The Recent Rare Disease Panel Made My Year
Like most things when it comes to Sherry, it was a no-brainer. A few weeks ago, I woke to a string of messages in our shared Discord server. An SMA News Today columnist,…
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.
Featured Post
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…
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I’m Starting to Weather the Midwinter Bleakness
Every 28 days or so, I convince myself that I’m dying. If you’ve read my column before, you’ll know that I have a complicated relationship with death, which is to say I see it…
Cat vs. Allergies: A Devil’s Bargain
I never think about my life after 7 p.m. Years ago, I stumbled across this particularly helpful life tip. As someone with anxiety, I have a hard time shutting up my brain, especially…
A Year Later, I’m Still Wearing Old Shoes
Last January, I wrote about shoes. At the time, I was gearing up to get a new wheelchair. Those who are familiar with wheelchairs will recognize this process for what it is: absolute…
The Enemy Is Urgency
In 2019, something wonderful happened. I got bit by the tattoo bug. If you’ve followed my column for a while, you’ll know my first tattoo was a big deal. First, it was…
Even in the Midst of COVID-19, We Must Own Our Time
As I write this, my room glows in the midafternoon sun. Sometime last year, I invested in a suncatcher, so there are rainbows everywhere — pastel sunbursts that are there, then gone. It’s unseasonably…
Having a Body Is a Full-time Job
“One thing’s for sure,” I tell my dad. “This is going to make a great column.” I’d been dreading this doctor’s appointment for days, and not just because of the hell that is commuting…
My Year of Liberation
When it comes to rituals, I am religious. Weekly rituals are the shortest, and consist largely of short-term planning. Monthly and quarterly rituals, on the other hand, are more reflective. Instead of updating…
To Protect My Emotional Wellness, I’m Letting Myself Take a Break
Every Wednesday, I jump on a Zoom call with a bunch of writers and talk. Sometimes we talk about professional things, like revisions, copy edits, or writing to the market. Sometimes we talk about…
We’re Still in a Pandemic
In terms of “things I was expecting,” my mom coming down with COVID-19 was not one of them. The Albers family is notorious for doing too much at once. One of my caregivers often…
Reflecting on 2 Years of SMA My Way
It’s strange to think that a little over two years ago, I witnessed — and participated in — the conception of SMA My Way, a patient-focused community sponsored by the biotech company Genentech…
Where Everybody Knows Your Name
My local clinic isn’t actually local. Boasting neighbors like IKEA and the Midwest tourist trap that is the Mall of America, my clinic is a 20-minute drive — one way. I could take…
