Epilepsy Talk

Confessions of 30 years with epilepsy… | October 27, 2017

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 37 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 25 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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35 Comments »

  1. Wow,

    Like

    Comment by Marie — October 27, 2017 @ 12:31 PM

  2. I live in South Carolina. I was diagnosed with epilepsy at age 3 (I’m 64 now).
    How do you become a epilepsy advocate? The epilepsy foundation doesn’t have a office in my state if that makes any difference.

    Like

    Comment by Mark Thompson — October 27, 2017 @ 12:39 PM

    • You can things like speak to local organizations…hold fund-raising drives in different public places (with their support)…get together a pizza night where the vendor allows $X.XX off on pizza, with the remainder funds going to the Epilepsy Foundation of America…start a support group…

      Like

      Comment by Phylis Feiner Johnson — October 27, 2017 @ 1:27 PM

  3. Thank you so very very much – it helps so much to hear exactly how it is for someone else. I’ve been having a really rough time for the last few months – causing me to be possibly visibly absent from the site here – and this is making me feel more able to sit up and think again about how to deal with life.

    Like

    Comment by Margaret — October 27, 2017 @ 1:05 PM

  4. I was lucky!?! I got this when I was 19, now 46 years later I have been seizure free for 1 year…at last. My godsend? The dred Keppra.

    Like

    Comment by Marie James — October 27, 2017 @ 1:13 PM

  5. wonderful information for not just epileptics- hopefully everyone will read your post. The public needs the
    education. Thank you!

    Like

    Comment by Karen — October 27, 2017 @ 5:35 PM

    • Well, it’s just one person’s story. But if it can educate and illuminate the problems at hand, then I’m happy.

      Like

      Comment by Phylis Feiner Johnson — October 27, 2017 @ 5:48 PM

  6. I have really never met a person who has seizures, to be exalted & not humble. It is the humble part of having seizures that makes yo aware of what life is to be about, even as the rest of the self-centered world & some family members have their tunnel vision, only to see what they care about & not think things be worse for them. So that alone always keeps me from exalting myself, even as I know seizures never was a reason to do many things at free will, knowing those results could make seizures worse, so those other ways a free will / choices of life I stayed away from for over 50 years. Still as i was taught by my grandmother who told all her grandchildren to never start something, that later you may or will have a hard time to stop. So the drugs, & everything else I said NO to, because I was taking 600mgs of drugs as it was & I hated that. I am always looking for my special keeper as I know they want the life with out all BAGGAGE they claim they can not deal with or want added, but when some of can never STOP seizures in out life, you get THE TOTAL PACKAGE & sometimes that comes with seizures or whatever. Those who can not deal with that, THEY are the losers, as we who only have HOPE here on earth, knows all of life here is just temporary. Today I only take 100mgs of AED, and still I can have a GRAND MAL seizures, & when the 600 + mgs of AED’s were taken years ago, I had hundreds of petit mals seizures. Neither situation is ever a winning one, as you have to prove 10X’s more you are worthy of something to others, but it’s not OTHERS I live for, as God & Jesus Christ is who & what I am here to do their work for. That is they ONLY WAY to think & live when seizures are always a threat to your life 365 days a year.

    Like

    Comment by C D — October 27, 2017 @ 7:09 PM

  7. Well Phylis, you became an epilepsy advocate and we became the winners in this little saga. I think I can speak for a whole bunch of us out here in saying that we really do appreciate you, your comments, and all the information you have to offer us. I have had my eyes opened more than once by info within your columns. I became refractive and none of the drugs were doing a thing for my seizures so I ended up having the surgery and the RNS implant in January, so it has been 10 months, seizure free and I hardly know how to act. They didn’t find those termites I thought were up there and I guess they knew what they were doing up there in my attic.They did take a big chunk out of my right lobe so that will leave me a left brained screamin liberal activist. So I betcha they had to put a chip in there too just to keep an eye on me and keep me in line. Once again Phylis, thanks, and keep those columns coming. EdBrad

    Like

    Comment by edbrad — October 27, 2017 @ 9:36 PM

    • Ed, you’re the best. No bats in the belfry…but the happy future of becoming a drone.

      I’m glad you are my friend. 🙂

      Like

      Comment by Phylis Feiner Johnson — October 28, 2017 @ 9:36 AM

  8. Thanks so much for your post. I had my first fit at 13 and same as you became a pariah during my teens, instantly became the black sheep of the family and was avoided in much the same way at university and in my 20s. Like you I had to lie about having fits because i soon learned that mentioning epilepsy was the equivalent an a red A being burnt onto your face. I just about manged though had to have many excuses and near misses when I was nearly discovered. I was teaching English at a university in China when feeling a fit come on I excused myself and found a small room where they stored the cleaning materials and mops and stuff and went out there and then waking 5/10 minutes later by an elderly lady who did the cleaning. That was an interesting “conversation” and I had to go back and give a reading class straight afterwards. I was found out when I had a fit in the teachers common room and that was it – straight back home the next day, Thank for this site and please let me know if i can help in anyway

    Like

    Comment by Nick — October 28, 2017 @ 5:16 AM

    • Oh, the things we do to “hide” who we are. 😦

      I can just see the cleaning lady’s face when she discovered you.

      Like

      Comment by Phylis Feiner Johnson — October 28, 2017 @ 9:16 AM

      • Believe me there was not much talking! I only knew a few words of Chinese and the cleaning lady had absolutely no English . I was still pretty groggy, sleepy and not in much of a mind to explain myself. I do remember pointing to a load of brushes taking one smiling and then running off back to my class. I later told my class I needed the brush for my flat and later they explained it all to the cleaner who was pretty cool about missing brush. But was a close”brush” with the university I have to say I enjoyed teaching in China very much. The epilepsy was always a bit of problem though. Sympathise with your experiences too beginning sounds very similar.

        Like

        Comment by Nick — October 31, 2017 @ 3:56 AM

      • Well, that must have been quite the conversation, as you said. All this while hiding a seizure?

        Like

        Comment by Phylis Feiner Johnson — October 31, 2017 @ 9:28 AM

      • Yes the fit had ended and usuallyl i sleep it off afyer the physical part but the cleaner coming into the small room woke me and I managed to cover up how tired I really was before leaving with the brush and then heading back for the reading class. Fortunately classes are only 1 hour long so I gave the students a read and then precis exercise from the coursebook and doozed it it off in the back of the class. Happy days!

        Like

        Comment by Nick — October 31, 2017 @ 10:47 AM

      • Well, you’d make a good undercover agent! 🙂

        Like

        Comment by Phylis Feiner Johnson — October 31, 2017 @ 11:22 AM

  9. I was born with epilepsy and i just got it under control after 50 years.

    >

    Like

    Comment by candleman26@yahoo.com — October 30, 2017 @ 6:58 PM

  10. Sure appreciate your ‘talk’ and have shared it with my son and friend you e been a great help to All of us Thank you

    Like

    Comment by sassyphire3 — October 30, 2017 @ 8:29 PM

    • I’m glad if I have helped. If there’s anything you need, key it into the search bar and sing out! 🙂

      Like

      Comment by Phylis Feiner Johnson — October 31, 2017 @ 9:24 AM

  11. To have been through what you did then reach out to others with epilepsy,makes you a very special lady,I’m in the uk,you got me thinking of doing something similar here.Education is a good thing.

    I hid mine for many years.

    I had seizures from a young age but my diagnosis did’nt come until I was 37.

    I even went to my school library to look for my symptoms that was when I realised what was wrong with me,I was fourteen at the time all I felt was shame so I never mentioned anything to my mother.

    I was just the strange one,I had at the time absence seizures so they were easy to cover up,my mother thought I was a daydreamer.

    The strange part came from the fact I used to rock back and forth when I had them.

    I had my first grand mall after my son was born it was put down to hormones at that time.

    I had many more GM before I got a diagnonsis of temporal lobe epilesy at 37.

    Like

    Comment by Berenice John — October 31, 2017 @ 10:39 AM

    • Yes, education is a good thing. Knowledge is power. Perhaps you would have been spared your ordeal if someone knew and acknowledged what was going on.

      Like

      Comment by Phylis Feiner Johnson — October 31, 2017 @ 10:43 AM

  12. Bonjour j’habite en France j’étais épileptique pendant 25 ans et c’est superbe ce qu’a écrit confessions de 30ans je le comprends parfaitement c’est superbe Moi aussi j’ai un projet qui se fera aux usa et non plus en France trop difficile bonne continuation Herve

    Like

    Comment by Cauet — November 3, 2017 @ 4:22 PM

  13. Hi confessions of 30year 😉 my name is Herve lm From France near castle Versailles and l was epileptic 25 years l ask french hospitals publics With a projet but isnt possible so now l turn américain hospitals because l thinks that more easy my name is Herve and you ?

    Like

    Comment by Cauet — November 3, 2017 @ 4:47 PM

  14. This link should help you find patient recommended neurologists in the U.S.

    2017 Patient Recommendations for TOP Neurologists…Epileptologists… Neurosurgeons…and Pediatric Doctors

    https://epilepsytalk.com/2017/01/14/2017-patient-recommendations-for-top-neurologistsepileptologists-neurosurgeonsand-pediatric-doctors/

    If that’s not what you’re looking for, let me know.

    Phylis Feiner Johnson

    Like

    Comment by Phylis Feiner Johnson — November 3, 2017 @ 4:58 PM

  15. I Was Lucky to be successfully operated in january 2004 At the salpetriere Paris largest hospital in Europe but now l would like help for the search epileptic chidren américain because when l had 9years ago l was epileptic and my parents were désemparés Hospitals french did not have the scanner yet except for one hospital américain close to Paris So now its my turn to help américain chidren Today l have 48 years ago

    Like

    Comment by Cauet — November 3, 2017 @ 5:10 PM

    • I do not really know how to check for children who have epilepsy, except to contact the Epilepsy Foundation of America. Their email address is https://www.epilepsy.com/ and I know they do have summer camps for children as well as other programs.

      Like

      Comment by Phylis Feiner Johnson — November 3, 2017 @ 5:49 PM

  16. I visited many time usa when l was epileptic and l know the hospitals of Boston is the Best for the epileptic chidren but for me the first idea its write a book Here in France l have a friend editor living the Island of corsica May be isnt possible

    Like

    Comment by Cauet — November 3, 2017 @ 5:59 PM

  17. It may be a difficult task, but with thorough research, perhaps you can achieve your goal.

    Like

    Comment by Phylis Feiner Johnson — November 3, 2017 @ 7:07 PM

  18. Phylis, you give new meaning to the word “indomitable”. I have learned much from Epilepsy Talk. I appreciate your “footnotes”–documentation is so important!

    Like

    Comment by Chris Keller — November 10, 2017 @ 7:34 AM

    • I’m so glad.

      I learned after 10 years of writing about health and wellness that it was all about research.

      If a claim was false, the FDA would be knocking at the door.

      And clients would have no problem letting you take the hit.

      So it’s all things research, all the time.

      (Although sometimes the link is “broken” which is frustrating.)

      Like

      Comment by Phylis Feiner Johnson — November 10, 2017 @ 7:59 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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