I’m feeling funny today — humorous, in fact. Brimming with sarcasm and a splash of laughter, today feels like a cocktail, served over ice and garnished with a tiny umbrella and an extra-long, twisty straw. The main ingredient? Wit, with a dash of mischief. Why? Why not. Every so often,…
Columns
This column has followed me through a year that has asked a lot of my body and my heart. Looking back at what I’ve penned this year, 2025 reads like a bittersweet journal of my relationship with Duchenne muscular dystrophy (DMD), one where grief, growth, pride, and fatigue all…
Advent is the beginning of the church year for Christians. What better way to start the year than with a season of hope? During Advent, Christians prepare for the coming of Jesus, whom we believe is the incarnation of God. He entered our world, becoming human, when he was born…
Words matter. For that reason, I’d like to share my thoughts on language, chronic illness, and how words shape societal views. I believe the way we use language can improve how patients living with rare conditions are seen, understood, and treated by the world at large. I’ve lived with…
Navigating the holidays creates some logistical problems for my family. It’s not because there are nine of us. We might be a big family, but if we can all fit in our average-sized, ranch-style home, then we can fit in most homes. Having three power wheelchair users in the family…
Last month, I attended “The Sun Will Shine,” a jukebox musical staged at The Star Performing Arts Centre in Singapore. I was invited by the SingHealth Patient Advocacy Network (SPAN), a collective of patients and caregivers who offer feedback to improve healthcare services. As someone living with Duchenne…
The holiday season is upon us, and I am already exhausted. I’m well aware of everything I need to do in December, so being this tired already isn’t great. It makes me think about the opening lines of “The Night Before Christmas”: “Twas the night before Christmas when all through…
It’s a wintery Monday morning as I write this. My wife, Wendy, left a while ago for an all-day outing with her knitting group. My daughter Jill, who lives with us, is working downtown today. It’s just as well. They say misery loves company, but I’m better off being by…
I am conflicted about the word “cure.” Dictionary.com defines the noun in several ways, including: “a method or course of remedial treatment, as for disease. Synonyms: antidote, specific, restorative, remedy” and “a means of correcting or relieving anything that is troublesome or detrimental.” In my view, the idea…
I met my husband, Jason, when we were both student athletes at a small college in our hometown. He played football, and I was on the track team. Before we had children and settled into adult life, Jason and I enjoyed going to parties. We had so much fun together.
Recent Posts
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- I have new criteria for when my sons participate in DMD clinical trials
- New gene therapy for OPMD shows lasting success in small US trial