Moving My Body of Solitude and Connecting With the World Around Me

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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’ve been on my own more than usual lately. 

The idea feels odd to me when I first greet it, but when I consider the depths of the hourglass accounting for all of my life’s moments so far, I visualize solitude as a dear old friend. Like any classic Aquarius, I recognize the smile lines of a friend’s face all too well.

When I was younger, I often rolled along the bustling street that zipped up the middle of my tiny Midwestern hometown. The route served as a main artery in the brain-to-heart connection of the town, traversing a direct line between the humming school district and the cricket-chirping business district. The street was crowded with quaint homes, mature trees, and small plots of front lawn greenery. Unlike outlying roads, it was a howl of camaraderie. 

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Summer months hosted a maze of garage sale routes with a quiver of arrows directing prospectors this way and that. It was the kind of real estate sought out by ants who built their sand castles between uneven gaps of pitted concrete sidewalks, anticipating a never-ending food supply of sweet drippings from popsicles that surrendered to sweltering afternoons, or confectionary debris thrown in jubilation from drifting parade floats.

I maneuvered the circuit well. I reveled in the solitude and independence of it all. If I were to find myself in any sort of trouble, I knew there were enough people passing by to take notice and lend a helping hand, which was assurance enough for me.

Hitting the trails

If you’re an avid reader of my columns, you’re aware of my enthusiasm for accessible hiking and inclusive outdoor adventures. During the final dawn song of Wisconsin’s pleasant months, I’ve been pushing myself to hit the trails and soak up any remaining slivers of golden goodness. And I’ve been doing it by myself.

As much as I enjoy community and friendship, I thrive in peaceful moments of quality alone time. Especially during this strenuous era of my life, I need to stay cognizant of moving my body through various forms of self-care. Moving my wheelchair is an extension of my body, and my favorite way to set my mental health in positive motion is through hiking. 

At times, I’ve noticed both disabled and nondisabled people refer to hiking in quotes, such as, “Today, I went ‘hiking’ in my wheelchair,” or, “Wow, it’s so cool that you get out ‘hiking’ despite your disability!”

For what it’s worth, I’ll never put my outdoor experiences in quotes like they’re insignificant or fraudulent. I utilize trails that are inclusive to everyone. Regardless of how my fellow trail mates travel along the same path — whether it be a fast jog with a heart rate monitor, a slow jog with a bear claw, biking, a person walking their dog, a dog walking their person, a power wheelchair, a manual wheelchair, a skateboard, rollerblades, or a pogo stick — we’re all moving our bodies to the best of our abilities, and the health of our mind is benefitting from it tenfold.

But I do encounter some unique circumstances compared to other trail users. If I drop my phone, get stuck in a mud puddle, or face a wheelchair malfunction, I wouldn’t easily be able to MacGyver the situation on my own. Therefore, I must consider safety before I venture out.

I’ve recently started using AirPods while I’m on the trails. I keep my cellphone close to my body, which allows me to send a text message with voice command. This affords me significant comfort in having a lifeline to the world beyond the forest.

Additionally, I ensure that at least one friend or caregiver is aware of my whereabouts when I’m hiking by myself. This usually is a given since I rely on caregivers to drop me off at the trailhead. In order to be independent, I depend on people to help me. 

A reconfiguration

As I navigate through a grueling season, I rely on acknowledgement of all I’ve accomplished up to this point. I remain committed to learning more about myself each day. Somewhere within the blend of community and solitude, busy towns and desolate hikes, I evolve.

I grow, shape-shift, and outgrow. 

Sometimes in the quiet moments, it’s painful to be revered as resilient because we wish we wouldn’t have had to travel the torrid path that brought us to this point of strength in the first place. 

Yet the colorful threads of my life are dancing and rearranging in novel ways. Loose ends are swaying in the crisp autumn breeze. Knots are being tied with nimble fingertips in areas never explored before. My unmet needs, desires, and wants are being underscored in bold ways, and I’m rising to the occasion of understanding all of the magic my body harbors within. 


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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