Brianna Albers (she/her) is a crip cyborg storyteller living in Minneapolis-St. Paul. In 2016, she founded Monstering, a magazine for disabled women and nonbinary people. She consults as a patient ambassador for SMA My Way and writes the column “The Wolf Finally Frees Itself” for SMA News Today. She is currently revising THE SAINT AND THE SPIDER, an adult space fantasy with #OwnVoices disability representation. Find her on social media @briehalbers.If you’ve been keeping up with my column, you’ll know that my parents and I are essentially living in a no-fly zone (only our closest friends are allowed to visit because the house is a mess and also probably a health hazard). There…
Before I knew what illness anxiety was, I made excuses for my ever-present fear of death by the common cold. “I was supposed to die at 9 years of age,” I tell people, watching their faces screw up with realization. “I shouldn’t be…
When I first met Elena, my patient care assistant’s daughter, she was almost 2, with chubby cheeks and golden ringlets of hair. She was shy — painfully so. It took her months to warm up to me, and even then she…
Everyone and their mother is talking about Zolgensma (AVXS-101). Just like what happened with the release of Spinraza (nusinersen), people everywhere are sharing links to news stories on the groundbreaking new medication. I feel more or less the same as I did in 2016 when…
It’s been, as they say, a day. My parents bought an airplane hangar and are transferring it to our vacation home in Wisconsin. My dad wants to turn it into a work shed, whereas my mom envisions it as an antique store…
I write a lot about brokenness. I always have. It’s one of the themes of my work, not only as a writer — but also as a (future) mental health professional. Looking back, I’m sure it has a lot to do with my childhood, and the…
I’ve always been a night owl. It’s a running joke in our family: My dad and I stay up until 11 p.m. or midnight, while my mom has a strict schedule comprising 8:30 p.m. bedtimes. She gets far too much enjoyment out of our morning grumpiness. If she’s…
I have a reputation in my group of friends for not knowing any music. It’s gotten to the point where my friends have started making playlists of music that I missed out on in high school, such as Rihanna and The Black Eyed Peas. Sometimes when I’m on…
The thing about taking amoxicillin every day for years is that your body builds up an immunity. It works for a while, and then, without warning, it doesn’t, which is why it’s more or less a stopgap measure. You take it until you can’t,…
I was recently asked about resources in the SMA community — what’s available, but also what’s missing and what we would most benefit from. Before I started this column, I didn’t really have much contact with the community. I went to…
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