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.
Recently a friend shaped a surfboard for me as sort of a last-hope board: very long, wide, and thick with a lot of rocker and deep concaves through the bottom. It’s designed to catch waves easily, make late drops, and be easy to paddle back out.
Today was my third day attempting to surf that board. So far I have not been able to catch an open-faced wave before it breaks. Occasionally I’ve been able catch the white water of a broken wave, slowly work to my feet, and ride the crumbly soft inside leftovers. I am by far the slowest paddler in the lineup.
I’ve been surfing for almost 25 years. Now I’m reduced to groveling for scraps. In the lineup, the people who don’t know me immediately dismiss me as a beginner. The rest occasionally give me charity waves and graciously pretend not to be bummed when I miss them. In my mind—and, to be honest, in many of my dreams at night—I’m still capable of surfing as well as ever. In reality I’m barely surfing at all.
Today when I was getting out of the water, the first thing I noticed was how unusually heavy my board felt to me. As I walked up the rocks and headed toward the long staircase up the cliff, I was literally stopped in my tracks by what I saw. A small pool of water was reflecting light onto an indentation at the bottom of the sandstone cliff.
Drips of water were falling into the pool from long, narrow streaks of vegetation on the cliff face. With each drip, the reflected light danced in electric waves across the textured wall of gray, brown, and green. The air tasted salty, charged, and clean. The sun was warm on my neck. The wind gently brushed my cheek.
The rocks looked so strong. Peaceful. Perfect. Content. Beautiful. Emotions started flowing through me, almost violently, as though layers of crust were being peeled back. As though I was being stripped of all the pain that was smothering the surfer at the core.
First I felt extreme depression, almost despair, that I was losing strength and likely the physical ability to experience things like this. Then I immediately realized that, in a way, I was becoming more like the rocks, like I was dying, loosing the ability to separate myself from the earth through movement. That was OK with me. The thought of dying and becoming a part of something so pure and beautiful felt right.
But then I realized I am already a part of those rocks. And the salty air I was breathing, the water dripping from my hair, the light reflecting off the ponds. I am literally all of that, and all of that is a part of me.
I realized surfing is not about your ability to maneuver a board, but rather it is about how completely you can experience a moment. The rest is crust.
Outside has offered me the chance to write these blogs. I choose to write without self-censor. Without intent to inspire but rather just to express. I’m writing because these thoughts are begging to be let out. Because I’m screaming within, like a captured animal slamming itself against the walls of its cage. I’m the Chief Inspiration Officer? Bullshit. I’m just like you, embracing life as an unbridled ride, as endless moments to be discovered and experienced. Stay tuned…"
Photo by Bryce Duffy