Living on My Own: Reinvention and Self-love With SMA

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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

For the first time as an adult, I’ve met the stranger within myself. 

I’ve been exploring the unknown caverns winding deep inside my heart, not from an underground entrance, but instead, closer to the clouds than I’ve been in a long while. My environment and scenery look entirely new compared with the months and years leading up to this point.

I’ve finally made the move I alluded to in previous columns, and I’m now living on my own. I’ve taken a leap and funneled copious amounts of hope into the free fall. 

Where once resided a homeland of countryside, abundant wildlife and tranquillity, my new vantage point rests atop the tallest floor of a downtown apartment building. With endless sky above me, a quaint historic city before me, and bustling college students scurrying on the sidewalks below, I’ve been nesting in a beautiful but unfamiliar dwelling.

Not only are my structural surroundings altered, but my physical caregiving interactions are novel, as well. I’ve found myself buried in a full-time task of running my care team. I’m coordinating my schedule with seven other individuals, interviewing candidates, assuming human resources responsibilities, training new eyes to anticipate my care needs, and acclimating to many new hands touching my body and learning my routine. 

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With all that constant communication on a daily basis, it’s no wonder my voice has needed a rest lately. The typewriters within me have been out of commission, in a gestational state. To honor my body, I’ve been allowing the pages to remain a blank, untouched space of solitude and healing.

But my authentic disabled self can’t rest for too long without drawing closer to the majestic vibration of advocacy and continuing to tell my story. (I assure you, it’s getting good and juicy these days!) 

In my moments of rest from chaos, I watch the sunsets fade over the city skyline. Tucked a few blocks from the windows of my river loft, a late 1800s theater sits under renovation. After closing the year I was born, the theater has sat vacant and complacent for 36 years. The once elegant brick building is a stoic icon of the city — everyone in the community knows and appreciates the beguiling golden days in which it stood tall and pristine, but only recently has anyone bothered to ask what it could be restored and transformed into.

If the theater had a persona, I’d imagine she is afraid of changing and also terrified of staying the same. I marvel at her incremental progression of restoration. Broken windows mended with new glass. Radiant illumination flowing from reconnected electricity. A renewed safe space created by machinery and sweat from human hands. 

As I’ve looked in the mirror recently, I’ve started to see myself for what I can be — not in spite of these monumental life shifts I’m navigating, but because of them. And not in spite of my spinal muscular atrophy (SMA), but because it helps me to see the most beautiful parts of myself and continue to build while holding reverence for my roots.

To know what I’m building myself into, I must know and understand all of the pieces I’m working with, both old and new.

Life is really hard. We sometimes find ourselves in situations we never anticipated we’d endure or greet. The scenery around us was not what we envisioned when we peeked into the crystal ball within our own altruistic mind. Living with SMA doesn’t make us immune to the many hardships that have absolutely nothing to do with SMA. 

Long-standing relationships end. People change. Opportunities develop and dwindle. Buildings arise out of the earth. Storms move in, branches bend, and rain nourishes. The sun rises and sets. Death and rebirth carry on in cyclical fashion. 

We’re each our own worst enemy, constructing barriers in our minds because we feel afraid of the outcome and the unknown. We fear judgment from others. Yet none of that matters as long as we remain true to ourselves. We must have quiet conversations with our heart and listen to the hum of the universe. Self-love is often clouded by self-doubt.

SMA has helped me grow into a resilient soul, even though growing pains are excruciating. In many ways, I’m suited for the height of my river loft looking out at the shapeshifting clouds in a sky of possibilities. Up here, I have space to dream and freedom to love with a whole heart.

As I reinvent, I realize a girl is always her own true love. It’s taken me awhile to discover it, but I’m here for myself. I’m showing up every day, allowing beauty to bloom through the humble tasks of independent living that define how I thrive. 

In the midst of tall buildings and nature trails alike, I remain a wildflower. 

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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