Epilepsy Talk

Who is Your Personal Hero? | February 7, 2019

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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30 Comments »

  1. My parents and siblings, my husband and children, my friends and strangers never treated me as less than everyone else. I was lucky that my parents taught me that I was equal. I never treated differently but safely. When I decided that I wanted to be a mental health therspist, teachers saw that I had an eye to use what I learned appropriately and encouraged me to stay within bounds. Unfortunately, my mistreatment came from a mental health therspist who was my therapist but that wasn’t until late in my career and I already knew I was priceless and she was ignorant!

    Liked by 1 person

    Comment by Janet deardorff — February 7, 2019 @ 12:22 PM

    • Sometimes therapists can be a factor in unraveling the positive and dwelling on the negative.

      Mine is totally wonderful, and I know I’m very lucky.

      But happily you have the love, acceptance and strength to be who you really are.

      Congratulations…for seeing the ignorance and not capitulating to it.

      Like

      Comment by Phylis Feiner Johnson — February 7, 2019 @ 12:37 PM

  2. Goodmorning Phylis 😊. I was raised by all of my maternal great grandparents, great aunties and uncles as well and my maternal aunties, uncles and mother by my “Maternal” Gandma ❤️🙏🏼🦅😇💕. I COMPLETELY UNDERSTAND AND AGREE!!!!! I was born with epilepsy and I am now 48.5 years old. It is the LONLIEST AND HARDEST FEELING TO REALIZE I no longer have ANY OF MY OLD PEOPLE (in body) with me everyday. However I NOW HAVE MY HUSBAND AND CHILDREN! ❤️. I was directly raised by my “Maternal Grandmother”. I realized once I NO LONGER HAD ANY OF MY OLDBPEOPLE all I really have now as “steadfast” husband, children and the family and friends (very few), but there’s never a day that goes by that I DON’T THINK AND IMAGINE all of those who REALLY LOVED, CARED AND BELIVED IN ME!! Thank you so much for writing this piece because it’s TRUELY THOSE PEOPLE WHO MAKE THE FIGHT WORTH IT!!!!!!! Please have a very good day today and take care 🙏🏼🦅😇💕😘

    Liked by 1 person

    Comment by Kathy S.B — February 7, 2019 @ 12:23 PM

  3. Thank you for this feed. My personal hero is my daughter, who in her freshman year of high school came down with mono, and started having seizures. No reason, no family history, no quick fix. While we are still struggling to find the right medication, and she struggles with school work, her sunny personality is an inspiration to me.

    Liked by 1 person

    Comment by cindy disco — February 7, 2019 @ 12:23 PM

  4. There are very few people who I can say are a HERO to me in my life, besides my grandmother & mother. Both had & has proven to me what unconditional love of God is about. I lost my grandmother at age 19, and after 58 years I am so blessed to have my mother still. Both never knew the meaning of the word rejection toward anyone who they connected with, and better never try to harm any of their children in any way at all. They both demanded ”respect” which is something this world has lost over the past 30 years when the ”me only selfie world” started in the late 1980’s. So yeah,, we are all odd with our seizure condition in some way or another, yet when you have a mother & grandmother, who will always say to you how special you are in the eyes of God, Why would anyone else come to mind as a hero ? One thing I do know 100% sure that God never leaves you, but people will or has left God or they do not care to know him & never will. So my grandmother & mother are both my heroes. There may be a few in this world who may act like they care as long as they will benefit from you in 1 way or another, but when they figure that you are not needed or important to them, they get dementia real quick in even remembering WHO you are, as they remember quickly WHAT you are, as they get both of them wrong every time.

    Liked by 1 person

    Comment by James Davis — February 7, 2019 @ 1:34 PM

    • But you will always love your mother and grandmother — as they loved you.

      Unconditionally.

      With love like that, I guess other loves pale in comparison.

      Except for God, of course.

      You are a fortunate man.

      Like

      Comment by Phylis Feiner Johnson — February 7, 2019 @ 1:43 PM

  5. All that I said above Phylis does NOT mean that you are part of that evil world. You are special & are A HERO for all you do in trying to help me or anyone living with seizures, & the troubles we all have with that life. If it means anything to anyone, the BIBLE says that after this life, & death happens, we are to have that eternal life & we are to be transformed as an angel in Heaven for those who believes in Jesus Christ. So I say let’s all get there for that ASAP. Only 1 way to get there. Don’t have to be perfect either.

    Liked by 1 person

    Comment by James Davis — February 7, 2019 @ 1:41 PM

  6. MY HUSBAND.HE’S ALWAYS GOT MY BACK.I’VE HAD EPILEPSY FOR 10 YEARS AND WE HAVE BEEN MARRIED FOR 20 YEARS.HE ALWAYS TAKES CARE OF ME.HE’S THE BEAUTIFUL FACE I SEE WHEN I COME OUT OF MY SEIZURES.HE UNDERSTANDING ABOUT ME NOT BEING ABLE TO WORK OR DR8VE.AND ABOUT MY MEMORY LOSS.WHEN OTHER PEOPLE LAUGH AND MAKE FUN OF ME WHEN I CAN’T REMEMBER DRIVE RECOVERY WORK,HE HIS MY INSPIRATION BECAUSE HE LOVES AND TAKES CARE OF ME.I KNOW YOU MARRY TO BE THERE FOR SICKNESS AND HEALTH.BUT I KNOW ALOT OF WOMEN ARE NOT THAT FORTUNE.I KNOW ALOT OF WOMAN WITH DISABILITIES AND THEIR HUSBANDS TOOK OFF AND NEVEREDELICIOUS.I LOOKED BACK

    Liked by 1 person

    Comment by Angela carter — February 7, 2019 @ 2:00 PM

  7. Oh Angela. You are so fortunate.

    And so am I.

    I had a flaming seizure on my first date with Arthur and we’ve been married for almost 39 years — through a lot of “thick” and a lot of “thin”!

    Like

    Comment by Phylis Feiner Johnson — February 7, 2019 @ 2:18 PM

  8. Phyllis, you are a hero to many people in the epilepsy community. Keep on doing what you are doing. Kudos from Toronto to you (your husband and late Grandfather too)!

    Liked by 1 person

    Comment by Nancy — February 7, 2019 @ 2:51 PM

  9. Oh thank you so very much, Nancy.

    That means a lot to me.

    Like

    Comment by Phylis Feiner Johnson — February 7, 2019 @ 3:06 PM

  10. My husband is my support person. We been married 40 yrs. My seizures started 10 yrs ago which we think caused by mercury toxicity, EBV , multiple allergies and mild head trauma. My story is long but I now enjoy early retirement and feel wonderful. I thank God daily for a wonderful supportive husband.

    Liked by 1 person

    Comment by Deborah Harley — February 7, 2019 @ 3:30 PM

  11. No one and nothing could be better.

    I know from personal experience.

    And we are lucky women, indeed. 🙂

    Like

    Comment by Phylis Feiner Johnson — February 7, 2019 @ 3:35 PM

  12. Phylis,

    I’ve never had a ‘personal’ hero. I have been inspired by a few: Graca Machel (and her late husband Nelson Mandela), Steve Biko, Desmond Tutu, Vaclav Havel, Marie Curie, Ada Diaconescu…

    I read your story; you’ve been added to the list.

    Liked by 1 person

    Comment by Stephen Smith — February 7, 2019 @ 4:22 PM

  13. A hero is good. A “personal” hero is even better!

    And if I inspire you, more the better.

    Thanks for that complement.

    Like

    Comment by Phylis Feiner Johnson — February 7, 2019 @ 5:09 PM

  14. Thank you for your experience!

    Liked by 1 person

    Comment by john lyden — February 7, 2019 @ 6:22 PM

  15. My inspiring heroes has always been my loving father & mother, who raised 8 sons & daughters under the same roof, instilling strong moral & family values & powerful self-confidence in all of their sons & daughters.
    Growing up in a very competitive environment, you’re as good as your other sibilings, to my father & mother.
    While my dear father passed away 10 years ago, his inspiring compassionate love still keeps gravitating the whole family around my mother, refreshing the memories of 60 years of matrimomy.
    And this compassionate family love has been surrounding my hospital bed every time I got a seizure & ended up in hospital emergency room bed.
    Thanks to the heroic father & mother, who built a good family to stand together in good & bad times, I made it this far surviving 20 years of seizires.

    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — February 7, 2019 @ 10:22 PM

    • Oh Gerrie, to have such a stalwart family of caring is such a blessing, as you already know.

      And those values are clear in everything you are and do…loyal and true.

      Like

      Comment by Phylis Feiner Johnson — February 8, 2019 @ 8:05 AM

  16. My personal hero has four feet and a fur coat. He is my steadfast seizure alert dog who has been with me now for 12 years. We found each other one summer in Baja California where a veterinarian friend of mine was running a rescue shelter for stray/feral pets. This poor little guy was scrounging out of dumpsters and begging for scraps to survive (and he was only barely surviving. Mange, fleas, tics, and seriously skinny). I adopted him just because he was cute and I wanted a dog. I had no idea that he had the talent to predict oncoming seizures. The next time I had one, he basically volunteered his services.
    People ask me why I never got married and I tell them, “If I had ever met a guy as nice as my dog, I would have married him in a heartbeat.”

    Liked by 1 person

    Comment by paleobird — February 7, 2019 @ 10:30 PM

  17. I suppose our “fur family” are called that for a good reason.

    He’s rescued you, just as you rescued him, so long ago.

    The love and devotion are palpable.

    And yes, it would take a very special guy to be as loyal and true.

    Like

    Comment by Phylis Feiner Johnson — February 8, 2019 @ 8:15 AM

  18. My dad,he has always been my number one! He is a wonderful man,honest and by far the hardest working man I’ve ever known! He is my hero!!! ❤

    Liked by 1 person

    Comment by Jeanette — February 9, 2019 @ 12:41 PM

    • He must be a super guy!

      Unfortunately, my dad was NOT like that.

      (At least in the honesty department.)

      It took me years after his death to forgive him.

      Until I finally realized he was emotionally “disabled”. 😦

      Like

      Comment by Phylis Feiner Johnson — February 9, 2019 @ 4:02 PM

  19. My favorite heroes are those who understand the
    Difficulties of this disorder.

    Liked by 1 person

    Comment by Zubair — February 9, 2019 @ 11:28 PM

  20. Life change social media comments next positive comments we learned a lot
    Last 2 years active social media comments constantly monitoring and changing ourselves.
    First credit goes to Parents their support during difficult times whether childhood life then after my education assistance .we should not forget.
    2004 Dr. Zakir Nail comments about Islam really changed my life so many channels check I went to watch Qtv at that time this channel comments totally changed my life and our life after watching the channel we used to interact about Islam and other religions books discuss so many hard facts were known.

    Liked by 1 person

    Comment by Yusuf — February 11, 2019 @ 10:08 AM

  21. I’m glad your parents were so supportive.

    And that you found Dr. Zakir Nail.

    But finding Qtv sounds like it was the real force behind changing your life.

    And it seems like it made a positive influence like no other.

    Like

    Comment by Phylis Feiner Johnson — February 11, 2019 @ 10:24 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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