Navigating another winter while living with SMA
Stephen King’s “The Shining” shows what happens when someone spends too much time cooped up indoors.
Sure, supernatural forces provide the basis for the main character’s descent into madness, but a defining element of the novel is that it takes place in a remote hotel during winter snowstorms. I imagine a different narrative had King set it in a heavily populated beach resort during the summer. Here, winter itself is a key player in the story.
As an adult living with SMA, my winter includes cozy comfort and relentless isolation. On the one hand, I like the holiday festivities that accompany the season and the time it offers me to watch a surplus of movies and shows. I have plenty of time to stay productive and relax, and thanks to video calls and virtual meetings, I remain connected to people. Hibernation certainly has its benefits, and so far this season I’ve avoided a sense of cabin fever.
The downside is that when I venture out and leave my house with temperatures at 40 F or below, I must plan every move with calculated precision. As soon as the cold hits my fingertips and spreads throughout my body, I have to move quickly to minimize my time outside. Yet if I move too fast, I risk losing control of my wheelchair’s joystick and crashing into the nearest surface. Plus, wearing gloves and additional layers of clothing makes operating my chair more difficult.
Resilience and adaptability required
Winter weather has always been challenging for me to navigate, but it’s become more impactful as my body experiences disability progression. Whereas I used to be able to get up and down my accessible van’s ramp with ease, now even going short distances proves much more of a hurdle, especially when temperatures plummet.
Kevin Schaefer uses beach towels to adapt to winter’s challenges. (Courtesy of Kevin Schaefer)
Toward the end of last year, I went to a friend’s wedding reception on a cold evening in mid-December. Although we were inside a heated tent and I kept my hands tucked underneath my winter poncho, eventually, my already limited upper-body strength called it quits. When it came time to leave, I felt a bit like the frozen-in-ice Jack Torrance at the end of the movie adaptation of “The Shining.” Despite my best efforts, I couldn’t muster enough energy to propel my joystick forward with my right hand.
Fortunately, my friends went the extra mile to get me home safely. I guided them through the steps of putting my chair in its manual mode, and from there they pushed me up the ramp and inside my van. I’m always reluctant to let others do this, as it strips away my sense of autonomy. Sometimes, though, I have to relinquish control to survive.
As soon as I got home that night, I stationed myself next to my treasured space heater in my office and waited for the warmth to revitalize me. This experience pushed me to be even more cautious in the following weeks and to be extra selective about when I go out.
Still, one of the advantages of having a disability is that it can be a catalyst for creativity and resourcefulness. We managed to get snow here in North Carolina in mid-January, and even after most of it had melted, there remained splotches of ice on the ramp I use to get in and out of my house. One day, when my mom and I were going to lunch, we knew we’d need to ensure I didn’t slide or get stuck. Her cleverness came into play as she placed beach towels along the ramp to cover the ice. This made it safe for me to drive, even if these accessories may have perplexed the average onlooker.
I’ve navigated many winters with SMA, and like every other aspect of my life, this time of year requires resilience and adaptability. If only I could attach my space heater to my chair.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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