virus: Crippled "Superman" Reeve blames church and Bush

From: Sean Kenny (seankenny@blueyonder.co.uk)
Date: Tue Sep 17 2002 - 00:06:59 MDT


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."



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