The Reeve Legacy: Moving Forward
By Tim Gilmer
You know the story: Famous Superman actor has unthinkable accident, experiences near-death and wrestles with his will to live. Assured by his beautiful wife that she will always be there for him and that his children need him, Christopher Reeve, now a vent-dependent quad, decides he wants to live. In steps a visitor, Dr. Wise Young, while Reeve is still struggling with rehab. The spinal cord injury community needs you, says the premier SCI researcher in the world. Will you be the face of the community?
Reeve was beloved by most, resented by some, but no one can deny his influence, especially in his quest for a “cure.” What many do not appreciate, though, is the vital role of his wife, Dana, the one who championed the foundation’s Quality of Life and Paralysis Resource Center programs. It is her ongoing influence, as well as Christopher Reeve’s, that enabled the foundation to survive after the fledgling nonprofit lost both its founders in the space of less than a year.
While supporting research is still a priority, since 1999, more than $13 million has been awarded in QOL grants to more than 1,700 deserving recipients dedicated to serving the paralysis community. Following Dana’s death, an experienced nonprofit professional, Peter Wilderotter, now CEO, came aboard and guided the foundation through the economic malaise that has devastated numerous nonprofits in the past few years. He is ably supported by Joe Canose, senior vice president for Quality of Life, who has been with the Reeve Foundation for many years. Susan Howley leads the organization’s research efforts, and Maggie Goldberg manages marketing and communications. There are others, of course, too many to name.
The Reeve Foundation is still evolving, reaching deep into the paralysis community to nurture its growing grassroots base. What follows is a small sampling of stories, mostly about Reeve ambassadors, who model the mission — and the heart — of the foundation.
Life Rolls On: Jesse Billauer
By Sam Maddox
Jesse Billauer, national outreach director for the Reeve Foundation, brings his own style to the quality-of-life cause.
We’re at Ocean View High School in Huntington Beach, Calif. I can’t see any waves from the campus; maybe you can from the roof. But the GPS tells me surf city is just a few blocks down the street. Just the week before, the U.S. Open of Surfing was held here; today looks like another perfect beach day, but it’s right in the middle of WOW week, an orientation for the incoming freshman class. The kids, maybe 200 or so 14-year-olds, are herded into the school gym for a guest speaker.
Activities director Kevin Fairman tells them to settle down and to expect to be blown away by the speaker. This is the fifth time Kevin has invited Jesse Billauer to pump up his students. He told me before the crowd comes in that I’ll be able to hear a pin drop once Jesse starts. “He’ll have them in the palm of his hand.” Kevin signals for the lights to dim and runs a videotape of Diane Sawyer and the Today show.
Sawyer says the program is about brotherly love and defying odds, and inspiration. We are introduced to Jesse and his older brother Josh. Jesse is a teen athlete and up-and-coming surf king. He gets the girls, says his dad. Then tragedy: Jesse is clobbered by a wave at Zuma Beach and driven into a sand bar. “I didn’t have time to put my arms up. I went numb and felt all tingly. I knew something was wrong.”
Paralyzed. Jesse was just 17. The clip is quick to the redemption scene: Josh and Jesse start a foundation, first to support Jesse’s rehab, and then to help the spinal cord injury community. They call it Life Rolls On. Jesse decides he wants to get back on a surfboard. His surf buddies make it happen. Josh weeps, Jesse rolls on.
“And now, ladies and gentlemen, Jesse Billauer.” In the back of the gym a door bursts with light; Jesse emerges and wheels across the floor. He’s now north of 30 but he still carries a certified coast-with-the-most patina of cool, black on black with perfect tan and two-day beard stubble. He easily connects with high schoolers. “I want you all to close your eyes.” They actually do. “Now visualize your dreams. Think about how you see yourselves. Think about how you want to see yourself in a year. In five years.”
He tells them how his own dreams have flashed before his eyes each time after a traumatic event. First, at 16, when he was ejected from his car. “As I lay there on the Pacific Coast Highway I thought about that big movie I wanted to be in, or about being a pro surfer, about having a wife and kids. I told my dad when he got there, ‘Please, don’t let me be paralyzed. I’d rather be dead.'” He survived that one with broken bones, convinced of his invincibility. Six months later the wave took out his spinal cord — same dreams flashing by. Will I surf again was a more existential plea this time, but at least death no longer had any appeal. And about a month later, more dreams floating by: His rehab encouraged him to get active and play wheelchair rugby. He fell, hit his head, felt the same numb and tingly feelings as the first time. There was lots of second guessing, litigation. He came out of rehab worse off than he went in.
But this assembly isn’t about feeling sorry for Jesse. He tells them what he’s going to tell them, tells them, then tells them what he told them: “Tomorrow is not guaranteed, bad things happen to good people, never let anyone tell you your dreams can’t come true”: He was in a big movie, Step Into Liquid, got to surf at the U.S. Open, swam with sharks and rode the killer Cloudbreak waves in Fiji. He hangs out with celebrities, dates pretty girls, pilots his own 22-foot sport boat and pretty much does the things he loves to do.
No doubt, the kids got it. Jesse didn’t tell them to stay in school or wear seatbelts or be nice to their parents. He told them life is fragile, life is precious, we’re all just temporarily nondisabled and we’ll all need help someday. Doors close, doors open. “It’s up to you to make sure your dreams come true. One person can make a difference. Enjoy life.”
Jesse lives in Santa Monica, right on the Third Street Promenade, upstairs, with an ocean view. His paternal grandparents live nearby. Both Engelina and Richard Billauer survived concentration camps in Nazi Germany. They know something about dreams deferred. His grandmother’s suffering adds a layer of urgency, and inspiration, to Jesse’s message: “You can’t dwell on the small things — the traffic, whether your latte is too cold. Don’t wait until there is tragedy to tell people you love them.”
Life Rolls On began more along the lines of supporting “cure” research — much like its now-parent, the Reeve Foundation. Both organizations are currently more about active living and quality of life, with LRO emphasizing surf programs. “The cure, it’s always in the back of my mind,” says Jesse. “But I’m more about enjoying life now. I see people can focus too much on cure and it takes them away from what their reality is. I don’t follow research, but I hear about things. If there’s a breakthrough or an opportunity arises for some treatment, I know I’ll get a phone call.”
The Reeve Connection
When Jesse was in the hospital with a broken neck, he got a call from Christopher Reeve, who had joined the quad club the previous year. “He told me to keep my positive outlook.” Jesse had an audience with Reeve in a hotel suite six years later. Reeve gave his blessing to the name Life Rolls On.
LRO merged with the Reeve Foundation earlier this year. Jesse is national outreach director and that means he’ll continue to face audiences and raise awareness. He’ll help make connections and dig into his formidable Rolodex to raise money. He will also help put on events, such as the annual Night by the Ocean dinner (Oct. 17, Beverly Hills). He’ll even help out with peer-to-peer counseling if he’s asked to. “When I was first hurt, the most important part of my rehab was the people who came in to see me. These are people who’ve been through it, instead of doctors and nurses walking around.”
He says he learned about the real world and how it is to deal with it in a wheelchair. Now he’s the mentor. “I’ve done the same for others. I go in there, be myself, talk about their hopes and dreams. I tell them there’s a lot of opportunity out there. I tell them they can still do the things they love. I tell them they can still be cool.”
Sam Maddox is knowledge manager of the Christopher and Dana Reeve Foundation.
The Many Faces of Paralysis
By Tim Gilmer