Somewhere in Heaven: The Remarkable Love Story of Dana and Christopher Reeve (17 page)

Reaching the moon was one thing, but marshaling the kind of support—and cash—that would be needed for research to “cure” spinal cord injuries by regenerating cells was quite another. At Kessler, Chris was visited by some of the leading experts and ac- tivists in the field—most notably by pioneer researcher Dr. Wise Young of New York University–Bellevue Medical Center and Henry Steifel, chairman of the American Paralysis Association.

What was needed, they all agreed, was a recognizable face to put on the problem—someone to lead the fight. “What they need,” Dana told Chris, “is Superman.”

Whatever his other achievements on screen, Chris realized full well that the moviegoing public—not just here but around the world—identified him as the Man of Steel. “Not a bad thing,

Toph,” Dana reminded him, “to be loved by millions of people for being a superhero.” She also pointed out that he had a friend in the White House; Chris had campaigned actively for Bill Clin- ton in 1992, and the two men had spoken on the phone several times since the accident. Over the years, the Reeves had also forged friendships with several senators and congressmen as they crusaded on behalf of the National Endowment for the Human- ities and the environment.

“Maybe I can do something, Dana,” he said. “Maybe this is the one way I can make sense of all this.” Chris picked up the gaunt- let at the American Paralysis Association’s annual fund-raising dinner at New York’s Waldorf Astoria Hotel in early November. Not only did he prevail upon his pal Paul Newman to host the event, but he gave the keynote speech. Its theme drew on the parallels Dana saw between JFK’s pledge to put a man on the moon and efforts to treat paralysis. “This time,” Chris declared, “our mission is the conquest of
inner space
—the brain and cen- tral nervous system.”

Just so there was no doubt about what his personal goals were, Chris reiterated his desire to be walking by age fifty. “That’s just seven years from now,” he quipped, “so we better get cracking.” The evening brought in $985,000—more than three times the record for any previous APA fund-raiser. By the end of the month, Chris was asked to join the organization’s board of

directors—as its chairman.

Before agreeing to take on this daunting new responsibility, Chris talked it over with Dana. “Do I really want to be the poster boy for spinal cord injuries?” he asked her bluntly. “I’ve got you and the kids to think of.”

She reassured him that she and the children would be fine with whatever he chose to do. But Dana also made it clear where she stood on the issue. After reeling off the names of sev- eral of the patients he had befriended at Kessler, she asked if he thought he could really make a difference in any of their lives. “I think you can,” she told him. “But of course it’s all up to you.”

In truth, it had taken Dana a considerable amount of time and effort to get Chris to this place. “Dana was the daughter of a physician,” Dr. Kirshblum said. “She saw the handwriting on the wall early on. She never babied him or treated him as disabled, but she tried to make it as easy as possible for him to come to terms with his new reality. Her mind-set allowed her to see the bigger picture, even before he did.”

“Dana saw around the corner first,” agreed Peter Kiernan. “She thought,
All I have to do is kick the can down the road a little bit before we face the long road ahead.
Dana lovingly guided Chris to this place.” Added Kirshblum: “The overarching feeling was that he was going to make his mark in a bigger way—that he had something to do beyond moving his hands or legs. She realized far earlier than he did what their role would be in the world. That is why she didn’t crack.”

Chris accepted the challenge. In the coming weeks he studied not only the specifics of his own particular injury, but everything he could get his hands on regarding the broad spectrum of spinal cord research. He was stunned to learn that $8.7 billion was be- ing spent each year just to keep spinal cord injury victims alive, and that by adding a meager $40 million per year to research, scientists believed they could make significant progress.

In much the same way polio victim FDR launched the gov- ernment war on polio in the 1940s that eventually led to a vac- cine, Chris could lead the fight for ways to repair spinal cord injuries. There would be a huge difference in their approaches: While Roosevelt was rarely photographed in his wheelchair, Chris would seek to raise public awareness by never concealing his condition from the public.

First, however, there were more obstacles to overcome. Not content to be totally dependent on the ventilator, Chris managed in a matter of three days—with Dana in the wings cheering him on—to raise the output of his lungs tenfold. Soon he would be able to breathe on his own for as long as half an hour.

Delighted with his progress, Chris’s doctors gave him permis- sion to spend Thanksgiving with his family in Bedford. On the ride up from New Jersey with Chuck, one of Reeve’s favorite aides, Chris and Dana chatted excitedly about who would be there, what Will was up to, and simply how great it was to see the old homestead.

As the van pulled up the long, fence-lined driveway to his house, however, Chris suddenly became emotional. While the rest of the family waited to greet them at the front door, Dana and Chris remained in the van for twenty minutes; she held him in her arms as they both wept. “It’s OK,” she said, trying to comfort him. “It’s OK. You’re home now. You’re finally home.”

“There was a Rip Van Winkle effect,” Chris later said of that moment. “I had been away for so long, and here I was, home again, but under very different circumstances. I couldn’t even walk up the steps . . . Things would never be the same.”

Once they pulled themselves together, Chris and Dana were

warmly greeted by a dozen Reeves and Morosinis. But this home- coming was far from joyful. Because the house had yet to be out- fitted with ramps and wider doorways, Chris spent most of the day trapped in the living room. He did not like having to ask family members to help every time he needed something, and when it came time to eat, he felt self-conscious about having to be liter- ally spoon-fed turkey and mashed potatoes by his wife.

There was one moment, however, that made the visit worth- while. It had always been a Reeve family tradition to go around the table and have each person talk about the things that person was most thankful for. Out of deference to Chris, no one men- tioned that they were thankful for their good health. Instead, they spoke about how grateful they were for their spouses and their chil- dren. To this, Chris and Dana added their gratitude for the doc- tors, staff, and the patients at Kessler, and the thousands of strangers who had written letters of support. Will topped them all. When asked what he was most grateful for, he answered with a single word: “Dad.”

Nevertheless, Chris was angry and depressed when he was loaded back into his van at five-thirty for the trip back to Kessler. He wanted to stay overnight, but his insurance company refused to allow it—unless, of course, he wanted to absorb the $1,300 per day cost himself.

Not surprisingly, the cost to the Reeves of caring for Chris would prove to be nothing less than staggering. First, Dana had to make sure that both their Bedford home and the house in Williamstown were outfitted with special ramps, and that door- ways were widened for wheelchair access.

Making these changes
inside
their sprawling Bedford home was

one thing. But when Dana said she wanted to install a ramp lead- ing up to their front door, Chris refused. “No way,” he said. “I don’t want it to look like a disabled person lives here!”

Dana cocked her head. “Hello?” she replied. “A disabled per- son
does
live here!”

The argument dragged on for weeks. “I wouldn’t back down on that one, and he was just as stubborn,” she remembered. “I think it was the final thing of Chris admitting that he was disabled.”

Finally, Dana showed Chris a plan for the ramp that he could accept—a gently sloping incline made of slate and lined with flower boxes. When he finally saw how the finished project ac- tually enhanced the exterior of the house, Chris gushed, “Oh, it’s gorgeous!”

Renovating the house was only half the equation. Dana also put herself in charge of hiring home-care nurses, as well as aides to lift Chris out of bed and into his wheelchair—and vice versa. Not that she wasn’t capable of handling much of the job on her own. “Dana learned everything those nurses do,” said Barbara Walters. “She knows how to move him, to change him—she can do everything now.” Another friend, longtime New Jersey Shakespeare Festival director Bonnie Monte, agreed that Chris was “so lucky to have her”—although Monte conceded that Dana routinely joked “about the media portraying her as ‘St. Dana.’ But she doesn’t want to be that. She says, ‘I am just a woman whose husband fell off a horse, and I’m going to take care of him. That’s what you do.’ ” Still, Chris and Dana made a decision that would turn out to be the key to sustaining their marriage. “I can’t be your nurse and I won’t be your mother,” Dana said. “If this is going to work, I

have got to be just one thing: your wife.” It was a valuable piece of advice Chris had already received from Craig Alexander and other psychologists at Kessler; too many marriages had collapsed under the stress of having one partner bear all the caretaking re- sponsibilities.

“I could easily see how this could break up a rocky mar- riage,” Dana later told her friend Liz Smith. “You’d say, ‘Forget it. I can’t take it.’ Because it’s a burden. There a lot about this that’s a burden.”

At times, friends and colleagues seemed to forget just how much of the burden Dana shouldered. “As a caretaker she was unbelievable,” Chris’s literary agent Dan Strone said. “People would always walk up to Dana and the first thing they would ask is ‘How’s Chris?’ They might then ask about how Dana was feel- ing, but you got the sense that her welfare was always secondary. That must have been hard on her.”

Yet from the beginning, Chris pointed out, “Dana never flinched from our commitment—not once . . . When you have an accident like this, it magnifies your situation. If you had a bad marriage before, it’s going to get worse. If you have a wonderful marriage, it’s going to get even better.”

The person who was most surprised by Dana’s strength was Dana herself. “Chris is ten years older than me and in subtle ways
he
took care of
me,
” she mused. When he was hospitalized, Dana said, “suddenly I was in charge. He’s still my mentor in many ways, but what’s nice is I grew up in his eyes, too. I became his equal in a more profound way than ever before. Now he comes to me for advice as much as I go to him. It’s created a stronger partnership and deepened the bond between us.”

As much as he depended on Dana’s love, support, and, fre- quently, her growing expertise as a caretaker, Chris was deter- mined that she not give her life solely over to him. “It’s already been so trying for Dana,” he told a former Juilliard classmate. “She’s had to give up so much . . . I want her to have a career, to have her own life. She’s terrific, but she’s a human being. I don’t want her resenting me.”

One of the burdens they both had to face was the sheer cost of keeping Chris alive—more than $400,000 annually (it would soon rise to over $550,000 per year). With a lifetime cap on his insurance of $1.2 million, it looked at the time as if Chris’s in- surance would run out in three years. And because of his spinal cord injury, he would be prevented from obtaining insurance else- where. Dana had one word to describe the prospect of having to somehow bear the cost of caring for Chris: “Terrifying.”

A possible solution, not only for the Reeves but for every Amer- ican facing a catastrophic illness, was offered by Vermont senator James Jeffords. The senator wanted to add an amendment to the Kennedy-Kassebaum health bill that would require insurance companies to raise the lifetime cap from $1 million to $10 million. When Jeffords called asking if he would support the measure, Chris promptly dictated a letter to every senator urging them to pass the amendment. (It was narrowly defeated a month later.)

In the meantime, Chris, who had earned millions as an actor, would have to go to work to make sure his medical bills didn’t force his family into bankruptcy. The $4.25 million book deal with Random House was an important first step in the right di- rection, but Dana still looked ahead to a financial future that to her seemed nothing short of “scary.”

On December 15, 1995, Chris and Dana finally left Kessler and moved home to Bedford to begin their new life with Will. Once again, Chris became so emotional as they pulled up to the house that he had to pause with Dana in the car for a few moments be- fore gathering up the courage to go inside.

Since the house had yet to be modified, Chris knew he would be restricted to the ground floor; the dining room was turned into his bedroom, with a single bed alongside for Dana to sleep on. However, Chris found the difficulty of even moving from one room to the next irksome. “There were steps up to the dining room and down to the living room, and thresholds everywhere,” he later said. “I couldn’t move ten feet without it being a big pro- duction. I always feel like I’m putting people out, so naturally I spent the first few weeks more or less constantly apologizing.”

Williamstown was altogether different. Since the renovations had already been finished, Chris could use his sip-and-puff wheelchair to move around the house relatively unencumbered. As he had done at Kessler, Will often climbed on his dad’s lap and urged him on as they careened down hallways and across rooms in Chris’s Quickie P300. “He treats it,” Chris told Dana, “like his personal go-cart.” Nor was Will reluctant to burst into their tem- porary bedroom any time of the day or night. At five-thirty one morning, he burst through the doors and flapped his arms furi- ously as he spun around the room. “Look!” said the three-year- old. “I’m a hummingbird!”

When family and friends came to visit the Reeves in Bedford, they were surprised to find how smoothly things ran—thanks to Dana. “Dana was a believer in routine and structure,” her older sister, Deborah, said. Conversely, Dana’s younger sister, Adrienne,