“OK, so just pick up my arm and rest my elbow on the table right here, with my hand up toward my face. That’s right. Now do the same thing with my other arm. Yeah, like that, but move my elbows closer together. Great! Now pick up my coffee mug…
Columns
My mother dubbed me a Pollyanna many years ago. I loved the 1960 movie “Pollyanna,” but don’t remember if I identified with the orphaned character’s perpetual, cheery optimism or merely adored Hayley Mills, the actress who played her. In one scene, Pollyanna (sent to live with her wealthy,…
“I feel like my body is gaslighting me,” I said to my dad in frustration after checking my MRI results. While I was hoping to get some answers, there in plain sight were the words “findings are unremarkable.” Of course, this news was ultimately good. Unremarkable findings meant nothing serious…
For most of my life, I felt like I had to shrink parts of myself to fit into a world that wasn’t built with me in mind. Living with spinal muscular atrophy (SMA) means navigating not just physical barriers, but also the emotional weight of constantly feeling different. I…
SMA has certainly given me the privilege of seeing cool gadgets and cutting-edge technology evolve over time. For instance, I’ve had five different wheelchairs since 1987, when I was 5 years old. The technology of them has changed so much over the years that I’ve felt like a passenger…
Confession: I do not enjoy taking showers. Please don’t misunderstand me; I absolutely love the feel of hot water on my skin, the sweet fragrance of scented soaps, the soothing comfort of a shampooed head massage, and the lifestyle of good hygiene! But as an adult with SMA, the…
One of my favorite comfort shows is the CBS sitcom “How I Met Your Mother.” Centered around the romantic quest of Ted Mosby, who as his older self recounts to his kids the story of him meeting their mother, the series is also an ode to lifelong friendships. Surrounding Ted…
“Umm, bunk beds?” My mom and I stopped in our tracks, backpacks and pillows in tow, peering into the room where we were supposed to sleep during a fun and relaxing weekend away. Needless to say, it was not the accessible room we’d hoped for. A few months prior to…
Spoiler alert: This column discusses the plot of the 2024 film “The Substance.” Hollywood was abuzz about Coralie Fargeat’s 2024 film “The Substance” when it arrived on the scene. It was a controversial contender for attention and awards. People seemed to either love it or hate it; audience…
In May 1997, my husband, Randy, and I awaited the arrival of our third baby. The ultrasound indicated we were having a boy. We named him Jeffrey. Years before, I’d taught at Brockman School, a self-contained setting for students with orthopedic and myriad other conditions considered severe and…
