Christopher Reeve’s Free-Floating Hope

Initial reports called it “heart failure.” Some misunderstood and called it a heart attack. Then it was “complications from a pressure wound,” which gradually gave way to “blood infection.” One television anchorwoman tried to make a safe generalization that would not muddy the waters any further: “In the end,” she said, “his spinal cord injury was just too severe.”

A consensus gradually emerged that the cause of death was most likely sepsis, septic shock and organ failure [see Uncle Spine, print edition], but the question remained: How could this have happened to the one person with spinal cord injury who had the best of everything–the best medical care; the most complete personal staff; the support of a loving wife, family and friends; and few, if any, restrictions on how to pay for it all?

Most of us had come to think of Christopher Reeve as invincible–we forgot that he had been a vent-dependent quad who had barely survived the trauma of the worst possible spinal cord injury and was prone to serious infections. We thought of him as the one most likely to break all quad longevity records, maybe even stand and walk one day. He made us believe it by pure force of will. And of course there was the myth–the shadow of the cape–following him wherever he went. But his most remarkable achievement was in making something out of nothing–he created a culture of hope, perhaps as a way of coping with what he had lost–and it was contagious.

He spread hope by focusing global attention on the need for a cure for paralysis and by emphasizing what could be rather than what had not yet been, by modeling hard work and hope in whatever he attempted, and by doing all he could possibly do to raise money and encourage a hopeful approach to research, rehabilitation and quality of life issues. But contrary to his public image, his own hope had been seriously tested during the last year of his life.

The Changing Reeve
After a remarkable upswing in Reeve’s overall health and productivity that began in 1999, problems began showing up in December 2003. Reeve’s wife, Dana, in a BBC documentary filmed about a month prior to the shooting of The Brooke Ellison Story, spoke of that December as being “very, very tough.” That month, she said, “was all about the hospital and trying to get better. And at the hospital he got some more sacral wounds, which are very hard to get rid of, pressure sores, skin breakdown, and it can completely alter your quality of life, and it did for him,” she said.

Dr. John McDonald, whose work with Reeve was heralded in 2002 as contributing to a partial recovery of sensation and function, says Reeve entered the hospital in December for pneumonia and developed pressure wounds while there, and the wounds reappeared in June. Reeve himself, speaking in an October Reader’s Digest interview that took place after filming The Brooke Ellison Story, gives a more detailed account: “I’ve had three bad life-threatening infections this year. This most recent was a blood infection caused by an abrasion on my left hip that I probably picked up one day when I was on the exercise bike. It seemed benign but developed into strep. Then a lot of major organs shut down. We’re trying to figure out what’s going on. Before that one, I got a severe infection in New Orleans just a few days before shooting the movie. I was frustrated: ‘This is not fair; come on. Let’s not fall apart. I’ve come too far.'”

Reeve also indicated that not only was he plagued with recurring decubiti and infection, but that the gains he and McDonald reported in 2002 had reached a plateau. The Reader’s Digest interview gives us a glimpse of Reeve’s changing state of mind:

RD: Has there been a change in your optimism?

Reeve: Hope, to me, must be based–now knowing as much as I do–on a projection derived from solid data. But, yes, there’s been a change in my state of mind, because in May of next year it will be 10 years [since the accident], and I doubt if by that time there’s going to be a procedure suitable for me. At 52, knowing that a safe trial for me may still be years away has changed my perspective. I didn’t think it would take this long.

Reeve’s hopes must have been seriously dampened when pressure sore/infection complications began showing up in December 2003. His health had been improving for a number of years before then, after a complication-prone beginning. During the first four years of his paralysis, from 1996 through 1999, he experienced a total of 57 infections that required antibiotic treatment, mostly from urinary and pulmonary complications. Skin problems accounted for 10 infections during this period. But from 2000 through 2002, a period of intense exercise and FES activity, his total number of infections dropped to nine, none of them related to skin problems. When pressure wound infections began reappearing at the end of 2003, and continued throughout 2004, he had to have been concerned about this unexpected turn for the worse.

But it would be a mistake to think that his changing state of mind culminated in depression or any lessening of ambition or energy. On the contrary, his last year was as busy as ever, perhaps–given his recurring problems–too busy.

The Driven Reeve
One would think that recurring complications from pressure sores would have seriously curtailed Reeve’s busy schedule, especially given the time it takes to completely heal. But 2004 was a year that saw Reeve put considerable time and energy into acting and directing projects in addition to keeping his busy schedule of public appearances and speaking engagements.

His least taxing commitment was more than likely his return to WB’s Smallville as Dr. Virgil Swann–shot in a single day, Jan. 19, in New York City, not long after his December hospitalization. His most time-consuming projects were directing The Brooke Ellison Story and Yankee Liberty, which took up most of the summer. This was a time of recurring complications. “Christopher had been having problems with infections during the summer and he was also working very hard,” writes Wise Young, SCI researcher and friend of Reeve’s, on his Web site, carecure.org.

On July 9 Brooke Ellison and her mother arrived on the New Orleans set of the A&E movie project. Shooting had begun in June after Reeve’s pressure sore flare-up had caused an initial delay. But Reeve worked long hours for nearly six weeks once shooting began. “He was really so full of life and so full of energy all the time that one would never really know that there was anything wrong at all,” says Ellison. “He was really putting so much time into the project every day, getting up early and staying on the set until 7 p.m. or so and working after that. He was just so dedicated to it that you could never really tell if there was something wrong.”

It has been widely reported that The Brooke Ellison Story was Reeve’s final project. But there were others. “I know that he had a bunch of projects in the works, and down the pike I think he had three coming up,” says Ellison. “I know he had an animated film that he was directing in the next few months [after filming in New Orleans], and a couple of projects after that. And then he was promoting our movie, speaking on behalf of that.”

Yankee Liberty–to be released in 2006–was the animated film Reeve directed after The Brooke Ellison Story. Rob Kurtz, who wrote the script, is quoted in an Oct. 12 Internet article that appeared on E! Online: “Kurtz expressed his admiration of the paralyzed [director's] devotion to the film, in spite of his busy schedule promoting spinal-cord-injury research.

“‘He would work hours and hours each day,’ Kurtz told the [New Jersey] Star-Ledger. ‘He was determined to make it very special.'”

Besides these two major directing projects, Reeve also produced, directed and narrated a short video that was to have accompanied his acceptance speech for a Lifetime Achievement Award that was presented Nov. 5 as the highlight of the 2004 International Health and Medical Media Awards (the “Freddies”).

Reeve’s burst of creative energy roughly coincided with a 10-month period in which he suffered four serious infections. Was Reeve aware of the danger of repeated blood-borne infections? One can only speculate, but he was a man who understood spinal cord injury complications better than most doctors. Perhaps his turning back to his first love of acting and directing was part of a conscious decision to move away from the exhausting travel schedule that accompanied his many speaking obligations and television appearances: “I thought it would be a good thing for me to tell one really good story [Brooke's story] about a family,” he told an A&E interviewer. “The story, I think, will reach and impact more people than me giving 55 speeches or going on national TV 20 times.”

According to CRPF spokesperson Maggie Goldberg, a wound became infected about a week before Reeve’s death. There are reports that he received hospital treatment Sept. 26-27, presumably at the Northern Westchester Hospital in Mount Kisco–about 10 miles from his estate in Pound Ridge–where he returned after lapsing into a coma. Yet on Oct. 5, just days before his heart stopped, he flew to Chicago to deliver the keynote address at the Rehabilitation Institute of Chicago’s 50th Anniversary Dinner. On his last day, Oct. 9, he left a phone message for Senator Kerry, attended his son Will’s hockey game, talked with Dana on the phone, watched the Yankees game on TV with Will, and ate one of his favorite meals. “Although he mentioned that his decubitus wounds were pretty bad and that he’d probably have to stay in bed the next day,” writes Dana on the CRPF Web site, “he was not complaining.”

In the early hours of Oct. 10–after what seemed like a normal Saturday–Reeve’s heart stopped. But with no autopsy and no obvious symptoms of sepsis, there is no proof of septic shock. McDonald believes a more likely cause of heart failure could have been autonomic dysreflexia–perhaps triggered by a reaction to an antibiotic he started that day. “It’s not at all clear that it was sepsis,” he says.

The Reeve Legacy
It would be easy to conclude that Reeve was careless with his own life during his last several months. But his driven behavior during a time of health complications is more likely the result of the way he viewed himself than any disregard for his own life. Simply put, he had grown to think of himself as someone who could overcome whatever obstacles he confronted. Everything he did and said sent this message.

In 1998, when paralyzed rats regained the ability to “walk” after treatment with L1 antibodies, he saw it as evidence of a cure for human paralysis that would begin with a series of injections or an implanted pump. Other cure possibilities followed–there was always some promising procedure. When embryonic stem cells emerged as a potential “miracle” treatment, he hopped aboard that train. When the train slowed due to the sanctity of life issue, he caught a ride on the FES/treadmill express. His peculiar brand of free-floating hope–which sought out and attached itself to the most promising treatment of the day–was both a blessing and a curse.

His critics in the disability community claimed that Reeve’s comments often fed the stereotypical bias that disabled people were less than whole, and that the only way they could be made whole was to be cured of their disabilities. This especially angered those who had discovered a source of pride in disability–they bristled at the implication that they needed to be “fixed.” Others saw his overriding emphasis on cure as perpetuating the medical model of disability and ignoring the social model, which focused on everyday concerns of living and the need for societal change. To them, Reeve was shifting attention–and perhaps dollars–away from the real problems of real people with real disabilities, as if Reeve’s brand of quadriplegia were somehow not the real thing. But it was real, and over the years, quality-of-life concerns became more and more important to him.

Most people know that the Christopher Reeve Paralysis Foundation developed an international research consortium of neuroscientists and raised and distributed tens of millions of dollars for paralysis research, but few have acknowledged the steady increase in Quality of Life grants dispensed by CRPF. In 1999, the first year of the program, only 10 grants totaling $128,000 were awarded. In its second year, however, 71 grants worth $621,444 were distributed. In the third year, 2001, QL funding topped $1 million, with 104 grants being awarded. Each year has seen a dramatic increase in QL grants and dollars awarded.

Now there are two QL grant funding cycles per year. “We received 268 applications in the first cycle [of 2004] and gave away 126 grants,” says Donna Valente, Quality of Life Grants coordinator for CRPF. “For the second cycle of 2004, we have received 269 applications. I believe the amount that we award will increase, especially in the health promotion category.” Of the 126 grants awarded during the first cycle of 2004, 50 fell in the health promotion category. These grants are awarded to nonprofit organizations serving people with paralysis caused by spinal cord injuries, stroke, spina bifida, multiple sclerosis, cerebral palsy, amyotrophic lateral sclerosis and other diseases and congenital conditions. There are 10 grant categories other than health promotion.

Counting the first QL awards cycle of 2004, CRPF has given out $5.6 million to 641 recipients since the program’s inception. That amount will easily top $6 million by the end of 2004. “The importance of these grants cannot be emphasized enough,” says Valente. “They provide essential funding for programs that can be life-changing for individuals and families. The CRPF name recognition also enables organizations to leverage even small grants into additional funding–and this impact will continue to grow as the program expands.”

Reeve’s impact on the future is not only assured by his past achievements, his reputation and ongoing programs administered by CRPF; it is inextricably linked with legislation that promises substantial benefits to the disability community, especially those with paralysis. The Christopher Reeve Paralysis Act was introduced in Congress in May 2003. It was reintroduced in 2004 (HR 5213) and in October passed unanimously in the House, 418-0. The bill was thought to be headed for passage in the Senate, but an unnamed Republican senator put a hold on the bill, preventing consideration. More than likely, it will be re-introduced in 2005 and will pass. As bills go, it has strong bipartisan support, but Reeve’s outspoken advocacy of embryonic stem cell research has elicited political backlash that has slowed the bill’s progress. Ironically, the bill has nothing to do with embryonic stem cell research.

“It’s been a huge educational process on our end to get on the Hill and explain that this is not a stem cell bill–this is a research/rehabilitation/quality of life bill for people living with paralysis,” says Tricia Brooks, director of government relations for CRPF. The bill is divided into four parts: Title I–Paralysis Research–establishes research consortia modeled after CRPF’s program, only on a larger scale, utilizing the National Institutes of Health. Title II–Paralysis Rehabilitation and Care–establishes a clinical trials network to design and gather data on rehabilitation protocols. It is intended to make the case for funding by Medicare/Medicaid and the insurance industry for the latest rehabilitation practices. Title III–Quality of Life–develops programs and services to advance quality of life for persons with paralysis and other physical disabilities and provides grants to nonprofit organizations. Title IV establishes paralysis research, education and clinical care centers and consortia within the Department of Veterans Affairs.

While the bill seeks $300 million and focuses on paralysis, Brooks believes that Reeve’s decade-long advocacy of research will benefit the disability community as a whole. “I mean, he was a strong advocate for all research moving forward,” she says. “He believed the higher the water was, the more all the boats would float. We are hoping that will be the lasting legacy.”

As for the effect that Reeve’s death had on CRPF, like the rest of us, no one saw it coming. Unlike the rest of us, they’ve been getting plenty of advice lately: “I’m sure you can imagine we’ve been barraged with phone calls with what people think could have or should have been done,” says Brooks. “There is no question that pressure sores and skin breakdown are a huge secondary health condition of people living with paralysis. And there’s no question that once they get infected they are very difficult, and obviously Chris was doing what he felt he needed to do to treat the sore, but also doing what he felt he needed to do to live his life. I will tell you from someone who worked for him, he had pressure sores in the past where he’d continue to do work and he’d recovered from them, so we were all pretty stunned, not because we didn’t know he was fighting health conditions, but more because we had always known him to bounce back from them.”

Christopher Reeve will always be remembered as the man who exemplified hope, pushed back the limits of recovery and redefined what is possible in the world of spinal cord injury. In less than 10 years as a quadriplegic, he accomplished far more than most nondisabled people do in a lifetime. And while some may consider it a shame that he died before he achieved his dream of walking again, many of us know a larger truth: He began his journey with the desperate cry of wanting to take back his life, and by the time he had taken his last breath, it was clear that he had done just that–and he did it without walking a single step.

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