living with nmo

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 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…

Before I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), I never gave much thought to routine. I’d sleep when I felt tired, exercise when I had the motivation, and take life as it came. But after NMOSD entered my world, I quickly learned that unpredictability was no longer…

A lot can change if you give it time. Seven months ago, I stood on a beach in Mexico, looking out onto the vast ocean. I remember wanting to feel hopeful after enduring flare-up after flare-up of neuromyelitis optica spectrum disorder (NMOSD), and yet also wondering if it’d just…

Volcán de Fuego, a volcano in Guatemala, has been struck by lightning while it erupts. Just think about that for a second — a volcano already spewing lava and ash getting electrified by the sky. It’s one of Mother Nature’s most breathtaking and fearsome displays of power. Some brave souls…

Tonic spasms come on suddenly, last seconds to minutes, and feel like an eternity. They’re a painful and daily reality for many with neuromyelitis optica spectrum disorder (NMOSD). And since my recent transverse myelitis (TM) attack, I’ve been experiencing them multiple times a day. These spasms cause intense…

I’m a prolific list-builder, and there should be a support group for people like me. From grocery lists to bucket lists, from daily to-dos to long-term goals, I have a list for nearly everything. Some might see my habit as overkill, but it’s a way of life for me. If…

March 1 kicks off NMOSD Awareness Month, which aims every year to shed light on the experiences of people living with neuromyelitis optica spectrum disorder (NMOSD). The Sumaira Foundation (TSF) has led the month-long advocacy initiative in the U.S. since 2016, promoting efforts to spread knowledge about the…

I love the fall. It’s the perfect balance of weather between the summer’s heat and the winter’s snow. I love wearing layers of clothing, and when the leaves on the trees change their colors it means we’re closer to my favorite holiday, Thanksgiving. I also love the fall because there…

I’ve always loved driving, especially highway driving late at night. Watching every dash on the road zoom by with the hum of the car is both an exercise in concentration and a form of meditation. I was once an occasional smoker (it was short-lived), and I’m embarrassed to admit…