Epilepsy Talk

A Fairy Tale | December 16, 2013


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 has 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.

But she had already promised, so she was stuck.

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


18 Comments »

  1. great story. i am glad that ellen got a great friend and linda got one in return. i had gone through that myself in grade school except that my classmates made fun of the way i talked.

    Comment by Crystal Cahill — December 16, 2013 @ 3:19 PM

    • Well, if you haven’t guessed, Ellen was me (You know “E” for epilepsy) AND I was the new girl.

      A double trouble deal. I went to 4 schools in 4 semesters so, between being the “new girl” and having flaming seizures (4 a day), it was pretty miserable.

      And kids really did walk around me when I had a seizure in the hall. (Except for the brief time I was in private school. But that’s too long a story to tell!)

      But Valerie (Susan) was a true friend for the 6 months I knew her. And I’m grateful for that.

      Comment by Phylis Feiner Johnson — December 16, 2013 @ 5:31 PM

  2. That was a great story and I started having that problem when I was a teenager and got Diogenes with epilepsy at age 12. Lots of teens would just make fun of me or laugh after I had one cause I couldn’t help it. I’m sure glad she became your friend and helped the other students know what to do if you do have one.

    Comment by Corina — December 16, 2013 @ 4:35 PM

    • Oh those hormones. Aren’t they wonderful?

      I had my first seizure at 12, but my parents were in denial until I was 14.

      So what if I walked into walls and fell down the stairs? I was just “clumsy”. :-(

      Comment by Phylis Feiner Johnson — December 16, 2013 @ 5:34 PM

  3. Loved the story and very true as my daughter was the same as élan when she went to school

    Comment by Maggie crawford — December 16, 2013 @ 6:27 PM

  4. So sad, but often true. :-(

    Comment by Phylis Feiner Johnson — December 16, 2013 @ 7:07 PM

  5. And look what happened to that little girl. She grew up to become a fantastic epilepsy advocate for many people with epilepsy and that’s why we love her so much!

    Comment by charlie — December 16, 2013 @ 8:02 PM

    • i am speechless. have had epilepsy for 20 years and just had brain surgery. am a member of the copingwithepilepsy site and seen your name phylis so many times, didn’t realize epilepsytalk was your site.
      amazing story of when you were in school! what a friend! i started having seizures as a teenager (15, now 35) but fortunately none at school.
      hugs to all of us that live with epilepsy and support each other, means everything really.

      Comment by nat. — January 12, 2014 @ 5:23 PM

      • Nat, I was an active member of Coping with Epilepsy, but decided to devote my time to this website and 12 pages on Facebook who REALLY need help.

        The people at Coping with Epilepsy are extremely bright and self-sufficent and I really felt I should migrate to those who were kind of “clueless”.

        My “mission” is to help, support and educate those with epilepsy.

        Hence the reason for this website.

        And hugs back to you.

        We need each other, help, support, empathize and have formed a vitual “family”.

        That’s what I want this site to be.

        Comment by Phylis Feiner Johnson — January 13, 2014 @ 10:48 AM

  6. As they say: “Actions speak louder than words.”

    Although in this case, I guess it’s action AND words! :-)

    Comment by Phylis Feiner Johnson — December 17, 2013 @ 10:03 AM

  7. Beautiful Story !!!
    Brought tears to my eyes :-)
    GREAT TO KNOW there are few Angeles out there, leaving behind lifetime IMPRESSION on our lives.
    Thank you for sharing !!!

    Comment by Gerrie — December 18, 2013 @ 9:20 PM

  8. I guess you can tell from the answer to the first comment, who was whom.

    It was tough being BOTH Ellen (seizures) and Susan (who went to 12 schools in 12 years!)

    But hey, you’ve got to survive somehow!

    Comment by Phylis Feiner Johnson — December 19, 2013 @ 10:04 AM

  9. Phylis,
    Just like a young bird learning to fly with it’s own wings had to survive falling & rise up to spread more wings & fly again,,, I wonder if growing up with Epilepsy is TOTALLY different than starting to learn, cope & survive Epilepsy in adult age.

    In my case, having known nothing about Epilepsy for most of my life, my petite & grandmal seizures has got me into more trouble than I ever encountered for most of my life, including getting banned from city, county & state “PUBLIC LIBRARIES” for “public nuisance”.

    Therefore, this nightmare got more burden to survive both in childhood & in adult age.

    KEEP THE POWER OF HOPE COMING !!!

    Comment by Gerrie — December 19, 2013 @ 9:48 PM

  10. Oh Gerrie, how horrible. Where? Why? How could anyone be so IGNORANT?

    Were they from Mars?

    I agree in terms of my life.

    It was sort of learning how to fly with one wing clipped.

    That wing was always clipped. But I somehow learned to fly.

    Comment by Phylis Feiner Johnson — December 20, 2013 @ 10:44 AM

    • Yes Phylis,
      From my experience, I can see, understand & deeply feel for you of the ordeals growing up with ALL the mystery behind the seizures & social STIGMA of Epilepsy.
      Fortunately, your experience made you more stronger & informed about Epilepsy, to manage, provide & share important information about Epilepsy, with the rest of the world on EpilepsyTalk.

      In my case, while the learning, accepting & coping process with the seizures was already difficult, coping with the SOCIAL-STIGMA affecting everyday life, BRINGING UNWANTED ATTENTION during seizures has ONLY brought me more hurdles to overcome.

      Even the Public libraries, “public institutions” familiar with my grandmal seizures have come to dread the DISORIENTATION, CONFUSION & HALLUCINATIONS of my petite mal seizures, therefore, designated my ordeals as “public nuisance” disturbing & disrupting the rest of library users, totally banning me from coming to the very libraries I paid my taxes all my life for.

      Therefore, besides coping with Epilepsy, coping with SOCIAL STIGMA bringing unwanted WRONG ATTENTION is making Epilepsy, more difficult than needs to be.

      Again, Thank you for this website, I’ve come to depend, relay & share my ordeals to live & cope with Epilepsy & the stigma breeding WRONG ATTENTION.

      Comment by Gerrie — December 20, 2013 @ 8:38 PM

  11. Gerrie,

    I’ve had it better than most people.

    Aside from the fact that my parents were in complete denial (a psychologist and surgeon among them) and refused to say the “E” word.

    I just had “uneven brain waves”.

    I never even heard the word “epilepsy” until I got to college.

    I walked into walls and fell down the steps but I was just “clumsy”.

    There was this medication I was given every morning, but I figured it was for my colitis.

    Even when I went into a coma (toxic dose), I didn’t have a clue. And no one explained it. (How dumb was I?)

    But, I was just 14 and neither had the research skills or resources to figure out what was going on.

    But, as I said, I was one of the luckier ones.

    My life wasn’t deleted or cruelly discriminated against, it was just kinda passed over.

    Comment by Phylis Feiner Johnson — December 21, 2013 @ 9:34 AM

    • Again Philis, Pleasure to know you overcame the hurdles to conquer this ordeal.
      Following your footsteps, some of us are learning from your experience on how to cope with Epilepsy, which sometimes seems very difficult.
      Add the social-stigma & unwanted attention our seizure have come to ATTRACT, the burden gets heavier.

      Where are the Linda’s of this world, when we need them the most?

      In any case, life has to go on with or without Epilepsy or the social stigma.

      Comment by Gerrie — December 21, 2013 @ 10:30 AM

      • Well, we bless our lucky stars for those special people like Linda in our lives.

        Comment by Phylis Feiner Johnson — December 21, 2013 @ 12:20 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've 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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