The Beginner's Guide to Walking
— Jennifer V.

When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), my greatest frustration wasn’t my inability to walk, the numerous tests and MRI scans, or even the number of needles. It was trying to articulate the severity of this disorder to my parents. My parents were both Indonesian, raised…

If I take a minute to pause, I find myself in disbelief when I think about everything I’ve endured with neuromyelitis optica spectrum disorder (NMOSD). It’s as if all those difficult moments are pieced together as flashbacks that make up a terrifying mind movie, one I never auditioned for,…

This post is for the ladies, although I’m going to assume that the men won’t mind eavesdropping. After all, 80% to 90% of neuromyelitis optica spectrum disorder (NMOSD) patients are women. While this is a gender-skewed conversation, trust me, the struggle is universal enough to be educational. There’s…

Living with neuromyelitis optica spectrum disorder (NMOSD) means I’ve become something of a detective. I’m not the glamorous kind with a trench coat and a magnifying glass like Sherlock Holmes, but more like a tired, slightly bewildered Inspector Gadget who wakes up every morning trying to figure out what’s…

As someone living with neuromyelitis optica spectrum disorder (NMOSD), I have learned that life is a delicate balance between caution and courage. There are times when rest is essential and times when I need to push myself beyond my comfort zone. Protecting my health doesn’t mean putting my life…

After a long and exhausting day at work, I drove in silence, first picking up my daughter from camp and then my husband from his office. I knew the inevitable question was coming: “What should we do for dinner?” When it did, I felt overwhelmed. It wasn’t that I didn’t…

I’m always reminding my friends to take whatever wins they can get, because life is hard. This is especially true when it includes neuromyelitis optica spectrum disorder (NMOSD). Before my life with a chronic illness, I took a lot of things for granted. I moved through the world without…

If you had asked me years ago what productivity meant, I would have rattled off the usual corporate nonsense: doing more, pushing harder, staying available, and proving I could outrun exhaustion like it was a competitive sport. I treated productivity like a personality trait, something I could earn through sheer…

When I was younger, I thought confidence was something people were born with. Some people just seemed to have it. They’d walk into a room without second-guessing themselves. They’d voice their opinions without rehearsing them in advance. They’d wear whatever they wanted and somehow never appear to care what anyone…

My best friends are my rock. They are my confidants, my vault, and the keepers of my dreams. They drop everything, no matter the hour, no matter the chaos, to be there for me. If loyalty were a sport, they’d be Olympic level. And while I live with neuromyelitis…

One of my earliest memories is of my mom balancing what seemed like an impossible load on a bicycle. Dad needed the car to work out of town, so Mom improvised. She’d hang grocery bags from the handlebars, tell me to climb into the baby seat, and then my younger…