Epilepsy Talk

Tell Us Your Story! | July 22, 2011

I’ve got a book cooking in me! And I’m so excited, I couldn’t sleep!

Here’s the premise: What better way to educate people about epilepsy than by telling OUR own stories? (I’m sure they’re as different as we are!)

They can be in text, poetry, art or photography (if you send me a file), whatever format you wish. (Except music. I wish I could.) But the emphasis is on you…YOUR LIFE…YOUR EPILEPSY…HOW IT AFFECTED YOU.

All I need is a title, your name (which will be abbreviated) and your age. If you’d like to retain privacy, email me at pfjohnson@comcast.net  Let the book begin!!!


73 Comments »

  1. I thought you said that you didn’t write books?

    I’ve sent you my story,
    Your welcome to copy from that, edit it down to what you want as long as it’s not reworded.
    That is unless you need something more generalized.
    It’s not copy righted and privacy’s no problem.

    Like

    Comment by mkfarnam — July 22, 2011 @ 2:54 PM

  2. I thought you said that you didn’t write books?

    I’ve sent you my story,
    Your welcome to copy from that, edit it down to what you want as long as it’s not reworded.
    That is unless you need something more generalized.
    It’s not copy righted and privacy’s no problem.

    Like

    Comment by mkfarnam — July 22, 2011 @ 2:54 PM

    • Well, there’s always a first time! 😉

      Which parts of which posts do you think I should take your story from? Or would you rather choose what you’d like to make public or not? (Since this is basically a private website.)

      Your wish is my command! (Oh, is it ok to change the punctuation and/or cut and paste parts for continuity?)

      Like

      Comment by Phylis Feiner Johnson — July 22, 2011 @ 4:43 PM

      • That’s what part editing is about isn’t it?
        In other words, of course.

        Like

        Comment by mkfarnam — July 22, 2011 @ 4:50 PM

  3. Are you really from Australia???

    Like

    Comment by Phylis Feiner Johnson — July 22, 2011 @ 4:45 PM

    • Are you asking me? If so, who said I was from Australia? I’m a Yankee just like you. I was born and raised in Michigan, but lived most of my life in California.

      Like

      Comment by mkfarnam — July 22, 2011 @ 4:54 PM

  4. Word Press said in one notification that you were from Australia. Then on the next notification, they said you were from Oklahoma.

    Guess you’ve got them good and confused!!! 🙂

    Like

    Comment by Phylis Feiner Johnson — July 22, 2011 @ 5:15 PM

    • Good..lol

      At least they didn’t say I was Amish..lol

      Speeking of which, I hear that the amish are using cell phones now.

      Like

      Comment by mkfarnam — July 22, 2011 @ 5:25 PM

  5. I Think my Profile on WebMD covers most of My story. You have my permission to write about me. 🙂 Contact me via email if you have questions or want more details. If I can remember them. 🙂

    Like

    Comment by candi — July 22, 2011 @ 6:01 PM

  6. Phylis, you said, “Which parts of which posts can you copy from each one of us.” Am I correct?

    I have said a lot of things in private here, in different posts, that I only wanted to remain here.

    So, how is this going to work. Do I have to go through each post that I put in here to decide what I want you to write about me?

    Are you going to use my name?

    I want you to answer here, in case others have the same questions.

    Like

    Comment by Ruth Brown — July 22, 2011 @ 7:11 PM

  7. No. I want each person to tell their story and what they would like the public to know. I don’t plan to take anything from our emails (I don’t keep them anyway) or our website…that’s family business, although Mike Farnam did ask me to write his “story” from previous posts.

    It’s YOUR story and it should be told as you want people to hear.

    Names will be abbreviated (like R. Brown) and the only other disclosure is your age.

    Like

    Comment by Phylis Feiner Johnson — July 22, 2011 @ 8:29 PM

  8. Thank you Phylis for the explanation. I have a poem that needs to be updated that I might use. Or I will write a story. Boy, that would be a long one.

    I do not care if people know my age.

    Like

    Comment by Ruth Brown — July 22, 2011 @ 8:34 PM

    • Ruth, I seriously doubt that Phylis will publcize anything with out you inspecting it first and then giving her autorization on the go-ahead.

      Unless it’s for the Tabloids,,lol!

      Like

      Comment by mkfarnam — July 22, 2011 @ 8:43 PM

  9. I’m sure whichever one you choose will be wonderful. Although I’m sort of leaning towards your poetry! 😉

    Like

    Comment by Phylis Feiner Johnson — July 22, 2011 @ 8:37 PM

  10. Well, we will see what I choose to tell the world.

    Like

    Comment by Ruth Brown — July 23, 2011 @ 1:07 AM

  11. I also want to choose a poem. May I send two? I think one would be a villanelle (19 lines) and the other “Decrescendo,.” which is short (10 short lines). Is there any kind of problem since the latter is from my book? I’m fine with the abbreviation of our names, and our ages. Yikes, I’ll prob be the oldest one!

    Like

    Comment by Maggie — July 23, 2011 @ 3:13 PM

    • Hi there Maggie!

      Two poems are FINE…except if you send a poem from your book, will it cause a copyright problem? (I don’t know lots about this stuff.)

      P.S. I’m 58 and Mike is right behind me! 😉

      Like

      Comment by Phylis Feiner Johnson — July 23, 2011 @ 7:23 PM

  12. How old you Maggie, I am 68? Are you older that me?

    Like

    Comment by Ruth Brown — July 23, 2011 @ 7:10 PM

  13. Phylis:
    I think I’d like the “Serenity Prayer” added at the end of mine:
    ____________________________________________

    God grant me the serenity
    to accept the things I cannot change;
    Courage to change the things I can;
    and wisdom to know the difference.

    Living one day at a time;
    Enjoying one moment at a time;
    Accepting hardships as the pathway to peace;
    Taking, as He did, this sinful world
    as it is, not as I would have it;
    Trusting that He will make all things right
    if I surrender to His Will;
    That I may be reasonably happy in this life
    and supremely happy with Him
    Forever in the next.
    Amen.
    ______________________________________

    Or maybe this:

    Trust in the LORD with all your heart
    and lean not on your own understanding;
    in all your ways acknowledge him,
    and he will direct your paths.

    Proverbs 3, 5-6

    Like

    Comment by mkfarnam — July 23, 2011 @ 8:34 PM

    • What a WONDERFUL idea. I’ll put the Serenity Prayer with your story. Anyone ever tell you that you’re brilliant! 🙂

      Like

      Comment by Phylis Feiner Johnson — July 23, 2011 @ 10:11 PM

      • Phylis, They go together, the Serenity Prayer and Proverbs 3:5,6.

        I know you can edit what you want but I think both should be put in.

        Like

        Comment by Ruth Brown — July 23, 2011 @ 10:21 PM

      • I just felt that it fits or can be apllied to so many things in life…..Good, Bad or indifferent….Past and Present.

        Like

        Comment by mkfarnam — July 23, 2011 @ 10:54 PM

  14. Mike, put both poems in.together!and then put Amen at the end!! The Bible is a part of you and of me.

    I love the Bible and it has the answers. Like the scripture: Revelation:21, 3,4 With that I heard a loud voice from the throne say: “Look! The tent of God is with mankind, and he will reside with them, and they will be his peoples. And God himself will be with them. 4 And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.

    Isaiah 33:24 And no resident will say: “I am sick.” The people that are dwelling in the land will be those pardoned for their error.

    These prophecies will come true, soon.

    Like

    Comment by Ruth Brown — July 23, 2011 @ 8:57 PM

    • Ruth,
      ( for my story) I think a short ending prayer or poem, with the right words arranged to where it all comes out to this:…”LIFE MOVES ON”.

      Or something to that effect.

      Like

      Comment by mkfarnam — July 23, 2011 @ 11:15 PM

      • Is all that’s needed.

        Like

        Comment by mkfarnam — July 23, 2011 @ 11:16 PM

  15. Mike, I am not trying to tell you how to write your story. It is up to you. I agree with “LIFE MOVES ON.” Is that your title. It is perfect.

    I wish that I could think of something so brilliant. Phylis is right, you are brilliant.

    Like

    Comment by Ruth Brown — July 23, 2011 @ 11:37 PM

    • What I’m saying is: the meaning of The Serinty Prayer is “Life moves on”, at least that’s how I see if.

      Like

      Comment by mkfarnam — July 23, 2011 @ 11:46 PM

  16. Right now, Phylis needs to cool off or she’ll have a heat stroke.LOL!
    She spent 5 hr’s on my story and then found out that I already wrote one.
    But there’s something she doesn’t know. But I’ll wait till’ she cools down to tell her. LOL!!!

    I have to go to Bible Study so I’ll talk later.

    Like

    Comment by mkfarnam — July 23, 2011 @ 11:52 PM

  17. Phylis, I hope your A/C is working. Go to a shopping mall or someplace to cool off.

    Love and HUGS

    Like

    Comment by Ruth Brown — July 24, 2011 @ 2:23 AM

    • When I said “cool off, I meant she was upset at me. lol

      Like

      Comment by mkfarnam — July 24, 2011 @ 3:08 AM

  18. Phylis,
    I’ve had the same idea for a while now. With a twist. I just can’t seem to get my seizures under control enough to think straight most of the time. That’s why I don’t write here as much as I would like.

    I have a letter that I wrote back in Nov. (epilepsy awareness month.) I sent it to all local, state, federal gov. reps. Even the president. I also sent it to local media, newspapers and tv news. Not ONE response!! I’ll email that to you.

    I’ll have to get an update since then but it’s a start!
    Cari

    Like

    Comment by cmaclean44 — July 24, 2011 @ 6:50 PM

  19. Mike, I think Phylis is going to be frustrated with most of us before we finish writing our stories.

    Now, Phylis, you told Maggie that you were worried about copyright problems. Maybe, you should do some research on that.

    I know that on one of my poems, maybe both that other people, I know have copyrighted them and put them in their books to sell them. I did not copyright any of my poems.

    Other’s did, though. One person told me that he was copyrighting my poems. I said, okay.Other people may have copyrighted my poems, as well. They have sold them.

    Do you still want my poems?

    Like

    Comment by Ruth Brown — July 26, 2011 @ 2:31 AM

    • When something is copyrighted on the internet, on the same page there is usually a link where you can ask permission for copies.

      Like

      Comment by mkfarnam — July 26, 2011 @ 3:26 AM

    • I haven’t gotten legal counsel yet, so I don’t know.

      I have to wait until I have all of the stories assembled — which will take quite a while — since I hope to get stories from our summer camp in August, my local Epilepsy Foundation and, if possible, the main Epilepsy Foundation, also.

      Plus, I’ll be starting an Epilepsy Support Group at our local hospital and I hope to get some of their stories, too.

      I will then contact a lawyer and a copy editor to go over the stories. Or do you think I should contact a lawyer now?

      Maggie has a wonderful poem which is in her book and I’ve asked her the same question, whether I can include it in our book.

      Like

      Comment by Phylis Feiner Johnson — July 26, 2011 @ 2:27 PM

      • I live in Northern Arizona, and though we have many support groups, there isn’t one for epilepsy, which is sorely needed.

        Copper, the The Epilepsy Foundation of Arizona has support groups in Phoenix (Spanish Speaking), Yuma, Sierra Vista, Lake Havasu City and Phoenix.

        http://www.epilepsyaz.org/

        Like

        Comment by mockenart — February 23, 2013 @ 3:07 PM

  20. Mike, that is my point, you have to ask for permission. I do not who copyrighted my poems. I think more than one person copyrighted my poems.

    I never cared, because I was writing my poems to share with others and not to make money.

    Like

    Comment by Ruth Brown — July 26, 2011 @ 4:05 AM

  21. If you wrote them, then no one but you can copyright them.
    A copyright can only be held by one person or company at a time. In order for another person to hold a copyright on the same thing. They must buy the rights from the original holder.

    In my opinion, I don’t how anyone could hold a copyright on any Biblical Scripture.

    When something is copyrighted.
    It must say “@opyright” at the bottom

    Like

    Comment by mkfarnam — July 26, 2011 @ 4:20 AM

  22. Mike, when I first started writing poems, my husband and I checked into copyright’s. We went to the Federal Government, Copyright Division. They are the one’s in charge of copyrights. They charge a fee and then you can copyright all of the books, poems, etc. that you have written.

    You let the Federal Government know each time you have something to copyright. Then no one else can copy them. People can quote from what you copyright, but they have to give you and the book the credit.

    I did not do that. Therefore, it is public property and belongs to anyone. Someone else can copyright them. The Federal Government has no knowledge that I wrote the poem.

    Mike, if you look inside your Bible, you will see that it is copyrighted. True, you can quote the scriptures with no problem. You have given your credit to the chapter and verse and writer in the Bible. All Bibles are copyrighted!!

    Phylis will have to copyright the book that she is writing!!

    Like

    Comment by Ruth Brown — July 26, 2011 @ 2:28 PM

  23. Phylis, you must know that everything the Epilepsy Foundation has is copywrighted. That is why we have to quote everything about. In fact, I would find out if WordPress has any rights to your website.

    You will need legal counsel to find out. It is better is we email our stories to you. Then, for certain WordPress will not own any rights to any of the stories that you get from us.

    You have told me that you have put links in to prove your points. There is another reason. You are giving the copywright’s to the people or person who wrote the article.

    Like

    Comment by Ruth Brown — July 26, 2011 @ 2:48 PM

    • I don’t have any links to put in. All I have are people’s email addresses which are private and the names which will be abbreviated as requested.

      Are you talking about links to the original copywrited sources?

      Like

      Comment by Phylis Feiner Johnson — July 26, 2011 @ 3:09 PM

      • As far I know, noone has claimed rights to my story.
        And Phylis, You have already been given permission by the “legal source” of the story “ME” to write and edit my story which ever way you see fit.
        If a written and signed statement is needed, so be it,
        give me an adress and I’ll send one.

        Like

        Comment by mkfarnam — July 26, 2011 @ 4:47 PM

  24. Phylis, as long as you put down our first initial and last name, like r. brown. Plus, my age, because there are a lot of r. browns. I am giving you written permission for you to copyright my story. I am going to write an original story or poem and send it directly to you, by email. That way, you can use our stories. You will be giving credit to me.

    I brought this up because of the Serenity Poem. Mike, did you write that yourself? If not, then you have to quote it from the original source. I have heard of the serenity poem.

    If it is one of the Psalms, then you put down the Psalms, Chapter and the verses. Then you are giving the correct credit.

    If you are quoting from someone else, then you give the credit to the person, the name of the book that you are quoting from.Am I right about that Phylis?

    Phylis, do you know if you have to give any credit to WordPress? That is why I am going to write a new story about me or a new poem and give it to you. That way you can use it, without any problem.

    That is why everyone should email their story to Phylis. I will not have to worry about WordPress.

    Like

    Comment by Ruth Brown — July 26, 2011 @ 5:19 PM

    • Your right Ruth.

      You must give credit, where credit is due.

      Phylis is already ahead of you. The stories will be written, edited and approved via email.

      I only want to first part (most common) of the Serenity Prayer
      ______________________________________
      GOD, Grant me the serenity
      To accept the things I cannot change,
      Courage to change the things I can.
      And the Wisdom to know thw difference
      _______________________________________.
      And Phylis, I would also like to “dedicate” this story our Mother who passed away @ the age of 34.

      )) Her name was also Phyllis..with 2 L’s((

      Like

      Comment by mkfarnam — July 26, 2011 @ 5:52 PM

    • Mike, yes. When the book is ready and we all have final drafts, there will be a legal release form that everyone has to sign.

      It’s standard operating procedure. I have to do it every time I write copy for one of my clients.

      Ruth, NOTHING is the property of WordPress. They are a web service provider, period. EpilepsyTalk is registered (bless Arthur) and belongs solely to me.

      And everyone IS emailing their stories, poems, etc, to me…for privacy reasons. At least until we have a completed book. (I should live so long!)

      Like

      Comment by Phylis Feiner Johnson — July 26, 2011 @ 6:28 PM

  25. About “The Serenity Prayer”

    Well girls and boys, here’s a REAL shocker…

    “Now, a law librarian at Yale, using new databases of archival documents, has found newspaper clippings and a book from as far back as 1936 that quote close versions of the prayer. The quotations are from civic leaders all over the United States — a Y.W.C.A. leader in Syracuse, a public school counselor in Oklahoma City — and are always, interestingly, by women.

    Some refer to the prayer as if it were a proverb, while others appear to claim it as their own poetry. None attribute the prayer to a particular source.”

    http://www.nytimes.com/2008/07/11/us/11prayer.html

    Like

    Comment by Phylis Feiner Johnson — July 26, 2011 @ 6:42 PM

  26. Ruth.

    primary email>>mkfarnam54@gmail.com

    Or mkfarnam@yahoo.com

    But I avoid using “yahoo” for reasons beyond my control….

    Like

    Comment by mkfarnam — July 26, 2011 @ 6:46 PM

  27. Mike, it is on record as being copyrighted over 484 times in the Library of Congress. That means it has been revised over 484 times.

    To give due credit to the revision that you have, what book did you read it from, what year, who wrote the book. There is only one revision of the one that you have

    Give me the name of the book and I can give you the correct credit due.

    Like

    Comment by Ruth Brown — July 26, 2011 @ 8:54 PM

  28. Ruth, please read the entire NYT article posted above. The Serenity Prayer can NOT be attributed to any ONE person.

    Like

    Comment by Phylis Feiner Johnson — July 26, 2011 @ 9:09 PM

  29. I looked under the Serenity Prayer. I found the exact same one that you have, including the scripture. There is no year or book mentioned.

    To give proper credit, you have to put in the whole Serenity Prayer and the scripture. Or else you will have revised it again. I like the whole prayer and scripture anyway.

    At the end of the Serenity Prayer you put, as your credit:

    by Reinold Niebuhr.

    Like

    Comment by Ruth Brown — July 26, 2011 @ 9:14 PM

  30. PLEASE READ. THIS IS IMPORTANT.

    I have decided that we will not have any materials published by a 3rd party in our book. (Except those that are in public domain, like the Serenity Prayer)

    Per a lawyer friend of mine, I would have to hire an “intellectual rights lawyer” which is way too expensive and beyond my reach.

    If your story or poem has been previously published by a third party and is not in public domain, could you please select an alternative, written by you.

    That is the end of the controversy. Let’s get back to the book itself.

    Like

    Comment by Phylis Feiner Johnson — July 26, 2011 @ 9:15 PM

    • I promote my husband’s artwork, the best I can, but none of what I’ve written here has been published or will be published, I’m just utilizing this website to log on to share my experiences and hope.

      Like

      Comment by mockenart — February 23, 2013 @ 3:01 PM

  31. Phylis, I did read the whole article in the NYT. It is not an accurate article. I can tell because there were two other people that he said did not have the famous sayings that I know they did. I looked up the Library of Congress and put the name The Serenity Prayer. The Library of Congress has 484. That means that it has been revised that many times.

    I looked up The Serenity Prayer and looked up the exact same one that Mike has. It does not have a year. It was written by Reinold Niebuhr. The credit goes to him. It is because it is the exact one. It is at the top. I know what I am talking about.

    There is no year mentioned. He wrote it. Google the Serenity Prayer. You will find the exact one that Mike has and the writer.

    Like

    Comment by Ruth Brown — July 26, 2011 @ 9:24 PM

  32. If Maggie wrote the poem then the credits are easy. She just signs her name, the date, year and the name of the book that she put it in.

    Like

    Comment by Ruth Brown — July 26, 2011 @ 9:34 PM

  33. Phylis, I just wrote you and told you how my son got an A.

    You do not know if it is copyrighted or not. You give credit where credit is due. It might be copyrighted. Revisions have been copyrighted 485 times in the Library of Congress. You cannot copyright what some one else has done. It is not morally right. If it is in the Library of Congress, copyrighted by him then you would be in trouble. He just did not put the copyight sign down.

    The credit is given to Reinold Niebuhr. Under the prayer just put his name down, like it is in the poem. The scripture goes with the poem. You do not have to put it under works cited, if you do it that way. You will all ready have given him the credit.

    I am tired, I am going to take a nap.

    Like

    Comment by Ruth Brown — July 26, 2011 @ 10:34 PM

  34. I have started writing my story. It will not take too long. I am just going to give the highlight of what I have been going through.

    Like

    Comment by Ruth Brown — July 29, 2011 @ 5:56 PM

    • Ruth,
      I’m glad to hear you got started. There’s no big rush, so just take your time and try to remember as much as Possible.

      Like

      Comment by mkfarnam — July 29, 2011 @ 6:24 PM

  35. Thank you Mike!! I am taking my time!! It is important to us that we right it so it sounds right.

    Like

    Comment by Ruth Brown — July 29, 2011 @ 7:03 PM

  36. I’m still working on my story, I keep getting sidelined by other good things happening (Support Group start-up) But, I’m still working at it. I hope y’all doing well

    Like

    Comment by Charlie — August 16, 2011 @ 2:04 AM

  37. Hi Charlie,

    Like Mike said, take your time. You want it to be something that you will want the whole world to see.

    I finished mine, and I am happy with it.

    So take your time. There are probably others who have not finished there stories either.

    Like

    Comment by Ruth Brown — August 16, 2011 @ 2:17 AM

  38. I’ve edited one paragraph that has been sent to Phylis.

    I have alot of thing going on too, so that’ a big delay.
    My biggest problem though, is remembering the right dates and times.. My brothers or sister don’t want to help. but I really don’t want to go into it with them.

    Like

    Comment by mkfarnam — August 16, 2011 @ 4:00 AM

  39. Hi Mike,

    When I could not remember a date or time, I did not worry about it. I just left it out. Like the time I went to summer camp. I have no idea of the year or date. I included it because it was an important part of my life.

    Phylis will edit your story, as well. Then you can check out what she changed. You both have to be happy with what you tell. Like Phylis said, put in what you want the whole world to know.

    After a couple of editings by both her and me, we were both happy with it. I will forward my story to you. Or did I all ready do that?

    Like

    Comment by Ruth Brown — August 16, 2011 @ 6:19 AM

    • yes,you’ve sent your story to me once.

      Like

      Comment by mkfarnam — August 16, 2011 @ 1:41 PM

  40. Hi Mike,

    I do not remember but if you say I did, then I did. Sorry about that. Please overlook my bad memory. I know you will because you are a good friend.

    Like

    Comment by Ruth Brown — August 17, 2011 @ 2:13 AM

  41. My name is Copper, or Penny for short, but my given name is Etta. Living with seizures has been for me, like living with Jekyll and Hyde. It seems like more often than not, my body betrays me, making it very difficult to ignore that other side exist, because my deepest longing is just to be ‘normal.’ But, what is normal today? There isn’t any such thing, but, I wish for one week my body would quit betraying me and function the way I want it to so I can finish what I set out to do in a timely manner, but, that rarely happens any more.

    From falling down a flight of stairs when I was just twelve years old, turning my world upside town on its head., My seizures have gone from easily maintained through a simple dilantin regime, now in my early fifties it’s become far more complicated which has caused me to withdrawal within myself when I feel the most vulnerable.

    But, I admire those who can laugh at themselves not only their hidden strengths, but more importantly their weakness, because I’d like to learn to smile and laugh at myself then choose to be a bummer because nobody likes being around a rain cloud because we’re all in this together.

    Like

    Comment by mockenart — February 23, 2013 @ 2:54 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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