A Pompe patient shares the benefits of finding her community

In my last column, as part of “The Pompe Community Diaries” series, I introduced 47-year-old Katy Arvidson, who lives with Pompe disease and is the current Ms. Wheelchair Alaska USA.

In a recent video chat with Arvidson, we discussed how finding community helped her mentally. Excerpts, edited for clarity, follow:

AW: Describe yourself at age 32-33 when you retired from social work.

KA: I was the [clinical director] at a residential center for kids with mental health troubles. I loved working with the kids. Before resigning, I wasn’t in a wheelchair yet. I was losing balance, slipping, and falling a lot. Our office had seven cottages over two campuses. It was demanding and unsafe to walk through the ice and snow. It took months to reach the decision that I couldn’t return and safely perform there.

I really hadn’t developed personal friendships because I was very busy with work, and I was in a clinical trial [of alglucosidase alfa, now also known by its brand name, Lumizyme]. I didn’t have the time. My relationships were largely collegial. If we went for after-work drinks, I was the supervisor for many colleagues and had to maintain firmer boundaries. As I stopped work, those relationships faded.

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What were some outlets you found?

Resigning was profoundly depressing. I was isolated. I didn’t yet have my wheelchair. I had a difficult time getting out of my home. In Alaska, we have ice and snow seven to eight months yearly, and it wasn’t safe to leave on my own.

I watched a “South Park” episode featuring World of Warcraft (WoW). WoW became an outlet. Some online weren’t very nice. I did meet a group of blue-collar guys that I got connected to. They were complete characters and fun to play with. That pulled me in. One day I found an area in-game where I led the group off a giant cliff; when they jumped, they got stuck and had to restart the game. They got so mad at me. I was laughing like crazy. They were a good group of guys. I needed those friendships and socialization.

That wasn’t the ideal activity for me, but it ended up being the one I resorted to for better or worse.

My husband, who is also a social worker, later joined me in WoW at times. That was nice. He’s been truly great as a support. We would go for breakfast every Saturday, talk about WoW, and get some very strange looks in the restaurant.

What came after?

My husband and I moved into a little apartment owned by my church. I finally got my first wheelchair, and the apartment was accessible. I started working with kids who went to the church school. One kid would come every morning. I made sandwiches for him every day, and he would draw me pictures and thank-you notes. Parents in church heard I was tutoring, and every semester I’d tutor a couple of kids in subjects they needed credits for to graduate.

It was huge that the kids came to me because I wasn’t then trying to figure out how to get out of the home by myself. I started doing something meaningful, and I enjoyed the kids. It brought a big piece back into my life. When the kids left each day, it was still tough but better than [when I was] at my lowest, wasting time without doing anything meaningful.

What about in your 40s?

I got into handmade card-making during COVID-19. The online craft community exploded during lockdown, and I started engaging with supportive women.

I used to be a quilter in my 20s and 30s, but the fabric became too heavy. Even a baby blanket got too heavy to hold. I didn’t have enough control to hold the fabric. It was hard to put consistent pressure on the sewing machine pedal.

But I was very interested in colors, textures, and details, so I ordered a handmade card learning kit. There was so much to learn; at first, it took days to complete one card. Every Saturday, I’d craft together with an online community of women. Crafting retreats became virtual retreats because we were all isolating at home.

I could chat about life, challenges, and cards I created with this worldwide community. Creating and learning brought joy back into my life. And the community was supportive and uplifting.

How valuable were these communities?

My disease progression was a giant unknown — when I would get my first wheelchair, how my life would change as I became more isolated. Today, I get to chat with my Pompe sisters and my days are full with Ms. Wheelchair USA activities and advocacy work.

How each community came about wasn’t planned, but each helped me get through some very dark times. These connections were critical and saved me. Each brought different blessings: fun, work, creativity, and advocacy. I finally feel like I’m doing mission-driven work that fills my soul with purpose and meaning.

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