Epilepsy Talk

Other Voices…Other Lives… | February 16, 2023

“There were times I asked myself,
‘Is life really worth living?’
Suicide, now there’s a thought,
But would God be forgiving?”

Ed L.

“We were locked up and used as a guinea pigs to try medications in the ‘testing stage.’ Believe me, they didn’t hesitate when it came to try untested medication.

There were times I was pumped so full of meds I couldn’t walk straight, and it usually just made my seizures worse…

If I had a seizure, they would give more med’s and lock me in the seclusion room.

Sometimes if I had a seizure in the seclusion room, a nurse or attendant would come in and slap me around, some used a belt on me.

I still have scares from that, even after 43 years.”

Mike F.

“I remember so much more before I went to college than after. At one time, I was thinking if I hadn’t gone to college maybe would my memory be better. (Yeah right.)

Later, I was lucky to be hired as a first-grade teacher in a year-round school with fantastic teachers and students.

It was a great experience and I actually felt like I was worth something. I was even able to use my experience to teach English as a Second Language.

It just seemed like this was my place to be.”

Lynda M.

“After my fourth child was born, I went into Status Epilepticus and then into a coma. Sometimes, I could hear what was being said, when I was in the coma. I heard my daughter screaming when she found out.

I remember the doctor telling my husband to prepare for my funeral. I got mad and tried to grab the rails on the sides of my hospital bed.

Meanwhile, the doctor was busy talking about his upcoming trip to Colorado, wondering if he should buy a plane or rent one!”

Ruth B.

“It’s been a great life so far, but I’m not done. I’m only 65.

I hope every kid with epilepsy will have a life that’s as fulfilling as mine. Even if they can’t stop the seizures.

Also, I hope that later in life they can adapt to a life with seizures or find a way to stop those seizures from happening.

No two people are exactly alike. All people with epilepsy are different and no two people have the same problems. We can all find ways to enjoy life in our own way.”

Rich S.

“I want to succeed professionally. I want to have relationships. But often opportunities slip away.

For years (and even sometimes I still) I blamed it on the epilepsy and brought myself down. The problem is me having the epilepsy and not the epilepsy having me.

I have to remind myself that if someone is truly a friend, they will accept me.

It is still difficult though, knowing when and how to tell someone, especially a date. I hope someday that whoever he is will not see my epilepsy as weakness, but rather see it as strength for everything I have overcome.”

Katrina K.

“There’s something liberating in being expected to fail. No expectations, no explanations. After all, “you’ll never amount to anything,” you’re damaged goods. So you’re free to fall on your face. Or reach for the stars. I did both.”

Phylis J.

“Being that my seizures started at such a young age, I accepted it as normal. I didn’t really remember life being any other way.

I always had to take pills at breakfast and when I went to bed. This helped me fight the emotional side of epilepsy. I do not question why. I continue, slower at some times, with the day to day life.

I have made a few ‘true friends’ over the years who help. Even if I am 1600 miles away from them, a phone call does wonders.”


Around me, others try to pull me back.
Their begging words implore. Please, please come back.
But I’ve already fallen, body slack,
then stiff and thrashing. I will not recall
my stiff and wildly-thrashing limbs. Recall
belongs to husband, children. Stormy squall
soon passes, not without an icy chill.
The memory, yes, passes, but the chill
holds frozen one more springtime daffodil.

Maggie M.

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  1. Such beautiful expression of people coping up with this terrible condition. Thank you for sharing, all.

    Liked by 1 person

    Comment by RP — February 16, 2023 @ 6:18 PM

  2. I’ve always been happy with my epilepsy, I’m me, and it’s a part of me, but the filth I still get from the public has nearly pushed me over the edge, no work, no money, no life, even though I’ve got university degrees, when we had the Covid lockdowns in the UK, it seemed everyone was having mental issues with being forced to stay inside but for me it was a huge relief, I could go out without worrying about what they’ll do if I have a seizure, it was bliss

    Liked by 1 person

    Comment by Miss Gail Barry — February 17, 2023 @ 3:29 AM

    • Miss Barry, you are so right about the lockdowns. I heard lots of people complaining and it didn’t bother me a bit, as I haven’t driven in over 15 years. If only everyone could experience a serious-type seizure, just once, I really believe the world would be a kinder place and people would have respect for another.

      Liked by 1 person

      Comment by Roy Anthony — February 23, 2023 @ 6:22 PM

  3. Does ANYONE who have seizures in their life / epilepsy, KNOW ANYTHING & are WORTH BEING AROUND OTHERS ? I know in past history that there were a few such as Albert Einstein, Napolean Hill & some others who’s names aren’t coming to me now. People took notice of Albert Einstein, and all his really good wisdom & smart brain chemistry, but I have to question all that by his marriages & who he married with each one of them. Later his life wasn’t so normal. For my past 15 months SO FAR NO SEIZURES, all thanks to XCOPRI, and yet the so called fair & loving friends, public & alike still have a problem no, A BIG PROBLEM in acceopting you to be a part or even a tiny part of the life you enjoy at a bowling alley where the game of bowling was THE SPORT FOR ME because I could never prove that I was good enough to play a team sport in school, but i could bowl on the weekends & bowl in leagues later. So it was & then the PBA was my dream, which never happened, as I know I would had been in the PBA Hall Of Fame if I were ever was given the same fair chances to prove that nobody was no better than I was because THEY DID NOT HAVE SEIZURES, which made me a worse person than what they are. Hmmm So HOW do I become a worse person with seizures, who believes in God & Jesus Christ, while all who judged & still judge me from the past to today, have their EGOS with them, and do anything to everything to reject my presence around them, while they can act & talk so normally around others as themselves, when they show their backs to me & others like me ? THEY do not need to answer to me & will NOT ANSWER TO ME. Having the seizure tag on your chest, forehead & back is pretty hard to live with no matter what age you are, as kids & teens have it the worse, as I KNOW because of WHAT I AM, WHAT I HAVE, WHAT I BELIEVE & WHO I BELIEVE IN make me a really BAD PERSON to even look at or talk with or to. And that can happen as much, maybe more in this Epilepsy world that we live among ourselves, when 1 say this & 1 say that, as only God in the end will have THE FINAL WORD. That is why I try to live by chapter 12 of ROMANS, because people just do not live the perfect life by believing in 1 verse only like JOHN 3:16 which atheist knows & can remember as they REJECT what it says. That’s why I like AS 1 of my favorite church hymns of WHAT A FRIENS WE HAVE IN JESUS. <<He has my back & my heart & my brain. Romans chapter 12 mentions HOW that works. Are you wondering now what I am saying ?

    Liked by 1 person

    Comment by James D — February 17, 2023 @ 8:10 AM

  4. James, I just past 1 year without seizure over 25 years. Yes, I am thankful to God. I know your pain regarding others, i.e. once they find out that you can have a seizure. Having a social life has been gone for the same over 25 years and it’s tortured me more than the seizures. Others’ have said it differently than me, but my phrase that helps me deal with whether someone is going to like me is: “no expectations….no disappointments” God bless you.

    Liked by 1 person

    Comment by Roy Anthony — February 23, 2023 @ 6:45 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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