As I watched actress Selma Blair try to formulate a sentence in her 2021 documentary, “Introducing, Selma Blair,” I couldn’t stop the tears from running down my face. I didn’t mean to watch it alone, sitting in the dark, but I’m glad I did. My heart ached for…
When I first became sick with neuromyelitis optica (NMO), people often told me how sorry they were. I believe they genuinely meant it, but it’s always an uncomfortable and awkward conversation for both parties. As the patient, I never want people to feel sad, so my natural response…
Last month was my 41st birthday. A celebration is often a pipe dream, resulting in me feeling drained as the day approaches and then doing nothing. This year was different, though; I had no big plans except eagerly waiting while my husband installed my new birthday gift. I had requested…
There are so many things I still want to do in life. I never stop. Perhaps it’s because I feel that I’m up against a clock. I constantly wonder how long it will be until my neuromyelitis optica (NMO) takes over and I am further limited in energy and…
The greatest challenge I’ve had to overcome as someone with neuromyelitis optica (NMO) — something I’ve heard echoed by other patients — is the need for better support. This begins with the expectations we each have of those in our lives. When those expectations aren’t met, we…
While here in Canada we celebrate Thanksgiving a little earlier than our friends in the United States, I feel it works to my advantage. I treat the Thanksgiving holiday — which falls on the second Monday in October in Canada — as the start of a period of…
I am scared of dying. This is a truth I have avoided saying out loud or acknowledging for the last 13 years. When I was diagnosed with neuromyelitis optica (NMO), I Googled the disorder, and the internet only gave me five years to live. My loved ones found…
My family has recently become obsessed with the “Overcooked!” video game. With up to four players, we work against the clock chopping vegetables, frying fish or meat, and assembling plates, all while going up against obstacles like the frozen tundra or mice that steal your supplies. It’s incredibly…
It feels like there’s a test for everything. As I hit milestones with neuromyelitis optica (NMO), a rare autoimmune disease that can affect the spinal cord and optic nerves, I am subjected to more tests. The latest was a bone density test, also called a dual-energy X-ray absorptiometry (DEXA)…
Over the weekend, I took my daughter to her first in-person birthday party in almost three years. Fate can be cruel sometimes, which is how I found myself at an indoor jungle gym. I forgot how loud children’s screams and high-pitched voices can be, especially when amplified by the warehouse-turned-gym…
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