Ella sits in her power chair at a table in the hospital’s surgical waiting room. She’s coloring a picture with the words, “The Best Is Yet to Come” on it, surrounded by flowers. She works with diligence and precision. Her artwork is for her mother, Lindsay,…
First in a series. School can be a special kind of hell when you’re the awkward kid in a wheelchair. You attend normal classes, but you don’t look normal. And then the kids find out you’re smart. Too smart; a smart***.
A couple of months ago, a woman stopped me in the hallway of the clinic I go to for physical therapy. She overheard me talking with one of my physicians about my Spinraza (nusinersen) treatments, and she asked me to speak with her two teenage sons who…
Like many others with SMA, my functional dexterity is limited. I’m grateful to still have the ability to write legibly, type on my keyboard, and maneuver my nimble fingers into the snug corners of a Pringles can. But I do see my hands as “SMA hands.” When performing a…
I write a lot about brokenness. I always have. It’s one of the themes of my work, not only as a writer — but also as a (future) mental health professional. Looking back, I’m sure it has a lot to do with my childhood, and the…
My daughter Ella went to the hospital last week to receive her ninth dose of Spinraza (nusinersen). Before her appointment, she had concerns about the procedure. For several months, she has watched as her mother, Lindsay, battles a bone infection due to surgery. The…
The A in SMA stands for “atrophy.” Atrophy means “to waste away.” My muscles are wasting away, and that can cause a lot of other problems. Scoliosis? Check. I had corrective surgery for this when I was 7. Osteoporosis? Yup. Healthy…
If someone had told me a few years ago that I would love going to physical therapy every week, I would have laughed. Let’s just say that the idea of letting other people stretch my arms and legs, contort my muscles into uncomfortable positions, and make me do…
I’m a strong, 30-something woman with SMA who feels beautiful, inside and out. One of the most meaningful compliments I’ve ever received was scrawled across the top of an essay written for a high school English literature class. In bold red ink, my graded paper exclaimed: “Finally! A dissenter…
I’ve always been a night owl. It’s a running joke in our family: My dad and I stay up until 11 p.m. or midnight, while my mom has a strict schedule comprising 8:30 p.m. bedtimes. She gets far too much enjoyment out of our morning grumpiness. If she’s…
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