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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…

The human body is fascinating for many reasons. Our body speaks to us throughout the day, letting us know when we are hungry, tired, full of energy, sick, or in pain. It’s a temple we must nourish, listen to, and treat well. Sometimes our body screams at us to…

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…

Being diagnosed with a rare illness such as neuromyelitis optica (NMO) can be devastating, affecting everything from day-to-day life to relationships, work, and finances. When my youngest daughter, Bella, was diagnosed with NMO in 2017 at the age of 9, she spent six weeks in the hospital, and…

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…

Advocacy is the action of advocating, pleading for, or supporting a cause or proposal. I’m a firm believer that we’ve all been an advocate or benefited from advocacy at least once in our lives. Personally, I’ve been able to experience the blessing of both having an advocate and working to…