Oct. 6, 1997. My husband, Randy, and I snagged a last-ditch effort to save our baby Jeffrey from spinal muscular atrophy’s deadly vise: meeting with a pulmonologist who was trying gabapentin on another young child in North Carolina. We were desperately eager to learn whether or…
I looked at the faces on my computer screen and saw just a snippet of the SMA community. People from different locations, different cultural backgrounds, and with different types of SMA were gathered for a Cure SMA virtual book club, which I had…
For the longest time, winters were a joyful occasion. It wasn’t that I liked the snow, or the sickness, or the slog of self-isolation. I didn’t want to stay home for a third of the school year. I didn’t want to wrestle with long division and cellular anatomy all by…
I’m a groundhog. Well, symbolically, I’m a groundhog. I emerged from my burrow on Groundhog Day, 1986. I’m reminded of this each year my birthday rolls around, when my mom recollects her story about being in labor with me as the hourglass sands of Feb. 1 dwindled, and I…
The video game “Cyberpunk 2077” has become one of my go-to coping mechanisms. I know that’s an odd statement to hear from someone writing on a platform dedicated to disability advocacy, considering the backlash that video game developer CD Projekt Red has received due partly…
Well, 2021 has arrived, but we are still dealing with the ongoing ramifications of the previous catastrophe of a year. Those of us in disability communities remain in physical isolation, along with many others across the globe. Time goes on, but in many ways, it feels like it’s…
I didn’t have many friends growing up. Part of it was the disability. Part of it was the mental illness — social anxiety, depression, and a dash of trauma for good measure. And part of it was the desire to not be seen hanging out with “people like me.”…
Nearly a month into 2021, I think it’s safe to say we’re all glad to have left 2020 behind us. It certainly wasn’t an easy year. Its hardships likely will go down in the history books. Around the globe, we saw a devastating pandemic, raging wildfires, and a…
The day after Christmas marked one year since I began this whole self-quarantine thing. And the most unnerving part about it is that I have yet to receive my trophy to commemorate this milestone. That may be a bit of an exaggeration, but there is logic behind my reasoning. After…
To make my sometimes hazardous life with SMA less scary and more exciting, I tend to think of myself as a pioneer. As my previous column noted, I carry a lot of “baggage,” or experiences, during my travels. In 1803, as PBS noted, U.S. President Thomas Jefferson commissioned…
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