Skip to comments.Man of steel (Bush must share the blame for Reeve not standing on his 50th birthday)
Posted on 09/16/2002 7:08:42 PM PDT by Pokey78
In 1995, after the accident which left him paralysed, Christopher Reeve said he wanted to be on his feet by his 50th birthday. That's next week, and although he has made amazing progress, he won't be standing - and for that, he says, George Bush must share the blame. He tells Oliver Burkeman why
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 Morosini, his wife, still asleep at his side, he'd have to run through it all again in his head. In his dreams, he was never paralysed - he'd be skiing and horseriding and sailing, like before - so it took a daily effort of will, there in the silence, to drag himself back to the reality that he couldn't move his body below the neck, or even feel it.
These days, he often doesn't wake until the alarm goes off at eight, 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, 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.
Then, on this particular day, they slather him with makeup for a documentary he'll be working on later, and wheel him down the sun-flooded lobby of his home in upstate New York to a small, impeccably furnished front room, lined with photographs of Reeve before his catastrophic 1995 horse-riding injury, and with books: on drama theory, on classical mythology, on abstract expressionism, and a hefty coffee-table number on the films of Merchant Ivory.
"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 6ft 4in, 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, the good looks that, when he was younger, would have made any career but that of movie star seem profoundly misguided. I am four inches shorter, swallowed up by a low, deep armchair, with the result that Reeve peers down at me from a commanding height as he speaks. It isn't the way the able-bodied and the wheelchair-bound normally interact.
"Sometimes I won't even notice what's being done," he says of his morning manoeuvres. "My mind just goes miles away. It's all become such a routine that it's second nature." Some things haven't changed, though. "I've still never had a dream that I'm disabled," he says. "Never."
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 - dappled lanes, Colonial-era houses, gleaming white church spires and grass so vividly green it might have been treated with extra chlorophyll. And he has money - enough to live in a vast, airy, modernist home, secluded on a hill shrouded by woodland; enough to have had it adapted to include, among other things, a lift; and enough to pay for a small army of aides, including his longtime nurse, Dolly Arro, who glides into the room at intervals to feed him water through a straw.
He spends £270,000 on treatment each year, and much of the equipment used in his therapy has been donated by the manufacturers. You might catch yourself thinking that, given his quadriplegia, Reeve could not hope for more, but the point, of course, is that he does. Shortly after the accident, he vowed that he would walk again by the time he was 50. His birthday is a week tomorrow.
"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, speaking in deliberate, fully-formed sentences, and only occasionally gasping on his words as he breathes through the ventilator. "I never said I will stand, I said I hoped to stand. It wasn't a prediction." Still - although he is plainly guarded on the subject of his own emotions - he admits he can't help but brood. "It's defeatist to harp on what might have been, and yet, it's hard to resist considering what might have been," he says.
"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 $12bn when I was injured to over $27bn now. What I did not expect was that hope would be influenced by politics."
In his 1998 autobiography, Still Me, Reeve described how his anger was mainly directed at himself, how he had failed himself, and his family - his wife, Dana, their son Will, now nine, and his two older children from a previous relationship, Matthew and Alexandra. "It dawned on me," he writes, that "I was going to be a huge burden to everybody, that I had ruined my life and everybody else's." Now, though, it is sharply focused on America's politicians and religious leaders, and the way they have, in his view, impeded research in therapeutic cloning and stem cells - research that might otherwise, by now, have led to human trials of drugs designed to regrow the nervous systems of people like Reeve.
"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."
Reeve's public persona is well established by now: he is the man who played Superman and then became Superman, a living demonstration of the benefits of hope and positivity in the face of a catastrophe that might have destroyed him mentally - and so there is something startling about the intensity of his 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. 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 to create an embryo? "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. I know it's a rather cynical way to look at it, however, it's very important to look logically at the problem, rather than emotionally."
Logic has its limits, though. "I do have an emotional response, sitting here, approaching my 50th birthday, to opponents who do not have a consistent moral point of view," he says. "I'm angry, and disappointed... I think we could have been much further along with scientific research than we actually are, and I think I would have been in quite a different situation than I am today." Dolly Arro appears silently at Reeve's right foot and drains the tube hidden beneath his trouser-leg into a black bottle. If Reeve considers this an indignity, he does not show it. He doesn't even pause.
Reeve has been accused of providing false hope to patients with no real chance of recovery. But his accusers "tend not to be up to date with the latest research", he says - "or they've been injured for so long, and their quality of life is so poor, that they don't dare to hope."
After all, who can say how less false his hope might have seemed if George Bush, after appointing a commission to examine the issue of therapeutic cloning, hadn't rendered it impotent by coming out against the technique before its report was published? "Who knows what might have been accomplished if there had been fair play politically?" he says.
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 placed on his quadriceps and hamstrings - his muscles can be made to contract and he can, in effect, pedal 10 miles 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% of his body. He can feel the prick of a needle, and the difference between hot and cold. He describes much of it in a new book of short essays, entitled Nothing Is Impossible.
"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 - scared, perhaps, by a rabbit, Reeve has speculated - 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." New tests show that the time between him thinking about moving his finger and the motion being accomplished is as short as in an unparalysed person.
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, and he is embarrassed by the idea that people might think otherwise.
Within weeks of his accident he was starting the advocacy work that would lead to the Christopher Reeve Paralysis Foundation and the Reeve-Irvine research centre at the University of California. Yet despite his long history of supporting liberal political causes before his accident, the obstacles to his campaign still came as a shock. "I know of one scientist who in 1996 was working, with rats, developing a drug that would cause regeneration in the central nervous system," he says. "And the human trials were only delayed because of lawsuits brought against him by a small pharmaceutical company that had funded some of his early work and wanted a bigger piece of the pie now that he was about to work on humans. This is simply profiteering."
Surely all this might easily lead to depression and despair? No, Reeve insists: that is something he insists he will not tolerate. "I have moments of anger. But am I in despair about it? No, I'm not. Despair is a very bleak word." When he feels frustrated, he says, he turns his attention to his family, or to the numerous projects he's immersed in: the foundation, publicising the new book, writing speeches, examining screenplays he may direct. He has already, since his injury, directed a television movie and starred in a television remake of Hitchcock's Rear Window. He will celebrate his birthday 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.
"Not letting negativity get the upper hand is really, really critical. Not only to your mental outlook, but literally to your physical health, because if negativity's allowed to fester, it causes health problems."
No, says Reeve, things are looking up. He can move, a little, and feel, quite a bit, and he's practising breathing without a hose, using a pressure-support ventilator which allows him to use his diaphragm without the obstructive weight of his internal organs. He's not in pain, he says - "knock on wood". Even the least dignified part of his daily routine, when an aide has to push on his stomach to help him empty his bowels - well, "everybody just does it efficiently and proficiently. The less said about it the better." He doesn't even need to turn his head when he is driven past the barn where he used to keep his horse. "And I don't mind at all hearing about the exploits of friends of mine I used to ride with," he says.
"You know, the accident's power is diminishing. Do I wish it hadn't happened?" It's an absurd question, but he answers it anyway. "Absolutely... but 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."
Never mind. I'll put one here.
alert while you're at it.
Hooooray! Someone had the guts to say that!
He was injured in 1995. Clinton had a full term to bring Reeve to his feet. Nary a mention of Clinton's stinginess.
I never thought a guy in a wheelchair could inspire loathing, but Larry Flynt and Christopher Reeve have done it.
He did something, on his own volition, that got himself injured. Rather than face the facts, he is shifting blame to others.
It says something about his own worldview that he believes that if he is a cripple, his worth as a human being is greatly lessened.
Let's set technology free to cure disease and extend our lifespans. Who knows - one day there might even be jobs again.
So mining the body parts of the murdered unborn just comes naturally.
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