The Beginner's Guide to Walking — Jennifer V.

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…

A lot of people know who I am. They know my name and recognize my face. They might describe me as “busy,” “organized,” or “the one who always has a plan.” I’ve built a life that, from the outside, looks full of work, family, friends, and commitments. For a long…

Ever since neuromyelitis optica spectrum disorder (NMOSD) introduced pain into my life, I’ve been trying to exorcise it from my body. I’ve become a formidable opponent to pain, but parts of it still frighten me. The spasms were the worst. They once felt like someone was pouring boiling water…

Ah, summer, the season of sunshine, sandy toes, and an overwhelming urge to leave our responsibilities — and occasionally common sense — behind. For most families, mine included, summer is a time to finally take a much-needed break. But as someone living with neuromyelitis optica spectrum disorder (NMOSD), vacation…

I hate complaining. Truly. Deep in my soul, I believe in powering through, staying positive, and not becoming “that person” whose personality is just one long sigh. Victim mentality? Not my brand. I like to think I’m more of a “grit, grace, and decent hair day” kind of person. But…

I’ve never been great at fitting neatly into so-called boxes, especially spiritual ones. I grew up exposed to many religions, from Jehovah’s Witnesses to Seventh-day Adventists. I even begged my mom to send me to Catholic school for a period during elementary school, and dragged my younger brother along. In…

Having neuromyelitis optica spectrum disorder (NMOSD) means Mother’s Day hits me a little differently. It’s not just a holiday; it’s a milestone, a victory lap, and sometimes a quiet exhale of relief that I’ve made it to another year of being “Mom.” This year feels especially meaningful, because my…

At 44, I’ve reached the age where life starts handing out plot twists no one asked for. Parents get sick. Friends, the same ones I once stayed out too late with, now text me about big health issues. And every so often, someone disappears entirely, leaving a silence that feels…

Everyone has embarrassing moments from time to time, but a neuromyelitis optica spectrum disorder (NMOSD) embarrassing moment is on another level. One of these happened to me 16 years ago, during my first transverse myelitis attack, when I could no longer feel my bladder. You’d think that would…

If someone had told me years ago that my most consistent daily workout would involve tapping a screen like a caffeinated woodpecker, I would’ve laughed. Yet here I am, a proud neuromyelitis optica spectrum disorder (NMOSD) patient of 16 years whose newest addiction is playing mobile games. I play…

What does it take to be a rare disease patient? An immense amount of time and patience. Buckets of both, preferably refillable. Even when you think things have settled and you’re managing your health well, something pops up. After many years with neuromyelitis optica spectrum disorder (NMOSD), I’ve come…