Epilepsy Talk

Confessions of 30 Years with Epilepsy… | September 26, 2019

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 39 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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41 Comments »

  1. Great post, as always.

    Liked by 1 person

    Comment by figsy1hotmailcom — September 26, 2019 @ 6:22 PM

    • Thank you!

      Like

      Comment by Phylis Feiner Johnson — September 26, 2019 @ 6:45 PM

      • I enjoy your eriting snd journey. My son is 51. I am sitting in er and norsh shore hospital. After six months of no seizures to speak of on tursday brian had a gran mal seizure after lunch. Yesterday he was ictsl all day amd was shaking of lips, eylids and just not right. He was administered adavsn amd today seems better. Doctor recomends eeg for amfew days. So moved from plainview hospitsl to norsh shore. Waiting in er for eeg room. Jmason

        Liked by 1 person

        Comment by Joel mason — September 26, 2019 @ 7:13 PM

  2. Are you part of the dilantin law suit.

    Get Outlook for Android

    ________________________________

    Like

    Comment by Joel Mason — September 26, 2019 @ 7:04 PM

  3. Had my first clonic-tonic at 16 (I’m 47, now….) and your essay resonated. Thank you so much for writing this!

    Liked by 1 person

    Comment by Vivacia K. Ahwen and Rachel Robbins — September 26, 2019 @ 7:05 PM

  4. Well you know, often we all go through this “together”.

    Like

    Comment by Phylis Feiner Johnson — September 26, 2019 @ 7:06 PM

  5. Thank you for sharing your story with us and your positive perspective at the end . You’re writing has helped me learn so much and I will be a stronger advocate for my husband because of you and the knowledge you share.

    Thank you so very much!

    Liked by 1 person

    Comment by Peggy Beller — September 26, 2019 @ 9:08 PM

  6. Joel Mason, you are in my thoughts and in my heart.

    Perhaps this article will define your testing options:

    Beyond EEGs — Diagnostic Tools for Epilepsy

    https://epilepsytalk.com/2017/02/23/beyond-eegs-diagnostic-tools-for-epilepsy/

    Like

    Comment by Phylis Feiner Johnson — September 26, 2019 @ 9:54 PM

  7. Wow can I relate. There’s no secrets anymore. I’m becoming an advocate too for those I see like myself now that I’m semi retired. The fears turned to anger. The anger is now productive. I don’t have to be a victim but I can sure fight for everyone else, as 1 in 7 Americans have had some form of seizures. Wake up
    America!

    Liked by 1 person

    Comment by Jamie Swayze — September 26, 2019 @ 11:51 PM

    • Good for you Jaime! The world needs more people like you.

      I admire your pro-active attitude and can-do credo.

      Turn those lemons into lemonade!!!

      Like

      Comment by Phylis Feiner Johnson — September 27, 2019 @ 9:43 AM

  8. Because of your article about “seizure watches” and the Danny Did Foundation . . . my son (age 54) now has an “Inspyre” watch. It gives us both confidence and peace of mind. Thank you for your wonderful work.

    Liked by 1 person

    Comment by Ann Supplee — September 27, 2019 @ 8:24 AM

  9. Amazing life story of determination and will power.Thanks for sharing. I hope that newly diagnosed young people and parents get a chance to read it.

    Liked by 1 person

    Comment by Tom — September 27, 2019 @ 8:35 AM

  10. I recently had an eeg. The nurse was fantastic, informing me that seizures are not so isolated and that there are quite a few people that suffer from them. That made me feel so much more relaxed and I got through the eeg without all the anxiety I usually feel. A shout out to all the health care workers who show they really do care.

    Liked by 1 person

    Comment by Regina Lovelace — September 27, 2019 @ 2:33 PM

  11. Nurses (and health care workers) are our unsung heroes.

    Like

    Comment by Phylis Feiner Johnson — September 27, 2019 @ 2:38 PM

  12. I keep having these short strange feelings and I don’t know what to do about them. I’ve had two for the day now. Im a little scared because I not my license taken away on the 11th because I had a seizure in drive thru, and hit a parked car with no one inside praise God. This illness has ruined my life.

    Liked by 2 people

    Comment by jjayp75 — September 27, 2019 @ 6:06 PM

    • Has anyone have these feelings which I’m speaking of. If sho please educate me on them

      Liked by 1 person

      Comment by jjayp75 — September 27, 2019 @ 6:18 PM

      • Absence Seizure (“Petit Mal”)

        Absence seizures account for 2-4 percent of epilepsy. They are characterized by brief episodes of staring, usually lasting only 2-10 seconds and may happen repeatedly during the day.

        There is no warning before a seizure and the person is completely alert afterwards, with no memory of it.

        Because they are so mild, you might not even realize you had one and it’s easily not noticed by those around you.

        Like

        Comment by Phylis Feiner Johnson — September 27, 2019 @ 6:42 PM

    • I would guess they’re absence seizures and I suggest you stay off the road.

      I drove my mother’s car around a cement pillar when I was younger.

      And even though my seizures are 99% controlled, I recently drove my car into the back wall of the garage. 😦

      Like

      Comment by Phylis Feiner Johnson — September 27, 2019 @ 6:40 PM

      • I’ve been changed from 3 different medications now. I handed tremors in my hands that won’t stop. Short term memory lose is at it’s highest. My Neurologist has for me to apply for disability and to get an attorney. I feel heart broken and just damaged. Family and friends have really made me feel useless. I can’t do anything on my own. My last job released me because they said, I was a liability. It hurts when I open my eyes in the morning because every morning when I wake up it takes me a moment to realize who I am. I try my best no to fall asleep because test showed that I have them in my sleep as well.

        Liked by 1 person

        Comment by jjayp75 — September 27, 2019 @ 6:54 PM

    • Met a great doctor today at north shore university hospital. They have 8 bed special set up for eeg testing. They know all the ,eds and have seen ot sll. Hoping to see results. May be here a week ormso. Dr has videp of monitors at office and home so doesnt miss a seizure. Happy to be here.

      Liked by 1 person

      Comment by Joel Mason — September 27, 2019 @ 9:56 PM

  13. Oh Jay, I know it’s painful and depressing.

    But in your case, disability (with a lawyer) sounds sensible.

    Nocturnal seizures are the pits, because it’s often hard to diagnose them, except for unusual movements at night, confusion upon awakening, bed wetting or falling out of bed.

    Some people don’t even know they have them, although 7.5 percent to 45 percent of people who have epilepsy have some form of sleep seizures.

    It’s heartbreaking to hear your story, even though many of the people here are in the same boat.

    Hang on and know that we are here for you, whatever the outcome.

    Like

    Comment by Phylis Feiner Johnson — September 27, 2019 @ 7:03 PM

    • I wonder everyday, will we get better? I hope everyone including myself do someday.

      Liked by 1 person

      Comment by jjayp75 — September 27, 2019 @ 7:12 PM

  14. We can get better…sometimes with the right combination or drugs…sometimes with alternative therapies…a vagus nerve stimulator…or a number of therapies.

    Even diet and supplements can help.

    It’s all a crap shoot…trial and error…finding out what’s best for YOU.

    Like

    Comment by Phylis Feiner Johnson — September 27, 2019 @ 7:29 PM

    • Phyllis, thank you so much for speaking with me in my seriously time of need. You’re an inspiration to me that I need im my life.
      Again,
      Thank you

      Liked by 1 person

      Comment by jjayp75 — September 27, 2019 @ 8:04 PM

  15. We’re all here for you. And I think you’ll find this a haven of comfort and care.

    If you need anything, have doubts or problems, just sing out. That’s what we’re here for.

    Like

    Comment by Phylis Feiner Johnson — September 27, 2019 @ 8:08 PM

  16. I read your story and I could identify with so much of it. Thank you for all the article’s. ❤

    Liked by 1 person

    Comment by Bonnie Sutherland — September 29, 2019 @ 9:21 PM

  17. I’m glad if it if helped you.

    Thanks for the compliment. 🙂

    Like

    Comment by Phylis Feiner Johnson — September 29, 2019 @ 9:43 PM

  18. I was ‘lucky’ that my Dad also had epilepsy. He didn’t believe in focussing on the downside and it rubbed off on me. I had a supportive family and friends who didn’t treat me differently.
    I’ve tried about 7 different drugs, in multiple combinations. I started on Dilantin and after 40 years I’m now back on it. It’s the only drug that controls the grand map seizures. The side effects aren’t the greatest but I guess I don’t remember feeling better than I do now.
    I haven’t driven for 30 years but someone is always willing to take me where I need to go.
    I had a long and fulfilling career as an engineer. I always told my employers and colleagues about my condition and found they appreciated knowing about my condition and what what to do if I had a seizure.
    I know I’ve been fortunate with the people I had around me being understanding and supportive but I also think my positive approach to life has helped.

    Liked by 1 person

    Comment by Ian — September 30, 2019 @ 10:02 AM

    • Ian, I think your positive approach is laudable. And probably affected those around you.

      Hooray for you and all those who support you!

      Like

      Comment by Phylis Feiner Johnson — September 30, 2019 @ 11:23 AM

    • My son was on dilantin for several years. OJ t affected his teeth, gums, and bone density. Off for many years. Now there is a law suit by a major firm against the company that manufactured dilantin. If you want the name let me know.

      Liked by 1 person

      Comment by Joel mason — September 30, 2019 @ 11:35 AM

  19. I took Dilantin many years ago. I got galloping gum rot and my beautiful long hair fell out.

    I went toxic and had a 3 day “sleep”.

    But that was many years ago.

    Like

    Comment by Phylis Feiner Johnson — September 30, 2019 @ 11:44 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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    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.

    View Full Profile →

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