Epilepsy Talk

Poetry is music for the soul…  | July 3, 2025

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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7 Comments »

  1. Ed Lugge's avatar

    I wrote six poems as I progressed after my surgery.

    Like

    Comment by Ed Lugge — July 7, 2025 @ 5:21 PM

  2. Ed Lugge's avatar

    It’s long. I double-spaced to separate the lines of the poem. This is part 2 of the 6.

    I got a second chance at life Where do I go from here With all the prayers still being said
    Why should I have a fear The fear comes when the warnings start The ones that used to say A seizure’s coming so it seems But now they go away There are setbacks that you notice But yourself you cannot blame One is things you can’t remember It may be someone’s name Now look at what I could have lost My math skills and some vision The math, the vision, they’re going strong I made the right decision The attitude has made a change For the better so it seems The kind of person I want to be Is not just in my dreams And then one of my biggest pains Was coming to an end For ten straight months I couldn’t drive Now I’m “On The Road Again” Six months went by and I was ready For some testing to begin A brain wave and an IQ test To see what progress there’s been The IQ’s down but I didn’t care It was high enough for me The brain wave was my main concern Improvements I wanted to see So then I heard those test results And thought I lost my mind Because as far as seizures go They said there was no sign How I can top that, I don’t know But one was in the making Finally, I’m cutting back On the pills I had been taking When asked which pill I wanted off That was an easy decision For one I knew was causing me Dizziness and double-vision But then I had another battle With confidence it appears How could this problem go away It’s been here for 40 years So try it one step at a time Don’t ask if it’s for real You cut back on the pills you take And look how good you feel It seems I have control of this But there’s one problem I guess A working father of three young men Now that spells anger or stress Well sure enough that time has come My stress is at its worst I’m getting uptight, upset, riled And this feeling is a first It feels like chills down my left side So I push the panic alarm But then I find it doesn’t last It’s not causing any harm I asked for help from other people To them, how does stress feel Then I would find I’m not alone That feeling is for real It wasn’t fast but finally The first year has gone by I look back and I find that I Have been a lucky guy As far as how this year has gone Give credit where it’s due I worked real hard but family, friends I give the credit to you My goal right now is just how much I can help other people who Are having trouble coping with The setbacks they’ve been through That opportunity came my way With phone calls I would get From friends I knew from long ago To some I never met If asked about the surgery The answer that person gets Is that I needed big-time help And I have no regrets If you find you’re a candidate The decision you must make Is how much you will benefit From risks you have to take I took some risks but didn’t care If I was right or wrong I wasn’t living, just existing It had been way too long I told them my neurologists Were a husband and a wife And they could be your start as well To a second chance at life The past few years I’ve offered help In any way I can To raise some funds I took a walk…I rode a bike…I ran Another way that I would help A camp counselor I would be Where kids with epilepsy Get the feeling of being free When my morale gets this big lift While others I can aid It’s the only time that I’ll admit I’m getting overpaid Now my comeback is a journey And I’d say I’m halfway there The second half is just as hard But I’m ready for that dare As I sit back and look at life I notice from a glance I’m more in charge of how it goes Since I got that second chance

    Liked by 1 person

    Comment by Ed Lugge — July 8, 2025 @ 11:07 AM

  3. Ed Lugge's avatar

    I see it didn’t double-space so look for capital letters as the start of the next line.

    Like

    Comment by Ed Lugge — July 8, 2025 @ 11:12 AM

    • Phylis Feiner Johnson's avatar

      Wow! What a difficult and courageous journey you’ve been on.

      But you persevered, getting help and helping others.

      I think the give and take are key.

      Without them, the course is even more complicated as you showed.

      Thank you for sharing such a personal and provocative poem.

      I’m sure it will resonate with others.

      Like

      Comment by Phylis Feiner Johnson — July 8, 2025 @ 11:21 AM

      • Ed Lugge's avatar

        Here’s a second poem (#4). It’s shorter. It gives you an idea how it feels to watch a dream come true. I had surgery in 2000 and this was written in 2005. To keep you clear on a part of this poem, my sister died 26 years before my surgery.

        Since three poems I already wrote

        I’ll make this next one short

        I’d say this is a family skill

        But writing’s not a sport

        This is the day I’ve waited for

        It started with a book

        And with a name like “Seizure Free”

        I had to take a look

        The author was a lady who

        Had surgery just like me

        For three years, she was seizure-free

        So what would my goal be?

        You know I’ve been competitive

        And that will stay alive

        If now it’s been three years for her

        I’ll set my goal at five

        Well Year One was a rocky one

        I sometimes had my doubts

        The way I didn’t want to feel

        It had its ins and outs

        Year Two I knew would be a test

        I’m down to just one med

        The question then was by itself

        Could it control my head?

        Years Three and Four I felt the same

        Some progress could be seen

        Like a well-paved road from start to finish

        With a few bumps in between

        Then came Year Five and I’m determined

        I’m going to reach my goal

        I won’t let anyone, anything

        Put me back in the hole

        In the last month came a problem

        And from all that I could see

        Someone was worrying way too much

        And that someone was me

        My appointment was tomorrow

        And I could say I’m fine

        But then that night some auras came

        Had too much on my mind

        So I explained the happenings

        They told me I’m OK

        But I asked if they’d help me out

        And wanted it this way

        Another brain wave’s what I want

        The last was 2001

        If you want me to settle down

        I want to have this done

        So they gave me what I asked for

        They asked me for a date

        My sister’s birthday sounded good

        So let’s try December 8

        The brain wave went well but one part

        The part that really stunk

        Hyperventilating five minutes straight

        Is a cheap way to feel drunk

        The next day I would get results

        It wasn’t long I waited

        The only action they could see

        Was surgery-related

        What that means is there was no change

        From the last test that they gave

        The next time I get worried like this

        I’ll settle down and behave

        And now since I have reached my goal

        For the next goal, I’ll be clever

        I won’t set up another date

        My next goal is forever

        Liked by 1 person

        Comment by Ed Lugge — July 8, 2025 @ 2:27 PM

  4. Phylis Feiner Johnson's avatar

    This poem had me rooting for you every step of the way. It was so intimate, I felt like I was right there beside you!

    Bravo! MORE!

    Like

    Comment by Phylis Feiner Johnson — July 8, 2025 @ 2:41 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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