Epilepsy Talk

Epilepsy and Romance — Getting Personal | December 19, 2018

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-eight 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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  1. Great love story!
    My son is 18 and is on Dilantin. (For the last year)
    Do you still take Dilantin or did you find something else that worked well for you?
    Thank you,

    Liked by 1 person

    Comment by Tami — December 20, 2018 @ 12:13 AM

    • Happily, I haven’t been on Dilantin for decades.

      I take Lamictal and I’ve been 99% seizure-free for 10+ years!


      Comment by Phylis Feiner Johnson — December 20, 2018 @ 10:28 AM

      • I can agree about Dilantin. I was on it for 3 months back in ’82. Read about the side effects, long-term and short-term, and ask if another would be appropriate. (I’ll try to read poetry out loud).

        Liked by 1 person

        Comment by Frank — December 20, 2018 @ 2:57 PM

      • That is good to know! He was on Trileptal and then that quit working. He needs a sodium channel blocker as that is the specific type of AED that he responds to. I know the side effects are not good but for now that is what his neuro wants him to keep taking.
        I am praying for a better med and some day no meds and still seizure free.
        For now he is in his first year of college and doing well.
        Merry Christmas everyone!

        Liked by 1 person

        Comment by Tami — December 20, 2018 @ 7:06 PM

  2. I take Dilantin. But I had a operation January 2017.no more epilepsy.did take topamax and Dilantin.but now only Dilantin,had no more epilepsy since the operation.

    Liked by 1 person

    Comment by Rodney minnis — December 20, 2018 @ 1:48 AM

  3. Thank you for sharing your inspiring love story.
    It’s uplifting to know that the power of love conquers the ordeals that we encounter in life, hard times revealing true friends.
    It’s pleasing to discover the relationship built on hard times are made to to encounter & overcome adversities.
    Happy Holidays!

    Liked by 1 person

    Comment by BahreNegash Eritrea — December 20, 2018 @ 11:30 AM

    • Gerrie, Thank you so much.

      There has certainly been adversity.

      Like the time I almost lost my life.

      For weeks, Arthur sat beside me in ICU, through 2 heat attacks, and the uncertainty whether I would make it or not.

      It took me almost 3 months to even find my keyboard.

      And that life-changing experience made me decide that it was time to quit my advertising job and pay back.

      Almost losing your life can certainly change your priorities.

      But it was then, with Arthur’s help, that Epilepsy Talk was born.

      And he continues to be my biggest supporter and fan.

      Wishing blessings to you and your loved ones for 2019 and beyond.


      Comment by Phylis Feiner Johnson — December 20, 2018 @ 12:27 PM

  4. Phylis, thank you for going to personal places that probably none of us have talked about or talked about very little. On Epilepsy Talk, the medical information is valuable and the personal issues you address are beyond value.

    As per “epilepsy, romance and getting personal” being one of those personal issues, my wife found out that I had had my first seizure in our 24th year of marriage – the year it happened. I did not know what had happened but could only describe it later that day as “an episode.” There are probably some of your readers who developed epilepsy well into their romantic relationships. Four neurosurgeries, endless rounds of AEDs, two ER visits, countless seizures, and 33 years of marriage later, she’s still with me in a romantic relationship after we vowed to one another “in sickness and in health.”

    Thanks for founding Epilepsy Talk for people who need to be heard. You and your husband do something so positive for people who are usually treated so negatively. Bless you. George

    Liked by 1 person

    Comment by George Choyce — December 20, 2018 @ 7:31 PM

    • George & Phylis,
      Thank you for sharing your beautiful stories, inspiring many of us to discover that there’s more to life than just Epilepsy & seizures, hospitals & medications.
      Deeply knowing & personally living through the hardships of Epilepsy, your heartwarming stories brings tears to my eyes.
      I admire your strong relationships, standing solid together overcoming formidable odds, for I know it takes strong partners, families & friends standing solid together to make it through the ordeals of the medical hardships.
      Thanks to Arthur’s strong commitment, & devotion to stand by you, we got a place to come home to share our struggle in Epilepsytalk.

      Liked by 1 person

      Comment by BahreNegash Eritrea — December 21, 2018 @ 7:03 AM

  5. Thanks Phylis, further valuable reading from you, enjoy your xmas and new year.

    Liked by 1 person

    Comment by Donald Nairn — December 20, 2018 @ 9:54 PM

  6. Don’t forget that we are ALL in this together.

    In a way, I feel “married” to Epilepsy Talk and you.

    “In sickness and in health, for better or worse.”

    Bless you all, I love you.

    YOU are the reason I get up in the morning.

    (And Arthur too, of course!)


    Comment by Phylis Feiner Johnson — December 21, 2018 @ 8:15 AM

  7. Romance, emotions, moods, etc. I wanted knowing more about. And you really help. Thank you!

    Liked by 1 person

    Comment by Thuam Siam Ngaihte — January 29, 2019 @ 11:35 AM

  8. Glad to hear it!


    Comment by Phylis Feiner Johnson — January 29, 2019 @ 11:55 AM

  9. Oh my gosh, I’m so glad that story ended with you marrying that guy. 🙂
    I so appreciated this post, particularly as a seasoned epileptic myself! Thank you SO MUCH for Epilepsy Talk!

    Liked by 2 people

    Comment by Alphabet Ravine — February 4, 2019 @ 8:43 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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    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.

    View Full Profile →

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