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…
I always knew I was rare. From the motorized wheelchair to the feeding tube, there’s no mistaking me for normal. No matter how hard I try to blend in, I always stand out, to the point where I’ve pretty much given up. Why pretend to be something I’m not? Why…
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…
Last January, I wrote about shoes. At the time, I was gearing up to get a new wheelchair. Those who are familiar with wheelchairs will recognize this process for what it is: absolute agony. From seating to driving to minuscule issues that you can’t pinpoint for the life of…
In 2019, something wonderful happened. I got bit by the tattoo bug. If you’ve followed my column for a while, you’ll know my first tattoo was a big deal. First, it was finding an artist I vibed with. Then it was finding an accessible parlor — no mean…
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