Note: This column contains spoilers for the musical “Wicked.” A few weeks ago, I saw the award-winning musical “Wicked” with my sister-in-law. I saw the show back in 2012 with my parents in New York City, and I jumped at the chance to buy tickets when I saw…
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I’d just survived a car accident in Phoenix while road tripping with my parents from our home in Minnesota to the 2022 Cure SMA conference in Anaheim, California. (Long story short, my dad ran over a particularly nasty curb in a gas station parking lot. Any other vehicle…
In the SMA community, we expect to grieve the loss of our abilities, given the nature of this disease. But for me, grief often feels like an ambush. In my three decades of life, I’ve lost many abilities. And every ability lost comes with its own grieving period.
So much of life is about gaining maturity through our experiences. Sometimes we go through events similar to ones we’ve experienced before, but we now understand them from a whole different perspective. A few months ago, I shared here that my back was to the wall. I need night care…
I spent a small fortune on cute books for the kindergarteners I taught at Brockman School, then a self-contained public school in Columbia, South Carolina. The students, many with severe disabilities, delighted in hearing the animated voices of the stories I read to them. My own children, Matthew and…
For months, I waited in anticipation of July 22. I was going to be on a promotional panel for “Not Without Us: Perspectives on Disability and Inclusion in Singapore,” a book I contributed a chapter to last year. Before I’d even signed the contract, friends and family asked me…
In every popular sitcom, there’s always a central setting for the characters to congregate. For some it’s a workplace, such as the Dunder Mifflin branch in “The Office” or the government building in “Parks and Recreation.” Other shows feature a shared living space, such as the geek-decorated apartment in “The…
When I was a kid, I spent many mornings and afternoons sitting on a padded blue bench with a table in front of me. I spent this time playing with my action figures, drawing, and immersing myself in Saturday morning cartoons. Kids, there was a time before streaming services when…
You wouldn’t know this just by looking at me or the pictures I post on Instagram, but I’m hiding something. I imagine myself and this secret I carry as though it were a light switch. When people are around or I’m out in public, I do my best to…
Sunday afternoon’s dreary skies and light rain tempted me mightily to crawl onto the recliner and drift right off. I doubt I could’ve counted to 10 before unconscious bliss took over — momentarily, anyway. It was also a dreary day for our older dog, Maple, a boxer whose mobility virtually…
