Epilepsy Talk

Who is Your Personal Hero? | December 19, 2017

For me, it was my Grandfather, who believed in me completely and thought that I could do anything I set out to do.

At the age of 14, I said I wanted to be a writer.

“Fine, he said. You’ll go to the Columbia School of Journalism.” (Unfortunately he died long before that and nobody else had any faith in me. They all thought I was “damaged goods.”)

My husband is my second hero for being so steadfast and true.

He is supportive through thick and thin. (Even my attempted suicide.)

And he actually made it possible for me to become an epilepsy advocate.

I quit my “day job” as a promotional freelance writer and joined his company as VP of Community Outreach.

And that’s how Epilepsy Talk was born.

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16 Comments »

  1. My hero was my dad.
    If I said I wanted to do something,he believed in me all the way and would back me and cheer when it was completed.
    He passed a couple years ago but always in my heart.

    Like

    Comment by Bonnie — December 19, 2017 @ 5:04 PM

  2. As long as he’s in your heart, his spirit lives forever.

    (At least, that’s what I believe.)

    Like

    Comment by Phylis Feiner Johnson — December 19, 2017 @ 5:08 PM

  3. Attempted suicide? oh honey. I hate that. I was blessed with care and support though the problem was not diagnosed till years later. My parents always had my back. Since it reoccurred when I turned 60, my luck maintained. The kindness of friends, co-workers (also friends), and family. Heroes to me on the epilepsy trail are those people, friends and family, that helped me get back on my feet

    Like

    Comment by Kate Jacques — December 19, 2017 @ 7:03 PM

    • I’m so glad you had that kind of support, loving and caring behind you.

      My suicide attempt was caused by a number of various factors, but I did go into status and was put into an induced coma, after I had two heart attacks. 😦

      Like

      Comment by Phylis Feiner Johnson — December 19, 2017 @ 8:14 PM

  4. My hero is my husband James Stewart of 37 yrs. I fell in love with a writer. Back in the 80’s. He was former editorial writer of wkly newspaper. Anyway, when I had my my first seizure was when I went in pre – mature labor. He was RIGHT there for me! Luckily, his mom my mother in law was a nurse was a nurse. Luckily, she got me to see neurologist. As, yrs gone by I, always had seizures in my sleep. He has always been my watch tower & rescue! He will always be my hero!

    Like

    Comment by Joy Stewart — December 19, 2017 @ 9:08 PM

    • Interesting. I’m a writer who fell in love with another writer and we’ve been married for 37 years!

      And I had a flaming seizure on our first date.

      Like your husband, he’s always been there for me, through thick and thin.

      A true hero.

      Like

      Comment by Phylis Feiner Johnson — December 20, 2017 @ 8:51 AM

  5. Snoopy, he’s wiser than all those dried up Greek philosphers and always has a good joke to cheer you up!!!

    Like

    Comment by Gail — December 20, 2017 @ 2:35 AM

  6. My hero was my father, a Police Officer who survived being shot, wounded & six months coma, to raise nine children & retired after 40 years of community services.
    The courage of the dear man to overcome formidable odds & still manage to carry on his obligations & responsibilities with the same willpower & caliber to the last breath of his life, has always been an inspiring engine to drive me through difficult times.
    And ever since I came up with Epileptic seizures out of no where in the midst of ordinary lifestyle, the inspiring courage of my father has been the driving force I inherited to relay on, lifiting my head like a pillow, even after my dearest father passed away two decades ago.

    Next to my father, my oldest sister is my Heroines, standing by my hospital bed, dropping everything & anything she were doing & dragging her husband & her children to the hospital, EVERY TIME & when ever I’m struck by another grand seiziures & ended up in hospital ER/Intensive care unit.
    And Phillis is my other HEROINES, whom I have come to appreciate during my difficult ttims of learning how to cope & servive with Epilepsy & medical ordeals, openly talking, discussing & sharing for many of us, encountering seizures for the first time or already living with epilepsy.
    Thanks to Phyllis, some of us has survived this long by learning from this Website, the mystery of Epilepsy from this website more than from the Neurologists, Doctors & Hospitals we have been shipped too, searching for mercy.

    Like

    Comment by BahreNegash Eritrea — December 20, 2017 @ 5:38 PM

    • Gerrie, I have tears in my eyes — that you would compare me with the marvelous, loving, compassionate, brave, strong, people who helped make you as wonderful as you are.

      Thank you from the bottom of my heart.

      Like

      Comment by Phylis Feiner Johnson — December 20, 2017 @ 7:47 PM

      • Phyllis,
        I’m honored to have come to know you & your energetic drive to speak for the voiceless masses all over the world, silenced by Epilepsy.
        Those of us who had no idea of “What’s epilepsy & How to live with epilepsy”, have managed to survive this long, benefiting from your experience & tireless hardwork, providing desperately needed information & support system.
        You’ve earned your place in the hearts & minds of many patients, learning how to cope & live with Epilepsy, following your courageous experience & resourcesful information.
        It’s a privilege to honor & credit the heroes & heroineses of our lives, who made our lives a whole lot better by leading us on how to overcome adversity.
        Therefore you’re very welcome but you earned & deserve the honor.
        Wishing you very HAPPY HOLIDAYS!
        Gerrie

        Like

        Comment by BahreNegash Eritrea — December 21, 2017 @ 1:10 AM

      • This is the reason I get up in the morning.

        Blessings to you all.

        Like

        Comment by Phylis Feiner Johnson — December 21, 2017 @ 9:25 AM

  7. childhood was difficult. Many relatives and friends did not accept me for who I was- most of them were not educated about epilepsy, and it was like being left out
    on many occasions. School activities (choosing team members) always left me to the last.

    Only in later years genealogy revealed that my grandfather had Epilepsy, and it had been kept secret all the years. Had my parents and doctor known about it when I was little, treatment could have started earlier, and perhaps helped my condition.

    Like

    Comment by Karen — December 21, 2017 @ 2:06 PM

    • Like that song by Janis Ian, “Always last to be picked for basketball.” I know the feeling all too well.

      And it’s too bad they didn’t have genetic testing back then, it would have saved you a lot of pain and anguish.

      But, as you you know, in your grandfather’s time it would have been a BIG taboo and he might have been assigned to some institution — which would have been even more horrible. 😦

      Like

      Comment by Phylis Feiner Johnson — December 21, 2017 @ 2:42 PM

  8. For me, it was my brother. We have pancreatitis in our family and even though they used to say it’s not hereditary, 14 cases in my family says otherwise. My brother was a guinea pig. He was the first person ever to have his pancreas removed even though his chances of surviving the surgery was 50-50. That was 45 years ago and he’s still here.

    When I had an almost fatal accident, I decided to have a temporal lobectomy and after what my brother did, I had no reason to think of my chances of survival…besides, the surgeon told me I had a better chance of dying in a car accident and that already happened. After 17+ years of seizure-control, I’m glad I did it and hope anyone else who does it has the same result.

    Like

    Comment by Ed — February 6, 2018 @ 4:58 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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