Confessions of 40 years with epilepsy

[PhylisFeinerJohnson]

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.

[Rae1889]

[RobinN]

Very sweet story Phylis. I am glad that you chose to make lemonade. It benefits all of us.

[Crystal11]

It is awesome that you are doing so well now. Wow you have been through a lot. Sounds similar to how I was born... three months premature, lung disease, PDA heart staple surgery at 4hrs old, 8 other surgeries during my 26 years- as well as blindness, hearing impairment and epilepsy.

I educate people about deafblindness and sometimes Epilepsy depening on the lecture I give. If its high school students then its only about adaptive technology but older people or colleges do much better with a medication condition.
How important it is to educate people.
In our last epilepsy support group meeting- we talked about educating people epecially those around us, about our "invisible condition". Epilepsy is invisible until a seizure comes.
In my case, people see my hearing aids, or see me signing with my sis, or they see my guide dog next to me- and so they know I have trouble seeing and hearing.
They would never guess I have epilepy unless a seizure comes. Its embarassing to have a seizure in public- and mine are complex partials. People think I'm "retarded" or drunk or on drugs!!

Anyway- my Mom didn't like the word Epilepsy until a few years ago- even though I was having small complex partials from age 6-13. Then 13-to now they have been longer, plus the addition of drop attacks due to me messing up my meds.

Thank you for sharing you story. You've been through a lot. You are a strong person.
Take care,
Crystal

[carlos.fonke]

Impressive, Phylis.

[Endless]

Thank you Phyllis and Crystal.

Phyllis, your husband sounds wonderful! How lucky you were to find him!

[PhylisFeinerJohnson]

He's a prince. We just celebrated our 30th anniversary!

[BuckeyeFan]

Thanks for sharing your Lemonade. It taste sweet to hear the positives. My hero and I celebrated our 30th anniversary last August.

[PhylisFeinerJohnson]

GOOD for you. Congratulations! :-)

[sally richards]

Well done and such a wonderful and hopeful story... It great to read on a down day and maybe sip a little lemonaid. hugs sally