Standing in the Crater of a Volcano, Having My Mind Blown

The end of a Hawaii trip provides a new perspective on life with Pompe

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by Dwayne Wilson |

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Our Hawaii vacation was full of activities and adventures every day, but living with late-onset Pompe disease, I didn’t know how my body would respond to all the opportunities to do new things. Would my leg muscles be sore and achy every day? Would I need to take naps during the day or possibly stay in the hotel room by myself to rest up?

All sorts of thoughts were going through my head as someone living with a rare disease. I don’t want to be a burden to others, or bring others down while they should be having fun. Sometimes, it’s easier to do nothing. But how then would I enjoy life to the fullest?

Thankfully, I felt I had more energy every day than I’ve had in a long time. My muscles were never tired or sore. Maybe it was the tropical island vibes of Hawaii, but I was ready to conquer all my fears. I needed no naps during our vacation. I felt like a superhero ready to attack each new obstacle for that day.

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The snorkeling adventure and catamaran ride were at the top of my accomplishment list. Seeing the Dole Plantation and the beaches of the North Shore was my next favorite activity. Rounding out the Top 3 was seeing Diamond Head, something that my wife and her best friend, Jennifer, had wanted to do while on Oahu.

Since the pandemic, reservations are required to hike Diamond Head, a volcanic cone near Honolulu. I was able to secure a spot from 4 p.m. to 6 p.m. one afternoon. While I wouldn’t be able to climb up the trail’s many flights of stairs to make it to the lookout point, I did plan on taking my Dolphinator (my nickname for my electric wheelchair) as far on the trail as I could go.

There is a yellow truck with the words "Gilligan's Beach Shack" on its side and a door, with a palm tree on one end. There is a Facebook logo above the door. A man in an orange tank top in a wheelchair is at the left, and a woman in a maroon outfit is on the right; they are facing the serving area. A black menu with white and blue lettering is before them.

Dwayne Wilson, left, and Jean Gibson order lunch from Gilligan’s Beach Shack food truck in Waikiki, in Honolulu. (Courtesy of Dwayne Wilson)

We spent the morning at the Aloha Stadium Swap Meet shopping, and then had lunch at Gilligan’s Beach Shack, a food truck in Waikiki by the beach. I found the fish and chips delicious while my wife enjoyed the garlic shrimp. We then found time to stop for dessert at Purvé Donut Stop. I chose a green Oreo Hulk Smash Donut.

With some more time to spare, we took a short drive to visit the Byodo-In Temple, a grand building surrounded by lush greenery and trees with views of the mountains. Soon after, we drove to the Pali Lookout and then finally to Diamond Head. It was a busy yet fun day as we were now ready to tackle the volcano.

A short brown sign on a shorter stone wall reads "Diamond Head State Monument." In the foreground is a man in sunglasses, a green visor, and an orange tank top. Behind the sign is a green field with trees.

Dwayne Wilson at the Diamond Head State Monument sign. (Photo by Dwayne Wilson)

When we drove to Diamond Head State Monument, we went through a single lane tunnel that took us  from the outside of the mountain to the inside, in the crater of the volcano. We parked the minivan and went to the visitor center to start our trek. It was hot and humid, even as the sun was getting closer to going down.

We started on the trail, which was a concrete path. As I looked around, I had a hard time fathoming that I was inside the crater of a volcano. The sky was bright blue, and puffy clouds hovered over the island. Rolling down the path, my electric wheelchair, the Dolphinator, was full throttle ahead. It went as far as it could go with the incline. I waved to the women as they completed their mission to hike Diamond Head. I turned around and headed to the visitor center.

My journey in the volcano was complete, an accomplishment that makes me proud.

A woman in the distance walks on a concrete trail, with brown grasses and trees on either side, and a blue sky with clouds above.

Jean Gibson leads the way on the Diamond Head hiking trail. (Photo by Dwayne Wilson)

The women made it to the top of Diamond Head and back down in record time. They were tired, sweaty, hungry, thirsty, and ready for drinks. We soaked up the moment for a little bit. How often can you say to people that you were standing in the middle of a volcano? Now it was time to drive to Waikiki and grab some dinner at the Tiki’s Grill & Bar.

A body of water and its coast without a beach. A cloudy sky with a touch of blue is overhead.

A views of the ocean from the top of Diamond Head. (Courtesy of Dwayne Wilson)

Getting the diagnosis of Pompe disease and being on this journey “On the Road to Pompe” has changed my whole perspective on life and what’s important to me. Life is about the adventures and experiences, making memories with loved ones, making new friends, and enriching your life and others’ lives along the way. It’s enjoying life to the fullest and living my best Pompe life.

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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