Columns

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…

Driving home from Boston one evening, I witnessed the sky paint a vibrant sunset as we cruised down the highway. Bright pinks and oranges swept across the view from my window as the radio blared through the speakers. A dear friend was in the driver’s seat, and as the sky…

When our children, Matthew and Katie, were in elementary school, I volunteered regularly in their classrooms. As a former educator, I knew that no sane teacher would turn down an extra set of experienced hands. I chaperoned field trips, helped organize classroom parties, and cleaned up after Project…

My wife, Lindsay, and I work as a team when it comes to taking care of Ella and the household. We have three children, ages 11, 10, and 8, as well as two young dogs and a bunny. Taking care of Ella requires physical strength. We…