The changing seasons trick me into thinking my disease has progressed

Some people live for cold weather. They hate the heat, for some strange, inexplicable reason, and live for the day when they can pull out their chunky knit sweaters and thick, fuzzy socks.

I am not one of those people.

Aesthetically, I love the colder months. I love candles and quilts and gray, rainy days. I love curling up with a book and not emerging for several hours. I’m a homebody by nature, and the cold weather gives me an excuse to rarely, if ever, leave the brightly lit comfort of my temperature-controlled studio office.

Pragmatically, though, cold weather does not agree with me. I miss the sun. (As I write this, we’re a measly two days into the end of daylight saving time. I’m already counting down the days until the winter solstice.) My parents’ electricity bill reflects my passionate love affair with my space heater. Winters here in Minnesota are harsh and cold and long.

I’ve always been a freeze baby. But it’s only been during the past few years that I’ve realized just how affected I am by cold weather — mentally and emotionally, but physically, too.

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On a more basic level, my SMA restricts my ability to wear weather-appropriate clothing. Once upon a time, I used to thrive in cable-knit sweaters; now I no longer have the strength to move my arms in anything heavier than a lightweight crew neck. Jackets are out of the question, as are mittens and gloves. Scarves are an option, but they can only do so much.

I’ve settled on a simple T-shirt with something thrown over my upper body, such as a shawl or blanket. That way, I can still move my arms and hands. But the fact remains that I am cold all the time, which wreaks havoc on my already weak body.

It won’t be like this forever

The cold doesn’t just frustrate me. It demoralizes me. It saps me of energy. The fatigue is so intense that I find myself unable to do much of anything. It takes me forever to warm up, and even then, I’m so physically exhausted that my body malfunctions. I can barely think, let alone move. I feel, literally and figuratively, dead inside.

I’ve written a lot about cycles in this column. How every month I’m convinced I’m dying until I realize that my hormones are adjusting in anticipation of my period. How every winter I find myself in the blackest of funks only to remember that, duh, it’s winter; of course I’m experiencing seasonal affective disorder. I forget and remember and forget and remember, and every time it feels unprecedented, like I’ve stumbled upon something that will change my life.

The change in seasons is no exception. Every year, right around this time, I start feeling tired. I struggle with things like leaving the house or driving my wheelchair. I start to wonder if my SMA is progressing. I tell myself that Evrysdi (risdiplam) halts the more extreme cases of disease progression, but the thought remains — the niggling fear that I’m losing something I’ll never get back. How long until I can no longer type? How long until I’m no longer me?

Then I look out the window, at the backyard I’ve been growing alongside for 25 years. The trees are bare. The grass is green, but the kind of green that presupposes a death in the near future. According to the calendar, meteorological fall doesn’t end until Nov. 30 in the Northern Hemisphere, but I know in my bones that it’s winter now. The sun sets at 4 p.m. The fireplace pumps out heat all day long.

I look out the window and remember that my body is trying. It wants me to survive just as much as I want it to. My body is trying, and I am safe, and someday soon, it will be warm again, and I will remember how to do all the things I forgot. It won’t be like this forever.

I can take comfort in the dark knowing the light will return, as it always has and always will.

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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.