I’m about to date myself, but hang with me for a sec. Back in my day (which wasn’t really that long ago; I’m not that old), online school was unthinkable. Perpetually online folks like me were seeing the writing on the wall and begging people in power to embrace the…
The thing about visible disabilities is that you can’t really hide them. You can try, but there’s only so much you can do when it comes to a big honking wheelchair. The internet, however, is a completely different story. There’s a freedom to it, a flexibility, that you can’t get…
If you’d asked me a year ago what my plans were for SMA Awareness Month, I would’ve come back with a laundry list of items, from Instagram Reels to the Minnesota Walk-n-Roll event put on by Cure SMA. This year looks a little different. Part of it is…
I was supposed to be preparing for an upcoming work trip to Austin, Texas. Instead, I was sitting in a hospital room, waiting for the doctor on call to look at the area around my gastrostomy tube (G-tube). I’d spent the past several months in a nebulous state of health.
When I graduated with a master’s degree in 2020, people kept asking me if I’d ever go back to school. I looked them in the eye and with all seriousness said, “Over my dead body.” Well, color me pallid, because it turns out I was wrong. It was my mom’s…
Months ago, I had an idea for a column. I wrote it down with the intention of revisiting it around my golden birthday on June 29: “Diagnosed at nine months, given nine years to live, and going on 29.” I thought it was cute at the time, a hook I…
I’d been anxious about our trip to Austin, Texas, for months. I look forward to the annual Cure SMA conference every year around June, but my excitement this time was tempered by a kind of deep-seated dread. I knew it would be fine, but I was still nervous. It…
Note: This column describes the author’s own experiences with naturopathy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I started naturopathy over a year ago without much hope. I was living with a skin condition that no one but…
I was all ready to skip this week’s column, convinced I had nothing to say and no energy with which to say it, when I realized something. I’m burned out. It crept up on me so quickly I barely had time to prepare. One moment I was crafting a plan…
In the stillness of my room, a voice says to me, “You should quit social media.” It’s not the first time I’ve heard this voice. But it’s the first I’ve given it any sort of consideration. It’s 4 a.m. and my brain is a pinball machine, bouncing between thoughts. I’m…
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