Muscular dystrophy, meet standup paddling
Since he was a boy, Ryan Levinson had lived for the singular feeling of paddling into a wave, popping to his feet and accelerating down a steep, clean face. Then, 14 years ago, the lifelong surfer was diagnosed with an incurable, untreatable, muscle-wasting disorder called facioscapulohumeral muscular dystrophy (FSHD). His doctors told him to forget about surfing.
Levinson was 24 and pursuing a recreation administration degree at San Diego State University when he was diagnosed. A competitive triathlete, surfer and waterman, his goal had been to spend his life sharing his love of the ocean with others. His doctors told him it was time to let go of that dream. The disease is incurable, they said, and strenuous activity would only accelerate its progress.
Levinson rejected that advice out of hand, spending the months and years following his diagnosis surfing voraciously in Fiji and Hawaii. He wondered how something that made him feel so good could be harmful. Levinson eventually proved the doctors wrong—surfing actually slowed the disease’s relentless march—and his example helped change the way doctors advise people with FSHD to live their lives.
But all along, he knew the disease would catch up to him. It was inevitable. Eventually, he lost his ability to paddle out on a surfboard. His strength disappeared like those south swells he’d spent so much time chasing in his youth. Today, the once powerful athlete has to rely on his wits instead of his brawn. “I can’t do a push-up, I can’t lift my arms over my shoulders and I can’t do a sit-up,” he says. With his shirt on or wearing a wetsuit, you’d never know Levinson had a disease. But when he strips down, you can see his chest and abdominal muscles are gone, his shoulders round forward, his arm muscles are atrophied, and his right calf is significantly smaller than his left.
Levinson has never let the disease keep him from the water. He competed in bodyboarding, raced triathlons and worked in ocean rescue. But he longed to stand and surf, to ride waves as effortlessly as he once had. Enter standup paddling. Levinson discovered the sport three years ago: “By utilizing my body weight, leaning on the paddle, and using my surfing background, I was able to ride waves again.
The sport’s culture of inclusivity has helped him immensely. “There’s a place for all of us—young, old, missing a limb or with FSHD—especially when compared to other forms of surfing,” he says.
The sport has even gotten his competitive juices flowing again (he competed in the 2008 Battle of the Paddle California). But at some point in the not-so-distant future, this invasive disease will render his muscles useless. He won’t be able to smile or even close his eyes. But his love of the ocean will always burn bright because of the freedom standup paddling allows him. “One day, maybe I’ll be out there lying on my stomach holding my paddle in my teeth,” Levinson says. “But I’ll still be out in the water.” — Shelby Stanger