Epilepsy Talk

Other Voices — Other Lives | February 17, 2018

“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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20 Comments »

  1. People do not believe me when when I tell them about the problem. People can not understand why I repeat myself.

    Like

    Comment by Pauline Polzin — February 17, 2018 @ 1:06 PM

  2. Shakespeare once said, “I was angry because I had no shoes. Then I saw a man who had no legs. That’s when I learned how to be grateful with the very basic things I have”.

    Reading this post, I’ve come to learn, admire & appreciate the inner strength of all these people who had overcome all the odds to beat the hardships in epilepsy.
    I never imagined in my whole life that I’m going to have seizures & would be handcuffed to Ambulance & Hospital bed because of Epilepsy, one day.
    Thanks to a good friend who dropped everything what he was doing & asked a ride from another friend to come to the rescue, STANDING BY MY BED & threatening the Emergency Room Doctor & the Hospital for medical malpractice, the hospital was FORCED to remove the handcuffs of my hands & I was let free to go, getting up & walking out of the hospital as fast as I can.

    Obviously, Epilepsy has been the most radical change in my life but while Epilepsy restricted the life I had known to live, knowing that I still have good friends who will come to my rescue & stand by my bed, rooting for me when I’m down & out, makes me treasure & appreciate of the very basic things I’ve in life, just like Shakespeare learned the hard way.
    MAY GOD BLESS US, ALL!

    Like

    Comment by BahreNegash Eritrea — February 17, 2018 @ 2:30 PM

    • Gerrie, you’ve been down a long, hard road, yet you remain forgiving and optimistic. You deserve the type of friends you have and I’m sure you’re just as good a friend to them.

      Like

      Comment by Phylis Feiner Johnson — February 17, 2018 @ 2:35 PM

  3. WOW ! So many thoughts I read that I could had written. I just say it’s like the Aerosmith song DREAM ON, where ”’half my life’s in books written pages, lived and learned from fools and from sages”’,,, who are the drug makers & doctors no doubt, so as long as they hold that remote control in THEIR HAND about your life, then you’ll have NO LIFE, unless you do more tests to stop the boredom of your present life, thinking an answer or a MIRACLE finally is ready to happen for you. Like yeah,, DREAM ON. Maybe tomorrow the good lord will take me away. That’s when I DON’T LOOK BACK, until then I CARRY ON MY WAYWARD SON, until I HITCH A RIDE, & COME SAIL AWAY, because it will be then DUST IN THE WIND with the SPIRIT IN THE SKY. Until that day it will be like HERE I GO AGAIN with more seizures, even as LIFE’S BEEN GOOD as all I need is PEACE OF MIND to know it’s all is in Gods control. I did not plan these words last night or last year, as the words I read from others made the thoughts when rejections that we all have from this world, only proves they, ( doctors & alike ) can not and CHOOSES NOT to relate to any of us, with having seizures, taking drugs & etc,,, that comes with it all. They all seem to use us for their own benefit especially in the medical & drug world, when all your life is seizures & epilepsy centered with them. Forget having any real life.

    Like

    Comment by C D — February 17, 2018 @ 3:09 PM

    • Although I am just “dust in the wind,” I feel I have a real life.

      Like

      Comment by Phylis Feiner Johnson — February 17, 2018 @ 4:56 PM

      • And one with a profound impact, Phylis!

        Like

        Comment by megambon2164 — February 17, 2018 @ 4:58 PM

  4. At one point, I really considered it. I sang, “Les Miz” in college. All I could think of were these lyrics: “I had a dream my life would be/So different from this hell I’m living/So different now from what it seems…/Now life has killed the dream I dreamed.” Then had a heart attack, aspirated, and I flat-lined from status epilepticus. I realized how lucky I was to be alive, to regain the ability to think, walk and talk at a high-functioning level. Although I am not perfect, I have grown by leaps and bounds in terms of depth, empathy, and advocacy for others who cannot speak for themselves. And, being the good Catholic, I will never think of suicide again. I can’t afford to be banished to purgatory for eternity despite my good work on earth.

    Like

    Comment by megambon2164 — February 17, 2018 @ 3:58 PM

  5. Epilepsy is an extremely traumatic experience. From the onset of the diagnosis, the patient and his/her loved ones should receive some form of short-term counseling to help deal with the many tremendous losses that occur. And the fact that it is not immediately recommended as it is for example with cancer, aids, alzheimers and other concerns, speaks to how much people with epilepsy as treated like sh*t.

    Like

    Comment by skolly9 — February 18, 2018 @ 8:52 PM

    • I think this is a tremendous thought and idea! How do we make this happen?

      Like

      Comment by Angela — February 19, 2018 @ 8:46 AM

    • I agree. That’s why I call epilepsy “the stealth disease.” (Even though it’s not a “disease”.)

      I’m also a big fan of counseling. It’s done a world of good for me.

      Like

      Comment by Phylis Feiner Johnson — February 19, 2018 @ 10:25 AM

    • Just like Skolly pointed out, the whole Society in general & the Medical establishments in particular, needs to recognize that Epilepsy is a very drastic trauma on the patients & their families, requiring immediate intervention & support system to alleviate the painful ordeals that’s assocciaciated with uncontrolled seizures on the patients & their families.
      The medical establishments & hospital system should provide ALL available information & services that should help the patients & their families to cope with ALL the drastic changes associated with Epilepsy.

      In my case, I had no idea what Epilepsy was all about nor did I knew why I keep ending up in hospitals all over the country including in my vacation away from my home state, until I found this Website & started digging out all & any information I can find about Epilepsy &/or seizures.

      And thanks to ALL members of this Website sharing your experience with Epilepsy/Seizures, this Website became my counseling & therapy room learning how to cope with Epilepsy, more than I’ve ever learned from the medical establishments.

      Therefore, just like you pointed out, counseling, providing helpful information & support system would have made coping with Epilepsy less traumatic than it has been.

      Like

      Comment by BahreNegash Eritrea — February 19, 2018 @ 12:09 PM

      • I believe that education is the key. Only then can we have understanding.

        But for our part, we must support advocacy, even if it’s just one person at a time. They must learn to act, not react.

        Like

        Comment by Phylis Feiner Johnson — February 19, 2018 @ 12:17 PM

  6. Yes Angela, I do believe it’s a great idea. However there is still a stigma regarding the issue of therapy and mental illness. Since there’s already a stigma attached to epilepsy, people might be leery to venture in that direction, which i think is really, really a terrible problem. Yes, I, like you and Phylis and others would like to see it change.

    Like

    Comment by skolly9 — February 19, 2018 @ 6:43 PM

  7. My pediatric neurologist told my parents I wouldn’t see my 7th birthday. This summer I turn 56 and I’m so happy for every day. I’m sure I’ll have a day when I ask is it worth it ? But yes it’s worth it I’ll get through it.

    Like

    Comment by Bonnie — February 22, 2018 @ 2:56 AM

  8. the woman who went into status after having her baby, she sounds more like she was in dissociation. I’ve found out I have it, and neads, not epilepsy, and it is possible to have status with neads. I can hear and see, can’t make sense of it, can’t act

    Like

    Comment by Gail — February 25, 2018 @ 5:08 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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