Epilepsy Talk
Anger and Epilepsy: WHY ME? | October 12, 2023
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 43 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.
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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About the author
Epilepsy Talk 
Thank you, thank you for this posting. Anger has been a sore spot since childhood. No connection between the diagnosis and anger came until many years later, when I learned that sometimes anger may not be just a reaction TO my condition, but part of the seizure activity itself. (Occasionally ecstasy is part of the seizure activity, which is a bit stranger. In both cases, I have learned not to tell everyone within hearing distance about it.)
As to “why now,” my susceptibility rises sharply in autumn. It has to do with “the color of the light,” and I have learned to be more careful.
One recent intervention has been qigong for anxiety, which is teaching me useful, simple ways of sitting with – or being with – these uncomfortable sensations that something unpleasant (neurological and/or emotional) is about to happen. Or is happening.
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Comment by HoDo — October 12, 2023 @ 10:41 AM
HoDo, you’ve always been a take charge person. And that goes with managing anger also.
I don’t doubt, like most of us, you are a victim in its clutches. But, I salute your self awareness, perspective and proactive attitude.
You’re the best example of a lady who takes charge of her life.
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Comment by Phylis Feiner Johnson — October 12, 2023 @ 10:49 AM
Not so sure about “lady.” 😸
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Comment by HoDo — October 12, 2023 @ 10:55 AM
At 68 I’m angry, even bitter, but it’s about how I’ve been treated, not my epilepsy, epilepsy is me, if you have to work or live with me its with my epilepsy, and don’t see me defined as an epileptic person I live in a country which is still ignorant, scared of epilepsy 3 years ago I wasn’t taken on as a volunteer in a charity shop as I’m too dangerous. That’s what’s made me angry, and embittered as charity shops here are mainly kept by cancer charities, they’ve all been rude to me even if I get work and cancer is seen as the primary illness, receiving all the funds, sympathy, research, if I try to explain epilepsy as a dangerous illness, like you having that heart attack, I get ‘attacked’ it’s so rude, saying cancer kills how dare you say epilepsy is so bad. Like so many others I tried to hide it at first until I did get so angry I wouldn’t crawl away like that any longer. I’m me, like anyone else I have to take a few pills. I try to run campaigns, try to get a time on any kind of media but never listened to, and people hide their epilepsy so well I don’t even know anyone else, one charity did try to start but finally gave up.. Here N Ireland, we don’t even have an epilpsy specialised center, we must go to England, with no follow up here unless you’re lucky to have a neuro who is willing to take you on
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Comment by Miss Gail Barry — October 15, 2023 @ 7:26 AM
Comment by Phylis Feiner Johnson — October 15, 2023 @ 10:13 AM
I volunteered at countless charities and they all turned me down. Even though I’m a professional writer.
(A fellow writer friend of mine joked:”Pretty sad when you can’t even give it away.”)
I got the opportunity to present at a local commerce organization. As I talked, everybody tucked into their lunch. They didn’t listen to one word.
It’s frustrating, infuriating, ignorant and shameful. No one cares. After all, you can’t cant die from epilepsy!
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Comment by Phylis Feiner Johnson — October 15, 2023 @ 10:28 AM
Thanks Phylis for this touchy topic. I’ve found that it is the volunteering part of having epilepsy that is just so frustrating.
I can’t give blood due to all the medications that I’m on. Before Epilepsy, it was a part of a monthly routine. You should have seen the nurse’s face when she asked if I was taking any medication for my Epilepsy.
But the one that is the most frustrating to me (and some of your readers know) is that I am a priest who at one time wanted to volunteer in local Episcopal Churches. It’s like it was the worst “sin” to have a potential seizure in church. Having cancer or almost any other horrible medical condition will usually get you some sympathy. I’ve found over the years that I am avoided when I “come out of the closet” of epilepsy. People know and then get scared, as if I am contagious. I gave up and simply sleep in on Sunday mornings now. The irony is that I am still a priest.
I have found, however, that the Running Group I am a part of is glad to have a “disabled” runner as a part of the group.
It’s just part of trying to volunteer that is the worst “Why Me” I’ve experienced. So I usually keep my mouth shut. I wonder if this does more harm than good. George
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Comment by George Choyce — October 17, 2023 @ 12:44 PM
Ah, the sacred church, holier than thou. Where they curse their brethren with indifference and ignorance.
But there are groups out there that both embrace you and your epilepsy.
Like your running group and the coffee “club”. A bastion of support.
No doubt about it. You’ve been dealt a shitty card. But you play against them, with dignity and perseverance.
I so admire you, George. And all that you stand for.
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Comment by Phylis Feiner Johnson — October 17, 2023 @ 3:48 PM
Love this subject…just have to say I am so tired of the sympathy and moneys that go to physical illnesses such as Cancer (not that I wish it on anyone) I lost my father to it. Hate to say it but I would rather deal with something like that then epilepsy and mental illness…nobody is a hero for dealing with those illnesses.
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Comment by Joanne Zimmer — October 19, 2023 @ 7:57 AM
These numbers may scare you, depress you, or stir you into action. Whatever your reaction, they’re inconvertibility true. From the Institute of Medicine, via the Epilepsy Therapy Project itself…
65 million…
Individuals in the world have epilepsy.
33 million…
The population of Canada.
54 million…
The population of France.
150,000…
New cases of epilepsy in the United States every year.
1 in 10,000…
Newly diagnosed epilepsy patients that will die from sudden unexpected death in epilepsy (SUDEP).
38…
Drugs that are available for epilepsy use world-wide.
7th…
The rank that epilepsy merits on the global burden of mental health, neurological and substance use disorders worldwide after Alzheimer’s, schizophrenia, and depression and alcohol use; but ahead of migraine, panic disorder, insomnia, post-traumatic stress, Parkinson’s disease, and multiple sclerosis.
2…
Number of antiepileptic drugs that needs to be tried and failed in order to be considered drug resistant to epilepsy.
1…
is the number of daytime seizures needed to trigger driving restrictions in every state in the U.S.
32…
days is the average waiting time for a new patient to see an epilepsy specialist.
25…
days waiting time on average for an inpatient evaluation to an epilepsy monitoring unit in the US.
166…
Number of epilepsy centers in the United States.
1 in every 26
Americans will develop epilepsy over the course of their lifetime.
by Joseph I. Sirven, MD
Editor-in-Chief, epilepsy.com
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Comment by Phylis Feiner Johnson — October 19, 2023 @ 10:50 AM
Thank you for contributing all the information that you do. You inform us and share your stories.
I always look forward to reading your post. ❤️
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Comment by Kathy — November 5, 2023 @ 9:32 PM
I somehow missed this one.
I am glad I found it now. Rose has hit another rough patch.
She is larger, we are older, I have a bad shoulder. We cannot move her like we used to. She broke her collarbone and had to have it repaired surgically. I am not MAD. I am weary. Your honest posts have been important to me over the years. Thank you Phylis.
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Comment by Flower Roberts — January 6, 2024 @ 12:36 PM
Oh Flower. I’m so sorry you’re going through this. If it’s any consolation, just know, you are not alone.
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Comment by Phylis Feiner Johnson — January 6, 2024 @ 1:57 PM