Having SMA Means Watching Your Weight, but for Other Reasons
“I hate to say it,” my dad said, “but you’re getting a little heavy.” A miracle, really, when you consider my base weight of 50 pounds. I was a baby…
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
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…
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Productivity and Survival Are 2 Sides of the Trauma Response Coin
I keep hearing about “making the most of quarantine.” Learn a new skill! Finish that book you’ve been reading for months! Plant a garden! The possibilities are endless. The…
We Can Make Something Good of This Pandemic
I cried, really cried, for the first time last week. My mom is working from home (WFH) and has transformed our basement into a makeshift office.
The Stories I Share Make Me Rare
I’ve been thinking about Rare Disease Day on Feb. 29 for weeks. I’ve been trying to figure out how exactly I’m rare, and in what ways, and…
My Caregivers Are My Second Family
I feel like it’s been forever since I last wrote one of these things. It may be because between the holidays, the start of a new month, year, and decade, and school…
I Am the One I’ve Been Waiting for
Like a decent percentage of the global population, I have part of the “Frozen II” soundtrack stuck in my head. The movie is about the unknown. Self-acceptance. Stepping into your power.
My Nighttime Anxiety Leads to Scary Imaginary Scenarios
I have this nagging feeling that I’m going to die in bed. My parents sleep in the basement, so when I need to be rolled at night, I scream at…
The Interactions That Stay with Me
A few weeks ago, my mom and I went to Junk Bonanza, a vintage market that’s held twice a year at the local horse racing…
Happiness Never Looks Like You Think It Will
As a kid, I assumed that happiness would be accompanied by a kiss in the rain, like the iconic scene between Hilary Duff and Chad…
Advocating for Myself on My Accutane Journey
In case you’re wondering, the miraculous acne medication, Accutane (isotretinoin), is as fun as it sounds.
The Wolf Finally Frees Up Its Schedule
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…
Learning the Importance of the SMA Community
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…
