The Wolf Finally Frees Itself - a column by Brianna Albers

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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.

Rediscovering My Love of Lego Star Wars

In my mind, Luke Skywalker was in love with me. For context: I was never much of a Lego girl. But I was a “Star Wars” girl. It stood to reason, then, that the Lego Star Wars games were right up my alley. I loved everything to do with…

Healthcare Is Rarely a Walk in the Park

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…

My New Tattoo Is a Dream Come True

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,…

My Latest Wheelchair Woes May Soon Be Over

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…

Celebrating My 1st Evrysdi-versary and Looking to the Future

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…

Thanks, but Your Prayers Really Aren’t Necessary

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.

Giving Up Isn’t a Personal Failure

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…

Surprised by the Benefits of Gummy Vitamins

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…

The Recent Rare Disease Panel Made My Year

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…

I’m Starting to Weather the Midwinter Bleakness

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…