A look back at 2023, a year of contraction
On a Sunday morning in mid-November, I opened my email to a newsletter from one of my favorite writers, Catherine Andrews. In it, she named the past 15 years of her life as…
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
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…
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‘A tricky stick’: The challenges of getting blood drawn with SMA
The clock ticked accusingly on the wall. A lab technician had been inspecting my arm for the better part of 10 minutes, all in search of a vein that would put out a nominal…
The changing seasons trick me into thinking my disease has progressed
Some people live for cold weather. They hate the heat, for some strange, inexplicable reason, and live for the day when they can pull out their chunky knit sweaters and thick, fuzzy socks. I…
Adults with SMA need and deserve better support systems
Every person with SMA deserves to have comprehensive care and to know they'll be taken care of, no matter what happens, from birth to death, says patient advocate Brianna Albers.
I owe my life to an incredible support team growing up
First in a series. “What was your support system like growing up?” I was on the phone with a researcher from Augustana University in South Dakota. We were discussing my transition from pediatric to…
Why medical professionals need to familiarize themselves with SMA
Growing up, my pediatrician was more than a doctor; she was part of the family. She supported me through all of life’s transitions, from puberty and menstruation to my transition to adult care when…
One year later, a mysterious mouth injury strikes again
I’d just survived a car accident in Phoenix while road tripping with my parents from our home in Minnesota to the 2022 Cure SMA conference in Anaheim, California. (Long story short, my…
Embracing my wolf chronotype helps me forgive my body
In another world, I am my mother’s daughter, waking with the sunrise and heading to bed no later than 9 p.m. But in reality, I take after my father, who sees early risers as…
How an interruption in SMA treatment affected my quality of life
Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. On our way home…
Seeing my younger self in the new blockbuster ‘Barbie’ movie
I didn’t even know about the “Barbie” movie until I saw people talking about it on social media. I watched the trailer and thought, “That looks like a funky little movie.” But…
‘A Whole New World’: Celebrating the SMA community at EPCOT
The older I get, the more easily I cry. It never used to be that way. I didn’t cry at movies. I definitely didn’t cry when I was happy. Crying was terrible, and I…
Regular exercise is helping me prepare for a trip to Florida
It didn’t take long for my mom — who, in her own words, is not “retired” but “reliving” — to take advantage of her surplus of free time. Days after settling into the…
