In case you’re wondering, the miraculous acne medication, Accutane (isotretinoin), is as fun as it sounds. Accutane is a six-month program, which means I have three months left. The medication is definitely…
The Wolf Finally Frees Itself
— Brianna Albers
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 writing “Death and the Blade,” a romance-forward adult fantasy novel with #OwnVoices disability representation. Find her online at briehalbers.com and on social media @briehalbers.
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When it comes to sleep studies, I mainly remember orange juice. Don’t ask me why. I was young then, around 8 or 9, so I have to assume the technicians were trying to bribe me or something. My last study was in 2002, so I was a little nervous when…
I was the kid with 50 different diaries. Usually pink with sparkles. Bonus points if they came with their own bejeweled pen, because what 9-year-old girl doesn’t like rhinestones? The issue is that I never used them. People would buy me diaries…
I wasn’t sure what to expect from this year’s Cure SMA Conference. I’d attended only once before, but I was too young to care about anything except for the service dog that I met and for which I subsequently longed. I knew there’d be…
Between the wheelchair, the pristine white Keds, and the pink baseball hat, I stand out. But I can’t say that I’m used to strangers stopping me in the middle of a reception hall so they can compliment my writing. “So you’re the famous columnist!” Am I?…
“You don’t have to feel guilty,” my therapist told me. “Just try to enjoy yourself. You won’t make the trip better for anyone by feeling guilty.” I made the mistake of telling my dad about this exchange, so whenever anything remotely inconvenient occurs, he says, “You…
If you’ve been keeping up with my column, you’ll know that my parents and I are essentially living in a no-fly zone (only our closest friends are allowed to visit because the house is a mess and also probably a health hazard). There…
Before I knew what illness anxiety was, I made excuses for my ever-present fear of death by the common cold. “I was supposed to die at 9 years of age,” I tell people, watching their faces screw up with realization. “I shouldn’t be…
When I first met Elena, my patient care assistant’s daughter, she was almost 2, with chubby cheeks and golden ringlets of hair. She was shy — painfully so. It took her months to warm up to me, and even then she…
Everyone and their mother is talking about Zolgensma (AVXS-101). Just like what happened with the release of Spinraza (nusinersen), people everywhere are sharing links to news stories on the groundbreaking new medication. I feel more or less the same as I did in 2016 when…
It’s been, as they say, a day. My parents bought an airplane hangar and are transferring it to our vacation home in Wisconsin. My dad wants to turn it into a work shed, whereas my mom envisions it as an antique store…
I write a lot about brokenness. I always have. It’s one of the themes of my work, not only as a writer — but also as a (future) mental health professional. Looking back, I’m sure it has a lot to do with my childhood, and the…
I’ve always been a night owl. It’s a running joke in our family: My dad and I stay up until 11 p.m. or midnight, while my mom has a strict schedule comprising 8:30 p.m. bedtimes. She gets far too much enjoyment out of our morning grumpiness. If she’s…
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