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Barnes and Noble/America Online Chat with Christopher Reeve - May 7, 1998

Here is the interview:

Jessekay: Chris, is this your first online chat?

Reeve: Yes, it is.

Jessekay: Then let us welcome you to the first interview you've had in which we are all somewhat disembodied.

Reeve: Thank you.

Jessekay: Since you are, therefore, "one of us," let's start there. Do you see this medium of cyberspace as one that's particularly useful for people society labels as "disabled?"

Reeve: Yes. It's an essential tool. And, literally, a lifeline for many disabled people. I have Dragon Dictate. And while I was in rehab, I learned to operate it by voice. And I have enjoyed corresponding with friends and strangers with that system. Many disabled people have to spend long hours alone. Voice-activated computers are a means of communication that can prevent a sense of isolation.

Jessekay: So of all your muscles, it's fair to say that your brain is in tip-top shape?

Reeve: It's in the same condition as before the accident, but I wouldn't give it a rating! "Tip top" seems somewhat above me!

Question: I have been a quad since 1965. Could you tell us a little about the research -- where, who, how -- that is being done on spinal cord injuries?

Reeve: The research is being conducted all over the world. For the first time, scientists have begun to communicate and share their findings, which will result in faster progress. The leading area of research is in regeneration of nerves in the cord, which has been thought to be impossible since the time of the ancient Egyptians. Now regeneration has been achieved in rats. A rat with a completely transsected spinal cord can be treated with an antibody called L-1, and on a scale of 0 to l4 -- with 0 representing no movement and 14 being normal -- the rats now log at 12.5. The casual observer would have no idea there is anything wrong with the rats. Now, the question is, how to humanize this antibody and make it safe. Possible problems: toxicity or rejection by the immune system. But Dr. Martin Schwab at the University of Zurich is leading the field. He has told me human trials in regeneration may begin within a year.

Jessekay: In your book, at a part where you've just had the accident, you lay in the hospital and you realize, "I began to see there's so much love around." On our message boards and in our chat rows, you would be pleased, I think, to know how much affection there is for you among the members of AOL. So I wonder, is there any tangible or useful way that we can express our love for you?

Reeve: Just saying that is enough. I am very grateful to you, and to the people all over the world who have given me such support. It has helped me to worry less about myself and be more productive.

Question: Most of Dr. Jack Kevorkian's "clients" have been people with disabilities or chronic conditions; one of them a young quad. Do you think Kevorkian is a "helper," or does he belong in jail?

Reeve: I think it is up to each individual to decide what level of existence he/she can tolerate. If someone feels, after long and serious thought and consultation with loved ones, that life is too unbearable, then I have no objections to them deciding to terminate. But that should only be a last resort. I find that many people who are suicidal can be brought around by therapy and encouragement. I'd hate to see anyone with a spinal cord injury end their life; we are on the threshhold of new therapies and a cure.

Question: You have become a hero to many people. Who is your hero, or heroine?

Reeve: I believe that the real heroes today are ordinary people who persevere and endure against overwhelming obstacles. When I was a kid, I idolized larger than life figures, like Lindbergh and Houdini, or sports heroes. The definition I now have is more meaningful.

Question: How hard is it to be so personal and to have people know the intimate details of your life since the publication of STILL ME?

Reeve: I felt that if I were to write a book, it must include all those details, because the purpose of the book is to make people understand what it is really like to have a spinal cord injury. Too many people think we're just seated in a chair. They have no idea about skin breakdown, muscle atrophy, and all the other problems we face. So I think it's important to educate the audience -- more important than for me to be over-protective of my privacy.

Jessekay: In the book, your spirit leaves your body at one point and looks down on it from the corner of the hospital room. Do you draw any spiritual conclusion from that?

Reeve: I feel strongly that we are not our bodies. In fact, if a person says "my body," who is the "me" that is being referred to? Clearly, the spirit and body are two different things. And beyond that, I'm still searching for the meaning of it all.

Question: Chris, have you had any cranial sacral therapy done? I've been a quad for 20 years and it is helping me to get feeling back.

Reeve: No. I never heard of such a therapy.

Question: If there is one blessing that has come out of this horrible nightmare for you, what is it?

Reeve: I've learned that being is more important than doing. You can spend a lot of time sharing physical activity with someone -- a friend or one of your children -- without really communicating. Now I'm able to sit for two to three hours with one of my children or a friend and derive great satisfaction from real communication. Since I nearly died twice in 1995, I have less time for superficial talk or social niceties. I am eager to tell the truth, and hear it from others, more than ever before.

Question: When doctors and researchers tell you that the only thing that stands between you walking not walking is money (funding), what runs through your mind?

Reeve: That we have to get the money to the scientists so they accomplish their jobs! I can think of three specific ways to accomplish this: 1) The Defense Department has an annual research budget of $39 billion dollars, which is more money than they need. I feel that at least $20 billion of it should be given to the National Institute of Health; 2) Money from the tobacco companies should be given to research. 3) Also, a small amount from speeding tickets in every state should be given to research, since drunk driving is a prime cause of brain and spinal cord injuries. If we were to double the budget of the NIH from $13 to $26 billion, we could wipe out many diseases like Parkinson's, Alzheimer's, strokes, MS and spinal cord injuries in a very short time. Scientists know how to solve the problems, but as yet there is not enough grassroots support for Congress to appropriate the necessary funding. Remember that AIDS received no federal funding in l984. This year, it will get $1.3 billion. That is an example of how politicians do respond to public demand. Our job is to make enough noise so they'll be forced to pay attention.

Jessekay: Last question...How would you like us to make that noise on your behalf, and that of so many others?

Reeve: By calling or writing your representative in Washington -- congressmen and senators. The staff of every legislator counts the numbers of requests that come in on every issue. The sheer volume makes a difference. And also, remind them this is an easy decision for them; as research produces cures, the government will have to pay less in Medicaid and Medicare. They'll save lives and cut the deficit at the same time!

Jessekay: Okay, people, get writing! And Chris, you keep on. Thanks so much for joining us. Come back any time you want to be with 12 million friends.

Reeve: Thank you. I will.

To find out more about the Christopher Reeve Foundation, write or call:

Christopher Reeve Foundation
P.O. Box 277
FDR Station
New York, NY 10150-0277
1-888-711-HOPE

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