Epilepsy Talk
Bullied because of epilepsy… | October 5, 2024
Like lions, they smell the difference…
Like hawks, they sweep down on you…
And like hyenas, they laugh and eat your heart out.
I guess Robert Drucker never heard the saying “don’t hit a man when he’s down.”
Because even though I wasn’t a man, I was surely down on the ground with a seizure. Lend me a hand to get up?
Hell no.
He kicked me in the face and broke my nose.
But no pity parties here.
I’m sure you’re not new to the bullying game.
Where ignorance rules and mean is cool. Just ask:
Paul, taunted as the “seizure boy” throughout school…
Gemma, gang raped by three boys as a teen…
Troy, whose (former) best friend beat him up…
Sarah, mugged by a man pretending to be her date while she was seizing…
Olivia, whose classmates called her “retard” and dragged her backpack through mud…
Jonathan’s teacher didn’t believe he was having a seizure and pulled the chair from under him, just to see if it was “real”…
Chris’ parents threatened him with a vasectomy, if he dared to have another child…
Tim was repeatedly beat by the police, who accused him of being high on cocaine…
Corinne committed suicide at 13, after her (former) best friends taunted her for two years and finally told her “You should just die”…
And at a State Hospital in Michigan, when Mike had a seizure, they would lock him in the seclusion room.
If he had another seizure there, a nurse or attendant would come in and slap him or literally “belt him”, where nobody could see…
I’m sure you have your own story too.
Will you tell it or stay silent, as so many victims do?
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Epilepsy Talk 
I unfortunately have many stories like this. I was called “an embarrassment to the office” for having a temporal lobe seizure in front of a state senator. At another job, my boss would sneak up behind my chair and scream to provoke a seizure. I have been called the “R word.” For years I had to carry a note in my wallet from my epileptologist explaining that I have a high IQ despite appearing drunk during a seizure. I was also spoken to in a slow, robotic monotone by a Boston City Council candidate during an interview I was conducting for a local newspaper.
Thank you, Phylis Feiner Johnson, for sharing this story about bullying and prompting me to share some of mine. Together we will end the stigma. 💜
Also…
Thanks so much, Phylis! Your encourage means so much to me, espcially now. If you need more stories, I have plenty. Like how I was nearly evicted for having a seizure in my apartment building elevator and losing bowel and bladder control. I had to get a doctor’s note. The manager said that I must have been conscious because I pushed all the elevator buttons.
This is the same building where I was sexually assaulted. The man who did it and the custodian involved (who still works and lives there) received no punishment whatsoever.
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Comment by Phylis Feiner Johnson — October 5, 2024 @ 6:26 PM
Mary Ellen, it’s a testament to your strength and fortitude that you got through such horrendous episodes and survived emotionally to tell the stories. Only someone as big as you could carry such bravery and spirit.
I wish you didn’t have to be, but Mary Ellen, you are an inspiration to all of us who have been mistreated, bullied and shamed in the name of epilepsy.
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Comment by Phylis Feiner Johnson — October 5, 2024 @ 6:33 PM
I know this is giving away my age but I felt like Baby Huey. I was a little kid mentally but I was bigger than everyone else. When the other kids saw my seizure activity, they didn’t want me in their “group” and some wanted to take a cheap shot at me. The problem for them was they eventually looked up to me…as they laid on the ground. I never started a fight but I ended them on a regular basis.
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Comment by Ed Lugge — October 6, 2024 @ 9:18 AM
Ending a fight is sure better than starting one. (Might makes right?)
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Comment by Phylis Feiner Johnson — October 6, 2024 @ 10:33 AM
I was bullied by my entire family. Have had a brain operation and do not have any more seizures but have gone no contact with immediate family . Leave the past behind and on with a future.
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Comment by Jill Whiting — October 9, 2024 @ 2:19 PM
Well Jill, difficult as it may have been, you know you made the right choice, unfortunate though it may be.
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Comment by Phylis Feiner Johnson — October 9, 2024 @ 3:16 PM