Still Me (40 page)

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.

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.

Climbing up the steps, I've appeared at the Oscars, spoken at the Democratic Convention, directed a film, written this book, worked on political issues, and traveled more extensively than most high-level quadriplegics. But, falling backwards, I've been hospitalized eleven times for dysreflexia, pneumonia, a collapsed lung, a broken arm, two blood clots, a possible hip fracture, and the infection in my left ankle that nearly resulted in the partial amputation of my leg.

I was told by so many “experts”—doctors, psychologists, physical therapists, other patients, and well-meaning friends and family members—that as time went by not only would I become more stable physically but I would become well adjusted psychologically to my condition. I have found exactly the opposite to be true. The longer you sit in a wheelchair, the more the body breaks down and the harder you have to fight against it. Psychologically, I feel I have established a workable baseline: I have my down days, but I haven't been incapacitated by them. This doesn't mean, though, that I accept paralysis, or that I'm at peace with it.

The sensory deprivation hurts the most: I haven't been able to give Will a hug since he was two years old, and now he's five and a half. This is the reason Dana and I decided not to have another child; it would be too painful not to be able to hold and embrace this little creature the way I did with the others. The physical world is still very meaningful to me; I have not been able to detach myself from it and live entirely in my mind. While I believe it's true that we are not our bodies, that our bodies are like houses we live in while we're here on earth, that concept is more of an intellectual construct than a philosophy I can live by on a daily basis. I'm jealous when someone talks about a recent skiing vacation, when friends embrace each other, or even when Will plays hockey in the driveway with someone else.

If someone were to ask me what is the most difficult lesson I've learned from all this, I'm very clear about it: I know I have to give when sometimes I really want to take. I've realized instinctively that it's part of my job as a father now not to cause Will to worry about me. If I were to give in to self-pity or express my anger in front of him, it would place an unfair burden on this carefree five-year-old. If I were to turn inward and spend my time mourning the past, I couldn't be as close to Matthew and Alexandra, two teenagers who naturally need to turn to me for advice. And what kind of life would it be for Dana if I let myself go and became just a depressed hulk in a wheelchair? All of this takes effort on my part, because it's still very difficult to accept the turn my life has taken, simply because of one unlucky moment.

When I was in California in September 1997 for the dedication of the building that will house the Reeve-Irvine Research Center, I had another MRI. There was concern that a cyst could have developed on my spinal cord, or that there might be a cavity—sometimes the cord splits open long after the initial injury, causing further damage to the nerves. Fortunately, the pictures were clean, meaning that even after two and a half years there had been no more deterioration. This was excellent news and caused a lot of excitement among the doctors who studied the film, but I came away sobered by the comments of the chief radiologist. He showed me that the damage to my spinal cord was only one centimeter wide, and said that if I had landed with my head twisted only a fraction further to the left, I would have been killed instantly. If I had landed with my head slightly more to the right, I probably would have sustained a bruise and been up on my feet within a few weeks. I just happened to hit the rail at an angle that turned me into a C2 vent-dependent quadriplegic. The irony of it hit me very hard, although I kept my emotions to myself. I knew there was no point in dwelling on it. But now I knew on a visceral level how fragile our existence is.

Matthew and Al in the summer of '96. I'm more proud of them than I can say.

And now I'm sailing again. But this time we're on the
Sea Angel
headed for Maine. It's nighttime and I'm at the helm. Down below Dana and the children are sleeping. The breeze is warm and gentle, and we're sailing down the path of a full moon. For a moment I look behind me, fascinated by the boiling water just astern. Then I look a little further back and see that there are bits of foam, but the water has begun to calm down. When I look even further behind us, our wake has disappeared, and there is nothing to show that we were ever there.

I think this image comes to me out of fear that the best moments of my life are behind me. I look back longingly, hoping that the memories won't disappear. To me they're very vivid, but I cling to them more than I ever would have before my life changed so drastically. At forty-two, still in my prime, I took it for granted that I could look forward to many peak experiences in every aspect of my life. I rarely if ever looked back, because the present was so rich and full of promise. But now, in spite of the pain it causes me, I can't help dwelling on the fact that so many wonderful moments are receding in the distance.

April 11, 1995. Dana and I celebrated our third anniversary by treating ourselves to a huge suite at the Mark Hotel in New York. After an evening out to dinner and the theater, we came back to the room and made love until morning. It was just as exciting as the moment I asked her to marry me and we forgot about dinner and went straight to the bedroom. There will never be another night like it.

It's six years since we filmed
Remains of the Day;
fifteen years since that wonderful summer working on
The Bostonians;
eighteen years since
Fifth of July
. The last time I performed onstage was in
The Guardsman
, at Williamstown in 1992. How can it have been so long? Time collapses in my mind, and suddenly it seems that just the other day Tim Murray and my brother, Ben, and I were taking the
Sea Angel
down to the Chesapeake for the winter. I remember every detail of the trip. But Tim's gone, and my brother and I never speak about it.

Recently I went by our old apartment on Seventy-eighth Street and stopped for a moment to remember, to absorb the atmosphere around a place that was home for more than ten years. I looked up and saw that the cherry trees we had planted on our roof garden were still there, now part of somebody else's life. A block away the asphalt playground of P.S. 77 looked exactly the same. When he was only four years old, Matthew and I used to play racquetball there against the wall. I remember how stiff my back used to get from bending over to hold the seat of his bike as he learned to ride without training wheels on the sidewalks around the Museum of Natural History. Twenty-two years ago I threw caution to the wind and invited all my parents—Franklin and Helen, Barbara and Tris—to the opening night of
A Matter of Gravity
and arranged for them to sit together. Twenty years ago I sat in the middle of a black tie audience at the Kennedy Center and watched Superman fly across the screen for the first time. Less than four years ago Buck was stabled at Sunnyfield Farm just down the road, and we worked together with Lendon and enjoyed being part of a group of dedicated riders. Now when we drive by the outdoor ring and the barns, past the horses I used to know turned out in the pastures, I always look away.