Do you sleep in your wheelchair? This is a question I used to get all the time in middle school. I always thought it funny that some of my peers genuinely thought that I remained in my chair around the clock,…
If you live in the U.S., or are in any way, shape, or form active on social media, you’ll know that Tuesday is a big day for us Americans. But I want to briefly talk about what happens after the election — no matter who wins. People familiar with my…
Children typically grow up with many opportunities to participate in a variety of activities. After exploring options, they choose the ones they enjoy most. They might choose sports, or they could opt to participate in art, music, or video gaming. If passionate, they might stretch these interests into adulthood. It’s…
As far back as I can remember, I have had an affinity for all things scary, creepy, suspenseful, and macabre. From “Alfred Hitchcock Presents” (which includes books, black-and-white TV reruns, and movies), to true crime drama, thriller fiction, and “The Walking…
Our 10-year-old daughter Ella, the youngest of three children, was born with spinal muscular atrophy (SMA) type 2, and needs help with many tasks throughout the day. In the mornings, I get her bathed, dressed, and ready for the day. If she needs to…
I write a lot about the body. It’s inescapable in my line of work. I identify as disabled, and more than that, my disability is painfully visible. But my interests are rooted in the metaphysical. If I’m not writing about mental health, which has everything to do with physicality…
I’ve been grieving this month. On some days, the weather was impeccable. Morning dew twinkled on silk linens of freshly spun spiderwebs. The air smelled of sun-crisped leaves dipped in salted caramel. Other days were filmed in grayscale. Winds howled through my window frames. Ragged clouds hung in the sky,…
Our 10-year-old daughter, Ella, who has SMA, loves to sing. She’ll ask her mother to print out song lyrics and then sit at the kitchen table and sing. Her voice is strong, and her pitch is perfect. She has quite a range as well. During…
Around the corner from my house there’s a shopping mall that’s stood as an iconic symbol of my small hometown for decades. It’s across the street from the high school my sister and brother-in-law went to, and it’s also situated near my go-to Barnes & Noble store, as…
If you’re a member of the SMA News Today Forums, you might know that I trialed the JACO robotic arm a few months ago. When I heard that Numotion was servicing my area of the U.S., I decided to give it a shot. Why not, right? I’m already…
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