From: Walter Watts (wlwatts@cox.net)
Date: Tue Sep 17 2002 - 08:02:59 MDT
It is not anti-american.
It is anti-stupidity.
It just "happens" to take place in America.
Can we all stop referring to the U.S. in such monolithic terms.
I live there and I'm fighting the good fight against myth and irrationality
on a daily basis.
Thanks for the article, Sean.
Walter
Sean Kenny wrote:
> apologies if this is anti-american
>
> http://www.guardian.co.uk/genes/article/0,2763,793585,00.html
>
> Man of steel
>
> 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
>
> Tuesday September 17, 2002
> The Guardian
>
> 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."
-- Walter Watts Tulsa Network Solutions, Inc. "No one gets to see the Wizard! Not nobody! Not no how!"
This archive was generated by hypermail 2.1.5 : Wed Sep 25 2002 - 13:28:58 MDT