"I'm always whole, always active," Christopher Reeve says. "Either in the past or the future. I have never had a dream in which I am disabled in a wheelchair."
He is speaking from the industrial-strength chair that has been the central fact of his days for nearly three years, his hoarse and labored voice carrying over the in-out, in-out of a ventilator. The effect is a little shocking at first. His profile remains noble, and the broad shoulders, full chest and muscular thighs are a discomfiting reminder that this motionless figure used to be Superman. But Reeve, who has been referred to, horridly, as the most famous quadriplegic in history, easily takes charge.
His eyes, though they reflect the strain that rules his face, are confident and welcoming. For the fall from horseback that shattered his first cervical vertebra and broke the second did more than turn an athletic and almost unnaturally handsome movie actor into an invalid. It also transformed him into a nearly full-time activist and symbol, perhaps our culture's surest current recipient of a reflex standing ovation.
But Reeve, 45, wants more from us than damp-eyed applause. A cure for paralysis is not only possible but inevitable, he insists, and he pushes at every opportunity for more research funding. Then, too, there is his own reality, a fabric of dependence punctuated by mortifying rituals of body maintenance. He is sharing it all with his public in a bold and unflinching new autobiography, "Still Me."
Though the book is at times painful to read, its tone overall is positive, and throughout a long interview in the small, sunny office at his house here, the author presents himself as a rigorous and informed optimist. He offers not a hint of doubt that one day he will be back on his feet. What you may wonder is whether Christopher Reeve, a good, somewhat underrated actor, awakened three years ago in a hospital bed and found himself trapped in a performance that never ends.
One of the book's bigger surprises is that despite having the best available medical care it costs hundreds of thousands of dollars a year Reeve has been in very shaky health since the accident. Eleven times he has been returned to the hospital, often with life-threatening trouble: pneumonia, a collapsed lung, two blood clots, an infection that nearly forced the partial amputation of a leg.
"Part of what I want to communicate is the reality of paralysis," he says. "We're not just sitting down. Our bodies are breaking down. And the longer you sit in a chair, the more problems arise."
Until relatively recently, Reeve's May 27, 1995, accident which came on the third jump of a cross-country race in Culpeper, Va. would have been fatal. For reasons he will never know, his horse, Buck, put on the brakes in mid-jump. There were suggestions that he was spooked by shadows or perhaps a rabbit. The actor went flying over the horse's head, unable to break his fall because his hands were entangled in the reins.
"I had what's called a hangman's injury the same thing as being dropped through the trapdoor, then cut down and sent to rehab," he says. "You know 'Have a nice life.' But literally, my head was separated from my body and was put back on again."
He was airlifted to the University of Virginia Hospital in Charlottesville, where doctors devised a never-before-performed operation to reattach his skull to his spinal column. But at first Reeve had doubts. He told Dana that maybe it would be better for everybody if he slipped away.
Ask him about his paralysis and the answers come out in the well-formed complete sentences of a man who's had a lot of time with his thoughts. All subjects practical and scientific are discussed fully, but his emotional side, understandably, is expressed more sparingly.
Despair? "Usually I would talk to Dana about it," he begins, and then goes in another direction: "Or if I'm ever feeling that I'm being patronized, that really sets me off."
But it's all there in the book: "The thought that kept going through my mind was: I've ruined my life. I've ruined my life, and you only get one. . . . I'm an idiot. I've spoiled everything."
Of course, that was right after the accident. The losses he talks about now are the kind that show up in odd little pinpricks of realization. Like that moment when his nightly dreamscape comes to an end.
"Waking up is a little bit of a shock," he acknowledges. "There's a couple of minutes when I become aware of the whooshing of the ventilator hose."
He pauses a moment. "It saddens me sometimes that just when everything had come together, I went out and ruined it," he says. It is one of the few expressions of his sorrow that will come out on this day, and he quickly tempers it. "That's not the way Dana or any of my children feel about it."
A couple of years ago Reeve took a vow: He's going to walk again by his 50th birthday, which rolls around in September 2002.
Today's update: "I think if everything goes well, we may be ahead of schedule."
His confidence is rooted partly in studies of an antibody that, when combined with a nerve growth factor and administered to rats, facilitates regeneration of the spinal cord. The rats have regained much of their motor function. Reeve says human trials could begin as early as this fall, and he's been assured he's an excellent candidate.
"We're on the threshold of incredible progress," he says. "And that's not false optimism. . . . I wouldn't be able to play that kind of mind game."
He's a longtime activist for environmental and other causes, so when he became paralyzed it was natural that he add one more. The American Paralysis Association has made him its board chairman, and in 1996 he established the Christopher Reeve Foundation, whose mission is to raise funds for research and to improve the quality of life for the disabled. Last year the foundation distributed $625,000, and the goal this year is double that.
The APA's ultimate aim, like Reeve's own, is a cure for spinal cord injuries. But its executive vice president and director of research, Susan Howley, is guarded about his birthday wish. "It's very difficult to attach any kind of timetable," she says. "I doubt you would find a scientist who would say it would happen by a certain time.
"Recovery will come incrementally," she adds. "I don't think anyone is to be faulted for having very high expectations."
Mary Ellen Cheung, director of the biological sciences program at NIH's National Center for Medical Rehabilitation Research, also is leery of a timetable. "It's difficult to go one-to-one from the rodent models to human beings," she says, "but the state of the science compared to even five years ago is very, very promising."
And if someone she loved were quadriplegic?
"I'd tell my loved one to exercise and take good care of himself. And exercise your mind. Yeah. I think there's every reason to hope."
In other words, do just what Chris Reeve is doing.
On a bad day, the rituals of getting out of bed in the morning and getting into bed at night can consume five hours.
A nurse and her aide appear at 8 a.m. and serve up 20 pills vitamins plus drugs to control spasms, keep his bladder from shrinking and maintain bowel function.
Then comes the real fun: He sleeps in arm and foot splints, and after being in one position all night, his joints and muscles are frozen. His arms and legs go into wild spasms when the splints come off, and it takes the full power of the nurse and the aide to hold them down.
There follows the morning hello from his 5 1/2-year-old son, Will, and an hour or so of "ranging" the slow manipulation of his limbs by a nurse. This prevents atrophy, for as Reeve notes, you can't stand or walk with atrophied leg muscles. After that, he's ready to be dressed. "When two people have to roll you back and forth in order to put on your underpants at age 45, it's a difficult lesson in acceptance," he writes.
"I used to have to control my anger with myself for having ended up in this situation. Often I listen to music or watch TV so I don't have to think about being taken care of like a baby."
Frequently through the day he blows into a little tube that's placed before his face. This causes the chair to shift his weight, helping to prevent the ulcerations that are a constant worry. Right now he's fighting a nasty one on the inside of a buttock cheek.
The nighttime ranging is pleasant after so many hours in the chair, but it is followed by perhaps the hardest part of the day: the "bowel program."
"I'm turned on my side, and the aide pushes on my stomach with his fist in order to force stool down through the intestines and out onto plastic sheets placed under me. Sometimes it can take nearly an hour. . . . It seems like an eternity."
Afterward Dana joins him in his bed for a little quiet time before moving to her own bed beside him. He takes a sedative to control nighttime spasms, and soon enough he's back on his sailboat, battling the sea.
His life now, he acknowledges, is "very much" an act of will.
"On most days it requires a kind of reinvestment in my belief about the future," he says. "And that combined with a certain amount of self-discipline, which I learned from my earliest years in the theater, helps me to keep going.
"Nobody wants another actor. There's too many of them now already. . . . To keep believing in yourself in spite of those kinds of obstacles is certainly good preparation for what I'm going through now."
For a lot of years he made it look easy. He grew up in Princeton, N.J., living with his mother after his parents' early divorce. Young Tophy, as he was known, quietly resolved "to be as perfect as possible," the better to compete with the various half brothers and stepbrothers who came into his life when his parents remarried.
He attended Cornell for three years and then, determined to become a serious classical actor, auditioned for Juilliard. He was nervous beforehand, but "experience had taught me that it's impossible to perform well if you feel like a temporary and unwelcome visitor," he writes. "You need to believe . . . that your time and talent deserve respect."
Pretty self-possessed for a 20-year-old. Juilliard accepted two actors into its advanced program. One was Reeve. The other was Robin Williams, who has been his friend ever since.
A year later he landed the role of a bad boy on the soap opera "Love of Life" the ratings shot up almost immediately and then dropped out of school and began auditioning for plays. In 1975 came his Broadway debut as the second lead of a ridiculous comedy called "A Matter of Gravity," which became a hit because so many people wanted the chance to gaze at its star, Katharine Hepburn.
Then, in 1978, came "Superman." Pauline Kael began her review by saying, "Christopher Reeve . . . is the best reason to see the picture: he's immediately likable, with an open-faced, deadpan style that's just right for a windup hero." Big hit. Welcome to Hollywood.
Soon he was commanding $1 million per picture, quite a bit for the times. Through the early '80s such films as "Superman II," "Deathtrap" and "The Bostonians" were well received, and Reeve returned to Broadway successfully in "Fifth of July."
But in 1987 the fourth and final Superman installment crashed and burned on arrival. It was followed by another bomb, "Switching Channels," with Kathleen Turner and Burt Reynolds. After a decade as a mid-level film deity, Reeve had sunk below the title.
He continued to work in the theater, and by choosing his spots carefully in movies and TV he improved his position over the next few years, most notably with a role in 1993's "Remains of the Day."
He makes most of his money these days from public speaking, but he plans to remain active in film. He directed a highly praised HBO movie, "In the Gloaming," last year, and a couple more directorial opportunities lie before him. He hopes to go before the cameras this summer in an ABC remake of Hitchcock's "Rear Window." (In the 1954 original, James Stewart played a wheelchair-bound photographer who witnesses a murder.)
Reeve is weighing his options for the fall. He may undertake a full-time regimen of body work. The career continues, but the lifework is regeneration.
The door opens and Dana Reeve, murmuring apologies, enters the room. Leaning down, she pats her husband and says, "Al needs to say goodbye."
That would be Alexandra, Reeve's tall, rather elegant 14-year-old daughter, who lives in London with her mother, Gae Exton, and brother, Matthew. (Reeve and Exton split up in 1987.) Alexandra is winding up a visit.
Abruptly, Will races into the room, climbs onto the wheel and gives his dad a kiss.
Mother and son exit, and Reeve asks for a moment's privacy with his daughter. Out in the big, open kitchen, a nurse and staff member are bustling about, and the family's yellow retriever moves from person to person looking for attention. Dana and Will, meanwhile, are talking about what he will wear to visit a friend. Finally she concedes that, okay, the hockey uniform will do.
"You're seeing the underbelly of life here," she jokes as they set out. Her manner suggests that she still finds a good deal to laugh about.
An actress and singer she recently scored a success with an off-Broadway play called "Good Will" Dana, 37, has also become an increasingly public activist. Like Eleanor Roosevelt, she is her husband's legs. A week and a half ago she came to Washington to present Renew America's Christopher Reeve Award for environmental leadership.
"Both Chris and I have been lauded for our reactions to all this," she says later, "which is very gratifying in one sense and bewildering in another. . . . I remember being stunned at the suggestion that I would somehow take off when this happened. . . . I took the marriage vows very seriously, as did Chris. You're there sickness, health I mean, really. And you don't take those vows until you can say it and mean it."
But this isn't what either of them had in mind. "The issues that come up now have less to do with the disability than the things surrounding it," she says. "Specifically, having so many people in our lives. That is the thing that I find most stressful. Not the physical care, or the emotional care, or the things we can no longer do. Those are kind of a bummer, but they don't cause stress.
"Having people in our bedroom in the morning and at night. That's the stuff that wears on me sometimes. But we work it out."
The worst time for her, she says, was right after the accident: "It's such a stark before-and-after the point at which our lives completely changed. . . . It's so painful really, really painful that I only talked about it one time, to give Chris the details for the book. I don't think I can ever recount that again."
It's a little obscene to put it this way, but Reeve's life as a quadriplegic is highly privileged. And he knows it.
In the book he says, "I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles." In person he becomes almost vociferous at the thought that people might believe he's talking about himself.
"The operative word in that sentence is ordinary," he says. "And I have extra ordinary privileges. I have the very best medical care. I have financial resources. I haven't had to sell my house and end up in a nursing home. So that sets me apart from the people I regard as heroes. I truly mean that."
A nurse is on the premises 24 hours a day, which at $40 an hour translates into $300,000-plus annually. (A member of three unions television, film and directors' he has three insurance plans, the first of which runs out this month.) He's put through his paces on more than $100,000 worth of exercise equipment, some of it bought, some donated. Spinal cord researchers keep him apprised of their progress, sometimes far in advance of public announcements. President Clinton takes his calls.
And yet . . . and yet. What an admission price.
It is one thing to have chosen life at all after such devastation. It's a good deal more to work as hard as Reeve does to make that life useful.
"Chris has put a human face on spinal cord injury," says the APA's Howley.
To sit down with Reeve is to wrestle with self-consciousness and pity. To spend time with him is to shake that off: Whatever the science, whatever the future, this is a man who really seems to believe his condition is temporary, and he's doing all he can to make it so.
Of all the losses, which has been the hardest?
"Spontaneity," he says quickly. "Everything takes planning. I can never be alone. . . . Those are exterior things. But then also the real intimacy, the way it used to be with my wife, with my children. I haven't been able to hug Will for three years, and that hurts." Smile. "You know, there are times when a hug from his father would do him a world of good."
There is a vocal segment of the disabled population that would tell him to get used to it. These militants see their condition as something to be celebrated. Speaking of Reeve, one of them recently told the New York Times, "I feel sorry for him because he wants to be cured."
He laughs gently. "And I feel sorry for her because she apparently has given up." Pause. "But I try not to judge people, and I pretty much ignore judgments people make of me. Everybody does what they have to do."
He's right, of course. Everybody does.
© Copyright 1998 The Washington Post Company
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