Epilepsy Talk
Anger and Epilepsy: WHY ME? | July 25, 2022
Suddenly, you’re feeling edgy. Lashing out at loved ones for no reason at all. It’s not anybody’s fault. It’s that old familiar enemy. Epilepsy. Again.
Why me? Why now? It’s not fair.
No, it’s not, but it’s part of our physiology. Since the brain is control central, sudden changes – like a seizure – wreak havoc. And you get even angrier, for what seems, like nothing at all. The outbursts, crying, come out of nowhere.
But they’re giving you a warning.
I used to get my red alert when my mouth filled up with saliva. (It was disgusting.) I’d hit the floor and close the door – if I could. Of course when I was drowning, or falling down the stairs, or walking face first into a wall, there wasn’t much I could do. (Except have my nose repaired twice.)
And no one around knew what to do.
My parents refused to use the “E” word, which made me furious. People treated me like I was some kind of pariah which didn’t make me feel warm and fuzzy either.
The Dilantin made me feel like a zombie. I even went into a coma once. And my beautiful, long hair was falling out.
Was I angry? You bet!
I couldn’t drive, couldn’t participate in athletics, couldn’t even get through a date.
I constantly had to lie. Or else no one would hire me. (Not good for their health insurance.) And I was constantly on my guard.
One day, the copy machine next to my office caught on fire.
Everyone was evacuated from the building while I was laying on the floor of my office (with the door closed), out cold. When I came out, I innocently asked “where’s the copy machine.” They all looked at me like I was from Mars.
So I quickly had to make up some lame story. I was mad. And exhausted. I couldn’t even have a seizure in peace.
Epilepsy was my dirty secret. Like it or not…
Until one night, I had a flaming seizure on a date and the guy was so sweet and gentle and considerate, I couldn’t believe it. Kind to ME? Little old damaged me? I was floored and said to myself: “He’s a keeper!” And he has been for 42 years.
Then, a few years ago, I almost died. My heart stopped. I was in a coma and on life support — followed by 5 days in the hospital — until I was transferred to another hospital for rehab, and then 4 weeks of out-patient care.
But I still couldn’t button a shirt or tie my shoes, no less find the keyboard. 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.
No, I wasn’t mad any more. Instead, I found the perfect outlet. I ditched my day job (I had my own freelance writing business for 25+ years) and said bye-bye to my anger. And I became a full-time epilepsy advocate.
“Don’t get mad. Get even!”
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Epilepsy Talk 
Today I’m angry, feeling sad and bad.
We just came home from the funeral of our best friend.
My mouth is filled with saliva. My heart is filled with tears.
Sometimes life is so mean, you can’t help but feel angry.
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Comment by Phylis Feiner Johnson — July 25, 2022 @ 5:06 PM
So sorry to hear Phyllis! This weekend seemed to be an extra sad one for alot of folks….. watching the fights on Saturday night and one of the main fighters gave a shout out to a friend that had just committed suicide!
Then I had a friend call right after that fight and tell me one of her elementary school friends died on Saturday morning! Now you sharing your experience with your friend! UGH!
I hope you feel better! *hugs*
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Comment by Aaron Holmes — July 25, 2022 @ 5:23 PM
I howl with you.
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Comment by HoDo — July 25, 2022 @ 7:13 PM
We are all in the same boat, I know how you feel. I just think life is not worth living! What FOR! We have no cure! I have gone through everything, major surgery and still no solution! What do we have to live for? We are trap in this body!! It is not FAIR!!
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Comment by TOM WHITE — July 25, 2022 @ 7:18 PM
Having attempted to go to the other side (and failing), I appreciate your anger and frustration.
Why be miserable in life if you can be peaceful in death? My reason is that we each have a mission being here.
If nothing else: to love and be loved.
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Comment by Phylis Feiner Johnson — July 25, 2022 @ 7:50 PM
To My Dear Friend, What is the Best WAY to stop the epilepsy, either with which newest medication or BEST brain surgery other than temporal lobel surgery which has already been done? Does anyone Have a answer to This, Please?. Take Care.
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Comment by TOM WHITE — July 25, 2022 @ 11:39 PM
So How is it ? that people who never suffered or lived with seizures / Epilepsy, has all the answers & they seem to be the experts at JUDGING US who do live with seizures that never gets their final STOP SIGN to end damaging of brain chemistry to any of us ? Very few, as I can count on 1 hand who I know really knows me, except for who I may know who has something in common with me like BOWLING, thought they have seen me in a seizure some of them 3 times, & yet I am & never will be as good as they are. I never think I am any better than a drunk / alcoholic, or a drug user, who gets high once a week or every night, but I HAVE SEIZURES !!! You bet you can never be around any of the crowds of this world today, even 55 years ago that same things were thought about then when you were a kid living with seizures. BUT God & Jesus Christ has never left me alone, even at times when I thought I have nobody to help me. One day some of those people will only wish to know what I know today, as I may not need to have their millions, and I will never have a U-HAUL in my funeral session One thing I know for sure, is that THEY will be judged just as they judged me,,1000X’s more by God alone. So let them have their self made glory of themselves, and have the same come back to them down the road. Not going to effect my life at all. James D
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Comment by James D — July 25, 2022 @ 7:30 PM
There was no U-Haul at Alan’s funeral today. Just the genuine tears of those who respected him, valued him and loved him for the kind, generous soul that he was.
He will be forever in my heart. Even when I’m done being angry and sad. Even if I don’t have seizures.
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Comment by Phylis Feiner Johnson — July 25, 2022 @ 7:44 PM
Tom White, some people show great progress with the new med Xcopri. Others do get relief from meds and/or surgery. It’s not a promise, but a hope.
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Comment by Phylis Feiner Johnson — July 26, 2022 @ 9:16 AM
Thank you for sharing. Your story helps all of us.
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Comment by Joyce Phillips — July 26, 2022 @ 11:03 AM
XCOPRI has been helping me to stay seizure free for almost 9 months. I did use the starter package that my neurologist gave to me, and I noticed when taking the different pills how the 50MG tablet made me feel the BEST, and all the others were not so great. After looking up EVERYTHING in those tablets, ALUMINUM was in all those except for the 50MG TABLET, and I am never going to take any of those others but the 50MG tablet. When people tell me how GOOD ALUMINUM IS FOR THE BRAIN then tell me, which nobody will say what it is good for because it is not good for anything, except getting DEMENTIA & ALZHEIMER’S disease. If you were wondering why memory is bad, & are taking GENERIC AED’s odds are you have been getting ALUMINUM in your drugs, & the brain chemistry is not helping any seizures to be reduced or stop. Go to nlm.nih.gov & type in whatever drug you need to know about.
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Comment by James D — July 26, 2022 @ 6:09 PM
Mission? I have no idea! Anger? Guilt? Frustration? Sadness? Loneliness? Fear? Depression? All part of my daily routine!
Went to town for my monthly food shopping trip and while I was shopping in the grocery store a woman collapsed right in front of me having a grand mal seizure! I was literally 10feet away and the only person in the aisle!…. I ran to aid her and yelled out for help and a woman came around the corner to help me…. first thing she said, “Shes having a seizure, I know, I’m epileptic!” I replied, “I know, me too!”
We stayed with her until she came to, helped her up and got her seated and she began to tell us that she couldnt believe she had a seizure because she hadnt had one in years!
What are the odds she would have one right then and there after several years, and the first 2 people that came to her aid were also epileptic? My spirit reminds me there are no coincidences, my scientist reminds me of the math of higher populations and more humans having neurological problems!
Either way Im glad I was there! Even though its the first person Ive seen have a seizure since I was diagnosed 15 years ago, and its been one of my worst fears!
The Universe hands us all kinds of situations, everyone falls down, its about how ya get back up that matters!
Blessings and good luck to all!
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Comment by Aaron Holmes — October 20, 2022 @ 6:08 PM
Something similar happened with me. I was meeting a long distance epilepsy friend from Boston at Amtrak Station, NYC.
Trudging along, looking for an elevator, we saw a homeless lady, surrounded by a crowd on the platform, thrashing around with a seizure.
People got the gist of what was going on-more or less. But they were absolutely terrified.
And we were terrified that she was going to roll onto the tracks.
Of course, we did all the first aid stuff while pulling her away from the platform edge and screaming for assistance.
As you said: “What were the chances?”
Two epilepsy “friends” who had just met, stumbling across a homeless lady on the train platform, having the mother of all seizures?
There are happenstances, miracles and some things that were just meant to be.
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Comment by Phylis Feiner Johnson — October 20, 2022 @ 9:53 PM
Something similar happened with me. I was meeting a long distance epilepsy friend from Boston at Amtrak Station, NYC.
Trudging along, looking for an elevator, we saw a homeless lady, surrounded by a crowd on the platform, thrashing around with a seizure.
People got the gist of what was going on-more or less. But they were absolutely terrified.
And we were terrified that she was going to roll onto the tracks.
Of course, we did all the first aid stuff while pulling her away from platform edge and screaming for assistance.
As you said: “What were the chances?”
Two epilepsy “friends” who had just met, stumbling across a homeless lady on the train platform, having the mother of all seizures?
There are happenstances, miracles and some things that were just meant to be.
LikeLike
Comment by Phylis Feiner Johnson — October 21, 2022 @ 2:48 PM