During a recent appointment with my general practitioner, I was surprised that I didn’t have to wait. She called my name just five minutes after my scheduled time and apologized for being late, though I didn’t feel that she was. At the start of our visit, she explained that her…
The Beginner's Guide to Walking - a Column by Jennifer V.
Pain is received differently by everyone, but I believe most people with neuromyelitis optica spectrum disorder (NMOSD) develop an unusually high tolerance. Once we adjust to a new normal, we find ways to exist inside it, ways of holding ourselves, bracing ourselves, and moving through the world that help…
It was one of those stressful moments when I simply did what needed to be done. My mother had been visiting us in the city for a couple of weeks, and I was sending her home on the train. Parking here in downtown Toronto is nearly impossible, so my husband…
It’s unusual for Toronto to be hit by two massive snowfalls in one week, shutting down the city and giving kids rare snow days. As a lifelong Canadian, I’m no stranger to snow, although I’m usually fortunate enough to avoid anything major. The downtown skyscrapers in Toronto usually shield us…
Why does it seem like every Google search I do regarding my health blames my weakened immune system for whatever is happening on a particular day? Take, for example, one simple question I innocently asked: “Why are my feet so dry?” Suddenly, I was knee-deep in results suggesting I was…
Do you ever have moments when you stand in front of the mirror longer than you should and don’t recognize the person staring back at you? Sometimes I look at myself, and my tired eyes, stress wrinkles, and bloated face make my appearance unfamiliar. It’s a body that resembles…
I always feel like the start of a new year arrives with a certain amount of pressure. We make resolutions, talk about reinvention, and make quiet promises to ourselves that we’ll do better. As someone living with neuromyelitis optica spectrum disorder (NMOSD), that pressure can feel especially heavy. Chronic…
The winter solstice — the shortest day and longest night of the year — can feel daunting, but I see it as a powerful metaphor for hope, resilience, and the promise of brighter days. I’m writing this from a place of light, so that when the darkness returns, I can…
No one dreams of becoming a patient, especially one who must constantly advocate for their own care. Yet countless people living with neuromyelitis optica spectrum disorder (NMOSD) face this reality every day. Today, we honor Human Rights Day, which commemorates the adoption of the Universal Declaration of…
It’s astonishing how quickly life can shrink down to just the present moment when you’re living with a chronic illness like neuromyelitis optica spectrum disorder (NMOSD). Its symptoms have a way of pulling you into the now with an intensity that can feel all-consuming, whether it’s managing fatigue,…
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- Global study finds genetic signature in blood that identifies NMOSD