“The internet is a well of humanity if you dig past the surface of it.” Comedian, actor, and filmmaker Bo Burnham said this in 2019 during a writers panel hosted by The Hollywood Reporter. Burnham got his start making YouTube videos in the early 2000s, back when the concept…
Columns
My body tensed, rigid as the blue therapy mat beneath my body. The physical therapist cradled my right leg, directing me to push my foot against his hand with all the might I could muster from the sleepy depths of my hamstrings. Face scrunched and fists clenched,…
Hear that? It’s the sound of writers across the world readying to drive ourselves crazy in November for National Novel Writing Month, aka NaNoWriMo. We’ve got our blankets, a mug of our chosen caffeinated beverage, and snacks, and will be devolving into decrepit hermits as we attempt to achieve the…
It’s strange to think that a little over two years ago, I witnessed — and participated in — the conception of SMA My Way, a patient-focused community sponsored by the biotech company Genentech to support all of those affected by SMA. A lot has changed since then. I graduated…
Life after high school leaves us with plenty of paths to choose from in our pursuit of various goals. College and careers are a few of the many options to be considered. After exploring volunteer work and other activities at the local disability center, I began searching for…
Ever since I can remember, I’ve been taught that I am a soldier in this war against SMA. My destiny is to help others fight it, too. Early on, people gave me gifts to help me remember my purpose. One person, inspired by my fight against an overwhelming opponent, gave…
My husband, Randy, is a beekeeper. I helped him with the bees until an unfortunate rash from a bee sting on my forehead landed me in the emergency room. My dramatic predicament likely stemmed from the combination of the bee’s momentum as she zoomed to the pasture across…
At every briefing before their shift, the nurses at my local children’s hospital would glance at me with amusement. As a child, I was often in the hospital for respiratory issues, and I had acquired a reputation. Not for my SMA, mind you, but for the one request I…
My local clinic isn’t actually local. Boasting neighbors like IKEA and the Midwest tourist trap that is the Mall of America, my clinic is a 20-minute drive — one way. I could take the moderately more scenic route if I didn’t have a penchant for running late, but I…
A little while ago, I went from using one nursing agency to using three. The change allowed me to find enough nurses to sustain the care I need with spinal muscular atrophy (SMA), and it taught me an important lesson about when to ask for help…
