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“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…

A 15th birthday is a special event for a teenager. Whether you have a big celebration with lots of friends and family, or a small gathering with loved ones and furry friends, having the opportunity to celebrate another trip around the sun is memorable and fun. In my Mexican culture,…

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…

The human body is a fascinating and mysterious thing both to understand and to listen to. Personally, I think hiccups are one of the most annoying things our bodies do. They seem to come at the worst time and last longer than we’d prefer. Growing up, my siblings and…

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…

A few weeks ago, the EveryLife Foundation for Rare Diseases hosted its 12th annual Rare Disease Week on Capitol Hill. This year, 600 advocates, including me, gathered in Washington, D.C., to learn about public policy, share our stories with legislators, and advocate for our communities. I never dreamed…

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…