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.
For people with diseases like FSHD, there is no sudden loss or traumatic event followed by a period of some recovery. No matter how much I train, how well I eat, what medications I take—no matter what, until they invent a cure, I will continue to loose muscle, and therefore the ability to experience many of the activities I love. Activities like surfing.