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"My life today" as told to Kathy Brewis

by Christopher Reeve

"I wake up at about six thirty, feeling more like stone than flesh because I've lain rigid all night. I use the hour between then and when Dana gets up to adjust between my dreams and the reality of my situation. I've never been disabled in my dreams - I'm sailing, riding, traveling, making films. A few years ago this was a traumatic time, but I've found a way to make it productive by looking ahead to the day.

"At about seven thirty, the morning nurse and an aide come in and turn on the radio - WNYC, which has news and classical music. I have coffee and we begin the motion exercises that help turn me back into flesh. We also use a functional electronic stimulator to contract the muscles and keep up tone. Being unable to do things for myself has taken a conscious effort to accept. I have to be washed and dressed warmly. One side effect of the spinal-cord injury is you tend to feel cold, because your thermoregulator is out of whack.

"I have a bowl of cereal and half a grapefruit, and then, my day depends on whether I'm home or traveling. Over the past five years, I've flown to almost every state. I speak at schools and colleges, rehab centers and meetings of neuroscientists. You really one have two choices. One is to admit defeat. The other is to say: 'This appears limiting, but let's see what can be done.' It isn't just wishful thinking. Scientists now believe the spinal cord can be repaired....My hope is that even though President Bush has approved only limited stem-cell research, we'll benefit from development overseas.

"The accident itself makes no sense. I remember going out to the starting box, and then I'm a complete blank until three days later. My first reaction was acute embarrassment that I'd had such a serious injury because of a very simple mistake. The jump that my horse refused was easy, and why I didn't stay on I don't know. It was not as though I was trying to jump the Grand Canyon on a motorbike.

"I have a gym at home, and three times a week I'm lifted onto a special bike with electrodes to stimulate the muscles. Just after the injury, I could only 'cycle' for five to ten minutes. Now I last an hour and cover over ten miles. At eleven thirty, I go into my office, which looks onto woods and a pond. I use a voice-activated computer.

"We set up the foundation to support research into spinal-cord injury [in 1996; in 1999 it merged with the American Paralysis Association, becoming the Christopher Reeve Paralysis Foundation]. The work is overwhelming, so I have three full-time assistants. I spend most of my day on the phone or in dictation. I'm also working on a script, a true story about a girl [Brooke Ellison] paralyzed from the neck down who fought to stay in regular school and continued on to Harvard [with the help of her mother]. I work through lunch. The emphasis is on protein and avoiding foods that create gas. I have to be very careful with carbohydrates, as they're not easily digestible. I'm on massive doses of calcium for the bones, and I drink three liters of liquid a day to avoid damage to the kidneys.

"I work through until four o'clock, when my son Will comes home from school. Often he joins me in the office and I set him up with his homework. Will plays on a local hockey team, and if it's still light he'll shoot against the goal in the driveway and I'll coach. He was under three when I had my accident, so I missed a lot of activities with him. It's a gift to have my older children, Alexandra [at Yale] and Matthew [just out of Brown], nearby.

"Then comes the most difficult part of my day: For at least an hour before dinner I take the hose off. In 1995, I could only breathe unaided for about ninety seconds. I used to have to pull with my neck and shoulders. Now I can breathe just by using my diaphragm.

"I usually eat dinner at seven. Dana and I have a rule: Never talk about medical issues at the dinner table. When Dana's working - she's in a play at the moment - Will and I eat dinner together. Then we might watch a baseball game on TV - we're big fans of the New York Yankees.

"Three times a week we go into the city, to the movies or to visit friends. I have a nurse with me twenty-four hours a day, as the ventilator can fail at any moment. It's happened so many times, I don't stress about it anymore. We park and I'll wheel down the sidewalk. I do this to encourage other people in wheelchairs not to be ashamed.

"I go to bed at nine thirty, as it takes two hours to be put to bed. There's a nurse downstairs listening to my breathing on a monitor during the night. There are times when we turn it off, so Dana and I can have our time together. We don't feel like we've been invaded.

"An injury like this either drives a wedge or draws a family together, and I'm glad that it brought out the best in us."

2002 The Sunday Times, London


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