Daring to hope

Christopher Reeve was an inspiration to many as he confronted his own paralysis and advanced the cause of stem cell research.

Published October 12, 2004 2:04PM (EDT)

You were well advised to leave your pity at the door of Christopher Reeve's airy, sun-filled home, hidden amid the rolling meadows and white wooden barns of upstate New York. What struck you first, as he was steered into the room, was his commanding height: His thronelike wheelchair lifted his broad-shouldered bulk off the ground; sitting down, you found yourself tilting your head upward to look at him.

The accident's power over him was diminishing, he said, as his ventilator sucked and hissed. He no longer snapped awake in the quiet hours, forced to confront, all over again, the fact that he had no sensation from the neck down. He paid no attention as his nurse drained the contents of a tube hidden in his trouser-leg into a black bottle; he said he didn't even need to turn away when he was driven past the barn where he kept Buck, the thoroughbred horse from which he had been thrown in 1995, breaking his neck. But learning to live with his paralysis wasn't the same as resigning himself to it.

"I've still never had a dream that I'm disabled," he said. "Never." He had vowed, controversially, to walk again by the age of 50. At the time, that deadline was three weeks away. Walking by 50 had only ever been a hope, not a prediction, Reeve insisted. But what made the news of his death so acutely disorienting was the fact that, on some level, so many of us thought that, eventually -- albeit a few years behind schedule -- he might actually do it. Of course, he had always stressed that his advocacy of stem cell research wasn't a self-centered quest. Ordinary disabled people were the real superheroes, he often said, in response to the inevitable movie-themed questions. But for the rest of us, the personal narrative was too seductive to resist: Superman, brought down to earth, ultimately triumphs again through sheer force of will.

He only went so far in discouraging that kind of thinking. "I want things to happen quickly," he said recently. "I certainly want to benefit within my lifetime. I don't want to get out of this wheelchair at the age of 75 ... I'm not willing to resign myself to being an advocate for research that will benefit people only after I'm gone. I'm not that noble."

By the time he died Sunday, at age 52, and from the most cruelly peripheral of causes -- heart failure following the infection of a bedsore -- he had repeatedly astonished his doctors with motor improvements through intense physical therapy. He had regained the movement of several fingers, and some muscles in his arms, along with a degree of sensation. "It means I can feel my kids' touch," he told me when we met, a little over two years ago. "It makes all the difference in the world."

Things were moving ahead on the wider battlefront, too: With an irony that may yet come to influence the American election, Reeve slipped into a coma a day after being mentioned by John Kerry in Friday's presidential debate in support of an extension in stem cell research, a policy George W. Bush opposes.

Reeve frequently spoke of his dismay that politics had got in the way of scientific progress, but that in itself was an unavoidably political position, and he was unusually scathing in propounding it. "We've had a severe violation of the separation of church and state in the handling of what to do about this emerging technology," he said. "There are religious groups -- the Jehovah's Witnesses, I believe -- who think it's a sin to have a blood transfusion. Well, 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?" A few days after our interview, he issued a statement apologizing if he had offended Catholics. But there was no doubting the intensity of his anger.

Despite everything, though, Reeve was lucky, and he knew it: He had little difficulty affording an annual bill of 270,000 pounds to pay for his treatment and his team of assistants. His Westchester County, N.Y., estate looked like the set of some feel-good movie about wealthy rural America. It was this, in part, that provoked the accusation that he was spreading false hope among patients of more limited means. Washington Post columnist Charles Krauthammer, himself a wheelchair user, called Reeve's public pronouncements "disgracefully misleading." In Reeve's view, he wrote, "reality is a psychological crutch. His propaganda to that effect undermines those -- particularly the young and newly injured -- who are struggling to face reality, master it, and make a life for themselves from their wheelchairs." (In response, Reeve said many of his critics had been "injured for so long, and their quality of life is so poor, that they don't dare to hope.")

Reeve had had plenty of luck before his accident. Born into a comfortably off New York family, the son of a novelist and a newspaper reporter, he had sailed through school into Cornell University, and thence, with his college friend Robin Williams, to the prestigious Juilliard drama school in Manhattan. Small film roles followed, along with a part in the cheesy daytime soap opera "Love of Life." But he was still essentially an unknown when he was picked for the role that would make his career. "When I got Superman, my agent couldn't believe it," he told author David Petrou in the late 1970s. "As far as he was concerned, it was the biggest thing that could have happened. And my reaction, right off the bat, was, 'Yeah, fine. Now ... when do I start work?'" Filming Superman in London, he met his first partner, Gae Exton; they never married, but had a son and a daughter. Luck abandoned him in 1995, when his horse stopped abruptly before a jump, throwing him head-first to the ground, his arms tangled in the reins, and severing his spinal cord from his skull. For a brief period afterward, he has said, he was suicidal. "Maybe we should let me go," he recalled telling his wife, Dana Morosini, but that state of mind proved short-lived; within the year his determination was growing, and so was his anger.

Opponents of stem cell research say therapeutic cloning could lead easily to reproductive cloning, but Reeve had little time for that argument. "We often hear about the slippery slope," he told the Guardian newspaper in February. "But here in the U.S., when we lowered the voting age from 21 to 18, it didn't slide down to 12. It stopped at 18." Before Ronald Reagan's death earlier this year, Nancy Reagan communicated her own support for government-funded stem cell research to the New York Times. Additional backing from several Republican members of Congress has made things even more difficult for Bush. The president argues that his support for research on existing stem cell lines is a compromise position, but the scientific consensus is that the existing lines are too contaminated to be useful. In recent years, Reeve had changed tactics, seeking to persuade individual states to pass laws regardless of White House policy.

In his last days, Reeve seemed to be accepting that his recovery might have reached a plateau. "I'm in very good health, but it hasn't turned into an improvement in function that would really change my life," he told the BBC in a documentary that will be screened next week. The long-term effects of his life -- and the timing of his death -- on the future of spinal-cord research will remain unclear until at least after the forthcoming election. But he leaves one thing indisputable, which is that sometimes, the best form of pragmatism involves a dose of wild optimism. "I have moments of anger," Reeve said at his New York home. "But am I in despair about it? No, I'm not. Despair is a very bleak word."

By Ed Guiton


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