Epilepsy Talk

Poetry Is Music To The Soul… | April 15, 2021

And we souls with epilepsy could use a little music.  But, since we can’t hear you, we’ll have to settle for the written word.

So, whether it’s lyrics or poetry…write on!

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Posted in Epilepsy
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  1. “You think that I don’t even mean
    A single word I say
    It’s only words and words are all I have
    To take your heart away”

    bee gees

    Liked by 1 person

    Comment by Zolt — April 15, 2021 @ 10:03 AM

  2. Wonderful!! Thanks, Zolt.


    Comment by Phylis Feiner Johnson — April 15, 2021 @ 10:16 AM

  3. Yes, Indeed!

    Liked by 1 person

    Comment by Nancy — April 15, 2021 @ 11:21 AM

  4. I’ve written six poems since I had surgery but each one is pretty long. Some have over 20 verses. The first talks about my life with epilepsy up to the surgery. The second describes the early years just after surgery. My original goal from the surgery was to go five years seizure-free to top the longest string before that in high school so poems three and four talk about reaching that goal. The fifth is about another feat – going off meds and the last one I just wrote on how it feels to reach 20 years and seeing what you got to do that you never thought you’d be able to do.

    Liked by 1 person

    Comment by Ed Lugge — April 15, 2021 @ 12:49 PM

    • Ed, why don’t you write a few excepts from your favorite poems for us?

      That would be a real treat. I’d love to read your work.


      Comment by Phylis Feiner Johnson — April 15, 2021 @ 1:16 PM

  5. I have been a reader of Epilepsy talk for a few years now, and I agree, poetry is wonderful. Being an Epileptic myself for many years poetry and writing stories have been a significant source of therapy for me, as an inspiring writer I have been writing poetry for many years and I enjoy it immensely. I would like to share a poem that I had written back in 1998 when I lost my father, who was a WWII Veteran. I hope everyone enjoys it.

    The Ghosts Of Normandy

    I stand alone on this once blood-stained beach

    The cool waters beneath my feet, I see the ghosts of Normandy.

    The ocean mist’s blowing through my hair, the battles won and lost are here,

    The sacrifices men have shared, a seagull soars high into the air.

    They seem to speak of mighty battles, of their fallen friends and a life hereafter.

    Heroic deeds were on display of individual men, their freedom, the honor and
    All of the passions played.

    I stand in awe of you; to the many souls who gave so much of life we hold,
    Our freedoms, liberty you all bestowed..

    I will not forget you; my fallen friends for the world are safer than it has ever been.

    Let me walk beside you now, do not fear the distant sounds for they are trumpet’s
    Playing loud to freedom’s voice is all around.

    Walk high above the distant clouds; to eternity forever bound.

    May your journey be filled with all of its grace,
    May your souls continue onto the final resting place.

    I will always think of you may fallen friends, until your ghosts return again.

    In memory of my late father George Richards.
    Kevin Allen Richards.

    Liked by 1 person

    Comment by Kevin Richards — April 15, 2021 @ 1:03 PM

    • Oh Kevin, that’s fabulous!

      I’ve been writing poetry since I was 14 and NEVER anything as wonderful as that.

      (When I told my guidance counselor I wanted to be a poet, she suggested another job!)


      Comment by Phylis Feiner Johnson — April 15, 2021 @ 1:10 PM

  6. Ed, how about including your favorite except from a few of your poems, so we can get an idea of what they say?

    I’d love to read them.


    Comment by Phylis Feiner Johnson — April 15, 2021 @ 1:04 PM

  7. OK. This is the latest.

    When I was thinking seizure-free
    I thought five years was plenty
    But now I see there was more to come
    I’m looking at year 20

    From now on, feelings like an aura
    They just aren’t gonna scare you
    “Think you’re a seizure? Go ahead.
    I dare you, double-dare you.”

    And then admire what happens next
    The feeling goes away
    Your streak of being seizure-free
    Just added another day

    So now look what was next to come
    You’re 48 and who would think
    It’s something you could never do
    But now you’re allowed to drink

    I think there’s something wrong with this
    How my first night drinking would be
    I’m headed home after two of them
    And my son is following me

    At 52, there was something else
    I knew I’d never done
    I watched my family do a lot of it
    So then I wanted to run

    Getting overheated which led to seizures
    Was the biggest part of my fears
    But with everyone’s help, I started to run
    In races the next ten years

    The next event to start in my life
    A grandparent I would be
    And now here’s something I feared before
    A grandchild being watched by me

    Just having people count on me
    Was something I waited for
    So here I am and I’m in charge
    Of a granddaughter I adore

    I guess I must have succeeded
    With my first job of childcare
    By now every grandkid has been around
    With only grandpa there

    Though it started with a rough beginning
    My career got better with time
    The fact I made it with just a few bumps
    No one’s happier than I am

    Working 31 years for Uncle Sam
    And 42 years all together
    It was like a storm becoming blue skies
    If you compare my career to weather

    So now where do I go from here?
    Oh well, I’m not in a hurry
    Now that I can live life day by day
    And for seizures, I no longer worry

    And who knows? Seizures may return
    But there’s something you can’t take away
    It’s these 20 years of paradise
    And that feeling is here to stay

    Liked by 1 person

    Comment by Ed Lugge — April 15, 2021 @ 1:32 PM


    How inspiring, Ed. Nothing to be shy about and sharing with the world.


    Comment by Phylis Feiner Johnson — April 15, 2021 @ 1:50 PM

    • Thank you! This one and the one I wrote first are my favorites. Believe it or not, I sent you the first one about 10 years ago.

      Liked by 1 person

      Comment by Ed Lugge — April 15, 2021 @ 2:00 PM

  9. Ed, was that when I was going to put together a book? (“Other Voices, Other Lives”) which I didn’t.

    Could you please send the other one again?


    Comment by Phylis Feiner Johnson — April 15, 2021 @ 2:04 PM

    • That’s it. Here’s the poem and it’s longer.

      This battle started long ago
      It was 1961
      Attacks were not as bad back then
      But I wasn’t having fun

      I remember times when I got scared
      Why? I did not know
      I’d need someone who I could ask
      To hold me, don’t let go

      This happened way too often
      And it lasted way too long
      My parents had me see someone
      To find out what was wrong

      They checked me out the best they could
      Then said, “Don’t be alarmed
      This could be epilepsy
      But it’s just a minor form”

      Maybe it was minor at the start
      But soon I went downhill
      They started lasting twice as long
      And getting stronger still

      They sent me to neurologists
      Because they had the skills
      To run the tests I needed
      And prescribe me different pills

      My high school years I won’t forget
      It had good news and bad
      I had no seizures those four years
      But lost two treasures I had

      In December of my junior year
      My sister passed away
      Then senior year was just as bad
      Mom got her call one day

      My attitude got really bad
      The seizures then returned
      Life can be heaven sometimes hell
      Right now I’m getting burned

      I’m starting over so it seems
      When seizures start again
      So now I’m looking twice as hard
      How to put this to an end

      There were times I asked myself
      “Is life really worth living?
      Suicide, now there’s a thought
      But would God be forgiving?”

      A co-worker then gave me hope
      The article she brought
      Gave me the name of someone who God sent…that’s what I thought

      I called him up and asked for help
      He set me up for tests
      We met, discussed the test results
      He said what he suggests

      He added pills I hadn’t taken
      Another thing I’d learn
      He’d build up people’s confidence
      By showing his concern

      It took a while but then I saw
      I was on a streak again
      No seizures for a long, long time
      It looked real good but then

      I questioned what God did to me
      My father passed away
      My seizures started up again
      They could be back to stay

      But then one night I got a call
      It was my mother-in-law
      She asked me if the TV’s on
      And told me what she saw

      A woman’s problem was the same
      As the one that bothered me
      She’s tired of her seizures
      So she’s having surgery

      I watched the test, the surgery
      I was taking mental notes
      I knew that it was what I want
      I now need family votes

      I won their votes…the doctor’s too
      And now the tests would come
      To make me have some seizures
      So they’d know where they came from

      It took six days but finally
      The testing was completed
      So then I found that I could get
      The surgery I needed

      My first prayer answered…now let’s try
      To answer number two
      I want a second chance at life
      Let’s see what we can do

      My confidence would stay with me
      As I had my operation
      With all the prayers being said for me
      I knew my destination

      When I came to, I saw my wife
      My mother-in-law, my son
      My second prayer was answered
      And the battle had been won

      Recovery was half the time
      They said that I would need
      I was going home so I could start
      The life I want to lead

      As we drove home, I found I stared
      At my son and at my wife
      And then I realized what I got
      A second chance at life

      A note about the surgery that will tell you how lucky I am: That TV episode never showed again so how did I see the one time it was being shown?

      Now I’m ready to go walking so I’ll check back later.

      Liked by 1 person

      Comment by Ed Lugge — April 15, 2021 @ 3:03 PM

  10. I’m crying. For both all of the bad, sad stuff that happened to you. And then the joy, the love, your life. ❤


    Comment by Phylis Feiner Johnson — April 15, 2021 @ 3:11 PM

    • The reason I went walking is because I start crying, too, when I write this. I’m sure the fact that they removed my amygdala has something to do with my crying since I don’t have as much control of my emotions anymore.

      Liked by 1 person

      Comment by Ed Lugge — April 15, 2021 @ 4:53 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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