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Confessions of 40 years with epilepsy
Fri, 04/09/2010 - 17:17Topic: Teen Zone
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
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