Epilepsy Talk

Why Won’t You Play With Me? | March 2, 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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Valerie McGee
Phylis Feiner Johnson


22 Comments »

  1. Praises to the Lord and to the people who finally learned what Ellen was facing, and then they treated her like a normal human being- (as they should have been doing all along.)

    I walked in those ‘shoes’ when I was in school; could never hit the ball with the bat; couldn’t catch the ball due to poor coordination; hence, always the last one chosen to be on a team, last runner to finish in every race, etc. I don’t rightly know if the teachers even had any knowledge about it back then (over 60 years ago, let alone some still don’t.know much) The description of how people treated her as if she had leprosy- I experienced that too.

    I noticed a tremendous change at the high school reunions- people were now real adults and much friendlier than in years past- plus more educated on matters.

    Today’s education system needs to cut out the usage of computers, smart phones etc. and require students to read and experience happenings. Have a mandatory course on Epilepsy and make people learn without the help of something else to look up the answers— a situation like this needs to be experienced by all people to enable them to know how to handle the situation.

    Liked by 2 people

    Comment by Karen — March 3, 2019 @ 12:27 AM

    • Not only do I agree with you, but the same thing happened to me.

      Except in high school, kids were even more cruel.

      People literally walked OVER me when I was seizing in between classes on the hallway floor.

      No, it wasn’t until I was in my 20’s that I met real grown-ups who could deal with me and the reality of my seizures.

      Like

      Comment by Phylis Feiner Johnson — March 3, 2019 @ 10:31 AM

  2. What a lovely story! I developed epilepsy at the age of 30 as a result of brain surgery for a serious brain abscess. This means that although I learned how to hide my condition while continung my career I actually have no first hand experience in dealing with epilepsy as a child and have never feally thought about their challenges . It must be frightening and realy limit one’s opportunities unless the child has strong supportive parents, friends, a good health care plan and caring doctors. I would hope, wrongly perhaps, that schools discuss health issues such as epilepsy, diabetese, obesity, addiction and so on. Education Is supposed to prepare you for the realities of life isn’t it?

    Liked by 1 person

    Comment by Michael — March 3, 2019 @ 1:32 AM

    • Yes, education seems to cover many conditions, but sadly not epilepsy.

      My parents treated me like a pariah, like I had leprosy, so how could I expect anyone else to treat me differently?

      However, I did succeed despite the odds, graduating Magna Cum Laude from college and marrying a wonderful man who loved me as I am.

      (I even had a flaming seizure on our first date!)

      Like

      Comment by Phylis Feiner Johnson — March 3, 2019 @ 10:35 AM

  3. That would never have happened when in any grade or high school back in the 60’s & 70’s, at least where i went. It was suggested that I went into a special type of SE school, as I thankfully had 2 H S teachers who told guidance counselors & the principal that I did not belong in any SE classes or a SE school. Amazing that Ellen was not told she needed to be at a SE school or class, especially how today there is no dodge ball or much activity on a playground, Schools are more like going to a learning institution, where you act & think like the rest of the world, & you have no free will to think for yourself or talk or act in any favor as how God would teach you in his ways. I will say that God was always with me in my school years, as I never had 1 GRAND MAL in 12 years of the hell I survived because not many days then were there any joy, when the schools had to know it all, against MY will for them to know anything. My parents were too busy working yet they knew that a school nurse of anyone else would not know as much about my condition as I knew, So after 9th grade I carried my drugs on me, not where a nurses office was closed 4 out of 5 days a week, when i was to take my AED’s. I had no problem doing that knowing I was getting my drugs when I knew I was to take them. Amazed me then how EDUCATED people always had NO common sense. After 41 years nothing has changed much except more rules in schools and the restrictions & rules of vaccines & warping of innocent kids minds. Seizures have been triggered by those vaccine shots & flu shots too. I blame the vaccines for the reason WHY I still have seizures after 58 years. Look at ALL past & present of the evil & the wicked in the world. Over 90% of them finished school & college & some had a military career. So WHAT identifies an educated person if they do not have Epilepsy ? You can hear & see how Bill Gates thinks. We better get back to using a library & encyclopedias again. Ones I used, there was not any LINKS or WEB SITES in those pages to distract a brain from learning what they are suppose to be reading about. The computer has done more harm, from the wicked & evil than good. Doctors use it world wide, to promote more drugs or gadgets to use than ever before. Doesn’t matter if anything else could work better or actually cure or heal a person. In saying that, ISRAEL is to have good seizure / epilepsy treatments, that treats the CAUSE for all there than have epilepsy. They also have accepted people world wide to have what they do done for them. Sadly it takes MONEY to go there, as they say,, Follow the money. NIH, JHU & others could do what ISRAEL is doing, but BIG PHARMA & FDA RULES & they say NO.

    Liked by 1 person

    Comment by C D — March 3, 2019 @ 7:38 AM

    • My epilepsy happened in the 60’s and it was horrible.

      My only choice was Dilantin or Phenobarital, both of left me like a zombie.

      I don’t know if there were any pay-offs then, because there were so few options.

      As for Google, sometimes people are forced into self-diagnosis (which is wrong), because the doctors don’t have a clue and don’t take the time to explore further.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — March 3, 2019 @ 10:42 AM

  4. The moral of this story was that information and education normalized Ellen’s epilepsy. The demystifying led to enlightenment and the end of ignorance. When I had My third seizure and was diagnosed with epilepsy one of My best friends said ” Shitty break, You know what You have to do now is get a tattoo on Your tongue stating “IN CASE OF EMERGENCY DO NOT INSERT SPOON” A lot of fools out there who would do just that “Which is just what I needed witty empathy and zero sympathy.

    Liked by 1 person

    Comment by Josh Garrett — March 3, 2019 @ 11:11 AM

  5. Life is real messed up especially when people can be so cruel. I didn’t start to have seizures till my late 30’s, but i can somewhat relate to Linda, since when i started school i did not know a word of English. I starting first grade in NYC and not knowing a word of English meant i couldn’t talk with the kids, or the teachers. So i know what it feels like to eat alone and not have any friends that i could interact with. During recess i would look out the fence to where the older kids were playing to see if i could see my brother. Only happiness i had was knowing my brother was in the same school, and if i needed something he could help. When u are supposed to be learning social type skills, i was still trying to learn how to speak. So i’ve always felt like the outsider.

    Similar things happened returning back to work, once everyone know of my tumor and seizures, i was never looked upon as an equal. The majority of people where ok with it, but there were those few that used it against me.

    Liked by 1 person

    Comment by Zolt — March 3, 2019 @ 11:44 AM

  6. Oh Zolt, what a double whammy.

    Two strikes against you and abject loneliness as the price.

    Your story breaks my heart.

    It is a double discrimination that few of us have to endure.

    Like

    Comment by Phylis Feiner Johnson — March 3, 2019 @ 1:03 PM

  7. Beautiful story!
    Great to see one caring soul making a difference, breaking barriers & social stigma to make this world a better place to live.
    Linda, the new girl in the school is certainly a champion of goodwill, reaching out to help a classmate she doesn’t even know yet & challenge a scary medical disorder she had never encountered before.
    Ellen is fortunate to have a good friend to help overcome the odds.
    Thanks for sharing the inspiring story for it’s good to know there are good people in this world, who care to make a difference in our lives.
    Gerre

    Liked by 1 person

    Comment by BahreNegash Eritrea — March 3, 2019 @ 1:42 PM

    • If you might guess, I was the Ellen.

      But, with no support. (Not to mention respect.)

      Unfortunately, there was no Linda.

      Like

      Comment by Phylis Feiner Johnson — March 3, 2019 @ 1:50 PM

  8. I noticed in the story that not one *man EVER “came to the rescue.” It was always my *mother, who went to the schools and told teachers, “she has ‘blackouts.'” Even took me to the neurologist.

    In The mid *1950’s, my pediatrician put me on *Phenobarital. Later, I went to Richmond’s *First Neurologist, when 8 years old. Dr. Adams then put me on *Dilantin mixed with *Mysoline, now called *Primidone. I was loaded with chemicals!

    No. I didn’t have bad seizures. But once called an *epileptic, you are *Labeled. Doesn’t matter how *good you are. Once, I DID hit a home run when we played baseball, The next time, I “was chosen” closer to the top of the list. After that, always *last, as usual.

    Fifth grade was the worst! There were two boys and one girl who continuously teased me. One day, the boys got in front of entrance to classroom, preventing me from going inside. David even pulled my pony tail, causing hair to come out. The teacher? She sat at her desk and said: “Now boys. Leave her alone.” All other students remained seated at their desks, laughing! The irony. This teacher went to our church! And my “dad” sold hay to David’s dad, “to feed the cows.” Even a cow had more value than I did! And this boy’s family was *Pentecostal? Yet, my “dad” did not say a word to Mr. Stells, about David, his son. That *money was much more important than his daughter.
    A couple of years ago, I read that David died from *a brain tumor.

    “Will you forgive me?” Such simple words. Today, we have *Facebook. Some of us can easily be found. Such words would be so nice for a now, mature person to write someone. There are all kinds of healing. Spiritual Healing, to me, is equally as important. People with epilepsy need to be acknowledged as *important by others. There is no excuse for any kind of *abuse to someone with epilepsy. For the record: My husband is a Narcissist! Everyone keep safe.

    Liked by 1 person

    Comment by Effie Erhardt — March 3, 2019 @ 2:16 PM

    • Holy is as holy does.

      It’s a shame you had to deal with such hypocrisy, not to mention the torment of others.

      And to live with such total disrespect. (“Even a cow had more value than I did!”)

      You had more than one demon to fight.

      Like

      Comment by Phylis Feiner Johnson — March 3, 2019 @ 2:52 PM

  9. Excellent story! Haven’t we all lived this?

    Liked by 1 person

    Comment by Maralou Higgins — March 3, 2019 @ 4:17 PM

  10. Goodmorning Phylis 😊. WOW!! I read this and for reason I shake my head and even as an epileptic have to wonder simply about human nature myself. Personally I FOUND FOR MYSELF I always felt safest with my classmates, friends and SOME FAMILY (of course until I became an adult, got married and had children myself)!!!!! To this day when we all an opportunity to be together as a class I JUMP AT THE CHANCE!! When I look at it now it was the teaching environment, school and believe or not even SOME CLOSE FAMILY!!!!! I was told by some close family who were adults I COULD NOT SWIM, SKATE, DRIVE, PLAY BASEBALL, RIDE A BIKE OR MY HORSES or even to this day referred as a liar (use my epilepsy to my benefit), and that I would NEVER DRIVE OR GET MARRIED AND HAVE CHILDREN!!!!!!! LOL!!!!! Wow they did they ever have that wrong!!!! I got married, raised my children, rode my bike and horses, drove my truck, swam in the river, jumped off the bridge and coached various sports. I.e.hockey, baseball, reffed soccer, built my own fence, on and on. YES I WOULD SEIZE AND GET BACK UP AND KEEP GOING!!!! THEN IT HIT ME!!!!!!! School, sports, few teachers, friends, HUSBAND AND CHILDREN, teammates were what LIFTED AND HELD ME UP!! As well as my grandma, great grandparents, and great aunties and uncles (while they were on earth. I still have very close connections with my friends and RARELY SPEAK WITH my own biological extended families. I found and still occasionally find I always say sorry after a seizure and tell whoever is with me not to tell anyone because I don’t want them (my aunties or biological family) to get mad or scream at me after a seizure. There were and occasionally still are times when that happens, but I learned to stay away from everyone (primarily aunties and family who do that to me or have don’t that to me in the past) and drama!! OR IT TRY TOO create drama!! LOL!!!!! In all honesty I tolerate them. I depended on my old people and my friends because they never ever made me feel bad, or screamed at me and to this day are still here (minus my old people)!!!!! 💕. It’s hurtful to hear from a very close family member that I will not be married for long or that “he will leave me if I have or keep having seizure!!”!! I’ve been married for 27years and still am!! 🙏🏼🦅❤️. People need to be mindful of their words and actions because all it takes is to have a fall and BANG “YOUR AND EPILEPSTIC!!”. I LOVED AND STILL LOVE MY FRIENDS!!!!! They were and are the ones who TRULY KNOW ME AND HAVE MY HEART AND SOUL FOREVER!!!!!!! OF COURSE MY HUSBAND AND CHILDREN ARE AT THE TOP OF THAT LIST!!!!!!! 😘🙏🏼🦅😇❤️😊

    Liked by 1 person

    Comment by Kathy S.B — March 4, 2019 @ 1:12 PM

  11. I do not understand why she could not go swimming When I suffered from Epilepsy I was in swimming lessons and going swimming all the time. I had enough warning to get out of the water.

    Liked by 1 person

    Comment by Jill Whiting — March 13, 2019 @ 8:25 PM

  12. I almost drowned too!! Lol but I NEVER LET IT STOP ME!!!! Lol as my best friend and I sat on top of the bridge staring down ALL AFTERNOON !!!!!!! Only to realize the only way to get down and use the washroom was to jump!! And yes AGAIN AND AGAIN! I knew everything did was crazy, but then again I also knew when I JUST COULDN’T GO OUTSIDE OR GET UP OR SEE LIGHT AND HEAR NOISES!!!!!!! It broke my heart on one hand, but MADE ME EVEN MORE DETERMINED ON THE OTHER HAND!!!!!!! I figured not much worse could happen 😃 so why not try!! 😘

    Liked by 1 person

    Comment by Kathy S.B — April 4, 2019 @ 9:49 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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