Pushing back against the weight of SMA amid the change of seasons
The coming of autumn reminds me that my physical needs are always changing
“Take the burden from my arms/ Take the anchors off my lungs …”
This is the opening line to “Live It Well,” one of my favorite songs, by Switchfoot, one of my favorite bands. I woke up listening to it last week, and was struck by how perfectly it described how my body was feeling. I know the lead singer, Jon Foreman, is a brilliant poet, but with lyrics like these, I wonder if he’s had personal experience with a rare disease like mine.
There are some things I love about the fall season — the vibrant red and gold leaves, the smell and taste of warm spices, and the coziness of blankets and socks. But the change of season is also extremely hard on my body, and I know some of my colleagues here have written about these impacts. We struggle with breathing clearly, moving our arms and fingers, and keeping up our energy.
I’m not sure why these issues plague us at this particular time of year. Maybe the colder weather tenses up our muscles. Maybe we grow unaccustomed to the added weight of long sleeves on our arms, or maybe it’s a complex combination of factors.
What I can control
I was diagnosed with SMA as a toddler and have lived with muscle weakness my whole life, so it is normalized for me, but I know it can be hard for able-bodied people to understand. Why can’t I just clip my seatbelt, get my shoes on, or sweep my hair off my face? These things are effortless for someone whose body functions normally.
But imagine sitting in a chair, wearing a weighted vest, with an elastic band tying your elbows to your sides and your knees to the legs of the chair, 10-pound weights strapped to your wrists and ankles. Eventually, you may adapt to these restrictions, but incrementally the elastic gets tighter and the weights get heavier, so you have to learn to re-adapt, over and over again.
Whenever those bonds get tighter and gravity presses heavier on me, I can’t help but wonder if this is just an off day or if this is my new normal. I feel frustrated, discouraged, and ashamed that I need to ask for even more help than I did before. To be honest, it’s tempting to despair.
This is a dangerous and crucial place for me, a crossroads I’ve found myself in repeatedly over the years, because, while I have very little control over the neuromuscular degeneration that defines my disease, I do have control over how my heart, mind, and spirit respond to it.
“Awaken, oh my soul/ Every breath that you take is a miracle …”
I can’t know how many more years I have to live, or how much physical strength and mobility I will maintain until then, but I do know that my life has value and purpose, just like yours. Each new challenge is a chance for me to practice a new level of patience, humbleness, and graciousness. With each new fear I face, I can choose to pursue a deeper understanding of joy, hope, and peace.
As the seasons and my physical needs change, it’s important that my habits, attitude, and perspective change, too — in a positive way. That means being intentional about my nutrition, water intake, and respiratory treatments. It also means showing myself grace and paying attention to when I need more rest. It means taking time to explain to my friends how I need their caregiving to “upgrade.” It means looking for opportunities to serve and show real love to others. And it means trusting God to give me everything I need, one day at a time. After all, life is short, so I want to live it well!
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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