Ryan Levinson knew something was going wrong with his body. In 1990, he was 18 and a promising cyclist—competing on an elite development squad with the likes of George Hincapie and Jonas Carney. But his performances began falling off, and one of his calf muscles seemed to be shriveling. "I thought it was an imbalance in my training," he says.
It took six years of doctors' appointments and tests before Levinson was diagnosed with an incurable and progressive form of muscular dystrophy called FSHD (facioscapulohumeral muscular dystrophy). The most prevalent type of muscular dystrophy, FSHD slowly weakens and destroys muscle cells and tissue. Doctors told Levinson to stop strenuous exercise, believing the physical effort would speed the deterioration. Levinson chose to prove them wrong. He postponed working toward his degree in outdoor recreation at San Diego State University and continued a binge of sports and adventures—including surfing, kiteboarding, diving, kayaking, and sailing—that has now lasted 15 years.
"You can't choose what happens to you, but you can choose how you respond to it," says the San Diego–based 38-year-old. "I thought, if I'm going to lose these muscles, and all I risk is losing them faster, then I'm not going to quit doing what I love."
In 2006, Levinson, an Emergency Medical Technician with San Diego Medical Services, completed the grueling off-road triathlon course at the Xterra World Championship in Hawaii, which entailed a one-mile open-water swim, a trail ride up and down 10,023-foot Haleakala, and a seven-mile trail run. This year alone, he won the stand-up paddleboard division for challenged athletes in the Hanohano-Huki Ocean Challenge in San Diego; took third place in the challenged-athlete division of the Long Beach to Catalina and Back personal-watercraft race; made the semifinals in his age group in the World Bodysurfing Championships; and was a first-place finisher in the highly competitive challenged-athlete surf contest at Duke's OceanFest at Waikiki Beach. "People think 'challenged' means slow guys who get a hug afterward," Levinson says. "These are guys who broke their neck at Pipeline or got their arm bitten off by a tiger shark. They rip."
His accomplishments are all the more impressive when you consider that his biceps are as thin as his forearms. (His shoulder muscles have grown larger to compensate.) He has almost no muscle in his chest, and his belly bulges out because there is little remaining of his abs. His legs are thinning, and his pelvis jostles around after he runs a quarter-mile, lacking the muscles to stabilize it. He can't lift his right arm over his shoulder, do a push-up, sit-up, or pull-up, and it hurts to hold the phone to his ear.
But that hasn't stopped him. Despite failing several times to qualify for the San Diego Lifeguard Academy—his swim times on flatwater couldn't meet academy standards—Levinson performed the grueling physical challenges and completed the 39th academy last spring, after being voted Most Inspirational Recruit. He's been on the prestigious water-safety patrol for California's Mavericks Surf contest and Mexico's Todos Santos Big Wave Event.
Along the way, he's opened doors to triathlons and other races for physically challenged athletes. "When I was diagnosed, I looked around the Internet for resources for people like me, and all I saw was atrophy and sorrow. So I decided I would be that guy." Here's more, in his own words:
"DOCTORS TOLD ME I would accelerate my muscle loss by being active, but it turns out being active didn't increase muscle loss any more than if I just sat around. That was pivotal, because that changed how a lot of doctors tell people with FSHD how to live their lives. It's a good feeling, knowing my efforts give people hope.
PEOPLE GET STUCK thinking there's only one way to do something, but it's incredible what can be accomplished simply by modifying equipment or technique, whether or not you have a disability. When I'm operating a rescue watercraft for an event, or I'm on the ambulance at work, the people I help don't know I have FSHD; they're just glad someone is there.
ANYONE WHO OVERTRAINS, under-rests, eats poorly, or overstresses will physically break down. With me it's just hyperexaggerated. I train hard, but I train smart. I do yogalike stretches for an hour every morning to help mitigate pain that muscle imbalances put on my joints and connective tissue, and I continuously have to adapt to ongoing muscle loss. Certain movements can cause intense pain no matter what I do. Staying active and loose helps a lot, as does meditation.
A COMBINATION OF THINGS drive me: a sense of duty, love for my wife, being able to help other people, the fact that even pain is an experience in itself.
My FSHD ISN'T something I need to outrun. It's a part of me, and I own it. Yeah, I'd be stoked if there were a cure, but that hasn't happened yet, so I live every day with a deep passion that comes from loving what I do and knowing that it will be increasingly challenging to do it. When you think about it, that's true for everyone. This is not a dress rehearsal. This is life.