Daily living

I’ve been a list builder for as long as I can remember. Even as a kid, I found comfort in writing things down, mapping out what needed to be done, and crossing items off one by one. Lists gave me structure. They still do. I like to stay busy, not…

Ever get that quiet, nagging sense that something in your body just isn’t right? For me, it started with extra trips to the bathroom — nothing dramatic, just enough to make me pause. Before long, I realized I was dealing with yet another bladder infection. Living with a rare autoimmune…

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…

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…

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…

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…

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…

The moment I slip into a pair of high heels, something shifts. Not only do heels lengthen my legs, but they also boost my confidence, improve my posture, and give me a sense of power. It’s not just about fashion, but also what I associate with high heels: the ability…

I always know when it’s been a busy week because my body tells me so. My muscles ache, I feel weak, and a burning sensation finds new areas of my body to light up. I can’t just power through my weekend like others might, enjoying fun activities after the mundane…