Epilepsy Talk

Epilepsy and Romance — Getting Personal | May 12, 2017

Romance is so many different things to different people.

But to me, intimacy requires acceptance, faith and loyalty.

The question is; how do you get there?

Especially when you have epilepsy?

Well for me, it was a very rocky road.

Especially when it came to telling a guy I liked or was becoming involved with.

I was hesitant to tell him my “dirty little secret” because I was afraid he’d head for the hills.

But since I couldn’t control when a seizure struck, he’d often find out sooner rather than later and head for the hills anyway.

So the question became: Do I tell this person that I have epilepsy? When should I tell him? How much should I tell?

Common knowledge says, you shouldn’t disclose “your condition” until you’ve “broken the ice.”

Well, I almost broke my head on a first date — instead of the “ice” — and the poor guy thought I had died on him!

On the other hand, I told a guy I had been seeing for a while that I had epilepsy.

Instead of asking questions or showing interest or even curiosity, he said: “Let’s have sex. I’ve never screwed anyone with epilepsy before.”

Just goes to show.

You SHOULD develop a solid friendship first. Where you’re able to talk to each other about things that are deeper than movies, mutual friends, dinners or sports.

When you feel he’s ready and you’re ready. Because, before I spill the beans, I want that person to really know me. And appreciate me as a person.

I don’t want to be seen as an epileptic. I want to be accepted and loved as a person who happens to have epilepsy.

I want to confide my feelings. What it’s like for me to have epilepsy.

My fears. My hopes. My dreams.

I want to be able to share all this with him. (And scare the hell out of him?)

Sure, I knew there would probably be some hesitation on his part before the reality of the fact sunk in.

(It’s a little like dropping a bomb.)

I accepted the fact he’d have lots of questions. Or at least, I hoped he did — and showed some interest.

I also needed time to reassure him. (No. I’m not going to die.) Tell him about epilepsy. Educate him.

Yes, rejection is always a possibility. But so is it with anyone.

You don’t have to have epilepsy to be rejected.

Although at times when I was having a “pity party,” I considered myself a complete and total “reject.”

I think the key is honesty.

If this relationship is going to go any further, he has to tell me honestly what he thinks.

For me, that shows respect. Even if he can’t deal with it.

After that, it’s easier to get intimate.

No more secrets. No more holding back. Except for the little problem of sex…

Dilantin did me no favors. I have to admit, I was a bit numb and dumb.

But with patience and perseverance, you can accomplish most things. Even an orgasm!

And like anyone else, I had great love affairs and duds.

Them’s the breaks. I had to put on my “big girl panties” and accept that not everyone is going to love you. Even if you love them.

Epilepsy or not.

The first boy I ever loved, faded in and out of my life for ten years. Wherever I lived (even in Lake Forest, Illinois), he would find me.

One minute he wanted to marry me. The next minute he said the sex wasn’t good enough.

Geeze. Just make up your mind!

Did I consider ending it? Noooooo.

Even when he showed up the first time I was engaged — to somebody else.

(I was engaged three times. Somewhat like the “runaway bride,” but I didn’t quite get to that point.)

But there were some wonderful nurturing relationships in which I not only loved but matured emotionally.

Those were truly the magic moments. To love and be loved. Unconditionally? No. But hey, you can’t have everything!

Then unexpectedly, love slipped through the door…

I met a guy at work who became a buddy and we started hanging out. You know, lunch and stuff.

And he made me laugh till I couldn’t catch my breath.

And then the first time I was in his apartment, he was making drinks and I had a flaming seizure. I figured: “Oh no. Here we go again.

He was unbelievably caring, gentle and kind.

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).

But, I wouldn’t exactly call our dating days “romantic.”

Our second date was at Arby’s where I instantly spilled a giant root beer on my jeans.

The third date, we spent at the Laundromat, because those were the only jeans I had.

The next date, we argued about a pair of shoes I was buying. (I hate to admit it, but he was right. They were a piece of crap.)

But we did fun things too. Like go to a street fair, movies, read poems out loud to one another. (We’re both writers.)

And eventually, things evolved. Ironically, without any expectations or preparations.

We were simply in love.

Good buddies who happened to love each other also. With FULL disclosure. And many seizures, too.

Six weeks later, he called and asked me to marry him.

(No, he wasn’t a chicken, I just happened to live 350 miles away. It had been a temporary freelance job.)

I said: “No.” I was terrified. I kept saying “No.”

I wouldn’t know a good marriage if it bonked me over the head. I came from a fractured family and every member of my extended family was divorced. Easiest way to not get divorced? Don’t marry.

Finally, it was time to say, “yes,” or “bye-bye.” And you can guess the rest. A year and two days after our first date, we got married.

It’s the real deal…unconditional love. Thirty-seven years of it. (With a few bumps in the road along the way.)

I write him love notes every day.

Now, isn’t that romantic?

 

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14 Comments »

  1. You need to tell others ( potential partners ) about Epilepsy from day 1. If they have a problem with that, then they aren’t the right person for you.Simple as that.

    Liked by 1 person

    Comment by brycerae — May 12, 2017 @ 6:29 PM

  2. As I was tested by ME over 4 years ago, I did not want to be rejected after 3 to 6 months if the relationship, with what I thought was my dream gal for life was to be for me. I told her the on the 1st date, and she said the most kindest of words a man with seizures all his life would ever dream of hearing, from really a complete stranger who I knew nothing about. Less than 30 days & 3 dates, was all it was worth, as I know she did not want the baggage of maybe her living with a future husband seizure life. At least i was honest, as I cared for her too much for her to expect to be with a man like myself all the rest of her life, if she knew about my health condition sooner than later. A future married life no longer includes WORSE, or SICKNESS, or BAD TIMES or POORER, until death. You better be perfect, or else have someone like JOBS wife, who told him,,”Curse God and die”.

    Like

    Comment by C D — May 12, 2017 @ 7:45 PM

    • Oh C D, my heart breaks for you. What a disappointment!

      But sometimes, I didn’t even get to 30 days, even when I thought I had the “trust”. 😦

      Like

      Comment by Phylis Feiner Johnson — May 12, 2017 @ 8:05 PM

  3. Wow, what an incredibly honest, vulnerable and invaluable article. This is a subject that is so taboo. Thank you for addressing it and sharing your positive and wonderful story along with the realities.
    I always used to tell people pretty much immediately. I always told them that this is the situation, if you can deal with it, great but if not then walk away now. I chose this way purely because I never wanted to get attached and then have them walk away but perhaps more importantly self preservation. It’s so interesting to learn how different people handle such situations.
    Congrats on your thirty seven years!

    Like

    Comment by Freya Radlein — May 12, 2017 @ 8:51 PM

    • Thanks Freya. I never had the courage that you and Bryce had. Although, with my husband, I had no choice! 🙂

      Liked by 2 people

      Comment by Phylis Feiner Johnson — May 12, 2017 @ 8:55 PM

      • I’m not sure if courage is the right word, I don’t feel that there’s a ‘preferable’ way. Everybody has to approach it in the way that’s right for them. But whatever and whoever it may be, there’s no getting away from just how difficult that conversation is. Another great post!

        Like

        Comment by Freya Radlein — May 12, 2017 @ 9:05 PM

  4. Thanks Freya. No way around it. It’s a difficult and personal decision. One that probably depends on whom you are “addressing” — in what context of situation.

    I mean, I don’t know when I would have told my husband. We worked in the same place and I wasn’t crazy about my situation becoming public. Especially since I was there as a freelancer.

    But I guess, fate played its own hand! 🙂

    Like

    Comment by Phylis Feiner Johnson — May 12, 2017 @ 10:42 PM

  5. Thank you for this piece! I have struggled on relationships/future family the last two decades. My big worry is passing my genetic condition on to a child. In addition to epilepsy I have Neurofibromatosis which is a genetic condition due to a mutation of the 17th chromosome. With all I’ve been through because of that consisting of brain tumor, tumors all over my body, the treatment I had growing up and in school, I fear any children I may father would have to deal with the same (pardon my french) crap I had. When I younger I WAS upfront with the ladies I dated about my epilepsy. To my amazement it didn’t scare them away.

    Like

    Comment by Travis — May 13, 2017 @ 10:40 AM

    • Good for you, Travis. You are a brave man.

      Like

      Comment by Phylis Feiner Johnson — May 13, 2017 @ 12:26 PM

      • Phyllis, it’s amazing to see a post on this. I have lived with epilepsy for 30 years now. 26 of those with my husband. Thankfully most of that time, my seizures have been controlled (by Dilantin) and so I didn’t HAVE to tell people. Until I started getting serious with my husband and even then I didn’t spill the beans until close to a year into our relationship (he went to school 3 hours away from me so we didn’t see each other on a daily basis so I would just take my pills when he didn’t see). I don’t know if the main reason I told him was not to have any secrets or bc I saw us getting serious and wanted to give him the power of choice (esp having to do with children..). Anyway, he stuck around. We dated for 4 years while in school. And just celebrated 22 years of marriage (which yielded 2 amazing sons:)
        Thanks for creating this space where we can talk about a subject that’s so close to our hearts and daily lives, but is hardly ever talked about! KUDOS to you!

        Like

        Comment by Angela — May 15, 2017 @ 8:51 AM

  6. Angela, we live with epilepsy and that’s why I try to write about all aspects. Even personal ones and those that are hush-hush.

    Kudos to you for your honesty and the courage of “coming out of the closet”! 🙂

    Like

    Comment by Phylis Feiner Johnson — May 15, 2017 @ 11:19 AM

  7. Personally i don’t think on Day 1 of meeting anyone that they should know about your weakness. Once you get to know them and become better acquainted i think is the best time to come out with it.
    Otherwise your sure to lose that date and never get a second one. Been there done that too many times. You get that damaged goods feeling. Or could it be those woman just wanted a free dinner. hahaha

    Like

    Comment by Zolt — May 16, 2017 @ 11:46 PM

    • Zolt, I don’t consider it a weakness. Maybe a vulnerability, but it’s part of what and who you are.

      Granted, I only told Arthur on our first date because I had a flaming seizure.

      But, in retrospect, I think I would have told him sooner rather than later, so he’d know what he was “getting into”.

      If he fled for the hills, I guess he wasn’t for me. 😦

      Like

      Comment by Phylis Feiner Johnson — May 17, 2017 @ 8:09 AM


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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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