“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…
The Beginner's Guide to Walking - a Column by Jennifer V.
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,…
Most nights, I can’t wait to go to bed. I’ll rush through my bedtime routine, but even though I’m beyond exhausted, I can’t seem to fall asleep. It secretly irks me to be the only one in my household still awake at night. Even my pug, Magnus, who normally barks…
Neuromyelitis optica (NMO) isn’t all bad. Hear me out. Sure, the needles, pain, and endless worry about permanent paralysis and vision loss are no fun, but there’s a silver lining if you know where to find it. At the start of every year, I think about all of the people…
I am one of the few lucky ones who really enjoy what they do for a living, but that’s probably because I’ve taken control of my destiny. I am constantly reinventing myself and building the career I want. This became even more important after I was diagnosed with neuromyelitis…
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