Healthy Living

Man Completes Journey of a Lifetime Despite Muscular Dystrophy

Man Completes Journey of a Lifetime Despite Muscular Dystrophy

Living his life in accordance with his mantra “You can’t always choose what happens to you, but you can choose what you do about it,” Ryan Levinson of San Diego California was recently featured on Fox 5 News TV, the news segment is also posted on the website of Fox5.

Three years ago, Ryan and his wife Nicole, set off for a sailing adventure. They sold their properties and left their jobs to sail from San Diego to the Pacific Ocean, a journey that took a year and a half to be completed. However, this is not the only reason that made their return home newsworthy. Ryan suffers from a muscle disease that continuously makes him lose muscular strength, making the journey they have taken a hundredfold harder for him. But he not only went through it and completed it, he loved it.

He has been diagnosed with Facioscapulohumeral Muscular Dystrophy (FSHD) when he was in his mid-twenties, but that didn’t stop him from living an active lifestyle. In fact, he was a triathlete up until his body couldn’t take it anymore. Prior to losing a significant amount of strength in his muscles, Ryan was appointed as the Chief Inspiration Officer of the OutsideOnline website and acted as a spokesperson for the Challenged Athletes Foundation. During this time, he engaged in activities he loved like surfing, paddleboarding, diving, kayaking, kiteboarding, and sailing. The best way to follow this would be through the articles that Ryan, himself, wrote, chronicling his journey with FSHD and his sailing adventure with his wife.

March 2011: OutsideOnline

Ryan shared in this article how he felt like he was speaking with two voices. Public and private voices that speak in different tunes. A public voice that speaks only positive things of how he lives his life to the fullest despite the challenges he faced with having muscular dystrophy. Also, a private one that he kept to himself, one that screams of an overwhelming pain in coping with living with the never-ending loss of strength that his disease causes.

He kept in mind that there are plenty of people dealing with extreme loss, which could be more severe than what he is dealing with. However, he shared that he was a person who lived for physical activities, whose whole life and career revolved around being active. So, he couldn’t deny the pain of knowing his body is genetically programmed to continually wither away.

He continued to share that for people like him, who had this muscular disease, training, diet, and medication will do nothing for them. Unless a cure is found, they will continue to lose more and more strength in their muscles. This realization stemmed from his ability to surf, or his lack thereof. He shared how after 25 years of being able to surf, he was reduced to riding crumbly soft inside leftovers, how surfers who didn’t know him dismissed him as a beginner.

In the extreme depression he felt, he found comfort in likening himself to the rocks on the beach. How the thought of dying and becoming part of something pure and beautiful felt right. Then he realized that he was already part of it all. And he came to reflect that surfing was not a person’s ability to maneuver a board, but how that person can completely experience the moment.

July 2012: Swell Voyage, Fight to Flight

Ryan is known to credit his wife, Nicole, for inspiring him. However, in another article, he credits another amazing woman for being the catalyst that made him pursue the path that he had to abandon the day he was diagnosed. A woman named Liz Clark, who lives in her sailboat while exploring the remote areas of Americas and South Pacific. He shared that he was inspired by her and he sent an email to her with a link to the article above.

Her reply struck a chord with Ryan’s heart that changed him. He felt like Liz knew of his suffering, especially when she enclosed Albert Einstein’s quote about how a human being’s own optical delusion imprisons that person. He then realized that he had imprisoned himself and only he had the key.

He then disclosed his shattered ego and lost dreams. The knowledge he had about the struggles he is yet to face had made him lose his happiness. He shared that he felt like he was an injured warrior who is only moving forward, through the pain. Ryan wrote that he had been afraid to share those thoughts he had, afraid of the loss it might cost. He was afraid of letting people down, even those people who already looked up to him for hope and inspiration. Finally, he shared how he was afraid of losing the opportunities, human connections, and the general purpose of his life.

He had defined himself as being capable and strong. At that point, sometimes even holding up a toothbrush was a struggle for him. He decided then to take the chance of going sailing offshore, exploring true wilderness.

SV Naoma Voyage 2014-2017

Their voyage started around December 2014, and the couple planned to spend a few months exploring Mexico and the Sea of Cortez before they cross the Pacific Ocean towards the Marquesas Islands in French Polynesia. You can see the full video documentation of their voyage on their Youtube Page, Two Afloat Sailing. The videos they have posted has already been viewed thousands of times. They are a source of inspiration for not only people who suffer from muscular dystrophy, but also for regular folks as well, even those who are not interested in sailing.

Both him and his wife are adept sailors that had extensive coastal experience before they took the long journey.  Since the late 1990's, the couple has been sailing together. However, they only started to do more serious cruising in 2006, at the waters off of Mexico, Baja, and Southern California.

Ryan had been sailing for most of his life. He teaches keelboat sailing at J-World, and he was a San Diego State University’s assistant professor for keelboat sailing. He possesses a master’s license, and he had worked as mate and captain for large sailing yachts in both Mexico and California. His team was the national champions in their class, and he sailed on the US National Team. And before they started their voyage, he spent the time to extensively study survival techniques.

Nicole also has a sailing instructor certificate, albeit for smaller boats. However, she had experienced working on large sailing yachts, including those that have standing navigational watches. Moreover, she used to be a San Diego ocean lifeguard.

Both were also Emergency Medical Technicians. They did nearly all the necessary modifications to prepare Naoma for their long journey, except for the rigging.

Why was the journey important to him?

In an interview, Ryan was asked why he felt that it was necessary for him to take the journey. He shared that he has accepted the fact that the time will come when he eventually loses all physical ability, that the impermanence of the human being is a good reminder for all to do something that one deems worthwhile.

He added that having a disease that takes away the control over his physical ability, doesn’t change who he is inside. He chooses to be in control of his situation and accepts that he doesn’t have the choice about having this disease. However, he marvels at his ability to choose how to respond to his disease. He said that if he can adapt and accept those facts, then he wants to prove that he can sail.

Ryan Levinson is an inspiration to everyone, a living proof that an unshakable will can open limitless possibilities.