Epilepsy Talk

Dating Disasters and Epilepsy | February 5, 2021

When I was a teen I fell down, walked into walls, bumped into virtually everything in my path, and almost drowned in the shower.

So, you can imagine what a disaster dating was.

Of course, in my infinite wisdom, I would never tell my dates that I had epilepsy. 

My parents wouldn’t even utter the word, so rather than become a pariah, I kept my mouth shut.

Bad idea…

For example, I was lusting to go out with Ricky Schwabacker for 2 years. I mean, he was a big-time senior and I was just a lowly sophomore.

So finally, he asked me out and we went to some kid’s house whose parents weren’t home. Oy.

Everybody sat in a circle and smoked dope. (I didn’t, because drugs were far from “recreational” to me.)

Then a very stoned Ricky and his friend sat down to play chess.

Suddenly “BOOM!” My head went crashing through the wood chessboard and I was out cold.

They thought I was dead. And they couldn’t figure out whether to call the police or not.

If they called the police, they’d be busted for dope. So, they decided to just sit it out until they figured out a plan.

When I suddenly regained consciousness, everybody was relieved (especially Ricky) and Ricky took me home.

Needless to say, that was my last date with Ricky.

Then there was Tommy who took me dancing.

Unfortunately it was the disco era.

And we walked into a room with a mirrored ball spinning, strobe lights flashing, and rock music booming.

I tried not to look (ha!) and went onto the dance floor, gyrating with everyone else. The difference was, I was having a seizure!

When the music stopped and everyone drifted back to their tables, I melted down to the floor. The crowd was no longer propping me up.

So you can see why I wasn’t everybody’s first choice for a date. And why I felt so alone…

Nobody knew how to act around me.

My own parents didn’t even know what to do with me.

Epilepsy became my “dirty secret.” Like it or not…

But after those many fiascos (and MANY years later), I met a guy at work who became a buddy and we started hanging out.

The first time I was in his apartment, I had a flaming seizure. I figured: “Oh no. Here we go again.”

The guy was so sweet and gentle and considerate, I couldn’t believe it.

Kind to ME? Little old damaged me?

Instead of running for the hills, he asked if I was having a seizure and what he could do for me. (It turned out that one of his best friends since second grade had epilepsy).

Yes, I had hit the jackpot.

A warm, caring guy who accepted me as I was, no problem. (But many seizures!)

I decided: He’s a keeper.

We’ve been married for 40 years.

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  1. Reblogged this on Disablities & Mental Health Issues.

    Liked by 1 person

    Comment by Kenneth — February 5, 2021 @ 11:09 AM

  2. Wow! Phylis, your earlier experiences with dating were nothing short of horrific. Your stories make me cringe.

    I have had strange encounters as well.

    After getting enough nerve to ask a girl out to the movies, she agreed. Once there, we got comfortable in front of the screen as the film started. All of a sudden, I noticed that the screen was black (turned off). Not only was the screen turned off, everyone was gone (including my date). My shirt was wet so I figured that I had had a seizure.
    You would think someone would have stuck around. How about the theatre attendant? Hmm!

    Liked by 2 people

    Comment by Daniel — February 5, 2021 @ 1:09 PM

    • Understand your pain. I had a seizure while speaking in front of approximately 200 people at an industry convention. I remember people walking around me, not stopping, the event moderator speaking loudly to ‘sit down’ ! and finally watching all attendees walk out the exit doors. This ended an almost 20 year successful professional practice career, that achieved millions in revenue. Within 3 months, all clients abandoned our firm. These are facts, not complaints. I am thankful to have had the success while it lasted.

      Liked by 1 person

      Comment by Roy Anthony — February 5, 2021 @ 6:28 PM

      • Oh Roy, I know several people who were in the same sinking ship as yours. Industry giants who had massive seizures in the middle of a key presentation, only to lose their audiences and their jobs.

        I even know of a reverend who’s been forced off the pulpit because of seizures. (I know, very Christian of them.)

        You work all your life to build something and then with a nasty twist of fate, it’s vanished. I’m so sorry.


        Comment by Phylis Feiner Johnson — February 6, 2021 @ 9:53 AM

  3. Nice girl, Daniel. I guess you didn’t ask her out for a second date.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — February 5, 2021 @ 2:09 PM

  4. Well at least you asked someone to out with you, I have no memory of teenage years or even if I went out at all. I’m sorry about your wet t-shirt, I had a number of drop attacks over the years. My ‘hard to control’ type of Epilepsy wasn’t discovered until the latter 1990’s though I originally collapsed in my senior year of high school over 30 years ago.

    Liked by 1 person

    Comment by Leon Chavarria — February 5, 2021 @ 4:09 PM

  5. Oh Leon. Teenage years are hard enough without the misery of epilepsy and a blur of time. Why wasn’t your epilepsy diagnosed, since the symptoms seem so apparent? (Easy for me to say.) Was there innocence or denial going on?

    Is your epilepsy controlled now?


    Comment by Phylis Feiner Johnson — February 5, 2021 @ 5:06 PM

  6. I know exactly how that feels.

    Liked by 1 person

    Comment by Emma Kent — February 6, 2021 @ 10:38 AM

  7. That’s wonderful. Maybe there’s hope for me after all….

    Liked by 1 person

    Comment by Melissa Dolloff — February 6, 2021 @ 10:51 AM

  8. Epilepsy is so hard to understand. It has been kept in the Dark Ages for so long. It runs rampant in my family. My son had absence seizures since he was 13. Once when we moved back to our old neighborhood a girl from his elementary school came to visit. They were now 15. She confided in me and my mom that she had seizures and was ashamed to tell my son. We unexpectedly laughed. She was shocked. We held her hand and told her he had them too. She laughed too. Being open about epilepsy creates education and in some cases unity. There are so many people with the disorder or who have a friend or family member with it. Little did I know that two years after this event, I would find out I had it in a much more serious form. You just don’t know.

    Liked by 1 person

    Comment by Barbara Monroe — February 6, 2021 @ 11:01 AM

    • “Full disclosure” is often a tricky situation. And explaining epilepsy to another person can be a litmus test. Will they stay or will they leave?

      I know of so many kids that were deprived of popular activities (like sleepovers) because of their condition. Moms just couldn’t handle the possibility.

      A lot of it comes from fear. What is it? What do I do? What happens if the person has to go to the hospital? That’s where a backup system comes in handy.

      But their serendipity was an unlikely event. The opportunity to form a lasting bond of commonality.
      Unfortunately those are few and far between. Probably because so many people don’t want to “come out of the closet” about their epilepsy.

      I hope you are able to find that your own candor brings acceptance and understanding, too.


      Comment by Phylis Feiner Johnson — February 6, 2021 @ 11:31 AM

  9. All of your experiences are heartwrenching. My heart goes out to all.

    Liked by 1 person

    Comment by dv — February 6, 2021 @ 1:27 PM

  10. I had really bad timing. I had been seizure-free for four years. I made it through high school without having anyone see that I had epilepsy. But since I watched my sister and mother pass away in my junior and senior year, I got frustrated, I got angry, I did everything I shouldn’t have.

    I met my wife at a homecoming. I was there with two friends. She was there with two friends. All of a sudden, the friends want to be by themselves so it was just the two of us. We talked. I asked if I could take her home and that’s how it all started.

    But one night, I got a feeling I hadn’t had in a while. I was scared for no reason and I knew that was how my seizures would start. I was driving so I pulled over and sure enough, I blacked out. I had the first seizure in four years. I had no problem explaining what happened and she acted like she knew what I was talking about. I took her home and felt like everything was over. I wouldn’t see her again.

    Then a week later she called and asked if she could come over and talk to me because she knew I couldn’t drive. She explained how scared she was and that she wanted to look in my car for her ring. We talked. We never found the ring, but she said she was still interested in dating and 23 months and a few seizures later, we’re married.

    It took me 21 years of marriage but I gave her something she missed. After surgery, her seizure-free friend now husband returned.

    BTW, a few years after we had that talk, she told me she never lost the ring. She just wanted to see me again. 😍

    Liked by 1 person

    Comment by Ed Lugge — February 11, 2021 @ 3:58 PM

  11. What a beautiful story, Ed. I think she knew she had a winner from the start.

    I love the ring part!!! 🙂 You just can never tell.

    But she told you loud and clear that she wanted to be with you by her actions. And you know what they say, “Actions speak louder than words.”


    Comment by Phylis Feiner Johnson — February 11, 2021 @ 4:15 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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