A Rare Disease Traveler Finds Her Village

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by Katie Napiwocki |

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I was once a rare traveler wandering the countryside.

On my shoulders, I carried a basket of artifacts and relics. Each piece correlated to moments in my life when I’ve felt something within my heart — things both small or grand, benevolent or wicked — falling deep and deliberate like stones into a well.

Elaborate cuckoo clocks echoed my fear of time and progression of my SMA. Modest treasure chests cradled gratitude for the petite, everyday tasks I could still physically accomplish. A ship in a bottle displayed my love of adaptive sailing. 

There were lanterns, lamps, swinging pull lights, and switches — each for a time I’ve tried to uplift a friend. Entire stoplights stood tall, looming as blinking blunders of hesitation and self-doubt. Ceramic narwhals illustrated all the times I’ve bobbed in a sea of alienation. Birdhouses donned in front-porch nests represented attempts at spreading my wings of independence — followed by broken model airplanes and hot air balloons, marking failures or successes thereafter.

My mission was to find a fit home for each piece; somewhere I could place it in quiet acceptance, knowing it served a purpose in shaping my story.

Placing one relic, I’d watch another emerge. At times, they’d accumulate more quickly than I could fumble to make space. 

My path grew longer. I crossed meadows of tall grass, cattails, and wild blooms. I crossed swamplands with gnarled trees reaching from murky shadows. I crossed bridges, valleys, and riverwalks.

When I’d circle back to my roots, people from my village would see me and say, “Hey, can I give you a hand with that?”

I’d briskly reply with a smile, “No, no. I’m good!”

I wasn’t good. This basket was growing heavy. It was hard on my shoulders, but it was mine to carry. Once in a while, strangers would stare like sacks of potatoes with overgrown eyes. In a flush of embarrassment, I’d press onward.

I had a clever solution, though. “What I need,” I thought, “is a larger vessel. A wagon! Yes, that will do.” 

I emptied my basket of relics into an abandoned wagon and pulled it behind me. Only, the pieces compounded more quickly now. I’d been so focused on finding a solution for how to carry all this weight, all this stuff, that I’d forgotten the initial task at hand: Move throughout the landscape and find a home for each piece. 

Shoulder to wheel, I heaved the monstrosity with all my might, still smiling and nodding to passersby. I tried to take the path of least resistance, but every bump, every pebble, was a mountain. 

Suddenly, a wheel broke. In great upheaval, my wagon crashed. I stared at it in disbelief and wondered, “What the hell am I gonna do now?”

My village wasn’t far. When you’re a small girl with a giant wagon of stuff piled high to the clouds, word moves fast. 

A gathering of trusted friends took notice, offering tokens of advice: “How about each of us takes a handful of these relics? We’ll help you find their place. Even better, we can set up a shop in the market square. That way, when you can’t journey along the countryside, you can trade your artifacts there. Make new connections! And we’ll be a stone’s throw away whenever you need us.” 

In those days, my heart was on the run. I didn’t know how to be its merchant, negotiating the dealings of my SMA and the life I sought for myself. I needed people to guide me through difficult times and challenging tasks. But I didn’t want to ask for help. I didn’t know how to. I often assumed people didn’t care, didn’t want to help, or couldn’t possibly fathom what I was feeling.

Asking for help isn’t a rare thing. It’s an extraordinarily ordinary thing! But living with a rare disease shapes the nature of our needs; it revolutionizes the myriad ways in which we ask, give, and receive. These interactions, no matter how loud or quiet, lend priceless opportunities for others to learn meaningful perspectives about a pocket of life they might otherwise never be exposed to.

Even if our people — our village — can’t relate to living with a rare disease, they might offer some noteworthy advice. We never know what sort of wisdom or inspiration we’ll unearth by opening up to others instead of pouring copious amounts of energy into crafting illusions, masks, curtains, and wagons.

We need people. We need them to rub knots out of our tired muscles. We need them to help us stretch our limbs when the day has carried on far too long. We need them to give us a breath when we’re running short on air.

I will always be a rare traveler. I’m proud of it. My village is proud of it, too.

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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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