When life challenges go far beyond Pompe disease

Mortality and grief have cast a fog that's been hard to see past

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by Dwayne Wilson |

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Have you missed me since October? Did you wonder if something Pompe-related had happened to me? Did I get lost “on the road to Pompe,” or did my engine break down somewhere? Truth be told, I got lost in a bank of fog and didn’t know when it was going to clear.

My wife and I traveled to Spokane, Washington, for a short Halloween vacation to visit our three sons, daughter-in-law, and two granddaughters. We flew back home Nov. 1. That night my wife received a phone call from the residential care home where my mother was living. She was having issues breathing, and the nurse suggested we visit the home ASAP. By the time my wife and sister made it to my mom’s home at 2:30 a.m., she’d passed away.

My life came to a complete halt, and the grieving and mourning began. I wasn’t in the right frame of mind to write my column and needed some time off. It’s one thing to manage my Pompe disease daily, but when other difficulties are added to the mix, things seem to amplify. I wasn’t feeling inspired to write anything. My joy had left me.

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I felt my mental health was being tested to the maximum extent. I wondered what else could pull me down. The funeral and memorial services had to wait until after Thanksgiving and the holidays. The cloud of fog surrounded me and my family while we waited.

Darlene Wilson lived her life through 87 wonderful years, and even though I received one of my late-onset Pompe gene mutations from her, I’m grateful for the man I am today, in many ways because of her. My move to Southern California, where I was able to make memories and spend the last seven years of her life near her, will always be with me.

Grief compounded

My December started with a weekend trip to Las Vegas. As we were packing our suitcases at the hotel one Monday morning, I got a call from a co-worker that my good friend and co-worker Lance had passed away. He was the guy who gave me my first opportunity to vacation in Hawaii in 2022. We had the opportunity to stay with him at his Oahu timeshare and go snorkeling.

I was in total shock and disbelief about Lance’s death as he was only a few years older than me. We’d just talked about plans to spend time together and travel some more back in Hawaii.

At this point, the fog surrounding me had grown larger than I could’ve imagined. Losing my mom and my friend, who were so near and dear to my heart, was devastating. My grief was taking on its own identity. With the holidays coming up, I felt that with every day, I had a harder and harder time moving forward.

Late-onset Pompe disease usually results in muscle weakness, a main symptom of the disease. On the other hand, Pompe doesn’t weaken emotions or feelings. My heart feels pain and sadness, and my brain feels depressed. The loss of loved ones brings on hurt. The feelings I have, the thoughts that go through my mind, steer the direction that I’m going.

As the new year started, I needed to find my way out of the fog and back on the road. I told myself to keep moving forward, to gain some positive thoughts and not allow my grief to overwhelm me. I started exercising again, including riding the stationary bike for 15 to 20 minutes a day. I also read the book provided by the funeral home about the grieving process. On warmer days after work, I soaked in the hot tub to relax my mind, body, and soul.

I attended an Anaheim Ducks hockey game and then a Los Angeles Lakers basketball game with some friends. Resuming the activities I most like to do was a huge step forward. It has seemed to jump-start my motivation and my enthusiasm for life.

The bank of fog has slowly dissipated from my view, and things are starting to appear more clear. The grieving process will always be a part of my life, but what matters is how I react to it. The desire to write and spread awareness about living with Pompe disease is again alive and well in me.

My journey is still a work in progress. I’ll keep moving forward and letting the wheels go round and round “on the road to Pompe.” It’s good to be back writing my column.

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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