This is a Quickie P300, the Porsche of sip-and-puff wheelchairs. It has six areas of command. If Reeve wishes to go forward or backward or to the left or the right or fast or slow, he sips air from or blows air into a plastic straw at varying strengths. When he shifts his sitting angle between straight up and laid back, the chair makes the sound of an old European elevator or a convertible top closing.
He appears least mobile when viewed from the rear. Only the top of his head is visible above the black head support, which resembles a boxer's headgear. Below that, a portion of his shoulders shows above the metal ventilator box, which looks like a robot's backpack and is carried behind the chair on a metal shelf. The translucent tracheostomy tube (trach) leads from the box to the slit in his trachea below his Adam's apple. When he speaks, he must catch the ventilator on the outward breath, finish one sentence and get at least a word into the following sentence to signal his listener that he has something more to say.
"You're sitting here fighting depression," he says. "You're in shock. You look out the window, and you can't believe where you are. And the thought that keeps going through your mind is, 'This can't be my life. There's been a mistake.'"
He is usually dressed in a T shirt, chinos and high tops, which, like his hands, are propped up on rests. One notices how clean the sneakers are. His color is good, his hair a thick mixture of old brown and new gray, his eyes true blue. Indeed, his eyes are so alert and intent, his actor's face so distractingly alive, that when one's own eyes rise to meet it, the reality of his condition is obliterated. At these moments one realizes that his mobility has been restricted only from the neck down.
Practically from the day he stopped moving, Reeve has not stopped moving. Thrown from his horse at the third jump during a riding competition in Culpeper, Virginia, on Memorial Day last year, he became a "C1-C2"; the designation refers to a paralyzing injury to the area between the first and second cervical vertebrae, between the neck and the brain stem. It's called the "hangman's injury" because the C1-C2 break is what happens when the trapdoor opens and the noose snaps tight. He says, "It was as if I'd been hanged, cut down and sent to rehab."
After a few months in three hospitals, Reeve came to terms with his altered state. Determined to help both his own cause and that of all the 250,000 paralyzed people in the U.S., he launched a one-man publicity and lobbying campaign, with increasingly effective results.
He has fought on two fronts. One is directed at barring insurance companies from setting lifetime caps on compensation for spinal-cord injuries and catastrophic coverage in general. His own round-the-clock care costs $400,000 a year, which is dispersed among 24-hour-a-day nurses, aides who lift him, expensive drugs and checkups by various specialist physicians. It does not include the capital costs of equipment or of turning his garage into a gym for his therapies.
His insurance cap was $1.2 million, which would be exhausted in three years. He did not want to make a full-time nurse of his wife Dana, who has her own successful career as wife, mother, actress and singer. He makes the point that while he has the resources to engage a team of professional help, most patients do not, and would soon be forced to seek Medicaid. When, early in the year, Vermont Senator James Jeffords sought Reeve's support for an amendment to the Kennedy-Kassebaum health bill affecting the portability of insurance if an employee moved from one job to another, he gladly signed on and sent a supporting letter to every U.S. Senator. For extraneous political reasons, the amendment was defeated, but narrowly, and its passage the next time around appears to be assured.
Mainly he has worked to raise money for spinal-cord research. Relatively little money has been spent on spinal-cord research because the small number of patients (around 11,000 a year) does not excite pharmaceutical companies. And the therapies may not involve drugs anyway. Few Nobel Prizes have gone to this research, and scientists have not been drawn to it. Yet, Reeve notes, spinal-cord research aids related diseases such as multiple sclerosis, Parkinson's disease, Alzheimer's, Lou Gehrig's disease and stroke.
Apart from the humane considerations, he argues, an investment in research would save the country billions of dollars. Spinal-cord injuries cost $8 billion a year in treatments; Alzheimer's, $90 billion. "I'm sitting listening to the budget debate," he says. "A lot of it is over Medicare. And I'm thinking that the way to save the Medicare-Medicaid issue, the way to turn it around, instead of talking about cuts, is to talk about research and the efficacy of research. Because you won't have to pay to maintain injured people. We get things done in this country based on incentives, not just the goodness of our hearts."
In September he appeared on television with Barbara Walters and made his first public appeal for research funds. Walters conducted a remarkably thoughtful interview, equally touching and restrained. Reeve said that on his 50th birthday he would like to stand and raise a glass to all who helped him. He is now 43. The audience response was overwhelming. Shortly afterward he made a similar appeal on the Today show, on which Katie Couric conducted a careful five-day-long series on the subject.
In January, Joan Irvine Smith, a California philanthropist and horsewoman who was impressed by Reeve's energy and by the fact that he never blamed his horse for the injury, donated $1 million for the establishment of the Reeve-Irvine Center for spinal-cord research at the University of California at Irvine; the state will match her million. She also established $50,000 prize for the neuroscientist who made the greatest progress in a given year. In February, Reeve did the Larry King Live show, making an explicit appeal for donations for the American Paralysis Association--another considerable success. The following month he took part in the dedication ceremony for a new $18 million rehabilitation unit at the St. Francis Health Care Center in Green Springs, Ohio.
In May, Reeve went to Washington to lobby directly for research funds. He met with President Clinton and secured his promise to add $10 million to the National Institutes of Health (NIH) research money; Pennsylvania's Arlen Specter of the Senate subcommittee on Labor, Health and Human Services offered to add $40 million more. Soon after, as the new a.p.a. chairman, he flew to Puerto Rico and helped raise $600,000 at a benefit. Last week he was host of the Paralympics in Atlanta. Next week he addresses the Democratic National Convention with a nonpartisan appeal for research support.
"When John Kennedy promised that by the end of the 1960s we would put a man on the moon," he says, "everybody, including the scientists, shook their heads in dismay. But we did it. We can cure spinal-cord injuries too, if there's the will. What was possible in outer space is possible in inner space."
All this forward motion comes naturally to Reeve, whose task-oriented and detail-oriented nature was heretofore applied to such activities as flying, sailing, scuba diving and horseback riding as well as working for such causes as the environment, children's issues, human rights and the National Endowment for the Arts. His success as an actor was a result of concentration and diligence as much as good looks. "I'm not a naturally gifted actor," he says. "Acting was a long process for me." He adds, "I was just getting the hang of it."
From the age of 13, he devoted himself to theater--beginning at the McCarter Theater in Princeton, New Jersey, where he would go after school to play any part they would give a kid. McCarter, he says, became his family. He had lost the security of his real family: his parents divorced when he was three and his brother Ben a year younger. His father is the poet and literary scholar Franklin (F.D.) Reeve. His mother Barbara Pitney Lamb remarried, a stockbroker, Tristan Johnson, who was a kind and generous stepfather to Reeve and had four children from a previous marriage. Then the Johnsons had two children of their own. F.D. Reeve also remarried, adding three more children. In the separate civilizations of the burgeoning new families--one in Connecticut, one in Princeton--the one stable place in Reeve's life became the theater. "It was all just bits and pieces," he says. "You don't want to risk getting involved with people for fear that things are going to fall apart. That's why I found relief in playing characters. You knew where you were in fiction. You knew where you stood."
He was accepted at 15 by the Williamstown (Massachusetts) Theater Festival, to which he has returned virtually every summer since, in spite of his film career. (He has a home in Williamstown as well as in Bedford Hills, New York, both perched on hills with picture-book views.) After graduating from Cornell in 1974, he studied acting at Juilliard with John Houseman. He made his first Broadway appearance with Katharine Hepburn in A Matter of Gravity, an odd play in which he received quite good notices. In 1978 came the movie Superman; he initially thought the role so silly, so beneath theater, that he almost skipped the tryout. Characteristically, he wanted to work hard to do the part right. On the set he approached the veteran Gene Hackman, who was playing Superman's comic-villain archenemy, and asked if he wanted to rehearse. "Not really," said Hackman. Reeve asked, "Mr. Hackman, what was it that attracted you to the role of Lex Luthor?" Hackman answered, "You mean besides the $2 million?"
In all the ventures that followed, Reeve brought the earnest student's desire to learn and a self-described and often self-lamented perfectionism. It is hard to tell whether his approach to things is a product of what he concedes to be a "control-freak" tendency or of a genuine, deep-seated fear that most things are bound to go wrong. At the same time he has a determined sense--nearly grim in its seriousness--that whatever is wrong can, with discipline, be made right. The accident has not changed this basic attitude, though the nature of his injury is too serious for him to pretend that a cure is merely another skill to be learned.
He lives between the acceptance of the reality of his condition and the expectation of changing it. He goads the politicians to help the scientists. He goads the scientists to make him and others well. He exercises and prepares his limbs for the day when a cure might be administered. And he waits.
At night he dreams that he is whole again. He is sailing with Dana. He is playing with his children. He is flying an airplane. He is acting. He is even riding again. In the morning he tries to feel the body that was alive in his dream.
"It's all well and good to speak of having a positive attitude with something like this," he says. "But the more I learn about what is necessary to put me back together, the less I feel that strength and determination are deciding factors. This is a medical problem. You're talking about nerves that have been pulled apart."
When the spinal cord suffers a blow, vertebrae are compressed, and if the force is great enough, fractured. The sheer force of the blow kills some nerves instantly. Then the compression causes electrical impulses traveling through nerve cells in the area to go haywire, and the overload causes many neurons to kill themselves. The dying nerve cells leak calcium, which attracts enzymes to the area that chew on the tissues. The by-products are free radicals, unstable compounds that scavenge oxygen from healthy cells, often destroying them. As these cells die, they trigger a secondary wave of destruction that sweeps from the injured area and radiates outward. Blood flow to the central nervous system is slowed, immune cells flood the area and, in a frenzied attempt to clear away the debris, begin to chew up damaged and healthy nerves alike.
The result is gaping holes in the spinal cord. Long nerve fibers, or axons, that originate in the brain and weave down the spinal cord, eventually connecting with other nerves that branch to muscles as distant as the toes, are torn and stripped of their protective fatty coat of myelin. The myelin sheath is like the rubber coating on electrical wire. Without it, the nerves cannot function.
"The central nervous system does not regenerate the way the peripheral system does," Reeve says. "Someone chops off your arm, and it can be reattached. You might even pitch a baseball someday. But evolution did not do the same thing for the central nervous system. It was explained to me that if the central nervous system of an animal were to regenerate, the animal would not have the speed and agility it once had, and would thus be easy prey. It is better for the animal to just die. Evolution decided that it's better not even to try." The challenge for medical science in finding a cure is that the body must be made to do what it was not made to do.
Reeve often speaks of the accident as a "failure," an instant of "humiliation and embarrassment." He says, "I used to worry when I was making Superman that I'd mess up. You know: SUPERMAN HIT BY BUS. That in a headline." He is inclined to be hard on himself. "In the first days," he says, "I kept thinking, 'I've ruined my life.' But you only get one. You can't say, 'I've spoiled this one. Can I have another, please?' You feel as though you're a creature from another planet. Because here on earth people walk around and breathe on their own. But where I come from, people are on a hose, and they sit in chairs and they don't stand up."
But then his mood changes, and the normally purposeful attitude reasserts itself. "All that self-pity comes in the beginning. And it does recur. But what you begin to say to yourself, instead of 'What life do I have?' is 'What life can I build?' And the answer, surprisingly, is, 'More than you think.'"
Like so many spinal-cord injuries, Reeve's resulted from a fluke accident. Originally, he was not even headed for the riding event in Culpeper; he had signed up to enter an event in Vermont when friends persuaded him to change his plans. After Vermont, he had intended to go to Ireland to make the TV mini-series Kidnapped, produced by Francis Ford Coppola. He just thought he would do one more event on his new horse, Eastern Express, called Buck, a 12-year-old American Thoroughbred gelding.
He arrived on Friday in time to practice in the afternoon, and went to walk the course for the cross-country event. Walking the course means going on foot from jump to jump to check out striding, footing, quirks in the fences, the unevenness of the ground, and shadows. Experienced riders walk the course twice. Reeve always did it three or four times. "The last thing I remember is that on Saturday morning I went out and walked the course again," he says. "I finished suiting up, got Buck out of his stall, rechecked the girth, hopped onboard and headed out for the warm-up area. The next thing I remember was Wednesday afternoon in the hospital at the University of Virginia."
What evidently happened was that at the third jump, Buck simply stopped. Up to that point, according to the judges and observers of Reeve's progress on the course, everything was going fine. It was an easy, fairly low jump. Reeve was heading toward it at full tilt, about 500 yds. per min. But then "Buck just put on the brakes," says Reeve. "Later the fence judge told me that there was nothing whatever to indicate that the horse was worried about the jump. Someone suggested that a rabbit ran out and spooked Buck. I thought it could have been the shadows." It was what riders call a "dirty stop"; it occurred without warning. When he went over, he took the bridle off Buck's face. "I mean, the bridle, the bit, the reins, everything. I went over his ears like a football through the goalposts and ended up on the other side of the jump. Buck went back to the barn with no bridle. And I landed straight on my head because my hands were entangled in the bridle and I couldn't get an arm free to stop my fall. Had I done that, I'd be looking at a sprained wrist. I was heard to say, 'I can't breathe.' And that was it."
Somebody had the presence of mind to give Reeve mouth-to-mouth resuscitation, and the paramedics arrived about a minute later. They intubated him and took a long and careful time to put him on a stretcher, attempting to prevent further injury to his spine. He was taken to the Culpeper Medical Center, a small medical facility that was nearly empty that weekend. Dana and Will, his three-year-old son who was along for the trip, were summoned, Dana not yet informed of the extent of the injury, Will not understanding what had happened except that something was terribly wrong. Doctors at Culpeper gave Reeve methylprednisolone (MP), a synthetic steroid that reduces the swelling of the spine and must be administered within eight hours of an injury. That was all they could do at Culpeper. At the hospital, Dana was told that he had no better than a 50% chance of making it. He was flown to the U.Va. hospital by Pegasus, the university's medevac helicopter service.
Methylprednisolone is a major advance in the spinal-cord research for which Reeve is now seeking support. An NIH-supported study showed that if MP was given within eight hours of a spinal-cord injury, a patient could save about 20% more neurons than if the drug was not used. For some, this 20% could mean the difference between breathing on their own and having to use a ventilator. Doctors speculate that at high doses, MP no longer acts as a steroid but instead inhibits the breakdown of fats into the dangerous free radicals that are like acid to cell tissues. For basic activities such as breathing, controlling bowel and bladder movements and moving the arms and legs, a person may need only 8% to 10% of the estimated 800,000 spinal-cord nerves. "It's a source of great hope," says New York University's Dr. Wise Young, a distinguished researcher in the field, who is now working with Reeve. "It means that you don't have to preserve, restore and regenerate so many axons in order to get functional recovery."
At U.Va., Reeve came under the care of a noted neurosurgeon and teacher of neurosurgeons, John Jane, who would operate on Reeve himself. Before that, however, Reeve needed to be stabilized to prevent any more compression in the spine. He was placed on a bed with a kind of halo attached to his head and a heavy weight that kept him immobile. He was given morphine. Sometimes he would attempt to flail and would jerk his head from side to side, and more sedation would be necessary.
"When they told me what my condition was, I felt that I was no longer a human being," he says. "Then Dana came into my room and knelt down to the level of my bed. We made eye contact. I said, 'Maybe this isn't worth it. Maybe I should just check out.' And she was crying, and she said, 'But you're still you, and I love you.' And that saved my life."
Now they had to wait for his lungs to clear. The bottom part of both lungs had begun to fill with fluid. In the past, doctors had no way of removing that fluid, and the patient would die of pneumonia. "They clear the lungs through repeated suctioning," says Reeve. "They stick a tube right down into your lungs and pull out the liquid. You can't feel down to your lungs, but you can feel the tube go down your throat."
At one point when the sedation wore off he extubated himself by pushing the breathing straw out with his tongue. He tried to say something to Dana. Alarms went off. Nurses ran in to wrestle his head back down.
Few operations are as perilous as dealing with a C1-C2 injury. Sprouting from the spinal cord are 31 pairs of nerves. Closest to the brain are the eight cervical nerves, which process information received from the neck, shoulders, arms and hands. When Reeve was thrown from his horse, he could move only his head. (Most head-turning muscles are controlled by nerves emerging from the brain, not the spinal cord.) Now, a year later, he is able to shrug his shoulders and breathe on his own for lengthening periods of time, which means that his first, second, third and fourth cervical nerves have begun to function again.
Dr. Jane was working within 1/16 of an inch of the brain stem. He placed a wire under both lamina--the bony covering of the spinal cord. He took bone from Reeve's hip and squeezed it down to get a solid fit between the C1 and C2. Then he put in a titanium pin the shape of a tiny croquet wicket and fused the sublaminal wire with the first and second vertebrae. Finally, he drilled holes in Reeve's skull and passed the wires through to get a solid fusion.
What Jane did was put Reeve's head back on his body. After the operation Reeve told him, "I want to thank you for giving me my life." Jane was in tears when he left the room.
At first Reeve was told that he was a "C1 incomplete," which means that the spinal cord was still intact and that there was room for improvement, perhaps to the level of a C4, which would allow movement in his arms. Then he was told that he was a "C2 complete," which indicated no potential for improvement. A "complete" means that the spinal cord has been transsected, severed or so badly damaged that it can never be repaired. Fortunately, the first diagnosis was correct.
Reeve remained in intensive care at U.Va. for a month. Then he went to the Kessler Institute for Rehabilitation in West Orange, New Jersey, where his therapy began. "I still had an infection in my lungs," he says. "I couldn't eat very much. I'd lost a lot of weight. I dropped from 215 to about 190. My hemoglobin, which should be around 13 or 14, was down to 9. My protein levels were low. I looked gaunt. I was too fragile for rehab yet."
He began to become a student of his own disability. He started to keep track of his numbers--the various counts and levels that monitor his condition. "They would tell me these numbers as a way to motivate me," he says, "because I'm competitive. If you tell me that I'm a 2.7 and I should be at a 4.0, I'll try to do something about that."
At Kessler he began to accept the fact that he was going to spend a long time in an institution. Because of his celebrity, he was given a single room, for which he was grateful, but it made him feel isolated from the other patients. Two security guards were posted outside. Reeve's first "pop-off" occurred in that room. A pop-off happens when the trach is not secure. Unless one is used to breathing off the vent, breathing is impossible.
"It came off in the evening. The alarm is sounding on my vent, and I'm making this clicking noise with my throat--clk, clk, clk--and the security guy comes in and asks, 'Are you all right, Mr. Reeve?' The vent is screaming, and I'm clicking. All he needed to do was put the hose back in place, but I guess his instructions were that his job was security, so he goes off to get a nurse. Now I've missed maybe four, five, six breaths. You don't feel pain when this happens; you feel panic. I only felt a tingling in my knees. I thrashed around. I wanted air. I was like a tuna fish landed in a boat, rolling around with the hook still in my mouth.
"After the nurse came in and fixed me up, I made a joke that from now on I would always check the footwear of the nurses to make sure they were wearing sneakers. I wouldn't want them to slip and fall on the way to the rescue. But the first time... trying to point with my head where the pop-off was...the feeling of helplessness. I've never been helpless."
Pop-offs did not become routine, but eventually he lost the sense of panic when they occurred. Everything new that was part of his treatment came with its own attendant fear, which was enlarged by his imagination. He was learning one of the penalties of living solely in one's thoughts. Merely the idea of being put in the shower terrified him. "I thought, 'What if something happens to the vent in the shower?' 'What if the water gets into the trach tube?' And so on. To get you into the shower, they've got a kind of hammock to which they transfer you from the bed, and you're lying there in a kind of net. I was afraid of being rocked as they moved me. I was afraid of the water getting over me. I don't know what my fear was, but I seemed so vulnerable, like going on this huge, terrifying adventure."
The wheelchair itself terrified him. "When I was first put into it, for some reason I panicked. I was sitting back in this chair, and I felt, 'I can't be here. I can't do this. Get me out. I can't. I don't trust it.' My arms were strapped down, the way they are now. A seat belt was put on me. My legs were strapped onto foot pedals. It was like being put in an electric chair."
Eventually these reactions became obstacles to overcome. He came under the care of Dr. Steven Kirshblum, director of the Spinal Cord Injury and Ventilator program at Kessler, in whom he developed trust. But he had good reason for those early states of panic. A week after arriving at Kessler, he was injected with a dose of Sygen, which is currently being studied for use in acute spinal-cord injuries. Immediately he started wheezing. Within minutes he developed a severe allergic reaction; his lungs could not accept air. His heart rate was going up as his blood pressure was going down; at one point it was about 40 over 20. He sucked in for air, and none was coming. It was as if he were drowning.
"There was a kind of controlled pandemonium in my room," he says. "I felt the way you do when you've been diving too deep and you think you're not going to make it to the surface. Then words formed in my head. Maybe I spoke them aloud. I don't know. But I said, 'I'm sorry, but I have to go now.' Again I felt that need to apologize. I felt embarrassed for having failed, for not having been able to win the struggle. But then my great Dr. Kirshblum came in, and I was given a massive dose of epinephrine, and it jump-started my heart. Suddenly, with a jolt, my heart was pounding, pounding, pounding. My face was pounding. My pulse was in my face. I took in gulps of air. And within a few minutes I was back. That was the second time I'd almost died, and that was enough."
Slowly, determinedly, Reeves began to take control of his condition. His confidence began to grow. Dana remained tireless in her attention to him. Will cheered him up as he clamored over his father's chair. Matthew and Alexandra, his two children from a long relationship in England with Gae Exton, flew over to be with him, as did Exton. He grew close to his nurses, especially a man nicknamed Juice--"my beloved Juice"--who was devoted to him. Juice had a joyous nature and was exceptionally strong. "When he would grip me," says Reeve, "and I'd lean forward on his shoulder, I felt that nothing could possibly go wrong."
A wound in his sacral area, called a decubitus, began to open. It went so deep, it opened to the bone: "You could go put your hand inside it." His doctors wanted to operate, which would have required grafting skin to the wound, but he asked them not to. He had to agree to stay in bed for eight days without moving. The view he had out his window was of a brick wall. He could see only the wall, but he imagined that above the wall was a roof, and above that a clean sky. "I had this fantasy about climbing the brick wall, then up the roof, then a running start and away."
So it went at Kessler. Some days fear, some peace, some resentment. He had started out at Kessler "with a kind of arrogance and denial," but then began to accept the institute as the locus of his recovery. A nurse named Patty forced him to read a manual on spinal-cord injuries (he had refused at first). He read about the effect of paralysis on respiratory problems, on bowels. He read about sexual activity. He read about the dangers to which he was prone, like dysreflexia, a condition most commonly resulting from a clogged bowel or urinary tract, which the patient cannot feel until too late and which can lead to high blood pressure, heart attack or stroke.
After first wishing to avert his eyes from the population of the disabled, of which he was now a part, he gradually came to accept what was before him. He got rid of his security guards. "I started wheeling into other people's rooms and talking with them. We realized we were no different from one another. Some very nice friendships developed." From time to time, he goes back to Kessler to visit with the people he met there.
He undertook physical therapy with others in a stale-smelling large room. "It was filled with people dealing with their handicaps," he recalls. "The room of sweat, struggle, hope and disappointment," where patients like himself were exercised on blue mats under glaring fluorescent lights in eggbox cases. They were continually shouted at to "do another, try harder, give it another five."
He would be positioned on his side, and would try to move his shoulders. One of the trapezius muscles in his right shoulder could flicker a little. Nothing else. "It would take time for my brain to connect to what muscle to move. I'd have to think, 'My brain to my right shoulder. All right. Let's go. One, two, three.' I learned to will it."
There would be days of no progress or of regression. The worst days had to do with getting off the ventilator. At U.Va. they predicted that he would be able to breathe on his own. They gave him a test called NIF--negative inspiratory force--which measures the effort of the muscles as they try to take in air. He could not move the dial. He thought, "What's wrong with me?" After a long while of trying, he gave up, and the therapists let him. "What they're trying to do," he says, "is get you to take responsibility for your own progress." Then he tried again, took 10 breaths on his own and moved the dial. "I finally said, 'Damn, I'm going to breathe. I've got to make some progress here."
Every day he got a little stronger. "I was sucking for air, my eyes were going up in my head, but eventually I breathed on my own--for 7 1/2 minutes"; 7 1/2 rose to 12, to 15, to 30. Today he can go off the vent for hours.
Now he began to move his mind in the direction of finding a cure. He had been surprised by the hundreds of thousands of letters he had received from well-wishers, from strangers who admired him. He began to understand something about the special character of his celebrity. Though Reeve has made several "serious" movies like The Remains of the Day, it was his awkwardly charming portrayal of Superman, especially in the first two of the four-movie series, that endeared him to a vast public. He knew that the role of Superman had a resonance, and he knew further that each era in which it is depicted on television or in film requires a different conception of the character.
Reeve had deliberately played the part in imitation of Cary Grant in Bringing Up Baby--the handsome bumbler, shy in the presence of a self-assured woman but clearly a superior being. He was the Superman who had landed in time for post-Vietnam, pro-tenderness and sensitive America. (In the first of the series Superman introduces himself to Lois Lane as "a friend.") Not only to America but to much of the world, this was Chris Reeve. If anything, his injury had enlarged his celebrity. He began to see that he could use this affection, for which he was grateful on personal grounds, to lead a movement.
"No one was writing to me and saying specifically, 'You could lead the charge on spinal-cord and central-nervous-system disorders," he says, "but hearing from certain important people gave me the idea. Senator Bob Kerrey of Nebraska wrote me a very telling letter. I heard from Paul Simon and Pat Leahy. I heard from President Clinton a couple of times. I had developed relationships with these people over the years when I was working for environmental issues and for the Arts Endowment. I realized that those relationships were in place and could be useful when the time came to do something for spinal cords."
He was visited in Kessler by Wise Young and by Arthur Ullian, who is paralyzed from the waist down as the result of a bicycle accident and who has been lobbying Congress for years. Ullian was the first to impress upon Reeve the unique role that he could play. At the same time Reeve was contacted by Henry Stifel, chairman of the American Paralysis Association, to which Reeve was drawn because "they are dedicated solely to finding a cure for paralysis, nothing less. I liked that ideal. They're not into lower sidewalks and better wheelchairs."
Every television show wanted an interview, and Reeve decided to use the media to further his cause. In his appearances, he evoked a clock ticking toward his 50th birthday. "I thought I had to put a human face on a condition that the scientists were not really able to dramatize. You have to move politically, but you also have to reach the people's hearts." He developed the economic argument as well. Spinal-cord injuries occur mainly to young people. Many are kids shot in gang wars or in drive-by shootings. There is also a preponderance of mishaps in sports. One reason billions are spent on the care of spinal-cord injuries is that the injured people live a long time.
In short, he has become the most recognized person in a wheelchair ever--even more familiar than Franklin Roosevelt, who concealed his chair from public view. Reeve did not want to become the poster boy for America's quadriplegics. He wanted to be a symbol of potential recovery. "People like me sometimes complain, 'When you say I'm in a wheelchair, you imply that there's something wrong with me.' Well, there is. My response is that we're entitled to something more in life."
He says, "Juice would always tell me, 'You've been to the grave two times this year, brother. You're not going there again. You are here for a reason.' And my answer was, no, I wasn't injured for a reason. It was an accident, it just happened. But now I have the opportunity to make sense out of it. I believe it's what you do after a disaster that gives it meaning."
However quiet and hidden it may have been, a good deal of progress has been made in the treatment of spinal-cord injuries, and Reeve's injury is coincidental with the period of greatest progress in the research. A few years ago, researchers knew only that it was necessary to preserve as many nerves as possible in the early stages of an injury. They believed that whatever nerves were lost were lost permanently. Now, says Young, they are talking about working with a much greater number of cells because they are convinced that axons can and will grow. This understanding has raised the research to a new level. Treatment now centers on three approaches: preserving the intact neurons; restoring the surviving ones to best use their function; and--most difficult and most promisingly--regenerating new neural connections.
To preserve the neurons, researchers have to catch them before decay. Stroke research has shown scientists which nerve chemicals flood in to kill nerve cells after a trauma, and they now have one drug to block the process and others on the way. Dr. Dennis Choi at Washington University in St. Louis, Missouri, studies nerve death in stroke victims. He says, "While we can't do very much about neurons that die because they are mechanically destroyed by the impact, we can do quite a bit to prevent cells from dying in the ripple effect. We have a good sense of the cascade that destroys nerves after impact, and there is a lot of commonality between the brain and the spinal cord in this respect. Many of the same approaches that work in the brain work in the spinal cord."
At Young's center at N.Y.U., other drug treatments for the early stages of spinal cord-injury are being investigated. The goal is to block the destructive secondary effects that destroy nerve fibers and sever their connections to muscle. The most promising approaches to date include blocking the receptors on cells for the neurotransmitter glutamate, a chemical that conducts nerve messages. Excess glutamate is toxic to cells; the overexcited neurons eventually short-circuit because of the overload. Once nerve cells begin to die, they trigger the destructive cascade that Choi refers to, often destroying healthy as well as damaged cells. Another approach is to clamp down on the calcium flood that accompanies dying nerve cells by protecting the cells with chemical blockers that reject calcium. Many of these approaches are being tested in stroke patients, and if they can protect the nerves in the brain after a stroke, they will be tested on spinal-cord-injury patients.
In the second area of approach--getting damaged nerves to work again--the researchers' focus is on restoring connections that are intact after an injury but for some reason no longer work. This is where the problem of remyelination comes in. Studies of multiple sclerosis patients have proved useful; MS is an autoimmune disorder in which immune cells strip the spinal-cord nerves of their myelin. Decades ago, MS researchers began testing a derivative of coal tar, 4-aminopyridine (4-AP), to help MS patients gain as much use of their existing nerves as possible. The benefit of 4-AP in paralysis studies came when research with animals showed that a lack of myelin was significant in loss of muscle control. Paralyzed animals given intravenous 4-AP were not necessarily able to walk, but they showed regained muscle reflexes.
Since 1990, about 100 paralyzed patients have been given 4-AP in clinical trials, and about one-third of them have regained some function. Keith Hayes, a neuroscientist at the University of Western Ontario in London, Canada, who has been involved in the trials, says, "We have seen improvements in sensation and motor function, reduced spasticity and reduced pain, and improvement in bowel, bladder and sexual functions." MS researchers may come up with yet another useful therapy for spinal-cord injuries. At the Mayo Clinic in Rochester, Minnesota, Dr. Moses Rodriguez is testing the use of antibodies as catalysts for the making of myelin in MS patients. Antibodies with a low affinity for myelin-producing cells in the central nervous system may stimulate these cells to divide and develop. Thus, Rodriguez argues, paralysis patients may prompt their own bodies to produce the myelin their axons need.
Of course, it is the third area of approach, the regeneration of cells, that gets researchers and patients most excited. Young remains both cautious and optimistic: "When you're tinkering with the growth of things in the central nervous system, you're playing with the very nature of the beast," he says. "It may take four to five years before a regenerative therapy goes to clinical trial."
Until the mid-1980s, researchers assumed that nerves in the central system were simply incapable of regrowth once they were damaged. A researcher at McGill University in Montreal, Alberto Aguayo, turned this assumption around by demonstrating that a nerve taken from an animal's leg and grafted onto the central nervous system allowed the nerve cells to grow along the transplanted nerve. Evidently there was nothing wrong with spinal-cord nerves, but something in the central nervous system was impeding their growth.
Since then, scientists have refocused their attention on nerve-growth factors, first identified in 1951 by Rita Levi-Montalcini of Washington University in St. Louis, who studied neural development in chick embryos. The ngf protein is present in the peripheral nervous system, but cells in the central system do not normally respond to it. Researchers are investigating ways to use ngf and proteins like it to encourage new axonal growth from the spinal cord. ngf injected into the spinal cords of rats revived connections from the spinal cord to the brain, but it remains uncertain whether more or less ngf is better for nerve growth.
Other potentially useful substances include the fibroblast growth factor, which is found in nearly all tissues and aids in the healing of wounds; and gangliosides, which appear on the surface of cells and may protect and promote the growth of axons.
At the Miami Project to Cure Paralysis, another major center for research, the focus is not so much on coming up with the perfect formula to promote the growth of cells as on transplanting the peripheral cells to a hospitable environment in the central nervous system. "The question," says Mary Bartlett Bunge, a cell biologist and half of the husband-wife team that oversees the project's research group, "is how to get the adequate amount of regeneration for the adequate length so that the fibers can get to their appropriate target."
Miami's researchers cut a small section of spinal cord from rats and constructed a tiny "bridge," which looks like a drinking straw filled with cables of cells immersed in growth factors. They placed this bridge in the rats that were missing a section of spinal cord and found that axons began growing into the graft. The next step will be to treat the rats with more nerve growth and protective factors before grafting the straw, to see if the nerves will venture out of the graft to connect with other nerves and eventually reach muscles and glands.
At the Weizmann Institute in Israel, Michal Schwartz has been working with compounds taken from fish brains. Her approach is to culture them and inject them into the site of the lesion, bridge the gap across the scar tissues and make a new connection. Schwartz has visited Reeve, and is in touch with him regularly.
So the progress went until two months ago, when a group of researchers at the Karolinska Institute in Stockholm succeeded for the first time in helping spinal-cord-injured rats to move. The rats' cords had been completely severed, yet after a bridge transplantation similar to those in the Miami experiments, across a gap of about one-fifth of an inch, they started to flex their hind legs. A year after the surgery, the rats could support their weight and move their legs.
Young, who wrote an editorial in the journal Science to accompany and support the study, notes that the Stockholm technique will not be of immediate use to humans because very few spinal-cord injuries result in totally severed cords. In most cases there is an injury but no gap to bridge. "The bridging technique," he says, "is a proof of concept, an alternative technology that ought to be used if we need to build a bridge. What I think the study should do is to quell some skeptics. We have said that the spinal cord can regenerate... This study is a milestone in showing that something that had been regarded as impossible is possible."
One sidelight of the Stockholm story is that it made front-page news in this country and elsewhere and was a feature item on television news programs. It is doubtful that would have happened before Reeve brought the cause to national and international attention. After the Stockholm success, he smiled and looked eager. "If that's what they're doing over there," he said, "bring me to them. I'm a rat."
While researchers still have nothing tangible to give people like Reeve, they are certain that in addition to MP and 4-AP, therapies are imminent. They do not predict that patients will be running the 100, but they do believe patients will be able to feed themselves, use the bathroom on their own and lead fairly independent lives. Interestingly, Young says there is little evidence to suggest that the longer paralysis lasts, the worse are the chances of recovering some function. "It's important that patients not allow their muscles to atrophy," says Young. "I usually tell people that we have nothing yet to give you, but if I were you I'd start an exercise program to keep my body in good shape so that when the therapies come, I'll be ready."
This is exactly what Reeve is doing. His therapy routine consists of a combination of what is done for him and what he can do for himself. "Usually I don't fall asleep till well after midnight," he says. "I have to be turned every three or four hours during the night to prevent the skin from breaking down. If the nurses are gentle enough, I won't wake up. I have to sleep at a 90[degree] angle on my side. If I were lying on my back, the weight of my body could create another decubitus wound, and I don't want to go through that again.
"Sometimes I'll spasm while they turn me. The effect of a spasm, the tension of it, goes straight to my neck. It stiffens like a tree trunk. If I'm awake, I'll ask the nurse to give me a soft-tissue massage, which goes deep into the muscles. I have to take about 12 kinds of pills plus Metamucil. Pills to help control the spasms. Pills to prevent infection in the stool. And so on."
Then the ranging begins. Ranging is when the nurse stretches out his arms, legs and fingers to retain their flexibility and elasticity. Often his limbs will fight against the exercise. His hands will quiver, his legs will shake. "The nurse will take my leg out to one side," he says. "He's fighting to hold the knee down and the foot up. Then he'll bring it back to the middle and fight to bring my knee up to my chest. My whole leg is fighting, the foot flapping. But he holds on. You can hear the joints crunch.
"It's like watching someone else's body. Like it has nothing to do with me. But I look to see how the muscle tone is doing because we work very hard on that. My legs are really getting strong, particularly the thigh and calf. The nurse will hold the leg straight up, holding the knee with one hand and the foot with the other and pushing with all his body weight. I can't feel anything in the right leg; I just stare at it. But I feel the tension in the left."
When the nurses range his arms, he can feel a light touch from the hand up to the elbow, "as if someone were to brush a hand along the area, a kind of caress. And I can feel something in my shoulder blades."
As he is being ranged, he looks out the window--"down to the pond that we share with our neighbors. Goats are there, and sheep, and there are guinea hens running around. I see the old farmhouse that dates from the late 18th century. I see the lovely white fences along our driveway. And beyond to the hills. I can look at the view for hours and never get tired of it. That's something I've learned to do since the injury--to look at things for long periods of time."
Splint boots are placed on him at night and removed in the morning. They are made of a solid piece of strong plastic and are wrapped around each foot to prevent what is called foot drop. If Reeve did not have that support, his feet would eventually droop; this keeps them at a normal angle. His wrists and fingers have splints on them every night for the same purpose.
He wears only a T shirt to sleep, so the nurses can dress and undress the wound on his backside and so they can do "the bowel program." He jokes that the bowel program, like a TV show, is on every night. "The reason we have to do it in bed is that the people who made my commode chair put the seat on sideways, and when I tried using it that way, it made my decubitus wound much worse. So one of my humiliations is that my bed is also a bathroom. You're given a suppository and what is called a dig-stim, for digital stimulation, which means that a nurse literally puts her finger up in there to make it come out. If that doesn't work, they give you a Fleet enema. I go through that every night.
"Anyway, after the ranging comes the physical therapy. We do something called E-stim. They put me in a pair of bicycle pants like the racers wear, which have electrodes in various parts. Then they place me on a bike, an exercise machine called the Stimaster. The machine puts out 50 volts of current, and it makes me move my muscles, causing contractions and extensions from the ankles all the way up to the butt muscles. I started out only being able to tolerate 10 minutes at a time. Now I'm up to an hour. We're building up strength in the calves, the quads and the thighs."
After that, Reeve is put through neck exercises--sort of neck pushups, with the head lifting up and down and the nurse holding it to provide resistance. Each exercise entails 50 repetitions. Then he rotates his head from side to side, and again the nurse resists. He does chin tucks and shoulder shrugs, in which he exercises what little movement he has in his shoulders; he raises them as high as he can, then brings them down again, also 50 times. He does a similar exercise of the scapula muscles, below the shoulder blades.
"Having a nurse do everything for you is hard," he says. "I feel I'm always imposing. I find myself saying 'I'm sorry.' I've got dry skin, and I'll often say, 'Could you take a towel and just vigorously scrub my face? I'm sorry.' Or, 'I'm sorry, but my nose is running.' But everybody's willing to help. I used to have a hard time asking. I'm better about it now. But the more I can do for myself, the better I feel."
He has to be "coughed" at intervals as well. Coughing gets rid of the mucus in his respiratory system--in his throat or sometimes deep in his lungs. A nurse holds a coughalator to his throat, which functions like a vacuum cleaner. When she removes the tubing to the ventilator, it sets off a high-pitched alarm, as in a pop-off. Then she puts in inhalers to help Reeve's lungs open and breathe.
Later in the day a respiratory therapist comes, and Reeve goes through his nif training. He exhales off the vent. Then the therapist tests his vital capacity. "You let out all the air, and this time the trach is open and you breathe in. And you breathe and breathe and breathe and take in as much as you can and then let it out. Some people blow it out forcefully and get good numbers that way. I just relax everything, and the air comes out 'cause obviously whatever came in has to come out. When I left Kessler in December, my vital capacity was about 75. Meaning I could take in 75 cc of air, which is about what a canary breathes in. The last measurement was 860 cc. A condor. Now, an animal my size requires 1,200 cc of air to wean, to get off the vent and really breathe independently. So I go off for periods of time building up to that. I'm hoping to get to that number. For your grandmother, 750 cc would be plenty; she'd be very happy with that. But I'm huge, and I need all that air.
"One of the things I like to do is to breathe for 30 minutes with the resister set on level 3. So imagine you're breathing through a straw, but somebody basically has their finger on the other end and just takes it off a little bit to let some air in. And this works the chest and the diaphragm. So I do it a minute on, a minute off, a minute on, a minute off, for 30 minutes.
"But then, for an experiment, I recently said to the nurse, 'This thing goes up to level 5. So I cranked it up to 5, started sucking on this thing, and it was like I thought I was going to implode from the effort. But I was having a really strong day, and a minute went by, and my sats [oxygen saturation levels], which should not go below 88, were still 95. Then two minutes, 95. Three minutes, went up to 96. Four minutes, still 96. Anyway, I kept going for 10 minutes on my first try with this thing at 5. Definite proof that I'm getting stronger. Something like that can make my whole day."
Added to his daily therapy routine are visits from specialists. A urologist comes every three weeks to change his catheter. Another doctor comes to change his trach. A podiatrist comes every three weeks to cut his toenails. This must be done by a specialist because an ingrown nail can cause an infection. While he undergoes his therapies, in fact, Reeve is in a state of constant danger. It is generally assumed that because paralyzed patients are immobilized and without feeling in areas of the body, they are also locked in secure positions, safe from diseases and other menaces. But several swords of Damocles hang over people like Reeve that threaten respiratory function, bowels, bladder, urinary tract, skin and emotional well-being.
Last January, shortly after he returned home for good after the stay at Kessler, Reeve suffered so serious a bout of dysreflexia that he had to be hospitalized at Westchester Medical Center. A urinary infection caused a bowel blockage, and his blood pressure soared. The only symptom he could feel--the single sign that something was going wrong--was an excruciating headache. "You know what an ice-cream headache feels like?" he asks. "Take that and multiply it 20 or 30 times. You just want to jump off a cliff." The worst of it was psychological: "You work to escape that sense of helplessness, and it throws you back."
Spasms can occur at any time. In a restaurant, during a public appearance, his body can suddenly jerk about wildly; since brain messages do not get through to the body, it spasms as if out of boredom, waiting for orders that do not come. He had a major spasm three minutes before he went on live at the televised Academy Awards presentation in March--just as he was being rolled out the door of his dressing room.
When he went to Washington to lobby for research funds, he suddenly lost his voice due to a trach replacement that had been made a few days earlier. A trach needs to be changed every three weeks so that tissue does not grow over it. The body tries to expel the trach because it is a foreign element; this is when secretions form. When the tissue grows, it can cut off the air supply by closing the hole in which the trach rests. Every three weeks, the whole apparatus has to be torn out.
"It's one of my least favorite moments," he says. "It's very painful as the whole thing is taken out. And then I have to breathe on my own for a while, while they cut away. The doctor literally takes out a scalpel and cuts away in my throat at the granulated tissue that has formed in there. So it's a little scary. And the down side is that once the trach is changed, it takes a number of days for it to settle into position so that you can talk effectively. So the first couple of days, the slightest movement of the tube will cause the trach to get out of position, and you don't have any voice."
This is what happened just before his appearance on Capitol Hill. He had no trouble with his voice when he met with the Clintons in the White House. But the trach was not in a good position. He was nervous when he got to the Hill: "I mean, all the media were there. I think 12 or 15 Senators were there, all friends and supporters--Paul Simon, Pat Leahy, [Paul] Wellstone from Minnesota, Nancy Kassebaum, John Kerry from Massachusetts, Bob Kerrey from Nebraska--all there in the front row, two feet away from me. Like, right in my face, all sort of looking with great support and ready for me to say something pithy and impressive. And I felt the moment has come, and I'm bombing."
Nobody noticed, mainly because they did not know how fluidly he could speak under normal circumstances. His appearance was noted in more than 200 articles, though "I, of course, went off into a corner and beat myself up about having blown my big moment."
These physical menaces do not include that of depression, which has brought thousands of paralyzed people to a paralysis of the mind and spirit. Reeve too succumbs from time to time. Nor do they include the fear attached to everything new--modified versions of the terror he experienced at taking that first shower at U.Va. Then there is the fact of immobility itself, which entails an entire reorganization of one's image. He loathes the fact that he is developing a small pot belly because of atrophied abdominal muscles.
"One of the real losses in being paralyzed," he says, "is the absence of spontaneity. You can't do things like go for a cup of coffee on a whim. Whenever I leave the house, it's a huge operation. I have the nurses. The van has to be equipped with an oxygen tank, emergency meds and an Ambu bag, which is like a balloon used to pump air into someone manually. We had an episode when I was coming back from New York one time in the winter, and the vent failed just as we were coming up the driveway to the house. We needed the Ambu bag to ventilate me until we could get up to the house. And we were stuck in the driveway in the snow. The nurse was ventilating me as Dana was trying to get the car up the driveway. Without an Ambu bag right there, I would've been in serious trouble."
A subtler difficulty entails a psychological riddle: the simultaneous acceptance of his disability and the desire to fight it. On the one hand, the disabled say to others: Take us as we are. On the other, nobody wants to be disabled. Reeve is both who and what he is and who and what he does not want to be. "You don't want the condition to define you," he says, "and yet it occupies your every thought."
The first brief visit home that he was allowed from Kessler last September was the weekend of his birthday. "It was my first time home since before Memorial Day. And I came up the driveway, and at first I was thrilled to see the house and everything the way it was, and then I just broke down because you realize how much everything has changed and how you are going to be different in the house and how everyone is going to have to make so many changes to accommodate this new life. I got out of the van, and it took me a while before I could come inside. Dana and I just sat in the driveway and held each other until I could sort of pull it together."
In some ways, the injury has proved useful. Everything in his life has become intensified. He focuses more on family than ever before. He observes that a good marriage will be strengthened by such a calamity, but a bad one tends to get worse, and his was good. He is closer to all three children. "I used to sneak away in the mornings and train my horse. I wouldn't give the children the attention they deserved. All these missed connections," he says.
Yet the attention he requires is double-edged: "It takes away other people's opportunities. It changes their expectations. It makes them accommodate me first." There is a bittersweet quality even to some of the good things gained. The first day he got back to his Williamstown home, "I parked myself on a ramp. It was a beautiful, cool afternoon, and I just looked up at the mountains for about two hours and felt very, very peaceful." Then he adds, "These are things that I thought I would learn to do when I was 75, not 43."
He pauses as a new thought occurs to him: "You know, it's the way I used to feel when I would go to see sick people or handicapped people in the Superman years. I was called on to go everywhere as a kind of symbol--to Sloan-Kettering to see terminally ill children, to the Make a Wish Foundation, where the kid's last request is to meet me, you know, even though I'm not Superman. Indulge in the fantasy of meeting the person who plays Superman. Sometimes they didn't even make a distinction. I could show up in blue jeans, and I'd still be Superman to them. And it was heartrending. But I would always have to admit to that secret sigh of relief as you close the door and go back to your own life. On the way out, I would say, 'Oh, thank God.' And now I'm on the other side of the door. And I have to stay in the room and be the one with the problem. And I still have to admit to tremendous jealousy of people doing normal, everyday actions. You know, just putting on a coat and walking down a hallway and opening a door and going outside. Rummaging around in the kitchen cabinet for forks and knives. Using the clicker to change channels on the TV. Taking the steps two at a time. All those things you'd think, you know, after a while you wouldn't even notice. I realize it's petty, but...
"It bothers me when people say, 'You played Superman; now you are Superman.' They mean well, but they don't know what I go through in the middle of the night. I don't know. I guess that if part of the definition of Superman is that you keep on going even if you feel like shit, then I suppose I do reasonably well.
"You know, it's easier to live as an illusion than as a real person. When you are cast as a larger-than-life figure like Superman, there's no place to turn to from people's expectations. At the moment, people are investing a great deal of hope in me. That's very kind, very flattering. But it's more difficult for me to accept that because I'm more real to them than the fictional version was in the past. Even the injury creates a role."
Arthur Ullian feels that Reeve has been indispensable to the cause of spinal-cord injuries. "You'd never have got the national focus without him," he says. "You'd never have got the excitement at NIH. Unfortunately, diseases need icons. Chris has been that." Kirshblum of Kessler adds that Reeve has been invaluable as an inspiration to other patients. "When they hear me encourage them, they can think, 'Talk is cheap.' But they can see Chris." Young of N.Y.U. says Reeve is mainly responsible for getting Congress to pay attention to the issue. While noting that promises from politicians in an election year are like "an 'I love you' from a horny man," Young is certain that Reeve's high profile will spur both Washington and the public.
Scientists like Young are also experiencing more optimism about their work than ever before. The new discoveries may be coincidental with Reeve's injury, but they are given greater enthusiasm because of it. "Where we are right now," Reeve says, "is that the stage has been set. Awareness of spinal-cord injury is at an all-time high. People now understand that something that was thought incurable can be cured. The politicians are motivated, the scientists are motivated, the public is showing concern, and everything is prepared to push to a successful conclusion. Now the question is how to keep the momentum going, making sure that people don't fall by the wayside."
He tilts his angle so that he is nearly straight up in the chair. He looks as if he is about to step forward. "If all the people who are around to help me were mad at me or in a lousy mood or whatever," he says, "and they went away, and they didn't want to feed me or didn't want to clean me or didn't want to put me in a bed or get me out of a bed, there'd be nothing I could do about it. Absolutely nothing. But their compassion, their involvement causes them to put a fork in my mouth, and I take a bite of food. Or turn me over in the bed so I don't get a sore. Or get my blood pressure down when I have dysreflexia. Basically, it comes down to goodwill. Nobody has to do any of those things; I'm completely dependent on them.
"And I feel the same thing about working in the political arena. Nobody has to come up with more money or basically give a damn about people who are in dire straits or suffering. And yet I believe in the goodness of people to the extent that if you can present your case properly, they will respond, that people are at heart compassionate and will respond. What you have to do, I think, is remove the fear in them. The fear that they might be making a mistake. They don't want to make mistakes. They don't want to come out in support of something that will make them look bad. And what I'm trying to do is remove their fear, to make them feel safe to care.
"When Kennedy made that promise, I mean...what chutzpa to do that! Promise to do what other people say is impossible; I guess that's what leadership is. What's the adage? 'Give me a place to stand, and I can move the world'? Well, I'm not comparing myself to the world's leaders. And I can't stand yet. But give me a place to sit."
Reeve undertakes one other exercise program three or four times a week, in which he is brought as close to a standing position as possible. He is carried from his chair to a tilt table by two women nurses and a male trainer. He is placed on a surface that can be cranked up as high as he will go for his body to bear its own dead weight.
One morning he starts out at 50 [degrees] and holds that position for 10 or 15 minutes. The pillow behind his head is removed, and he holds his head straight. Now he is brought up to a 65[degree] angle. His sats are 97, his heart rate 94. The heart rate is going up because his body is supporting 215 lbs.
At 75 [degrees], he looks as if he is nearly upright. This is as high as he has ever gone. He looks out the window of his gym at Will's playhouse and at the daffodils and the pines. He goes to 78 [degrees]. When he reaches his personal record of 80 [degrees], he stops. The nurses are staring at him in amazement. His trainer remarks with admiration how tall he is.
ROGER ROSENBLATT is collaborating with Christopher Reeve on an autobiography