Brianna Albers (she/her) is a crip-cyborg storyteller living in Minneapolis-St. Paul. She was diagnosed with spinal muscular atrophy type 2 in 1996 and lives with co-occurring physical and mental health conditions. By day she works as an advocate, bridging disability and mental health awareness to empower people to live their best lives; by night, she dabbles in imagination, and is currently revising “The Saint and the Spider,” an adult space fantasy with #OwnVoices disability representation. Find her online at briannahopealbers.com and on social media @briehalbers.
Note: This column describes the author’s own experiences with Evrysdi. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I was expecting my insurance to turn up their nose at…
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Three years into my collaboration with biotech company Genentech, and I still feel like a fish out of water. This is what professionals call impostor syndrome (IS), defined by Lexico as “the persistent inability to believe that…
I could tell you about Old Santa Fe, New Mexico. Cobblestone streets, framed by blooms of green. The town jail turned bookstore — a refuge from the heat, and a haven for my mom and me. St. Francis’ cathedral,…
For the first time in three years, I’m on the road again. By the time you read this, I’ll be a day out from Anaheim, California. This isn’t the first time my parents and I have made this trip…
My parents’ dreams revolve around the middle of nowhere. You probably think I’m joking. But the fact remains that I’m writing this column from a tiny town in Wisconsin with a population in the 800s. They’ve been nurturing this…
No matter how hard I try, there are things I continually forget. Take, for example, the few times I’ve hosted parties. I’m an introvert through and through, so hosting isn’t exactly my forte, but I love spending time with…
In my mind, Luke Skywalker was in love with me. For context: I was never much of a Lego girl. But I was a “Star Wars” girl. It stood to reason, then, that the Lego Star Wars games…
When it comes to healthcare, I’ve had remarkably good luck. There are, of course, bad apples. See, for example, the gastroenterologist who rambled about “The Odyssey” as he punctured my stomach lining. Or the surgeon who, in my…
There’s nothing quite as satisfying as checking an item off your bucket list. Earlier this year, I put on my big girl pants and rescheduled a long-awaited tattoo appointment. It was a whole ordeal — one you’ll remember if…
A year after I started fine-tuning the seating of my new wheelchair, I found myself back where it all started. I wrote a few weeks ago about my continuing struggles with the chair. Since then, one of three…
My first Evrysdi-versary passed without incident. Ironic, considering how much time and effort I put into acquiring the medication. A disease-modifying treatment (DMT) for SMA is no small thing. Spinraza (nusinersen) took the community by storm, with patients around…
Last Sunday, my dad took me by surprise. “I don’t have anything planned for today,” he said as he helped me get out of bed. “Let’s do something fun.” I assumed he meant something simple, like getting ice cream…
When it comes to new wheelchairs, I’ve been known to drag my feet. My parents love to tell the story of how my last chair sat in our basement library for a year after I got it. In my…
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