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.”…
Columns
Nearly a month into 2021, I think it’s safe to say we’re all glad to have left 2020 behind us. It certainly wasn’t an easy year. Its hardships likely will go down in the history books. Around the globe, we saw a devastating pandemic, raging wildfires, and a…
The day after Christmas marked one year since I began this whole self-quarantine thing. And the most unnerving part about it is that I have yet to receive my trophy to commemorate this milestone. That may be a bit of an exaggeration, but there is logic behind my reasoning. After…
To make my sometimes hazardous life with SMA less scary and more exciting, I tend to think of myself as a pioneer. As my previous column noted, I carry a lot of “baggage,” or experiences, during my travels. In 1803, as PBS noted, U.S. President Thomas Jefferson commissioned…
Before I turned 2, I loved watching “Wunda Wunda,” a children’s educational program on a local channel that showcased puppets, stories, and songs. My mother, preparing for the birth of my brother, couldn’t move quickly enough to turn the television off at the end of the show, and…
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…
“I wish I were normal,” I used to say to my mum. I told her this at other kids’ birthday parties, when they played musical chairs or went on scavenger hunts. I said it during emergency hospital stays and in front of the TV, when…
When I say, “I don’t need my SMA to be fixed,” I mean it from the bottom of my heart. Last month, I set sail with my first dose of the new disease-modifying therapy Evrysdi (risdiplam). It was a choice that required careful consideration of my options and…
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…
Last summer, I met a new friend, Amber Bosselman, at the Virtual Cure SMA Conference. Amber is a certified life coach with a bachelor’s degree in psychology. She uses her knowledge to…
