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In the 1989 comedy film “See No Evil, Hear No Evil,” the protagonists redefine the phrase “unlikely heroes.” Wally (Richard Pryor) is blind, Dave (Gene Wilder) is deaf, and both are professionals at getting into trouble. When they find themselves at a murder scene and get framed…

Some people live for cold weather. They hate the heat, for some strange, inexplicable reason, and live for the day when they can pull out their chunky knit sweaters and thick, fuzzy socks. I am not one of those people. Aesthetically, I love the colder months. I love candles…

Throughout my life, the doctors, nurses, and other medical personnel who have cared for me have filled out a collective mountain of paperwork. I’m willing to bet that far more of my days have been documented than not. Most charting is electronic now, but there are certainly boxes full…

Contrary to what others may perceive, living with spinal muscular atrophy (SMA) doesn’t come with an instruction manual. Trust me, though, there are many days I wish it did. A common question I’ve been asked throughout my lifetime is how I manage the daily nuances of my…

One thing I’ve learned from not going through Singapore’s formal education system is this: When it’s time to be a working adult, to earn your keep, it’s incredibly hard to persuade someone to hire you if you have a blank résumé. Everyone has to start somewhere to gain…

“Please don’t feel sorry for me when I don’t feel sorry for myself.” These are the words I wish I could tattoo across my forehead anytime I’m out in public. OK, maybe that would be a little over the top. Perhaps I’d settle for a sign hanging from my…

Note: Spoilers ahead for the novel and play. My dad and I recently saw a play adaptation of Stephen King’s “Misery,” perfect viewing for the spooky season. Anyone familiar with King’s novel or the iconic 1990 film starring Kathy Bates and James Caan knows the story. When…

Second in a series. It was a dreary fall afternoon when I told my dad: “By the way, you should know I’m depressed.” I’d been feeling down for a couple of days, to the point where I was starting to lose interest in things that usually bring me joy…

Tim Burton’s “The Nightmare Before Christmas” is a family favorite around here, with my brother being the biggest fan of us all. He even dressed up as the movie’s main character, Jack Skellington, for Halloween one year. This beloved stop-motion animated movie has become a pop culture…

Though I’ve had 20-something Spinraza (nusinersen) injections, my latest procedure proved most eye-opening for me. For almost seven years, I’ve gotten lumbar punctures to deliver this tiny but mighty medicine directly into my lower spine. After a handful of injections, I understood the drill. I knew what…