Struggling to Take One Step Forward

"Every morning I wake up and worry about the timeline. I feel like a prisoner not knowing if he will make parole, but trying to be a model prisoner so that the parole board will be lenient. Unfortunately, we really are prisoners of money, or rather the lack of money." That is how actor and activist Christopher Reeve described his condition four years ago, when he met with the editors of this magazine to discuss research in spinal cord injuries, the work of his Christopher Reeve Paralysis Foundation, and, of course, the thing that made him truly remarkable: his brave, inspiring hopes.

Patrick Clinton

The timeline ran out for Reeve last month, and his death prompted an extraordinary outpouring of emotion around the world. Reeve had done something that many of us who communicate about health issues try in vain to accomplish: He enlarged the story of his personal tragedy so that it included not just his own pain but also the medical science behind it, and he told that story often and well. He pointed people toward solutions and made them understand the cost of delay. He made people both understand more and care more.

It didn't hurt, of course, that he had played the role of Superman on-screen. In part, that bitter irony gave him more time in the headlines. What editor would turn down the chance to talk about Superman in a wheelchair? (And, indeed, what reporter did?) What reporter would turn down the follow-up story of a man who becomes a greater hero in the wheelchair than when he could fly?

I think that irony contained a truth, though. To say that Christopher Reeve could walk, and that after his injury he couldn't—that's literally true. But it doesn't capture the horror of his injury.

To see Reeve in a wheelchair and to remember him in graceful, impossible cinematic flight—that is what paralysis means; that's how far he fell when he fell from his horse. For millions of people, Reeve brought the point home unforgettably.

Let's leave the last word to the man himself, in a passage from the interview that appeared in this magazine in February 2001:

"In this country, we are able to meet crises head on simply by using our intelligence and resources. There's one example to which I refer all the time—the Apollo 13 mission to the moon. As the crew was on their way back to earth, CO₂ levels in the cabin were building to a very dangerous level. It finally got to the point where the astronauts only had 30 minutes to live. Engineers on the ground had nothing on their checklist that covered that problem—nothing in the manuals. So they brought out cardboard boxes, duct tape, and other improvised materials, communicated the instructions to the astronauts and saved their lives.

"That is an example of American excellence in coping with an emergency. If we were to think of the suffering of the millions of people who have Alzheimer's, Parkinson's, MS, or spinal cord injuries as an emergency of the same magnitude, the whole landscape would change.

"Sometimes researchers become obsessed with doing an elegant study that does not really address the needs of a human being. I often urge them on their way home at night to go by the rehab center at a nearby university and spend ten minutes watching fellow human beings struggling to move a finger or to take one step forward. If they would do this, I think that their sense of urgency would intensify."