"It doesn't feel like a hospital here, does it?" says Christopher Reeve, his eyes sweeping the office in the quietly elegant home that he shares with his wife, Dana, and their 12-year-old son, Will. "That's because Dana, from the very beginning, wanted our family to live as normal a life as possible."
The "beginning" was May 27, 1995, the day the athletic actor, an accomplished rider, approached a routine three-foot jump in a Virginia horse show. His chestnut Thoroughbred balked and stopped short, and Reeve, his hands tangled in the bridle, catapulted headfirst onto the ground.
The injury rendered Reeve, now 52, a quadriplegic, confined to a ventilator and a wheelchair -- and initially contemplating suicide. But he titled his second memoir Nothing Is Impossible, and has spent the years since proving that point. Reeve works fiercely on his rehabilitation and has regained sensation over 70 percent of his body. He can go for long periods without his ventilator (he had electrodes implanted in his abdomen to help him breathe on his own). And he has stunned doctors by willing himself to move one of his fingers, and, in water, his legs and arms.
Reeve has labored tirelessly on legislation for spinal cord injury patients: His Christopher Reeve Paralysis Act goes before Congress this fall. And he hasn't put his creative life aside either. On October 25, A&E will air his second directorial project, "The Brooke Ellison Story," the real-life saga of an 11-year-old girl paralyzed from the neck down as the result of an auto accident.
Dressed in a striped polo shirt, white duck pants and running shoes, Reeve spoke with Reader's Digest about the film, his advocacy and his remarkable journey. On the rebound from a recent hospital stay, he displayed his usual tenacity, saying, "Your body is not who you are. The mind and spirit transcend the body."
RD: It's been more than nine years since the accident. How has it changed your perspective on life?
Reeve: I have more awareness of other people and, I hope, more sensitivity to their needs. I also find that I'm more direct and outspoken. It's important to me to say what I really mean.
RD: In your second book, you wrote about feeling angry after the accident. Have you accepted things now?
Reeve: I don't get angry, because it wouldn't do any good. I experience frustration sometimes, such as when I have a crisis, like I just did.
RD: What happened?
Reeve: I've had three bad life-threatening infections this year. This most recent was a blood infection caused by an abrasion on my left hip that I probably picked up one day when I was on the exercise bike. It seemed benign but developed into strep. Then a lot of major organs shut down. We're trying to figure out what's going on. Before that one, I got a severe infection in New Orleans just a few days before shooting the movie. I was frustrated: "This is not fair; come on. Let's not fall apart. I've come too far." So sometimes I get jealous of people who take their ability to move for granted.
RD: Do you get scared?
Reeve: No, I don't.
RD: How could you not?
Reeve: It's a proven fact that you can control panic by applying rational processes. In all my days of flying and sailing and riding, every now and again I got myself into a jam. On Christmas Day in 1985 I was flying over the Green Mountains in Vermont. Thick clouds, snowing. And the warning light went on. I looked out and saw oil all over the wing. I knew I had to shut down that engine and fly to Boston on the other. You're hoping it doesn't develop a problem too. But the chance of a multi-engine failure is very, very remote. Literally, you use your brain to stop panic. I've had a lot of training in that area from my life before the injury.
RD: It's almost as if everything in your life up to the accident was preparation for this phase.
Reeve: That's probably true. I'm glad I didn't know it at the time.
RD: So what's the latest product of your determination, in terms of regaining movement or sensation?
Reeve: There hasn't been any new recovery since what was published in 2002. But I've been able to maintain most of what I achieved.
RD: Are you still optimistic you will walk again?
Reeve: I am optimistic. But I also know that, with time, I'm beginning to fight issues of aging as well as long-term paralysis. So it seems more difficult to project than it was five years ago. But I haven't given up.
RD: Has there been a change in your optimism?
Reeve: Hope, to me, must be based -- now knowing as much as I do -- on a projection derived from solid data. But, yes, there's been a change in my state of mind, because in May of next year it will be ten years [since the accident], and I doubt if by that time there's going to be a procedure suitable for me. At 52, knowing that a safe trial for me may still be years away has changed my perspective. I didn't think it would take this long.
RD: What's been the hardest part?
Reeve: Watching the slow progress of research in this country. But globally, I'd say we're doing quite well. There's really impressive work going on in Israel, the U.K.,Sweden, Singapore, China. Spinal cord injuries know no boundaries, and breakthroughs that will serve Americans may well come from overseas.
RD: Tell me about the Christopher Reeve Paralysis Act.
Reeve: It's broken into three parts. One is for biomedical research. The other is rehabilitation research. The third is for quality-of-life programs. It would create five centers across the country, to make sure that there is support for people living with paralysis. Patients do better the sooner you get them up and moving. Put them in pools, on treadmills, on exercise bikes -- anything to keep the systems of the body from breaking down. No magic pill will cure spinal cord injury. It'll be a combination of a drug therapy, or procedure, plus rehabilitation.
RD: Does the Act have broad support?
Reeve: I'm quite optimistic that it will pass, because there's nothing controversial about it. It doesn't even mention embryonic stem cells.
RD: What's your position on embryonic stem cell research?
Reeve: I advocate it because I think scientists should be free to pursue every possible avenue. It appears though, at the moment, that embryonic stem cells are effective in treating acute injuries and are not able to do much about chronic injuries.
RD: How have political decisions slowed stem cell research?
Reeve: The religious right has had quite an influence on the debate. I don't think that's appropriate. When we're setting public policy, no one segment of society deserves the only seat at the table. That's the way it's set in the Constitution. So debate all we want, hear from everybody. And then allow our representatives to weigh the factors and make laws that are going to be ethically sound, moral, responsible, but not the result of undue pressure from any particular entity.
RD: Is it hard to be patient?
Reeve: I've lasted more than nine years, so I can wait a little longer. I also realize that a lot of people are watching me, to see what I'm going to do. I want to make sure I'm making a smart choice. I'm not at a point of desperation where I'd say, "Just somebody fix me, anywhere."
RD: Did you ever feel that way?
Reeve: I was much more impatient five years ago. I started out saying, "What do you mean you can't fix the spinal cord?" I remember telling a neurosurgeon, "Don't give me too much information, because at the moment my ignorance is my best asset." Then, over time, as you learn more about the complexities of the central nervous system, and you learn to balance your life -- even to get a life back -- your perspective changes.
RD: You went nearly 50 years without religion in your life. What made you recently join the Unitarian Church?
Reeve: It gives me a moral compass. I often refer to Abe Lincoln, who said, "When I do good, I feel good. When I do bad, I feel bad. And that is my religion." I think we all have a little voice inside us that will guide us. It may be God, I don't know. But I think that if we shut out all the noise and clutter from our lives and listen to that voice, it will tell us the right thing to do. The Unitarian believes that God is good, and believes that God believes that man is good. Inherently. The Unitarian God is not a God of vengeance. And that is something I can appreciate.
RD: What kinds of exercises are you doing now to regain movement?
Reeve: I haven't been able to do as much as I did before. Normally I would spend three or four hours in the morning and maybe two hours at night exercising. The program is centered around the bike. Electrodes are attached to my leg muscles, and as they fire, they innervate the muscles to spin the wheel. Then I do something called E-Stim. Electrodes are placed on the major muscle groups, and as they fire, they work the muscles. That's how I've been able to keep up my strength.
RD: What really keeps you going?
Reeve: The love and support of my family, and the fact that I'm needed. I'm working. I focus on the opportunities that come my way rather than on the things that haven't arrived yet.
RD: Tell us about "The Brooke Ellison Story."
Reeve: It is a remarkable story of somebody with a severe disability who's determined not to be left back. I felt that if I could find one compelling story about a family coping with a spinal cord injury and creating a new life in spite of it, I wanted to do that one film -- and then go off and make a comedy, and not feel guilty! I hope it will do more than all the speeches I've given to raise awareness about spinal cord injury and disability in general.
RD: What has been the biggest loss as a result of your condition?
Reeve: The loss of freedom as I used to understand it. I still have creative freedom, and I have basic freedom, but not the way it used to be.
RD: And what's the biggest gift?
Reeve: The growth of our family, the support we give each other -- my two oldest kids, and Will, and of course Dana, who is by my side no matter what. And that's really extraordinary.
RD: How has this changed your relationship with your wife?
Reeve: I think it drew us even closer.
RD: What's the first thing you would do if you regained movement tomorrow?
Reeve: Complete movement? Restored to normal? Mmmmm... Take full advantage of having complete freedom back again. And you can read between the lines!
RD: You've talked people out of suicide who've just suffered the kind of injury you had. How do you do it?
Reeve: I tell them about a lot of things that are available, what's happening with research, particularly for the acute phase of injury, and what opportunities there are for rehabilitation. And I tell them that even though you can't imagine building a new life now, you need to wait until everything stops spinning and you can look at it more clearly. In the meantime, don't do anything rash. I haven't lost anybody yet. And it probably happens, gosh, sometimes as much as once a week. They call from all over the country and all over the world.
RD: It's incredible that you take the time to do that.
Reeve: How could I not?
Bonus! Exclusive outtakes from our interview with Christopher Reeve only on rd.com:
For more of Christopher Reeve's thoughts on stem cell and spinal cord injury research, we've including the following outtakes from our interview:
Don't forget that it's only been a little over a decade that scientists finally agreed that the spinal cord could possibly be repaired, so I think we've come a pretty long way. But I don't think we're doing as well as we could here in the United States. Globally, I'd say we're doing quite well. There's really impressive work going on in Israel, the U.K., Sweden, Singapore, China. Spinal cord injuries know no boundaries. Breakthroughs that will serve Americans may well come from overseas.
I look at things in a pretty logical way and try to keep the emotion out of it. And if you ask a very simple, two-part question of some opponents of embryonic stem cell research, it's incredibly hard to get a straight answer. The question is, Where do the embryonic stem cells that scientists want to study come from? Answer, in vitro fertility clinics. There are 400 of those clinics around the country. There are 185,000 Americans walking around today who were born in those clinics.
The second part of that question is, if you're opposed to the harvesting of embryos from leftovers in those clinics that are going to be discarded as medical waste, do you object to in vitro fertility clinics? And they can't answer that.
It's just very interesting that, as far as I'm aware, there's never been legislation, since 1981, to ban fertility clinics in any state. And yet, people have a problem with taking, with informed consent of the donors, the excess embryos that aren't used. And there are 400,000 fertilized embryos sitting in freezers that will be thrown away as medical waste. They keep them for a brief time as there's a possibility of a sibling. And by the way, you don't need to have a perfect embryo to get embryonic stem cells. It doesn't need to be that viable. Because you're talking about the cells when they're only three to five days old. So this is not like a baby that you're killing.
My main hope for my foundation is to grow it exponentially so that we can continue to fund the cutting edge ideas, the scientists who are ready to move out of the laboratory and into human trials.
But they need help with the first step, which is getting to a phase one trial. A phase one trial demonstrates safety. But many biotech pharmaceuticals don't want to get involved until after phase one, when they know that something might be coming along. "Aha, that's safe. Well, maybe it'll work." So our foundation needs to help with the first push, getting promising therapies out of the lab and into the first phase of FDA trials.
A few weeks after this interview took place, Christopher Reeve contracted a severe infection that spread through his body. He died on October 10, his family by his side.