Epilepsy Talk

Why Won’t You Play With Me? | August 20, 2019

Once upon a time there was this girl named Ellen.

She had epilepsy and she hated the world.

So the world hated her back.

She had no friends and didn’t speak to anybody.

In turn, nobody spoke to her. Except the occasional bully.

One time, she got knocked over in the school yard and her glasses broke.

She didn’t tell on the boy, because no one would care anyway.

Then one day, a new girl came to school named Linda.

She was the same age and was in the same class as Ellen.

And she wondered why Ellen never spoke to her.

A few days later, Ellen passed out at lunch and seemed to go stiff all over.

And then her right arm and leg started moving, which was sort of scary.

Everybody looked in another direction. They whispered and that was it.

It was almost as if Ellen had leprosy and it was catching.

Linda was scared, too. But she didn’t know what to do.

She asked the lunch monitors and they didn’t know either.

No one in charge seemed to know what to do.

So Linda sat by Ellen and put her cardigan under Ellen’s head, because she was shaking so badly.

A few minutes later, Ellen woke up, looking a little confused.

Susan asked Ellen what had just happened and Ellen sighed:

“I just had a seizure.”

“A WHAT?” blurted out Linda.

And then Ellen explained. About epilepsy and what happened when she had a seizure.

How often she had them and how awful everybody acted.

Like she was some kind of freak.

Linda couldn’t understand it. Why didn’t anyone come and help Ellen?

Then she put one and one together and realized everybody was just as scared as her.

The difference was, they had seen it before and just thought Ellen was very, very weird.

That’s all they knew. And that’s all they wanted to know.

By now, Linda had built up a good head of steam.

Here was this girl who had this horrible (embarrassing) illness and no one seem to care.

And they sure didn’t go out of their way to find out how to help her.

It was the just the opposite. They avoided her.

It wasn’t fair.

Linda went to the nurse’s office to find out more about epilepsy, but the nurse was kind of vague.

She went home and her mother admitted that she didn’t know much either.

So Linda sat down and looked it up on the internet.

Boy, it was even more awful than it seemed.

There were all different kinds of epilepsy and people did different things.

But there was one thing in common.

They all seemed to need the same kind of help — or first aid.

Ok. So what’s the big deal?

Just move some furniture away and all those gawkers.

Then stay with the person and try to make her comfortable.

Nothing much else. Unless it went on for a long time.

Anyway, she and Ellen started to hang out.

And then a few other girls got curious about the new girl and the girl who never spoke.

So, they began having lunch at their table.

Linda told her mother all this and her mother said: “Why don’t you get to know Ellen better?

Invite her over to dinner.”

Ellen was more than surprised.

I mean no one had even wanted to sit down next to her at lunch before.

Now she was being invited over to someone’s house for dinner!

It was almost as if she was getting popular. (Relatively speaking.)

Ellen’s mom thought it was a super idea that Ellen go over there for dinner.

She just called Linda’s mom to give her a heads-up, in case Ellen had a seizure.

Ellen continued coming over and suddenly other girls invited her over, too.

She explained about her seizures (no, they weren’t called “fits”) and what to do.

She sure didn’t want her mother calling around as if she was a baby and couldn’t talk for herself.

But she did go to the nurse and explained what to do in case she had a seizure.

Then she wondered why the nurse didn’t even know about epilepsy.

And she sighed, remembering how it was. No one seemed to care.

Or they were so freaked out, they didn’t know what to do. Even the nurse.

Meanwhile, Ellen’s mother had a small brainstorm.

How about if she got some first aid information and passed it out to the nurse, teachers, and even the principal, to explain about Ellen’s seizures and what to do?

Well that worked ok. Nobody seemed so scared of Ellen any more.

She had friends, was invited to meet other girls and was just about over-joyed.

But her mother wasn’t all that happy.

Why hadn’t anyone done anything with the information she had given them?

It was like a secret handshake or something.

So she suggested that she and Ellen give a little presentation to her class.

Ellen was reluctant, but at least her mother would be there.

The day came and Ellen was so nervous, she could barely take it.

Well, you can guess what happened next.

Ellen and her mom got to school, gave all the kids in the classroom some hand-outs and started to explain basically what epilepsy was.

And then the worst thing you can imagine happened.

Ellen had a seizure. Right in front of the class. She was mortified.

Her mother was cool as a cucumber and explained to the kids how she was taking away anything that Ellen might bump into or anything that could hurt her.

She put something soft under her head, and when Ellen came out of her seizure, her mom told Ellen where she was (at which point Ellen wanted to dig a hole to China) asked her how she felt and explained what had just happened to the rest of the class.

Wow, thought one kid. She didn’t even die. She seemed a little dazed but that was all.

News about Ellen and the seizure and the presentation spread like wildfire.

Especially at lunch. People were real curious.

Why didn’t they have to put anything in Ellen’s mouth? Didn’t people say you should?

Could they catch it from her, if they hung around for too long?

She explained that she was just like them, but there were some things she couldn’t do.

She couldn’t swim. And it didn’t look likely that she would drive.

But she hung out at the mall, went other places and was asked out to the movies.

She was a real person. And she was special.

Everybody came to know about her. The principal even had an assembly.

And Ellen was one very happy 10th grader.

The end. (Well, sort of.)

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Resources:
Valerie McGee
Phylis Feiner Johnson


14 Comments »

  1. So relatable. I was like that too in school, but I usually wrote or talked about it more with my teachers. I gave a few speeches in classes about it, but that mostly happened in high school and college. The Epilepsy Foundation Heart Of Wisconsin even noticed me doing it while still in college, and at the time we still had a local branch, so she made me part of the Advisory Board Committee and had me be trained as a H.O.P.E Mentor because of my speaking experience. I haven’t really been able to use my material much lately though.

    Liked by 1 person

    Comment by trekkie80sgirl — August 20, 2019 @ 11:50 AM

    • Sad that your advocacy efforts do not had a platform now.

      But kudos to all you accomplished.

      It takes a courageous person to tun pain into positivity.

      I admire you.

      Like

      Comment by Phylis Feiner Johnson — August 20, 2019 @ 11:57 AM

  2. I feel hurt and alone a lot with this. Mentally I have bad intentions of myself. I had an seizure while watching a damn movie. When my girl got me out of it I didn’t know where or who I was. It sucked. Couldn’t remember what I was watching. I was just upset. It took hours for my memory to start coming back. It just leaves me depressed.

    Liked by 1 person

    Comment by jjayp75 — August 20, 2019 @ 12:19 PM

    • I can see why.

      You can’t always predict when or where a seizure will happen.

      No less what the aftermath will be for you.

      Like

      Comment by Phylis Feiner Johnson — August 20, 2019 @ 12:23 PM

  3. Very good story with a lesson. Who was ‘Susan’ in the story?

    —————————————–

    Like

    Comment by karen629@charter.net — August 20, 2019 @ 2:03 PM

  4. I had people that did that to me too cause they acted confused .But when I was okay one day I explained to people what to do next time I had one because my mom used to have them and that is another reason why I knew what to do and as long as I didn’t have one. I explained how to handle me one I do have one. If she still has them bad check and see if she quitifies for maybe a Vagus Nerve Stimulator ,VNS it is used to help control seizures if meds won’t do the work cause I had to get one when I was 20. I still have it and have a few small seizures once in a few months and still on meds too.

    Liked by 1 person

    Comment by Corina Perry — August 20, 2019 @ 4:53 PM

  5. I can relate to how Ellen was treated because I was also bullied and no one wanted anything to do with me and with the stigma people are ignorant and treat you like a freak so I won’t have anything to do with them because we’re all equal and have issues.People don’t know how strong we are like 🐘

    Liked by 1 person

    Comment by Kathleen Quain — August 21, 2019 @ 10:14 AM

  6. And how strong we HAVE to be.

    We HAVE to be our advocates. If not us, then who?

    Like

    Comment by Phylis Feiner Johnson — August 21, 2019 @ 10:34 AM

  7. Thanks to Linda, the inspiring proactive new student coming to Ellen’s rescue, making a whole lot of difference for Ellen & the whole school to learn valuable lessons from Ellen’s struggle with seizures.
    It always seems the case, a hero/heroines crossing & challenging the misconceptions, fear, stigma & barriers in society make this world a better place to live.
    I’ve been in Ellen’s shoes & I can attest to that I’ve been blessed & benefited from few kind hearts like Linda’s coming to my rescue, when I needed it the most.
    Ellen is fortunate to have a playmate opening a whole new world to live in, discover & treasure.
    Thank you for the heartwarming story, reminding us there’re unsung heroes among us who made precious difference in our lives.
    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — August 21, 2019 @ 10:36 AM

    • Although I was an Ellen, I was lucky to find a few caring Lindas, who became my best (and only) friends.

      But not before I was forced to sift through much ignorance, bulling, and just plain cruelty.

      Like

      Comment by Phylis Feiner Johnson — August 21, 2019 @ 10:49 AM

  8. 💜 It does take time for people to realize that those of us with epilepsy are just the same, but different as others. It is tough making friends and them understanding what a seizure is, what has to be done to help when one happens. I can personally say it is tough making friends and finding out who your true friends are and aren’t. The seizures happen and it is tough, people DO NOT have them looking for attention. They have got no idea how embarrassing you get after!! True friends will sit, or stand with you until you are feeling back to yourself. They will get immediate help if anything should happen. Just give people a chance!! Think those who don’t give us a chance or make the ignorant remarks, or even fool are the handicapped ones, not us!! Want to put them in our shoes and make them see what it is like!! God bless all of us “brothers and sisters” with the seizure disorders!!!

    Liked by 1 person

    Comment by Nicole Koloski — August 22, 2019 @ 12:56 AM

  9. I think, in their heart of hearts, people do want to help.

    But ignorance and fear, make them run.

    It’s really so easy to help someone through a seizure.

    But the stigma is so difficult.

    Those of us who have true friends, who will stand by us out of love and concern, are the blessed ones.

    As for the “bystanders,” they remain voyeurs.

    Like

    Comment by Phylis Feiner Johnson — August 22, 2019 @ 10:38 AM


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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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