Epilepsy Talk

Anger and Epilepsy: WHY ME? | June 27, 2021

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 40 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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25 Comments »

  1. If your seizures originate, as mine do, in the temporal lobe / limbic system, the anger could BE the seizure, or part of it.

    As for the rest, to find oneself innocently stigmatized and often mistreated is surely just cause for anger. The trick is to use that upwelling of energy – NOT negative energy, just energy – for useful purposes. I am still learning.

    Liked by 1 person

    Comment by HoDo — June 27, 2021 @ 12:36 PM

  2. Oops, typo in the email. Let’s try again.

    Like

    Comment by HoDo — June 27, 2021 @ 12:37 PM

  3. I try to turn negative energy into positive energy (like starting Epilepsy Talk). But there are no easy answers.

    Like

    Comment by Phylis Feiner Johnson — June 27, 2021 @ 12:51 PM

    • It’s just energy, Phylis, like Old Faithful. The expression as anger may or may not be negative, depending on who is making the call. If we dislike ourselves, we may be more inclined to call it “negative.” IMNSHO.

      Liked by 1 person

      Comment by HoDo — June 27, 2021 @ 12:57 PM

  4. Phylis–Thank you! As a mother of a 20 year old female epileptic I read all that I can to try to understand all of what she maybe/is feeling. Your blog/posts/shared information is always a good jumping off point for me when doing research. Furthermore, I am appreciative of the personal sharing that you do.

    Liked by 1 person

    Comment by Anna — June 27, 2021 @ 2:46 PM

    • Standing with you and your daughter. Having epilepsy can be distancing and profoundly lonely. Please ask, here, what we might feel or have felt, and I’m sure there will be answers.

      I was raised in a conservative religious environment, so I thought – was told before diagnosis – was that I was sinful and wicked. Society provides some of that stigma as well. Your daughter may need reassurance that she is beloved, lovable.

      Every good wish to the both of you.

      Like

      Comment by HoDo — June 27, 2021 @ 4:10 PM

      • I was treated like a pariah. By a step-father surgeon and a step-mother psychologist. Ignorance and hatefulness know no bounds.

        Like

        Comment by Phylis Feiner Johnson — June 27, 2021 @ 7:40 PM

  5. You nailed it. That’s how I behave at times.

    Liked by 1 person

    Comment by prasadmok — June 27, 2021 @ 2:57 PM

  6. Having seizures CAN happen to anyone, so they say now. I can imagine how that can be today more than ever in my 61 years of life, seeing how any seizure can happen caused from the makers of chemicals they use in foods, drinks & drugs too. What increase of diagnosis for epilepsy in the past year & 6 months that they are not telling us today ? So yeah,, having to WORRY when you are in public & asking yourself & praying to God that no seizure happens to you while away from home, then 1 starts happening IF you get a warning / Aura. So when 5 to 15 minutes passes on & maybe another 15 minutes where you know nothing when the TONIC CLONIC / GRAND MAL event happens, that seems to be the only time in your life where people focus on you. Other times when you are 1 of the crowd, people see you & avoid you in the process, not looking at you as 1 of them, BUT if you do not drink alcohol & are 1 of them who do, then you are just there, and not much of a human because you have seizures. You do not need to go to the other social events to know when you may get noticed by the 1st think they may think of when they see you, yet they may wonder if they do not see you WHY you are not there, but you never get a phone cal asking you what’s been happening. Social foods, forget them, as if we are to only watch what we drink, we better WATCH what we eat as well, as they all are out to destroy brain chemistry in everything & everyone in ”everything we consume” as thankfully some people are out there, who ”are aware” of that & do not want 1 person doubting what they had for a meal effected their brain chemistry or/and heart health too. So,,, Can you be part of the public, or ANY group, only to have a seizure later by being part of their group, just to be rejected later or not respected later if they decide to include you ? Then if you leave them because you feel less respect, then they are happier you’re gone.

    Liked by 1 person

    Comment by James D — June 27, 2021 @ 5:22 PM

  7. GOD AND MY HUSBAND HAS HELPED ME WITH MY ANGER.MY HUSBAND OF 23 YEARS HE IS MY SUPPORT AND MY BEST FRIEND.AND GOD REMINDS ME THERE IS ALOT OF PEOPLE THAT ARE ALOT WORSE THAN ME.SO THAT’S HOW I LET GO OF MY ANGER AND TURN IT IN TO JOY.

    Liked by 1 person

    Comment by Angela Cartet — June 27, 2021 @ 8:08 PM

  8. They say that if everybody put their troubles in a circle and then were let loose to claim them — they would claim their own.

    Like

    Comment by Phylis Feiner Johnson — June 27, 2021 @ 9:02 PM

  9. Great topic, Phylis. Support Groups about our neurological disorder – whether in person or via the internet – are usually healthy places to blow off some steam and help diminish our anger. Epilepsy Talk sure is.
    Epilepsy can be so infuriating on so many levels: medically, personally, spiritually, etc … So many of us have been through them all. If you have a neurologist, a family, a faith community, a place of employment that is not supportive, it makes it so much tougher to simply live with epilepsy. Your personal life examples and the above examples bear witness to that.
    Here’s another one that others may be able to relate to – one of my anti-seizure medications gives warnings on the label about mood swings. Well, my mood swings would usually end up on the angry side of the spectrum. Literally, thank God, there was no physical injury caused. But arguments could flare up quite quickly. To make matters worse, this medication was actually controlling my seizures. So I was angry times two. I did, however, call my neurologist (an epileptologist) and let him know of what was going on and he said in a compassionate manner, “We don’t want that so let’s try something else.” So far, so good on my new medication. Whew.

    Liked by 1 person

    Comment by George Choyce — June 28, 2021 @ 11:32 AM

    • Wonderful that you had a doc who listened to you and was responsive.

      The anger must have been living hell — for you — and those around you. Especially since the meds WERE controlling your seizures.

      How frustrating.

      Oh George, I’m so thankful you got to a better place. I wish that for everyone. Near and dear.

      Like

      Comment by Phylis Feiner Johnson — June 28, 2021 @ 4:32 PM

  10. Deeply concerned with not knowing when & where your seizures are going to strike you unconscious & knock you out like a ghost is already emotionally draining & infuriating enough, while coping with the side effects of the medications, helpless family, incompetent medical establishments & misconceptions of society can certainly push people to build up deep emotional resentment waiting to explode like a time bomb in anger.
    Therefore having reliable source of emotional support, it can be helpful to know on how to defuse, deconstruct & dissolve the emotional pile of deep resentment leading to the anger, by connecting with professional treatment with psychiatrists capable of understanding your feelings.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — June 28, 2021 @ 1:55 PM

  11. You’re right, Gerrie. It’s a pretty deep emotional pile.

    I know that, for my part, I started a support group with my local Epilepsy Foundation which is a wonderful source of support and caring.

    I also have been seeing a therapist for umpteen years.

    Trying to shoulder the burden alone was not successful. In fact, it ended up in a suicide attempt. (And then, Epilepsy Talk!)

    So, I am no longer shy of turning to others both to give and receive support.

    Every breath I put into Epilepsy Talk, I get in return — two fold.

    I hold you all dear to my heart.

    Like

    Comment by Phylis Feiner Johnson — June 28, 2021 @ 4:40 PM

  12. Phylis and Gerrie, you are so lucky to have found psychological help. I have now accepted that I will have to sign a release of liability form if I want to get treatment, Therapists are scared of the unknown effects of a seizure. Have you had to sign these?

    Liked by 1 person

    Comment by skolly9 — June 28, 2021 @ 8:06 PM

    • OMG, no. And I tried to kill myself under my psychiatrist’s care. He was nothing short of wonderful.

      Came to the hospital every day. Counseled Arthur. And even suggested the next step of my life…if I survived.

      I did. And I ended up doing what he suggested. Caring and counseling others. There’s been nothing in my life more important to me than helping people.

      So, he suggested to Arthur that I take that on as my job. And I have.

      I hope I’ve lived up to his expectations with you all.

      Like

      Comment by Phylis Feiner Johnson — June 28, 2021 @ 9:43 PM

    • Knowing nothing about the chronic neurological disorder, in the very beginning of my ordeal to live with epilepsy, I deeply resented & refused the interference of my family & medical establishments into my privacy & personal life, believing that there’s nothing wrong with me that I can’t manage on my own like I always did.
      While I continued to detest the unwanted interference, feeling burden to my family prevented me from facing the bitter truth that I should seek help to deal with my medical hardships & emotional turmoil.
      But the persistence of my seizures have thought me to gradually accept the unfortunate predicament of the medical hardships I had to live with & appreciate all my family’s efforts to come to my rescue whenever I ended up struck with another seizure to languish in hospital beds for days.
      In the process of learning more about my seizures, I found it very important to share my experience with my family, various Neurologists, primary doctors, nurses, emergency medical rescue technician,,, who seem to have extensive wealth of information on how take various steps to find out & cope with my seizures, helping me defuse the emotional pile of frustration & anger over my seizures & social isolation.
      Having come to terms with accepting the neurological disorder & the emotional consequences of the disorder I got to live with, I believe I managed to avoid the need for psychiatric assistance to cope with the emotional turmoil of frustration & anger.
      Thanks to EpilepsyTalk, I learned on how to openly discuss about my medical hardships & emotional turmoil with many people who live in the same condition I got to live with, a whole lot pile of frustrations had been unloaded off my shoulders, helping me to dissolve my anger.
      Gerrie

      Liked by 1 person

      Comment by Gerrie — June 29, 2021 @ 12:23 AM

    • Skolly9,,, Have you ever consulted your Neurologist to help you find reliable psychologist/Psychiatrist who had been working together with him/her to assist his patients with the emotional turmoil of coping with Epilepsy?
      The psychiatrist knowing & working with your Neurologist may have more confidence in taking you in without complicating the process of singing up for psychological assistance to cope with the emotional impact of Epilepsy.
      Best wishes!
      Gerrie

      Liked by 1 person

      Comment by Gerrie — June 29, 2021 @ 4:22 PM

  13. It seems to me that anger and depression are flip sides of the same coin. To the extent that one can choose, anger is, not exactly more fun, but it gives one a sense of having more agency, more voice. When I’m really depressed, I don’t show up. When I’m angry, there’s always the possibility of bad trouble. Middle ground seems impossible. But maybe that’s just me and my brain, dancing or sitting it out.

    Liked by 1 person

    Comment by HoDo — June 28, 2021 @ 8:12 PM

  14. I also go to ground when I’m depressed. Can’t face it or anyone else.

    Like

    Comment by Phylis Feiner Johnson — June 28, 2021 @ 9:44 PM

  15. Thank you for your suggestion, Gerrie. Sadly, many times I have asked my Neurologists for referrals but they have all seemed quite hesitant. Ironic since they were also trained in psychiatry! lol

    Liked by 1 person

    Comment by skolly9 — June 30, 2021 @ 11:45 PM

    • This is not by way of suggesting a cure, but a companion in the journey: anger of the sort we’re describing here seems to me an arising of neutral energy which we express in ways that are seen to be negative by ourselves and by others. It also feels addictive, because I have trouble stopping.

      There is no 12-step program for anger, but I find reading and considering the Buddhist 8-step addiction program to be useful. It offers me a more useful way to look at how I move through the world, or sometimes refuse to move. No religion is required, just interest.

      Liked by 1 person

      Comment by HoDo — July 1, 2021 @ 1:51 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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