Por Dave Fidlin

Local sailing enthusiast embarks on his greatest journey

For most of the next year, San Diegan Ryan Levinson will live out of a 38-foot-long sailboat, rather than a 1,900-square-foot home.

The life-changing scenario is just the latest adventure for the 42-year-old athlete, who was diagnosed with a rare condition, fascioscapulohumeral muscular dystrophy, or FSHD, in 1996. Muscle deterioration is the primary symptom for persons with FSHD.

When Levinson first received the diagnosis, doctors urged him to ditch athletic activities — a tall order for a person who has been active from the get-go. Levinson’s lengthy list of competitive events at the time included sailing.

In the nearly two decades since that fateful day, Levinson has slowed down — but not stopped — as FSHD has progressed. While he can no longer hold up his arms, perform push-ups or sit-ups or stand on his toes, Levinson adamantly said he still has a spirit of adventure that will not surrender to a medical diagnosis.

“Muscular dystrophy is something I might have,” Levinson said. “But it doesn’t define who I am.”

With this attitude in mind, Levinson and Nicole, his wife of seven years, are about to embark on the greatest adventure of their lives. The couple, who met a year before Levinson’s diagnosis, attended the same cultural geography class at San Diego State University.

Fittingly, geography is the focal point of the upcoming adventure.

The couple plan to sail around the world in early December on their sailboat, Naoma. They will depart the San Diegan shores, heading southerly around Mexico and the Sea of Cortez before crossing the ocean to the Marquesas Islands in French Polynesia.

Far removed from the creature comforts they know within San Diego, Ryan and Nicole will be roughing it. But Ryan was quick to point out there are several accommodations that will make the course a little less choppy.

Naoma comes equipped with an autopilot control, a high-tech radar system, long-distance radios and a watermaker machine that will convert ocean water into drinking water.

When asked about the timeline for the adventure, Levinson shied away from laying out a firm itinerary.

“Our clock will be dictated by nature,” he said.

The journey is sure to be marked with immense uncertainty — then again, the same could be said of Levinson’s everyday life.

He readily affirmed there is no set agenda for the excursion.

“There are many, many layers of goals,” Levinson said. “But, really, this is much more about being open to the adventure. Once you’re out there, you’ve got to open your mind and go where the wind blows.”

Levinson has been sailing since he was a young boy, but he is still brushing up on his skills as he gears up for his latest journey. He has recently taken courses in navigation, offshore survival and firefighting. Additionally, he attained an emergency medical technician certification.

From Levinson’s vantage point, the sailing excursion is an opportunity to draw connections to mental and physical challenges as he seeks a whole new perspective on his life’s purpose and how he can live it to the fullest alongside FSHD, for which there is still no known cure.

“This trip is about so much more than just sailing,” he said. “What really draws me in is the complexity of this challenge. It’s all about the big picture.”

For her part, Nicole acknowledged that the upcoming excursion is going to be life-altering; but she’s willing to take it on with open arms.

“I think people are afraid to let go of their stuff,” she said. “People are afraid to let go of their known comforts that they have now.”

Levinson said he has encountered plenty of naysayers as planning for the sailing excursion picked up steam.

“I feel I was called to live this way, even if I have [FSHD],” he said. “I’m just not a suit-and-tie, 9-to-5 kind of guy.”

While muscular dystrophy may have slowed down his journey of the past nearly two decades, Levinson said he sees a silver lining. The condition may have weakened him physically, but it has strengthened him elsewhere.

“I think I’m a little bit stronger, mentally and emotionally, from this,” he said. “Happiness is all about living in the moment. I just want to go where I’m called to go.”

Levinson filmed a video to discuss his upcoming trip. View the video at vimeo.com/102988013. He also set up a blog so others may follow his adventure. To follow Levinson’s blog, visit ryanlevinson.com.

—Dave Fidlin has been a professional journalist for more than a dozen years. Throughout his career, he has contributed to a variety of newspapers, magazines and websites across the nation. He has a special affinity for San Diego and its people. Contact him at [email protected]