Reeve's Super Struggle

This story appears in the May 11, 1998 print edition of U.S. News & World Report.

At first he still looks like Superman. The shoulders are broad, the eyes bright blue, the hair grayer now but still thick. But a plastic ventilator tube rubber-banded to a bandage on his throat keeps Christopher Reeve breathing. His hands and feet are strapped down so he doesn't injure himself when he thrashes involuntarily. A "sip and puff" tube in front of his lips lets him move the wheelchair that holds his 6-4 frame. In his new book, Still Me (Random House, $25), Reeve explains how his life has changed since a May 1995 riding accident left him a ventilator-dependent quadriplegic. U.S. News Senior Writer Nancy Shute spoke with the 45-year-old actor and director in his home in Bedford, N.Y., where he lives with his wife, Dana Morosini, and their 5-year-old son, Will.

You've got all kinds of medical equipment and home health aides, and you've remodeled the house to be wheelchair accessible. So it takes a big effort to be immobilized? Yes. What people don't realize is that when you have a spinal-cord injury, you're not just sitting in a wheelchair. Your body is deteriorating all the time. And if you let it, you'll end up in big trouble. Since I came home, in 1996, I have been hospitalized 11 times for everything from a collapsed lung to a broken arm. I was dropped by one of my aides who was transferring me to the chair, and I went straight down on my arm.

One of the most serious things that can happen is skin breakdown. See, the average person constantly shifts his weight a little so no area of the skin gets undue pressure on it. And we're not able to do that. Right now I have a wound on the outside of my left ankle that is just closing, and I've been working on that since last Memorial Day. It was down to the bone, and I was just a hairsbreadth away from having to have my leg amputated because it became infected.

Now, to direct a movie or act in a movie or go around the country making speeches, that's the excitement and the challenge in my life. But at any moment I may have to cancel a speech because suddenly I've got a lung infection. So people should realize that a spinal-cord-injured person is fighting a tremendous battle all the time to keep the body from further breakdown.

You spend a lot of time trying to stay in shape for the day when there's a cure. I do some breathing practice every day. Since last summer I have been able to voluntarily expand my rib cage and take in a breath. I also do some exercise that keeps the muscles and bones in shape. I have special pants that have electrodes in them that are placed on my calves; they're on my quads, they're on all the major muscle groups in the legs. And I do an hour with them in bed in the morning, turning the voltage up as the muscles get stronger.

So you're still seeing progress? When I was first injured, I was not able to feel the bottom of my spine. About a year later, I developed sensation all the way down, and now, when someone touches it, it's painful. And that's a good kind of pain, believe me. Then there are the spasms. I could drive this wheelchair too quickly over a bump, and my legs and arms would flail, because the brain is not able to tell the body it's not a crisis, it's just a bump. The point is that having spasms is actually a good thing, because it means the nerves are still alive and making the body move.

How much function will you get back? Eventually, the whole thing. I think I won't be able to run around and play tennis. But I do think that I will walk, and walk fairly normally. I believe that human trials in spine regeneration are not far off.

When, do you think? Possibly by the end of this year or early in '99, and that's because the gap where the injury was is so small, the regenerating nerves will not have a difficult task of making connections on the other side.

You're ready to be a laboratory rat. Yes. There are certain scientists whom I trust implicitly. And if they were to say, "We're ready for you," I would drop everything and participate in the trials.

You're rich, you're famous, you played Superman. I was amazed to read that you've had to fight health insurance companies. At first, insurance was going to pay for only 45 days of nursing coverage, and I need a nurse around the clock because of the very real possibility that the ventilator, which pumps air into my lungs, will fail. The insurance company never would pay for a backup vent. So I went out and bought one. We finally got the insurers to pay for the nursing care, which comes out to about $350,000 a year. Between the insurance and what I pay out, running my life costs about $550,000 a year.

I'm thinking of all the people who don't have a spare $550,000 around. Yes, they run out of insurance within a couple of years because the ceiling is about $1 million, although I'm working on legislation to increase that to $10 million. Then the family has to sell its home, and then that money runs out, and the injured person ends up on Medicaid or Medicare in a nursing home. And a nursing home is nothing more than a human parking garage. If you were to give people the equipment they need—exercise equipment that would keep a quadriplegic's body from deteriorating, or even therapies where you could get the use of an arm and be able to drive a car—people would improve and insurance companies would pay far less.