As far back as I can remember, I have had an affinity for all things scary, creepy, suspenseful, and macabre. From “Alfred Hitchcock Presents” (which includes books, black-and-white TV reruns, and movies), to true crime drama, thriller fiction, and “The Walking…
Columns
Our 10-year-old daughter Ella, the youngest of three children, was born with spinal muscular atrophy (SMA) type 2, and needs help with many tasks throughout the day. In the mornings, I get her bathed, dressed, and ready for the day. If she needs to…
My Body Is My Home
I write a lot about the body. It’s inescapable in my line of work. I identify as disabled, and more than that, my disability is painfully visible. But my interests are rooted in the metaphysical. If I’m not writing about mental health, which has everything to do with physicality…
Spinning Webs of Resilience
I’ve been grieving this month. On some days, the weather was impeccable. Morning dew twinkled on silk linens of freshly spun spiderwebs. The air smelled of sun-crisped leaves dipped in salted caramel. Other days were filmed in grayscale. Winds howled through my window frames. Ragged clouds hung in the sky,…
Our 10-year-old daughter, Ella, who has SMA, loves to sing. She’ll ask her mother to print out song lyrics and then sit at the kitchen table and sing. Her voice is strong, and her pitch is perfect. She has quite a range as well. During…
Adapting to a Season of Change
Around the corner from my house there’s a shopping mall that’s stood as an iconic symbol of my small hometown for decades. It’s across the street from the high school my sister and brother-in-law went to, and it’s also situated near my go-to Barnes & Noble store, as…
In Defense of Cybernetics
If you’re a member of the SMA News Today Forums, you might know that I trialed the JACO robotic arm a few months ago. When I heard that Numotion was servicing my area of the U.S., I decided to give it a shot. Why not, right? I’m already…
What was the last spontaneous thing you did? Maybe you suddenly decided to treat yourself to ice cream, bought those shoes that have been calling your name, or went for a drive on a nice day simply because you felt like it. I enjoy a bit of spontaneity from time…
I’m still trying to wrap my head around this one: I will be turning 30 at the end of the month. To keep my columns professional, I used a period for that previous sentence. But please know there were many exclamation points swirling around my brain. This milestone birthday is…
Dreams of a White Picket Fence
When I began daydreaming about the kind of house my husband, Randy, and I would someday own, my vision included a big covered porch with a swing, a roomy yard with lots of trees, and a white picket fence. Gloria, our realtor in Fort Worth, Texas, had…
Recent Posts
- The transition to adult healthcare brings both fear and gratitude
- Early nerve-muscle connection flaws set stage for SMA damage
- When fate tested our theory that things happen for a reason
- Evrysdi boosts motor function, quality of life in Asian SMA patients
- Learning to resolve conflict with friends who are also caregivers
