“I run an HR consulting firm, teach part-time at a post-secondary institution, and have a nine-year-old daughter. I have to stay busy, it’s the way my brain operates — but sadly, my body doesn’t always cooperate.
I have neuromyelitis optica spectrum disorder (NMOSD), a chronic disorder of the brain and spinal cord. In September of 2009, I had my first major attack, and was paralyzed from the bra line down. It just happened out of the blue. My fiancé drove me to the ER, and I underwent a weird whirlwind 24 hours of endless tests and a lot of people poking at me. It wasn’t until January of 2010 when I had an optic neuritis attack and suddenly lost the vision in my left eye that I was finally diagnosed.
I was told that I was never going to walk again, but I wasn’t OK with that answer. I spent a fortune taking taxis to physiotherapy to regain movement. I recovered from the paralysis and got my vision back, although I still have some residual numbness and ongoing pain.
The initial response from my doctors when my husband and I told them we wanted to have kids was ‘Absolutely not,’ but I wasn’t OK with that answer either. We really wanted to try. I did some research and begged and pleaded with my doctors, and finally we were given a cautious green light.
We worked with Mount Sinai Hospital’s high-risk OBGYN team and did IVF. There was nothing romantic about it. It involved teams of doctors, endless tests every morning, injecting myself with hormones, and feeling like a science experiment. But we got pregnant. To the best of my knowledge, I’m the first NMOSD patient in Canada to have a successful pregnancy post-diagnosis.
My daughter is determined, and she’s very mature for her age. Having a parent who is sometimes down for the count makes her more empathetic toward other people.
I’m never more proud than when I’m watching her accomplish something, even if it’s something ridiculous like graduating from kindergarten. These moments are a lot more emotional for me because I know what it took to get there. I make sure to live in the present and to honour each moment, because I don’t know what tomorrow will bring.”
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