Columns

The quiet miracle of still living with SMA

Living with spinal muscular atrophy (SMA) means my body doesn’t always warn me before it spirals into crisis. One minute, I’m sleeping peacefully. The next, I jolt up, gasping for air. My ventilator blares, its alarm shrill and relentless. Another mucus plug. Again? Someone will be here soon.

What I would tell my 13-year-old self

My late mother, who was musically gifted, fostered an appreciation of quality music in our family. I took enough piano lessons from her to serve as her other half in a two-piano duo that lasted for decades. Whether we were performing for others or simply our own enjoyment, our go-to…

Taking care of my gynecological health with SMA

Certain things happen when you turn 21. You come of age. You can legally drink in every state in the U.S. And, if you have a cervix, you start getting regular screenings for cervical cancer. I didn’t know that when I turned 21. I wasn’t sexually active at the…

How I make wheelchair doughnuts and young friends

“Connie, can we make some doughnuts?” Two-year-old Eden, with her blond pigtails and soulful blue eyes, asks me this question on a weekly basis. “Of course, sweet girl,” I reply and let her lead me to the carpet in the open space in my living room. “And how many doughnuts…

What it really takes to take me out to the ballgame

If you’re American and have attended a baseball game, then I imagine you’ve probably heard the song “Take Me Out to the Ball Game.” Known as the most beloved song in baseball, this classic tune has been an anthem of summer for decades. For most, it’s joyous. It’s…