I bravely soar to meet the challenges of SMA with determination and a can-do attitude. But despite my positivity, certain things get me down sometimes. I feel discouraged whenever I think about how only the few people closest to me know who I truly am on the inside. I…
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“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…
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…
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,…
“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…
A great relief comes when you’ve been working hard to get through an obstacle and finally see progress. Perseverance is rewarding. In my case, SMA has given me many complicated challenges. As my mom, my medical team, and I vigorously work through each one, the relief we feel when…
It’s closing in on three weeks since Hurricane Helene bullied her way into North Carolina. My husband, Randy, and I live in Ashe County, in the northwestern corner of the state, about 125 miles northeast of Asheville. Thankfully, the damage we incurred from the catastrophic…
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…
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…
Every morning, my dog, Stella, impatiently waits for me to wake up. While it’s true that she loves me, it’s also true that she’s excited about the treat I give her after she greets me with slobbery kisses. Rewarding her with a treat is a routine I unintentionally started…
