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Sailing Across the Pacific with Muscular Dystrophy

If Ryan Levinson fell in the water, there would be no easy way for him to swim to safety. But he decided to live on a sailboat anyway.


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So, what's holding you back? Photos courtesy of Ryan Levinson.

When I come across someone I haven’t seen in a while, they often ask me, “How’s your health?” They are asking about the genetic defect that causes muscles throughout my body to continuously disappear. If you want to know more about my weakness, google FSH muscular dystrophy, and you’ll learn how this progressive disease sometimes leaves me too weak to even close my eyes, smile, or kiss the people I love. But I prefer to focus on my strengths. Like my ability to adapt equipment or discover new techniques to accomplish tasks like raising sails or moving around a boat.

For example, I used to get stuck while taking off a T-shirt because my arms were too weak to lift it over my head. I’d end up walking around with the shirt half over my head, my arms pinned inside like a straightjacket, banging into furniture and walls until my wife, Nicole, or a friend would free me. Now I bend forward, fling my arms up to catch the bottom of the shirt, then let gravity pull my arms down and the shirt off. I use a similar trick for washing my hair. It’s half yoga and half Houdini.

In 2011, when Outside named me its Reader of the Year, I wrote that “I’m screaming within, like a captured animal slamming itself against the walls of its cage.” Now I’m in my mid-forties, and since then, a few things have changed. Nicole and I got a small sailboat in 2012, and in 2014, we set off from San Diego to sail across the Pacific Ocean. Four years and 15,000 miles of open-ocean adventures have flung the door to my cage wide open and let me discover some profound truths about myself.

For example, I like watching goats.

Nicole and I once spent five months anchored in a tiny secluded bay of one of the most remote Polynesian islands in the South Pacific. The island was a rugged paradise with steep cliffs and mountains, heavy vegetation, and not much else. The bay was exposed to open-ocean swells, so our boat was always rolling, pitching, and bobbing. It was far from comfortable, but the movement reminded us that the ocean is alive. When those swells reached the head of the bay, they unleashed upon a shallow reef and formed an incredibly fun wave. The cliffs surrounding the bay had dozens of feral goats who spent their days skittering around from rock to rock, happily living uncomplicated lives.

For three of the five months we were anchored in the bay, I did not set foot on land, simply because I didn’t see a need to. We would wake up, practice yoga, meditate, watch goats, surf, eat, do boat work, read and write, make love, and sleep. Not necessarily in that order.

It wasn’t easy. The days were intensely hot that close to the equator. We ate fruit and fished near the boat, but if we couldn’t catch anything, our diet was reduced to canned food and rice. Our only source of fresh water was what we made from the sea. To power the desalinator, a machine that makes drinking water from sea water, we had to maintain a robust solar-electrical system, on a moving boat, in a salty environment. We had no internet access, phone service, television, or AM/FM radio. Our only connection to the outside world was via our long-distance high-frequency radio, and that only worked when atmospheric conditions allowed our signal to propagate. There were no doctors, no police, no stores, no anything.

While we were there, Nicole flew to the U.S. for a month to visit family for the first time since we sailed away. At first I was terrified. I was alone on a small boat without the strength to get back on board if I accidentally fell in the water. There was no easy way for me to swim to shore. The year before, 50 percent of the indigenous population in these islands had contracted dengue fever, and when you’re alone and have muscular systrophy, dengue fever is an almost certain death sentence. There were big sharks. And sharp coral. And relentless heat. And constant rolling. And palpable isolation.

But the more time I spent alone in that bay, the more I came to realize that discomfort and fear can be a gift. They kept me sharp, and that helped keep me safe. I soon understood my excessive fear was fueled by endless thoughts of what-ifs instead of what is. Rather than focus on the countless ways I could suffer and die, I chose to focus on the fact that I was alive and well. My mind became calm and clear. Each moment became an intense celebration of life. While I watched the goats I realized I was not actually alone but part of something infinite and incredible. It was the happiest I have ever been.

The ocean is a powerful filter. Every sailor we met in those remote places had made a choice and crossed a massive body of water. Despite our different boats, levels of experience, personal beliefs, financial worth, genders, ages, or languages, every one of us faced our fears and decided to untie the dock lines and sail into the unknown.

Fear can be a gift, but it can also be a cage. Ultimately, it is your choice. There’s no going back once you understand that fact. For some people, that’s an incentive. For others, it’s an excuse.

But how is my health? It’s pretty good, thanks for asking! I’m starting to stumble when I walk. I swim more slowly than ever. When our boat leans to one side, I end up with my face smashed against the hull because my arms are too weak to check my fall. Every day I become less physically able to live this lifestyle with a modicum of safety or comfort. But my skin is clear, and I don’t have any cavities. Whether you’re dealing with carbon fiber or coconuts, we’re all going to die. So let me ask you something: How is your health?

We recently bought a boat that is bigger, faster, more powerful, and more stable than our old boat, all traits that make the new vessel better suited for my remaining level of physical ability so we can continue our adventures in the South Pacific. I’m looking forward to getting back out there among the waves and goats, with my hot wife and fellow sailors, to places where life is something to celebrate, not just survive.

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This post originally appeared on Outside and was published January 24, 2019. This article is republished here with permission.

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