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 the routine of our daily…
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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…
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 the line, lady.” A perfectly…
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 about being in labor with…
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 therapy Evrysdi (risdiplam). It…
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 night when the startling sound…
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 is commissioned to align the…
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 in this way, I’m wholly…
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 a mask in sight; not…
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 touchstone of celebration in its…
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 were filmed in grayscale. Winds…
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 out a pumpkin spice recipe,…
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. We sat together at a…
