When it comes to healthcare, I’ve had remarkably good luck. There are, of course, bad apples. See, for example, the gastroenterologist who rambled about “The Odyssey” as he punctured my stomach lining. Or the surgeon who, in my young, still-developing mind, undeniably had it out for me. (A classic…
The Wolf Finally Frees Itself - a column by Brianna Albers
There’s nothing quite as satisfying as checking an item off your bucket list. Earlier this year, I put on my big girl pants and rescheduled a long-awaited tattoo appointment. It was a whole ordeal — one you’ll remember if you’ve been reading my column for a while. In late January,…
A year after I started fine-tuning the seating of my new wheelchair, I found myself back where it all started. I wrote a few weeks ago about my continuing struggles with the chair. Since then, one of three programming problems has been solved. My seating appointment was meant to…
My first Evrysdi-versary passed without incident. Ironic, considering how much time and effort I put into acquiring the medication. A disease-modifying treatment (DMT) for SMA is no small thing. Spinraza (nusinersen) took the community by storm, with patients around the world petitioning their insurance companies. I wasn’t immune to the…
Last Sunday, my dad took me by surprise. “I don’t have anything planned for today,” he said as he helped me get out of bed. “Let’s do something fun.” I assumed he meant something simple, like getting ice cream or dropping by the grocery store for a bouquet of flowers.
When it comes to new wheelchairs, I’ve been known to drag my feet. My parents love to tell the story of how my last chair sat in our basement library for a year after I got it. In my defense, I was in the midst of a major depressive episode…
It all started so innocently. Let me start with a clarification: I did not fall prey to a multilevel marketing scheme. I will not barge into your DMs with “an opportunity” — or, in other words, a “proposal” — that will benefit the both of us. I’m not trying to…
Like most things when it comes to Sherry, it was a no-brainer. A few weeks ago, I woke to a string of messages in our shared Discord server. An SMA News Today columnist, she’d been asked to participate in this year’s Rare Disease Day (RDD) panel, organized by…
Every 28 days or so, I convince myself that I’m dying. If you’ve read my column before, you’ll know that I have a complicated relationship with death, which is to say I see it everywhere. Years ago, when I first started writing for SMA News Today, I thought I had…
I never think about my life after 7 p.m. Years ago, I stumbled across this particularly helpful life tip. As someone with anxiety, I have a hard time shutting up my brain, especially after the sun sets. Depending on my mood, I can easily get wrapped up in worst-case…
Recent Posts
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- Would it be a ‘tale as old as time’ if Belle were a person with a disability?
- From teacher, to parent, to SMA parent, to grandparent
- On a special night, I’m heading back to dance, cheer, and yes, shine
