An accident in 1995 severed Christopher Reeve's spinal cord, but it hasn't splintered his will. His progress to reclaim motor and neural function has astonished doctors, writes Oliver Burkeman.
Waking up isn't as tough as it used to be. For years after the accident, Christopher Reeve's eyes would snap open at six and, in the morning stillness, with Dana, his wife, still asleep at his side, he'd have to run through it all again in his head. These days, he often doesn't wake until the alarm goes off at 8 a.m., and then it's straight into his morning routine: he takes a bucketful of vitamins, and then his nurse and a helper flex his legs and arms for at least an hour, keeping them supple and helping to stop them leaping about in uncontrollable spasms.
They tape electrodes to his limbs and stimulate his muscles for another hour - he tries to eat breakfast at the same time - and then they wash and dress him and lift him into his wheelchair, strapping his arms down to the arm-rests and adjusting the padded support which cradles his head and neck. They connect a pipe to his throat and hook it up to a ventilator behind the backrest, and they attach a valve that collects his urine in a tube concealed in his right trouser-leg. By this point, it's usually getting on for noon.
"I learned years ago to come to terms with having so much done for me by others," Reeve says, in a loud, resonant monotone that doesn't quite drown the hissing inhalation and exhalation of the ventilator. He's an imposing presence at 6 feet 4inches (1.93 metres), and the wheelchair seat lifts him high off the ground. An air pipe is positioned in front of his face, and he can adjust the chair by blowing on it. His features are pinched, his eyes red-rimmed, but the handsomeness is still there.
I'm swallowed up by a low, deep armchair, with the result that Reeve peers down from a commanding height as he speaks. It isn't the way the able-bodied and the wheelchair-bound normally interact.
It sounds strange to say it, but Reeve is, in a certain sense, a fortunate man, and he knows it. Bedford, in Westchester County, New York, is a cartoonishly idyllic slice of rural America, and Reeve has enough money to have had his modernist home adapted to include, among other things, a lift and a small army of aides. He spends $400,000 on treatment each year, and much of the equipment used in his therapy has been donated by the manufacturers. Shortly after the accident, he vowed that he would walk again by the time he was 50. His birthday is next week.
"What I actually said was that I hoped to be on my feet by my 50th birthday, and to thank everyone who'd helped me on my way," he says today. "I never said I will stand, I said I hoped to stand. It wasn't a prediction, and it shouldn't be characterised as such."
"I'm not despairing, but I'm disappointed. When I was first injured, I thought hope would be a product of adequate funding, and bringing enough scientific expertise to the problem. But those are not the problems - the budget of the National Institutes of Health has risen from $12 billion when I was injured to over $27 billion. What I did not expect was that hope would be influenced by politics."
In his 1998 autobiography, Still Me, Reeve's anger was mainly directed at himself, how he had failed himself, and his family - his wife, Dana, their son Will, now nine, and two older children, Matthew and Alexandra. Now, though, it is sharply focused on US politicians and religious leaders.
"If we'd had full government support, full government funding for aggressive research using embryonic stem cells from the moment they were first isolated, at the University of Wisconsin in the winter of 1998 - I don't think it unreasonable to speculate that we might be in human trials by now."
There is something startling about the intensity of Reeve's rage. "We've had a severe violation of the separation of church and state in the handling of what to do about this emerging technology. Imagine if developing a polio vaccine had been a controversial issue," he says. "There are religious groups - the Jehovah's Witnesses, I believe - who think it's a sin to have a blood transfusion. Well, what if the president for some reason decided to listen to them, instead of to the Catholics, which is the group he really listens to in making his decisions about embryonic stem cell research? Where would we be with blood transfusions?"
Stem cells have the ability to grow into any kind of body tissue, and he can see why those derived from fertilised eggs have sparked an ethical controversy, he says. But why the hold-ups and objections to therapeutic cloning, or somatic cell nuclear transfer, in which a patient's DNA is transplanted into an unfertilised egg?
"Some religious and social conservatives say that that egg, by itself, is an individual. I find it hard to understand. If that egg is an individual, it means it has the same status as a living human being. When human beings die, the next of kin ordinarily have a funeral. So if you follow their logic, women should be having funerals for these so-called individuals that they lose every 30 days."
The good news is that he is moving again. He has some motion in the fingers of both hands, and when he's lying flat, with his leg bent at 90 degrees, and a helper applying her full body weight against his foot, he can push his leg straight again. With electricity pulsing through his legs - via electrodes - his muscles can be made to contract and he can, in effect, pedal 10 miles (16 kilometres) on an exercise bike in an hour. Just as important, though, if less visible, is the partial sense of touch he has recovered in about 65 per cent of his body. He can feel the prick of a needle, and the difference between hot and cold.
"Of course, motor recovery is more dramatic, because you can see it happen," he says. "But sensory recovery . . . to feel touch, after years of going without it, is very meaningful. It makes a huge difference. It means I can feel my kids' touch. It makes all the difference in the world."
None of this was supposed to happen. In May 1995, Reeve was taking part in a cross-country equestrian event when his thoroughbred horse, Buck, halted abruptly before a jump and pitched his rider head-first to the ground. Reeve's hands were tangled in the reins, so he was powerless to break his fall, and his skull literally became separated from his spinal cord. In intensive care, on a respirator, after the spinal cord had been reattached, he mouthed to Dana: "Maybe we should let me go."
The reattachment was itself a milestone in surgical history, but his doctors were still more astonished when, in 2000, he began to feel the first twitches of motor recovery. "The conventional wisdom is that with an injury as serious as mine, you don't recover later than one year after," Reeve says. He remembers being in New Orleans, at a cocktail reception for a symposium of neuroscientists, two years ago, when his doctor, John MacDonald of Washington University, approached with a colleague to ask how he was. "Well, eventually they always come around to the same question: 'Is there anything new?' And I said, 'Let me show you something.' And I moved my left index finger on command. I said, 'Move' - so that they would know it wasn't just happening randomly - and the finger moved. I don't think Dr MacDonald would have been more surprised if I had just walked on water."
His recovery is unprecedented, but Reeve and his doctors agree it is largely the result of intensive physical therapy, not some miraculous power of will. "I think people mean well, they mean it as a compliment, when they say that I played Superman, but now I am Superman," he says, weighing his words with care. "But I really don't know about that . . ."
When he feels frustrated, Reeve says, he turns his attention to his family, or to the numerous projects he's immersed in: he has, since his injury, directed a television film and starred in a television remake of Hitchcock's Rear Window. He will celebrate hisbirthday next week with a New York fundraising event attended by his long-standing friend, Robin Williams, as well as Barbara Walters, Catherine Zeta Jones and Michael Douglas.
"You know, the accident's power is diminishing. I find that it's best to think, well, what can I do today? Is there something I can accomplish, a phone call I can make, a letter I can write, a person I can talk to, that will move things forward? We have to learn to live a new life that would not have seemed possible. But that's not something you need to be Superman to accomplish." - (Guardian service)