November is National Epilepsy Awareness Month. I wrote my column this week about the staggering difference in funding between epilepsy and breast cancer. A similar number of people suffer from both each year (though more die from epilepsy), yet on average $215.25 is spent on research per breast cancer patient (both current and survivor) while $76.50 is spent per person with epilepsy.
One in 26 people - that’s one person per average K-12 classroom - will develop epilepsy in their lifetime. More than 2 million people in the US and 65 million people worldwide have epilepsy and that number will continue to grow as traumatic brain injuries from sports and the wars in Iraq and Afghanistan become more common.
What follows is my personal story of how I was diagnosed and have lived with epilepsy.
My story with epilepsy began when I had a seizure in front of Mrs. McGuffey’s talented and gifted class at Flenniken Elementary School in South Knoxville. I was eight years old and, it will shock no one who knows me, I was in the middle of being sassy to my friend Jerome when my first tonic-clonic hit me like a freight train.
It took about 20 years to remember that much.
I awoke in the nurse’s room - a bleak white room with a creaky metal institutional-type twin size bed - with Mrs. McGuffey by my side.
She was always put together, that lady. Not one hair was out of place in her dark brown June Cleaver hairstyle and her hands were calmly clasped in the navy blue lap of her dress.
“What happened?” I asked.
“You fell,” she answered. “We’re just going to wait here until your mother arrives.”
I learned much later that she was just as afraid as the rest of us. All she knew is that one of her students had gone into convulsions and didn’t regain consciousness for several minutes. She used everything in her power to make sure I wouldn’t close my eyes again. Not until my mother got there.
“Let’s play a game.”
We spelled Supercalifragilisticexpialidocious backwards and forwards. (I was pretty smart.) She told me riddles.
I don’t remember mom picking me up. I don’t remember those first doctor visits. I just remember Mrs. McGuffey calmly keeping me awake.
After we learned that I didn’t have a brain tumor, that it was, in fact, epilepsy and I wasn’t going to die, my mother set about finding information.
There were a couple of pamphlets at the neurologist’s office. There was an entry in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and a lot of other archaic books that still referred to epilepsy as a mental disorder. We lived in the dark.
When I went back to school and we tried to explain to the kids in class (and, by extension, the parents) what was “wrong” with me, there wasn’t a whole lot of positive information to back us up.
My second grade teacher, Mrs. Mapes, received letters from parents asking that their child not sit near me in class, at lunch or play with me at recess. They didn’t want their child to “catch” what I had.
It was a lonely year. Mrs. Mapes was my best friend.
Thankfully, memory is shorter than summer and I never had another seizure in school. By the third grade, no one remembered my little “episode.”
Fast forward to my mid-20s. I’m married and eager to start a family. Epilepsy has been a footnote in my life for several years. I rarely have seizures - maybe one every 2-3 years - and it often isn’t even on my radar enough to remember my meds.
Then I get pregnant.
My doctor warns me that if I have a seizure, my baby could lose oxygen and die or become injured during the convulsions and die. I have to take my meds religiously. However, my meds could cause horrible birth defects and it’s too late to switch to another medication with less chance of birth defects. I’m on a course.
I do this twice and both of my children are blessedly perfect. But I watch them every day.
I watch to see if their eyes glaze over and they go unresponsive. If they wake up with sore bodies I ask to see their tongues. Did they chew on them? Did they seize? Did I pass it along to them?
They are 12 and 14 now and appear to be fine.
I’ve tried to hide from my disorder all my life. That first experience in grade school taught me to keep it to myself.
It has taken over 30 years to realize that there may be another 8-year-old out there who needs support. Maybe they need to know there’s someone else who has gone through what they’re going through.
For our nation and our government to become aware of the dire need for research funding, people like me need to speak out. We need to tell our stories.
Find more information and interesting statistics at the following sources:
View more stories at epilepsy.com
More information: Epilepsy Foundation of America
Local information: Epilepsy Foundation of East Tennessee
Statistics: 1 in 26
Epilepsy Therapy Project: Story days
A Knoxville couple moved to Colorado to seek help for their epileptic daughter through the use of a special type of medical marijuana. Read their story - and others - at the Salt Lake Tribune.