Epilepsy Talk

Epilepsy and Romance — Getting Personal | April 29, 2020

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 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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77 Comments »

  1. Thank you for being “real”. My daughter has epilepsy, and we read your columns together. It opens up conversations that we wouldn’t have otherwise had. Also-it shows her a “human side” to the condition and the feeling that she isn’t alone.

    Liked by 2 people

    Comment by AB — April 29, 2020 @ 1:38 PM

  2. We’re all in this together and I hope you can express your concerns, fears, experiences and share them.

    Believe me. They are for the common good.

    And I think here, you’ll find a group of compassion and caring.

    No judgement, just help.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — April 29, 2020 @ 1:50 PM

  3. Add your personal life to your medical condition and you have a book! (movie?)

    Liked by 2 people

    Comment by Paul — April 29, 2020 @ 2:22 PM

  4. Phylis, You brought tears to my eyes & I kept looking for napkins trying to clear my eyes to read to the last end of the article & your captivating story.
    I admire & respect the brave man who understood your condition & kept asking you to marry him from 300 miles away, bearing the burden of the distance & long journey & stood solid strong by your side for 44 years sharing your medical hardships & romantic relationship.
    You’re very fortunate that Arthur is certainly a very rare gem to keep for a lifetime.
    In the “modern era” of instant gratification, revolving doors & multiple divorces, I wonder how many marriages are staying together for too long, without Epilepsy wrecking the “matrimony”.
    Now you know why I always ask you to write a book sharing your lifetime experience with epilepsy for the rest of the whole world to inspire & treasure.
    Thank you for restoring my faith in humanity.
    Gerrie

    Liked by 2 people

    Comment by BahreNegash Eritrea — April 29, 2020 @ 4:14 PM

    • Actually, divorce gallops in my family. I’m just about the only one still married, including my cousins.

      So, it really IS a miracle. A wonderful marriage to a fabulous man. One who stands besides me through, literally, the best of times and the worst of times.

      I know that I am truly blessed.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 29, 2020 @ 4:36 PM

      • Lol that sounds almost like me!! It’s kind of funny to hear my biological reproducer and a large portion of my family pass their judgements if and when me and my husband have differences. I rarely tell my family because their response is always “leave him”!! My response is always to shake my head at them!! And politely state “I am not you, but thank you for your opinion”. I won’t lie though I have slipped a couple times and maybe got a little bit more expressive (in a very calm low voice way with them) and responded I VERY BLUNT WAY WITH LITTLE WORDS!! 😊. Kind of helps to have been and still am married for decades and be one couple of VERY FEW IN MY FAMILY!! So I can speak to them from experience 😊

        Liked by 1 person

        Comment by Kathy S.B — May 4, 2020 @ 1:25 AM

  5. I love this story! Thank you for sharing!

    Liked by 1 person

    Comment by Tami — April 29, 2020 @ 4:37 PM

  6. P.S. I am already IN a book. The famous neurologist’s “VISIONS — The Inspirational journeys of Epilepsy Advocates.”

    But only towards to end of the book about “Writing and Arts”.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — April 29, 2020 @ 4:44 PM

    • Thank you for the information about your book & I’m ordering it online right away to learn more about the challenges to live with epilepsy & encourage my epilepsy support group to buy & read your courageous lifetime journey with epilepsy.
      As you have been told by many grateful people before & may have known already, it takes giants like you to advocate, inspire, uplift & encourage many helpless victims of adversity to overcome & survive the medical hardships they have come to encounter in their lifetime.
      Thank you for your dedicated commitment to help the victims of epilepsy.
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — April 29, 2020 @ 6:25 PM

      • The book is wonderful and talks about advocates from all walks of life. 50 of them, to be precise.

        We were given a template to follow (you have to have some way to temper 50 people’s experiences.)

        Yet, I think the stores came out as very personal, arresting and inspiring.

        A real boon to the epilepsy community and those that support it.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — April 29, 2020 @ 8:03 PM

  7. So what IF a person you are interested in just heard a question like this,,, Would you be as interested in me if I tell you that I have a pre-exsisting condition ?,,, Then if that person would say NO or YES you tell that person from least to worst in order write down the condition you think you can handle & not handle well. The problem would be if they would not think of seizures / epilepsy & you see that is not on their list,, then WHAT do you do ? If that is on their list then you can say what you have to them & see their thinking change based on their answers & order they list what they do, based on their NO & YES answer. We would be fair & do they same for them as well. Anything related to the brain & heart I can deal with. Mainly because the bible says in proverbs,, As a man thinketh in his heart, so is he.

    Liked by 2 people

    Comment by James D — April 29, 2020 @ 6:55 PM

  8. because i have so many ‘moments’,, people think i am rude, spacey, ignoring, or stoned, so i feel like new friends have to know right away. if i don’t tell them, i get in trouble..just like in school! but if i do, yes, its awkward.i prefer that, to people writing me off as stuck up or stoned. i am way past wanting romance, but all this applies to any new friends , too.

    Liked by 2 people

    Comment by jerrie yehling — April 30, 2020 @ 10:00 AM

    • Jerrie, I agree with you. Full disclosure is best. (Although I had no choice with Arthur, having a flaming seizure on our first date!!!)

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 30, 2020 @ 10:05 AM

    • Jerrie ,,, Everyone is not made from the same clay.
      My wife learned about my epilepsy about the same time I did. Therefore, she made the choice to stick it out with her old man.
      As for friends, while being honest & forthcoming may cost us a steep price, having many petite & grand mal seizures in front of all my friends through out the last 20 years has taught me important lesson that which are the true friends who’re willing to stick out their neck for me & who’re the fake once who’re just going along for the ride.
      Therefore, weeding out the good from the bad apples simplified my choice, whom to keep closer to my heart & whom to just play around like toys.
      Therefore, don’t give up. Harvest what you sow.
      And you would be surprised to find out that there are good compassionate people out there who appreciate your honesty, integrity, company, loyalty & deeply care for your wellbeing just like I did.
      Best wishes!
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — April 30, 2020 @ 11:27 AM

  9. Phylis, I’m sure you’ve seen it before in writing about how wonderful and how brave you are … well, you can’t see it enough when you have epilepsy – Phylis, you’re wonderful and brave. So, thank you on behalf of some other people who have epilepsy to take us into such “taboo” subjects like romantic, physical relationships between people. Like many, I did not have a clue that I had epilepsy until my first seizure in 2009. I called it an “episode.” I’ll spare the details, except to write that my church – yes, I’m a priest (not Catholic) – asked me to resign; my wife decided to keep me. I embarrassed them; she took her marriage vows of “in sickness and in health” quite literally. So the romance has grown and other parts of our relationship simply take more time; nevertheless, they are just as satisfactory or more so. Let’s leave that for reader imaginations to sort out. Epilepsy has changed so much in our lives that hopefully, for most of us, the romance and the affection still remain if they are willing to be open to some kind of transformation and not simply get stuck in the rut of a routine of abstinence. Where does it go from here? I don’t know. But hey, I’ve been saying that quite a lot since the seizures began. In 35 years of marriage, however, everything gets stronger in a blessed relationship like that. Everything.

    Liked by 2 people

    Comment by George Choyce — April 30, 2020 @ 2:43 PM

  10. I know that I am blessed and I am grateful every day.

    Not that I’m necessarily a role model, just another person, trying to muddle through like the rest of us.

    But yes, I do believe that (not to be trite) “love conquers all.” And “in sickness and in health” is not to be taken lightly.

    You just have to find a person who feels the same way.

    And believe.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — April 30, 2020 @ 3:31 PM

  11. What advice would you give to youngsters who are just starting to date? Anyone?

    Liked by 2 people

    Comment by HoDo — April 30, 2020 @ 4:36 PM

    • Actually, I would advise full disclosure. That way, you learn where you stand in the beginning.

      And if the person is (still) interested, you can guide them through first aid, what to expect and what he/she can do to help you.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 30, 2020 @ 5:19 PM

      • It annoys me exceedingly that the burden of education continues to fall on the disabled.

        Liked by 2 people

        Comment by HoDo — May 1, 2020 @ 11:32 AM

    • I just told whomever I dated. Lol mind you there was too many lol 😂. I was and still kind of am a “tomboy” so I wasn’t really into that type of relationship. It just kind of happened!! Lol 😂

      Liked by 1 person

      Comment by Kathy S.B — May 4, 2020 @ 12:19 AM

  12. The dating issue could probably lead to some other subjects as well. For instance, one of my anti seizure meds called Clonazepam or Klonopin lists NO ALCOHOL in its literature. My neurologist insisted on that. Essentially, having an alcoholic drink could increase the numbing effects of the Clonazepam. Once was enough for me. After that experience, I stopped my social drinking “cold turkey.” But let’s be honest – alcohol will simply be a part of some of the youth culture, as it is in so much of the adult culture. No matter what the age, some people know how to take advantage of that. You would hate for the experience of a teenager with epilepsy who is getting personal with their boyfriend or girlfriend to be negative for them, because it is associated with – of all things – their anti seizure medication! It’s challenging enough to live with epilepsy. In your own words of “just starting to date” is a better time to tactfully discuss dating, epilepsy, and alcohol, than before something gets out-of-hand on one of those dates.

    Liked by 2 people

    Comment by George Choyce — April 30, 2020 @ 8:22 PM

    • Being young teenager is a great time & excellent opportunity to learn how to navigate through social storms that is going to carry you for a lifetime.
      Therefore knowing alcohol can certainly trigger seizures, I would think consuming non-alcoholic beverages & making cautious decisions may help ease the social pressure & temptations to get drunk & risk a whole lot more than just few inconsiderate friends.
      Protecting your wellbeing comes before pleasing your friends for acceptance.
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — May 1, 2020 @ 12:29 AM

      • Alcohol

        There are two questions that have to be considered when the question of alcohol use and epilepsy comes up. One is the effect that alcohol could have on the medicines used to control seizures. Alcohol can be dangerous when mixed with sedative drugs and can cause coma, or even death. The other question is whether the alcohol itself will cause seizures.

        Large amounts of alcohol are thought to raise the risk of seizures and may even cause them. When you drink alcohol, it may temporarily reduce seizures for a few hours, but then increases the chances of a seizure as the alcohol leaves your body.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — May 1, 2020 @ 9:58 AM

      • To put it more generally, the seizing brain does not like big changes. Alcohol entering or leaving the brain is a big change.

        Liked by 2 people

        Comment by HoDo — May 1, 2020 @ 11:18 AM

      • I WHOLEHEARTEDLY AGREE!! Thank you Gerrie 😊💕

        Liked by 1 person

        Comment by Kathy S.B — May 4, 2020 @ 11:05 AM

  13. And when it comes to getting personal and romance and all that comes with it (as this post has been about), you don’t want anyone who is beginning to date coming out of a hangover the next morning and realizing that a very big change has happened to their body because their seizing brain couldn’t control it. This can sound rather depressing, but it does happen. You are in a very important position to talk with them about this reality before it might happen. If not you, then please get someone else to talk with them.

    Liked by 2 people

    Comment by George Choyce — May 1, 2020 @ 11:39 AM

  14. George, a hangover might be a young person’s last worry. What concerns me is the “what if” situation. All of us with seizures, I assume, have this, where we say in various situations “what if I have a seizure now”. Waiting for the subway, on a bus, at a party, restaurant, etc. A young, dating person is especially vulnerable on a date with someone new, They need to live and explore life and lets hope alcohol, drugs or a creepy person doesn’t intrude, hmm. They need to obtain strength and be up front about issues,too.

    Liked by 2 people

    Comment by skolly9 — May 1, 2020 @ 8:41 PM

  15. And yes George, I am ashamed of your church for “banning you” so to speak. What century are they in? That’s not love nor inclusion. Wow.

    Liked by 1 person

    Comment by skolly9 — May 1, 2020 @ 8:56 PM

  16. Well Phyllis, the Nazi’s were “Christian’s”, too, were they not?

    Liked by 1 person

    Comment by skolly9 — May 1, 2020 @ 9:07 PM

  17. Yes. And I’m a “Jew”.

    (Were you on board when a — former — member, went on a tirade about lousy “Jew” doctors?)

    I calmly told him I was a “Jew” and that this group would tolerate no discrimination, defamation or character insults.

    Ten people then promptly went down his throat. (Or otherwise.)

    I was sooooo proud of my Epilepsy Talk family!

    Like

    Comment by Phylis Feiner Johnson — May 1, 2020 @ 9:14 PM

  18. Well, skolly9 and Phylis, can I hear an “Amen” to your comments. Not to be trite, those who hear my story in great detail are so ashamed or in disbelief. Additionally, even though I read the posts, yet do not always respond, this is a place a tremendous support. I think that you, Phylis, have taken so many of us where we needed to go in this column. It is personal. I mean, how many times have you read about epilepsy combined with romance-getting personal? Oh, Phylis, I also believe you have a book in you. Go for it!

    Liked by 1 person

    Comment by George Choyce — May 1, 2020 @ 9:18 PM

  19. And George, speaking of the devil (!) why have you kept YOUR book a secret?

    It is now residing in the Epilepsy Foundation of Eastern Pennsylvania’s library — for all to appreciate and learn from.

    Like

    Comment by Phylis Feiner Johnson — May 1, 2020 @ 9:22 PM

  20. Guilty as charged. But to take the cake, I cannot make too much $ while on disability or I loose it. Just sent off all my forms to my new Insurance Company, along with my doctors’ evaluations, and a picture of myself from the Epilepsy Foundation of Southeast Tennessee’s Facebook page to prove I’m disabled. I finally found a church that would let me volunteer for about five hours a week, then the pandemic came about, and a lot is up in the air. So, let’s write about epilepsy and romance and getting personal. It might just encourage others. Thanks.

    Liked by 1 person

    Comment by George Choyce — May 1, 2020 @ 9:44 PM

  21. Yes I agree 😊🦅🙏🏼❤️

    Liked by 1 person

    Comment by Kathy S.B — May 1, 2020 @ 10:56 PM

  22. I have been blessed to have maintained a stable, loving relationship for many years, though not without challenges, I must say. It’s certainly never easy to have multiple disabilities and without love and support it would have been horrible. However, I’ve also been a medical activist for decades, and the issue of epilepsy, it’s ongoing stigma and secretiveness is so hugely infuriating. Good, solid citizens being forced to quit jobs, not receive insurance, be banned from churches, be overly drugged, ignored. Wow, people, what the F*** does it take for change?

    Liked by 2 people

    Comment by skolly9 — May 2, 2020 @ 7:46 PM

  23. It takes us. Advocating, teaching, learning, loving, caring. Speaking up and speaking out. All of the things YOU are and YOU do.

    If there were more people like you…the world would be a more patient, kinder, supportive, and sensible place to be.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — May 2, 2020 @ 9:21 PM

    • The so called civilized & enlightened society condemning the disabled for second class citizens & the rivers of education drying out before delivering the radical social changes to accommodate the wellbeing of the disabled citizens of the society, we got along way to go to make this world a better place for all to live in equal terms.
      Instead of understanding, helping, supporting & educating the victims of medical adversity on how to cope with their everyday struggle to survive & overcome the struggle against the obstacles of the disabled members of society, discriminating & alienating the victims of medical hardships is certainly unforgivable crime society must be held accountable for.
      Therefore the march must go on challenging the injustice society has been imposing upon the disabled citizens & tolerating for centuries.
      Keep up the good work you have been committed for, our grandchildren will certainly get to inherit, treasure & benefit from & appreciate the selfless devotion you have been dedicating for & make this world a better place to live.
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — May 3, 2020 @ 1:20 AM

    • It’s your optimistic drive to educate the rest of the world & speak for the victims of epilepsy that has been pulling many of us to this forum & share our experience with epilepsy & learn from each other on how to cope with all the social & medical hardships that’s connected to epilepsy.
      Therefore, this world needs more optimists like you speaking out for the voiceless for social justice to prevail.
      Thank you for your tireless hard work advocating for the victims of Epilepsy.
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — May 3, 2020 @ 12:49 PM

      • I thank all of you as well 😊. Now this is “A FAMILY OF FRIENDS” 🙏🏼🦅💕. Optimism is needed by all of us to give to one another and share with one another especially when it is NEEDED THE MOST!! Thank you Phylis and All 😊🙏🏼🦅💕

        Liked by 1 person

        Comment by Kathy S.B — May 7, 2020 @ 11:58 PM

  24. Gerrie, your praise means a lot to me.

    Like

    Comment by Phylis Feiner Johnson — May 3, 2020 @ 1:15 PM

  25. Oh Phylis, thank you for your ongoing optimism! Your blog and consistent encouragement means so much to all of us! And congratulations on being in a book! George, please tell us more about your book, as well! Gerrie, are you writing one? I’m considering it, but wouldn’t know where to begin and, stay anonymous!! So many incredible people out there with incredible stories to tell, I daresay!

    Liked by 2 people

    Comment by skolly9 — May 3, 2020 @ 5:08 PM

    • Actually, my book was going to be about other peoples’ stores. But it got so complicated. Even with giving people’s initials, they didn’t want anyone else to know. People weren’t exactly lining up to tell their stories — anonymous or not.

      And then there would of been all this legal beagle bull. It was just such a cumbersome and impossible task.

      Like

      Comment by Phylis Feiner Johnson — May 3, 2020 @ 5:28 PM

      • Yes cumbersome may have been a bit too much to handle for me too!! But perseverance always pays off! 😊

        Liked by 1 person

        Comment by Kathy S.B — May 8, 2020 @ 12:02 AM

    • Why stay “anonymous” Skolly9? There’s NOTHING TO BE ASHAMED OF!! We are all who we are all meant to be 🙏🏼🦅😇💗😊

      Liked by 1 person

      Comment by Kathy S.B — May 8, 2020 @ 12:00 AM

  26. That’s a shame, Phylis! Maybe that’s why Fiction is so popular!!

    Like

    Comment by skolly9 — May 3, 2020 @ 5:37 PM

  27. Let me throw this out there when it comes to tying these two subjects of epilepsy and romance/ getting personal to publication. I’m reading a book about the general subject of disability and not so much epilepsy in particular which categorizes the disabled – true or false – as a minority group. That’s something to think about! I do not want to plagiarize the author’s comments, so I’ll summarize them. She writes that sadly, very sadly, it is the overall negative societial understanding that intermarriage between the disabled and non-disabled will never work because the disabled are just not normal and would be the one who would inevitably doom the relationship. My comment is that we who have epilepsy are people too. It’s going to be a different kind of romantic and getting personal relationship, but it might be even better than normal. What do you all think? Thanks.

    Liked by 2 people

    Comment by George Choyce — May 5, 2020 @ 12:11 PM

    • It may be that some people hold the belief that the disabled spell doom to a relationship. Those same people may not realize that between one moment and the next, they, too, could become disabled. Where the responsibility for the “doom” lies depends on the people and the culture involved. All of this can change. We can change it.

      Liked by 1 person

      Comment by HoDo — May 5, 2020 @ 12:19 PM

    • I think you’re spot on, George. At least from my personal experiences.

      Like

      Comment by Phylis Feiner Johnson — May 5, 2020 @ 12:37 PM

    • Excellent point George,,, Disability is NOT litmus test neither rating list for romance.
      It takes two to tango.
      While misinformed society may have a lot of misconceptions about “disability” & draw barriers to romantic relationships with the disabled, sharing deep feelings for each other & nurturing strong caring hearts, minds & soul overcomes the forbidden love.
      Love knows no disability, barriers nor boundaries.
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — May 5, 2020 @ 3:10 PM

  28. HoDo, I think disabled or “doomed” is a relative thing. And how a personal reacts to it is individual.

    As you said, it can happen to anyone, at any time. It’s how you deal with it.

    I like to think that we set an example. However, we can only change the world, one by one.

    Like

    Comment by Phylis Feiner Johnson — May 5, 2020 @ 12:41 PM

  29. And while the honest comments for this post of romance-getting-personal keep coming, let me add another one. Thankfully it is only one I have heard about yet never experienced. It has to do with more of the getting personal part of romantic relationships. When we have that “Scarlet E” of epilepsy some people think it is like the modern leprosy; therefore, it is contageous. Result? No getting personal. That’s just another part of being someone with epilepsy that most people will never understand. It can make it more lonely for some people with epilepsy than it already is. But maybe having that potential relationship never even start saved us from a whole lot of hurt on down the road.

    Liked by 1 person

    Comment by George Choyce — May 5, 2020 @ 2:09 PM

    • Well, I disagree with my whole heart. (Literally!)

      Having not loved is akin to having not lived.

      Yes, there are all kinds of love, but I think everybody needs a “someone” who cherishes them.

      As was said, there are compromises and even sacrifices that may come along with the package.

      But foolishly, I do believe that real love can conquer all. If you’re willing to take the chance.

      I finally did (I was engaged three times), sum up the “courage”.

      Happily Arthur was willing to take the chance and finally, so was I.

      Like

      Comment by Phylis Feiner Johnson — May 5, 2020 @ 3:43 PM

      • While epilepsy may had taken away my independence, economic resources, social status & few friends, Epilepsy failed to drive away the most precious woman I had ever loved since high school, strongly holding on to the 30 years matrimony I had sworn to uphold before I had known anything about Epilepsy.
        Therefore, you don’t need to go too far to find out it’s blessing to know epilepsy does NOT break strong hearts when Arthur has been standing shoulder to shoulder by your side for 44 years.

        Gerrie

        Liked by 1 person

        Comment by BahreNegash Eritrea — May 5, 2020 @ 4:51 PM

    • George.
      As you can notice it by now, you’re NOT alone.
      For many members of this informative website, joining this forum for support & associating with local support groups has been very helpful means to counter the struggle, social misconception & cruel isolation related to epilepsy.
      Therefore, it takes determined drive to break the chains of social barriers.
      Sharing your experience & interest with those who fit in your lifestyle can certainly make your journey more easier.
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — May 5, 2020 @ 3:56 PM

  30. Phylis, thank you for starting off this post that is pulling out personal stuff in so many of us. (Not that the others haven’t.) It is just when you’re writing about those relationships with romance and getting personal in them, it’s going to bring forth smiles and tears, perhaps both.
    Keep this challenging and encouraging website up. Change us and we can change others who can then change others. Thanks again.

    Liked by 1 person

    Comment by George Choyce — May 5, 2020 @ 4:30 PM

  31. George, it saddens me to hear what this author says about disabled people and relationships. As a long time advocate of people with disabilities I would say I’ve seen disabled people have successful relationships both with others who are disabled as well as with those who are not. The author’s ideas are very antiquated. What it does take is empathy; the ability to try and see things through that person’s perspective, in “their shoes, so to speak” That involves a lot of open communication.

    Liked by 1 person

    Comment by skolly9 — May 8, 2020 @ 4:49 PM

  32. Skolly, I think you’re perception is right on the mark. The book, probably very progressive at the time (1994 publication), has antiquated attitudes for sure. I was in that indefinable emotional place of mad and sad that many of us find ourselves in at the time when I read her quote. She was essentially writing from her research on disability that marriage between people with disabilities and those who are “able-bodied” is strongly discouraged by “societal attitudes.” She then goes into how those “societal attitudes” are that the disabled are the deviants when it comes to “getting personal”. Disabled equals deviant. Antiquated, indeed. As if we don’t have enough to deal with! I, too, try to advocate for the disabled and have been so disappointed in those antiquated attitudes that are sporadically prevalent. My personal, post-seizure experiences are that many people will not want anything more to do with me. Of course, a small percentage will stay on as friends. So those of us blessed to be in a marriage that does not fall apart due to seizures, know of the power of the friendship in their relationship. There is always hope.

    Liked by 1 person

    Comment by George Choyce — May 8, 2020 @ 6:27 PM

  33. Such a wonderful post I came across 👌👌
    If you happen to explore my blog, I just wish something inspiring love/life related you can read. With all love.

    Liked by 1 person

    Comment by Vinisha Panwar — May 13, 2020 @ 8:24 AM

    • Thank you Vinisha. I wish you love and light.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 13, 2020 @ 9:45 AM

    • Vinisha, I echo Phylis’ expression of thank you. I’ve just found your blog and have some grass to cut before the rain sets in and a blog to read when it’s raining outside. Your blog certainly does look to be inspiring love/life related, which those of us with epilepsy certainly need in the ways you’re creatively writing about. Peace to you.

      Liked by 1 person

      Comment by George Choyce — May 15, 2020 @ 9:20 AM

      • Ohh dear, a heart full thanks to you, if my words were able to find meaning in your mind even for few minutes, my purpose is served 💜💜

        Liked by 1 person

        Comment by Vinisha Panwar — May 15, 2020 @ 9:21 AM

  34. You are so authethic and beautiful! You could write a book and I will definitely grab it off the shelves !

    Like

    Comment by Stephanie — May 20, 2020 @ 12:46 PM

  35. Beautiful. Gives me courage to face my condition 😊

    Liked by 1 person

    Comment by Harmony_Reigns — June 4, 2020 @ 11:23 AM

  36. That was romantic! So genuine and not the fake happy kind of ending. That was a legit happy ending and it was also inspiring. I’m glad you could find someone to be there for you always. 💙

    Liked by 1 person

    Comment by J. M. Lilin — June 13, 2020 @ 6:36 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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