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,…
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…
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…
When in the course of human events, it becomes necessary to make choices, we must first consider our options. Congratulations! By reading these words, you have made a choice to crawl into my brain (terrifying) for a few moments and learn about what is currently on my mind. If you…
I’ve always had a robust sense of humor. Some people have told me that I’m witty and quick to respond to a funny situation while also defusing tense conversations with laughter. I think it’s a piece of my armor that protects me from my rare chronic illness, limb-girdle muscular…
“He who has a why to live can bear almost any how.” — Friedrich Nietzsche I love a good quote as much as the next person. When I was teaching music in middle school, I’d sometimes write inspirational or thought-provoking quotes on the whiteboard to encourage conversation or reflection. At…
Dear doctors, I am writing to share my knowledge about living with a rare, chronic condition called limb-girdle muscular dystrophy. There are many types of muscular dystrophy (MD), ranging in age of onset, severity, and common symptoms and comorbidities, such as heart and lung involvement. But…
I’ve written columns about community and connection. I chose these topics because they’re relevant not only to those of us with rare, chronic conditions, but to everyone. I write through the lens of living with limb-girdle muscular dystrophy, but I strive to connect to all of society.
Living with muscular dystrophy for 40 years has taught me many things. I’ve written here about the importance of connection, support, and our shared value as humans. Connections can lead to another cornerstone of our existence: community. We join our first community, our immediate family, as soon…
There is power in connection. As humans, we all learn this truth at a young age, starting with the people around us when we’re little: our family. As we grow, we connect with other kids at school, in church, and elsewhere in the community, and just by existing every day.
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