An Aquarian With SMA Packs for the New Year

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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

When each human is born, a map of ethereal territories is drawn up in a distinct way. 

For every passing minute and hour within a calendar date, an interior designer of celestial proportions is commissioned to align the stars, planets, and moon in a timeless fashion. Like the swinging pendulum cues the chimes of a grandfather clock, it is said the mood of the universe during our unparalleled entrance into the world echoes throughout the personalities we display. 

I was born under the astrological sign Aquarius. The degree to which I embody most of the classic Aquarian traits strikes me as uncanny. I’ve been pondering how such traits are intertwined with my ability to cope with SMA, and how they influence times of change.

An Aquarian relishes independence. This cornerstone of the water-bearer sign is a difficult aspect of my personality to grapple with in relation to my SMA. I like elbow room. I feel balanced when I have the opportunity to ruminate in my own energy and spend quality time with myself. But SMA always hangs around, too (sort of like that one party guest who lingers way beyond their welcome, until the guacamole resembles troll droppings and a few ice chips drift in an ocean of cooler water). 

I count on caregivers to help me accomplish the most intimate personal tasks of daily living. Sometimes, it’s downright hard for me to deal when breathing room is in short supply. Sometimes, I’m not graceful about it. I rely on others to balance my grit with grace, and my grace with grit (whichever the situation calls for).

For instance, my partner, Andy, is sensitive to the frequency I emit on any given day. He hones in on emotions that travel outward from the metropolis of my heart. Even if my emotions tiptoe around in the middle of the night to avoid disturbing everyone else’s rest, he gently grabs their elbow, puts a teakettle on the stove, and invites them to stay awhile. Relying on loved ones as pillars to steady our wobble is a vital facet of the human condition. 

An Aquarian is a humanitarian who dreams of changing the world by believing in the people, fostering empathy, and endorsing compassion. Advocating for others with disabilities has become second nature to me. Swimming in the undertow of SMA through so many tides has given me the plucky momentum needed to chart my course for betterment of the community. While I don’t consider myself a leader, I strive to hold a torch that casts scattered light upon the people near me. Changing the entire world seems daunting, but I can impart benevolence on my small corner of it.

An Aquarian loathes conventionality and sees beauty in spirited eccentricities. Rebels at heart, Aquarians value revolutionary thinking. I cherish people who embrace my oddities and quirks. My relationships are strongest when I’m given free rein to uplift my friends, acting as an apothecary to invigorate their sense of self.

Aquarius overthinks situations, dreams in big ways, and welcomes change. The dawn of the new year lies around the next bend. Trailblazing into uncharted neighborhoods and fresh endeavors requires me to pack some of my heaviest personal effects into bags and check them at the door. 

I have a history of consulting others and asking for permission to do what I feel drawn toward in life. Because of my SMA, I’ve lost physical functionality over time. I feel these things as a waterfall along my fingertips — I cannot grasp them and they were never mine for very long. At times, these creeping vines of vulnerability and self-doubt wind tightly around my feathered ambitions. I begin to wonder if my dreams are beyond my reach in the face of SMA, and for a moment, I lose sight of celebrating everything I’ve overcome and accomplished so far.

As of late, I’m working on abandoning empty validations. More willingly, I send them away on a backpacking trip for the day. Instead, I’m focusing on validation of the fruitful kind — the orchard of empowerment growing within myself. 

I’ve often overheard the evanescent conversations between my heart and the universe. Too soft a whisper, I’d lean in to hear more clearly but never deciphered what I needed to. In bright alignment with soul-full choices, I’m creating an environment in which those whispers can be elevated to emphatic chimes. In a quieter place, I can discern the key notes of my heart’s intricate language.

In the new year, I hope to harness the independence, innovation, and vigorous healing I yearn for as an Aquarian, and as a human who owes it to herself to trust in the bigger plan for the highest good. 

I hope to rejoice in all that is possible during another trip among the sun, moon, and stars.

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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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