Epilepsy Talk

What were your most formative moments? | May 24, 2024

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.

Then came Arthur. A flaming seizure on our first “date” and wedding bells 367 days later. He is my friend, my partner, my love…still 44 years later.

And they all lived happily ever after.

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4 Comments »

  1. Mark Geist's avatar

    being awake during my brain surgery hereing the drill and saw hereing them say they removed a 3×5 cm piece of brain. Being asked to move my hand and feet.

    Liked by 1 person

    Comment by Mark Geist — May 24, 2024 @ 3:13 PM

    Reply
    • Phylis Feiner Johnson's avatar

      OMG. I’d say that’s life-changing at least.

      Like

      Comment by Phylis Feiner Johnson — May 24, 2024 @ 5:27 PM

      Reply
      • Mark Geist's avatar

        it was all worth it in the end. Being seizure free and med free. But I will never tell someone to have brain surgery. That’s a family decision not FB page or social media. But I do promote getting the testing done knowing whats going on up there is a good thing. This way you can talk over the pros and cons with drs as and family.

        Liked by 1 person

        Comment by Mark Geist — May 24, 2024 @ 5:54 PM

      • Phylis Feiner Johnson's avatar

        It’s got to be an agonizing decision. One, that in your case, was right.

        But no one is assured of the results.

        I think it takes a lot of bravery and faith in your doctor to go forth. And yes, ultimately no one, no where can make the decision for you. No matter how well versed they are.

        Hats off to you!

        Like

        Comment by Phylis Feiner Johnson — May 24, 2024 @ 6:08 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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