The first and last time I consulted an orthopedic surgeon, I was told I had a 50-50 chance of surviving a spinal fusion. “Her lung capacity is 24% at its highest,” the surgeon told my parents. Their faces fell. I could sense their apprehension.
Columns
I’ve dreamed of cures. Miracles that occur in the blink of an eye. One minute, I’m sitting in my wheelchair, and the next, I’m standing, walking, running. I’m wobbly on my feet, of course, and crying, because everything has changed, and I’m probably overwhelmed by the newness of it all…
On the corner of Western Avenue and Birch Street, two dainty toddlers ruffled through vibrantly woven Easter baskets. A dawdling waterfall of sunlight beamed through the bay window, casting a gilded aura around their disheveled nests of Sunday-morning hair. With contrasting hand strength, they each shook plastic eggs…
“Chewie, we’re home.” Just as Han Solo uttered these words when he stepped aboard the Millennium Falcon in “The Force Awakens,” I felt a similar tinge of nostalgia and excitement upon returning to my favorite movie theater after an entire year.
According to my mother, my columns are the first result when you Google “Evrysdi (risdiplam) denial.” Which isn’t surprising. I’ve written several scathing columns about the application process, from verifying my diagnosis to correcting blatantly false insurance claims. The squeaky wheel gets the grease, or so the…
I recently ventured on safari with my heart and soul to take a look around at what growing a caregiving team means to me. My intentions established a touchstone from which I can construct a hospitable living space for change and growth. Now that perspective has been gathered…
Growing up, about the closest I got to yardwork was burying some poor mussels I’d brought back one summer from a family vacation on the Texas coast. Somehow I thought that hauling a handful or two of the already smelly critters in a shoebox of sand all the way back…
Ever the dry self-deprecator, I send my Chinese New Year column to my dear friend Brianna with a message stating, “I sound like a gremlin here. Which is fine with me.” (Translation: “Yikes,…
I see things that aren’t there. The writer in me realizes that, at first blush, this sounds like the opening line of a young adult novel. Take, for example, Maggie Stiefvater’s “The Raven Boys,” which opens with, “Blue Sargent had forgotten how many times she’d been told that she would…
My wheelchair van pulled up outside of a vaccination clinic downtown where I would receive my first dose of Moderna’s COVID-19 vaccine. This was one of my biggest outings in over a year. Like many in the SMA community, I made the choice to limit most of my excursions to…
