Independence

What does it take to be a rare disease patient? An immense amount of time and patience. Buckets of both, preferably refillable. Even when you think things have settled and you’re managing your health well, something pops up. After many years with neuromyelitis optica spectrum disorder (NMOSD), I’ve come…

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 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 was born in a small town two hours away, but Toronto has been my home for more than two decades, and it’s where my husband and I are raising our daughter. Recently, while hosting one of her schoolmates for the week, we decided to play tourists in our own…

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…

As a private person, I find it easier to have an invisible disability, despite the emotional toll of appearing “fine” while feeling far from it. For years, I was able to privately manage my symptoms, and I wasn’t constantly asked if I needed help, which allowed me my independence.

It had to be something special for me to break my silence on X (formerly known as Twitter). I had to share my support for actress Christina Applegate after she appeared at this year’s Emmy Awards in mid-January. Applegate has multiple sclerosis (MS), which has many similarities…

Second in a series on visiting Disney World with a disability. Read part one. Big crowds make me nervous. Should someone bump into me, I can easily lose my balance. And the risk of infection weighs heavily on me, given my weakened immune system. A nearby sneeze triggers…

First in a series. Christmas, a bustling time for all, becomes particularly challenging for patients like me who have neuromyelitis optica spectrum disorder (NMOSD), as it can take us out of our routine and add unwanted stress. One holiday memory stands out and is yet to be beat:…

When was the last time you Googled your name? When I do it, I find my column here at Neuromyelitis News. My work as a post-secondary teacher is rewarding, but it’s also important to demonstrate my expertise. That’s why many of my students search for my professional profile…