Mary
When I was about six weeks old, I had my first seizure.
And in 1947 and 48, there wasn’t any information about that kind of thing. I mean, we’re talking about a time long before the Internet. I was at least three or four years old before it was even diagnosed as epilepsy with no known cause or cure, and even treatment was hit and miss.
At that time my parents were unaware of anyone in the family with epilepsy. They were later able to find evidence of it in several branches of my father’s family, although it was kept hidden until well into my adult life.
I was kept back two years in school. I went when I was six, but my seizures weren’t controlled yet and I had a seizure at school. It disrupted the classroom so much that they asked my parents to keep me home. I spent a lot of time in and out of Sick Children’s Hospital to adjust medications to control my seizures. That was accomplished around 1955 and I was able to enter grade one, two months before my 8th birthday.
When I was growing up, I was never allowed to accelerate in school because they didn’t know what prompted the seizures. So, I never did anything very physically demanding or stressful and I was encouraged not to push myself in any way. It was a big deal.
There was a stigma to being sick. I wasn’t ashamed of being sick, but there was a stigma attached to it. When I was about 12, I went to the school’s copy of the Encyclopedia Britannica, to show somebody the definition of epilepsy. It said, “possessed of the devil”. My parents fought the school and had that encyclopedia removed. However, there were still kids that I wasn’t allowed to play with.
There was a stigma attached to being two years behind in school as well. And I didn’t cope very well in high school where all the teachers thought, because I was older than everybody else, I must have failed a grade or their subject. Although I was seizure-free without medication at age 14, as a teenager and as a young adult, I didn’t feel confident that I had the intellectual capacity to finish high school and go to university.
I did later get my high school equivalency with a standing in the top 3% and went on to university to get an undergraduate degree with a 3.5 out of 4 grade point average. I have had a full life.
My father, Ron Burrows, was one of the founding members of Epilepsy Toronto. I think he would be pleased to see it in the offices it’s in today. And I think the outreach and counselling and everything that’s going on here would have been right up his alley.
*stories have been condensed and edited