Outside Magazine Reader of the Year Ryan Levinson - Shelby Stanger
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Outside Magazine Reader of the Year Ryan Levinson

This is a story I have wanted to write for years, but was too big of a wimp to write it. My fear – 500 words would never justify this athlete’s achievements. A friend told me Outside was looking for submissions for an inspirational athlete and I couldn’t think of anyone better for them to feature.

I first wrote about Ryan when I was 19 and he was on the brink of a world class kiteboarding career. After our interview and my poor attempt to kiteboard, Ryan shared his story with me. We’ve kept in touch ever since, and whenever I waiver in the water, athletics or in life, his words are the first that come to mind.

Ryan lives his life by the motto that, “Life is not a dress rehearsal, and that, “You can’t choose what happens to you, only how you respond to it.” Whenever I waiver I ALWAYS think of Levinson. Ryan charges every single day of his life.

While this is just a glimpse at Ryan’s story (Outside Mag writer Justin Nyberg wrote the intro), reading this may make you want to run 100 miles or paddle into a double overhead wave….Just warning you now.

See the full story for yourself here and check out Ryan’s website at www.RyanLevinson.com.

Outside Magazine December Cover

By: Shelby Stanger

Introducing our 2011 READER OF THE YEAR, Ryan Levinson, an athlete who competes like a champ while fighting a savage form of muscular dystrophy.

As told to Shelby Stanger

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.

5 Comments
  • Rodney Roller

    February 1, 2011 at 10:56 am

    I have had the pleasure of call Ryan my friend and have competed against him and He is a amazing person. I love you Ryan.
    Former Challenged Athlete West Coast Champ and Winner of the Dukes CAD
    Rodney Roller

  • Margaret Mueller

    February 18, 2011 at 4:57 pm

    Good for you, Ryan! I don’t like someone telling me I have limits either, or giving up the activites I’ve always enjoyed. When I got my diagnosis, I thought about how Lance Armstrong kept training after chemo treatments. I kept telling myself that if he could do it, I could keep training, too.

    I was diagnosed with FSH two years ago at 53. I had already lost a lot of my physical conditioning; my presenting symptom was neck weakness. The neurologist who diagnosed me by blood test told me ‘not to bother with physical therapy, it won’t do you any good.’ I chose to ignore him. It took a year and a half, but I regained enough neck muscle to hold my head up and look over each shoulder and use it without fatigue all day; I wear a philadelphia collar when I’m in a moving vehicle for my safety. I can’t raise my arms over my head, but I do have some shoulder strength and upper arm strength. I have lost right calf muscle, but walk very well. I have been able to stablize my hips. I have no pain at all, and can do things I couldn’t do two years ago. I’m always been careful about diet, and I respect my limits knowing when to say, ‘it’s time for me to rest.’ I travel and go to museums, shopping, cook and do things around the house and in my garden. I will keep working out because my long-term health, and my ability to enjoy doing things with my husband and family are my goals.

    My blood pressure is low, my neurologist is surprised by my fitness and strength, and my P/T Rachel W. (Phd) has my undying respect for her dedication to patient care, competence, and attentiveness to my changing condition. Whatever the future holds, I will live every day to it’s fullest.

  • Hello world!

    November 13, 2011 at 1:22 am

    […] AS TOLD TO SHELBY STANGER […]

  • Pieter Joubert

    March 16, 2013 at 8:23 am

    Hi Ryan, I am 52 years and alo have FSHD. The biggest challenge is to be treated as equals by society.
    Follow your dreams, be aspirational, never let your disability stop you and always enjoy life. Always focus on what you have and not what you don’t have!
    I am the editor of MDF Magazine and would like to publish a story of you in the next issue of our magazine. Please send me an article and pictures that we can publish.
    Best regards.
    Pieter Joubert
    Muscular Dystrophy Foundation of South Africa

    • Shelby Stanger

      March 18, 2013 at 7:31 pm

      Hey Pieter,
      Please contact Ryan at his website Ryanlevinson.com. He’s an amazing guy with a great story!