Even in the Midst of COVID-19, We Must Own Our Time

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by Brianna Albers |

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As I write this, my room glows in the midafternoon sun. Sometime last year, I invested in a suncatcher, so there are rainbows everywhere — pastel sunbursts that are there, then gone.

It’s unseasonably warm in Minnesota today, so the snow is melting, dripping steadily off the roof.

According to the calendar suspended above my desk with a piece of twine, it’s Jan. 18. But it feels like spring — in the world, but also in my head. For a brief, blessed moment, I can pretend that winter is waning.

The key word, of course, is pretend.

We’re coming up on year two of COVID-19. Most people mark the beginning of quarantine as the beginning of the pandemic, but I was preparing way back in January 2020, three months before COVID-19 started to dominate the news. In many ways, it feels unreal — so much has changed in so little time. But there are times when I feel every single day of those two years.

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With omicron ravaging the U.S., I find myself reverting to my early pandemic mindset: No visitors. No excursions outside the house. I forcibly shrink my life until it fits within the walls of my childhood home. On rare occasions, I let myself dream of the future — my upcoming trip to California for the annual Cure SMA Conference, for instance. But I’m still a realist. Nothing is certain, and at the end of the day, low expectations make for fewer disappointments.

Living during COVID-19 is still living

But there are glimmers. My caregiver and her daughters have been coming around again. I’m back to monthly massages (thank God). Life with COVID-19 is the definition of “one step forward, three steps back.” But I take my victories where I can, and remind myself that, as with all things, this too shall pass.

I find myself returning to a post by Yumi Sakugawa. In the early stages of the pandemic, she wrote, “Your life is not on pause or delayed. Your life is still happening, so then the question is: Are you fully awake to it, paying attention even if it is completely different from your idea of how it should be like in an ideal scenario?”

This is most applicable in quarantine, as we wait for the omicron wave to pass us by. But it’s especially relevant to folks with SMA. As someone with chronic pain and unpredictable bouts of fatigue, I find myself living for “the good days.”

Pain-free days. High-energy days. Bright-brain days, where depression is a distant memory, and I am convinced of my own lovability.

In that way, I write days off. Imperfect circumstances aren’t just a bummer — they’re a barrier. They keep me from living.

Idealism is important; romanticism keeps my head above water. But as someone who quite literally should not be alive, I am attuned to the passage of time. I know when I’m wasting it by wanting something else.

That isn’t to say that quarantine doesn’t suck. It does. But I am forcing myself to ask different questions. Instead of, “How can I make this period of time pass as quickly as possible?” I ask, “How can I find fullness here? How can I practice abundance?”

“There is only the present now,” Sakugawa wrote, “that is unfolding right before you.”

This is life. I am living. With every inhale and exhale, I make time mine.

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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.

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