“Muscular dystrophy is something I might have,” Levinson said. “But it doesn’t define who I am.”
Ryan Levinson, of San Diego California, was diagnosed with Fascioscapulohumeral muscular dystrophy (FSHD) in 1996. Though he suffers from muscle loss typical of most people with FSHD, and can no longer hold up his arms, do a sit up, push up, or stand on his toes, Ryan has been a dedicated, world-class athlete and is about to set out on a sailing trip around the world.
After his diagnosis, Ryan’s doctors recommended that he “take it easy” to slow the effects of the disease’s primary symptom: muscle deterioration. He didn’t listen. Instead, Ryan chose to define his own physical limits, all while redefining life as a person with disabilities.
Up to this point, Ryan had competed in athletic competitions including triathlons, paddleboard races, and sailing competitions. He is a former US champion for sailing and a former member of the US National sailing team. While this kind of intense physical activity can potentially lead to a more rapid loss of muscle function, Ryan is a true believer in the importance of living an active life.
Now, Ryan is looking to embark on his next big adventure: sailing across the open ocean with the love of his life, his wife Nicole. Their trip around the world will start this December as they depart from San Diego in the pursuit of the Mexican shoreline on Naoma, a 38-foot-long sailboat. The adventurous couple will spend a few months exploring Mexico and the Sea of Cortez before crossing the ocean to the Marquesas Islands in French Polynesia.
“I’ve been sailing and enjoying ocean sports my entire life, but always relatively near shore,” says Ryan. “I ride waves but have never seen where they originate. I’ve always dreamt of crossing oceans so when a boat was offered to us we jumped at the opportunity to make the dreams come true.”
In preparation for the trip, special additions have been made to make Naoma’s trip easier including the addition of an autopilot, radar system, long distance radios, and a machine that is able to convert ocean water into drinking water.
Ryan has taken courses in navigation, offshore survival, firefighting, and is an Emergency Medical Technician. Even with his extensive experience, Ryan has had to learn a lot of new skills such as diesel engine mechanics, electrical repair, boat rigging, fiberglass repair, and celestial navigation. However, the biggest challenge that remains is staying focused and fully committed to the trip.
“When you’re weeks away from the nearest human being it’s important to be as self-sufficient as possible. Knowing how to take care of ourselves despite challenges is a feeling of independence, and something many of ‘us’ with FSH can relate to even when not sailing across an ocean,” says Ryan.
Levinson thrives off of his ability to take the hand that fate has dealt him and still manage to come out on top. His extremely positive attitude, coupled with yoga and meditation, has allowed him to live his life the way he sees fit. He is a shining success story for those diagnosed with FSH who are looking to thrive and pursue their own passions despite the disease.
In response to a question asked about why it is so important for him to go on this trip, Levinson said, “Most of us will eventually lose physical ability. We’re all impermanent, something that is a good reminder for all of us, not just those with FSHD. Having a word associated with the changes to my body does not change who I am. I am in control. Sure I did not choose to have FSHD, but I can choose the way I respond. I can adapt. I can accept. And I can sail.”
Ryan is re-defining what it means to be diagnosed with FSHD and showing that, with a little hard work and determination, one’s possibilities are limitless. Whether that be to write a novel, run a marathon, or sail around the world, Ryan Levinson is living proof that the only muscle that matters, is the heart.
Watch a video about Ryan’s trip:
Read the San Diego Downtown News’s story about Ryan here: San Diego Downtown news: Around the world in ___ days
To follow Ryan and Nicole’s journey, you can visit their blog or Facebook page at www.TwoAfloat.com or Facebook.com/TwoAfloat.
I love this story.
Hope it went well
Actually I’d say the only muscle that matters is the brain.
Hi Suze – Thanks! Yes, it is still going well for the most part. Currently in Tahiti. – Ryan