Throughout the summer, my favorite pastime is just to be outside, for long walks, porch talks, picnics — any reason to bask in the sunshine. But as the days get cooler and shorter, I prefer to be inside and find crafty things to occupy my time. Over the years, I’ve…
Columns
One night, I was woken by a beeping noise. That’s not altogether unusual, because alarms from my medical equipment occasionally sound throughout the night. I’m so accustomed to it that my mind sometimes incorporates the sound into my dreams instead of waking me. But this one was unfamiliar. What was…
Autumn and I have always had a complicated relationship. Its golden hues, pumpkin-patch allure, and cozy feelings entrance me like no other. Yet, amid this season’s spell lies one hard truth to accept: Winter is coming. For those of us living with spinal muscular atrophy (SMA), this means more…
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,…
