I read about Outside's 2011 Reader of the Year, Ryan Levinson, many months ago, but I find that I still think about him often. Some of what he said in this article has stuck with me for over a year. Outside also named Levinson its Chief Inspiration Officer for 2011, and Levinson writes a blog for the magazine. (Every link I've included in this paragraph goes to something well worth reading.)
Outside describes Levinson as "an athlete who competes like a champ while fighting a savage form of muscular dystrophy." Levinson "was diagnosed with an incurable and progressive form of muscular dystrophy called FSHD...which slowly weakens and destroys muscle cells and tissue." Outside goes on to explain that "[d]octors told Levinson to stop strenuous exercise, believing the physical effort would speed the deterioration." Levinson did the opposite, choosing instead to continue his participation in extreme physical activities, and this decision has shown doctors and others diagnosed with FSHD that "being active didn't increase muscle loss any more than if [he] just sat around."
As I thought about what to talk about this week in my yoga classes, I kept coming back to Levinson and what he's going through and how he seems to be handling it. I want to share some of his words with my students, especially the following:
You can't choose what happens to you, but you can choose how you respond to it...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.
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.
But I also don't want to oversimplify his message. Levinson talks in this blog post about how sometimes he feels like he speaks 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.
I'm including all of the above because it's awkward for me to write about Levinson. I don't know him, and, as I said above, I don't want to oversimplify what he's going through or how he deals with it. I want to respect him and his message and let him share it himself. But I also want to spread his message and his story. He has had a substantial impact on me despite the fact I've only read this little bit about him, and I'm sure I'm not alone in that. I've written before about having gratitude for your body, and what I've learned from Levinson has helped inform that.