[Excerpted from “The Missionary Reeve,” New Mobility magazine, Nov. 2002].

On Aug. 12 I received an unexpected phone call from Todd Doughty, a Random House publicist, asking if New Mobility would be interested in interviewing Christopher Reeve. The bait was too tempting to pass up. Reeve’s new book — Nothing Is Impossible: Reflections on a New Life — and the documentary, would show him standing and walking with help from others — in a swimming pool.

To prepare for the interview, I read both of Reeve’s books, pored over articles, transcripts and videotapes, memorized the TV guide, and talked with Sam Maddox, founder of New Mobility, who had interviewed Reeve six years prior, just a year after his injury. “See if you can find my jacket,” said Maddox, just before hanging up. “I left my jacket there and no one’s ever been able to find it, like it disappeared into thin air.”

To ensure that I’d have a lively discussion with Reeve on his favorite topic, I talked with Nigel Cameron, a bioethicist who questions the ethics of embryonic stem cell research and therapeutic cloning. Reeve promotes this latest hope for cure of neurological disorders with missionary zeal, while Cameron claims, aside from his ethical concerns, that “presuming cure from basic science is absurd.” They have testified on opposite sides of the issue before Congress.

Reeve’s New York home is fairly new — built in 1990 — remodeled for accessibility in 1996 after his return from rehab. At first glance it appears modest but is actually quite large, comfortably secluded in woodsy Pound Ridge opulence. For some reason I expected to be greeted by snarling Rottweilers and gray-suited men with walkie-talkies. Instead, a thirtyish woman with red hair emerged from the house with a warm smile. “You’re welcome to look around to your heart’s content,” she said. “Christopher will be ready shortly.”

My curiosity led me straight to his exercise room, where the magic happens, we are told. I expected to find futuristic equipment spaced around a large indoor swimming pool. What I saw was a modest rumpus room. In the corner near a sliding glass door stood a tilt table much like the one I remembered from my rehab days. On the wall nearest the sliding doors sat a functional electric stimulation bike — the Ergys 2, made by Therapeutic Alliances. On the opposite side of the room sat a similar machine — the StimMaster. Framed freehand calligraphy hung on the walls — “You are Everything You Choose To Be,” and a timeline entitled, “Progression of Recovery.” The timeline ended about a year after his accident, in May 1996.

A doorway led to a hall that gently sloped up to a kitchen area. To the right of the door was a smaller standard exercise bike. I entered the hallway and to my left was an open closet. Maddox’s jacket? Maybe a dusty red cape? No, nothing but sports equipment — soccer balls, basketballs, hockey sticks, helmets and protective masks, equipment bags, enough stuff for a small team. To my right a shorter hallway was clogged with coats and shoes, maybe a dozen pair. So how many people lived here?

I wheeled up the gentle slope, into the area adjoining the kitchen. “I see you made it OK,” came a familiar voice from my left. There sat Reeve in the kitchen-dining area, tilted back slightly in his power chair, attended by three people, light streaming in from a south-facing window, in the early stages of being made up for the photo shoot. He smiled and reiterated what I had been told earlier — make yourself at home. He would be ready in about 45 minutes. We would shoot first, then he would take off his make-up for the interview.

Update

Christopher Reeve will always be remembered as the man who exemplified hope, pushed back the limits of recovery and redefined what is possible in the world of spinal cord injury. In less than 10 years as a quadriplegic, he accomplished far more than many nondisabled people do in a lifetime. And while some may consider it a shame that he died before he achieved his dream of walking again, many of us know a larger truth: He began his journey with the desperate cry of wanting to take back his life, and by the time he had taken his last breath, it was clear that he had done just that — and he did it without walking a single step.
July 2014

I felt a little awkward, as if I had walked in on someone in a bathroom. Reeve’s make-up artist would earn $775 for transforming her famous client from a middle-aged man with no eyebrows and alopecia areata, a pre-injury hair loss condition (testosterone supplement therapy is promoting new growth), into a camera-ready face that looked a decade younger. Not bad for an hour’s work. Random House would pick up the tab.

I wheeled back into the exercise room and there was Will, Reeve’s 10-year-old son, exercising on the small bike. He smiled and talked freely, clearly at ease: He liked to work out with his dad, they often biked two miles together, all of the sports equipment and most of the coats and shoes were his, his brother Matthew was in England working on the documentary, his sister Alexandra was away at Yale, he was getting in shape for hockey season, hockey was his favorite sport, he would go to his first practice of the season that night, you can go anyplace you want in the house, really you can. I was beginning to feel a little like a house guest.

The interview took place in the living room, windows looking out on a spacious circular driveway. I waited and snooped: A music stand held a handwritten composition for beginning saxophone entitled, “Not the Prettiest Song in the World” — food for the other side of Will’s brain. In the corner of the living room sat a glossy black piano which held more serious fare — Mozart, I believe. Perhaps Alexandra or Reeve’s wife, Dana, played. Reeve himself used to, of course. And then an absurd notion surfaced, no doubt from watching too many made-for-TV movies: Maybe no one had dared touch the music, or the piano, since the day of his accident. Maybe Mozart patiently awaited Reeve’s return, as did his sailboat, his airplane, his love of riding horses, his sex life, his career as an A-list actor. It occurred to me that those of us who have had fewer opportunities may have difficulty truly understanding the depth and breadth of what Christopher Reeve has had to give up.

He appeared suddenly in his sip-and-puff-controlled power chair, a changed man from only minutes before, seemingly vulnerable now, cleansed of makeup, ready to face whatever questions I would pose. Unlike other well-known figures I have interviewed, he had not requested questions in advance, nor had he asked for editorial review.

Over the next two-and-a-half hours we talked about many topics related to disability. Reeve is a master at matching the rhythm of his ventilator to his phrasing, squeezing out his last word, or rush of words, just before running out of air. Midway through our conversation he sent out for sandwiches at his favorite deli. We continued talking while Reeve’s aide, Bill Bernhev, stood at his side, offering well-timed bites and sips from a straw.

In all I spent four-and-a-half hours at Reeve’s home. I saw that he treats his staff — nurses and aides — cordially and with respect. An atmosphere of mutual affection and lighthearted banter predominates. Reeve was gracious, hospitable and very generous with his time.

Since that day I have followed his media coverage closely. Several quotes that I thought were spontaneous turned out to be memorized — right down to the exact nuance. But carefully phrased sound bites are to be expected from an actor who could once memorize 15 pages of script in 30 minutes, a public figure who speaks at banquets, fundraisers and congressional hearings, chairman of the board of an influential nonprofit foundation, an experienced political activist, a man who has an agenda, a mission. But what is most evident about Christopher Reeve is his passion for bringing about change, not only for himself, but for others who must cope with paralysis every day of their lives.

TG: The subtitle of your book is “Reflections on a New Life.” How have you changed in the seven years you’ve been paralyzed?

CR: I think the first important lesson I learned was that I could function at a slower speed, because my life before paralysis had been very fast-paced. And adjusting to the slower speed, learning to be still, learning to spend hours perhaps in one place, learning to be much more patient than I’d ever been before. Also learning how to use words, how to communicate effectively with words rather than having the body as an assist to demonstrate things, particularly in bringing up children.

But the most important discovery was that even if your body is damaged, the heart and the mind are not necessarily damaged. To some extent, the mind is. However, when the decision to live is made, what follows is the decision to optimize health, then that leads to exercise, that leads to better nutrition, that leads to trying to avoid infections and all the other complications that come with a spinal cord injury and the breakdown of the immune system, and then comes the desire both to accept the disability, or in my case anyway, to accept the reality of being disabled graciously, and yet do as much as possible to move the field forward.

TG: You mentioned complications. Has it been a financial burden on you having to deal with quadriplegia?

CR: I’m extremely lucky. Because I was a public figure for many years before the accident, publishers were interested in my life story, and there was an advance, a very generous advance, from Random House for my autobiography. That came quite early on … so I left rehab with a contract to write a book. And an advance that helped pay for remodeling our house.

TG: One thing that was hurtful to Teddy Pendergrass after his accident was the press coming out with headlines like, “Who’s going to be the next Teddy Bear?” — as if his life was over. Did you feel this was the public perception of you — no more Christopher Reeve, actor?

CR: I had so many health problems following my injury. I was injured in late May of 1995, spent a month in ICU, went to Kessler Rehab in New Jersey in early June of ’95, then wasn’t released until just before Christmas of ’95. And I had many, many health complications — collapsed lung, pneumonia, two blood clots, a dislocated hip, a broken femur, broken humerus in the left arm — I was dropped by a couple of aides who were taking me off the bike. I also had severe anemia. I did wonder what I was going to do for a living, what would happen to my acting career, but I also always wanted to direct. I figured that the acting opportunities would be minimal, but I thought that I would be able to direct.

TG: Are you looking for projects now?

CR: I did In the Gloaming in 1996, spent 1997 writing Still Me, did Rear Window in 1998 — that was actually a very rewarding role, and the reason I did it was not to try to outdo Jimmy Stewart, but simply to show the public that a disabled person still has the resources and the capability to cope with a dangerous situation. In the movie, you see computer technology, you see the voice-activated computer at work, you see a sophisticated intercom system at work. …

TG: It was educational as well as entertaining.

CR: Right, that’s why I did it. Because too often disabled people in movies are portrayed as villains, the bad guy, or they’re very angry, self-pitying. I think for example of Gary Sinise’s role in Forrest Gump as a Vietnam vet. He’s bitter and angry and lost until the very end of the movie.

TG: But he does have a transformation.

CR: He does have a transformation, but not every [character] has that transformation.

TG: We didn’t see him go through that process.

CR: No, just suddenly he shows up at the end, right. But it wasn’t his story. There wasn’t time to tell both stories. However, in Coming Home, with Jon Voigt, another Vietnam vet, the anger, the bitterness was there. So I wanted to play a positive role model as a disabled individual, and that was the perfect opportunity.

But I do have something that we’re working on now, we’re in the casting phase, and if I get the cast that I’m hoping for, as I did with In the Gloaming, then I’ll go ahead. The cast is everything. I’m a lot more choosy than I was before the injury — back then it would just be, you know, sometimes you do one for money, and then you do one for art. This time every one’s gotta be for creative satisfaction. It really does.

TG: You’re talking about the purpose of the project, and then there’s the larger purpose of your life. I was struck by your relationship in rehab with your friend and attendant, Juice, and his outlook that there’s a purpose to your being disabled and being in a chair, as if God is at work somehow in the details. But you wrote that you put your faith in science instead of God, and then later on, you wrote, “God doesn’t make these things happen (doesn’t cause us to be injured), but where grace enters is in the strength you find to deal with it. You may not know where it comes from, but there’s an enormous power at work.” There seems to be a gap between those two statements. You’re saying you put your faith in science instead of God, and yet you also seem to be saying you’ve been blessed by God’s grace, to find the inner resources that you need. Is that what you’re saying?

CR: No, not quite. Still Me was written in 1996 and ’97, and we’re talking in 2002, and I wrote Refections on a New Life in early 2002. What I meant was I don’t think that God is going to develop the technology of therapeutic cloning, which may be the most promising or effective way of curing a lot of diseases. However, certainly, if there is a God, you could assume that he’s given us the brainpower to come up with that kind of solution. However, what I’m really talking about is that it was not an assignment, it was not something that was given to me to do by a Higher Power. I feel that it was random, just as I feel that all the people who were killed in the tragedy of Sept. 11, that that was not preordained for them. But for someone who survives a traumatic disease or disability, or who lives with a disability, that there is a Higher Power at work that we don’t need to understand, we simply need to use it. We need to recognize that it’s there. I’m saying that there are resources within ourselves that we know very little about. I mean, think of all the people who’ve been told you have six months to live, and now it’s 10 years later, and they’re still around. Or people who’re told you’ll never walk again, and that isn’t the case.

TG: Which brings us to the recovery chapter in your book. I think it’s going to mean a great deal to many of our readers.

CR: I hope so — I really do. Because the take-home message, and my philosophy about recovery, is do not accept absolutes. Because scientists have found that there is energy and memory stored in the body. There are two particular areas: a central pattern generator in the lumbar area, and a central pattern generator in the diaphragm area. What this means is there are areas in the body that need only minimal input from the brain in order to function. Take, for example, people who are injured at your level, T-11. Today people with that level of injury can expect to walk again [incomplete injuries] by using treadmill therapy. The pioneer in that field is Dr. Reggie Edgerton at UCLA. He recognized the potential of the central pattern generator in the lumbar area years ago, and he felt that logically, if you think about it, it doesn’t take much brainpower to walk. You don’t have to think about it when you’re stepping.

So given that it doesn’t take a lot of brainpower to walk, he started putting people on treadmills, particularly people who have their upper body. He’s found that if they step for about an hour a day for 60 days, then they’re able to walk on their own across ground. Usually with just a cane … about 400 to 500 people who have been injured in the T-levels are now walking. They’re not cured, but they’re rehabilitated, through this very aggressive rehabilitation.

TG: Is your foundation doing something to support that?

CR: Yes, we fund Reggie Edgerton. He’s also funded by others, but he’s a member of our consortium. We have nine scientists, ranging from San Diego to Zurich, who work together doing common experiments, and Reggie’s the latest member to join the consortium. The immediate goal is to get more and more of these centers established around the country and around the world. But what I hope to see, and one of the goals of the foundation, is to get insurance companies to understand the win/win situation here.

TG: You mean the benefit being increased blood circulation, increased bone density and better overall health from using treadmill therapy and functional electric stimulation?

CR: Yes, but it depends on the level of your injury. I’ve been on a treadmill, and that’s not going to get me walking, but it definitely is cardiovascular, it’s bone density. For somebody like me, it’s a technology that will keep me out of the hospital. And then for other people, with low-level injuries, they literally will get up and walk, and go back to work, go back to school. I don’t want to speak for everybody else, but none of us want to be a drain on our insurance company. And we’re also, most of us, probably really tired of having to fight for every necessity. The way that the insurance companies think hasn’t changed yet. We hope that the study that John McDonald has done on me in St. Louis [see sidebar] will help bring about a change.

[Editor: This was the beginning of a decades-long commitment by the Reeve Foundation, and others, to build upon Reggie Edgerton’s research, and that of Susan Harkema, that has paid off in combining locomotor therapy with epidural and transcutaneous stimulation, and to this day (2021) this therapy holds the greatest promise for widespread functional gains in restoring spinal cord function].

TG: What do you hope will be the response from New Mobility readers when they see you in a swimming pool taking steps with help from others?

CR: I hope that they’ll realize that exercise is really critical for basic health, as well as recovery, and all points in between. So whether it means staying out of the hospital or actually getting out of your wheelchair, it will depend on how much exercise you get, and depend on the physical condition you’re in and the level of your injury, but everybody will benefit.

For instance, Kent Waldrep, who was injured in a football accident 20-plus years ago. He has use of his upper body. John McDonald put Kent on a bike with electrodes and even after all that time, 20 years-plus, he was able to peddle the bike with the use of electrodes. And now he’s incorporated it into his routine, after all this time, to start building up strength in his legs. Because think again what it means to circulation, muscle mass, bone density.

TG: Here I am with 37 years in the chair, and like Kent, my thinking has been I’m not going to walk again so I’m just going to concentrate on other things. But after reading your chapter on recovery, now I’m thinking that electrostimulation could at least help get rid of chronic decubitis problems on my ankles.

CR: Oh, yes, that’s a circulation issue. If you were to get your muscles zapped, even if you were just to do legs, with FES, two or three times a week, you’d find that the muscle mass would slowly start to return. But the first thing that would happen is that you’d get much better circulation in your legs, and that would start to fix the skin breakdown problems you’re having with your ankles. I mean, it benefits everybody.

But I didn’t become interested in exercise just for health, but also for self-respect. I didn’t want to look down at my legs and see noodles where once there’d been strong athlete’s legs. So yes, I appreciate the cardiovascular and I appreciated all the medical stuff, but I was also thinking about self-image. Perhaps it’s an actor’s vanity, I don’t know, but it helps you keep from sliding downhill back into depression.

TG: How can we make this kind of exercise equipment available to more people?

CR: People need to get in touch with rehab facilities all across the country, because most of them, if not all of them, have a rehabilitation research fund, they have a pot of money to research new ways of treating people. They have to do that in order to stay competitive. So that’s good. Competition in the marketplace. You would go to say, Rancho Los Amigos, and say, I want, as an outpatient, to come and get on a [FES] bike. I want to come three times a week, or whatever. Or I want to be able to do treadmill walking therapy, and if enough people who are outpatients demand that, they can afford to put that in.

There’s no reason why an FES bike has to cost $15,000. The reason they cost $15,000 is because they’re so few people buying them, and the insurance companies aren’t reimbursing for them, but it would be possible to make a bike that only cost $1,500 dollars instead of $15,000. And then people could afford to have them in their homes [see sidebar interview with John McDonald about home-based therapy].

TG: Everyone has their way of coping with disability. Your way of coping has been to focus on future cure possibilities, but also recovery — which we’re talking about now — that may fall short of complete cure. Kind of a coping through cure outlook. Is that an accurate assessment of how you cope with your disability?

CR: Sure. You drive toward cure, and in my case I’ve literally compared it to the moon shot. Let’s hurry up and work as fast as we possibly can, because sometimes — it has to be said — researchers get used to doing research rather than connecting their work to a specific outcome, where in the moon shot, a private company like Sperry-Rand, or Northrup, or Rockwell, they had a specific task. Come up with a propulsion system, come up with a navigation system, come up with a lunar module. So there was … an end goal. And what I have been trying to say — and of course, I began this armed with very little information, it was really all attitude — is why not think about curing paralysis in the same way? Not only paralysis, but Alzheimer’s and Parkinson’s and diabetes and ALS. I mean you name it, go down the list, and say, “Let’s get the job done!”

TG: And you put yourself out there on the line when you said you’d be walking.

CR: I said I hope to stand by my 50th birthday and toast everybody who helped me along the way. That was my exact quote. That’s exactly what I said.

TG: Have you ever regretted saying that?

CR: No. Because I think it helped move the field forward. And even though I won’t stand on my 50th birthday, I believe that if we had had full government support, funding from the NIH, cooperation with the pharmaceutical companies, the private sector, if everybody had been working together, as they did for the moon launch, once embryonic stem cells were isolated in 1998, I believe that we would be in some kind of human trials by now. …

TG: You and others who strongly advocate embryonic stem cell research have used the term “clump of cells” to describe what those who oppose this research on moral grounds refer to as a human life or an individual.

CR: I say it’s a clump of cells after the first 14 days.

TG: But if this embryo derived from nucleus transplantation is merely a clump of cells, then how do you explain the amazing potential being assigned to it? Do you see what I’m saying? Semantically, to say that it is a clump of cells is to imply that it’s merely matter with not much else going for it.

CR: No, it’s a clump of cells that can be engineered to produce stem cells. That’s what we’re looking for, we’re looking for stem cells that contain a patient’s DNA so that we avoid or minimize the possibility of rejection by the immune system and that these stem cells can be taught or will instinctively know what job to perform in the human body. And the proof of principle has already been established in a number of studies in rats.

TG: What I am trying to get at is the idea that DNA — let’s call it a blueprint, a design, that’s already there — that once, whether it’s skin cells or sperm, once the egg comes into contact with that other DNA, the process of cell division starts, and left to its own devices, it’s automatically going to create a human life like you or like me. I mean each one of us, everyone here on planet earth, everyone we can talk to, everyone who has a position pro or con, belongs to the same club, and the club is the Human Embryo Club. We all came from that.

CR: But I draw one huge distinction, though, and that is that I believe that — I don’t want to sound like I’m preaching here, I’m just telling you what I believe, many other people believe the same, I’m not alone here — that human life results from the union of male and female. But therapeutic cloning does not necessarily result from the union of male and female. In fact, Dolly the sheep came from the DNA of a female sheep. That is abhorrent to me in the extreme. I wouldn’t want to see any, any nucleus transplantation result in the reproduction of a human being. Ever. …

TG: What about adult stem cells — I read that fat cells have been coaxed into nerve cells.

CR: They’ve actually also been able to take cells from bone marrow and turn them into neurons. However, even though that’s been accomplished, as yet there’s no proof of principle of what would happen if that was applied to the therapy. In other words, sort of in theory, now we have produced neurons out of bone marrow cells or adult stem cells, but we still don’t know how they would work. Listen, if adult stem cells were able to do the job easily, that would be great — avoid the controversy, move on, let’s get the job done. But the thing is that, speaking as one patient, I want whatever’s going to work fastest. …

[Editor: As of this day in 2021, Wise Young has had promising results in isolating stem cells from umbilical cord blood, followed by intensive locomotor training.]

TG: Have you ever thought to yourself, “I think I’d like to just chuck this advocate role and just relax and have my life with my family and just let things roll by, let someone else do it”? Have you ever had that feeling?

CR: Yeah. When Superman opened. Exact same thing. It was like, by the way, folks, I needed wires to fly, OK? And I’m actually from New Jersey, not from Krypton. Because you know we had to do a lot of — it’s just amazing to me, but literally, in interviews — tell parents to keep an eye on their kids, because there was a rash of kids putting on red capes and jumping off of things. You know, jumping off of tables, or … Fortunately, I don’t think too many went out the window, not that I’m aware of. But that was the impact of the movie. When that movie broke in December 1978, there was definitely a period, probably for the next six months, where it was just absolutely an onslaught.

TG: I take it that you haven’t come to the point in your role as an advocate for cure where you have an inclination to leave it behind.

CR: No, no, because the frustration is very motivating. If everything was just sailing along fine, if scientists had been doing the work they should have been allowed to do for the last four years, then I’d be much happier. But, you know, with the prolonged wait for the decision by President Bush about the use of embryonic stem cells, and this whole debate in the Senate about therapeutic cloning and in the House, it’s no time to slack off.

TG: Recently your foundation broadened your scope to go beyond the confines of research and cure. Now you’re actively addressing the issues of coping with disability in everyday life with the new resources center.

CR: We’ve always had a quality of life program as part of what the foundation does. We’ve given out over the last few years an average of about $700,000 a year for quality of life programs. But they’re small grants of $5,000, $10,000, and it kills us because we have to say no to so many worthy projects. But we were given money by Congress through the CDC — Centers for Disease Control — $2 million a year for the next three years — to open the Christopher and Dana Reeve Paralysis Resource Center, and give out grants for accessibility, for transportation, for recreation, assisted living centers, all the things that people need. Also, there are information specialists there, people who specialize just in one area.

This is for people who’ve been newly injured or people who have been living with a disability for more than a couple of years, but were paralyzed for any reason. Some people think that we’re only supporting spinal cord research. That’s not the case. That’s why we’re called the Christopher Reeve Paralysis Foundation. Because it’s paralysis that might result from a stroke, or MS, brain trauma, ALS, muscular dystrophy, spinal cord injury, Guillaume-Barre, you name it. Any reason why you’re paralyzed. We want to reach out to the entire community of people who are paralyzed.

TG: What would you like the future of rehab to be? Say five years from now, someone has a spinal cord injury, can you envision what you’d like the rehab process to be?

CR: … if we can really focus on minimizing the damage right after the injury, that’s really really critical. If you can deal with that, that will change part of the service of rehab. Not for everybody, but I’m saying that you’d be seeing people put on treadmills right away, you’d see people if they need a surgery having it done right away, rather than waiting, hopefully by that time there would be other drugs that would reduce swelling and inflammation — just stopping the damage and rehabilitating people as quickly as possible.

TG: Sounds like a complete paradigm shift for rehab. Instead of teaching people how to live from wheelchairs, the idea would be to maximize their health, maybe even get them out of chairs as soon as possible.

CR: Yeah, no more “Treat ’em and Street ’em.”. …

TG: Now you are approaching your birthday, the big 50, what does it mean to you?

CR: I think that if I’d been on my feet, I might have found turning 50 quite depressing — because now I’m surrounded everyday by people who love me, support me and believe in our mission and want me to go as far as I can possibly go. Although I’m still not allowed down to the mailbox by myself.