Living through the waiting with SMA

Every December, I write an end-of-the-year column. I try to make it inspiring, or at the very least optimistic, but sometimes I can’t even accomplish that. Last year’s wrap-up was essentially a long-winded way of me saying, “See you never, 2024, and good riddance.”

For the most part, though, I really do try. Just last night, I was lying in bed, unable to sleep, and running through all the possible approaches I could take to this month’s column. I couldn’t think of anything. Well, that’s not true. I could, but nothing that really tripped my trigger. December in Minnesota is for languishing in one’s creativity.

I went through my mental list of topics I wanted to write about but hadn’t yet gotten to. Then I remembered what my life coach, Amber Bosselman, said at my last appointment.

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We were talking about my latest diagnosis, Eustachian tube dysfunction. I was essentially told to “wait it out,” which didn’t sit well with me for several reasons. I’m not good at waiting. One might say I’m terrible at it. As someone with, uh, pretty severe medical trauma, I really struggle with letting things fall as they may.

When Amber asked what waiting looks like for me, I didn’t know how to answer her. I’m pretty sure I said something along the lines of, “Well, I guess I’m just … waiting … for things to change.”

That stopped me in my tracks. It’s a sentence I’ve said repeatedly over the past few years, often with regards to my health.

I’m just waiting to recover from my near-death experience.

I’m just waiting for my chest to feel less tight.

I’m just waiting for my ears to drain, for the world to stop spinning, for things to settle down.

Do you ever feel that way? Like you’re just waiting for your body to get itself together so you can start living your life?

Waiting is inextricable from life with SMA, isn’t it? Waiting for appointments. Waiting for test results. Waiting for the world to see disabled folks as whole human beings. It never ends.

The problem, at least for me, is the thing I’m waiting for is probably never going to happen. My body will never be fixed. I will never feel 100% healthy. There are days, of course, when things are good, and I feel somewhat in control. But those days don’t last. They’re temporary, and inevitably I end up right back where I started — waiting for things to change.

I would be remiss if I didn’t mention that my wise and all-knowing parents have tried to teach me this before. But it’s different when the lesson is coming from someone who has SMA and knows what it’s like to wait on your health. It’s easy to say that life is in the waiting; it’s harder to say that, and to believe it, when you are trekking through the muddy pit of yet another waiting period.

What does this mean for the coming year? I would love to say I’ll stop waiting, but I know better than that. You can’t kick a bad habit overnight. But I can try. More specifically, I can live while I wait.

I will always be wrestling with a new and annoying symptom. I will always be courting a fresh wave of health anxiety, just like I will always be waiting for my body to get its act together so I can leave the house and see friends and, like, live. There will never be a day when everything is perfect, my energy is stable, my wheelchair is comfortable, and I don’t have a migraine somewhere in my brain. I will never be free.

Maybe I don’t have to be.

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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.