Through Chaos and Calm, I Voyage Onward

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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

It was a classic Midwestern summer day on Lake Michigan as my friend Sarah and I parked by the Wisconsin docks of the Sailing Education Association of Sheboygan. 

As we geared up for an afternoon of adaptive sailing, the breeze blew stronger, carrying the metallic rasp of congregating seagulls throughout the harbor like easy-listening elevator tunes.

A moment before Sarah began fitting the dockside transfer lift underneath my hips and thighs, I turned to my sailing instructor and asked if it was too windy to go out on the water. She assured me it would be all right, so long as I was willing to do my share of rocking and rolling. A well-seasoned Foo Fighters fan, I was up for an adventure framed by the edges of solid drum beats and the deep bodies of thunderous guitar riffs.

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I transferred into the supportive seat of the sailboat and settled in. Because of my diminished trunk control, I opted for the chest strap. When I’m sitting with optimal support, my body becomes less fatigued, and the capacity of my mental space makes ample room for joy.

As we departed from the docks and allowed the hands of the wind to pace our vessel through the harbor, I anticipated choppy waters. Having only sailed in prime conditions before, I didn’t know how it would feel, how I’d fare, or how I might come out the other side of this day. If nothing else, I’d discover just how prevalent my propensity for motion sickness is.

Our boat traveled toward the fringe of the harbor, where two causeways of earth and boulder nearly touched fingertips, like the outstretched arms of a child embracing a battalion of toy ships in the porcelain waters of an evening bath-time routine. 

I looked beyond the harbor, where the teal hue of water abruptly shifted to navy blue. The waves undulated toward us in rhythmic swells, and the clouds were gray above me. From a seagull’s perspective, our creamy sails drifted aimlessly in a roiling pot. With my body in the foreground of this lackluster palette, I began to vividly see the blooming colors within myself.

I sat tall and upright, heading toward the wilderness of Lake Michigan. Waves crashed toward our boat, drenching our faces and hair in chilled freshwater beads. My sailing instructor shouted commands from behind me and I followed, manipulating the sails with the buttons of adaptive hand controls. 

I felt the vibration of water and air, the tug between chaos and calm. Each has their place. Seldom has my life unraveled in a smooth or calm manner. I’ve needed to actively search for peace and harness it somehow, even when it appears to be far away like the ghostly moon brushed into the open canvas of high-noon sky.

The punch bowl of my blood ran sweet and spiked with adrenaline. I felt a sense of hope ignited in my veins — one I hadn’t realized was missing lately. 

Recently, the changes in my life have been compounding in towering piles. I’m building a caregiving team, moving into my own apartment, and wondering if my body and spirit will be able to carry me through all that I’ve yet to experience. I writhe in my anxieties like a worm on a hook, and I wear it in the most unflattering way at times, handling stress as poorly and unsteady as these intrepid crests that rock my boat.

But in the motion of the water, I saw the moving parts of my life. I saw the balance of rise and fall. When I feel bigger than the obstacles outside of me and around me, I channel greater courage within. I’m called upon to be cunning, creative, resourceful, and resilient. In seasons of immense chaos, both the best and worst is triggered within me, and I chart my course through fortitude and perseverance. 

As this new era of my life is written, I’ll need to wholly dedicate myself to all that I can manifest and bring into the light. I recognize how help from others is a constant pillar of independence in the structure of my caregiving needs, and I’m worthy of help. This sacred journey of my life is for me to experience in a way that fulfills me. I allow my hardships to swell my spirit into that of a visionary while feeling human and humbled in my struggle.

Returning home, I was grateful for a day I desperately needed.

We all have days like that — days that jiggle our compass and reset our navigation when it feels like we’re moving void of course.

If we dare ourselves to keep dreaming, dive into new spheres of our inner self, and meet what we are made of, then at any time in our life we’re just getting started.


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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