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Confessions of 40 years with epilepsy


When I was first diagnosed as a teen, no one around knew what to do with me.

My parents refused to use the “E” word. People treated me like I was some kind of pariah (which didn’t make me feel warm and fuzzy either.)

Guys never called back for a second date.

The Dilantin made me feel like a zombie. I even went into a coma once.

And my beautiful, long hair was falling out.

I couldn’t drive, couldn’t participate in athletics, couldn’t even get through a date.

I constantly had to lie. Or else no one would hire me. (Not good for their health insurance.) And I was constantly on my guard.

One day, the copy machine next to my office caught on fire. Everyone was evacuated from the building while I was laying on the floor of my office (with the door closed), out cold. When I came out, I innocently asked “where’s the copy machine.” They all looked at me like I was from Mars.

So I quickly had to make up some lame story. I couldn’t even have a seizure in peace!

Epilepsy was my "dirty secret." Like it or not…

Until one night, I had a flaming seizure on a date and the guy was so sweet and gentle and considerate, I couldn’t believe it. Kind to ME? Little old damaged me? I was amazed and said to myself: “He’s a keeper!” And he has been for 30 years.

Then, last year, I almost died. My heart stopped, I was in a coma and on life support for 5 days, then in the hospital itself for 5 days, until I was transferred to another hospital for rehab, followed by 4 weeks of out-patient.

But I still couldn’t button a shirt or tie my shoes, no less find the key board. Exasperation turned to tears. I was useless.

Yet there was certainly time to think. (Almost dying can certainly change your perspective.) And I realized I was one of the lucky ones. After all, I was still alive. And I was better off than a lot of other people who had Cancer, Alzheimer's, Cerebral Palsy, and Parkinson's, to name a few.

So I decided to turn lemons into lemonade. I ditched my day job (I had my own freelance writing business for 25 years) and I became a full-time epilepsy advocate...helping others like me and trying to teach the uninformed and misinformed, like so many people in my life had been.      phylisfeinerjohnson     www.epilepsytalk.com

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