Here’s why I navigate the months of winter without a coat

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by Alyssa Silva |

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With a brisk chill in the air and an impending snowstorm near, I’m reminded that it’s officially the time of year when people start asking me, “Where’s your coat?”

It’s a valid concern on their part, I suppose. After all, when the weather drops below freezing, the right thing to do is bundle up. So when someone like me comes along without a coat, I look out of place. Yes, I admit it. But oftentimes, the people asking are strangers who don’t know my story or that there’s a reason why I don’t wear coats when it’s cold. Allow me to explain.

I don’t know that I would consider myself fashionable, but I do put effort into how I dress and present myself to the world. However, shopping as a disabled woman due to SMA is challenging. With my contractures, I have trouble getting my limbs into clothes that are too tight. Therefore, my clothes must be loose, but not too loose that I look like I’m being swallowed by fabric.

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My scoliosis and small stature present unique obstacles as well. Finding clothes that are flattering for my body shape and not from the kids’ department is hard to come by. Then, there are shoes. My ankle-foot orthotics make shoe shopping nearly impossible. So I frequently forgo shoes altogether and wear longer pants or skirts to cover my feet. No one has to know.

But the bane of my fashionable existence will forever be winter coats or thick, heavy sweaters. Wearing sleeves adds extra weight to my arms. And given my limited mobility and weakness, I struggle to work against it.

When I’m in my wheelchair, coats and sweaters make it difficult for me to drive. It’s tiring. It’s effort and energy I could expend elsewhere. And it’s not worth the hassle to me. Albeit unpractical for chilly days, wearing clothes with thinner material allows me to move more freely and be more independent in my wheelchair. It’s something I always consider when shopping.

Aside from contending with heavy sleeves, coats and thick sweaters also mean added bulk in my wheelchair. My seat was molded specifically to my body to give me the most support and comfort. In other words, if I’m not snug into the mold, I grow uncomfortable and develop pain in my back and neck. Alas, if I choose to wear something bulky, it changes my position in the wheelchair, thus causing me a lot of discomfort. Getting me comfortable is an art that few can master. And for that, I would rather be cold than warm.

In my world, practicality beats staying warm. Of course, I don’t particularly enjoy the cold. The way it seeps into my bones and causes my muscles to stiffen is not something I look forward to every year. But it doesn’t bother or hinder me, either. The only time I’m spending outdoors in the winter is when I’m going from my car to a building. So, realistically, being cold only lasts for a few minutes.

In the trade-off between staying cozy and maintaining comfort and the ability to drive my wheelchair, I always choose the latter. My exposure to the cold during the next few months is minimal. So, as below-freezing temperatures near and the questions about my coat (or lack thereof) persist, I will continue to embrace my unconventional approach to my cold-weather attire.

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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