Epilepsy Talk

Epilepsy and Romance — Getting Personal | January 14, 2022

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. Forty-two 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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6 Comments »

  1. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — January 14, 2022 @ 10:17 AM

  2. I love reading your romantic story as it gives so many hope. Hope that they to will find love despite having E.
    It’s something we all long for and having E makes you think you are not worthy. It’s just not true!
    My son Grant is 21 and is on Dilantin and had his first serious girlfriend and he was in love. They just broke up and he is devastated but it wasn’t bc of his E. But in his mind he thinks he won’t find anyone else.
    I know he will.
    Praying for every person that reads this. Hang in there and don’t give up hope.❤️

    Liked by 1 person

    Comment by Tami — January 14, 2022 @ 2:15 PM

  3. I r been lucky too. I always told guys first or second date and never felt rejected because of my seizures.. ❤️ Married 21 yrs and have 2 beautiful boys who are support and care about me. I’m a very lucky lady. I always felt it was my responsibility and opportunity to educate the public. And I have great drs.

    Liked by 1 person

    Comment by Janet deardorff — January 14, 2022 @ 2:33 PM

  4. Arthur got to have the heart of an ocean, who can see far beyond the trials, tribulations & limitations of mother nature.
    Thank you for sharing your inspiring story.
    Watching American rescue videos on YouTube, the Ambulance technicians coming to the rescue of another epilepsy victim knocked out in public restaurant struck by seizure, I broke down in tears when I saw all the people around the man wanting to help & his wife standing by him telling the Ambulance technician “I’m epileptic too”.
    The whole episode goes to shows, romance is far more powerful than neurological hardships.
    It’s gratifying to know we are NOT alone.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — January 14, 2022 @ 5:04 PM

    • Yes, Arthur has the heart of the wide blue sea. Or as my nana said: “Arthur has a heart like a hotel, with room for all!”

      Love trumps all.

      Like

      Comment by Phylis Feiner Johnson — January 14, 2022 @ 5:08 PM

  5. Who can test or certify that an epileptic is “normal” for financial purposes. Thanks.

    Like

    Comment by Susan — January 15, 2022 @ 11:03 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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