Meeting another patient with neuromyelitis optica (NMO) is a rare occurrence — as rare as this disease. While most of us have incredible support networks, there’s something unparalleled about meeting another person who knows exactly what you’re going through. We don’t have to search for the right words to…
In the weeks between Thanksgiving and Christmas, I usually spend some time thinking about my loved ones and what they mean to me. This year, I thought I’d share a love letter to my husband of 12 years, Mike, in hopes that other neuromyelitis optica (NMO) patients might relate.
I have this recurring dream where I’m trapped in a room. I can hear voices on the other side of the door, so I call out, except my voice feels heavy. The words are caught in my mouth, so no one can hear me. I try to get up. I’m…
Everyone knows that how we treat our bodies affects our health. Our habits, behaviors, and self-care — which include sleep, stress management, a healthy diet, and exercise — all play a role. Yet, somehow we often tend to overlook our skin. Particularly as patients with neuromyelitis optica (NMO), why…
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…
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