To boldly go where the SMA community has not gone before
I was always a “Star Wars” acolyte, but I became interested in the world of the “Star Trek” science fiction franchise when I was in high school. Whereas “Wars” is a giant space opera…
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What do you do when video game accessibility is inaccessible?
It’s 2014. I’m months-deep into a major depressive episode. Nothing is enjoyable, not even my all-time favorite video game. I feel listless in the worst of ways. Several of my friends are playing “Dragon Age: Inquisition”…
Why is listening to my body when I’m ill so hard to do?
“No, I’m totally fine” are often my famous last words when I’m actually not fine at all. Sometimes when an illness arises, I’ll downplay my symptoms. I’ll chalk them up to having a…
I am encouraged that more people are getting to know the real me
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…
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…
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…
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.
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…
A vertical platform lift will help me overcome another SMA obstacle
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…
The nature of devastation, from SMA to Helene, and a resilient spirit
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…