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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Epilepsy Talk 
“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
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Comment by Zolt — April 15, 2021 @ 10:03 AM
Wonderful!! Thanks, Zolt.
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Comment by Phylis Feiner Johnson — April 15, 2021 @ 10:16 AM
Yes, Indeed!
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Comment by Nancy — April 15, 2021 @ 11:21 AM
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.
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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.
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Comment by Phylis Feiner Johnson — April 15, 2021 @ 1:16 PM
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.
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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!)
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Comment by Phylis Feiner Johnson — April 15, 2021 @ 1:10 PM
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.
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Comment by Phylis Feiner Johnson — April 15, 2021 @ 1:04 PM
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
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Comment by Ed Lugge — April 15, 2021 @ 1:32 PM
CAN YOU HEAR ME CLAPPING?
How inspiring, Ed. Nothing to be shy about and sharing with the world.
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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.
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Comment by Ed Lugge — April 15, 2021 @ 2:00 PM
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?
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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.
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Comment by Ed Lugge — April 15, 2021 @ 3:03 PM
I’m crying. For both all of the bad, sad stuff that happened to you. And then the joy, the love, your life. ❤
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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.
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Comment by Ed Lugge — April 15, 2021 @ 4:53 PM
Or, you could be simply crying for joy.
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Comment by Phylis Feiner Johnson — April 15, 2021 @ 4:55 PM