Checking off a childhood dream: Riding a wave, despite my disability

While growing up in Southern California, I spent nearly every day in the summertime with my friends at the beach. We’d excitedly grab our towels and boogie boards and set out for one of the many beaches within 30 minutes of where we lived.

But during all those summers, I somehow never learned to surf. Maybe it was because I felt clumsy and had no coordination or balance. I couldn’t ride a skateboard, after all, which didn’t make me feel confident to try surfing. Or could my excuse have been that I’d never owned a surfboard? Back then, I was content to use the boogie board to ride the waves into shore.

Getting my diagnosis of late-onset Pompe disease when I turned 50 brought back memories of activities I wasn’t able to do as a kid, though my friends could. Now I better understand why: I had Pompe.

Dwayne arrives at the adaptive surfing event with Life Rolls On. (Photo by Dwayne M. Wilson)

Even though Pompe disease symptoms have taken some abilities away from me, I’ve learned not to let fear stop me from trying something new, especially if I’ve always wanted to do it. One dream was to catch a wave on a surfboard.

That dream came true last weekend.

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Surfing, with a little help

This past year I learned about the nonprofit organization Life Rolls On, which holds surfing, skating, and fishing events for adaptive athletes. It was founded by Jesse Billauer, who’s also the executive director and chief executive as well as a three-time world adaptive surfing champion. After a surfing accident left him a quadriplegic at age 17, he decided his life wasn’t over. A friend said to him that life moves on, which Jesse adapted as “Life rolls on.”

The organization began as a “splash into the unknown” on Sept. 11, 2001, according to its website, and has since affected thousands of lives. Billauer said that Life Rolls On “is dedicated to improving the quality of life for people living with various disabilities.”

I was excited to learn that a Life Rolls On adaptive surfing event was coming to Huntington Beach, California, near my home, on Aug. 26. Deciding I was ready to catch my first wave on a surfboard, I registered as an adaptive athlete. It seems that’s been a theme of mine throughout my Pompe journey: doing activities for the first time.

We arrived at Huntington Beach just north of the pier at a Sixth Street parking lot at 7 a.m. I was all geared up, riding the Dolphinator (a nickname for my electric wheelchair) down a beach trail with access mats, then using a hiking pole to walk through the sand.

The adaptive athletes were divided into varied color-specific groups and assigned a time slot for their surfing experience. I was on Team Lavender. My wife, Jean Gibson, set up some camping chairs and an umbrella and pulled the Dolphinator through the sand as I met with my group at a lifeguard tower.

Ready to go: A line of beach wheelchairs with the Team Lavender flag. (Photo by Dwayne M. Wilson)

When it was my time to surf, I was excited. Surfboards for many levels of disability were available, as were beach wheelchairs. I walked into the water myself, got halfway up to my waist, then got onto a surfboard with rails.

I laid on my stomach, propped myself up on my elbows, and held onto the handles of the surfboard. Team volunteers were staged in shallow water and somewhat deeper, with a couple of guys wearing fins in deeper water still. They used a system akin to a conveyor belt to push me out to where I could catch a wave. They held onto me so I’d be at peace there. At one point, when a splash moved my hair into my face, a volunteer kindly moved it out of my eyes.

Team Lavender with Dwayne after he caught the waves for his first surfing experience with Life Rolls On. (Courtesy of Jean Gibson)

I rode three waves during my allotted time slot. Each was an incredible, thrilling experience. I sensed salt water across my face as I went over the crest of a wave, then caught it and rode it to the shore, with all the people cheering me on.

The volunteers were all friendly and encouraging, making me feel safe throughout the experience and never judging because of my disability. For that moment, I was an athlete, riding the waves “on the road to Pompe.” It’s something I’ll always remember and cherish.

I’m thankful for my wife, all those volunteers, and the rest of Team Lavender for making my day extra special. I encourage you to try something different as well, maybe even an adaptive sporting event. Life does roll on.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.