My heart is warm this winter, thanks to the support of my village
Cold weather aggravates my FA symptoms, but I'm grateful to have help
It’s so easy to get down about the daily struggle of becoming progressively more disabled. Every single day, more of my abilities and independence slip away, and I rely more heavily on my village for support.
Although this brings up a lot of hard, sad, heavy, difficult-to-process feelings, it also makes me proud and grateful. I realize that, with the help of my village, I can be stronger than Friedreich’s ataxia (FA), and I am so thankful for that. I know that not everyone feels that way and that I’m one of the lucky ones.
This mix of emotions about my deteriorating abilities is always more undeniable and apparent in the winter. For a lot of medical reasons that I’m not fully qualified to explain, my body doesn’t work as well when I’m cold and my disabilities become more exaggerated. My muscles tense, making my movements more spastic and, frankly, unsafe. Because of this, I depend on help with tasks that I can usually complete with my mobility aid.
For example, I have shower rails and benches that allow me to safely and independently get in and out of the shower. In the winter months, I put a space heater in the bathroom to help relax my muscles and hopefully encourage my body to function as “normal.” I have been terrified of bathroom accidents ever since I obliterated my ankle during a fall in 2018. I was getting ready to shower, tripped over nothing, and dislocated and broke my ankle. This resulted in an intense surgical reconstruction and rehabilitation.
But even with the heater and my arsenal of safety measures, I don’t feel confident or safe showering by myself during the colder months. I wait until my husband is home and available to spot me while getting in and out of the shower. Thankfully, he works from home and can help me whenever I need him.
I move more slowly and deliberately in the cold. Everything takes extreme concentration, which is exhausting. I tend to shy away from leaving the house when the temperature drops, unless I have someone to help steady me by keeping a hand on my elbow or my walker, because I flat-out don’t trust my body. While that is an admittedly horrible feeling, I once again feel so lucky that I have people who are willing and able to assist me.
The power of kindness
Yes, I wish I didn’t need help. I wish I didn’t need countless mobility aids in order to function. I wish I were healthy. But I’m so grateful that, with the help of my village, both human and inanimate, I can contribute to and experience life.
In the big scheme of things, after a decade of living with a disability, I think that people are generally awesome. Yes, we are all flawed individuals, and a few choice encounters with cruel or selfish people stand out in my mind. But in general, people are kind.
When I look back on this winter or brace myself for future ones, I hope and pray that the kindness I have benefited from will warm my heart. I know that my FA progresses a little bit every day, so future winters will be different and likely more challenging for me. But I choose to think that I’ll be able to handle them just fine.
Come what may, whether it’s blizzards, freezes, accidents, or ignorant people, my heart is warmed by the goodness I’ve experienced so far in this life.
“God has chosen you. You are holy and loved by him. Because of this, your new life should be full of loving-pity. You should be kind to others and have no pride. Be gentle and be willing to wait for others.” — Colossians 3:12
Note: Friedreich’s Ataxia News 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 another 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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