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Feeling misunderstood is one of the biggest challenges I face with neuromyelitis optica (NMO). This week, we took our daughter sledding with a couple of friends. Sledding is a Canadian rite of passage, though I’ll admit it feels dangerous most of the time. Our brave 9-year-old, prepared with a helmet,…

Most nights, I can’t wait to go to bed. I’ll rush through my bedtime routine, but even though I’m beyond exhausted, I can’t seem to fall asleep. It secretly irks me to be the only one in my household still awake at night. Even my pug, Magnus, who normally barks…

During the six weeks that my daughter Bella, 13, was hospitalized at Children’s Hospital Colorado for a neuromyelitis optica (NMO) attack in 2017, my husband and I kept vigil at her bedside. Too worried to sleep, we prayed for a miracle every night. As soon as we received Bella’s…

Neuromyelitis optica (NMO) isn’t all bad. Hear me out. Sure, the needles, pain, and endless worry about permanent paralysis and vision loss are no fun, but there’s a silver lining if you know where to find it. At the start of every year, I think about all of the people…

I am one of the few lucky ones who really enjoy what they do for a living, but that’s probably because I’ve taken control of my destiny. I am constantly reinventing myself and building the career I want. This became even more important after I was diagnosed with neuromyelitis…

After experiencing all of the challenges that came with my 13-year-old daughter Bella’s neuromyelitis optica (NMO) diagnosis and the rareness of the disease, I wanted to find a way to connect with other NMO patients and caregivers. Bella was so young that I felt I needed the connections to…

As the COVID-19 pandemic rages on, many families are concerned about the holidays. I’m trying to approach the season with patience, but as someone with neuromyelitis optica (NMO), I’m also tired, frustrated, and scared. Living with this disease and taking immunosuppressants means I’m at a higher risk of becoming…

I noticed recently that my left eye was irritated. It felt sunburned, which seemed odd given that it’s late autumn on the west coast of Canada, which means it’s chilly and wet. It was bothering me enough that I looked in the bathroom mirror to see what the…

Tattoos have always been a form of expression. Throughout history, tattoos have been used to convey love and grief, depict religious symbols, and even serve as a form of punishment. The oldest known tattoo was found on “Iceman,” a mummified corpse who lived 5,200 years ago. The art of…

Some people are natural-born performers, leaders, artists, lawyers, doctors, or teachers. I like to say I was born to be a caregiver. Some of my first memories are watching over my younger sister and cousins while we were growing up. I like to think that caregiving is something that runs…