It’s a running joke in my family that, if we had the money, we’d build me a robot caregiver like Baymax from Disney’s “Big Hero 6.” Training human caregivers is nothing short of exhausting. Humans need food and sleep, they forget things, and most problematic of all, they have their…
Columns
While I understand that inanimate objects cannot have a mind of their own, there’s a lamp in my bedroom that would kindly disagree. I’ve had this lamp for a couple of years now. It’s set to a timer that turns on every night at 11 p.m. and stays lit until…
In my previous column, I discussed how nurses are recruited and hired by a home health agency, as well as the interview and training processes necessary to work on my case. In this column, I’d like to explore what it takes for a nurse to remain in this role,…
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…
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…
