A winter snowstorm can feel magical — until it doesn’t

Whenever it snows, I feel like I’m inside a snow globe. The sparkling flakes daintily scurry down, covering the glistening trees and other surroundings. Everything feels magical for a moment in time until, suddenly, the reality of being in an actual snow globe hits me. I’m trapped.

Every year, I’m giddy with the first snowstorm of the season. And every year, that giddiness dissipates about 10 minutes in. I’ve always had a disdain for winter given the fact that my power wheelchair is unable to trek through snow. As a child, this contempt derived from my inability to partake in snow activities due to SMA. I envied my brother and his friends who could freely go outdoors to have snowball fights and build snowmen. I’d watch from the window and feel isolated from my peers.

Now, as an adult, snowmen and snowballs are no longer my concern. Navigating pathways with my wheelchair that aren’t properly shoveled or sanded is. If I’m not careful, I’ll spin out on patches of ice or drive over the bumps of impacted ice chunks, causing my limited functioning hand to lose its grip and fall off the wheelchair’s joystick. I also feel muscle stiffness and joint pain from the cold.

More often than not, these obstacles are unavoidable and contribute to the difficulty of facing the winter elements, leaving me confined to my home. Just like being stuck inside a snow globe, the winter months make me feel trapped and isolated from the world. Everything may appear beautiful for a few fleeting moments, but when all is settled, the magic is gone. The bone-chilling cold sets in. The skies become grayer and stormier.

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February 7, 2023 Columns by Kevin Schaefer

Sleeping problems are another part of the SMA package

Counting the minutes

In my last column, I noted that my body craves rest at this time of year. The winter season is a hibernation period for me. Other external factors contribute to my hibernation as well, such as colds, the flu, and other illnesses. The snow and frigid temperatures make traveling by wheelchair difficult. The sun sets at 4:30 in the afternoon, fueling my seasonal depression.

These factors not only play a role in my tendency to hibernate but also in the feelings of isolation I experience during this season. Yes, I know I’m being productive by treating this season as an opportunity to rest and that my body will benefit from it. But it’s a delicate balance trying to thwart these feelings when I feel trapped in my own home.

The other day, I checked the National Oceanic and Atmospheric Administration solar calculator to find out how many minutes of sunlight my town will gain by Jan. 31. To my surprise, it was a whopping 49 minutes. This nugget of information was exactly what I needed — a glimmer of hope in a dark and dreary season. Day by day and minute by minute, I’m getting closer to the moment when I can shatter through my glass globe of isolation and venture out into the real world again.

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.