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“It’s like heaven and hell at the same time.” That’s my response whenever I meet another neuromyelitis optica spectrum disorder (NMOSD) patient who asks me about our Canadian healthcare system. Don’t get me wrong: I’m an incredibly proud Canadian. There are wonderful aspects to our “Great North,” including our…

“The world breaks every one and afterward many are strong at the broken places.” — Ernest Hemingway, “A Farewell to Arms” One of my favorite things to do is prepare a meal while a good friend is seated at my kitchen bar, a wine glass or cup of tea in…

One of my greatest pet peeves since my diagnosis with neuromyelitis optica spectrum disorder (NMOSD) is when people tell me it’s OK to be sick. I don’t need their permission to be who I am. What they’re really saying, though, is that they expect me to be a…

The past few years have been challenging for me, my family, and especially my youngest daughter, Bella, who in 2017 was diagnosed at 9 years old with neuromyelitis optica spectrum disorder (NMOSD). At the time, the best course of therapy recommended by Bella’s neurologist was Rituxan…

When you’re newly diagnosed with a rare disease, you have no idea what you’ll need to endure for the rest of your life. The shock of the diagnosis takes up all your energy, and you’re forced to live in the moment. There isn’t time to think about your future.

My obsession with clean teeth started long before my neuromyelitis optica spectrum disorder (NMOSD) diagnosis. As a child, I had more than my share of visits to the dentist — enough that as an adult, I’d do anything to avoid going. Unfortunately, I had braces as a child…

I never wanted to be a disability advocate. I don’t know anyone whose childhood dream involved advocacy of any sort, but something happens, or you witness an injustice you can’t turn away from, and a champion is born. I was born an advocate, except I didn’t know it until that…

Neuromyelitis optica spectrum disorder (NMOSD), my rare autoimmune disorder, forever throws new symptoms at me when I least expect them. To combat these surprises, I’ve had to create several unconventional coping mechanisms, many of them funny, awkward, or downright silly, especially to others who might witness them. Following…

This journey with neuromyelitis optica spectrum disorder (NMOSD) is long, so I’ve always found it important to appreciate those who support and care for me. And my neurologist has been with me since the beginning. When I matched the criteria for NMOSD, which includes optic neuritis and…

“Mama, can we ride one more roller coaster, please?” I looked at Sophie’s desperate face and could see her excitement waiting to boil over. At 10 years old, my daughter is a tiny daredevil. The bigger and faster the ride, the louder she laughs. I knew she wanted to…