Epilepsy Talk

Other Voices — Other Lives | February 20, 2020

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

Ed L.

“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.

“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.

“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.”

T.A.E.

“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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29 Comments »

  1. You guys are bold and beautiful….

    Liked by 2 people

    Comment by Pooja Nishad — February 20, 2020 @ 4:44 PM

  2. Having epilepsy is not always so bad. I have to admit though me and ANY HOSPITALS just do not see eye to eye!! Or just like all of you it wasn’t necessarily the hospitals themselves it was the untrained and untrainable medical staff who just have problems opening their eyes, hearts and minds to possibly learning from those of us who have epilepsy our loved ones, family and friends. However even some of them just can’t seem to allow themselves the want to have that compassion and learn from us. That’s not our faults that’s their loss. For me I always think to myself “WELL THAT IS THEIR LOSS NOT MINE!! Lol ONLY IF THEY REALLY KNEW I COULD HEAR THEM!!”. Oh SOME I LOVE TO DEATH AND SOME ARE SOOOOO SWEAT I ACTUALLY WAKE UP AS THEIR WIPING MY HEAD AND SOFTLY TALKING TO ME!! I WILL NEVER EVER FORGET THEIR SWEET VOICES!!!!!!! 😘🦅💞. As for family who talk about “MIND OVER MATTER” lol “little do they know!! But I will pray for them 🙏🏼🦅😇💗. Fear is understandable to an extent, but everyone in the world has a fault or something they hide. Thanks to epilepsy I can not lie because it would get to my conscience and I could not gamble due to the flashing lights and alcohol and marijuana are just a COMMON SENSE NOT TO INGEST FOR ME!! Lol but yes I DO SMOKE!! I have to admit that, but I jokingly sweat it’s kept me married for 27.5 years and ALL OF MY 5 BABIES ALIVE!! I have to be allowed one vise. This is a quote I always remember for the best of the best 😘. “ friendships never questions you it doesn’t have to ask. It shows in what you say and do no matter what the task. So when trial and troubles challenge you, and life seems so unfair hand in hand we will see them trough because together we can bear 😘”. Thank you for your honesty to all and please have a very good day today and please take care of yourself Phylis 😊🙏🏼🦅😇😘💗

    Liked by 1 person

    Comment by Kathy S.B — February 20, 2020 @ 6:50 PM

  3. I LOVE your quote. AND, I also smoke! A not-so-nice vice.

    But, so far, my life has been good to me.

    Thanks to those I love and those who love me.

    But “unconditionally” is a tough one.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — February 20, 2020 @ 8:50 PM

  4. Yes “unconditionally” is a tough one!! Lol it took my husband 4 times to ask keep asking me to marry him!! Simply because I needed his heartfelt sincere meaning to “UNCONDITIONAL LOVE!!”❤️. Not what he though (dictionary version), or what he thinks sounds good (whatever he thought I thought), or even because I was having our baby (even though we were already raising our brothers before we became an item) wined and dined. It always came back to me asking him “it always came back to what is your meaning to UNCONDITIONAL LOVE”? When I knew he SINCERELY GAVE ME HIS VERSION (after I told him why I kept asking him? And why it was so important to me to know) I finally said “YES I VERY PROUDLY WILL MARRY YOU!! 🙏🏼🦅😇❤️. Turned out to be a BLESSING IN DISGUISE that I kept saying “NO! Not until you tell me your sincere meaning to unconditional love?”🙏🏼🦅😇💞😘. I have NO REGRETS 😘

    Liked by 1 person

    Comment by Kathy S.B — February 20, 2020 @ 9:14 PM

    • I said “No” to Arthur several times. (I think because I didn’t believe it/him.)

      Then when he said that if I wouldn’t make a commitment he’d be gone, I thought of how miserable I’d be without him in my life.

      So, “Damaged Goods” became “Treasured Wife”.

      And, now, 40 years later…

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 20, 2020 @ 9:31 PM

      • WOW!! He sure COURAGEOUS!! I simply said “no” because he couldn’t give a sincere meaning to what I was taught was “unconditional love”. He never gave up asking and finally just told me “I PROMISE I LEARNT MY MEANING NOW!! I have cooked, I have begged and pleaded and now all I have is can you pretty please marry me??”. Lol 😂 we almost hit the ditch when I turned to him and said “YES!! But you get to ask my aunties and uncles and biological reproducer first?”. Poor guy got us home ALIVE and walked into my house and took each aunty out one by one and then uncle and then biological reproducer. IT WAS A LONG NIGHT AND LOTS OF TIM HORTON DRIVES!! Lol 😂 “

        Liked by 1 person

        Comment by Kathy S.B — February 20, 2020 @ 9:53 PM

  5. P.S. I was referring to how I learnt MY MEANING TO “UNCONDITIONAL LOVE”!! It was from MY STUPIDITY AND MY GRANDMA’S FORGIVENESS!!!!!!! 😘😘❤️❤️

    Liked by 1 person

    Comment by Kathy S.B — February 20, 2020 @ 9:16 PM

  6. My great and I rolled my grandma’s new truck and we had to come back and tell her. That was first and only night I ever slept alone!! The next morning we all got up and she told me “I can ALWAYS HAVE A NEW TRUCK!! But I CAN’T ALWAYS HAVE YOU! NOTHING CAN EVER BUY YOU MY GIRL!! 🙏🏼🦅😇❤️😘”. That was MY VERY VERY EXPENSIVE LESSON TO LEARNING MY MEANING OF “UNCONDITIONAL LOVE!!”.

    Liked by 1 person

    Comment by Kathy S.B — February 20, 2020 @ 9:34 PM

    • Your Grandmother must had a heart made out of diamonds for your whole life to treasure, inspire & empower.
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — February 22, 2020 @ 5:10 PM

      • Goodevening Gerrie I hope your doing well and are feeling good. YES SHE SURE DID!! I still live in the house I was raised in by her, my aunties/uncles, great grandparents and great aunties and uncles 🙏🏼🦅😇❤️🙏🏼. I inherited my home and raised my children here as well. So I know I don’t have to go very far to always have a piece of all of them with me, by husband and our children 🙏🏼❤️😇🦅💞😘. But I BELIEVE not only does HAS MY GRANDMA GIVEN ME THAT CHANCE, BUT SO HAS PHYLIS AND ALL OF YOU!! SO THANK YOU ALL AND PHYLIS!! 🙏🏼🦅😇😘😘😘😘😘💞💞💞💞💞

        Liked by 1 person

        Comment by Kathy S.B — February 22, 2020 @ 10:52 PM

  7. Thank you for sharing the inspring stories & experience of courageous men & women who managed to carrying on with their lives against all odds.
    It’s empowering to find out & learn the struggles & achievements of the brave people who has been & still are walking in my shoes.
    I admire & respect their courage to carrying on with their lives inspite of medical hardships & difficult times.
    Gerrie

    Liked by 2 people

    Comment by BahreNegash Eritrea — February 20, 2020 @ 11:49 PM

    • As my friend Sally said: “Pain is inevitable. Suffering is optional.”

      I think these people rose to the challenge magnificently and that’s why I wanted to tell their stories.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 21, 2020 @ 10:08 AM

  8. yeah, thanks for sharing.

    there’s a time when I felt that going to school is useless because of being epileptic. but the support received from the loved ones, parents etc kept motivating until I completed my Masters Degree in Law. it was so unbelievable.

    Liked by 2 people

    Comment by Bokang Makututsa — February 21, 2020 @ 7:42 AM

    • I admire your perseverance and bravery in the face of all odds.

      Few can achieve what you have.

      But you’re right. Love and support go a long way.

      Congratulations on all of your accomplishments!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 21, 2020 @ 10:19 AM

  9. Just to say I can relate to all of what I have read. You are more effected though mentally by words, that if someone would had beaten you to death,as the words never seems to leave your mind while you are still alive. That is when God takes over if you let HIM to be the pilot, & not a passenger riding along. So many times I have asked WHY can’t I just die, & get out of this world like ASAP or more like NOW!!. I do not need the passing grade of a doctor who all they care about is your NEXT appointment and that cal all get started when OTHERS say to your parents when you’re a school student that YOU MUST get to your doctor to remain in school. Forget the other stuff from the detours in your life that OTHERS made sure that you went off course & on the WRONG ROAD, as you were never going to be one of THEIRS who they picked over you. So learning that, you see later those same attitudes where people know you have seizures & all that same attitude follows you wherever you go. And to that I say never allow seizures to be a topic in your life, until a seizure happens in front of someone else you may be around. THEN is when you know what you have for your so called friends are concerned. The rest as they say is history.

    Liked by 2 people

    Comment by James D — February 21, 2020 @ 9:26 AM

    • I agree. Words are the mightiest weapon

      But it takes strength and courage to go beyond them and keep yourself and your soul intact.

      Congratulations for having the strength to choose your own road to follow. And sticking to it, despite the odds.

      You are a true warrior!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 21, 2020 @ 10:26 AM

    • I agree. However for some (yes even me) our own worst enemy are exactly those that like to claim they are our biggest supporters as we UNFORTUNATELY YES SOME ARE ACTUAL FAMILY MEMBERS!! And that’s NO ALWAYS EASY FOR ANY OF US TO KNOW HOW TO OVERCOME until of course WE ARE OLDER AND CHOOSE TO AVOID THEM AT ALL COSTS!! Thank you just food for thought.

      Liked by 1 person

      Comment by Kathy S.B — February 21, 2020 @ 11:52 AM

  10. Goodmorning Phylis 😊. I sure like that quote!! Funny a person may see us on the street and think we are damaged goods. Sometimes I think to myself “that’s just temporarily in flashes”. Then I get back up, brush myself off and think hmmmm what can I do now that I was told I can’t because I have epilepsy? Then do it anyways!! Sometimes I pay a little sometimes it pays off! 😘

    Liked by 1 person

    Comment by Kathy S.B — February 21, 2020 @ 10:15 AM

    • You are a true blessing.

      For your beliefs, your honesty, your compassion and your positive mission.

      Don’t let let anything stop you. (I know, it won’t!)

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 21, 2020 @ 10:30 AM

  11. Suicide is out of the question, that would be utter failure.
    No one will bring you happiness, you have to make ur own happiness. Just the simplest things in life can make it beautiful, just the sight of the first daffodil brings warmth to my heart. Life is filled with miracles and just ur life, a life that took a few billion yrs to arrive on this plant is the most special thing that can be. If not to u than to the ones that love u.

    Liked by 2 people

    Comment by Zolt — February 22, 2020 @ 12:43 PM

    • BEAUTIFULLY said!!! 🙂

      Like

      Comment by Phylis Feiner Johnson — February 22, 2020 @ 2:25 PM

    • Zolt,
      I admire your willpower & practical approach to carry on with your life.
      Yes, besides being grateful to the basic things life has to offer, I agree with you suicide is too selfish to end your life, leaving behind a whole loving family in deep pain, trauma & grief for the rest of their lives to live with & wonder if there was anything they could have done differently to prevent it from suicide taking their loving family member.
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — February 22, 2020 @ 4:51 PM

    • Thank you Zolt. Secretly my reminder is primarily my husband, children, friends, and believe it or not a rose bush and lilac trees in my back yard with my animals, and birds 🦅 🐶🐈💗

      Liked by 1 person

      Comment by Kathy S.B — February 23, 2020 @ 5:04 PM

  12. Were the lilac trees and rose bush planted by your Grandma? 🙂

    Like

    Comment by Phylis Feiner Johnson — February 23, 2020 @ 6:22 PM

  13. Thanks folks, yes, we live in our own little hell at times, but we try and make the most of it, by being creative, happy and not dwelling on the negatives. The oldest lady who can be proven to have lived till 122 yrs old said she thought the reason she lived so long was because of being calm and not over reactive. Jeanne Calment, she said the secret was in her last name. 🙂 I won’t mention she liked her vino at nights, 2lb of chocolate a week and a smoke as well. 🙂 Here is a link on her.

    https://www.dailymail.co.uk/femail/article-1008681/Alcohol-cigarettes-chocolates-sweets–The-secrets-long-life.html

    I also have Lilac tree and bushes in my back yard, and come April they will smell spectacular. No roses yet, but i just got some cutting from my moms house in Sacramento. I’ve also planted like 20 fruit trees, i plan on cloning them soon. I love to garden and work outside in the sun, i live in the Redding area, so the temp is always nice and comfortable for the most part. Especially now after Feb the start of 80 deg weather returning next week or actually this wed they predict the weather to be in the 80s. Woo hoo.

    Hope we all have a great week and seizure free.

    Liked by 1 person

    Comment by Zolt — February 23, 2020 @ 7:54 PM

  14. “The world is made of stories, not atoms,” wrote Muriel Rukeyser. Sometimes a story is as good as a kitchen table friend.

    Liked by 1 person

    Comment by HoDo — February 24, 2020 @ 11:38 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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