Epilepsy Talk

What were your most formative moments? | January 23, 2022

For me, it was three different stages, ages and issues…

1. Growing into my own skin…

Being a pre-teen or a teenager is, to say the least, no picnic. Add the layer of epilepsy on top of it and you’ve got a disaster waiting to happen.

But once I started to mature and grow more comfortable in my own skin, I could accept who I was, that epilepsy was part of that, and eventually become an advocate myself.

2. Going from “ugly duckling” to “swan”…

Every day of my life, my beautiful mother told me (or reminded me) how fat and ugly I was.

Well, yes. I was quite the chubbette at ten. But, by fourteen years old, I was 5 feet, 10 inches and 125 pounds with long, long hair (which I lost, thanks to Dilantin).

I think you get the picture. Unfortunately, I didn’t, for decades.

3. The biggest discovery and life-changer was knowing I was worthy of love…

Lots of people — family included — talked the talk. But they didn’t walk the walk. Especially when my old friend epilepsy stepped in.

But there were those loving, loyal few who filled my life with joy. And made me feel beautiful — all over.

And then came Arthur. A flaming seizure on our first “date” and wedding bells 366 days later. He is my friend, my partner, my love…still 42 years later.

And they all lived happily ever after.

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  1. Reblogged this on Disablities & Mental Health Issues.


    Comment by Kenneth — January 24, 2022 @ 7:15 AM

  2. Please allow me to point out two similar situations
    1. When I heard there were no signs of seizure activity on my eeg after surgery

    2. Coming home in better shape after I had a quintuple bypass performed last Friday

    Liked by 1 person

    Comment by Ed Lugge — January 26, 2022 @ 7:54 PM

  3. Thinking of this it’s like adding up, and now it’s like which ones do i choose.

    1) Couple of head injuries, one at age 6 falling out of a truck. I didn’t close the door right and this was before seat belt laws. At age 10 bro pushed me off my bike and landed on my head and had a concussion. Then in teens getting into a fight that was like 2 against 6.

    2) Being alone in the hospital finding out i had a brain tumor the size of a baseball and it needed immediate removal otherwise i’d go into a coma.

    3) Finding out i have seizures after my brain tumor operation.

    Liked by 1 person

    Comment by Zolt — February 3, 2022 @ 12:00 PM

  4. Wow, head injuries, a brain tumor, the the aloneness of it all. How difficult that must have been. Not to mention the devastation.


    Comment by Phylis Feiner Johnson — February 3, 2022 @ 1:06 PM

  5. Hi,interesting life events of others or their views can be helpful in knowing our own lives ! Often the case we learn in hindsight right ? 🙂
    Not sure I understand how to use “formative” here?
    My own life and now survival has been about trauma !
    Peace. Thanks Rick

    Liked by 1 person

    Comment by wichitarick — February 15, 2022 @ 8:12 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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