In 1976, I had my first tonic-clonic seizure. I was in my high school hallway between classes (read: spectators all around), having felt all morning as though I was disconnected, somehow reading everyone’s minds. What an aura.
This story is part of the Epilepsy Blog Relay™.
The next thing I knew I was in the Concord, NH, hospital, while they tried to determine if I was “an epileptic.” And so began my feeling of being the other, of being weird, and of humiliation. My cognitive abilities just weren’t what they used to be. Was it the epilepsy or the phenobarbital that, at the time, was the go-to medicine for teens? Regardless, it was me, and I was less of a person to my way of thinking.
Fairly soon, I moved onto more effective meds, which allowed me control. My self-esteem stayed damaged though, and like so many, I hid my condition. I only dealt with it when I would forget to take pills and have a full-out grand mall seizure – usually with people who didn’t expect it because, that’s right, I hadn’t told them about my epilepsy.
Hiding in the shadows
What a waste. Not only was I in a dangerous part of the shadows, I wasn’t handling the root of my problem, the stigma. Furthermore I was missing out on an opportunity to help many others’ find their way out of their uneasiness about epilepsy by giving them the information they need to view it realistically.
As the years went on, I had seizures every few years, but only when I forgot to take my meds. Because I was covering up my epilepsy, I hadn’t told people around me at work or even good friends that I have epilepsy. It was a shock to all. And I owe them apologies for having put them through my tonic-clonic episodes without knowing how to respond.
Shedding light on epilepsy
Growing weary of my self-diminishing secrecy, I decided to change 38 years later. I looked for opportunities to tell others with whom I have a positive relationship that I have epilepsy, how common a condition it is on a wide spectrum, and how to handle someone having a seizure. I found openings when asked what my medical bracelet was for and waited for other appropriate moments to begin spreading the word. It got easier and easier, and my hypothesis is that the stigma often lies in others’ fears began to bear out. I could see the body language unclenching as those I spoke to learned facts that put them at ease with the possibility of being faced with a seizure and not knowing what to do.
Courage to carry on
Granted, these may be especially open-minded people, but it did bolster my courage to continue on. I’ve found that almost all those I’ve told haven’t let me down.
Don’t miss tomorrow’s story in the Epilepsy Blog Relay™.
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