Persistence is key when living with SMA

On a rainy day in April, I write the final words of my third novel: “The End.”

If you follow me on social media, you’ll know this book has not been without its hiccups. I won’t get into the nitty-gritty of it, largely because I chronicled everything on Substack, but suffice it to say that 2023 was a period of intense reflection for me. Did I really want to be an author, or had I just become so accustomed to the idea that I struggled to imagine anything else?

I love stories, so the answer felt obvious to me, but I still took the time to really sit with the question. Returning to writing was thus a momentous act. Inevitable though it was, it was still a decision on my part — a conscious choice to recommit to something I had loved my entire life.

Drafting my third book, “An Angel in the Garden,” was fraught from the beginning. I felt like I had something to prove, not only to those around me but to myself as well. It was a make-it-or-break-it kind of moment.

I was determined, but that didn’t make the process any faster — or less painful. I often felt like I was spinning my wheels, putting in a lot of effort without much to show for it. I wanted to give up. But I didn’t. And now I’m on the other side, looking at 111,478 words that, not too long ago, I thought would never actually exist.

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Building the muscle of persistence

The past couple of years have forced me to develop my ability to persist.

Finishing my master’s degree in the middle of a pandemic.

Searching for a cure for my various untreatable medical conditions.

Struggling to find caregivers in a world that doesn’t seem to value disabled lives.

Writing book after book, never knowing if they’d amount to anything.

I almost gave up so many times, almost accepted my mysterious rash, lack of caregivers, or half-finished book as an unalterable aspect of my life. But I persisted. Not everything has been fixed — I’m still dealing with that dang rash — but I’ve seen for myself the kind of difference persistence can make.

The only way out is through

Life with SMA is an exercise in persistence. There are so many things you can’t change. Meanwhile, the things you can change are so complicated that the very idea feels impossible. More often than not, you have no choice but to white-knuckle your way through, trusting there’ll be relief, that one day soon you’ll look back and realize you made it through.

There is virtue in giving up. I say that as someone who is allergic to failure. Sometimes there is no alternative, and the only way forward is to stop moving.

But there is also virtue in persistence — in, dare I say, dogged stubbornness. You refuse to give up, even when the going gets tough, even when it feels like the entire world is against you. You schedule that discovery call with a licensed naturopath. You post that ad for part-time caregivers. You write your daily 1,000 words, even when it feels like pulling teeth, because you know that in a few months you’ll look back and realize that what you thought was trash was treasure all along.

You persist. Not because it’s trending on Instagram, but because you’ve seen what lies on the other side: the life you want, waiting for you.

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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.