Epilepsy Talk
Yee-Haa! I’m officially an author | January 15, 2020
You probably remember that my introduction to epilepsy wasn’t a rosy one. (Whose is?)
It really wasn’t until once I was older and came out of the closet that I was willing to share my “dirty little secret”.
And now look where I am.
I’ve just been featured with my own chapter about my epilepsy life and advocacy in Steven Schachter’s new book Visions: The Inspirational Journey of Epilepsy Advocate.
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Epilepsy Talk 
Congratulations!!
Always enjoy your perspective and information! Keep up the good work. One day would you consider conducting a survey of your readers about their experiences living with epilepsy. It would be interesting to read the findings. I always hoped my neurologist would have a questionnaire that may be part of a national research study or the findings may reflect we all have more similarities/experiences that we may think as we’ve been on this journey. Maybe it’s something to consider.
Again, congratulations on being published.
Tina C
Sent from my iPhone
>
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Comment by TINA CHIOZZA — January 15, 2020 @ 6:32 PM
Hi Tina,
I tried to get a book together of other peoples’ experiences with epilepsy.
And try as I might, I could only get 10 people to participate.
Also, writing a book like that is very complicated with permissions, copyrights, etc. as I found out when participating in Dr. Schachter’s book.
There were a million forms and releases to sign.
If I couldn’t get people to participate, how would I usher them through the copy editing and legal morass?
So, reluctantly, I gave up my project. 😦
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Comment by Phylis Feiner Johnson — January 15, 2020 @ 8:13 PM
TRY TRY AGAIN PHYLIS!! You may JUST BE SURPRISED!! My grandma used to tell me “ANYTHING WORTH WANTING SO BAD ALWAYS COMES WITH SWEAT AND SOMETIMES SWEAT, FEARS AND TEARS!! That way it’s GREATLY APPRECIATED AND NEVER FORGOTTEN! Plus EVERYONE ALWAYS LEARNS A LESSON IN THE END!! 😘
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Comment by Kathy S.B — January 15, 2020 @ 10:19 PM
I love your Grandma’s saying about “sweat, fears and tears.
You know Epilepsy Talk is a labor of love.
And sometimes it involves one or sometimes another. 🙂
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Comment by Phylis Feiner Johnson — January 15, 2020 @ 10:25 PM
Thank you Phylis 😊🙏🏼🦅😇😘. IF I WERE TO WRITE I would have to have agree with you. I’ve had people tell me I could/should write a book, but in my culture we never necessarily wrote things because we were told the story, shown the lesson and how to either not do something or to do something to keep life flowing in a sincere, content positive fashion. Then we would have to show it back to our grandparents/great grandparents and that’s how we I was taught. So all in all the lesson is in the story (life) itself. Thank you for the lesson I sincerely congratulate you Phylis 😘🙏🏼🦅😇💗
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Comment by Kathy S.B — January 15, 2020 @ 11:53 PM
That is wonderful, Phyllis. You are an excellent writer. Is the book upcoming or is it already out?
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Comment by paleobird — January 15, 2020 @ 8:00 PM
Thanks. The book came out about 6 weeks ago. It’s available through Amazon but is a hefty $50!
I think it’s aimed to be a textbook, since it’s published by Oxford University Press.
Why else would someone pay to read 50 peoples’ experiences as epilepsy advocates?
That’s $10 a person! 🙂
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Comment by Phylis Feiner Johnson — January 15, 2020 @ 8:17 PM
Congratulations Phyllis!
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Comment by trekkie80sgirl — January 15, 2020 @ 8:32 PM
THANKS!
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Comment by Phylis Feiner Johnson — January 15, 2020 @ 8:35 PM
Thank you for your dedication to the cause. You are an inspiration and a great resource for me, a family member of someone who is afflicted with epilepsy. May 2020 be the year for freedom!
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Comment by lmillerwnc — January 15, 2020 @ 9:12 PM
Wow. I’m going to get a swelled head. (No pun intended!)
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Comment by Phylis Feiner Johnson — January 15, 2020 @ 10:01 PM
Congratulations! I’m so glad your voice is in print, available to as wide an audience as possible. You are a true hero and advocate for the Epilepsy community. (Makes me feel better on a day when I’ve had 2 seizures!)
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Comment by Sarah — January 15, 2020 @ 9:30 PM
Oh Sarah, I’m so sad you had two seizures today.
Nonetheless, thank you for your thoughtfulness and congratulations.
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Comment by Phylis Feiner Johnson — January 15, 2020 @ 10:02 PM
What I love most about your writing is knowing I’m not alone. Thank you.
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Comment by Sarah — January 15, 2020 @ 10:09 PM
Oh Sarah, you’re never alone.
You can come here to discuss things, ask questions, share information, and yes, even vent.
We’re here to listen. With care, consideration and compassion.
Please. Never feel alone.
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Comment by Phylis Feiner Johnson — January 15, 2020 @ 10:17 PM
When were you ever NOT an author? This was far due. Eventually, you’ll write and publish your own book just from you collection of material on this site!
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Comment by Anonymous — January 15, 2020 @ 9:56 PM
You know I HAVE thought about writing a book.
But after being a part of this process, I’ve realized how difficult and complicated it can be.
If it’s people’s stories, you have to get permissions, copyrights and all kinds of mumbo jumbo.
And if it’s an informational book, there are legal fact checks, copy editing, bibliography references, and an index to figure out.
After this endeavor, seeing all that Dr. Schachter had to go through, I’ll stick to my website and Epilepsy Talk family!
Nothing could be more satisfying. Even if being published is exciting.
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Comment by Phylis Feiner Johnson — January 15, 2020 @ 10:09 PM
I agree with this question and kind Word of Encouragement. Go For The Gold, Philis! You have been there for us. Now, it is our turn.
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Comment by Effie Erhardt — January 16, 2020 @ 8:28 PM
Congratulations Phylis!! 😃😃. There couldn’t be a BETTER PERSON TO WRITE IT OTHER THAN YOURSELF!! 😘 of course with the help of 50 OTHER BRAVE SOULS!! 😊👍🏽. YOU MAKE ALL OF US PROUD!! 😘. You HELP EVERYONE SO MUCH MY FRIEND 😊. GOOD LUCK 😊🙏🏼🦅😇💞😘
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Comment by Kathy S.B — January 15, 2020 @ 10:08 PM
All those other people just start to touch upon the struggles we all go through.
Every life has a story. And this book tells some unbelievably courageous stories.
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Comment by Phylis Feiner Johnson — January 15, 2020 @ 10:14 PM
If you asked me I would have GRATEFULLY HELPED!! If I could have. 😊🙏🏼🦅😇💗😘
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Comment by Kathy S.B — January 15, 2020 @ 10:21 PM
Yes, I’m sure your addition would have been a good one.
But I didn’t know you then.
I didn’t know most of you then.
Epilepsy Talk started as a very small family.
Some are still here and some are gone. (Literally.)
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Comment by Phylis Feiner Johnson — January 15, 2020 @ 10:29 PM
🙏🏼🦅😇😘
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Comment by Kathy S.B — January 15, 2020 @ 11:55 PM
This is wonderful and gives all of us hope! Congratulations!
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Comment by Tami — January 15, 2020 @ 11:06 PM
Thanks so much for your support, Tami!
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Comment by Phylis Feiner Johnson — January 16, 2020 @ 9:09 AM
Congratulations Phylis, It’s pleasing to note that you got the deserving credit you’ve been entitled to, encouraging & uplifting many other lives to overcome the hardships they got to live with.
Yes Phylis, your inspirational journey has made our lives a whole lot better, when it all seemed impossible to survive for another day with the medical nightmare we have to live with.
Yes Phylis, Sharing your inspirational journey had made our lives a whole lot better in discovering the mystery behind Epilepsy & how to cope with our seizures.
The book will certainly inspire many more people to learn more about Epilepsy & encourage many more patients & their families to come out from the woods, just like I’ve tried to hide in for few years, before learning about EpilepsyTalk to share my deep secret with the rest of the world.
Thank you for your hardwork, you made exceptional difference in my life.
I hope the book gets adopted into film to reach out, educate, inspire & encourage many more uninformed people to seek remedy for their medical hardships.
Gerrie
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Comment by BahreNegash Eritrea — January 15, 2020 @ 11:54 PM
Thank you Gerrie.
I do hope the book inspires others to read and tell their stories.
Not to stay in the dark which was the big problem for me.
And many of us.
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Comment by Phylis Feiner Johnson — January 16, 2020 @ 9:12 AM
Congratulations!
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Comment by Tom Waltz — January 16, 2020 @ 12:15 AM
Thanks Tom!
I couldn’t do it without all of your support.
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Comment by Phylis Feiner Johnson — January 16, 2020 @ 9:13 AM
Congratulations, Phylis!
I just write poems. In fact, I sent you one about 8-10 years ago. It makes a big difference when you can let it all out by writing.
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Comment by Ed Lugge — January 16, 2020 @ 10:37 AM
I agree with you whole heartedly. It’s sort of a catharsis for me.
Your poem was probably among the things I never got to publish when I didn’t have enough material for my book.
But, I’m sure I still have it.
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Comment by Phylis Feiner Johnson — January 16, 2020 @ 4:19 PM
Congratulations
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Comment by Flower Roberts — January 16, 2020 @ 3:17 PM
Thank you so much, Flower!
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Comment by Phylis Feiner Johnson — January 16, 2020 @ 4:19 PM
That is great! Congratulations! Now you get to educate the educators, and hopefully be compensated for it.
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Comment by Marlyn — January 16, 2020 @ 4:00 PM
“From your mouth, to God’s ear!”
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Comment by Phylis Feiner Johnson — January 16, 2020 @ 4:20 PM
Congratulations !! A well deserved distinction.
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Comment by Christine Douglas — January 19, 2020 @ 12:34 PM
Thank you so very much Christine.
Hope all is going well for you.
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Comment by Phylis Feiner Johnson — January 19, 2020 @ 12:46 PM
Congratulations!! You are a fantastic writer and this is well deserved! Next up, something from us bloggers about the incredible stigma, sexism, racism and lack of employment inherent in having epilepsy??
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Comment by skolly9 — January 19, 2020 @ 3:35 PM
Actually, I wanted to do that 10 years ago (believe it or not), but it became too cumbersome and complicated because of legal issues.
Thanks for your congrats!
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Comment by Phylis Feiner Johnson — January 19, 2020 @ 7:48 PM
Excellent idea Skolly!
We have been voluntarily sharing our stories on all segments of this informative forum for many years, all we need to do is providing some technical assistance to Phylis, editing the whole forum into various sections of your suggestions.
The massive volume of information of this forum collected for years can be overwhelming for one person to screen, edit & publish according to your suggestion.
Therefore, let’s ALL put our hands together & make it possible for the whole world to learn the costly price & formidable willpower to live with Epilepsy.
Gerrie
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Comment by BahreNegash Eritrea — January 20, 2020 @ 4:16 AM
What I was thinking of was personal stories of each person’s journey through epilepsy.
Otherwise, I would need references and a bibliography for each segment, plus an index.
And some of these articles come from different segments, so that would be difficult to achieve.
Besides, I thought that epilepsy from a personal point of view was more compelling.
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Comment by Phylis Feiner Johnson — January 20, 2020 @ 10:43 AM
Phylis,
Joining your inspiring journey, I agree with you we all have stories to tell & experience to share in the struggle against epilepsy.
Unfortunately, we all don’t have the professional skills to research & write educational & informative articles like you do, making you suited in better position, brilliant candidate & major roll to speak & write about Epilepsy than many of us do.
Therefore, while the whole process of screening the whole data collected for decades can be overwhelming cumbersome, demanding a lot of time, energy, resources, uncompromising attention & hardwork, you’re far more informed & potentialy capable to write books than many of us, who’re sharing your inspiring journey.
In fact, I would recommend you to carry out Epilepsy conferences all over the world to educate many Neurologists in our universities & hospitals, who don’t have the deep knowledge & experience like you do.
Gerrie
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Comment by BahreNegash Eritrea — January 20, 2020 @ 4:09 PM
Gerrie, you give me too much credit.
And it would literally take YEARS!
Dr. Schachter’s book which was personal accounts of epilepsy advocates took 3 years to assemble.
And that was with people telling their own stories.
Not scientific articles.
You don’t need to be a writer, poet, artist, or anything else to express your journey and tell your story.
Many less literate than this family here have done it.
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Comment by Phylis Feiner Johnson — January 20, 2020 @ 4:15 PM
Yes Phyllis.
As you can see the family on this forum growing, you brought us together & made it possible for many of us to share our experience, seek answers, find remedy & deep understanding of our medical hardships we’ve been having difficulty to live with.
If it wasn’t for your commitment & hardwork to carry out this educational forum, many of us would still be stuck in the darkness in the desperate search for answers to our medical hardships.
Yes Phylis, we learned to cope & survive the most difficult part of our lives from you & your inspiring journey to overcome the struggle against our own medical hardships by joining your informative forum.
You made a whole lot difference in our lives more than you will ever come to know.
Thank you for sharing your inspiring journey.
Gerrie
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Comment by BahreNegash Eritrea — January 20, 2020 @ 5:09 PM
And thank you, from the bottom of my heart.
Coming from you Gerrie, that means a lot.
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Comment by Phylis Feiner Johnson — January 20, 2020 @ 5:42 PM
Belated congrats to one of my heroes. Many happy returns!
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Comment by HoDo — January 23, 2020 @ 11:34 AM
That means a lot coming from someone I respect so much!
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Comment by Phylis Feiner Johnson — January 23, 2020 @ 12:36 PM