Epilepsy Talk

Other Voices — Other Lives | November 6, 2017

“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.

“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.

“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.

“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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30 Comments »

  1. My granddaughter has epilesy, kids call her stupid , fat, dumb. Im crying bc it breakd my heart

    Like

    Comment by irma De La Rosa — November 6, 2017 @ 8:59 AM

    • Oh, I’m so sorry for you and for her.

      Is there any way the school can help?

      The Chicago Epilepsy Foundation has some good awareness materials:

      http://epilepsychicago.org/education/awareness-materials/

      Like

      Comment by Phylis Feiner Johnson — November 6, 2017 @ 9:08 AM

      • Maybe school(s) help today, but did not when I attended. People were uneducated. No one (even some teacher) understood the condition; they made fun of me, never chose me for game teams, teachers even accused me of ‘daydreaming’. Hopefully they all got it and then see what I went through.

        Like

        Comment by Karen — November 6, 2017 @ 6:15 PM

      • I remember going to the school nurse, as I was about to have a seizure. She had “dutch doors” (do you remember them?) and I collapsed over the bottom one. She was busy talking on the phone while I was having a seizure, straight in her face.

        Ahhh. The good old days. 😦

        Like

        Comment by Phylis Feiner Johnson — November 6, 2017 @ 6:43 PM

    • My 2nd grade teacher got into my face while i was incoherent after a seizure. She called me “Baby Bethy”, laughed at me because I was so tired, and told me that I was not allowed to go to the nurse because i was “faking it” (despite the wet pants). People are cruel, and often unapologetic about it.

      Like

      Comment by Liz Caldwell — November 11, 2017 @ 4:53 AM

      • Cruel, mean, insensitive AND ignorant. That’s what lies at the root of the problem.

        Happily, some of the EFA Education Directors are going around to schools: educating teachers, nurses and STUDENTS about epilepsy.

        Wouldn’t it have been nice…

        Like

        Comment by Phylis Feiner Johnson — November 11, 2017 @ 9:25 AM

  2. Heavy metals continue to be a significant part of seizures. The (ADA, AMA, FDA) all work together to sweep this issue under the rug while other parts of the world take this issue serious and do not allow the exposure of heavy metal that is allowed in this country.

    Like

    Comment by Donald Perman — November 6, 2017 @ 11:03 AM

  3. My heart goes out to all those affected. My battle with epilepsy started when I turned 65. I’ve struggled with the Meds which all have after effects. I found taking the persons DL away only adds to the depression. Loosing your independence only adds to the problem. I can’t believe this problem is usually dealt with kids. I’m told this is the new 65’s. Any information would be appreciated.

    Like

    Comment by Garry Carrier — November 6, 2017 @ 12:49 PM

    • Unfortunately, you can get epilepsy at any age.

      “About 1% of adults 65 years of age and older have active epilepsy, which is about 447,000 people.

      That’s about the size of Corpus Christi, TX. With the aging of the population, we can expect to see greater numbers of people with epilepsy.

      Epilepsy is more likely to develop in older adults rather than younger adults because as people age, the risk of seizures and epilepsy rises.

      Some older adults may have lived with epilepsy throughout their lives, but others might develop epilepsy later in life.”

      https://www.cdc.gov/features/epilepsy-older-adults/index.html

      But at any age, it’s a BIG adjustment and, in many cases, a trauma.

      I can’t even imagine what it must be like to adjust to a life of epilepsy at 65. 😦

      Like

      Comment by Phylis Feiner Johnson — November 6, 2017 @ 2:05 PM

  4. As Thanksgiving Day will make it 57 years since my 1st ever seizure at 5 months old,, I have not had any 1 neurologist to EVER listen to my thoughts, concerns & dreams of life, that they have any desire to understand that we are like most other people who do not have seizures. No I could be a lot worse, yet at the same time I know THINGS CAN BE BETTER & the medical world from the CDC, NIH & FDA could care less as with the AAN, who’s angels are their neurologists who puts OUR NAMES WITH NUMBERS. The only numbers they really care about is that TOTAL NUMBER on the BALANCE SHEET with our ACCOUNT NUMBER. So ask yourself these few questions about neurologists,
    1-Do you think they care about the NUMBER of seizures we have or side effects from the drugs we take ?
    2- Do you think they care of the NUMBER of days where we can not live any normal life because of our seizure condition/s ? EXAMPLES,,, When you>>Can not drive, Can not work, Can not socialize,, FB & TWITTER does not count,, Can not live & just do some simple task with a little danger because of AED’s.
    3-WHEN was the last time,, or maybe FIRST TIME your neurologist called you in person on his OR her personal time to ask you HOW you have been feeling since the last visit, other than asking you that question at your next office visit. They forget you & your phone NUMBER quickly.
    4- What NUMBER position do you think you are at on a list of every patient they have from 1 to the bottom of their list ? You think ANYONE has the #1 top position or even up to the top 100 patients where they may think you & your life may mean something to them ?
    5- If we all are to be working WITH our neurologists, then where from NUMBERS of 1 to 10 1 being GREAT & 10 being worse than BAD, does the listening from them matter about OUR thoughts & concerns mean anything to them helping us ? I think ALL neurologist better understand ”’what WE think that number is about THEM” which might help their own career, or destroy it, and that we and our brains are not from RATS to experiment with. We all are Gods gift to the world & God alone is all we HAVE TO HAVE to live a life, not AED’s, CBD oils, & other medical gadgets that is not promised to work for any of us. I’m tired of FALSE HOPE & the expensive costs that proves ”nothing” & the proof where I have supplied to NIH & others that never gets any attention to addressing a seizure root cause to cure it. . So WHO will change all of this for us ? It’s not BIG PHARMA, FDA, CDC, NIH, or AAN.

    Like

    Comment by C D — November 6, 2017 @ 1:52 PM

  5. Been 55 years for me,I was very blessed to have a mom who did nothing but build me up and if anyone ever ripped on me when I was younger I remember mom took the time to educate them.

    Like

    Comment by Bonnie — November 6, 2017 @ 3:00 PM

  6. I started having seizures at the age of three my mother told me. When I went to school up through the third grade I never had problems with the other kids. Then when I started the 4th grade I started a city school. Every thing was good until the other kids seen me have a seizure. Then all problems begin. I was no longer liked by any of the other kids,was not allowed to play games with them because they would not let me. The kids always called me crazy. The girls would say to one another don’t touch him or you’ll die because he’s poison. I would tell the teachers the things the other kids where doing to me. All they would say is we can’t make them let you play games with them or quite calling you names. So by the age I turned 13 I was put in a state mental hospital. Being 13 I was put with people old enough to be my parents. When I’d have a seizure I was locked in a closed room with no clothes clothes on and nothing to sleep on but a cold concrete floor. I stayed in that hospital for 9 months. Finley my mother was able to get me out. When I went back to school I would sit in the office so the during recess and lunch breaks so the other kids would not bother me. So I never dated until my 30’s . In 1986 I had brain surgery and for awhile I had no more seizures. So I met a lady in church and we started going together and finally got married. She knew that I once had seizures and had surgery for them. I was seizure free a couple of years then they came back. I would have them in my sleep and she told that she was not going to sleep in the same bed with me any more. I got depressed and we got divorced. Now I’m 62 and live alone never been with another woman.

    Like

    Comment by David H. — November 6, 2017 @ 9:01 PM

    • OMG. My heart breaks for you. Much like Mike Farnum — “the guinea pig” — who didn’t make it past 58.

      You have been through hell on earth, and it seems, with little solace for a human being and a spirit so strong.

      I hope you find some form of peace and happiness in the future.

      Like

      Comment by Phylis Feiner Johnson — November 6, 2017 @ 10:14 PM

  7. I can’t imagine being a child with epilepsy, my seizures started when I was in my forties and I’m now 54. being controlled with medication, after trial and error. My heart and prayers go out to you and everyone who has to deal with this since a young age. It’s such a NOT talked about condition….still to this day I hear such “stupid” comments, for lack of a better word, regarding seizures….I just feel it’s still a hidden illness in the main stream.

    Like

    Comment by Barbara P. — November 7, 2017 @ 8:37 AM

  8. The last two weeks have been very hard for me. I have increased depression. I was quite honestly sucidal. My son would look at me and ask “Mom did you take your meds” . My memory has been shot d/t this fricken disease. The medication side effects are awful. Is it better to seize and not take meds? Or take the meds and fight the other battles as well as the continued seizures. I do not know. Did/do I have a plan? Yes. What stops me ? My sons. They would hate me for giving up. I have always told them on any task they have tried dont give up. I would be a hipocrite.

    Like

    Comment by Karla Tripke Baye — November 8, 2017 @ 8:55 AM

    • DON’T GO THERE. I’ve been there and back. Two heart attacks, a coma, 5 days of intensive care, 5 hospital days, 2 weeks of rehab and I still couldn’t even type out a sentence for months.

      It’s desperate, it’s ugly, it’s giving up.

      Please see a therapist. Get some anti-depressants. (I’m on Effexor, an oldie) and talk about your frustration and fury.

      There is no other way.

      Like

      Comment by Phylis Feiner Johnson — November 8, 2017 @ 9:28 AM

    • Please keep hope….I have been to that point also, the meds really “kick your butt” and make you feel terrible sometimes. The only thing that keeps me going is my faith in Jesus. I believe one day this will be behind us…keep hope. Never give up, people care and need you around.I agree with others in this thread, please get help, talk to someone about your feelings and frustration. You are in my prayers Karla. Hugs, Barbara

      Like

      Comment by Barbara P. — November 10, 2017 @ 8:51 AM

  9. Reblogged this on catsissie.

    Like

    Comment by catsissie — November 8, 2017 @ 1:53 PM

  10. Thank you.

    Like

    Comment by catsissie — November 8, 2017 @ 1:55 PM

  11. Thank you for posting. I can relate to a lot of these comments. I thought about committing suicide at one point. Other than my mom, who was my patron saint, my family was very abusive and did not “get” epilepsy. I was “stupid, fat and lazy” despite having 3 college degrees and working on a second Master’s. I couldn’t take having so many seizures.Also, after my mom’s death, I was having them because of someone else doing K2, which triggered my seizures. Simultaneously, I developed PTSD from the stress of being assaulted by a former “friend” of many years, and then having some friends blame me. Yet I am a devout Catholic. I knew I could never join my mom in heaven and would be stuck in purgatory forever. i didn’t deserve that after living hell on earth. Also, my mom would never forgive me. She lived hell on earth with grace and compassion, although she sacrificed far too much of herself for my sake. She was “the wind beneath my wings.” I could never let her down like that. I took my sorrows and turned them into motivators. I am so much stronger and wiser for the experience. And now I am more than 1 year seizure free!

    Like

    Comment by megambon2164 — November 9, 2017 @ 2:16 PM

  12. What strength and resilience you have.

    To deal with the trauma AND the shame.

    You’re a true warrior.

    Congratulations on your 1+ years, seizure-free!

    Like

    Comment by Phylis Feiner Johnson — November 9, 2017 @ 2:25 PM

    • Thanks so much Phylis! You have been such a great support to me! i knew you would appreciate this honest post.

      Like

      Comment by megambon2164 — November 9, 2017 @ 2:28 PM

  13. Just got diagnosed my 1st seizure was on vacation 4 my grandmas 95 bday .this was in may still dnt know what triggers them but they are more now.still learning.

    Like

    Comment by Digmarie Oneill — November 11, 2017 @ 11:17 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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