Epilepsy Talk
Return from the Edge… | July 30, 2021
I almost died.
For a while I couldn’t even read.
My brain needed rebooting.
They told me my heart had stopped and I was lucky to be alive.
It took me several months for my cognitive abilities to return.
Months during which I had plenty of time to think.
Previously, I had a high paying job in advertising, which I hated.
I loved my clients and they loved me.
But I wanted to help people.
It was time to give back.
And my near-death experience gave me the perfect opportunity.
(Once I found the keyboard!)
I went to all sorts of non-profit organizations. No one wanted me.
Until the Epilepsy Foundation of Eastern PA welcomed me with open arms.
The monthly support groups were like manna to the soul.
Nevertheless, it was not enough for me.
I wanted to write about epilepsy, a subject dear to my heart.
I sought to put epilepsy out in the open and talk about it.
After decades of epilepsy, that’s what I knew best.
Along with the fear, discrimination and ignorance that went with it.
My parents wouldn’t even say the “E” word.
My step-father surgeon told me my brain waves were just uneven.
As I smashed into walls and fell up and down the stairs.
But there was nothing wrong with me.
I couldn’t bear it. And knew that I was not alone.
I truly believe, in their heart of hearts, that people want to help.
They are kind and caring. Not ignorant and selfish fools.
It was just a matter of showing them how.
I wanted to start a website. But, I didn’t have a clue how.
Passion was my motivation.
Helping others was the key.
If we can’t help each other, who can?
After much research, gnashing of teeth and some false starts, Epilepsy Talk was born.
The purpose is to educate and inform. Those who have epilepsy, plus their near and dear ones.
I was treated like a pariah, and discriminated by even my own parents.
But, I have finally found a safe place.
Where people can come, learn, ask questions, even vent.
People who wanted to commit suicide have been talked “off the ledge”.
Others have helped one another cope and even prosper.
These kind, caring, compassionate people have become my life.
The reason I get up in the morning.
Epilepsy Talk has become the home I never had.
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Thank you for all that you do
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Comment by Marshall — July 30, 2021 @ 8:59 AM
Thank you for statements! I thought I could help everyone by listening and sharing! My last surgery, I am not as good , I love helping people and animals! I worked in hospitals and research until my sz. got out of control, I volunteer all the time , time!
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Comment by Toni Robison — July 30, 2021 @ 9:26 AM
Bravo to you, for volunteering against the odds!
Seizures or not, everyone can use help and support.
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Comment by Phylis Feiner Johnson — July 30, 2021 @ 9:30 AM
And you and ET seem to know where most who live with seizures & has a diagnosis of epilepsy knows where & how people do & can suffer in this world. Still where there is a seizure reality from what THE FOOD, DRUG & MEDICAL WORLD GIVES TO US, & it gets ignored, that seizure reality that gets ignored by all, ends up helping nobody to stop root causes as to how & why seizures not can happen but gets injected into our life for some of us ”for life” & then when the best days & years are gone forever, you may have a little influence because you are still alive after 60+ years living with seizures. But Who are neurologists & other doctors think they are fooling, when they have known as I’ve known for decades that the food & drug worlds with their toxins, chemicals, preservatives & additives are never a FRIEND TO THE HUMAN BRAIN. An example,, CBD oil is to help for seizures and there are MANY CBD oils. Those bottles of CBD oils never say WHAT TYPE of seizures they are good for treating or stopping, as you play again RUSSIAN ROULETTE with taking CBD, & my pharmacist say that all CBD oils have different as getting a weaker or stronger than average concentrated levels in them and you may have more than just 1 seizure, or no seizures from any of them. But MSG’s, Aspartame, Nitrates & Nitrites will never be talked about daily at 1 neurologist office or any doctors office relating to seizures to anything else that they can make happen worse than what it would be without them in a diet of any kind the diet is.
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Comment by James D — July 30, 2021 @ 9:33 AM
Thank you so much for sharing- only people with epilepsy can understand!! I’m in the process of a battery of testing for brain surgery to resect the portion where they originate – definitely temporal lobe, but obviously they want to pinpoint it. After my last week in the hospital to do EEG monitoring, I gave them a couple of good seizures (off my meds) and it took a good couple of weeks to feel somewhat back to “normal”.
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Comment by Faith — July 30, 2021 @ 10:01 AM
When you’ve had surgery and been the recipient of a second chance at life, you just wanna see as many people as possible receive the same fortune. Nothing would make me feel better than to hear you had surgery and it was successful! Best of luck from the bottom of my heart!
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Comment by Ed Lugge — July 30, 2021 @ 5:01 PM
Best of luck with your brain surgery. Hope everything is resolved and that you’re back to “normal” soon.
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Comment by Phylis Feiner Johnson — July 30, 2021 @ 10:12 AM
Thank you 💜
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Comment by fhooping — July 30, 2021 @ 10:55 AM
Reblogged this on Disablities & Mental Health Issues.
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Comment by Kenneth — July 30, 2021 @ 10:27 AM
Phylis, do you need an Assistant? I could quote many of your lines from up above almost verbatim. But I guess we all could to one extent or another.
Epilepsy Talk is our lifeline, our safe place, our sane escape when it gets so overwhelming. You put your full name to it and on it! We know that you are Phylis Feiner Johnson. How courageous! Thank you.
You have given us a place to come 24 hours a day. The other places of support add to regaining some sense of self-respect and of dignity. But you are the tops!
My only issue with my local chapter of the Epilepsy Foundation is that the Staff and those on the Board of Directors is that they do not have epilepsy. If you have never had a seizure, you really cannot fully empathize with those who have had so many of them. Additionally, many of the other websites are simply places where the majority – though not all – of what they do is rant and rave. You have struck that delicate balance that gives so many of us hope. Thank you again.
I think that some others would also agree that you do give us back what the world and the medical community (almost unknowingly) have taken away from us – dignity and respect.
As you have been here for us, I hope that you have found that we have and will continue to be here for you.
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Comment by George Choyce — July 30, 2021 @ 10:53 AM
Humble thanks. Your home is my heart.
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Comment by Phylis Feiner Johnson — July 30, 2021 @ 11:17 AM
Thank you for doing what you do and being who you are ! I have found your posts to be so helpful !!!
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Comment by Nancy — July 30, 2021 @ 12:38 PM
Thank you for all you do. I was diagnosed with Temporal lobe epilepsy. Many seizures since my son passed away in 2020. The medical staff and others mean well, but it’s usually talk about the brain, with hours of talk therapy…ugh.
*Try ‘living’ one day after a seizure.
The ‘guitar’ has become my friend…actually helps.
***And so does this website. Thank you again!!
Robert
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Comment by Robert — July 30, 2021 @ 2:40 PM
Robert I can’t even imagine the pain of losing a son. And having TLE yourself.
Sometimes talk therapy can be besides the point. But I’m lucky. I found a real prince of a man and he’s made a world of difference to me.
I’m glad you’ve found some solace with the guitar.
And if there’s anything we can do, please, don’t feel shy. Sing out!!!
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Comment by Phylis Feiner Johnson — July 30, 2021 @ 4:31 PM
Thank you, Phylis. I’m really glad I found this blog. I agree with George about that “delicate balance.” We all need hope. Sadly, I’ve found the EFA to be consistently focused on “a cure” and raising $ for young people with E. All admirable, no doubt. However, what about the rest of us, adults struggling every day trying just to get by. Pretty much just leaving us behind. The story of people with Epilepsy.
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Comment by skolly9 — July 30, 2021 @ 9:31 PM
Phylis,,, To those of us who had been pushed to the edge of suicide & fateful smell of death but have learned the mistry behind the struggle on how to cope & live with epilepsy the hard way, your courageous willpower, brave determination & priceless commitment to carry on with your life & help your fellow human beings had been uplifting & inspiring experience to follow your footsteps & treasure every moment we come to visit this informative & educational forum.
All the precious time you spent building & updating this forum with priceless information is appreciated more than you will ever come to know.
Thank you for saving our lives.
Gerrie
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Comment by Gerrie — July 31, 2021 @ 7:14 AM
Thank you!
You provide so much valuable info and give us Hope.
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Comment by Tami — August 1, 2021 @ 2:16 AM
Thank you. I always enjoy your range of topics for people with epilepsy. It is nice they are kept short to encourage me to read them whenever and get so much information.
Best
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Comment by Colleen — September 7, 2021 @ 12:40 PM