Words always come to me when I need them. Lines by Ada Limón, Anne Boyer, and Marie Howe act as life preservers, guiding me back to my center. When life gets tough, I always find myself at the feet of Julian of Norwich. “All shall be well,” she says,…
Columns
Everyone experiences times when they feel overwhelmed by problems to fix, regardless of whether they have SMA, as I do. My life right now is a work in progress, and there’s nothing wrong with that. I’m currently addressing two main issues: frequent illness and a lack of nursing coverage.
First in a series. Maybe it (sadly) goes without saying, maybe it doesn’t, but if you Google “spinal muscular atrophy actor,” you won’t find a single SMA patient with a long filmography filled with recognizable projects. You’ll find Alexa Dectis, the child actor turned entertainment lawyer and one…
One of the most common questions new friends ask me is: “Do you drive?” When I’m feeling snarky, I refer to my wheelchair and respond: “All the time.” But I know they are actually wondering if I drive a car. It’s a valid question because many people with disabilities do…
I’ve long dreamed of visiting the Georgia Aquarium in Atlanta to see their famed whale sharks. Something about the gigantic yet peaceful sea creatures tugs at my soul in a way that made me crave seeing them up close. Eventually, that dream became a reality as well as…
I was born on an Air Force base in Tacoma, Washington, but I grew up in Fort Worth, Texas. Texas was a wonderful place despite the chiggers, mosquitoes, and traffic. It was also oppressively hot in the summer, when only ice-cold watermelon, iced tea, ice cream, and Mexican food sounded…
“What are we making for dinner today?” my friend asks as we head to my kitchen. I love when she says “we,” because she knows I like to be an active participant in this process. It isn’t just her making something for me; it’s both of us making something together.
“Time for your whirlwind 20s, babe!” When my best friend and fellow SMA News Today columnist, Brianna Albers, said that a month ago, I couldn’t have imagined how much I would feel her words. She’d said it in the context of me wanting to meet some (admittedly questionable)…
As much as I love to read, sometimes the physical act of doing so isn’t easy. Books quiet my mind. They transport me to another world where hospitals and doctors’ offices aren’t the norm. However, my hands and fingers don’t always cooperate when I want to read. Something as simple…
What comes to mind when you think of Labor Day? For some people, it might mean a cookout, a day trip to the lake, or a last, desperate dip in the swimming pool. For me, it conjures up memories of hairspray, big puffy dresses, multiple ringing telephones, video cameras, and…
