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…
Columns
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…
On April 10, the United States will celebrate Siblings Day, a day to honor and appreciate the bond we share with our siblings. I happen to have the best one around, so I asked if he’d do an interview with me to share his perspective on living with SMA…
In North America, where I reside, an equilibrium springs forth this time of year. Because of the spring equinox, the dance of dominance between daylight and nightfall is at a point of viridescent intermission. The sleep-wake cycle rises and sets in mutual agreement. Together, the crescent moon and diluted sun…
In my previous column, I shared how sometimes our advocates come from the unlikeliest of places. Yes, even politicians, who some believe are the embodiment of greed and corruption, can make an enormous difference in our lives. The mystery senator I spoke of…
BARK! BARK! WOOF! WOOF! The guest staying in our rental cabin had come down to the house. Our dogs, Honey and Maple, were banished to the kitchen until our guest returned to her car after a brief visit. I sat down to get back to work. BARK! BARK! WOOF! WOOF!…
