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Still me – Christopher Reeve

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 travelled 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 drive-way with someone else.