No Guts, No Glory: Stepping Out of My Comfort Zone With Pompe Disease

A columnist overcomes his fears about snorkeling with late-onset Pompe disease

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by Dwayne Wilson |

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I was excited yet nervous for my recent bucket-list vacation to Hawaii with my wife, Jean, her best friend from Montana, and one of my co-workers. The four of us flew six hours to Honolulu on Hawaiian Airlines and stayed on the ninth floor of Marriott’s Ko Olina Beach Club, overlooking the beautiful lagoons and ocean.

We booked adventures and made plans to do things I’d never done before. I wondered if I’d even be capable due to my late-onset Pompe disease. Would I have the strength and energy to complete certain excursions, given my weakened leg muscles and breathing?

Our first adventure was a snorkeling and whale-watching cruise out of the Ko Olina Marina. I was scared to death the two days before, wondering if I’d be able to breathe with a snorkel or get off and on the boat. Would I be able to float and relax? I became more nervous as the time to leave grew closer.

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When living with a rare disease like Pompe, your daily life must be planned, researched, and adapted to your abilities. I often steer clear of activities that may embarrass me or harm my body. I didn’t want to slip and fall on the deck of the catamaran or get stuck in the water after snorkeling.

A white catamaran floats next to the dock at the Ko Olina Marina in Oahu, Hawaii. The water is bright blue and there are palm trees in the background.

The Kai ‘Oli’Oli catamaran, operated by Ocean Joy Cruises. (Photo by Dwayne Wilson)

My wife had researched the company, Ocean Joy Cruises, to find out if the excursion would be accessible for me. The catamaran had wide steps into the water with handrails. There were restrooms on board and lunch and drinks were provided. I felt more comfortable knowing these things.

The last time I was on a boat, I’d gotten seasick and vomited. I was more prepared this time with Dramamine (dimenhydrinate), a nausea relief medication, and seasickness patches. A catamaran tends to glide over the water and not rock from side to side like a hull-type boat. My anxiety levels started to decrease as we arrived at the dock.

Jump in the water

Sometimes you just have to go all in and give something a try. I decided it was time to step out of my comfort zone and experience life. I wasn’t going to allow Pompe disease and my emotions to hold me back and suck the joy out of this adventure. You don’t know that you can’t do something unless you try it first!

It was my first time snorkeling in Hawaii. And I wasn’t alone, as my wife, her friend, Captain Doug, and his awesome crew all helped me on this fun adventure.

Dwayne and his wife, Jean, pose on the bow of the catamaran. They are both swearing swim clothes, hats, and sunglasses, and in the background is the island of Oahu.

Dwayne Wilson and his wife, Jean Gibson, on the bow of the catamaran. (Courtesy of Ocean Joy Cruises)

For safety reasons, all passengers were required to go barefoot. I walked onto the catamaran and put our backpack inside the lounge area. Then I sat on a bench seat at the bow looking straight out to the water.

As the catamaran left the dock, it headed north along the west coast of Oahu. Captain Doug spotted a monk seal, an oceanic manta ray, and a large pod of melon-headed whales. It was such a neat experience seeing all of this sea life on a beautiful, sunny day.

Dwayne wears a life vest, goggles, and snorkel while swimming in the ocean. The photo is half underwater, and in the background a white catamaran is visible.

Dwayne Wilson snorkels in the ocean. (Courtesy of Ocean Joy Cruises)

Soon, it was time to put on a mask, snorkel, safety vest, and fins. After a brief safety lesson, the snorkeling adventure went full speed ahead. I waited behind the rest of the group and sat on the last step. Putting on my size 13 fins, I asked for a pool noodle so I could have a little extra flotation and feel a bit safer in the ocean.

I dropped into the water, paddled out to the end of the tow rope, centered myself, and then put on the snorkel. I saw many fish of all different colors. A spotter yelled out, “Turtle!” and I swam a little in that direction to see it. I felt so free being in the ocean and overcoming my fears of snorkeling with Pompe disease.

An underwater shot shows Dwayne snorkeling while wearing a life vest, goggles, snorkel, and fins. He is looking down into the ocean and is making peace signs with both hands.

Courtesy of Ocean Joy Cruises

Dwayne Wilson snorkels in the water with Pompe disease. (Courtesy of Ocean Joy Cruises)

Eventually, it was time to swim back to the catamaran. I took off one fin and tossed it up the steps. Then, putting my foot on the three-step ladder in the water, my wife helped me remove my other fin. I grabbed the handrails and lifted myself up. I was able to climb out of the water and up the next three steps onto the rear deck to take off the rest of my gear.

Sitting back on the bench at the front of the catamaran, we were served a delicious lunch and had drinks on the slow cruise back to the marina. I found myself feeling very proud of my accomplishment. I celebrated conquering my fear on the road to Pompe and was able to enjoy the rest of our Hawaii adventure.

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.


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