To millions, Christopher Reeve was Superman on- and offscreen. The strikingly handsome 6-foot-4 actor not only played the comic book character in the beloved 1970s and ’80s films, he also had an extraordinary athletic rigor and charm that was out of this world — performing his own stunts, sailing, skiing and piloting a private plane across the Atlantic Ocean on his own (twice). So it was all the more cruelly ironic when a 1995 horseback riding accident broke the first and second vertebrae in his neck, leaving the 42-year-old star completely paralyzed from the neck down.
Over the next nine years, Christopher, with the constant support and help of his wife, Dana Reeve, vigorously pursued a cure and pushed for more treatments for spinal cord injuries. The Reeves eventually joined forces with the American Paralysis Association to create the Christopher & Dana Reeve Foundation. Christopher’s journey and work after the accident is now the subject of a new documentary, Super/Man: The Christopher Reeve Story, which will be in limited theaters on Sept. 21 and Sept. 25 through Fathom Events.
Maggie Goldberg, president and CEO of the Christopher & Dana Reeve Foundation, worked closely with the couple for several years before they died — Christopher in 2004 from complications related to his injury; and Dana in 2006 from lung cancer.
She tells Yahoo Life that Christopher wasn’t just a figurehead; he played an active role in the foundation as a fundraiser, advocate and spokesperson for the spinal cord injury community — right down to the tiny details.
“Christopher was brilliant, passionate. He was engaged,” Goldberg says. “Once, he called me — I was doing communications at the time, and he had read something that I wrote — and he’s like, ‘Oh, you missed a comma.’ I mean, he was that involved.”
The couple had “a great sense of humor,” Goldberg says, despite the gravity of Christopher’s diagnosis after the accident.
“They loved to laugh. They loved to crack jokes,” she says. “They definitely set the example of making the best of a very challenging, tragic situation. And they put their children and their family first.”
Nearly twenty years after his death at age 52, Christopher’s influence on the spinal cord injury community is still felt by hundreds of thousands of people with life-changing injuries. Here’s how Superman made a larger-than-life impact.
1. Christopher ‘put a face’ on spinal cord injuries
The Reeves “really galvanized the movement,” Goldberg recalls, bringing attention to an area of research where little had been paid before his injury. “They made spinal cord injury become a topic of conversation,” she says, “and he put a face on the injury.”
Approximately 302,000 people in the U.S. are living with a spinal cord injury, with about 18,000 new spinal cord injuries occurring every year, according to the Reeves’ foundation. Still, Christopher’s star power turned a Hollywood-size spotlight on the issue. “He really made you stop in your tracks to think about what life would be like if you could no longer breathe on your own, or move, or hug your family members, or return to work, or play piano,” Goldberg says.
He also made sure scientists and researchers remembered that lives were at stake. “His message was, you know, ‘You guys are all in your labs and working at the bench. You really need to get to know people living with spinal cord injury and hear from them directly,’” Goldberg says. “And he implored them, ‘On your way home from work, stop by a rehab facility and really understand how what you’re working on will impact humans.’”
2. The Reeves pushed for improved quality of life
A big misperception about spinal cord injuries, Goldberg explains, is that the crux of the problem is that you can’t walk; in reality, while mobility is an issue, one of the hardest aspects to grapple with is the lack of accessibility and loss of everyday conveniences and pleasures.
“It’s not a diagnosis where you progressively worsen. You go from fully able-bodied to not being able-bodied in a second, and so you’re grieving and trying to adapt to the new life,” Goldberg says. “Further complicating it is the fact that our society is not as accessible.”
Once the Reeve family settled into their “new normal,” Dana’s chief mission was to restore as many of those everyday pleasures as possible.
“She thought of things like, ‘I want Christopher to be able to attend [our son] Will’s hockey games. How does he get to the rink? How do we return to our favorite restaurant? Is it accessible?’” Goldberg says.
Dana then made it her quest to improve the quality of life for others living with spinal cord injuries. Because it had been so difficult to find answers after Christopher’s injury, she created the National Paralysis Resource Center as a “one-stop shop” for those seeking practical information on services and day-to-day life.
About 5.4 million people (or 1.7% of the population) in the U.S. reported living with some form of paralysis in 2013 — and about 28% of households with a person who is paralyzed make less than $15,000 per year, making accessibility even more challenging.
Now, a multimillion-dollar federally funded program spearheaded by Dana provides quality-of-life grants to nonprofits that help thousands of people each year.
3. He spearheaded important research for treatments … and, possibly, a cure
Decades after the Reeves’ deaths, Goldberg says a primary focus of the foundation is connecting scientists and researchers with companies that can bring products to market so that life-changing treatments are made available to patients and “not just stuck, if you will, in research labs.”
Dr. Miguel Xavier Escalón, vice chair of the Department of Rehabilitation and Human Performance for the Mount Sinai Health System in New York City, tells Yahoo Life that while research has “grown tremendously” since Christopher was first injured nearly 30 years ago, one of the most significant steps has been taken in electrical stimulation of the spinal cord itself.
“Through sending electrical impulses via implanted spinal stimulators, researchers have given lower-extremity movement back to several people with [spinal cord injuries],” Escalón says. “This technology has advanced by leaps and bounds over the last five to 10 years and represents the possibility of a cure for paralysis after spinal cord injury.”
About 20 years ago the foundation identified neurostimulation, also known as epidural stimulation, as a highly promising area of research and funded some of the earliest studies.
The foundation also became a leading investor in a medical technology company called Onward Medical, which has developed a noninvasive spinal cord stimulation system called the ArcEX system. Goldberg says it’s been proven to increase upper limb strength, function and sensation, and that they’re hoping for approval from the Food and Drug Administration later this year. If approved, it would be the first FDA-approved treatment for people living with spinal cord injury.
“If we could have something that’s FDA-approved that would give those with high-level injuries the ability to use their arms and hands, that’s independence,” Goldberg says. “Christopher used to say, if he only had one hand, he could drive a car. He could feed himself. And I don’t think that should be overlooked.”
Christopher himself was also an early proponent of stem cell research, which he called “the future of science” for its potential to help treat not only his ailments but also a host of other medical conditions.
Dr. Wise Young, the doctor who first treated Christopher after his 1995 accident, told NBC News shortly after his death that one of the biggest contributions Christopher made to the spinal cord injury community was his bold challenge to scientists to come up with solutions faster that would have a real-life impact for people.
“He imbued a sense of urgency to our field, which … really wasn’t there in 1995,” Young said. “He taught me not to be afraid. I was afraid to use the word ‘cure.’ And I think what he taught me was to be ambitious for the people and to not be afraid to try to aim for the highest possible point.”