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Making Every Second Count While Waiting for a Miracle

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…

Why Work Is Important to Me as an NMO Patient

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…

Finding Connection and Community in Support Groups

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…

The Misery of Shingles

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…

How I Found My ‘Courage to Care’

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…

How to Respond to the Dreaded Question, ‘How Are You?’

¿Cómo estás? 你好嗎 Ça va? How are you? With the holiday season upon us, people are getting together, hopefully safely, considering the persistent COVID-19 pandemic. While I always enjoy seeing friends and loved ones, I find it uncomfortable when I’m asked difficult questions like, “How are you?” While the phrase…

The Importance of Health Literacy

When we are diagnosed with neuromyelitis optica (NMO), it can feel like we’re being pushed into the deep end of the pool and left to sink or swim on our own. Navigating a whole new life with a rare disease can be confusing and overwhelming. Part of that feeling…