National Epilepsy Month: March 26, Wear Purple Day
Anyone who knows me, knows purple is my power colour. I wear it all the time. Took me into my 40s to figure it out, about the same time, coincidentally, that I started having sporadic seizures.
Once every year or two. Usually brought on by a tad too much alcohol the night before, in tandem with sleep deprivation, hunger, dehydration and most important — stress.
In January 2023 I was diagnosed with epilepsy. I was 55. I remember sitting in the neurologists office, feeling rather hostile, to be frank, listing off my history of seizures. The first was 2000 when I had just moved into my first house (stress), right after a business trip to Japan (sleep deprived), dealing with a crisis at work (stress), and the day after a house warming party with a bit of wine (alcohol). After testing, one of the best neurologists in the country said my seizure was a result of sleep-deprivation, alcohol and stress. A one off. Until they weren’t.
The seizures continued, all connected with the slightest increase in intake of alcohol the night before. Let me be clear: I was an occasional drinker. Maybe 4 oz with dinner, a little more when out socially. Nothing in the extreme. All but one seizure, the last one I’ve had before diagnosis, had alcohol involved.
The last alcohol-induced seizure was in March 2021, during the pandemic. A wine and cheese fundraiser. End of semester stress (I’m a college professor). I had a seizure the next day while walking my dog. Fell flat on my face on the pavement and my dog saved my life. (Read this for details, not my denial that it was not epilespy because no doctor diagnosed it as such).
After that seizure, I stopped drinking alcohol. Not one drop. That was the seizure that scarred my face and scared me the most:
Then I had one in December 2022. End of semester stress.
In the neurologists office in early January 2023, I was asked how many seizures I’d had in my lifetime. I listed them off to the best of my memory. I got to about eight, maybe nine. “How many are we at?” she deadpanned. “I don’t know, haven’t you been counting?”
“You have epilepsy.”
But… I began. (I actually argued with her for a while). I’d been having sporadic seizures for 23 years. How could it take so long for a diagnosis? How could it happen so late in life? Why?
Apparently I am one in 100 Canadians who have epilepsy. Heck there’s even a hashtag: #Iam1in100.
And March, in Canada, is National Epilepsy Awareness Month and tomorrow, March 26 is Purple Day to raise awareness for this disease. It’s a national PR effort that asks everyone to wear purple, when the CN Tower will be lit up purple, and when people like me are encouraged to tell their epilepsy story.
This is mine. I’m now on daily meds. I get eight hours plus a sleep a night, I exercise daily, I have two dogs to help me manage stress, I drink eight plus glasses of water day and I know, at the end of March, when the semester is about to end and I wish all my PR students well in their Field Placement that I may need to take a break, or set some boundaries, or write my story.
Tomorrow, please wear purple.
