Epilepsy Talk

Confessions of 30 Years with Epilepsy…  | March 2, 2022

When I was first diagnosed as a teen, no one knew what to do with me.

My parents refused to use the “E” word. 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.

The Dilantin made me feel like a zombie…I even went into a coma once.

And my beautiful, long hair was falling out.

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 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 amazed 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 had two heart attacks, was in a coma and on life support for 5 days. Then I was in the hospital itself for 5 days, until I was transferred to another hospital for rehab, followed by 4 weeks of out-patient.

But I still couldn’t button a shirt or tie my shoes, no less find the key board. 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. And I was better off than a lot of other people who had Cancer, Alzheimer’s, Cerebral Palsy, and Parkinson’s, to name a few.

So I decided to turn lemons into lemonade. I ditched my day job (I had my own freelance writing business for 35+ years) and I became a full-time epilepsy advocate…helping others like me and trying to teach the uninformed and misinformed, like so many people in my life had been.

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26 Comments »

  1. Thank you so much for sharing your story. It has helped in so many ways !

    Liked by 1 person

    Comment by Nancy — March 2, 2022 @ 11:40 AM

  2. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — March 2, 2022 @ 12:19 PM

  3. Thank you for everything that you do Phyllis.

    Liked by 1 person

    Comment by paleobird — March 2, 2022 @ 12:42 PM

  4. Reading you say ‘I felt like a zombie’ makes me feel a little better about feeling so ’empty headed’ for the first 23 years of my life. I finally collapsed when I was 18 and I can’t remember my childhood or how a teenager is supposed to feel. As soon as they took me off Dilantin some daily/weekly memory started to be easier BUT in 1998 the VNS implant was the answer. Oh I still take meds too…though life is much easier!

    Liked by 1 person

    Comment by leonchavarria — March 2, 2022 @ 2:08 PM

  5. I don’t think I’d like to remember my childhood or my teen years!!! 😉

    Like

    Comment by Phylis Feiner Johnson — March 2, 2022 @ 2:59 PM

    • Even though I went to First Unitarian Church I heard numerous words from the Bible I was agnostic. Though by about 1990 I read it often (now) sometimes each morning…. so I like your mention of Jesus. 6 years after I got the VNS I developed the confidence and compassion I wish I had years ago.

      Liked by 1 person

      Comment by leonchavarria — March 2, 2022 @ 5:49 PM

  6. I know the feeling, & for over 61 years of this hell, nothing ever seems to get better where people WILL just except you as you are. Guess it is why my favorite church hymns OR 1 OF THEM is JUST AS I AM, & I can be accepted by Jesus alone and yet every other person who just likes to be the judges of YOU, because you’re not just right after seeing you in a seizure, BUT you can count for a short time like bowling in league time, BUT to be asked to go bowl in a TOURNAMENT somewhere,, NEVER & you may be a good as to a better bowler than what they are. Call it KARMA or whatever they will reap what they sow as I try to live by the words of CHAPTER 12 in ROMANS, as God takes care of all the paybacks. Forget the dating thing in school or 40 years later, it’s all the same JUDGING OF OTHERS no matter what your age & how long you know what can be done & HOW to limit maybe the worse of all seizures to have happen, but they never want NOTHING to do with it, no matter how old you are or where you are when a seizure may be starting in their presence. ALL THE REASON WHY I want the rapture of Jesus Christ to happen like now or tomorrow. I’m ready for it, as I hope all of you are s well.

    Liked by 1 person

    Comment by James D — March 2, 2022 @ 4:46 PM

    • I am with you 100% as I’m sure others are. I established an engineering firm which was successful serving clients for almost 20 years ……UNTIL I had a partial seizure while speaking before 200+ attendees at an industry conference. In less than 6 months, word had spread throughout our firm’s client base and associated vendors, about this seizure. Our firm’s phone calls to clients were not returned. People who we thought were our friends in business, who referred us to potential clients, went away. Game over. Had to terminate offering services resulting in significant personal financial loss. I wasn’t surprised for all the same reasons you state above. Joe public has no idea how just one seizure can affect a person’s life forever. It’s really sad. I hope you’re doing well, James. I am just thankful I’m still alive.

      Liked by 2 people

      Comment by Roy Anthony — March 3, 2022 @ 1:48 PM

      • One of our members is a pastor and he was “relieved” of his congregation, because he had a seizure on the pulpit and they didn’t want to “scare” any church goers. Very Christian of them, eh?

        Like

        Comment by Phylis Feiner Johnson — March 3, 2022 @ 2:02 PM

      • Why did the people react like this to your seizure? I can’t wrap my head around it. I have partial epilepsy btw.

        Liked by 1 person

        Comment by Hetty Eliot — March 3, 2022 @ 9:53 PM

      • My naming of the seizure type in my reply was intended to be a brief term for partial complex. If all you’re dealing with is partial, you’re fortunate.

        Liked by 2 people

        Comment by Roy Anthony — March 9, 2022 @ 1:27 PM

      • Yeah I know what a partial is, I was just curious why people freaked out?

        Liked by 1 person

        Comment by Hetty Eliot — March 9, 2022 @ 1:52 PM

      • I mean to say partial complex

        Liked by 1 person

        Comment by Hetty Eliot — March 9, 2022 @ 1:53 PM

      • Because my career involved the investigation of why a given building had partially or fully collapsed. Quite often our projects had us 3 stories above the ground and sometimes beyond. If I had a seizure, I could have killed myself and/or others while gathering technical data on damaged construction materials, e.g. concrete. I’m sure our clientele base partially went away because they were afraid of being caught in the middle of a frivolous legal action.

        Liked by 2 people

        Comment by Roy Anthony — March 9, 2022 @ 2:13 PM

      • Oh I understand now. I’m very sorry.

        Liked by 1 person

        Comment by Hetty Eliot — March 9, 2022 @ 9:43 PM

      • People “freak out” because of religious beliefs of their own. I’ve gone through the “she’s cursed! She’s demonic”
        From having my Epileptic seizures. I’m still accused of being a drunk by strangers.
        First question I’ve been asked when I was trying to get myself to a wall after an Epileptic seizure and other people saw, knew and verbally told me that they had called for paramedics someone just said loudly within earshot of them was, “Have you been drinking?! Are you drunk?!”

        I’ve been yelled at by a male older “You’re DRUNK!” at my face after walking out of an Epileptic Seizure after triggered by Heat Exhaustion/environment doing errands in the Summer then being too taxing on my body that I collapsed.
        I was told to “ignore the idiot!” I’ll probably never see him again anyway, by people who I told about him.

        What about Cybercrimes? The Cyberbullies are taking advantage of the fact that I lived in my apartment with my Cat and took classes, volunteered, did errands(including groceries), knew enough around the Internet without compromising others and myself, but they still destroyed my computer, then my other internet devices!
        This was because of their own “game of thrones I added on “murder and abusers” because they triggered me to have Epileptic Seizures when I was in the Shower a lot and people broke into my apartment even to steal my MedicAlert jewelry…. That I had to replace. I was lucky I had enough to spare for MedicAlert…
        – My only complaint or question is why or how or when do they know how to contact “your” additional contacts?!
        If example you were in the hospital and they contacted wouldn’t you think the hospital would tell you so you could if possible contact them back?!

        I was put in Status Epilepticus never told if the hospital made the call to my additional contacts!
        People have been stealing those wallet cards from me since 2018 in the city I’m in!

        I need to call my family to let know that I am alive!
        People continued to steal their letters from my 2nd apartment and claim me dead!
        From rumors that I have being hearing!
        Heartless, don’t you think??

        These people claim to be something to me past or present!

        Even take advantage of the fact that I have been blogging and writing!

        Drumming and dancing and staying clean!

        Liked by 2 people

        Comment by Tabitha — March 10, 2022 @ 5:54 AM

      • Yikes that all sounds awful! I never had it that bad, lucky for me, but I remember quite well in middle school when I first starting having partial seizures (I didn’t know what they were) people would say I looked drunk or on drugs. It has stayed with me for two decades now..

        Liked by 1 person

        Comment by Hetty Eliot — March 10, 2022 @ 11:55 PM

  7. Thank you, Phylis! I appreciate all the information you provide. ❤️

    Liked by 2 people

    Comment by Kathy — March 2, 2022 @ 8:52 PM

  8. Hetty, the answer is simple and true: IGNORANCE! 😥

    Liked by 1 person

    Comment by Phylis Feiner Johnson — March 3, 2022 @ 11:24 PM

    • I just got out of the hospital yesterday and had to deal with quite a few people that work as nurses who who were quite ignorant to me and my Epilepsy!
      It was disgusting, and that was where my Neurologist worked?!

      I keep asking the same thing repeatedly in my head “Is this a nightmare? Is so please wake me up where I where I’m back in my apartment with my Cat, our belongings and I can still contact my family to say “I’m Alive!” And contact my friends and say Where the hell have you been?! I missed you to them all!!”

      I don’t know why this nightmare even started in the first place.
      Why are people still so ignorant of those who live with Epilepsy …

      Yet I have seen and have been asked and told about if I need help with my addictions (while I was in hospital just recently!) there are so many places and numbers that I could go to and call that she, the nurse would give them to me.

      My question was Did she read why I was brought to the hospital in the first place and then the second time? I had Two Atonic (Tonic Clonic) Epileptic
      Seizures in less then 24hrs!
      There’s someone who has been screwing up my medical records as well!!
      Haven’t the employees seen a change in the records?

      Especially after a certain date as well!!

      I’m so tired of being diagnosed with alcoholism or drug addiction WHEN I HAVE EPILEPSY DAMN IT!!!!

      Liked by 1 person

      Comment by Tabitha — March 4, 2022 @ 1:26 PM

  9. I never had a seizure in church, Thank God!! Because I was always the one carrying the cross during the service. Since I am Lutheran, and the Lutheran church is a liturgical denomination. That means I carried the cross several times during a service. Maybe I could have told the pastor about my seizures. But, All the kids who were supposed to volunteer for carrying the cross during the service, never did volunteer. So, I told the pastor I wanted to do it permanently. Because he needed dependability, not the ‘definite maybe’. So, That is what did for five years.until I moved after I got married.

    Liked by 1 person

    Comment by Christopher — March 4, 2022 @ 1:54 PM

  10. My last Atonic bloody Seizure was ironically on International Women’s Day.
    I found myself waking up on the sidewalk and people were walking around me as if I was invisible.

    I left blood on there after I finally having a hell of a time getting up after realizing a landmark was the right direction to where I was in!

    After being treated as I’m sure kids are without their parents, I can only guess now…
    People who have been cruel as they have been…
    I never called “911”.

    Liked by 1 person

    Comment by The same as above — March 10, 2022 @ 5:11 AM

    • People are afraid. And ignorant. Even family members. (As you can see from my story above.)

      And it’s to your credit that you had the resources within yourself to pick yourself up after the devastation.

      It’s no easy matter having epilepsy. Nor is it to be brave like you.

      Like

      Comment by Phylis Feiner Johnson — March 10, 2022 @ 9:54 AM

      • Epilepsy is never an “easy” life to walk in my boots or books. Losing those claiming to be friends then I found out what clothes they really wore after I was diagnosed because I couldn’t even have a conversation with them as I did before being diagnosed because of ignorance.
        It was forever so it felt before I made new friends, that couldn’t care that I lived with Epilepsy.
        Just as long as I kept doing as I was doing and keeping myself clean and healthy is what they cared about.

        Yet people who I don’t know continue to trash me and steal from me!
        Rumors I’ve heard is 1; I’m a woman who lived alone with her Cat.
        They didn’t like that so they trashed talked about me to someone listened…
        They gossiped, lied, spread rumors as if they were paid to or it they were 5 to 10 years old not knowing how much abuse they were causing to both my Fur baby which their breaking and entering was Abusive to wear my lil guy played when certain people weren’t around.
        My shower, bathroom was being used&abused when we were asleep. It was too hot they made it more hot and more difficult for me to wake up to call police or security.
        It got so horrific that my Cat and I Were separated by IdentityThefts “cops” even though the apartment was in my name on the lease, I was told that “it’s dangerous!”

        I don’t have a clue why I have been taken away and never listened to by the police in the city …

        Yet I am tired of “can’t you read the sign we’re closed at 4pm!!”
        One female cop in this city when I went to the closest station to ask a question about something after I had wound care after an Epileptic Seizure… Told me something that no officer male or female should say especially during Covid-19 but she told me to go back to the hospital and take more pills for my Epilepsy. Their closed for the day and contagious!!
        Then she walked out of the station to help the woman that just came and asked me what happened?

        I have people who I don’t want to know around me reading my snail mail, but I don’t receive it as of to this date!!

        I know that it’s a Federal offense the police where I lived did a mail fraud investigation starting a few years ago and possibly still going on.
        Do you know before the first Epileptic seizure that I had last week I was thinking about “if I don’t have any Seizures for a long time and my body might be able to heal and rest I would be finally able to get my hair cut.
        That same day, I had an Epileptic Seizure!

        All I’ve been hearing is that I don’t have Epilepsy!
        I heard that before 6-7 years ago when I lived in the apartment that most places I’ve been in, in this city call a “group home!”

        Why traumatize a person who went and survived through Hell just to drag the person through theirs in their addictions?!

        Like

        Comment by The Same As Yesterday And Today — March 11, 2022 @ 1:04 AM

    • Please note the following is not a complaint; just fact. You may wish to read my first post, above on March 3rd. This same happened to me when I had the seizure at the industry convention. People just walk around you as if you don’t exist. They don’t ask if they can help. In my case that day, no one called an EMT. All I remember is the convention moderator speaking loudly in front of all………”you need to sit down now! ” Within 10 minutes, virtually all 200+ attendees left the room without my hearing from anyone. You would think that someone would approach the person, privately, outside the conference room to ask if they were okay. That did not happen either. Again, no one wants to subject themselves to, the ill-informed chance of catching the “disease.”

      Liked by 1 person

      Comment by Roy Anthony — March 11, 2022 @ 4:12 PM

      • Gee, Roy. Didn’t you know that epilepsy is (NOT) catching? 😥 Or should I say “contagious”?

        Like

        Comment by Phylis Feiner Johnson — March 11, 2022 @ 4:50 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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