeding. I suggested that on second thought it might be better to go to the hospital to have it taken out. Just as I was finishing these rather condescending remarks, Tracy held up the picc line. It had taken her about a minute to remove it, and I hadn't even noticed.

When I'm not on a tight schedule, I always do some kind of exercise as part of the morning ritual. We keep a chart of each day's activities so that every muscle group is worked equally. Apart from the physical benefits, I have found that exercising the body helps me focus on the future. No matter what kind of mood I'm in, I always make myself do something that will help prevent my physical condition from deteriorating. It's just like the first few months of 1977, when I was training for
Superman
and told my driver to take me to the gym even if I said I wanted to go home. Once I was there, there was nothing to do but change into my workout clothes and start lifting weights.

Now, facing muscle atrophy, loss of bone density, osteoporosis, and all the other side effects of a spinal cord injury, I use the same technique—only I'm the driver. There's no one standing over me cracking a whip, nothing to prevent me from lying in bed until late in the morning. I have to rely on self-discipline and faith, although my faith is based on science rather than religion. The very real possibility that an injured spinal cord can be repaired is a testimony to the dedication, perseverance, compassion, and skill of a few great minds. The least I can do is try to match their dedication as they achieve the seemingly impossible in the laboratory. I have faith that they will succeed, in spite of the fact that there is no certainty.

The morning routine of dressing and exercise is usually finished by eleven o'clock. I eat a light breakfast of cereal or a piece of toast with tea, and occasionally an omelet to keep my protein levels up. Sometimes I wish that I still couldn't stand food, because it's extremely difficult to stay thin. I often joke with Dana and the nurses about the weight I put on in the spring of '97. I remind them that in the pictures of me receiving my star on the Hollywood Walk of Fame I look like Marlon Brando—and not the Marlon Brando from
Streetcar
or
On the Waterfront
.

I consider myself extremely fortunate because my schedule is so varied. Many patients have no choice but to become stuck in a routine, which of course makes it hard for them to be optimistic about the future. But I'm able to travel, to visit scientists in their laboratories and hear about progress in research months before the results are published in scientific journals. Thanks to the generosity of groups that hire me for speaking engagements, I've appeared all over the country, sharing my experiences and creating more awareness about the disabled. Often I speak at rehab centers and talk about what I've learned with other spinal cord patients. I had the opportunity to direct a film, which gave me great creative satisfaction and kept me from thinking so much about myself.

I spend much of my time planning events to raise money for the Christopher Reeve Foundation. In our first year of operation we raised more than $750,000; 70 percent of it went to the APA and the rest to groups dedicated to quality of life issues of the disabled. I was also involved in the creation of a paid commercial called
Circle of Friends
to benefit the APA. I approved the script and called friends like Paul Newman, Mel Gibson, and Meryl Streep as well as a number of scientists to ask for their participation.

Much of my time is spent on the phone and corresponding with members of Congress about funding for research. As of this writing the effort is continuing to double the budget of the NIH, in spite of the first vote against it. The Harkin-Specter bill that would require insurance companies to donate one penny per premium for research is still alive, and I've been meeting with executives of several companies to enlist their support. Often I refer to my great-grandfather Franklin d'Olier, who was the CEO of the Prudential Insurance Company in the 1920s. I truly believe that he not only would have backed the legislation but would have pressured his colleagues at other companies to do the same. I'm still working with Senator Jeffords on the bill that would increase insurance caps to $10 million, as well as on the legislation that would fund biomedical research by means of a tax on cigarettes. I correspond regularly with President Clinton, urging him to follow the example of FDR's initiative with polio and call for sufficient funding for an all-out war against Alzheimer's, MS, stroke, Parkinson's, and spinal cord injuries. Because cures for these conditions are so imminent, his leadership on this issue could be an important part of his legacy.

The minute there is a lull in the action, my assistants Michael, Sarah, and Rachel come up from the offices downstairs armed with faxes, letters, messages, and the appointment book. There is always enough work to keep me busy all day, but I generally attend first to the items we consider “crashing and burning.” Business that involves the American Paralysis Association, the Christopher Reeve Foundation, or political activity in Washington gets top priority. We also try to answer as many requests as possible from the spinal cord community. Often when I can't attend an event, I record a video message to be played at the dinner or symposium. On those days our house is overrun with equipment and crew. (We're running out of ways to rearrange our living room so it doesn't look exactly the same in every video.) Sometimes when my obligations on a particular day seem overwhelming, I take time to go outside, lean back in my chair, and enjoy the view of the Gonzaleses' farm below our house. The goats and sheep graze contentedly in the pasture near the pond, while the chickens and guinea hens scurry around in the safety of the front yard.

Actually, they are not always so safe. In the fall of '97, Jay Wiseman, a family friend, came to stay with us as a part-time baby-sitter for Will and aide to me. Along with him came the world's friendliest dog, Oliver, part Belgian shepherd and part St. Bernard, who became a great pal to Will. Even though he was only nine months old, he was the perfect houseguest. When he needed to go to the bathroom, he went up into the woods rather than make a mess on our carefully manicured lawn. He was so well behaved that we let him have free run of the house and our property.

Usually he stayed nearby. But one day as I was working in my office, I looked out the window and saw him trotting up the hill with one of the Gonzaleses' chickens in his mouth. Jay made Oliver drop the mangled fowl and tied him to a tree while Dana and I agonized about how to break the news to our neighbors. She called them that evening, apologizing profusely and promising it would never happen again. Lynn, their teenage daughter, who answered the phone, wasn't nearly as upset as we thought she'd be. (This was a surprise to me, because I thought the chickens were beloved family pets.) She simply said that if Oliver were to attack again, all would be forgiven as long as she was invited up to meet Robin Williams the next time he came to the house.

I try to finish the workday by 5:30 so I can spend time with Will, and with Dana if she's back from her appointments in the city. We eat dinner at about six-thirty or seven o'clock at the latest; usually fish or red meat with spinach, broccoli, or salad, which I need to keep my hemoglobin and albumin levels up. This is necessary to promote healing of any skin breakdowns and to maintain my overall health. After dinner Will and I race around the driveway if it's not too cold. My wheelchair is no match for his bike, even if he gives me a head start. But I love the fact that he enjoys beating his dad, just like any other kid. Aside from opening doors for me and sometimes moving furniture out of my way, he doesn't cater to my disability, which I deeply appreciate. In the winter we watch the New York Rangers on TV, and we always go to several games a season at Madison Square Garden. I started teaching Will to play hockey when he was two years old, before he had ever put on a pair of skates. Now he is obsessed with the game and can tell you the names of the star players on every team in the NHL. When Dana comes into the kitchen first thing in the morning, she usually finds Will already at the table reading the sports section of
The New York Times.
Then he comes into the bedroom and reports to me on the latest stats of his favorite teams, as well as the scores and highlights of last night's games. When he plays floor hockey in the family room, I often come through in my wheelchair and we pretend that it's the Zamboni; I drive back and forth resurfacing the ice.

When we're at home I generally go to bed at 9:30, which is very much against my nature. When I was on my feet, I never went upstairs until 11:30 or midnight. But now I have to go in early because the process of putting me to bed takes nearly two hours. A nurse and an aide share the workload. First they take the legs and the left arm off the wheelchair. Then the aide gets a firm grip on the canvas lifting pad that remains underneath me at all times and positions himself to carry my upper body. The nurse gets a grip under my knees. On a count of three they lift together and set me down gently (most of the time) on my bed. Coordination between them is crucial, and if the lifting pad slips I could easily be dropped on the floor in the space between the chair and the bed. Having been dropped once during the transfer from the bike to my chair, I am always slightly anxious. But I think that accident served as a warning to everybody who works with me. Now the lifts are almost always perfect.

Next comes the process of undressing me, which I have finally come to accept; I used to have to control my anger with myself for having ended up in this situation. Often I listen to music or watch TV so I don't have to think about being taken care of like a baby. Once my clothes are off I'm given another sponge bath, and every other day the nurses wash my hair. This involves leaning my head back into a small plastic tub filled with water at the head of the bed. After I'm shampooed and conditioned the water is drained into a bucket and dumped into the sink. About once a week I'm transferred onto a special plastic chair and treated to a proper shower. Unfortunately that takes a lot of time, and the transfer from the bed to the shower chair is fairly dangerous; since the chair's arm can't be removed, I have to be lifted over it. While all the aides are good, I naturally feel more secure with some than with others.

After I'm clean I choose a T-shirt to sleep in, and I decide on the number of blankets, depending on my temperature. Because the connection between my brain and the nerves in my spinal cord has been disrupted, my body frequently responds inappropriately. People around me might be dropping from the heat while I'm asking for a space heater and more blankets. Almost every night I wake up at four in the morning feeling that I've been placed in a broiler. Dana, sleeping next to me, seems perfectly comfortable under a pile of covers.