The Beginner's Guide to Walking - a Column by Jennifer V.

One of my greatest pet peeves since my diagnosis with neuromyelitis optica spectrum disorder (NMOSD) is when people tell me it’s OK to be sick. I don’t need their permission to be who I am. What they’re really saying, though, is that they expect me to be a…

When you’re newly diagnosed with a rare disease, you have no idea what you’ll need to endure for the rest of your life. The shock of the diagnosis takes up all your energy, and you’re forced to live in the moment. There isn’t time to think about your future.

My obsession with clean teeth started long before my neuromyelitis optica spectrum disorder (NMOSD) diagnosis. As a child, I had more than my share of visits to the dentist — enough that as an adult, I’d do anything to avoid going. Unfortunately, I had braces as a child…

I never wanted to be a disability advocate. I don’t know anyone whose childhood dream involved advocacy of any sort, but something happens, or you witness an injustice you can’t turn away from, and a champion is born. I was born an advocate, except I didn’t know it until that…

Neuromyelitis optica spectrum disorder (NMOSD), my rare autoimmune disorder, forever throws new symptoms at me when I least expect them. To combat these surprises, I’ve had to create several unconventional coping mechanisms, many of them funny, awkward, or downright silly, especially to others who might witness them. Following…

This journey with neuromyelitis optica spectrum disorder (NMOSD) is long, so I’ve always found it important to appreciate those who support and care for me. And my neurologist has been with me since the beginning. When I matched the criteria for NMOSD, which includes optic neuritis and…

“Mama, can we ride one more roller coaster, please?” I looked at Sophie’s desperate face and could see her excitement waiting to boil over. At 10 years old, my daughter is a tiny daredevil. The bigger and faster the ride, the louder she laughs. I knew she wanted to…

I’ve always loved driving, especially highway driving late at night. Watching every dash on the road zoom by with the hum of the car is both an exercise in concentration and a form of meditation. I was once an occasional smoker (it was short-lived), and I’m embarrassed to admit…

Dear Reader, It’s me, Jennifer, hoping you don’t mind if I occupy the tiniest space in your mind for the shortest amount of your time. This request is because I feel insignificant right now. When people point out that I’m sick, when they comment on visible symptoms of my…

Dear Past Self, I know you were blindsided by this diagnosis. You’re justified in feeling that it’s unfair, because it is. No one around you has heard of neuromyelitis optica (NMO), even the doctors treating you, but I promise that everything will be OK. This is the first…