Even with SMA, my checkups have, for the most part, become pretty routine. Every six months, I drive 30 minutes to my nearest specialty clinic. While there, I see various doctors, each with their own unique vibe. My neurologist catches me up on all the books he’s read recently.
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 “An Angel in the Garden,” an adult space fantasy with #OwnVoices disability representation. Find her online at briannahopealbers.com and on social media @briehalbers.
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On a perfectly mundane February afternoon, my mom and I drove to downtown St. Paul, Minnesota. It’s a new ritual now that I’ve transitioned most of my care to Gillette Children’s Specialty Healthcare. Every six months or so, I spend the afternoon at their adult clinic, where I am…
It was another appointment in an appointment-packed January. My hopes weren’t particularly high, but no one will ever accuse me of being a less-than-perfect patient, so I braved the cold bite of the new year. I was seeing an ear, nose, and throat (ENT) specialist based out of…
Let me explain something called “pee math.” I was familiar with the concept, but didn’t realize it was a common experience in the SMA community until a colleague brought it up. It goes like this: When boarding a flight, you calculate how much liquid you can drink before…
Four must be my unlucky number, because the worst years of my life have all ended in four: 2014, the year of major depression, and 2024, the year of suck. (I’m sure 2004 was bad, too, given that I’d just undergone a spinal fusion the year before. Thankfully, I don’t…
If you have SMA or care for someone with the disease, you’ll know what I mean when I say we get sweaty. At first I thought it was just me, but then I read somewhere online that folks like me have sweaty palms. This moment was one of those…
It’s 2014. I’m months-deep into a major depressive episode. Nothing is enjoyable, not even my all-time favorite video game. I feel listless in the worst of ways. Several of my friends are playing “Dragon Age: Inquisition” (DAI), the latest installment in the long-running video game franchise by developer BioWare.
“Watch out for that Heidi Brown,” my dad likes to say. “She’ll keep you on your toes.” It’s true. If there’s one thing my mom excels at (and there are many), it’s coming up with the most exquisite of curveballs. See our last-minute trip to Pensacola, Florida, last December…
I’m about to date myself, but hang with me for a sec. Back in my day (which wasn’t really that long ago; I’m not that old), online school was unthinkable. Perpetually online folks like me were seeing the writing on the wall and begging people in power to embrace the…
The thing about visible disabilities is that you can’t really hide them. You can try, but there’s only so much you can do when it comes to a big honking wheelchair. The internet, however, is a completely different story. There’s a freedom to it, a flexibility, that you can’t get…
If you’d asked me a year ago what my plans were for SMA Awareness Month, I would’ve come back with a laundry list of items, from Instagram Reels to the Minnesota Walk-n-Roll event put on by Cure SMA. This year looks a little different. Part of it is…
I was supposed to be preparing for an upcoming work trip to Austin, Texas. Instead, I was sitting in a hospital room, waiting for the doctor on call to look at the area around my gastrostomy tube (G-tube). I’d spent the past several months in a nebulous state of health.
When I graduated with a master’s degree in 2020, people kept asking me if I’d ever go back to school. I looked them in the eye and with all seriousness said, “Over my dead body.” Well, color me pallid, because it turns out I was wrong. It was my mom’s…
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