I’ve dreamed of cures. Miracles that occur in the blink of an eye. One minute, I’m sitting in my wheelchair, and the next, I’m standing, walking, running. I’m wobbly on my feet, of course, and crying, because everything has changed, and I’m probably overwhelmed by the newness of it all…
The Wolf Finally Frees Itself - a column by Brianna Albers
According to my mother, my columns are the first result when you Google “Evrysdi (risdiplam) denial.” Which isn’t surprising. I’ve written several scathing columns about the application process, from verifying my diagnosis to correcting blatantly false insurance claims. The squeaky wheel gets the grease, or so the…
I see things that aren’t there. The writer in me realizes that, at first blush, this sounds like the opening line of a young adult novel. Take, for example, Maggie Stiefvater’s “The Raven Boys,” which opens with, “Blue Sargent had forgotten how many times she’d been told that she would…
My first instinct was to scream. After weeks of waiting, and days of researching clinics and time slots, I finally received the prized text message: “Brianna and 2 caregivers have been selected for the COVID vaccine.” I screamed, then sent an all-caps message to a group chat with friends that…
Time has no meaning anymore. I barely know what day it is. I’m safe in my self-contained bubble of cat cuddles and electric blankets. I rarely ever leave the house. Most of my doctors offer virtual visits (the sole upside to a pandemic), but there are some things that have…
It’s become a sort of ritual. Once every few weeks around 3 p.m., my mom will drop by my room. “So,” she’ll say, with ridiculous amounts of forced brightness. “So.” Code word for “We need to talk.” Code word for “I just checked the mail, and you’re not going to…
You already know that for the longest time, I didn’t want friends with SMA. I was young and desperate to be seen as “cool” (whatever that means), but more than that, I was dumb. I thought that being seen with “people like me” would ruin my street cred —…
We all know that I hate getting up early. Just like I hate adjusting to a new wheelchair — I’ll do it if I have to, but that doesn’t mean I won’t complain about it. So you can imagine my dismay when my caregiver sent me the most dreaded…
When it comes to “Lost,” you either hate it, love it, or don’t get why people feel so strongly about it. I’m in the second camp, which is to say I feel strongly about the groundbreaking and controversial TV show. The writer in me is obsessed with everything from the…
For the longest time, winters were a joyful occasion. It wasn’t that I liked the snow, or the sickness, or the slog of self-isolation. I didn’t want to stay home for a third of the school year. I didn’t want to wrestle with long division and cellular anatomy all by…
Recent Posts
- This Christmas, I’m thankful to have resolved some health complications
- No one knows what they’re doing and everyone is doing their best
- Itvisma approval ushers in era of therapeutic choice for SMA patients
- There’s no place like home for the holidays
- Newborn screening for SMA boosts health, saves money: Study review
