Epilepsy Talk

Who is Your Personal Hero? | February 7, 2010

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 by funding my venture.  I quit my day-job as a promotional freelance writer and joined his company as VP of Community Outreach.  And that’s what I’ve been doing ever since.


  1. For me, it was my grandfather on my mother’s side of the family. It made my mother furious. He told me every year that I visited him that he had set up a separate trust fund for me, my sister and my brother. He knew how the family felt about me. He wanted to make sure I knew about it. It did go over to my brother, my 1/3 of the trust fund. I did not get any inheritance. The fact that he loved me and cared for me made a great difference in my life.

    My husband and my son are my second ones. They are my caregivers. They love and care for me very much.


    Comment by Ruth Brown — February 8, 2010 @ 2:24 AM

  2. Hi Phylis, do you have any other personal heroes?


    Comment by Ruth Brown — February 8, 2010 @ 2:49 AM

  3. I forgot to mention my father. He kept me in the family. He was great!!

    First my grandfather died, I told my fiance (now my husband since 1963) that when my father died I would be disowned from the family.

    He told me that it would not happen. Sure enough, when my father died, I was disowned. I was not even allowed to go to his funeral. After all, what if I had a seizure there. That would embarrass the family.


    Comment by Ruth Brown — February 8, 2010 @ 10:50 AM

  4. It’s interesting. On most of the forums where I posted the question, the peoples’ response was their grandfather.


    Comment by Phylis Feiner Johnson — February 8, 2010 @ 11:09 PM

  5. Maybe it is because our grandparents spoiled us.


    Comment by Ruth Brown — February 8, 2010 @ 11:39 PM

  6. Hi Phylis,
    yourweb site is a gift to a mom like me! 🙂 Thank you for giving a forum for anxious momsto find some informatin. My son is 21 year’s old and has epilepsy. He was seizure free for almost three years until this morning! He is a young man with cerbral palsy too so I was counting my blessings that at lest the seizures were through. but alas… I would love your experience of how long people have gone without one. OUr neurologist although a good man offers no insights … Ido not want to change his medicine, he is on Trileptal and he handles it well. He is on the max dosage though and I will live with one seizure every three yars if need be. thanks for letting me ramble here and I appreciate any info you have on how long people have gone without seizures.
    Have a great day and again thank you for creating this web site.


    Comment by Debbie gilson — February 10, 2010 @ 8:49 PM

    • Although this does not specifically answer your question, here’s what I found research from http://my.epilepsy.com/node/654

      About 25% to 35% of all children with cerebral palsy have epilepsy. A much smaller proportion of those with epilepsy have cerebral palsy. Epilepsy and cerebral palsy are separate disorders, but both can result from the same abnormality of the brain. Epilepsy does not cause cerebral palsy. Cerebral palsy does not cause epilepsy. The two conditions simply coexist, and are differing signs of a brain abnormality or malfunction.

      Then http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Cerebral+Palsy+and+Epilepsym goes on to say:

      In patients with cerebral palsy and seizures, disruptions of electrical charges in the brain can cause tonic-clonic seizures – where bursts of electricity spread throughout the brain and cause symptoms all over the body – or partial seizures – where disruption is confined to one part of the brain and symptoms are more specific.

      Many studies have been conducted regarding the prevalence of epilepsy in patients with cerebral palsy. It was found that in children with CP, 10-32% developed epilepsy. The risk for epilepsy in these children with neurological handicaps remains elevated at least through the second decade of life.

      So your 21-year-old son may be one of the lucky ones who is outgrowing his epilepsy. Let’s hope and pray that is the case!


      Comment by Phylis Feiner Johnson — February 11, 2010 @ 3:02 AM

  7. Hi Debbie, I am very sorry that you and your son has had to go through this. My sister outgrew her epilepsy in her teenage years. She lived a normal life.

    You are a great mom!! You are your son’s hereo.

    Keep us posted. I did not know those statistics before. Phylis does great research for us.



    Comment by Ruth Brown — February 11, 2010 @ 6:22 AM

  8. My personal hero is my son. He saved my life. I had 3 seizures in the car but the family didn’t know it was happening/saw (my husband was busy driving & my 2 kids were in the back seat).When we got home & I didn’t get out, my son opened the door, saw me unconscous & gave me CPR. My daughter is a hero too. She ran & called 911. My husband is ‘my hero’ cuz’ he stayed with me most of the month when I was in the hosp. Then came each day I was in rehab. (2 months).


    Comment by Lorraine Konesni — April 14, 2013 @ 5:22 PM

  9. Wow Lorraine. What a family! How blessed (and proud) you must be.

    Thank you for sharing. It’s inspiring stories like yours that get us through.


    Comment by Phylis Feiner Johnson — April 14, 2013 @ 9:00 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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