Persistence is key when living with SMA
On a rainy day in April, I write the final words of my third novel: “The End.” If you follow me on social media, you’ll know this book has not been without its hiccups. I won’t get into the…
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
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 “Dragon Age: Inquisition” (DAI), the…
Read more
When growing older, surviving SMA is more than enough
I’m listening to my caregiver’s daughter talk about life as a first grader when I realize … I’m old. I don’t know when it happened. One minute, I was graduating high school, and the next I was turning…
How self-comparison can lead us down the wrong path in life
Every once in a while, I’m seized with unbearable jealousy. That’s not true. It isn’t jealousy so much as a sense of falling behind. Social media, while great for some things, is horrid when it comes to self-comparison.
I’m learning to recognize big ‘T’ trauma in my own life
Jokes are my coping mechanism of choice. If there’s tension in the room, you can bet I’m trying to come up with some way to lighten the mood. I pride myself on staying as chipper as possible, even in…
How a clogged feeding tube brought me to the edge of death
Content warning: This column discusses medical trauma. Last in a series. Read part one here. I knew something was wrong when I started throwing up. After an eight-hour wait in an emergency room far from home, I’d finally…
When a last-minute trip takes a turn for the worse
Content warning: This column discusses medical trauma. First in a series. Who really knows what time it is? 11? 12? 1? Time blurs when you’re on the precipice of something that will throw a wrench in all of…
‘Into the Unknown’: Embracing the unexpected in life with SMA
When I chose my theme for 2024, I didn’t expect to take it for a spin before the year even started. Every December, I start thinking about a word or phrase that will guide me through the next 12…
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 being particularly contractive. She struggled…
‘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 amount of blood. Normally, I…
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 am not one of those…
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 adult care as someone with…
