Man and superman

Short abstract

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 to hospital after a near fatal riding accident. His injury broke the first and second vertebrae in his neck, leaving him completely paralysed from the neck down. Since then, he has had to spend his life in a wheelchair, on a ventilator, totally reliant on others.

Figure 1.

KEN REGAN/CAMERAFIVE

Had the young man been one of the other 400 000 people so affected in the United States or the 40 000 in Britain, you would never have heard about it. However, he was Christopher Reeve, and the cruel irony of this happening to “Superman,” of all people, thrust him into the limelight at a time of personal crisis.

Reeve was inundated with letters of support and encouragement after the incident. “It was a tremendous boost, particularly in the first couple of months, as I had to come to grips with what happened to me,” he acknowledges. He admits to feeling depressed and suicidal initially. But the love of his family helped pull him through. His wife, Dana, whom he married just three years earlier, resisted his suggestion that they “let him go” and persuaded him to give it another two years.

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, Reeve has not only come to terms with his new life, but seems to have found a new meaning for it.

With a quiet, Clark Kent earnestness, Reeve talks about life in a wheelchair, the importance of taking care of your health, and his campaign work for the Christopher Reeve Paralysis Foundation. In particular, he is keen to expose what he sees as the untenable position of the US government on stem cell research.

Bowing to pressure from various religious and conservative groups, President Bush decided that no government funding would be available for stem cell research unless it used cell lines already available at that time—9 August 2001. Effectively this severely restricts the number of stem cells available in the US for vital research that might help find a cure for Reeve and others like him.

In Britain, however, scientists are still able to develop stem cells under licence, although there have been moves recently within the European parliament to restrict this. However, Reeve is keen to applaud the forward thinking of the UK parliament. “I want to make it clear how grateful I am to the House of Lords committee for making such a courageous decision,” he says. But his pleasure is tinged with regret that the United States is no longer at the cutting edge of science: “I'm afraid we've given up a lot of our pre-eminence.”

Christopher Reeve's injury

When Christopher Reeve fell from his horse he landed directly on his helmet, in a near perpendicular position, breaking two vertebrae in his neck. His spinal cord was not completely severed, but there was a large haemorrhage at the point of the injury. This damaged the nerve fibres that carry information from the brain to the muscles of the body.

Reeve was originally graded as A on the ASIA scale, devised by the American Spinal Injury Association, which gave him little hope of recovery. Until now, it had been thought that if there were any recovery at all it would be in the first six months.

After intensive physical therapy, he is now graded C, which means he has regained sensitivity to touch and pin prick and has some muscle movement—including control of the anal sphincter muscle. He has also had far fewer life threatening medical complications than when he was graded A.

For further details see McDonald JW, Becker D, Sadowsky CL, Jane JA Sr, Conturo TE, Schultz LM. Late recovery following spinal cord injury. Case report and review of the literature. J Neurosurg 2002;97(suppl 2): 252-65.

Strong words from a man who chooses his words carefully; he is reliant on a ventilator, so each sentence is an effort. As he pauses to pick the most appropriate phrase, the machine softly gurgles.

Rather than be hijacked by the stem cell lobby, as some might argue he has been, Reeve has consciously decided to use his celebrity status for a wider benefit than just his own recovery. “I felt it was important to advocate for a technology that can cure Parkinson's and Alzheimer's, cancers, diabetes, leukaemia—the list goes on. Then you are addressing worldwide concerns that will help millions of people. If you go with your hand out for just one condition that affects relatively small numbers of people you are not going to get very far.”

He insists he is using his celebrity status responsibly: “What I don't like are celebrities who haven't really taken the time to study an issue, and in that way become a liability rather than an asset.

“I really have no business talking about stem cells unless I understand what stem cells are, the different types of stem cells, and that I am up to speed on the cutting edge research going on around the world.”

He sits bolt upright, strapped in his electric wheel-chair, a powerful presence in the study of his comfortable Westchester county home, an hour north of New York. Photographs of him and his family are dotted around the house, along with an ageing crayon drawing from his youngest son, Will, now almost 11 years old: “To superman and superwoman... from superboy.”

It all looks idyllic, but when we met, New York was 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 debate over stem cells, yet, at that time, hardly any on the imminent war. “A number of religions think that destroying an embryo, even one that is already destined to be thrown away as medical waste, is immoral. They have weighed in on the issue, talking about the sanctity of life. If you are talking about the sanctity of life, why should there be more debate over an embryo than there is over sending an 18 year old kid to face armed combat in Baghdad? In my mind,” he pauses, carefully, “there is a disconnect there.”

Reeve has always been a political animal, lobbying on public funding of the arts, for example. But he underestimated what he got himself into on stem cells: “I was stunned to find out how controversial it was, particularly in the States. Embryonic stem cells are taken from excess fertilised embryos that are meant to be discarded as medical waste, after a couple have successfully conceived. I cannot comprehend a moral objection to rescuing those embryos, literally from the garbage, in order to use them for stem cell research. I absolutely cannot understand that.

“It really has been devastating to watch the pace of progress slow down because of political controversy. I thought that hope for recovery and for the best outcome for patients would depend on science. I did not anticipate that hope would be so affected by politics. That came as a big shock, a big shock,” he emphatically repeats.

So has the all American boy lost faith in the American dream? “My idealism has certainly been knocked by witnessing first hand the influence that politics has over science,” he admits. “It is really outrageous.”

Fitness and dependency

Reeve's eye is watering. He asks if I would mind finding a tissue and wiping it for him. His throat gets dry during the two hour conversation, and, between questions and answers, I hold a glass of water to his mouth for him to sip. These small tasks bring home the fact that, for all his advantages, he still has to rely on others for every tiny thing.

Reeve was always a keen sportsman, and it is typical of his driven personality that he sticks to a gruelling exercise regimen. “What if you don't feel like it?” I ask, thinking how many times I intend to go to the gym but never make it.

“You do it anyway,” he swiftly replies.

He talks with obvious enthusiasm of his exercise 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 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 lesser extent, in his legs. These movements may seem small but, by spinal injury standards, are pretty amazing, shifting him two grades up the official scale for measuring such movement. They've even made the scientific journals.

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 β 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.

“It can easily be dismissed as a study of one,” Reeve jokes, “but as far as I am aware there have been no professional challenges to the validity of the data. The most likely explanation is that exercise has reawakened dormant pathways. Perhaps there is some small amount of regeneration caused by the exercise.

“But the really remarkable discovery—and the study was published in the Proceedings of the National Academy of Sciences—was that the command to move my finger, move my tongue, and to feel sensation at the bottom of my left foot, all came from the correct part of the motor cortex and pretty much matched an uninjured control subject.

“It means that there is a big deficit right now in terms of my quality of life, but very positive hope for the future—because there is not much that needs to be repaired.”

Patients in control: the way to go

Christopher Reeve never used to visit a doctor; now he relies on doctors and carers continually for his survival and wellbeing. So what makes a good doctor? And a good patient?

“I think that today we are in a new era of medicine, one that is very different from the old. The old way, it used to be that the doctors were the experts, and the patients knew nothing and were expected to rely on the doctors' expertise—literally, `the doctor knows best.'

“It's giving the patient control and developing a partnership with the 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 outcome.

“A good doctor goes the extra mile for his patients, in spite of the limitations of the healthcare system. A good doctor will really take the time to develop a personal relationship with a patient and think creatively to come up with the best possible treatment, rather than just following the protocols set by insurance companies or the administration of the hospital. They need to be independent thinkers who are full of compassion.

“A good patient should learn everything he can about his illness or disability and be willing to try reasonable recommendations and meet challenges that are posed by doctors or patients. A good patient needs to maintain self discipline, so that he can harness his own willpower and the ability of the mind to affect the body to help the doctors who are trying to use to medicine to affect a cure.”

Reeve is a great believer in being proactive over personal health, rather than just leaving it to the doctor to sort out when things go wrong. He likens it to looking after your car properly, rather than just taking it to the garage when something goes wrong:

“If you were to read a couple of books about cars you might be able to change the oil, the spark plugs, adjust the brakes, and do other things so you wouldn't have to go to the garage.

“I urge people not to take their health for granted. To really pay attention to diet and exercise, particularly as people get older. To be very proactive about watching for early signs of conditions that might develop. That means being checked for the possible development of tumours or cancer.

“When I see someone who clearly is not paying attention to their own 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 emotional issues about it. He tried to avoid sticking to the strict regimen of monitoring his insulin levels and was eating inappropriately. I intervened with him, and got him back on track.”

Reeve also believes strongly in the power of the mind over the body. In 1997 he developed a small ulcer on his left ankle, which became infected. Doctors warned that he might have to have an amputation. He was given ceftazidime, a powerful antibiotic, but he also vowed mentally he was going to fight this infection, which he is convinced helped: “I was simply not, not going to let them take my leg, and I definitely think that had an effect on the outcome.”

He also thinks that his own work, as a patient advocate and for the Christopher Reeve Paralysis Foundation, has had a huge benefit on his mental health: “I would say that the opportunity that I have to speak out—and literally be heard around the world—has had a direct effect on my health. There is a reason to get up every morning, beyond being here for my family. I have work to do every day that may affect the outcomes for other patients.”

Since his injury, Reeve, a native New Yorker and typical WASP (white Anglo-Saxon Protestant), has recently found a corner of Christian faith he feels comfortable with—the Unitarian Church.

Does it help him deal with his disability at all, I naively ask?

There is a long pause: “I've never really connected the two, actually.”

Backpeddling fast, I ask if he thinks a belief system can have a positive effect on a person's health.

“Absolutely, absolutely,” he responds without hesitation. “As long as it is genuine, that it comes from within. Often when you are seriously ill or injured, people come to you who want to help. I think that, as a patient, you have to still be true to yourself and not let others, even though they might be well meaning, impose their own beliefs or their own ways of living on you.

“Staying in control, making decisions about your life is really important when you are disabled. Just because your body may be broken, or not functioning, doesn't mean that your heart and your mind aren't functioning. In fact, you have an opportunity to develop your heart and your mind in a way you might not have discovered otherwise.”

Reeve has certainly had plenty of time to do that. So what good, if any, has come from his tragedy? It's nearing the end of the interview, and he's tired, but it's clearly something he has thought a great deal about 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 would like to be rich' or `to be famous.' But I bet that the majority would say, `I would like to make a difference.'

“Quite unexpectedly I have been put in the position of...” he pauses, then corrects himself, “given the opportunity to make a significant difference, to become a spokesman for people who will never be heard. I hope it doesn't sound egotistical, but,” there is a long pause as he finds the words, “that's the good that can come out of this.”