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 i
f 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.
Once I’m settled in bed the aide ranges me again, taking extra time to stretch and flex all the muscles. After twelve to fourteen hours of immobility in the chair, this is a great relief and one of the highlights of my day. Unfortunately this is immediately followed by one of the low points: the bowel program. I often joke that it’s one of my favorite shows, right after NYPD Blue and Law and Order.
I’m turned on my side, and the aide pushes on my stomach with his fist in order to force stool down through the intestines and out onto plastic sheets placed underneath me. Part of the rehab process is training the bowels to release stool on a schedule. It takes nearly a month for this conditioning, and there are many accidents along the way, until the body learns to produce results at a specific time. Again, this is a time when I let my mind drift far away. The nurses and aides are always extremely professional, but all of us recognize what a personal invasion this is, and what an indignity. Sometimes it can take nearly an hour to complete the bowel program, and it seems like an eternity. When I’m unable to detach myself mentally, I still can’t help agonizing over the accident and the twist of fate that caused me to end up this way.
When the whole regimen is over, Dana joins me in the narrow bed, and we spend intimate time together until we say good night and she has to move to her own bed beside me, because there isn’t room for both of us in mine. By now it’s nearly midnight. I take my “sleepers”—a Benadryl tablet and a 10-milligram tablet of Ambien, a mild sedative. I hate having to take any kind of drug at bedtime, but without them my body would spasm during the night. Within a half hour I’m dreaming, whole again and off on some adventure.
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People often ask me what it’s like to have sustained a spinal cord injury and be confined to a wheelchair. Apart from all the medical complications, I would say the worst part of it is leaving the physical world—having had to make the transition from participant to observer long before I would have expected. I think most of us are prepared to give up cherished physical activities gradually as we age. I certainly wouldn’t be competing in combined training events in my sixties or skiing nearly as fast as I used to. If I went sailing in my later years I wouldn’t go single-handed. Stronger arms and more agile bodies would be needed to raise and trim the sails or steer in a heavy sea.
The difference is that I would have had time to prepare for other ways of enjoying the things I love to do most. But to have it all change and have most of it taken away at age forty-two is devastating. As much as I remind myself that being is more important than doing, that the quality of relationships is the key to happiness, I’m actually putting on a brave face. I do believe those things are true, but I miss freedom, spontaneity, action, and adventure more than I can say. Sometimes when we’re up in Williamstown I sit out on the deck looking across our pastures to Mount Greylock, and I remember how I used to be a part of it. We hiked up the mountain, swam in the streams, rode our horses across the open fields, chopped our own Christmas tree from the woods above the house. Now it’s just scenery—still beautiful, but almost as if cordoned off behind velvet ropes. I feel like a visitor at a spectacular outdoor museum.
When I first moved to the Williamstown house in the summer of ’87, the trailer for my sailplane was parked beside the barn. As soaring gave way to riding, a horse trailer took its place. Over the next few years the three stalls were home in turn to Valentine, Abby, Hope, Dandy, Denver, and Buck. I taught Al to ride, and we spent many happy hours cleaning tack together, bringing the horses in from their turnout, getting up at six for the morning feed. Bill Stinson kept all his gardening equipment in the other half of the barn, so he was always coming and going. Many times Matthew and Al would play with their friends in the hayloft above, making forts out of bales of hay and attacking each other with tennis balls. The barn was always cool and inviting on humid August days.
Now the stalls are empty. The barn is all closed up, and my van, full of ramps, oxygen tanks, and emergency supplies, is parked where the horse trailer used to be. We all remember how it was, but we don’t talk about it much. The barn, too, has become scenery. Al continued to ride for about a year after my accident, and I coached her once at a local show, but now she’s given it up. As I write this she’s just turned fourteen. Her schoolwork takes much more of her time, she enjoys spending weekends with her friends, and the phone is ringing more and more as boys her age are beginning to work up the courage to ask her out. There may be other reasons why she’s stopped, but I don’t ask. Dana doesn’t ride anymore either because it was something we did together.
When the first Superman movie came out, I gave dozens of interviews to promote it. The most frequently asked question was: “What is a hero?” I remember how easily I’d talk about it, the glib response I repeated
so many times. My answer was that a hero is someone who commits a courageous action without considering the consequences. A soldier who crawls out of a foxhole to drag an injured buddy back to safety, the prisoners of war who never stop trying to escape even though they know they may be executed if they’re caught. And I also meant individuals who are slightly larger than life: Houdini and Lindbergh of course, John Wayne and JFK, and even sports figures who have taken on mythical proportions, such as Babe Ruth or Joe DiMaggio.
Now my definition is completely different. I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. The fifteen-year-old boy down the hall at Kessler who had landed on his head while wrestling with his brother, leaving him paralyzed and barely able to swallow or speak. Travis Roy, paralyzed in the first eleven seconds of a hockey game in his freshman year at college. Henry Steifel, paralyzed from the chest down in a car accident at seventeen, completing his education and working on Wall Street at age thirty-two, but having missed so much of what life has to offer. These are real heroes, and so are the families and friends who have stood by them.
At UVA and at Kessler, I always kept the picture of the Pyramid of Quetzalcoatl in front of me. I would look at the hundreds of steps leading up to the clouds and imagine myself climbing slowly but surely to the top. That desire sustained me in the early days after my injury, but during the next couple of years I had to learn to face the reality: you manage to climb one or two steps, but then something happens and you fall back three. The worst of it is the unpredictability. Several times I’ve made a commitment to appear at a function or give a speech, but the night before, or even that morning, a skin tear, or dysreflexia, or a lung infection suddenly developed and I had to go to the hospital instead.
Still Me Page 26