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					Interview



Man and superman
Lynn Eaton

Christopher Reeve—“Superman”—is rarely out of the limelight since a riding accident left him
severely disabled. Certainly his fame—and fortune—have helped him deal with his disability, but his
apparent emphasis on the importance of walking has outraged the disability lobby


On a May morning in 1995, a young man was rushed                                                                           BMJ, London
to hospital after a near fatal riding accident. His injury                                                                 Lynn Eaton
                                                                Christopher Reeve’s injury                                 freelance journalist
broke the first and second vertebrae in his neck,                                                                          and editor of patients
leaving him completely paralysed from the neck down.            When Christopher Reeve fell from his horse he              theme issue
                                                                landed directly on his helmet, in a near perpendicular
Since then, he has had to spend his life in a wheelchair,                                                                  leaton@bmj.com
                                                                position, breaking two vertebrae in his neck. His spinal
on a ventilator, totally reliant on others.                     cord was not completely severed, but there was a large
    Had the young man been one of the other 400 000             haemorrhage at the point of the injury. This damaged       BMJ 2003;326:1287
people so affected in the United States or the 40 000 in        the nerve fibres that carry information from the brain
Britain, you would never have heard about it. However,          to the muscles of the body.
he was Christopher Reeve, and the cruel irony of this              Reeve was originally graded as A on the ASIA scale,
                                                                devised by the American Spinal Injury Association,
happening to “Superman,” of all people, thrust him
                                                                which gave him little hope of recovery. Until now, it
into the limelight at a time of personal crisis.                had been thought that if there were any recovery at all
    Reeve was inundated with letters of support and             it would be in the first six months.
encouragement after the incident. “It was a tremen-                After intensive physical therapy, he is now graded C,
dous boost, particularly in the first couple of months, as      which means he has regained sensitivity to touch and
I had to come to grips with what happened to me,” he            pin prick and has some muscle movement—including
acknowledges. He admits to feeling depressed and sui-           control of the anal sphincter muscle. He has also had
                                                                far fewer life threatening medical complications than
cidal initially. But the love of his family helped pull him     when he was graded A.
through. His wife, Dana, whom he married just three
                                                                For further details see McDonald JW, Becker D,
years earlier, resisted his suggestion that they “let him       Sadowsky CL, Jane JA Sr, Conturo TE, Schultz LM.
go” and persuaded him to give it another two years.             Late recovery following spinal cord injury. Case report
                                                                and review of the literature. J Neurosurg 2002;97(suppl
                                                                2):252-65.
Finding a sense of purpose
Coming to terms with disability or a long term medical
condition is hard enough for anyone. Doing it in the
media spotlight can’t be easy. Now, eight years on,           forward thinking of the UK parliament. “I want to
Reeve has not only come to terms with his new life, but       make it clear how grateful I am to the House of Lords
seems to have found a new meaning for it.                     committee for making such a courageous decision,” he
    With a quiet, Clark Kent earnestness, Reeve talks         says. But his pleasure is tinged with regret that the
about life in a wheelchair, the importance of taking          United States is no longer at the cutting edge of
care of your health, and his campaign work for the            science: “I’m afraid we’ve given up a lot of our
Christopher Reeve Paralysis Foundation. In particular,        pre-eminence.”
he is keen to expose what he sees as the untenable                 Strong words from a man who chooses his words
position of the US government on stem cell research.          carefully; he is reliant on a ventilator, so each sentence
    Bowing to pressure from various religious and             is an effort. As he pauses to pick the most appropriate
conservative groups, President Bush decided that no           phrase, the machine softly gurgles.
government funding would be available for stem cell                Rather than be hijacked by the stem cell lobby, as
research unless it used cell lines already available at       some might argue he has been, Reeve has consciously
that time—9 August 2001. Effectively this severely            decided to use his celebrity status for a wider benefit
restricts the number of stem cells available in the US        than just his own recovery. “I felt it was important to
for vital research that might help find a cure for Reeve      advocate for a technology that can cure Parkinson’s and
and others like him.                                          Alzheimer’s, cancers, diabetes, leukaemia—the list goes
    In Britain, however, scientists are still able to         on. Then you are addressing worldwide concerns that
develop stem cells under licence, although there have         will help millions of people. If you go with your hand out
been moves recently within the European parliament            for just one condition that affects relatively small
to restrict this. However, Reeve is keen to applaud the       numbers of people you are not going to get very far.”


BMJ VOLUME 326    14 JUNE 2003   bmj.com                                                                                           page 1 of 4
Interview

                  He insists he is using his celebrity status                                    taken from excess fertilised embryos that are meant to
              responsibly: “What I don’t like are celebrities who                                be discarded as medical waste, after a couple have suc-
              haven’t really taken the time to study an issue, and in                            cessfully conceived. I cannot comprehend a moral
              that way become a liability rather than an asset.                                  objection to rescuing those embryos, literally from the
                  “I really have no business talking about stem cells                            garbage, in order to use them for stem cell research. I
              unless I understand what stem cells are, the different                             absolutely cannot understand that.
              types of stem cells, and that I am up to speed on the                                  “It really has been devastating to watch the pace of
              cutting edge research going on around the world.”                                  progress slow down because of political controversy. I
                  He sits bolt upright, strapped in his electric wheel-                          thought that hope for recovery and for the best
              chair, a powerful presence in the study of his comfort-                            outcome for patients would depend on science. I did
              able Westchester county home, an hour north of New                                 not anticipate that hope would be so affected by
              York. Photographs of him and his family are dotted                                 politics. That came as a big shock, a big shock,” he
              around the house, along with an ageing crayon                                      emphatically repeats.
              drawing from his youngest son, Will, now almost 11                                     So has the all American boy lost faith in the Ameri-
              years old: “To superman and superwoman . . . from                                  can dream? “My idealism has certainly been knocked
              superboy.”                                                                         by witnessing first hand the influence that politics has
                  It all looks idyllic, but when we met, New York was                            over science,” he admits. “It is really outrageous.”
              on “orange terror alert” and on the brink of war with
              Iraq. Reeve makes no bones about the hypocrisy of the
              situation—that the United States has had endless moral
                                                                                                 Fitness and dependency
              debate over stem cells, yet, at that time, hardly any on                           Reeve’s eye is watering. He asks if I would mind finding
              the imminent war. “A number of religions think that                                a tissue and wiping it for him. His throat gets dry
              destroying an embryo, even one that is already                                     during the two hour conversation, and, between
              destined to be thrown away as medical waste, is                                    questions and answers, I hold a glass of water to his
              immoral. They have weighed in on the issue, talking                                mouth for him to sip. These small tasks bring home the
              about the sanctity of life. If you are talking about the                           fact that, for all his advantages, he still has to rely on
              sanctity of life, why should there be more debate over                             others for every tiny thing.
              an embryo than there is over sending an 18 year old                                    Reeve was always a keen sportsman, and it is typical
              kid to face armed combat in Baghdad? In my mind,” he                               of his driven personality that he sticks to a gruelling
              pauses, carefully, “there is a disconnect there.”                                  exercise regimen. “What if you don’t feel like it?” I ask,
                  Reeve has always been a political animal, lobbying                             thinking how many times I intend to go to the gym but
              on public funding of the arts, for example. But he                                 never make it.
              underestimated what he got himself into on stem cells:                                 “You do it anyway,” he swiftly replies.
              “I was stunned to find out how controversial it was,                                   He talks with obvious enthusiasm of his exercise
              particularly in the States. Embryonic stem cells are                               programme. This includes using an electric stimulator
                                                                                                 on his leg muscles, which triggers them to pedal on a
                                                                                                 stationary bike, something he does for 45 minutes,
                                                                                                 three days a week. He goes to a pool every other week,
                                                                                                 where he gets a chance to practise taking steps.
                                                                                                     In an attempt to wean himself off the ventilator, he
                                                                                                 has a rigorous programme of diaphragm conditioning,
                                                                                                 trying to work the intercostal muscles between his ribs
                                                                                                 for 15 minutes at a time off the ventilator. He has also
                                                                                                 recently had an electronic device inserted into the skin
                                                                                                 near these muscles to trigger the nearby phrenic
                                                                                                 nerves and cause a contraction. This forces air into the
                                                                                                 lungs and could eventually help him breathe without
                                                                                                 having to rely on the ventilator.
                                                                                                     Most people with his injury would suffer endless
                                                                                                 urinary tract infections, or ulcers on pressure points.
                                                                                                 Reeve almost lost a leg in 1997 when an ulcer became
                                                                                                 badly infected. “But now I’m actually in very good
                                                                                                 health,” he says, with a slightly ironic smile. “At the very
                                                                                                 least, all the training and exercise and nutrition has
                                                                                                 kept me out of hospital pretty much over the last four
                                                                                                 and half years, whereas in the early stages I was
                                                                                                 frequently hospitalised with pneumonia, collapsed
                                                                                                 lungs, broken bones. You know, that’s no way to live.”
                                                                                                     But there have been other effects of his so called
                                                                                                 activity based recovery programme, which he started in
                                                                                                 1999. No one with his level of injury had ever received
                                                                          KEN REGAN/CAMERAFIVE




                                                                                                 such intensive treatment before, but Reeve was
                                                                                                 determined not to let his muscles waste away. He
                                                                                                 astounded scientists by managing to raise a finger on
                                                                                                 his left hand in September 2000, and has since
                                                                                                 managed to move muscles in his upper arms and, to a


page 2 of 4                                                                                                          BMJ VOLUME 326    14 JUNE 2003   bmj.com
                                                                                                                              Interview



  Stem cell research
  What exactly is Christopher Reeve arguing for?
  Scientists believe they can use stem cells to develop healthy new tissue, which could then be used to replaced damaged
  tissues in the body. Reeve wants scientists to be able to forge ahead with this research.
  What is a stem cell?
  Stem cells are unspecialised cells that are able to replicate and can be influenced by their environment to take on
  specialised properties. So, for example, a blood stem cell (which is usually present in the bone marrow) cannot carry
  oxygen to tissues of the body, but it can give rise to the specialised red blood cells capable of doing the job.
     There are two types of stem cells of interest to general medical science—adult stem cells (such as blood stem cells)
  and embryonic stem cells. Adult stem cells are usually only able to generate their tissue of origin, whereas embryonic
  stem cells can, in theory, be used to generate any tissue of the body.
  How can this help cure diseases?
  Stem cells could be used to introduce healthy, dopamine producing neurones in the brain of a patient with
  Parkinson’s disease. Or they could be used to transplant insulin-producing pancreatic cells into patients with
  diabetes. If the cells come from the patient’s own body, it reduces the risk of rejection.
     They could, in theory, be used to replace the damaged tissue in patients with spinal cord injury—thus restoring the
  signals from the brain to parts of the body which are paralysed. But this is only one of many areas of research into
  tackling such injury.
  So what’s the problem?
  Using a patient’s own stem cells—adult stem cells—is not easy as adult stem cells can be hard to find. In the blood, for
  example, there is only one stem cell for every 10 million ordinary ones.
    However, scientists have discovered that cells taken from a newly fertilised human embryo—one just five days
  old—contain a high number of stem cells. These “embryonic” stem cells can be gathered from the discarded embryos
  collected from in vitro fertilisation clinics. Once a couple has successfully conceived, any extra eggs that have been
  fertilised in a test tube, and are being stored by the laboratory as a back up, are discarded. But scientists could use
  them to develop numerous stem cell lines, thereby creating a bank of tissue types that would be more likely to match
  different patients.
    But some people feel that it is wrong to use these embryos, arguing that life begins at the point of fertilisation and
  that fertilised eggs should not be used in this way.
  Is this the same as cloning?
  No. Cloning is a different method of cultivating stem cells, through cell nuclear replacement, a process that uses an
  unfertilised egg. Scientists replace the original nucleus of the egg with the nucleus of an adult cell. The adult nucleus
  then becomes reprogrammed into an embryonic state, and the embryo begins development. It should be possible to
  derive stem cells from this early embryo. The newly created cells could be used to create tissue for different parts of
  the body.
     Therapeutic cloning (that is, for treatments) is controversial because it could, potentially, be used for reproductive
  cloning (in the same way that scientists produced Dolly the sheep).
  Isn’t treatment still a long way off?
  Scientists have yet to carry out human trials to prove that tissue and cells created from embryonic stem cells can be
  used successfully to treat diseases. They have to know the cells they use are safe and reliable: the cells might be
  rejected or might increase the risk of cancer, for example. Experiments have been done on mice, however.
  What is stopping the scientists?
  The US government has bowed to pressure from various religious and conservative groups and restricted the number
  of stem cells available for research, which scientists argue will hamper progress. President Bush decided the
  government would fund some stem cell research in the United States—but only if it was carried out on one of the 60
  stem cell lines worldwide that were derived before 9 August 2001, when he made his ruling.
     In 2001 a House of Lords select committee decided that therapeutic cloning was acceptable, but reproductive
  cloning was not. Their decision was challenged by the pro-life lobby, and the case went to the Court of Appeal, but the
  government won.
     Subsequently, the Human Fertilisation and Embryology Agency has licensed researchers in Edinburgh and London
  to develop stem cell lines from spare human embryos left over after fertility treatment. Any new stem cells that they
  create will be deposited in a national stem cell bank, set up by the Medical Research Council.
     But a threat now hangs over that, as the European parliament is considering calls from European MPs to restrict
  stem cell research throughout Europe.




lesser extent, in his legs. These movements may seem                 “But the really remarkable discovery—and the
small but, by spinal injury standards, are pretty                study was published in the Proceedings of the National
amazing, shifting him two grades up the official scale           Academy of Sciences—was that the command to move my
for measuring such movement. They’ve even made the               finger, move my tongue, and to feel sensation at the
scientific journals.                                             bottom of my left foot, all came from the correct part of
    “It can easily be dismissed as a study of one,” Reeve        the motor cortex and pretty much matched an
jokes, “but as far as I am aware there have been no              uninjured control subject.
professional challenges to the validity of the data. The             “It means that there is a big deficit right now in
most likely explanation is that exercise has reawakened          terms of my quality of life, but very positive hope for
dormant pathways. Perhaps there is some small                    the future—because there is not much that needs to be
amount of regeneration caused by the exercise.                   repaired.”

BMJ VOLUME 326    14 JUNE 2003   bmj.com                                                                                       page 3 of 4
Interview

                                                                                    Foundation, has had a huge benefit on his mental
  Patients in control: the way to go                                                health: “I would say that the opportunity that I have to
                                                                                    speak out—and literally be heard around the
  Christopher Reeve never used to visit a doctor; now he relies on doctors
                                                                                    world—has had a direct effect on my health. There is a
  and carers continually for his survival and wellbeing. So what makes a good
  doctor? And a good patient?                                                       reason to get up every morning, beyond being here for
     “I think that today we are in a new era of medicine, one that is very          my family. I have work to do every day that may affect
  different from the old. The old way, it used to be that the doctors were the      the outcomes for other patients.”
  experts, and the patients knew nothing and were expected to rely on the               Since his injury, Reeve, a native New Yorker and
  doctors’ expertise—literally, ‘the doctor knows best.’                            typical WASP (white Anglo-Saxon Protestant), has
     “It’s giving the patient control and developing a partnership with the
                                                                                    recently found a corner of Christian faith he feels com-
  patient. That is clearly the way to go. Doctors and patients really need to
  collaborate on reversing illness and disability or achieving the best possible    fortable with—the Unitarian Church.
  outcome.                                                                              Does it help him deal with his disability at all, I
     “A good doctor goes the extra mile for his patients, in spite of the           naively ask?
  limitations of the healthcare system. A good doctor will really take the time         There is a long pause: “I’ve never really connected
  to develop a personal relationship with a patient and think creatively to         the two, actually.”
  come up with the best possible treatment, rather than just following the
                                                                                        Backpeddling fast, I ask if he thinks a belief system
  protocols set by insurance companies or the administration of the hospital.
  They need to be independent thinkers who are full of compassion.                  can have a positive effect on a person’s health.
     “A good patient should learn everything he can about his illness or                “Absolutely, absolutely,” he responds without
  disability and be willing to try reasonable recommendations and meet              hesitation. “As long as it is genuine, that it comes from
  challenges that are posed by doctors or patients. A good patient needs to         within. Often when you are seriously ill or injured,
  maintain self discipline, so that he can harness his own willpower and the        people come to you who want to help. I think that, as a
  ability of the mind to affect the body to help the doctors who are trying to
  use to medicine to affect a cure.”
                                                                                    patient, you have to still be true to yourself and not let
     Reeve is a great believer in being proactive over personal health, rather      others, even though they might be well meaning,
  than just leaving it to the doctor to sort out when things go wrong. He           impose their own beliefs or their own ways of living on
  likens it to looking after your car properly, rather than just taking it to the   you.
  garage when something goes wrong:                                                     “Staying in control, making decisions about your
     “If you were to read a couple of books about cars you might be able to         life is really important when you are disabled. Just
  change the oil, the spark plugs, adjust the brakes, and do other things so
  you wouldn’t have to go to the garage.
                                                                                    because your body may be broken, or not functioning,
     “I urge people not to take their health for granted. To really pay attention   doesn’t mean that your heart and your mind aren’t
  to diet and exercise, particularly as people get older. To be very proactive      functioning. In fact, you have an opportunity to
  about watching for early signs of conditions that might develop. That means       develop your heart and your mind in a way you might
  being checked for the possible development of tumours or cancer.                  not have discovered otherwise.”
     “When I see someone who clearly is not paying attention to their own               Reeve has certainly had plenty of time to do that.
  health I try to intervene, particularly in my own family. One of my brothers
  has diabetes and went through a period a few years ago when he had                So what good, if any, has come from his tragedy? It’s
  emotional issues about it. He tried to avoid sticking to the strict regimen of    nearing the end of the interview, and he’s tired, but it’s
  monitoring his insulin levels and was eating inappropriately. I intervened        clearly something he has thought a great deal about
  with him, and got him back on track.”                                             and wants to impart: “If you were to stop the average
                                                                                    person on the street and say ‘If you had to pick one
                                                                                    goal in life, what would it be?’ some people would say, ‘I
                         Reeve also believes strongly in the power of the           would like to be rich’ or ‘to be famous.’ But I bet that the
                     mind over the body. In 1997 he developed a small ulcer         majority would say, ‘I would like to make a difference.’
                     on his left ankle, which became infected. Doctors                  “Quite unexpectedly I have been put in the
                     warned that he might have to have an amputation. He            position of . . .” he pauses, then corrects himself, “given
                     was given ceftazidime, a powerful antibiotic, but he also      the opportunity to make a significant difference, to
                     vowed mentally he was going to fight this infection,           become a spokesman for people who will never be
                     which he is convinced helped: “I was simply not, not           heard. I hope it doesn’t sound egotistical, but,” there is
                     going to let them take my leg, and I definitely think that     a long pause as he finds the words, “that’s the good that
                     had an effect on the outcome.”                                 can come out of this.”
                         He also thinks that his own work, as a patient advo-
                     cate and for the Christopher Reeve Paralysis                   Competing interests: None declared.




page 4 of 4                                                                                             BMJ VOLUME 326    14 JUNE 2003   bmj.com

				
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