Superhero
Page 18
The good news was that the phrenic nerves remained intact, so the spinal cord definitely hadn’t been severed. The damage had mainly been on the left side of the cord. So in theory Chris should regain some feeling, and, said a hospital spokesperson, “The phrenic nerves, which travel through the neck and chest to the diaphragm, are indeed not disturbed, indicating that the paralyzed actor has the mechanism to breathe on his own.”
When and if that might happen remained to be seen, however.
The outpouring of good wishes was huge. The president and Mrs. Clinton sent their wishes, as did people in Hollywood and New York’s theater community, Chris’s political friends, and most of all, ordinary people from all over the world, who only knew him through his movie and television work. On June 9, Dana Morosini issued a statement to thank everyone—the hospital, doctors, nurses, but most especially the well-wishers.
“Most of [Chris’s] day is spent listening to messages from well-wishers,” she said. “I can’t begin to express how important these are to him … . He is a fighter and survivor of the first order. But this has to be the toughest challenge he has ever faced. I know it is mine. Chris needs all the positive support he can get right now and that is why he and I are so deeply grateful for the outpouring of love and concern we have received from all over the world since the accident.”
Chris’s spirits, she told the assembled journalists, were mostly good. “He has been visiting daily with the children and other family, watching hockey on TV … . He has already begun the first stages of physical and occupational therapy.”
For the first time since the fall, he was able to be in a semi-upright position, and he could eat some solid food. Air still had to be drawn into his lungs with a respirator, but he could exhale on his own.
Within a week of the operation, Chris told the doctors he had feeling in his chest, and he was able to flex the trapezius muscles in his back. Dr. Jane was pleased with his patient’s progress.
“That’s a positive sign. He is consciously moving this part of his body.”
His neck still needed to be supported in a firm brace, but when the respirator was removed Chris was able to speak. He could be pushed out into the sun in a wheelchair. Things were still far from good—just how much so was brought home to him when Will celebrated his third birthday at the hospital and all Chris could do was sit by, unable to participate, or even hug his son—but they were already beginning to get better. Dark as it all seemed sometimes, at least he was alive. The news that he was going to be a quadriplegic—unable to move either his arms or legs—didn’t come as a shock. He’d already been able to figure that out for himself. But that didn’t mean he had to accept the idea that he’d remain that way.
His spirits had been lifted by the visit of an old friend. When a man wearing scrubs, a mask, and a surgical cap entered the room, Chris assumed it was yet another doctor who’d come to take a look at him. Even the Russian accent didn’t seem too strange, until the man said,
“I’m goink to haff to, just go down, hold on … .”
At that point Chris realized who it was, “and his eyes lit up, and he started to laugh.”
It was another turning point, the return of humor.
“I had a fifty-fifty chance to live,” Chris recalled. “I was hanging upside down [in a hospital bed], and I looked and saw a blue scrub hat and yellow gown and beard and heard this Russian accent. There was Robin Williams being some insane Russian doctor. I laughed and I knew I was going to be all right.”
Robin Williams was one of Chris’s oldest friends, from their days together at Juilliard. They’d become stars at the same time, but whereas Chris had slowly had to settle for a lower level of fame, Williams had moved on from being television’s Mork to all manner of film roles, showing the full versatility of his range, dramatic and comedic, along the way. But the two had never lost touch; Chris was the godfather of one of Williams’s children. Together they’d gone out and raised hell on a couple of occasions, and now Williams was here to do anything possible to cheer up his friend.
Chris had to think completely of himself, of getting stronger, and Dana had to consider virtually everything else. With little more that the hospital could do for him, once he’d fully recovered from the operation Chris would be able to leave Charlottesville, and he’d be needing to spend many months in a rehabilitation facility, one which specialized in treating upperspinal-cord injuries. It was the next step in the recovery process. There were several recommended by the National Spinal Cord Injury Association, an organization that Chris would soon come to know intimately.
The two that seemed most promising were in New York and New Jersey. All the immediate family members lived in that area (Barbara Johnson in Princeton, New Jersey, Franklin Reeve in Connecticut, brother Ben in Martha’s Vineyard), which would make visiting, something they all considered a priority, that much easier. Of the two, Dana finally decided on the Kessler Institute for Rehabilitation in West Orange, New Jersey. It was away from the bustle of the city, but still readily accessible.
The date set for his departure was June 28. It had been an eventful month, one which had seen him stare at death and come back. The family organized everything. Already they’d begun to lobby for more money to be pumped into spinal-cord injury research. The day before Chris left the hospital, his brother was in Washington, testifying on the matter before a Senate committee. With typical Reeve thoroughness he’d researched the matter extensively, as Chris soon would himself, becoming an expert on the matter.
On June 28 Chris began his journey to West Orange. It was a tricky journey, involving more than simply moving an immobile patient. A nurse had to manually pump air into his lungs during the entire trip. A private plane picked him up at the Charlottesville airport and flew him to New Jersey, where he was transferred to an ambulance with a police escort for the short drive to the Kessler Institute, where he was finally settled, exhausted, Dana and Will by his side.
The future wasn’t going to be easy. The first, and most difficult, step had been taken, but a whole journey still lay ahead, one that would find him redefining and testing every single one of his limits. The months he’d spend in Kessler would also be expensive. At two thousand dollars a day, the cap on his insurance, which had once seemed so high, would soon seem remarkably small.
Chris, quite simply, had a simple long-term goal: He was going to walk again. Nothing was going to deter him from that, and as far as he was concerned, the purpose of his time at Kessler wasn’t to help him adjust to his new life, but to enable him to achieve what he ultimately wanted.
Initially he was restricted to his bed or a wheelchair, seeing his physician, Dr. Marcalee Sipski, every day, along with physical, speech, occupational, and respiratory therapists, all of whom worked in concert with Chris to help him overcome, or at least do all he could with, his new disability.
From the very beginning his days were highly structured. There was a breakfast of fruit at 7 A.M.—solids were making up a good portion of his diet now—followed by an hour of physical therapy, with exercises designed to strengthen the muscles in the neck and shoulders, and the therapist moving his arms and legs to prevent atrophy.
After that came occupational therapy with lessons in how to operate his new Quickie P300 electric wheelchair, a massive forty-thousand-dollar investment, which he moved by sipping or puffing air through a tube, after which came speech therapy. Or else he’d spend time on the Regis cycle, which would automatically move his legs, exercising them, and giving his entire body an aerobic workout.
In the afternoon, Dana and Chris, often accompanied by others from the family, would come and push him through the grounds.
“Christopher is very motivated and extremely sensitive to what’s going on,” Dr. Sipski commented shortly after he arrived. “When the doctors or therapists give him a task, you know he’s going to make sure he does it perfectly. If there’s an obstacle to overcome, he’s going to overcome it.” At the same time, she had to ad
mit that “I am not very optimistic” about Chris ever regaining any further muscle movement.
Dr. Craig Alexander, who was Kessler’s head of psychology, was also spending time with Chris, and after two weeks there described him as “a passionate, intelligent and confident man who strives to direct and control as much of his treatment as possible. He believes there is a purpose for everything including his present battle with disability.”
And a battle was exactly how Chris saw it, one that he could win. He was putting his competitive nature to work, this time fighting nature.
“As a kid, I was always competitive,” Chris recalled, “and I’ve always responded well to a challenge. If someone says, ‘You’ve got to try twenty repetitions of this exercise,’ that gives me the incentive to do thirty or thirty-five. You have to push.”
And throughout his time at Kessler, Chris was determined to push as much as possible. After only two weeks he was on a tilt table in the physical therapy room, turned semiupright, his first experience at anything like standing. It was used to pump up his blood pressure, which was low, given the fact that he couldn’t move. Dr. Sipski, who’d been used to seeing him either in bed or his chair, walked in.
“For the first time I had to look up,” she said. “He’s really tall and has these piercing blue eyes. He looked like what I was used to seeing in the movies.”
Chris began to refer to Sipski as “Coach,” and that was largely what she was, encouraging him in all his efforts. She wanted him to succeed, but knew that a dose of reality had to be injected into his possibly futile dreams.
“An injury like his impacts every system of the body. There are so many potential complications. It can take years to adjust.” At the same time, her job was to ensure the patients left Kessler able to function at their highest possible level, ready for whatever might come. She knew that before his accident, Chris had been hired to direct a film, a job that was still waiting, whenever he was ready to undertake it. It still seemed feasible. “I still expect him to direct a movie,” Spiski said. “I don’t see any barriers in his way.”
For himself, Chris wasn’t about to acknowledge that they even existed.
“Chris spends much of his day conducting his own brand of therapy,” Dana Morosini told reporters. He worked as much as he could for the causes he’d always supported, as hard as before the accident, and spent time with family and friends, including Robin Williams, always his manic self, who’d become a frequent visitor.
“He is achieving things that are astonishing,” Williams said, enough to show him, he felt, “the sheer force of the soul.”
One thing the staff believed possible was to enable Chris to breathe without a respirator. For many months they’d worked toward it, but it was seeming like a hopeless task. He could blow air out easily enough, but he had difficulty taking enough in.
“My doctors … had basically given up on my breathing without a respirator. But in November I said, ‘I want to try this again.’ They came to my room and I tried taking ten breaths. I averaged 80 cc of air per breath, which wouldn’t keep a parakeet alive. The next day, my motivation was very strong, and I was able to average 450 cc per breath. The doctors were stunned.”
The next day Chris was up to 560 cc. The following day he announced to the physicians that he wanted to try breathing without the respirator.
“I breathed seven minutes,” Chris said proudly. “After that, it built up rapidly. I just did it … . I’m not going to be chained to this respirator for the rest of my life.”
It was a remarkable feat, but typical of his determination. Having set himself a goal, he would do everything he could to achieve it, no matter how long it took. But there were setbacks. He experienced bad bedsores from lying prone for so long, and on one occasion a new medication sent him into anaphylactic shock, causing a worrying overnight stay in a local hospital.
Every single day Dana and Will were there to see him, spending as much time with him as they could. Chris was their priority. They both had a great deal to learn about caring for him. Eventually he’d be coming home, sooner rather than later, they hoped, and Dana would bear the brunt of his daily needs. They had a nurse living in, but even so, both she and Chris knew it wasn’t going to be easy for either of them. What they had to rely on to help them through was their love for each other and for Will.
“Our relationship has been fantastic since we first got together,” Chris told Ladies Home Journal. “But I would say this is our highest level … . We’re more focused on what really matters—the family and how far love can take you. How far commitment can take you, to help you through something like this. We draw strength from each other.”
And strength was exactly what Dana needed. Not only was she at Kessler each day, she also had to arrange for modifications of their Westchester County house. Ramps needed to be built to give him access, doors widened, any manner of things to make his life easier. The only thing that couldn’t be managed was an elevator to the second floor. Other than that, it would be ready whenever he was.
Friends came to visit. Colleagues from the Creative Coalition, people he’d worked with in theater, television, and film, all came to see him. For some it seemed a strange and unnerving experience, finding Chris this way.
“I sense them throwing glances around, being uncomfortable and uncertain. But within moments, I can see them relax. I have found no one who looks at me with pity. Any anxiety, fear, or awkwardness fades away almost immediately.”
His life and his horizons improved vastly when he received a computer that would work on voice recognition. The new software, Dragon Dictate, obeyed his commands, and let him communicate with the world outside his room by fax and E-mail. He could work on the Internet, and “I can talk to my two older kids in England, where they go to school. I ask them how their day was, and play chess with Matthew.”
It opened a door, and got him thinking beyond his immediate physical recovery. Even confined to a wheelchair for the present, there was no reason to stop doing things. Once he was strong enough there was still that movie to direct, and he could continue with his political activism. Now he had a new and much more personal cause, lobbying the government on behalf of all spinal-cord injury victims. With his name and stature, he would at least be listened to. He was, after all, a man who could get the ear of the president.
He’d done his research, and knew that $5 billion was spent each year just to keep people with spinal-cord injuries alive. If that amount were applied to research, he believed, results would quickly be forthcoming, which would end the large long-term drain of dollars on Medicaid and Medicare.
“Two hundred thousand people in the United States alone have the same problem as me,” he explained, “and a lot of them are very poor people. A lot of them are on welfare … . I’ll bet you, in my life, and maybe in the next ten, fifteen years, if the public will demand that the politicians spend that little bit of money, and make that investment, I’ll be up and walking around again.”
It was the first salvo in what would become his ongoing campaign. He wasn’t going to spend his life in a wheelchair, and he was determined that no one else should have to, either.
Every day brought a step forward of some sort or another for Chris. Sometimes it was a mental victory, being able to speak out. Other times it was more tangible and physical, like regaining some feeling in his left leg, or occasional twinges in his spine. Every little thing helped him believe there was a very real future for him, something he’d doubted when he’d first woken up in the University of Virginia Medical Center to learn he was a quadriplegic.
Since the end of May all his time had been spent in either a hospital or an institution. The farthest he’d gone was around the grounds, and during the summer even that activity had been limited, because paralysis meant his sweat glands couldn’t function, causing the danger of him literally overheating.
Soon enough, he knew, he’d be moved again, back home, and he was eager to be there. But before that
he needed a trial run in the outside world, and October 16, 1995, provided the perfect occasion. The Creative Coalition, of which Chris remained cochair, was having its annual Spotlight Award Dinner, and Robin Williams would be the honoree.
The event was being held in New York, less than an hour’s drive from Kessler, close enough to be comfortable, particularly with a therapist in constant attendance.
None of the audience was told in advance of Chris’s appearance; only the organizers knew. In case of some mishap, forcing him to cancel, it was better to keep everything secret. The meal over, the five hundred guests at the Hotel Pierre settled down for the ceremony. What they saw was Chris being wheeled onstage and up to the microphone.
As one, the audience stood and clapped. The ovation went on for five full minutes. Few had ever expected to see Chris appear in public again, and certainly no one had thought it would be so soon.
“I never knew how much love was pointed in my direction,” Chris told them. “Since my accident I think I’ve heard from every one of you. I want to thank you from the bottom of my heart. You’ve helped me turn my life around.”
He reminisced about Williams visiting him in Charlottesville, and Williams responded by announcing, “I came that day, and I’ll be back a million times. This man is my family. He’s the godfather of my son!”
It was an emotional, intense occasion, but Chris couldn’t allow it to pass without planting a thought in the minds of the people listening to him. It was another short speech, a seed to get all these influential people—names like Robert F Kennedy Jr., Barbara Walters, Susan Sarandon, and Tim Robbins—to help him work for more research into spinal-cord injuries.