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…
Columns
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…
January marks the eighth anniversary of when my blog came to life. I was never much of a writer prior to launching my blog. In fact, when I announced that I’d be blogging in between classes and schoolwork during my final semester of college, my family…
Doesn’t it feel like we all carry a lot of baggage in life? If we could just forget about all the negatives, we could live on cloud nine. What if I told you that we would be permanently stuck on ground level, going nowhere in life, without all the heavy…
Kudos and a whew! to us all for surviving 2020. Vastly understated, last year was memorable. Overall (and thankfully), my family managed to welcome the new year intact. However, a second loss connected to my teaching stint at Brockman School hit hard. Brockman, a self-contained school for students with orthopedic…
