It didn’t start as a windy day. The sun beaming down on my face felt oh so good. Spending time on the water with my family was one of my favorite activities. At first, I thought Dad’s 28-foot boat purchase felt excessive, but when we piled our entire family onto…
“Can you walk down the hall for me, please?” My specialist, with a stern look on her face, waits patiently. “And back again toward me now.” It feels so ridiculous that, as a 40-year-old woman, I’m being asked to do this. I steady myself and walk down the hallway. I…
I never imagined that a nurse would slap me across my face, but it happened. The slap wasn’t hard — it was just enough to jolt me back to reality, and I was grateful the nurse had done it. About 10 years ago, I was waiting for my cesarean section…
“Ladies and gentlemen, please welcome to the MRI, all the way from the changing room, the one and only …” I’ve sauntered into the room and grabbed the finger heart rate monitor, only to turn it into a makeshift microphone. The nurse looks at me, clearly unamused. I know…
We cannot separate science from life. Trust me, I’ve tried. Like most young people, I once thought of myself as invincible. So I was absolutely stunned when I was diagnosed with neuromyelitis optica (NMO) at the age of 24. With the diagnosis, my world came crumbling down. Yet while…
I have never met Sumaira Ahmed in person, but her energy and passion radiate through computer screens and phone calls. It’s what convinced many of us to follow her charge and become ambassadors for her nonprofit organization, The Sumaira Foundation for NMO, or TSF for short. As…
“Pain is inevitable, suffering is optional.” — Popular proverb I once slipped on black ice at the end of our street. My handbag, its contents, and my cellphone flew just outside of arm’s reach. I could see our home while I lay on the cold and dirty city sidewalk. Maybe…
The daily grind of ingesting pills for my neuromyelitis optica spectrum disorder can be very disheartening. There is medication for my nerve pain, to combat the fatigue, to manage the overall pain, to help me sleep. There are even pills to offset the heartburn that happens because of all the…
For the first 10 years after I was diagnosed with neuromyelitis optica (NMO), I chose to keep my condition private because I worried about how others might perceive me. But over the past two years of the pandemic, I’ve made the conscious decision to own my truth. I’ve been…
Feeling misunderstood is one of the biggest challenges I face with neuromyelitis optica (NMO). This week, we took our daughter sledding with a couple of friends. Sledding is a Canadian rite of passage, though I’ll admit it feels dangerous most of the time. Our brave 9-year-old, prepared with a helmet,…
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