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…
I didn’t have many friends growing up. Part of it was the disability. Part of it was the mental illness — social anxiety, depression, and a dash of trauma for good measure. And part of it was the desire to not be seen hanging out with “people like me.”…
I’m notorious for despising new wheelchairs. It’s not just the discomfort. It’s the painstaking process of calibration — tweaking and experimenting and grumbling under my breath, because my head needs to be tilted a certain way, and how am I supposed to adjust to a completely different headrest? Not to…
Many, many weeks ago, I said I was going to read “Care Work: Dreaming Disability Justice” by Leah Lakshmi Piepzna-Samarasinha. In a month. Reader, I was wrong. I was busy revising my novel, so it doesn’t surprise me that reading fell to the wayside. But I also think…
Inspired by Susannah Conway, I’ve started to assign a word — yes, a single word — to the upcoming year, as a kind of landmark. Something to focus on as I go through the seasons, so I don’t lose track of what’s important to me. Your word is, in…
