Working with the biotech company Genentech never ceases to amaze me. Back in 2019, when Genentech representatives first reached out to me about an upcoming initiative, I had no idea what to expect. They wanted me to attend a meeting, along with several other people in the SMA…
After two years of tweaking, my new wheelchair is home for good. I think. Most wheelchair users dread new devices. There’s the process of submitting the claim to insurance, which is frankly straight from hell. Then there’s the seating — a monthslong process that involves strangers studying your body…
You know when something is wrong, but you can’t put your finger on what, exactly, that is? The past week has been an exercise in expecting the unexpected. I woke up Wednesday morning to a weeks-early period. “Fine,” I thought. “I’m flexible. I can adapt. This is no big deal.”…
It all started with a little pink pill. I’m allergic to everything under the sun. Thanks to a complex, multistep treatment regimen, I more or less have my allergies under control. But there are days when not even my trusty Mucinex Sinus-Max nasal spray will do the trick. I’m…
Content warning: The following contains mentions of medical trauma and death. I knew something was wrong. But I didn’t always. When my friend and fellow columnist Sherry Toh messaged me one evening to say she was sick, I assumed it was a cold. She would disappear for a few days…
I hoard poems like others hoard sports trophies. It’d be an exaggeration to say that I have a poem for every emotion under the sun. But I do have ones that stick with me, that ring through my head like a chant. Take, for example, Richard Siken: “Tell me how…
I rarely ever cry. That’s a lie. I cry an average amount. I’m especially sensitive in moments of stress or tension. I’ve been known to burst into tears at the first sign of confrontation, which, as I’m sure you can imagine, is less than great for my reputation. But I…
By the time you read this, my dad will be back where he belongs. I am, of course, joking. My dad has a life outside of his caregiving duties, as he should. But there’s some truth to the claim that, in his absence, things tend to fall apart. If…
When it comes to COVID-19, I’ve been pretty darn lucky. I can count on one hand the number of people I know who haven’t gotten COVID-19 — myself among them. Somehow, miraculously, I’ve managed to avoid the plague. I could attribute my health to literal years of quarantine, but the…
Late last month, I posted a Reel for Disability Pride Month about comparison. I’ve written previously about jealousy and the dangers of comparing yourself with others, especially when you’re living with a chronic illness like SMA. You lose perspective. You start to blame yourself for things that are…
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