A Groundhog With SMA and a Writing Machine Considers Her Shadow

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by Katie Napiwocki |

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SMA caregivers | SMA News Today | Main graphic for column titled "A Wildflower in the Wheelderness," by Katie Napiwocki

I’m a groundhog.

Well, symbolically, I’m a groundhog. I emerged from my burrow on Groundhog Day, 1986. 

I’m reminded of this each year my birthday rolls around, when my mom recollects her story about being in labor with me as the hourglass sands of Feb. 1 dwindled, and I still hadn’t arrived.

My dad, a distinctive concoction of stoicism and sharp wit, always kept jokes within a hand’s reach of his flannel shirt pocket. When the delivery room clock ushered in the small hours of Feb. 2, he exclaimed to the room, “Now that it’s Groundhog Day, maybe she’ll just peek out for a moment and go back in!” 

A memorable comment for a woman in a face-off against the diabolical throes of childbirth.

Seven more years would pass before the movie “Groundhog Day” was released — eventually epitomizing the universal personal hell for everyone living through a pandemic of lockdown proportions. (I don’t know about you, but the daily humdrum of the past year has culminated into the essence of monotonous madness for me. I’m ready for a new movie.)

When I was born, my parents weren’t yet aware of my genetic composition. They didn’t know it yielded a disease that would forever alter my physical ability to engage in life’s common landmarks the way most parents envision for their children. Another 32 years would pass before SMA was added by the U.S. Secretary of Health and Human Services to the Recommended Uniform Screening Panel for newborn screening. Now, the majority of U.S. states have prioritized SMA within prenatal screening efforts to identify its presence and offer treatment options to expecting parents. 

Back then, I was also a novice weather forecaster. After three and a half decades of working hard to substantiate the talents of my inner groundhog, I can say with absolute certainty: I’m still a terrible weather forecaster. Each and every year, I feel compelled to predict an early spring. Funny how it works out like that.

Because Groundhog Day falls midway between the winter solstice and the spring equinox, the groundhog is revered as a prophetic gatekeeper. The groundhog is a sidekick to new beginnings. It is a conductor of rejuvenation, a conjurer of spring rains, and a chaperone to the dawn of a fresh season.

The first and most memorable time I met a groundhog during the light of day was intriguing. While visiting a well-known cemetery on a gloomy day of vacation, a fat creature caught the corner of my eye. It waddled toward a timeworn gothic pillar that had tipped off-center, revealing a dark pile of earth mounded around one corner of the base. I watched the groundhog approach the doorless passageway of its posthumous abode. It wiggled between gravestone and dirt, disappearing into a dwelling that, I imagine, boasted the architectural and bakery comforts of a lavish Hobbit hole.

An oracle of seasonal change, the groundhog listens to intuitive guidance from its shadow. A groundhog will rouse from the depths of slumber to assess the odds of Mother Nature’s moods. If the groundhog’s shadow is obscured by clouds, the declaration of an early spring is upon us. If its shadow is loud and proud, a long nap until spring awaits the docket.

Unlike the groundhog, I haven’t relied on my shadow to proselytize the reality of my being and all that I am capable of. When I see my shadow against sunlight, it accentuates the machinery I use as a means of mobility. 

My shadow has never revealed all that I embody. It might show you how my wheelchair moves, but it discounts the flow of my spirit. My shadow makes bold claims, but only tells half-truths. 

My shadow is so preoccupied trying to define my margins that it underestimates my moxie. In the currency of reciprocity between my heart and connection with the world, my shadow is a repeat offender of shortchanging me.

I once felt the need to overcome my shadow. Another momentous occasion shares the day of the groundhog’s annual fortune-telling jamboree — it is something that escaped my knowledge until a framed print was given to me as a birthday gift by my partner, Andy, when I started writing this column. 

On Feb. 2, 1897, the blueprint for W. J. Barron’s “Type Writing Machine” was patented.

It is through my writing that I’ve been able to explore both shadow and illumination, to tell stories that paint more than the mere silhouette of a wheelchair. In crafting these sentences, I crack open the facade of my SMA. 

I pore over my words to capture and embrace the light within me. Like the enchanted subterranean world of that groundhog I once met, I do a deep dive through the earthen crust of my soul.

I resurface with upturned palms, bearing words of hope, love, and a passionate forecast of inclusion.


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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