This week, I turned 45. It’s a number that feels both accurate and completely wrong at the same time. In my heart, I’m still the woman who loves electronic dance music and dreams of crossing the finish line at another 10K race. But neuromyelitis optica spectrum disorder (NMOSD) has…
Daily living
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…
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…
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…
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…
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…
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…
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…
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