A Rare Disease Traveler Finds Her Village
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…
A Wildflower in the Wheelderness — Katie Napiwocki
Katie is a Wisconsin girl at heart who strives to paint with her words, illustrating a soulful connection with nature and inclusive outdoor adventure. She was diagnosed with SMA (type 2) during toddlerhood. With a background in Human Development & Family Studies, she finds fulfillment in encouraging others to embrace their distinctive beauty. When she’s not engaging in advocacy, you’ll likely find her hiking an accessible trail, adoring a sunset, or eating a s’more somewhere beside the three brightest rays of sunlight in her life — her partner, Nick, and his two awesome kiddos. Follow her story on Instagram @wheelprintsalongthewildflowers.
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Keep an open mind, and 3 other tips for working with caregivers
As SMAers, we’ve probably all been there. We work tirelessly to build a caregiving team. We train, explain, and expose the inner workings of our dignity. We allow new hands and energy into…
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Thriving in the Winter Pines: Mother Nature, Will You Be My Valentine?
I could tell you this year has been difficult for me, and I’m certain you’d reply with a swift hitchhiker’s thumb and a comment to the effect of, “Yeah? Welcome to reality. Back of…
A Groundhog With SMA and a Writing Machine Considers Her Shadow
I’m a groundhog. Well, symbolically, I’m a groundhog. I emerged from my burrow on Groundhog Day, 1986. I’m reminded of this each year my birthday rolls around, when my mom recollects her story…
Being My Own Health Advocate Kindles Multidimensional Healing
When I say, “I don’t need my SMA to be fixed,” I mean it from the bottom of my heart. Last month, I set sail with my first dose of the new disease-modifying…
A Vixen Scream: Navigating Sex and SMA
It cried out in the dead of night. The wild call erupted like the sensual panic of a volcano beneath placid moonlight. My partner, Andy, was helping me get situated in bed for the…
An Aquarian With SMA Packs for the New Year
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…
Finding My Voice Within the Disability Community
I don’t prefer the phrase “disabled person.” It isn’t a go-to accessory item regularly pulled from my colorful closet of self-descriptors. Before we go any further, let me assure you: If you describe yourself…
A Sigh of Gratitude After November’s Golden Yawn
They congregated on a beach in the mild November air. More than 50 of them stood there, wondering if they dare dip their feet into the water or remain lounging on soft sand. Not…
Some Trails Are Buddy Trails
Today is thought to be my sweet beagle’s 11th birthday. Even if it’s not her actual birthday, it’s still her unbirthday — and to any fan of imaginative literature, an unbirthday is a worthy…
Spinning Webs of Resilience
I’ve been grieving this month. On some days, the weather was impeccable. Morning dew twinkled on silk linens of freshly spun spiderwebs. The air smelled of sun-crisped leaves dipped in salted caramel. Other days…
The Crackling Intimacy of an Autumn Campfire
Come, sit beside me at my campfire. How about some apple cider or hot cocoa on this crisp autumn night? It’ll warm your bones. Help yourself to a s’more. I haven’t yet figured…
A Narwhal Pierces Through Azure Ceilings
On my writing desk sits a narwhal. Not an actual narwhal from arctic waters. That would be absurd. It’s a stout piece of pottery I painted alongside my niece last winter.
