Epilepsy Talk

Return from the edge… | April 27, 2024

I almost died.

For a while I couldn’t even read.

My brain needed rebooting.

They told me my heart had stopped and I was lucky to be alive.

It took me several months for my cognitive abilities to return.

Months during which I had plenty of time to think.

Previously, I had a high paying job in advertising, which I hated.

I loved my clients and they loved me.

But I wanted to help people.

It was time to give back.

And my near-death experience gave me the perfect opportunity.

(Once I found the keyboard!)

I went to all sorts of non-profit organizations. No one wanted me.

Until the Epilepsy Foundation of Eastern PA welcomed me with open arms.

The monthly support groups were like manna to the soul.

Nevertheless, it was not enough for me.

I wanted to write about epilepsy, a subject dear to my heart.

I sought to put epilepsy out in the open and talk about it.

After decades of epilepsy, that’s what I knew best.

Along with the fear, discrimination and ignorance that went with it.

My parents wouldn’t even say the “E” word.

My step-father surgeon told me my brain waves were just uneven.

As I smashed into walls and fell up and down the stairs.

But there was nothing wrong with me.

I couldn’t bear it. And knew that I was not alone.

I truly believe, in their heart of hearts, that people want to help.

They are kind and caring. Not ignorant and selfish fools.

It was just a matter of showing them how.

I wanted to start a website. But, I didn’t have a clue how.

Passion was my motivation.

Helping others was the key.

If we can’t help each other, who can?

After much research, gnashing of teeth and some false starts, Epilepsy Talk was born.

The purpose is to educate and inform. Those who have epilepsy, plus their near and dear ones.

I had finally found a safe place.

Where people can come, learn, ask questions, even vent.

People who wanted to commit suicide have been talked “off the ledge”.

Others have helped one another cope and even prosper.

These kind, caring, compassionate people have become my life.

The reason I get up in the morning.

Epilepsy Talk has become the home I never had.

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6 Comments »

  1. William's avatar

    Thank you–an inspiring story.

    Liked by 1 person

    Comment by William — April 27, 2024 @ 3:41 PM

  2. QMFUB's avatar

    Thank you for sharing your story.

    Like

    Comment by qmfub — April 27, 2024 @ 6:17 PM

  3. Nancy's avatar

    Thank you ! Love your writing ! It is hugely helpful !

    Like

    Comment by Nancy — April 27, 2024 @ 9:41 PM

  4. Glenda Bowen's avatar

    Need name Dr who specializes in epilepsy for my son thank u

    Like

    Comment by Glenda Bowen — April 30, 2024 @ 9:57 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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