Jenny, one of my regular morning carers, brought me the news of the death of Christopher Reeve when she came to get me up this morning. She looked nervous as she told me, as if he was a member of my own family. I must have spoken of him often, as I have been receiving emails and telephone calls from friends all morning. I have never met him, nor spoken to him, but he has loomed large in my life since I broke my neck four and a half years ago and suffered a paralysis almost as severe as his.
Reeve was always a controversial figure among people with spinal injuries, and particularly with the more traditional medical establishments of spinal injury units. His message of hope for a cure was regarded as irresponsible and misleading. Whenever his name was mentioned it was either with frustration or a sneer, and I have often heard it said: "His name is a dirty word in this house."
It was thought that he distracted people from the essential business of adapting to life as a paraplegic or a tetraplegic, encouraging us to live for a false future rather than a realistic present. In spinal units all over the country, and probably all over the world, the newly injured are taught to accept their fate, often with almost brutal insistence. Learning how to cope with the practicalities of life - eating, drinking, dressing, taking care of your skin always took precedence over psychological adjustment to the catastrophe that had befallen us - as if they were mutually exclusive.
Chris probably was overoptimistic about the prospects of a cure - and certainly in his goal of being able to walk again by the time he was 50 - but he gave hope to many, including me, and he really did put his money where his mouth was, raising millions of dollars for spinal research through the Christopher Reeve Paralysis Foundation. He insisted that all research funded by the foundation be focused on some aspect of a cure and that projects would only be chosen after input from lay people suffering from the condition - not always a popular attitude with scientists.
I well remember his accident in 1995 when he fell from his horse. I was an active walker and mountaineer at the time and remember thinking that, had it happened to me, I would rather have died there and then than live paralysed all my life. When I broke my neck in Bolivia in 2000, one of the doctors transporting me home told my wife, Val: "Before long you will wish he had died." He was wrong and I was wrong earlier. Chris always lived in the present, setting up the foundation, writing, acting in and directing films, tirelessly harassing the Christian fundamentalists running the American government on the subject of stem cell research. Nor did he ignore the practicalities of life; his foundation gave grants to disabled people struggling to raise funds for equipment they desperately needed.
He didn't hold out for a full and dramatic recovery, but he maintained his fitness with physiotherapy and exercise so that he would be able to take advantage of anything that came along. He finally got off the ventilator he hated so much when he had a computer implant inserted in his chest to regulate his breathing.
I was approached to be involved with a film being made about him, shown in one version in America and another, by the BBC, in Britain. As it happened, I wasn't included in the final edit. However, I was shown in confidence film of the progress he had made - his recovery of sensation, his ability to take a tentative step in water, to move his arm and one or two fingers. Val and I burst into tears when we saw it, and I remember the surge of hope that went through me. It is ironic that a man as fit as he was should die as a consequence of a pressure sore becoming infected.
I can think of a number of ways to pay tribute to his memory. To fight for the right to physiotherapy in the community for anyone who is disabled in this country would be a fitting start; to help raise funds for spinal research (anyone interested should go on the web to spinal-research.org) and, perhaps most of all, by voting in the US for John Kerry in the presidential election in November so that, among very many other good reasons, stem cell research can proceed unhindered by ideological disputes in this powerhouse of science and technology.
In the eyes of so many, Reeve was the personification of Superman. In real life he was an actor trying to do serious work, an activist unafraid of the structures of power, a father and devoted husband and a friend to all of us who share his fate.
