Epilepsy Talk
Who is Your Personal Hero? | March 24, 2026
For me, it was my Grandfather, who believed in me completely and thought that I could accomplish 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.
That’s how Epilepsy Talk was born.
And of course, ALL of you are my personal heroes. Compassionate and caring. Generous and giving.
Without you, I don’t know what I’d do.
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We are thankful for those who had faith in you. You are an important source. HOORAY PHYLIS!
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Comment by Flower Roberts — March 24, 2026 @ 11:09 AM
Hooray for all of you. You are the reason I get up every morning.
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Comment by Phylis Feiner Johnson — March 24, 2026 @ 11:25 AM
My son Lance for sure. My brave boy was diagnosed with epilepsy at a young age. He turns 25 in June!
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Comment by Chester Kuhn — March 24, 2026 @ 12:36 PM
All heros and warriors welcome!
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Comment by Phylis Feiner Johnson — March 24, 2026 @ 3:20 PM
I am my own hero. I am 47 years old and have had epilepsy for 31 years. I have a VP shunt in my brain for 26 years now. I was told at the age of 19 that my life is over and must stay in a home. I refused to let my disability define me. I have a beautiful healthy daughter that is getting married and having a baby girl. I got retrenched 7 times was almost homeless. I do Bookkeeping for complexes for 5 years now and am living by myself. You can do anything you set your mind to. Life is a blessing.
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Comment by Susan Whittaker — March 25, 2026 @ 5:56 AM
And you are blessed with bravery and courage. A true hero.
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Comment by Phylis Feiner Johnson — March 25, 2026 @ 11:13 AM
Id have to say the epileptologist I have had for the past 30 years. He has made such a difference in my life. It might sound crazy, but I was having seizures monthly. Up to 12-16 seizures a month. Until I met him and he suggested run tests to see if Id be a candidate for surgery. That was back in 1997. I went through 9 months of tests. In September of 97 the neurosurgeon did a temporal lobectomy. It made a big difference. I was only having 1 every 7 months after the surgery. After a couple years they weren’t quite satisfied. So they put in a VNS. It has made a whole lot of difference for me.thank.you Dr. Thadani and to the Neurosurgeon Dr. Roberts. They are my super heroes.
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Comment by Royvickie — March 25, 2026 @ 12:44 PM
And you are a super hero for calling them out!
May I please have their full names and location so that we might share them with the rest of the group?
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Comment by Phylis Feiner Johnson — March 25, 2026 @ 1:25 PM
Dr Vijay Thadani he is a professor of neurology at Dartmouth. Unfortunately I am losing him as my epileptologist. He will be retiring in June. But will be working part-time. He wants to stay at Dartmouth as a teacher. He will be able to pass on his knowledge to future neurologist.
The neurosurgeon, whom retired several years ago and I also miss dearly is Dr. David Roberts. Because of these 2 I was able to find out what it’s like to learn to have a somewhat normal life. I will always have to take medications but not as much. I have had occasional seizures but not as often . They rarely happen.
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Comment by Royvickie — March 26, 2026 @ 9:33 AM
Wow. Two for two. You hit the jackpot. I’m happy that both your doctors and surgery were so successful.
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Comment by Phylis Feiner Johnson — March 26, 2026 @ 9:58 AM
For me, it was *My Mother. She ALWAYS went to the PTA Meetings. The male “parent” never did. After getting her driver’s license, *My Mother took me, HERSELF, to all my major appointments, like Doctor, Neurologist, etc.***TODAY, March 25, 2026 makes *60 YEARS Ago *My Mother DIED!!! I was just 14 years old. EXACTLY 3 weeks before “becoming 15 on April 15th.” THEN, The Unthinkable Happened! My mother died from *Uremic Poisoning in the hospital!!!”WHAT IS UREMIC POISONING, You Say?Only from what I understood as a child: Mom ma could No-Longer “Go.” The urine backed-up into her bloodstream, ***Turning Into POISON, Killing My Mother *60 Years Ago, TODAY!!! *She only had *one kidney. Was born that way I sometimes wonder how much this contributed to the death. Mom ma was also a heavy smoker. I am certain this did not help!For anyone who would wish to see *FB Memories Pictures of her, you can look on my site: EJ Parker. ***The ONLY TIME “Mr. Parker” (Yes. I was commanded to call him that name) went with me to the neurologist was That FIRST TIME, After Momma Died. *He wanted To Get That Handshake and words of condolences from Dr. Adams. NOTHING MORE! I went alone, afterwards.Momma had JUST started taking me to Job’s Daughters Meetings, down the street. Granddaddy told Momma she had to start letting me grow-up. About 6 weeks later, I Grew-Up, FAST!On April 15, 2026, if still alive, I will turn 75 years old. I have been waiting to die EVER SINCE Mom ma Died! STILL, I am here for a plan and a purpose Beyond My Understanding.Outside of ABBA FATHER, JESUS CHRIST And HOLY SPIRIT, *My Mother WAS MY ROCK!I Just Never Told Her.For those who STILL have a mother living, ***PLEASE TELL Her *YOU LOVE HER! Don’t wait to give flowers at her grave.DO IT NOW, WHILE SHE IS ALIVE!:-( I still miss you, Mom ma!!! 60 Years Later!Effie Jane
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Comment by Effie Erhardt — March 25, 2026 @ 2:27 PM
Mr Parker sounds like a real jewel. Happily you had your mother in your life. Just not for as long as you would want.
And yes, you brought yourself up. But aren’t you proud of all you’ve accomplished?
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Comment by Phylis Feiner Johnson — March 25, 2026 @ 5:59 PM
I am 58(will be 59 in 7.5wks.) and, my own hero. I have had seizures, since. Needed brain surgery at 13mos.-old(Jun.’68) for a ventricular brain aneurysm, that. Caused hydrocephalus (https://en.wikipedia.org/wiki/Hydrocephalus). I had five shunt/’annie’ revisions by 9yrs.-old(1976). Thankfully, None since then.
I was married(1992-2000) to a woman three months older than me, but. Apparently too immature to accept any kind of responsibility when it came to my health. Almost resulting in my death.
Sure my parents’, paternal grandparents’, and two aunts were there while I was in brain surgery.
I have relatives who are my generation, my parents’ generation, and my kids’ generation. But, While a younger cousin(they were 8yrs. younger than me) died from a lifelong(apparently) health issue. I have been coping with feeling alone in my battle with three incurable health issues. My relatives are too old and/or, too far. To be able to care about my health. I also don’t trust the medical system to not make a major mistake with my complicated health. I have a medical necklace that vehemently states, I cannot have an MRI.
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Comment by Christopher Range — March 26, 2026 @ 3:50 AM
Christopher it sounds like you’re quite alone and have had to be your own advocate. While many of us have been able to draw strength and caring from others, you’ve had to go it alone.
And as strange as this might sound, I give you my congratulations for being a survivor.
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Comment by Phylis Feiner Johnson — March 26, 2026 @ 9:55 AM
When you say hero, the first person who comes to mind is my sister. She was 15 years older than me and she took good care of me. She had to pitch in because my mom was battling with pancreatitis and needed our care more than she could show hers.
I hope I wasn’t a problem for my sister because I followed her everywhere and she just showed her love. When I was 16, she gave birth to my nephew and there were problems. She was in the hospital for a month and one day I hear from my brother she died from a blood clot. She was gone but clearly not forgotten.
This happened over 50 years ago and I think of her every day. I can still see her face and feel her love and I give her credit for making me feel confident about my brain surgery. I followed her a lot. I hope she’s following me.
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Comment by Ed Lugge — March 27, 2026 @ 4:19 PM
As long as someone lives in your heart, they are forever alive. And it sounds like your sister will be in your heart forever.
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Comment by Phylis Feiner Johnson — March 27, 2026 @ 5:13 PM