Why I hate (part of) the 21st Century Cures Act
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…
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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How an airway collapse brought … relief?
Author’s note: I wrote most of this column on my phone while getting an atypical mole removed. If you wondered why I disappeared from social media, it’s because I’ve been busy crossing things off…
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Adding a nasal irrigator to my list of rare disease gadgets
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…
I’m hydrating this new year thanks to an external catheter system
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…
I’d like to say good riddance to 2024, but instead I’ll focus on gratitude
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…
How my new BedJet device helps me avoid sweating at night
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…
What do you do when video game accessibility is inaccessible?
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…
I just bought and used my first all-terrain wheelchair
“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…
How the pandemic changed online school for the better
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…
Weighing the pros and cons of disclosing my disability online
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,…
This SMA Awareness Month, I’m finding different ways to advocate
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…
How a complex care program is revolutionizing my healthcare
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…
