The Beginner's Guide to Walking — Jennifer V.

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,…

I’m embarrassed that I was embarrassed. I was walking out of the conference hall with some new acquaintances, making polite small talk about how my firm could support their work — the things you say when you’re trying to make a good impression — and we said our goodbyes and…

They say that time heals all wounds, but when you’re living with a rare autoimmune disorder that has no cure, every relapse leaves lasting damage, both emotional and physical. Last week, I attended a patient day for the neuroinflammatory community here in southwestern Ontario, Canada, where I had the opportunity…

It’s a weird feeling, always waiting for the other shoe to drop, knowing there’s a secret assassin lurking in my body. It causes me anxiety. That’s what life is like with neuromyelitis optica spectrum disorder (NMOSD), which I’ve had for 16 years. Lately, though, I’ve been OK, as I…

The kitchen is humming with energy, my daughter has decked out our living room in a sea of blue and white, and the scent of homemade nachos wafts through the air. It’s October in Canada, and the Toronto Blue Jays are making a run for the World Series, the first…

One of my greatest fears has come to fruition. Last week, my daughter was diagnosed with vitiligo, a disorder that causes the body’s immune system to attack skin cells that produce melanin, causing the skin to lose its color. Upon hearing the diagnosis, I felt the air leave my lungs,…

The first time I sat in the infusion chair to receive Ultomiris (ravulizumab-cwvz), I felt something I hadn’t experienced for a long time after being diagnosed with neuromyelitis optica spectrum disorder (NMOSD): hope. I needed this therapy to bring stability back to my life, to spend less time in…