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

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…

My family and I always laugh about my inability to keep plants alive. In my defense, if something isn’t hollering at me for attention or sending me email reminders, I can’t be responsible for watering it. I have never described myself as the nurturing type. However, I am competitive, so…

There’s nothing more frustrating than working hard to reach a milestone, only to be knocked down and have to start all over again. That’s what it’s like having neuromyelitis optica (NMO). My toughest days happen when I’m frustrated with my body. What worked yesterday suddenly might not work today.

I could feel the discomfort in my throat start to build. Despite how often I cleared my throat, I couldn’t make the feeling disappear. Next, I tried a large glass of water, but the sting with every swallow confirmed my worry: I’m sick. As a neuromyelitis optica (NMO) patient…

We all want to belong, but having a rare disease can sometimes feel lonely. Thankfully, the neuromyelitis optica (NMO) community has come a long way since I was diagnosed over 13 years ago. I’ve come a long way, too. Acknowledging that March is NMO Awareness Month is a…

I sometimes joke that if I had served in the military, I’d win diversity bingo. As a minority woman with a disability, there are many boxes to check off on a self-disclosure form. I am self-absorbed, though, and it’s time I do better. Within the rare disease community, many patients…