In the home gym that was once a two-car garage but is now carpeted and freshly painted, there is a cushioned board known as a tilt table. A quadriplegic can be strapped onto it and swiveled upright to about 75 degrees, to reacquaint his feet with the weight of his dead limbs. “If you don’t keep working on your body, muscles atrophy,” the man who had the gym built said.
“Bones become brittle and unable to take weight. All of this is in preparation for walking, of course.”
Well, yes, at least in the mind of Christopher Reeve, who sees certain success where others might find only doubts. He believes there will be a cure for his paralysis, and in anticipation of that day, when he plans to rise out of the wheelchair he now must steer by blowing into a tube, he is keeping fit with physical therapy.
Since he broke his neck in a horseback-riding accident nearly a year ago, Reeve has become perhaps the most visible quadriplegic ever. His desire to define himself not as a patient but as a person has carried him to an emotional Oscar-night appearance, and recently has led him into a health-insurance-reform fight on Capitol Hill, where a measure he has lobbied for was introduced in the Senate on Thursday.
“Yes, it was terrible what happened to me,” Reeve said in the sunny exercise room. “But why should I be exempt? I had one very unlucky and unpredictable moment. The choice is whether to wallow in self-pity and musings about the past or to take a pro-active stance about the future.”
He had steered his wheelchair close to a window and adjusted it to a semi-reclining position, as though it were a high-tech Barcalounger. His fingernails were carefully manicured, but his hair seemed unkempt, perhaps because he cannot fit into a shower at home and has had to rely on sponge baths.
Reeve, his wife, Dana, and their 3-year-old son, Will, live in a contemporary shingle-sided farmhouse in this woodsy suburb. Gradually the house is being refitted with steel ramps and wider doors to meet his needs. Since there is no elevator to the second floor, he has been sleeping in the living room. He hopes to begin work soon on a wheelchair-friendly wing.
Only a few years ago, a patient like Reeve would have lived out his days in a nursing home. But now, thanks in large part to a portable ventilator that fits behind his wheelchair, he is able to live at home. He calls himself “a vent-dependent C2 quad,” meaning that he broke the second cervical vertebra.
He said he still needs round-the-clock nursing care in case his ventilator fails - as it did twice the night before. He, his doctor and his wife were drawn into a battle royal with his insurance company when it refused at first to pay for the nurses, he said. “They said my wife can just stay home and do it,” he said. “I tried to stay out of it, but finally I called and said, ‘Think about how unfair it is to expect my wife to stay home 24 hours a day.’ ” The insurer, which he declined to name, relented.
Reeve’s life now is enormously complex. To get him to the Oscars, two months of meticulous planning were required. What worried him most was the risk that once on stage before a worldwide audience, his arms or legs might violently spasm.
“My doctor said, ‘If you spasm it’s only human, it’ll make people aware of what can happen to spinal-cord victims,’ ” Reeve said. “But it was not going to make me happy. It would make people feel sorry for me.”
As he rolled out of his dressingroom door, a bump triggered a spasm. Reeve flopped over at the waist and his arms and legs were left hanging. Aides repositioned him, and he went on without incident.
“I sort of willed myself to not have anything go wrong,” he said.
He appeared that night before millions as he does in his home, his blue eyes and square jaw as lively as in the movies, but attached to a body as immobile as marble.
Before the accident, Reeve had helped to found the Creative Coalition, a social advocacy group. He was also one of the most persistent celebrity lobbyists defending the National Endowment for the Arts.
Now, he has turned to speaking on behalf of spinal-injury patients.
He is on the board of the American Paralysis Association, which raises money for research. On May 13 he will be the host at a reception in Washington for another group promoting research, the Dana Alliance for Brain Initiatives. The following day he hopes to meet with President Clinton.
Last month he sent a letter to all 50 U.S. senators asking for support on a health-care issue he became aware of while he was a patient at the Kessler Institute for Rehabilitation in New Jersey. For the first time, his wife read the fine print on his health insurance policy, which he had bought through a union when he was a television actor, and learned that he had a lifetime cap of $1.2 million in benefits. With his care costing $400,000 a year, his benefits were suddenly inadequate.
He was not alone. About 60 percent of employer-sponsored health plans have lifetime caps, he learned, with $1 million the industry standard. Each year about 1,500 people exhaust their benefits with little choice but to spend their assets until, impoverished, they turn to Medicaid.
“Every day much of the discussion in the halls of Kessler would be about insurance,” Reeve said. A paralyzed construction worker had to sell his house, he said. Others faced invading the money they had saved for their children’s educations.
In his letter to lawmakers, Reeve asked for support for a proposal by Sen. James H. Jeffords, R-Vt., to raise lifetime caps to $10 million. The measure, which Jeffords introduced during a floor debate Thursday, is opposed by insurance companies and employers’ groups, who say it will amount to a costly shackle on business.
“It’s simply inaccurate in my opinion that employers can’t afford it,” Reeve said. “It would not be a hardship to them economically, and it would be the right thing to do.”
But even supporters of the $10 million cap admit that, because of Senate politics, their cause is a long shot.
Reeve said that once his primary insurance policy runs out in two years, he has another policy that should last for three more years.
“That’s a total of five,” he said. “I’m expecting that within five years, if we get the funding, I’ll be up and around. I’m not kidding. I really believe that.”