Columns

When I was growing up, I gravitated toward creepy, hair-raising movies and books. I loved being spooked, especially on Halloween. I’d become deliriously giddy when the autumn wind in my native Fort Worth, Texas, howled during trick-or-treating. By the time I became a teacher of kindergarteners…

“It must be nice sitting in that thing all day.” Having lived with SMA for 32 years and used a power wheelchair since I was 2 years old, I’ve heard some version of this comment many times. Those who read my column regularly know that I enjoy making…

“Take the burden from my arms/ Take the anchors off my lungs …”  This is the opening line to “Live It Well,” one of my favorite songs, by Switchfoot, one of my favorite bands. I woke up listening to it last week, and was struck by how…

In the true fashion of a passionate actor, Neil Newbon opens a TEDx Talk by imitating an ape — a choice inspired by his role voicing the lead ape in the video game “Planet of the Apes: Last Frontier.” Throughout the presentation, he effortlessly switches between other characters…

“If you need anything at all, don’t hesitate, just give me a yell!” Pam says on Saturday nights as she tucks me into bed. “OK, you, too!” I reply, and we giggle and bid each other good night. She closes my bedroom door and goes to sleep in the adjoining…

As a lifelong proponent of therapy, I go through phases. Sometimes I don’t need the support. Sometimes I do, so I go through the whole rigamarole of finding a practitioner I vibe with. It’s not a fun process. I know so much about therapy that I am, in a word,…

The fall of 1996 brought the usual glorious colors, cooler weather, and a whammy of a news bulletin: I was pregnant. In our 40s, my husband, Randy, and I adjusted as well as possible, as did our equally stunned son, Matthew, who was 10. Our ecstatic daughter, Katie, then 7,…

A few years ago, a good friend of mine named Essie found out that her newborn daughter had been diagnosed with SMA. She reached out to me then, as she knew I had SMA, too. She had so many questions, so I went to my mom because she is…

Have you ever solved the world’s problems? I have. Well, sort of. That’s what we say we’re doing when Mom and I get together for coffee with our friend Connie Chandler, a fellow SMA News Today columnist. Our deep conversations often feel like they provide answers…

Last in a series. Read part one. “How are you feeling today, Sherry?” my director asked. We were about to rehearse for a play we’re working on. I’m still new to performing, and SMA makes me prone to fatigue, so before we start, she always checks on how…