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…
Late August marks the start of a new school year, which still affects me even as a 29-year-old working adult. Though I graduated from college in 2016, my niece is starting first grade, my older nephew starts preschool in a few weeks, and both of my younger nephews are back…
In another world, I am my mother’s daughter, waking with the sunrise and heading to bed no later than 9 p.m. But in reality, I take after my father, who sees early risers as the enemy to end all enemies. We both hate mornings with a passion, and have designed…
Our cat, Toby, waltzed into our family over a decade ago for what was intended as a temporary arrangement. She won our affection quickly, and we decided to welcome her into our home indefinitely. Not that she needed an invitation to stay. Toby said she owned the place, and who…
Living with SMA, I too often don’t feel in control of my body. It’s an unsettling feeling to sit with. Some days, no matter how hard I try to take care of myself, my body has its own agenda. Lately, this feeling has been weighing heavily on my…
Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “The drug likely won’t be effective on you. You’re in your 20s, and you’ve deteriorated to the point where you…
