Epilepsy Talk

Working, Seizures, and Secrets | August 12, 2021

When I was in my 30’s, I worked real hard and made pots of money.

No sleep.

Many seizures.

But big bucks.

At the advertising agency where I worked, when I saw the couch in my office, I thought: “Well, I guess I’m important.”

Little did I know that I’d end up sleeping on it. And having many seizures.

Then there was the time I was sent to San Francisco to “save” an account.

I saw the pizza boxes and thought: “Great. I love pizza.”

I didn’t know I’d be eating pizza for the next three days. And having seizures.

At the “victory lunch”, I slid from the chair to the floor.

Luckily, they thought I was exhausted. (Which I was.)

The perfect foil for the seizure I was having.

But I had done it. I fooled them again.

Now, thirty-five years later, I still work real hard.

But I don’t make any money.

I write out of love.

And for all those who have to keep epilepsy their “dirty little secret”.

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  1. My true story is a little different I suppose. I was “working” in front of about 125 people and doing one of the things I simply loved – preaching. I was finishing up the sermon when I got lost for (in my mind) about five seconds but found my place and went on quite embarrassed. Well, the five seconds turned out to be about a minute of me just standing there and tapping on the sides of the pulpit, as well as mumbling in some indistinct language.

    I returned to my seat and there was absolute silence. All of this is summed up as my first Complex Partial Seizure. Yes, “Working, Seizures, BUT NO Secrets.” There was no denying what had happened. It was the positive stress of preaching that had brought it on. I continued to have seizures in the pulpit and the end had come to my “job”.

    It took quite a while to even admit that I had epilepsy and get treatment. And it has taken even more time to finally find a way to put that energy into something positive by volunteering at the Epilepsy Foundation. Great topic, Phylis. Thanks!

    Liked by 2 people

    Comment by George Choyce — August 12, 2021 @ 10:14 AM

  2. I think acceptance takes a while, sort of like growing into your own skin.


    Comment by Phylis Feiner Johnson — August 12, 2021 @ 10:32 AM

  3. The REAL dls/ ”dirty little secret” is all the toxins & chemicals in our foods, MAYBE that PIZZA especially if PEPPERONI was on it made those seizures happen then, and still will today. You only know how or if it was or is today by watching the time pattern & the seizure activity pattern when such toxic foods invades all brain chemistry & the BBB, Blood Brain Barrier. Sure I love pizza w/ pepperoni as I am never eating it knowing how a GRAND MAL will happen, yet if I eat a regular slice of pizza with cheese topping & add sugar to the meal in 1 way or another, no seizure activity happens, where GLUTAMATE that is a natural chemicals in ALL tomatoes, does not need to have MSG in any pizza sauces or other toppings that MSG can be in, and NITRATES & NITRITES found in pepperoni I eliminate by not having pepperoni on my pizza. But to prove my point I will have pepperoni with pizza in a few days when my VEEG gets started. Also O R E O cookies I never eat much anymore which I miss, but I do not miss the GRAND MALS or any other seizure activity I will have from them. It will be WINTER or VALENTINES DAY to St Patrick’s Day if I started listing to FINISH every food & drink that I KNOW can cause seizures. The 1st drink was TAB & the 1st food I saw that caused seizures was HOT DOGS & BOLOGNA same thing really.

    Liked by 1 person

    Comment by James D — August 12, 2021 @ 11:31 AM

  4. Well, the pizza didn’t have pepperoni on it (I’m actually allergic to everything except fins and feathers, so that helps a lot) but I’m sure it had MSG in it, which I know, is a real killer.

    MSG: Dangerous or Deadly? https://epilepsytalk.com/2018/03/30/msg-dangerous-or-deadly/

    But TAB? Hot dogs and bologna? What a waste. If you’re gonna be “bad” make it big! 😁


    Comment by Phylis Feiner Johnson — August 12, 2021 @ 12:41 PM

  5. “We are starting up a new company & I would like you to join us in the new company” said my boss, promising me I will have a better position & make a lot of money & stock options in the new company.
    While I was already satisfied, secure & content with the old computer company I’ve already worked for 10 years, the offer & temptations of working for new start up company with great potential for growth & higher salary was too good to skip.
    Therefore, I jumped out from the old luxury boat into a new race cannon, putting in long hours a day to get the new company running to catch up with the market value of the new competitive industry in wireless technology.
    Little did I knew, the high frequency radio products of the wireless technology & the long hours I’m getting exposed to the radio frequency for 20 years is going to end up barbecuing my brain, causing my seizures.
    I refused to believe & accept that I’m having seizures at work, therefore the company requested that I must provide clearance from medical establishments to keep my job.
    Therefore, the last option became staying at Stanford University hospital for a week under MRI tests & video recording to provide medical clearance to save my job.
    “Sir, our brain is like an egg” said the Neurologist at Stanford University hospital & asking me “What happens if you put an egg in the oven”?
    Obviously, the long hours I’ve been exposing myself to the high radio frequency of the wireless products, ended up barbecuing my brain cells causing my seizures.
    Therefore, I ended up losing my job but kept my seizures.
    In the end, I’ve learned a very hard lesson.
    It’s not how much money you make that matters the most.
    It’s how healthy you stay is far more significantly important than the money you make.

    Liked by 1 person

    Comment by Gerrie — August 12, 2021 @ 5:40 PM

    • Losing your job…losing your sanity…losing your life. Not a terrific choice. But through it all dear Gerrie, you have persevered with grace and generosity.


      Comment by Phylis Feiner Johnson — August 12, 2021 @ 7:11 PM

      • Phylis, Thanks to your courageous determination to encounter Epilepsy upfront, many of us have learned from you on how to cope & accept the ordeals of our medical hardships & survive our seizures & made it this far against all odds.
        It’s comforting to know that there are guardian angles like you, who are willing to lead the way & help to see the light across the dark tunnel.
        Keep up the great work. 👍!

        Liked by 1 person

        Comment by Gerrie — August 12, 2021 @ 11:53 PM

    • 1st TIMOTHY 6:10 describes it so clearly, as it is,,, ”for the LOVE” of money is the root of all evil. The entire book of Ecclesiastes says that ALL IS VANITY under the sun. but that everything under the SON is good. Still it makes you wonder when you hear what pastor Dr. Charles Stanley says that whatever makes you come to God and pray, that it is a good thing to have in your life.So God bring in some other things to pray about as seizures & epilepsy for over 60 years is getting pretty old to pray about when they still abuse & torture your brain, heart, faith & life. I’m glad for those few who did not have seizures as the nucleus or center issue where they worked. Those employers must had been afraid to NOT hire or to fire a person when they knew that maybe seizures would be in their vision some day. Most to every employer never wants to see that, so they never hire or keep a person who has seizures.

      Liked by 1 person

      Comment by James D — September 5, 2021 @ 1:44 PM

  6. For years, before I was diagnosed with focal epilepsy, I thought I was having epic panic attacks. I was so ashamed of myself when I had them at school or work, and when I had to go home I’d just lie and say I was having a massive migraine because I felt it had more social “cred” than going home because of a panic attack. Nowadays, I’m more ashamed at how slow and forgetful my medication makes me.

    Liked by 1 person

    Comment by Hetty Eliot — August 12, 2021 @ 10:14 PM

    • Oh Hetty, NEVER be ashamed of who you are. And how you are.

      Every single person on the planet has their frailties — they’re just not so up front about them.


      Comment by Phylis Feiner Johnson — August 12, 2021 @ 11:26 PM

  7. I guess the story for me is the number of times I was pushed down the stairs before I made it to the top floor of my career. I didn’t want to go to college because back in the 70’s, employers were more impressed with experience than education. At 18, I got a job in a bank as an auditor. In their math test, I became the first person to finish the 80-question test in the 10 minutes they give you (I actually finished it in 7 1/2.). I had maybe one seizure when I was there but when I asked for a transfer after a year, my boss said it was his fault nothing was happening so he offered me a month’s pay if I wanted to leave and I did.

    The next stop was another bank and guess what? I became the first person to complete their 90-question math test (Later someone else finished it…my nephew who I taught math to when he was a kid.). I had a few times when I had to call in sick because of seizures.
    Here I got to move about 3-4 times and things looked good until I got promoted, did my first evaluation of another employee and my boss didn’t like it. He said to change it or I’ll get the same review. I let him change it. He gave me the review he warned me about and when I let the highers-up know I was lied to, I was fired.

    That led to an all-time low and and all-ime high. The low was sitting at home for almost a year looking for the next job. Then I saw a chance to be hired by the federal government. I took their test and finished second out of 40 applicants. This would last for 31 years before I decided to retire.

    This last job was full of adventures. As I tried to advance, I felt a lot of pressure and a lot of depression which we all know leads to seizures. Some of the people were amazed how I handled it while others looked at me as a big problem. Between setbacks and changes made to the rules (Remember, this is government. They make their own rules.), I was stuck at the same level for many years.

    Then a couple of breaks went my way. We got a new boss and he felt I had what he wanted – not a degree but the knowledge to solve a lot of problems quickly. Halfway thorugh my career with Uncle Sam, I made a big decision – to have my brain surgery. When I first came back, my branch chief felt I was a problem – that I forgot a lot of things when I shouln’t have. But within a year, she started telling me not to be so hard on myself. I’m doing fine. Go figure!

    I needed 30 years to claim a full pension. A lot of people were using thousands of hours of saved sick leave to pad their time but with all of my adventures of epilepsy, I had only 200. I spoke with my wife about it. She wanted me to work two more years so we compromised and I worked one. My last two years I saw something on my evaluation I never saw before. I was rated Outstanding. This boss tried to keep me but I told her they were making too many changes in too little time and with my memory problems, I couldn’t feel comfortable staying and I left in March of 2017.

    So overall, I got what I wanted at work. It just took a while to get here.

    Liked by 1 person

    Comment by Ed Lugge — August 13, 2021 @ 5:54 PM

  8. Wow. What a champ. I salute you for your perseverance, self-advocacy, and positive attitude.

    You are someone I admire and I’m honored to be your friend.


    Comment by Phylis Feiner Johnson — August 14, 2021 @ 9:46 AM

  9. I have trouble sleeping at night time, when I go to bed at 9:00 O’clock p.m. . For or some reason I tried to go to sleep with my music on real low, and other times I also tried sleeping with out my music to. And it doesn’t seem to work at all… I am now going to some sleep asomia , for THERAPY for this. I want to make sure that Iget enough sleep, so that I don’t have a SEIZURE if you understand what I mean ? Nadine Basten

    Liked by 1 person

    Comment by Nadine Basten — August 14, 2021 @ 10:35 AM

  10. Nadine, have you considered Melatonin? It’s an herb (that even comes in gummies!) I take 10 MG a night, before bedtime and sleep like a dream.

    Melatonin for Sleep: Does It Work? https://www.hopkinsmedicine.org/health/wellness-and-prevention/melatonin-for-sleep-does-it-work


    Comment by Phylis Feiner Johnson — August 14, 2021 @ 11:01 AM

  11. Lucky are those who are able to maintain employment with E, even if in secret. Whether related to stress, toxins or other things, those who have had seizures at work should not be forced to have their lives come to a halt due to the stigma, lack of insurance and drug side effects related to E. The world is certainly losing some good people, isn’t it?

    Liked by 2 people

    Comment by skolly9 — August 14, 2021 @ 4:53 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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