A good friend of mine, Shelby Stanger, wrote the following article about me for Outside Magazine.  It’s a good starting point for this blog adventure because it sums up much of what I’ve been doing the past 10+ years.  What it doesn’t explore, is the “why.”  Shelby’s article was written at the start of a year of major transition for me.  I’m constantly adjusting, learning, growing, exploring, and now sharing, openly, maybe sometimes too openly, but right now that’s how I am and right now is really all we’ve got, right?  Now, on to the blog…

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.

HAVE BOARD, WILL TRAVEL – TO THE TEVA MOUNTAIN GAMES

By Ryan Levinson

(Noa Ginella on his way to 1st place in the SUP cross.)

Last week I went to the Teva Mountain Games in Vail, Colorado, to standup paddleboard in whitewater rapids. It’s hard to explain why whitewater SUPing is so much fun, but it is a really good time. Just like surfing, mountain biking, sailing, good sex, or any other dynamic way to play, a lot of the joy comes from interacting with an ever-changing environment. In whitewater you’re always moving, even when you fall.

On my first run I spent more time in the water pinging off rocks than on my board paddling. My second run down the same four-mile course was better. I only fell once, and by the end of the week I was taking other people on their first runs, including kayaking gurus Kyle and Turin Dickman, from Outside magazine. As much as I’d like to believe my progression was due to some natural ability, it was really largely because of the incredible advice and support received from other paddlers, especially the crew from Colorado Kayak Supply and C4 Waterman.

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INTRODUCING OUR CHIEF INSPIRATION OFFICER, RYAN LEVINSON

By Ryan Levinson

In 1996, when Ryan Levinson was 24 years old, the San Diego-based athlete was diagnosed with an incurable and progressive form of muscular dystrophy known as FSHD. Doctors told him strenuous exercise would worsen his condition. He didn’t listen. Instead, the now 38-year-old continued doing what he loved: sailing, kiteboarding, diving, kayaking, paddleboarding, and surfing. Last December, we named Levinson our Reader of the Year and Chief Inspiration Officer for 2011. This is the first in an ongoing series of blogs Levinson will write as our CIO.

Sometimes I feel like I am speaking with two voices. There is the public voice that talks about how I live despite the challenges of having Muscular Dystrophy, and there is the private voice, usually kept to myself, that occasionally expresses the almost overwhelming emotional pain that comes from living with this disease. More specifically, the pain from living with the never-ending loss this disease causes.

I realize plenty of people deal with extreme loss, sometimes far more severe than mine, but I can’t speak for them. I can only share what I experience: What it is like to be a person who strives on physical activity, whose entire life, profession, education—everything—has revolved around being active, but whose body is genetically programmed to progressively whither away.

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