Columns

The cloak of disability and the power of perception

“Are we wearing a cloak of disability?” my mom asked as a vehicle pulled out in front of our wheelchair van. At least, that’s what I thought she said. It turns out that she actually said “cloak of invisibility,” which made more sense. Although our big, black van is far…

Processing guilt over both Hurricane Helene and SMA

Incredibly, October is almost history. A month ago, our mountain county and others west of us here in North Carolina were left reeling from the surreal aftermath of Hurricane Helene, considered a once-in-a-thousand-year storm. Out of the proverbial ashes of incomprehensible destruction and heartbreak have risen untold examples of…

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…