The Evrysdi Chronicles: Waiting for a Diagnosis
Let me set the scene. It’s 9 a.m. I’ve been awake since 6. My poor, sweet dad has been up since 5:30. We’ve been preparing for this gut punch of a medical appointment…
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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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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Doggone It, I Deserve It!
Every once in a while, I get the urge to go to the hospital. I’m not sick. I’m not concerned for my health. But there’s something about hospital stays that, when the stars align,…
Shine Meditations Are Helping Me Build Somatic Awareness
I’m a big fan of mindfulness. In theory, at least. Mindfulness is associated with all sorts of benefits: greater tolerance, focus, and self-acceptance, decreased reactivity, an understanding of negative, self-sabotaging behavior patterns, and…
‘Disability Visibility’ Imagines a Wildly Necessary Future
Content warning: The following contains discussions of ableism and eugenics. I knew from the dedication that “Disability Visibility: First-Person Stories from the Twenty-First Century” would be healing. “To my younger self,” writes editor…
I Think My Dreams Are Telling Me Something
The romantic in me wants to believe that dreams are portents, or windows to the psyche, or invaluable self-knowledge tools. But the therapist in me, who dabbled in clinical psychology for a time, is…
For Some Disabled People, Early Start Times Are Inaccessible
My dad and I are night owls. We rarely leave the house before noon — and when we do, we complain the entire time, like a pair of sulky babies. My mom laughs…
The Truth About SMA Awareness Month
Not everyone likes it. A while back, I was talking to a friend in Singapore who also has SMA. She mentioned that although she wanted to post something for SMA Awareness Month, she…
Storms and SMA: The Opposite of a Love Story
When it comes to storms, I’m a dog with high levels of anxiety. Don’t get me wrong, I love the rain. A gentle rainfall is the perfect backdrop to at least half of my…
Facing My Fear of Surgery Through British TV
I was a bit of an Anglophile in high school. I was obsessed with anything produced by the BBC — “Doctor Who,” “Sherlock,” “Merlin,” even the 2006 retelling of “Robin Hood.” It didn’t help…
I’m Learning to Balance Rest and Productivity
I’m a productivity geek. I’m not content with simply doing things. I want to do them well. And I want to do as much as I possibly can in the time I have left.
Taking Pride in My Disability Is a Revolutionary Act
Many, many years ago, I gave a presentation on the Americans with Disabilities Act (ADA) of 1990. I was in middle school at the time, and was hopelessly devoted to the concept of…
Keah Brown’s ‘The Pretty One’ Speaks to Self-love and Disabled Joy
As someone who avoided the disability community for years, I am slowly learning that I am not alone — my struggles are shared by hundreds of thousands of people across the world. “The…
