Epilepsy Talk

Bullied Because of Epilepsy…  | November 19, 2021

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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18 Comments »

  1. Reblogged this on Ken's Devotions.

    Like

    Comment by Kenneth — November 19, 2021 @ 1:10 PM

  2. Phylis, thanks for sharing. As you know, I have faced bullying from former bosses and former friends. When I worked for a legislator, I was called “an embarrassment to the office” for having a complex partial in a restaurant. Then here was the boss who would come from behind and punch my desk, inducing seizures.

    As a reporter now, I have dealt with sources who have said they would call me out “for having a mental disorder. Then there was the City Council candidate who asked if my boss had to type my articles for me in a slow, robotic voice.

    The only things I can do are to call out bad behavior and continue to shine.

    Liked by 1 person

    Comment by Mary Ellen Gambon — November 19, 2021 @ 1:24 PM

  3. And you do shine Mary Ellen, above the rest.

    Surpassing all tests to your efficiency and instead turning them into accomplishments for yourself and everybody in this community.

    Don’t let anybody tell you less. You are a star. And a force to be reckoned with.

    Like

    Comment by Phylis Feiner Johnson — November 19, 2021 @ 1:30 PM

  4. I have faced housing discrimination when I had a seizure alert service dog. After I had hit them over the head with the ADA regulations about this, then they switched to, “No we are not trying to keep you out because of the dog. This is a ‘safety’ issue. There are stairs. You could hurt yourself.”
    Most housing involves some stairs. The fake “concern for my welfare” was disgusting.

    Liked by 2 people

    Comment by paleobird — November 19, 2021 @ 1:53 PM

    • Didn’t they understand that your FEET were not the “issue”? Nice try. And total crap.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — November 19, 2021 @ 2:11 PM

      • Yep. You can’t remove all risk from a person’s life. Even in a one story living unit with no stairs you could still fall in the bath while having a seizure and kill yourself as could someone without epilepsy.
        They were just trying to find a way to make and end run around the ADA rules about service dogs.

        Liked by 2 people

        Comment by paleobird — November 19, 2021 @ 2:35 PM

  5. These stories you recount are tragic. The worst I’ve dealt with is being told I look like I’m drunk or on drugs (when I was having space out seizures). I can’t believe how people would physically abuse someone going through this.

    Liked by 1 person

    Comment by Hetty Eliot — November 19, 2021 @ 5:04 PM

  6. I don’t know if this is something you want to hear about this subject but I used to be taunted in grade school because of my seizures and my form of defense was using my strength to help the other kids develop a fear of being on the receiving end of pain if they didn’t show me any respect.

    Liked by 1 person

    Comment by Ed Lugge — November 19, 2021 @ 6:28 PM

  7. The abuse from the ARROGANT & IGNORANT so called people who are suppose to be friends & some family,, really are not so bad when you consider the TORTURE and the ABUSE done by the BIG PHARMA INDUSTRY & so called health care providers, which all trickles down into schools to teachers, principals & so called counselors to where their stupidity & wicked & evil ways, destroys any hope for teens to have a real chance at life after school because THEY ARE ARROGANT & RETARDED THEMSELVES in knowing how to be real people to a person who may not have all the brains with some subjects in school, but we have the COMMON SENSE, that they totally had & still have missing today in how you are to show mercy & grace to students & adults as well when after school days, people in the employment world have NO IDEA what good workers they do NOT HIRE, because of LIABILITY REASONS so they work with druggies & alcoholics & other mental cases they call employees. I have NO retirement and I do not need a retirement, where my mansion is being worked on now, that is if God has whatever it is he has planned for me if it is a mansion or whatever. Next week will mark 61 years since my 1st seizure. JANUARY 2022 will mark 61 years since taking my 1st drugs for epilepsy at 7 months old. You really think all these drugs have done NO BRAIN DAMAGES to my brain chemistry that SEIZURES 61 years later was NOT THEIR PLAN in 1961 or in 2021 today ??? I am to add a new AED, XCOPRI tonight with my VIMPAT. It is to start at 12.5 mgs to 25mgs in 28 days,, THEN A NEW prescription for MORE MGS the next month for 4 weeks for another NEW PRESCRIPTION of the same AED for 4 weeks. IF it does not have the bad side effects I was told it can have. What a life,, What number am I ? WHAT ?? I’m a person after 61 years ? Then WHY keep experimenting again & again on me after 61 years ?

    Liked by 1 person

    Comment by James D — November 19, 2021 @ 7:28 PM

  8. Never did I imagined myself I could end up in the torture chamber falling in the hands of predators, handcuffed to hospital bed while I was having grand mal seizures.
    The enlightening experience had only made me determined to challenge ANY abusive bully who take my seizures for weakness.
    It seems adversity makes for stronger person like steel tested by fire.
    Gerrie

    Liked by 2 people

    Comment by Gerrie — November 19, 2021 @ 10:42 PM

  9. Gerrie, you are stronger than steel. Stronger than almost anyone I know. Your resolve is to be envied. Your perseverance, admired.

    Like

    Comment by Phylis Feiner Johnson — November 20, 2021 @ 11:15 AM

    • Phylis, Thanks to your selfless devotion sacrificing your precious time, resources, energy, invaluable experience & deep understanding of Epilepsy on this forum, I have learned a whole lot about seizures from this forum more than from any other establishments I had been referred too.
      Thank you for enabling all of us to share our experience & learn from each other.
      I couldn’t have made it this far with out learning about seizures from all the members of this forum.
      Therefore, I’m grateful for ALL the informative & educational experience I’ve gained from all members of this forum.
      Keep up the great work. 👍!
      Gerrie

      Liked by 3 people

      Comment by Gerrie — November 20, 2021 @ 2:53 PM

  10. As they say: “We are family!”

    With admiration and respect,
    Phylis

    Like

    Comment by Phylis Feiner Johnson — November 20, 2021 @ 2:59 PM

  11. Here in the UK it’s called hate crime now, and we can take people to court, but that’s only after you’ve suffered, I should be a teacher, a manager, but emploers thought I was retarded, unable to hold a joband produce, just down right dangerous, dangerous I’m still having thrown at me, I loved the lockdown as people wern’t out and I didn’t have to be worrying about what would happen if I had a seizure. Before the lockdown I tried to get voluntary work in charity shops supposed to help the disabled but I got the same filth thrown at me. One place did take me in, I thought I’d been accepted until one day someone brought in those goggles that give you a virtual picture of another scene, I didn’t want to try it as I have vision problems, the manager said it was my epilepsy stopping me, he’s been praising my work suddenly started spitting out all those old myths and insults. I was shocked that that was really what he thought about me, collapsed sobbing and ran. I did complain to the charity’s headquarters but they didn’t care. We’re normal people who take a few pills!!

    Liked by 1 person

    Comment by Gail Barry — November 21, 2021 @ 3:26 AM

  12. No pills…no promises…just out right insults and hurt.

    I can’t imagination the humiliation and despair. A job well done, thrown to the wind over a pair of goggles.

    It’s sad, it’s sick. It’s unforgivable that you didn’t have your chance at life. I’m so sorry.

    Like

    Comment by Phylis Feiner Johnson — November 21, 2021 @ 11:06 AM

  13. I guess the sad thing about being bullied is the factual definition followed by these real-world, heartbreaking stories. The bullies I’ve encountered perceive themselves as having power that they abuse over us who they perceive as being weaker. We experienced this kind of treatment in housing, employment, even healthcare.
    I’ve experienced this in volunteer opportunities in – of all places – the church. For example, a good friend of mine would only give my name out to others if “I had my ‘little problem’ resolved.” Another person said that I could not volunteer because people deserved the same kind quality from me, even it was from a disabled priest. Ouch! There was nothing I could do.
    It has been the Epilepsy Foundation in Southeast Tennessee that has treated me with dignity.

    Liked by 1 person

    Comment by George Choyce — November 22, 2021 @ 12:47 PM

  14. So much for the “Good Christian”. You would think of all places, you would find sanctuary there. It’s heartbreaking. And cruel.

    Like

    Comment by Phylis Feiner Johnson — November 22, 2021 @ 12:52 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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