A look back at 2023, a year of contraction

On a Sunday morning in mid-November, I opened my email to a newsletter from one of my favorite writers, Catherine Andrews. In it, she named the past 15 years of her life as being particularly contractive. She struggled with everything, from her relationship with alcohol to dating and creativity. Finally, after what seemed like forever, her burden became lighter. Her period of contraction came to an end, and her period of expansion began.

Catherine’s words resonated deeply with me. I’ve found 2023 particularly difficult. I switched wheelchairs, which is a pain by itself. Then there’s the surprise Evrysdi (risdiplam) denial that left me fatigued and struggling to keep up with my daily life. My body was going through plenty on its own, given that I’d started naturopathy in late January with the hope that I could solve some of my more chronic health issues.

I was also having a hard time with a completely unexpected disruption in my writing career. My faith in myself was put to the test. I had to ask myself if I seriously wanted to write books. Was I really cut out for the publishing industry, or had I fooled myself into thinking I could achieve my dream of writing stories for a living? I thought I knew the answer to these questions. I really did. Then 2023 happened, and I realized I wasn’t nearly as certain as I thought I’d been.

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A ‘wintering’ year

This year was, in many ways, a return to square one. A new wheelchair. A new insurance plan. A new medical professional. A new book. I had to start from scratch, which wasn’t at all on my bingo card for 2023. All my plans went out the window. In their place was an utter lack of certainty.

I had no idea what was happening. And I was terrified.

I’m still dealing with the aftershock of everything that’s taken place. But now that I’m through the worst of it, I can feel myself starting to chafe at the bit. I accomplished nothing this year. Nothing of note, anyway, which is hard for me to admit as someone who thrives on achievement. I want to cross things off my to-do list. I want to look back on the past 12 months and know in my bones that I did my best. But I can’t, because 2023 was a “wintering” year.

The year 2023 was one of contraction.

“Constant expansion is not possible for anybody,” Andrews writes, “nor would it be healthy.” Which is something folks with SMA know all too well. Our very lives are a testament to the cycle of expansion and contraction. We experience an uptick in energy, so we leave the house and meet up with friends and scurry to do all the things we’ve put on the back burner. Then our bodies fail, and we find ourselves grumpy and sick and in a general state of blah. We hit our limit, and now we have to rest before we can even think about living again.

This pattern is found everywhere, from the seasons to the rhythm of sowing and reaping. Abundance is followed by a fallow period. We plant, we harvest, we wait, and then we do it all over again. But still I struggle. Still I rage and sob and beat my little fists against the glass of myself on the off chance a temper tantrum might do the trick.

So much of life is out of my control, from the progression of my disease to the person assigned to my Evrysdi appeal. I can’t contribute to society the way others do, so I work extra hard to ensure the things I can do make up for the train wreck that is me. My rational mind knows that a published book won’t make everything better, but my emotional brain is convinced the entire world would see my worth as a human being if I could just accomplish this one small thing.

So I push. I run myself ragged. I try so hard. But I always end up here, waiting for crops to emerge from the cold, hard ground.

The thing about cycles is their predictability. You always know what happens next. A period of contraction might feel like it lasts forever, but one day, eventually, the sun will rise, and the world will stir, and the body will remember how to be a body. You can bet on it.

So I do. Even now, with 2023 coming to an end and nothing but a tired heart to show for it.

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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.