Epilepsy Talk
Other Voices…Other Lives… | July 17, 2021
“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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Tags: adapt, damaged goods, emotional, friends, fulfilling, memory, opportunities, relationships, seclusion, seizures, succeed, suicide
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Epilepsy Talk 
It is impossible to believe there are over 65 MILLION who lives with seizures, and to believe over 65 MILLION DIFFERENT CASES WITH A DIFFERENT CONDITION THAN ANYONE ELSE ? So many have focal epilepsy, & all other types which MAKES ME TO BELIEVE THIS>> We all basically are given the same drugs from the start of the OLD & NEWER ASD’s which are for whatever type of epilepsy we all are to have. Now we ALL no matter WHO we are or WHERE we live, do the same basic things with having 3 meals a day, absorbing MANY TOXINS, CHEMICALS, ADDITIVES & PRESERVATIVES that are today getting to be more so in our ASD’s & OTHER neurological drugs, OTC drugs, & almost in every food & drink we CHOOSE to consume daily. Well I choose NOT TO CONSUME AT LEST 95% of all foods on the market today. & I always drink GOOD WATER & SAFE MILKS, and all other things that I love SO MUCH TO EAT, as some foods I have NOT HAD THEM FOR OVER 35 YEARS, as I think when I see them NO WAY, is any focal to a GRAND MAL / TONIC CLONIC worth having just for 1 to 3 minutes or more eating or drinking a food or a drink, where later a TONIC CLONIC / GRAND MAL is the end result. Read up on COVID ALIMENTARIUS from when it started in the late 30’s & after the end of WW2, and how THE DARK ACT LAW that was passed in 2017 when president Obama signed it into law, and he did not do that to make our lives any easier OR HEALTHIER where ALL of human brain chemistry gets better. These are 2 things that NEVER gets talked about to how it effects ANY PERSONS LIFE who is looking for answers as to WHY & HOW seizures or anything happens to anyone. I would like to know all the foods that ADAM & EVE, ABRAHAM, MOSES, NOAH, SALOMON, & the disciples ate besides fish, honey & bread, as the world then had NO CHEMICALS or other TOXINS to preserve foods & drinks to last forever that a drink or a food can NEVER GO BAD & have NO EXPIRATION DATE. That is why I believe MARK 9:29 is at least 1 answer to slow down or stop seizures as it reads,,, This kind can only be healed by prayer and fasting. MATTHEW 17:21 is very similar as it mostly reads the same words. It’s not that I want everyone to BELIEVE ALL THESE TYPED WORDS THAT YOU JUST READ, but,,, ARE YOU TO BELIEVE ALL THE WORDS YOUR EARS HAD HEARD FROM ALL DOCTORS WHO TELLS YOU BASICALLY THE SAME THINGS, AND YET THE MAJORITY OF THEM SAYS nothing about the words I typed, where my brain chemistry SHOUTS OUT A LOT when I may had a BAD food or drink at times that I may not had realized it had MSG’s, ASPARTAME’s, NITRATES & NITRITES, that never helps my brain chemistry but SUGAR is not as bad as so many doctors & diet pros say it is, BUT they are OKAY FOR ANY OF US to have aspartame. All of this is WHY I say,,, THE BRAIN NEVER LIES. A quick test to know is eat a TOMATO as is. Another day or week or month later,, EAT FRIED TOMATOES with SUGAR sprinkled on them. You may see 2 different brain chemistry reactions. Drink good water, compared to any DIET or ENERGY drink. Again,,,,The Brain Never Lies. I have been listening to my brain now for over 56 years. When I END eating or drinking a food or a drink, I have never suffered or paid a price for NOT having that food or drink, BUT if I did not listen to my brain & kept on having the drinks & foods I desired to eat or drink, I may not be here now explaining to anyone who CARES & WANTS to find answers that ”most” doctors & diet pros will not tell you. Remember P&G who sells 99% of all foods, & drinks wont ever be honest about their unsafe items they want people like US, to eat & drink. So HOW MUCH MORE are we alike than different if we ALL in more ways than not EAT & DRINK the same foods 365 days a year, as we all do not have OVER 65 MILLION DIFFERENT DIETS.
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Comment by James D — July 17, 2021 @ 5:38 PM
First, to Phylis…
Thank you for being the awesome, brave soul that you are and sharing what you did, I know that could not have been easy. Epilepsy Talk would not be here without you and you are the “Gold Lining” for which we all now have a voice and if you think that doesn’t matter, please think again. I know you have helped me find new ideas and resources. I know you have served as a catalyst of sorts to be a voice that creates much more awareness that we as epileptics of all types need help. People, in general, and that includes Drs and other professionals do not understand our need and what makes us tick! It’s very hard to live with what we do and, NO, people who pass judgement are not making it any easier with their ignorance and lack of compassion. We are not stupid, lazy individuals who choose not to work. Nothing could be further from the truth.
We fall into a category much like a spectrum that needs exploring through research and today, thanks to you our Phylis, we can be grateful that we are being heard more because you are 1 in a million and I’m so happy you are with us because we support you too….never forget that please.💜
Thank you also goes out to Arthur, your rock. We all appreciate you very much!!
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Comment by Janet R. — July 18, 2021 @ 5:16 PM
It’s you I wake up in the morning for. Because without the souls of Epilepsy Talk, life would have little meaning.
Thank you, Janet for seeing that.
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Comment by Phylis Feiner Johnson — July 18, 2021 @ 5:36 PM
It’s such a common illness, but I’ve suffered discrimination, people still seem to think I’m demon possessed, too dangerous as one person said to me last year when I tried to work as a volunteer in his shop. I’ve managed to keep my life as normal as possible, even travelling abroad on my own, but now I’m 66, with no friends and the family’s split as usual, heading off to other places. It’s taken me to suicide, I think what’s happened to me would be called the new phrase, hate crime, with all the disgusting comments I’ve had, it is oral abuse
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Comment by GAIL Barry — July 18, 2021 @ 5:51 AM
12 years ago, I tried to kill myself and almost died. My heart stopped, I had two heart attacks, was in a coma and on life support for 5 days. Then I was in the hospital itself for 5 days, until I was transferred to another hospital for rehab, followed by 4 weeks of out-patient.
But I still couldn’t button a shirt or tie my shoes, no less find the key board. Exasperation turned to tears. I was useless.
Yet there was certainly time to think. (Almost dying can certainly change your perspective.) And I realized I was one of the lucky ones. After all, I was still alive. And I was better off than a lot of other people who had Cancer, Alzheimer’s, Cerebral Palsy, and Parkinson’s, to name a few.
So I decided to turn lemons into lemonade. I ditched my day job (I had my own freelance writing business for 35+ years) and I became a full-time epilepsy advocate…helping others like me and trying to teach the uninformed and misinformed, like so many people in my life had been.
And thus, Epilepsy Talk was born.
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Comment by Phylis Feiner Johnson — July 18, 2021 @ 9:19 AM
Dear Everyone….
One thing that makes this group so wonderful is everyone’s unique ability to share their deepest, darkest thoughts and understand that the rest of us will not judge you for it. How could we? I happen to like the new slogan, “It’s OK to not be OK.” The difference, I believe, between us and the general public is that we actually talk about our issues with depression and battles with suicide. Those issues are still not openly discussed because it just isn’t which is a pretty lame excuse! However, new light is being shed on that subject and it is slowly grabbing the attention of the general public. I also believe that part of the problem is fear based. Any time someone looks or acts in a strange manner most people run! It’s an unusual person who offers help and even then that person is often seen as odd or kind of intimidating themselves. Just because a person offers help to another person in distress does not make that person strange or weird or even intimidating but all of that has happened to me because I have caught seizure activity in children and been told I’m nuts simply because a “professional” didn’t observe it! Gee…I only live with every symptom I’m observing including the confusion, lethargy, and depression I’m observing but there must be something wrong with me!!! Well, there is and I have not always shared that fact because it still is not received well and I’m a professional too but the other ones I’ve had to deal with were intimidated by me, my skills, my knowledge and they felt the need to put me in my place. Why? I was different and tried to discuss issues they weren’t equipt to deal with. The thing I’m most proud of is that I have been successful in preventing several suicides and those children are doing very well today simply because I listened and recognized the behaviors.
As epileptics, I sincerely believe we have been given a gift. It’s not always fun to have this gift but if we choose to see it as one we can use it to help each other and others who don’t have it to realize that living in fear is no way to live. Everyone has something they must deal with and guess what?? It’s OK to not be OK😁
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Comment by Janet R. — September 10, 2021 @ 2:12 AM
Phylis, thank you for using the verse from my poem. In a nutshell, what that summarizes is the fact my parents gave me the “fear of God” enough to prevent me from comitting suicide.
In a two-year span in my teen years, I watched the death of my sister and mother (my two heroes who gave me maximum support) and the return of seizures after four years of seizure control. Who wants to live after that happens?
Like you, I eventually got myself straightened out and it led to a second chance at life through surgery. Right now I just wanna help as many people as I can to show my gratitude.
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Comment by Ed Lugge — July 18, 2021 @ 11:20 AM
For everyone else, I believe you are all correct in what you say about your shared experiences. We are hearing more and seeing more about epilepsy on television medical shows than ever before and that’s a good thing because it is creating awareness. It’s a step in the right direction I believe. It makes sense that our diet would effect us because our problem is biochemical in nature and what we eat supplies us with what we need biochemically. The breakdown is also biochemical. Our bodies struggle with maintaining the balance to make it function properly to put it really simply. The meds we take are sometimes derived synthetically but they can also come from nature. It all makes sense when broken down. I just find we all want the quick fix and sometimes there isn’t one. We need to stand by each other and continue to offer the helpful suggestions and support to get through each day and stay strong. The answers are coming I know they are, I can feel it!!!💜💜
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Comment by Janet R. — July 18, 2021 @ 5:30 PM
Ed, you are a blessed soul who made his own good fortune. True, you may have had angels watching over you, but ultimately your courage and bravery made you what you are today. And I salute that.
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Comment by Phylis Feiner Johnson — July 18, 2021 @ 5:39 PM
Phylis, thank you for your honesty and your passion for all of us in the epilepsy world. It does wonders having someone like you to be an advocate and constant encourager. I feel very blessed to “know” you here. Thanks for all you do!!!!
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Comment by Suzanna Price — July 19, 2021 @ 11:25 AM
Suzanna, thanks for all of your valuable contributions.
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Comment by Phylis Feiner Johnson — July 19, 2021 @ 11:28 AM
Awww…. I think all of us can see who you are and the meaning behind all you do. We would all be lost without you!!
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Comment by Janet R. — July 19, 2021 @ 9:01 PM
Phylis, please tell this to anyone who feels as depressed as I was in the 1990’s – before Dr.’s found out why my epilepsy was Intractable. It was about 1996 and I wanted to injure myself but what stopped me was I’d hurt several people/family WHO LOVED ME. Remember to think of both sides in the many things we do. Thanks Leon Chavarria
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Comment by Leon Chavarria — September 2, 2021 @ 3:01 PM
Unfortunately, I was only thinking of myself and how much emotional pain I was in. 😦
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Comment by Phylis Feiner Johnson — September 2, 2021 @ 3:11 PM