Epilepsy Talk

Anger and Epilepsy: WHY ME? | April 8, 2019

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.

Guys never called back for a second date. (And I was pretty!)

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 39 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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30 Comments »

  1. I used to contribute regularly to your chat, Phylis. I really appreciate so much everything you say to support us all. I haven’t been obviously on for quite a long time as things have been very hard over the past few months and I just didn’t have the energy to write logically. My recent problems have been with the post seizure emotional side – the tears, the irritation and sometimes the real anger – which is a very unusual event for me. The bursting into tears at the drop of a hat was/is awful.
    As for everything else you alk about – i have been fortunate that I have never had to experience some of the worst aspects of it – but I can certainly identify with parts of it. Things are possibly on th u pright now – fingers crossed but I am not going to count my chickens before they are hatched. Till pretty soon i hope!!

    Liked by 1 person

    Comment by Margaret Hay — April 8, 2019 @ 4:07 PM

    • Margaret, I’ve missed you so very much.

      And I’m sad to hear things have been so bad and unmanageable.

      If there’s anything in my power that I could do for you, I would.

      But know that you’re on my mind and in my heart.

      Wishing you happier days ahead.

      Like

      Comment by Phylis Feiner Johnson — April 8, 2019 @ 4:56 PM

  2. Sadly the worst of the generational attitudes appear in your life story yet again Phylis. It would be nice to say none of that exists any more but although it’s much improved- I’m certainly aware of the changes over the last 30 years- and keeps improving, old attitudes die hard 😦

    I’ve suffered badly with post-ictal mood problems, and more seriously, post-ictal suicidality (the internet sometimes has it’s uses- I was able to find a number of medical journal articles on the subject so know it’s a real thing) which, despite a clearly obvious constantly the same pattern, was not considered neurological for many years. It resulted in many run-ins with the police and the Mental Health Act. A drug tweak seems to have resolved the worst of it but it’s starting to creep back in a bit which has me terrified.

    There was one aspect to the mood changes I no longer get and kind of miss a bit though. During the prodromes I would go a bit manic and clean everything- the only time I couple ever get the housework done properly!

    Liked by 2 people

    Comment by Katie — April 8, 2019 @ 7:23 PM

    • Yes, suicide is very real. I’ve been there.

      I took a contraindicated drug and ended up having two heart attacks before they put put me into an induced coma.

      It took me three months to recover and the result was a change in life, a change in priorities.

      It was time to “give back,” as a thanks for living.

      And so Epilepsy Talk was born.

      This article may interest you:

      Suicide and Epilepsy

      https://epilepsytalk.com/2016/06/12/suicide-and-epilepsy/

      Like

      Comment by Phylis Feiner Johnson — April 8, 2019 @ 9:17 PM

  3. You never GET EVEN,, you get ONE BETTER, as the people who believe they are so much better, smarter & surely more popular than we are, have no idea what to do if the same things that happens to people like us, happens to them. Sure we are to do good to our enemies, which I say & ask to,, Doesn’t everyone who inhales & exhales are to reap what they sow, & reap more of what they sow ? Galatians 6: 7-10 says this, so let these people think as they do about us. We are not making them think how they do, & I do not care what anyone thinks of me when they know I have seizures, & can not be part of the so called NORMAL crowd, even if they would be family who may look at me as if i am never good enough or as good as they THINK they are.

    Liked by 1 person

    Comment by C D — April 8, 2019 @ 8:08 PM

  4. I have had epilepsy all of my life and have learned to deal with it, participate in sports, graduated from high school and college. It was after I got into the real world that I found out that if you are honest to your employer in telling him what they are taking on, that they would give you a break. Boy WAS I WRONG, TWICE. Laid off due to the lack of work! But the Angel of a woman who married me before all this started, for 42 years has been by my side through out it all.
    Phyllis, I have just one question, after 42 years, she wants to have a day to her own. But that leaves me alone by myself and scared of what may happen. Any suggestions?

    Liked by 1 person

    Comment by Curtis McMurtrey — April 8, 2019 @ 10:52 PM

    • Is it that she lovingly wants to test you as an act of courage?

      Or does she just need some alone time?

      How about if you spend the day with someone else?

      Alone time for her is easy to arrange. She could and she should.

      But that doesn’t mean you have to be alone.

      Like

      Comment by Phylis Feiner Johnson — April 9, 2019 @ 8:08 AM

      • We know no one else. We are a strangers to this place and our children are too busy with their own families . In other words, no one

        Liked by 1 person

        Comment by Curtis McMurtrey — April 9, 2019 @ 12:24 PM

      • I really don’t know what to say, other than hire a care giver for the day. 😦

        How about a neighbor?

        Do you belong to a neighborhood church?

        Like

        Comment by Phylis Feiner Johnson — April 9, 2019 @ 12:48 PM

  5. My son has conversion non-epileptic seizures and almost died 2 years ago, coma for 3 days sent home with 3 Aeds even with the PNES diagnosis.. Now he gets treated so bad at ER. I have a question, his lactic acid was 4.2 from an arterial line after the last set of seizures. his seizure dr said that it is normal for his oxygen to be low when I asked about this test result. what does elevated latic acid mean. Any help appreciated!

    Liked by 1 person

    Comment by harmonyart1 — April 8, 2019 @ 11:24 PM

    • Also, thank you for writing about post ictal mood swings and anger. my son also suffers so much from tears, anger and upset. He is 31 and in a wheelchair from all the falls and back injuries.

      Liked by 1 person

      Comment by harmonyart1 — April 8, 2019 @ 11:50 PM

      • Boy, that would make anybody angry at life.

        So many are dealt an unfair deck of cards.

        I’m sure he must wonder “Why Me?”

        Like

        Comment by Phylis Feiner Johnson — April 9, 2019 @ 8:46 AM

    • If your lactic acid level is high, it could be caused by a number of things. Most often, it’s because you have a condition that makes it hard for you to breathe in enough oxygen.

      A higher-than-normal lactic acid level in your blood can also be a sign of problems with your metabolism.

      Elevated lactic acid levels can also mean you’re not getting enough vitamin B1.

      Like

      Comment by Phylis Feiner Johnson — April 9, 2019 @ 8:25 AM

  6. It is certainly not easy being epileptic but there are other medical problems that are frankly worse. It is also not easy being unattractive, awkward, mentally challenged or physically challenged in a society that values looks, intelligence, athleticism and so on.

    Remaining positive as an epileptic is not always easy but in my case I know I am lucky. I have access to doctors and dilantin, which despite it cripling side effects at least enabled me to mask my condition and have a successful marriage and career. It wasn’t easy but it was possible.

    I am a great believer in the value of exercise, calorie control, a largely plant based diet and mindful meditation as aids to overall health and to limiting stress, anxiety and anger. I also found that doing volunteer work after I retired gave me a hightened sense of purpose.

    I worked for many years as a pampered expatriate in parts of the so called third world in Africa and Asia. Imagine having limited access to clean water, and to health care. Imagine being under nourished, suffering from malaria, debilitating parasites and poverty. Epileptics in parts of the third world have to try to survive under such conditions. So yes, I consider myself lucky, very very lucky. And aren’t we all lucky to a greater or lesser degree?

    Best wishes

    Liked by 2 people

    Comment by Michael H — April 8, 2019 @ 11:47 PM

    • Yes, Michael.

      At my lowest point, I definitely didn’t want to be “here”.

      Now, I feel lucky to be alive. Here and now.

      Hats of to you for your positivity, your productivity and can-do attitude!

      With admiration…

      Like

      Comment by Phylis Feiner Johnson — April 9, 2019 @ 8:45 AM

  7. Bravo! I totally agree with you and Phylis,
    yes, there are always blessings to be found in our adversity.

    Liked by 1 person

    Comment by vhealing — April 9, 2019 @ 1:30 AM

  8. Nicely written. Would love to read more and contribute some stories as well.

    Liked by 1 person

    Comment by Bill Glassman — April 9, 2019 @ 10:10 AM

    • Thank you Bill.

      Please feel free to join us.

      If you want to subscribe and receive articles as they are published, simply go to the bottom of the right column, enter your email and hit “Follow”

      Like

      Comment by Phylis Feiner Johnson — April 9, 2019 @ 10:45 AM

  9. The “Why me?” and “Why is God punishing me?” were early stages in my steps of the acceptance of my epilepsy.

    I assume that everybody goes through this stage, but this too shall pass.

    Liked by 1 person

    Comment by howdydave — April 9, 2019 @ 11:58 AM

  10. I have never felt the feeling of “why me” related to epilepsy or my disabilities. What pisses me off is the stigma, indifference and fear associated with “differentness” or being seen as “different”. I’m really tired.

    Liked by 1 person

    Comment by skolly9 — April 9, 2019 @ 11:14 PM

    • The stigma of being “different”, I think, has plagued most of us.

      The feeling of being signaled out, discrimination, or even just being ignored.

      It’s something we deal with, sometimes with family, someone with friends, most times with strangers.

      Hopefully, you have some sort of support from those around you who care about you and love you.

      Like

      Comment by Phylis Feiner Johnson — April 10, 2019 @ 9:55 AM

  11. Thank you! I learned about this article through my housemate who has epilepsy. I have been steadily losing my strong body due to MS. My housemate and I can completely relate to each other (you don’t LOOK sick! ) I appreciate your candor and humility. This is part of our story. Not the whole dang deal! Thanks for navigating beyond anger! Best to you and thank you again

    Liked by 1 person

    Comment by Katherine Murdoch — April 10, 2019 @ 6:36 PM

    • Thank you so much for the compliment and I’m so glad you found us!

      Thanks for dropping by.

      If you’d like to subscribe to Epilepsy Talk, simply go to the bottom of the right column, enter your email address and hit “Follow”

      Wishing you both all good things!

      Like

      Comment by Phylis Feiner Johnson — April 11, 2019 @ 8:56 AM

  12. Yes, I am supported and loved and it doesn’t take very long to get out of my funk after volunteering at a local food pantry or homeless shelter, or going to the library or traveling on the subway. It’s truly humbling and puts ones own life in perspective, for sure.

    Liked by 1 person

    Comment by skolly9 — April 10, 2019 @ 7:32 PM


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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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