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Finding purpose and joy through the gift of volunteering

Volunteering has given me more joy and meaning than I ever imagined possible. Living with spinal muscular atrophy (SMA) means I can’t move my own body, but that hasn’t stopped me from finding ways to move others. Whether supporting disaster relief efforts or creating meaningful moments for hospice patients,…

Practicing self-compassion while facing SMA challenges

“Alyssa, this is the best you’ve ever looked to me,” my gastroenterologist recently exclaimed during a routine appointment. Though I hadn’t felt my best internally, I took her word for it. After all, she’d been my doctor for more than a decade, and this was the first time I’d heard…

What it means to go the distance while living with SMA

The album “A Whole New Sound” is a treasure trove of nostalgia for millennials. Released last month, it features early 2000s punk rock bands performing covers of iconic Disney songs. Listening to Simple Plan’s rendition of “Can You Feel the Love Tonight” fuses every ’90s kid’s…

When the disabled needed a place to connect, I created one

As depression and anxiety started to affect my outlook on life, I noticed how these challenges clouded even the simplest moments. Depression’s weight often made it hard to see beyond a day’s struggles, while anxiety wrapped every action and interaction in a shroud of what-ifs and what-nows. Seemingly a…

The comfort conundrum when living with SMA

In the family classic “Willy Wonka & the Chocolate Factory,” all four of Charlie Bucket’s bedridden grandparents share the same sleeping space. It’s a bewildering arrangement that fans have poked fun at throughout the years. Every time I watch the movie, I’m left wondering how these people share…

I just bought and used my first all-terrain wheelchair

“Watch out for that Heidi Brown,” my dad likes to say. “She’ll keep you on your toes.” It’s true. If there’s one thing my mom excels at (and there are many), it’s coming up with the most exquisite of curveballs. See our last-minute trip to Pensacola, Florida, last December…