Epilepsy Talk

Why Won’t You Play With Me? | February 19, 2021

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 put something soft under their head, turn them onto their side, move some furniture away and get rid of all those gawkers.

Then stay with the person and try to make them 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, 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


9 Comments »

  1. Nice writing, straightforward and deals with reality. (I even like the ending:)

    Liked by 1 person

    Comment by philamisan — February 19, 2021 @ 10:11 AM

  2. Yes, I always like happy endings. And this happy ending is true.

    Like

    Comment by Phylis Feiner Johnson — February 19, 2021 @ 10:15 AM

  3. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — February 19, 2021 @ 10:53 AM

  4. great article- too bad people had no sense years ago to share their knowledge with others;;the world would have been so different for those with epilepsy

    Liked by 1 person

    Comment by Karen — February 19, 2021 @ 12:52 PM

  5. Yes. The social stigma was staggering.

    Like

    Comment by Phylis Feiner Johnson — February 19, 2021 @ 1:13 PM

  6. The problem is that is just SCHOOL YEARS, as the stigma continues after age 18, 21, 30, 40 & even at 60. But when you are 1 of many, NOBODY even twins are alike, who have seizures, & most people are aware what can happen to you, some people will realize what you deal with & maybe feel humbled to you, & greatfull that it is not them going through what they see you going through when a GRAND MAL strikes you, like what happened to me 3 weeks ago at the bowling alley. After 2 weeks it was all forgotten about, as I did go back the last 2 weeks to bowl, never letting a seizure or epilepsy dictate to me what I do with my social life, what little it is. It is now 3 seizures I have had there in 30 years, and I can only say at least it did not happen later, when I could had been driving. 1st time, my dad & uncle came to get me, as they sent me to the hospital. 2nd time after that 1st time I said NO WAY EVER do i get sent to the hospital, as it was 3 weeks ago, as both those 2 times friends from the lanes seen to it I got home & my vehicle got home as well. Hospital staffs would never do that, as they would maybe report you to the state DMV & then your freedom is stripped forever & MORE STRESS & SEIZURES are likely in your future. The EPILEPSY STIGMA is there when you want employment, & it never goes away IF you want any kind of self-employed opportunity, that the public is so important in your daily activities with others, and never try to be someone who claims to know a little bit about ANYTHING when they know you have epilepsy & can have GRAND MAL seizures. Our own medical departments from FDA, CDC & NIH & others in all 50 states has US in a class of our own, with their names & labels they USE to give is that STIGMA that we can’t help to protect ourselves from. from the people who labels us, because of seizures we have. Still I know 1 thing and the only thing that matters. I have the approval of God who accepts me JUST AS I AM. If people can not deal with that, then I do not care. They will never have the rules to get me into heaven, but GOD is all I need to be accepted into his world one day. That day can be today or tomorrow, one never knows. So I am listening for the trumpet sound, as should everyone else clean out the ears.

    Liked by 1 person

    Comment by James D — February 19, 2021 @ 2:07 PM

  7. I know this isn’t the point, but please James, don’t drive. You’re putting yourself — and others — in grave danger.

    Like

    Comment by Phylis Feiner Johnson — February 19, 2021 @ 2:22 PM

  8. Beautiful, Phylis! Thank you so much! Reminds me of NYC.

    Liked by 1 person

    Comment by Mary Ellen Gambon — February 20, 2021 @ 11:40 AM

  9. A tough memory to forget.

    Like

    Comment by Phylis Feiner Johnson — February 20, 2021 @ 11:42 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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