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Topic: ClusterHeads - We Need You! (Read 1159 times) |
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rgasperson
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ClusterHeads - We Need You!
« on: Jul 24th, 2006, 12:10pm » |
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I had this idea about a week ago, and a few people thought it might be a good idea. I want to put together a book of prose, poetry, photography, and artwork where 100% of the profits will go to OUCH (Organization for Understanding Cluster Headaches).
This is where I need your help. I need you to help supply content for the book. Without you, this book willl not even get off the ground. Look at the following questions and provide an answer for one or all of them.
1. How would you describe the Beast that is your Cluster Headaches?
2. Do you Remember your first Cluster Headache? What was it like and what were the reactions of those around you?
3. What comforts you most during your cycle? why?
4. What would you like to say to someone who is just discovering that their Headaches are really cluster?
5. Do you support a loved one who suffers from Cluster Headaches? Describe what it is like for you to watch them go through the pain, and what you do to try to help them.
6. Do You have any Photography or artwork that is inspired by the pain, or the pain-free moments? email these pieces to <a href="mailto:robert@roberttgasperson.com?subject=CLUSTERHEADS">robert@ro berttgasperson.com</a>.
Please tell everyone you know about this post and have everyone you know write something about Cluster Headaches. I will be taking the right to fix your grammar and spelling. I will not change what you write beyond spelling and grammar without asking first.
No one will be paid for their submissions. I will not be keeping any of the profits. Every penny of the profits WILL be going to OUCH.
Wouldn't it be nice to get one of these books in every Neurologist office in the USA.
May you All have Pain Free Nights and Days,
A CH Supporter,
Robert T Gasperson
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Robert T Gasperson
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Yorky
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Re: ClusterHeads - We Need You!
« Reply #1 on: Jul 24th, 2006, 12:15pm » |
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ps will you use a picture of me(would help sell loads of copies)cheers and its a exel idea!
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today is a gift.....thats why it is called the
present.
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Mattrf
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Re: ClusterHeads - We Need You!
« Reply #2 on: Jul 24th, 2006, 1:44pm » |
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1: The beast is a clever thing, hiding quietly waiting for when you least expect him to attack, and when he does attack he takes no prisoners and is relentless in his attack.
2: s misdiagnosed as a Sinusitis attack, it was the worse I had ever felt and the longest.
3: The laughter and smile of my little girl and the compassion of my wife.
4: You are not alone in defending yourself from this beast, gain strength from your fellow suffers and be strong, never let the beast get the better of you.
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There is no stronger a person then one who can deal with brain pain and still function.
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Charlotte
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Re: ClusterHeads - We Need You!
« Reply #3 on: Jul 24th, 2006, 1:50pm » |
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How serious are you? I may not have that format in mind, but it would be so helpful if there was some kind of info sheet or booklet available, for Drs & for us. Ouch has a little booklet that my husband found quite informative.
Would this be to celebrate the good things we do, or to share our misery?
It would be helpful if Drs told people about clusterheadaches.com. One of my Drs told me about WebMD but it would have been better to know about this site, back then.
Charlotte
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| « Last Edit: Jul 24th, 2006, 1:55pm by Charlotte » |
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Donna_D.
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Re: ClusterHeads - We Need You!
« Reply #4 on: Jul 24th, 2006, 2:06pm » |
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You might get with Mike Day (Gator). He already has a lot of this information on DVD. He had it available at the Dallas Convention in 2005.
DD
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 The information contained above is for the expressed use of fellow clusterheads and their supporters. Any misuse of this information by any of my "Ex's" is considered to be creepy and a form of harassment and will be duly noted by the ch.com webmaster 
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ClusterChuck
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Re: ClusterHeads - We Need You!
« Reply #5 on: Jul 24th, 2006, 2:30pm » |
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I hope I am not killing a good idea, but who are you? What experience do you have in seeing this project thru? And how do we KNOW that what you say IS what you intend to do? Also, how do we know that you are not some charlatan out to pull some sort of scam?
A lot of this is VERY personal, and I would like to know that it is going where you say it will go.
If everything IS as you say, I know I have lots I could give you, and most likely others do too.
But we have been bitten too many times to just jump at a post like yours.
Chuck
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Thomas Fuller
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rgasperson
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Re: ClusterHeads - We Need You!
« Reply #6 on: Jul 24th, 2006, 5:38pm » |
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 hmmm. Good. There seems to be some skeptics out there about me. I am glad people just don't byte.
Thank you Chuck and Charlotte for asking some good questions. I will be glad to answer them. I will start with who I am.
My Name is Robert T Gasperson. My website is at http://www.roberttgasperson.com if you want to see more about some of my interests, My Resume and Bio.
My wife (Jennifer), who frequents this forum and website, is a cluster sufferer. I married her in April of this year, and this is my first encounter with just how bad these episodes are.
Part of this project is feeling like I need to do something to help. I hate sitting idly by watching my Wife rock in extreme agony. I can't do much while she is in pain, but maybe I can do something to help find a cure.
I am a Graphic Designer for the Carolina MoneySaver (http://www.carolinamoneysaver.com) in Charlotte, NC. I have worked the 6 previous years for the Sun-Sentinel (http://www.sun-sentinel.com)in South Florida. I have plenty of experience to make this book happen.
I plan to use http://www.Lulu.com to publish the book. I already have several (http://www.lulu.com/rgasperson)books for sale through them. When this book becomes available, I will ask that everyone who buys a book, leave some sort of feedback. This will help create a record of the number of purchases of the book. (I am still looking to try to get Lulu.com or Paypal.com to match the donations to OUCH. If someone knows how this might be done, please chime in.)
I know this is very personal for a lot of people, and I don't expect anyone to want their name on their submissions. I would like everyone to specifically request wether or not they want their name or an alias or annonymous posted next to their writing.
I am not here to embarass or to steal from anyone. If it takes setting up an account for the profits from Lulu.com to go directly to OUCH, I would be happy to still do all the work on the book and let the people of OUCH sell and collect the profits. This way I never touch any of the money, and basically no one will ba able to blame me for any of the money stuff.
I am knowlegable in graphic design. I am sure there are others knowlegeable in business and sales. I would really like this to be a group effort.
I hope this alleviates any skepticism about me and my intentions. I plan to be around for a while. I admit, I still have a lot to learn about Cluster Headaches, but that is why I am here. To Learn and to help where I can.
I will be glad to answer any more questions you might have about me.
Robert T Gasperson
robert@roberttgasperson.com
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| « Last Edit: Jul 24th, 2006, 5:41pm by rgasperson » |
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Robert T Gasperson
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Ghost
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Re: ClusterHeads - We Need You!
« Reply #7 on: Jul 24th, 2006, 5:55pm » |
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Here is one I posted on writing.com a while back and entered in a poetry contest.
Again
Again the dance is at hand,
freedom from reality.
Remember not what brings you there,
focus on how to return.
Hold tight to what keeps you whole,
breath through the battle,
steady and strong.
March forward the fight is on.
Keep with you the weapons of war,
dance on, dance on,
march into war.
To hope is not weak,
to flee not a coward,
to stand and fight not a hero,
to live is to win.
The battle ongoing,
the beast at the door,
survivors the victors,
must survive once more.
Because of the battle,
our numbers they grow,
the beast more desperate,
tries to pick a new foe.
Because of this stronger we are,
he knows not we unite,
he thinks he has won.
Brought to us the battle,
one at a time,
not knowing we seek out,
more of our kind.
To him we are weak,
frail and alone,
to him we are one,
to him one alone.
One day he will see
the numbers he has brought,
till then we will find,
a means to his end.
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Illigitimus Non Tatum Carborundum
If all men are endowed by their creator, why was mine so short sighted?
***WARNING*** Oxygen will rust your pipes!
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Ghost
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Re: ClusterHeads - We Need You!
« Reply #8 on: Jul 24th, 2006, 5:57pm » |
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And my Favorite
It was Christmas time across the world,
For most the pain of days past forgotten.
Shorter the days, and longer the nights,
only the beast wanting to fight.
Knowing the pain would return,
his only belief his concern.
Had to still complete the tasks at hand,
even though he was but a man.
Chronic he now is, days without pain remembers.
Knowing it returns like the burning of embers.
Wishing for relief, for just a few days.
His children he knows will have games to play.
How he wishes he could join, but knows he can not finish,
For the pain like a thief will his pleasure diminish.
Try he will, but succeed still uncertain,
if he puts his guard down and his head will start hurting.
A break he will take, when asked will say,
I am doing just fine, go back in and play.
I only know but for this beast would I be,
A Daddy like my children need me to be.
My life a mess I truly believe,
when the gift of family comes back to me.
To let them down, truly a shame it would be,
the Beast I fight and keep it to me.
For it’s Christmas time and my duty is clear,
the Beast will not win again this year.
Not matter how much I struggle alone,
my children and wife, are my true throne.
For with them I win, alone I may falter,
My life it is clear, My family my alter.
To us that battle no matter from where,
We too are family, an alter to share.
Give hope to each other no matter how hard,
Our love for each other, our true Christmas card.
Mike
12/09/05
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Illigitimus Non Tatum Carborundum
If all men are endowed by their creator, why was mine so short sighted?
***WARNING*** Oxygen will rust your pipes!
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theOtherCharlie
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Re: ClusterHeads - We Need You!
« Reply #9 on: Jul 24th, 2006, 6:04pm » |
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What a great idea... Id be happy to help... I'm a designer too... whats that all about? We sniffing too much glue or is the computer screen and carpal tunnel.
I've got a few pictures and several items of prose.
Let me dig em up....
the other Charlie
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tanner
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Re: ClusterHeads - We Need You!
« Reply #10 on: Jul 24th, 2006, 9:15pm » |
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I just wanted to say hi and welcome. Sorry (Very) to hear about your wife, but please bring her around ! There are a lot of big hugs to be had here and If what you are wanting to do is a viable (read) accepted idea I for one can send you a bunch of atypical cluster stuff. The kind of things that used to get you flamed on this board ,but as time goes on we are all becoming a much more cohesive bunch  yeah right!!
Nice to make your acquaintance and I hope you are for real and that you will get much cooperation from this group of sicko's. 
I love these people and I have not even had the chance yet to meet any of them in person.
Good luck.....Tim
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| « Last Edit: Jul 24th, 2006, 9:16pm by tanner » |
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I AM THE MASTER OF MY MIND, MY BODY, AND MY EMOTIONS...
it's just my head that sucks...http://www.centerforlit.com/
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kevinpix
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treat others with respect
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Re: ClusterHeads - We Need You!
« Reply #11 on: Jul 25th, 2006, 12:26pm » |
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Roses are red,
Grass is green.
My pain is less,
Than it's ever seen.
The nerves were killed,
My face is numb.
My fellow "heads,
Call me Dumb.
All I can say,
To my dear friends.
Life is better,
And the smiles never end!
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Charlotte
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Re: ClusterHeads - We Need You!
« Reply #12 on: Jul 25th, 2006, 1:36pm » |
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Is Jenrob2006 your Jen?
And welcome aboard.
Charlotte
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Charlotte
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Re: ClusterHeads - We Need You!
« Reply #14 on: Jul 25th, 2006, 1:56pm » |
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Congratulations on your marriage. I'm glad you found each other.
Charlotte
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rgasperson
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Re: ClusterHeads - We Need You!
« Reply #15 on: Jul 25th, 2006, 2:41pm » |
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Thanks so Much Charlotte. She is an amazing, extremely strong woman. I am so blessed to have her.
To everyone, I have started to put together the book. grant it, it is only 7 pages long right now, but I thought it would be good faith to let everyone see the progress of the book. my goal is to have a finished product between 150-200 pages.
http://www.roberttgasperson.com/ClusterHeads.pdf
I have written in red the items that I need to change. I have, and will be asking for your help in the red type. So take a look and let me know what you think.
Robert.
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Robert T Gasperson
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Melissa
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Re: ClusterHeads - We Need You!
« Reply #16 on: Jul 25th, 2006, 3:00pm » |
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Written at the lowest point of one of my cycles before I really got to know all of my friends here...
What's to Come...
Through the backdoor of my mind
whispers of agony fill my time,
dread is silenty approaching near
my eyes stay open, fill with tears,
apprehensive, and ill fated sorrow
waiting for another tomorrow,
no living soul seems to care
about my own personal nightmare,
how dare I dwell, or even think
how much my life can really stink,
HELL to what people will say
I dance with the a$$hole anyway...
The Devil Within
Bladed knives, razor blades,
twist and churn in pent up rage,
eyes shut tight, embracing fear,
knowing that he's standing near...
Look in the mirror, your eyes are black,
now there is no turning back...
The barrel's hollow, the metal's cold,
powder drifts up to your nose...
Take a breath and let it out,
one person knows what it's all about...
fingers shaking, knees are breaking,
muscles tense, stomach quaking...
pull the trigger, let it go,
blown into a big black hole...
I have more, but they disappeared into cyberspace somewhere... 
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| « Last Edit: Jul 25th, 2006, 3:13pm by Melissa » |
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Melissa
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Re: ClusterHeads - We Need You!
« Reply #17 on: Jul 25th, 2006, 3:12pm » |
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woops, sorry, I forgot the answers to the ?'s....
1. How would you describe the Beast that is your Cluster Headaches? As an excruciating, exquisitely unique, relentless pain that hits me up to 4 times a day and lasts for 50 min. each time.
2. Do you Remember your first Cluster Headache? What was it like and what were the reactions of those around you? I can't remember my first, I was 16 yrs old though.
3. What comforts you most during your cycle? why? THIS WEBSITE, because of the sufferers here knowing what I'm going through.
4. What would you like to say to someone who is just discovering that their Headaches are really cluster? This will not kill you, and you should not let it control your life or put any emotional value into the pain.
6. Do You have any Photography or artwork that is inspired by the pain, or the pain-free moments? See above.
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LadyLuv
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Re: ClusterHeads - We Need You!
« Reply #18 on: Jul 25th, 2006, 4:48pm » |
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First and foremost;
I would like to thank Clusterhead-Chuck for looking out for us.. That's what make me love you guys so much... always looking out for the family..
Secondly:
I would like to thank rgasperson for what you are attempting to do.
It's hard to put into words for some of us... so it's not that we don't want to comply... it's that we don't want to cry...
Peace & Blessings
Lady Luv
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sandie99
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Re: ClusterHeads - We Need You!
« Reply #19 on: Jul 26th, 2006, 5:40am » |
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Robert,
I think that your idea is wonderful.
I have posted here once a poem I wrote about Cluster family (I called it a song) and once a poem I wrote close to a hit. If you think that you can use them, do.
I have written loads of poems about ch/hits/pain/during hit. I just have plenty of notebooks, so it takes time to find them. But I promise to look up some and send your way.
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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rgasperson
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Re: ClusterHeads - We Need You!
« Reply #20 on: Jul 26th, 2006, 2:15pm » |
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Thank You Sanna. Anything you can provide will be happily accepted. I look forwatrd to reading your work.
To everyone who has responded to this call, Thank You so Much. So far I have not posted any names to the work that was provided unless it was stated in the post (I believe Mike was the only one). If you would like your name to accompany your poem or work, please let me know when you post it.
If you already posted work and you want your name to go with the work. Let me know and I will update the book.
Thank you again everyone. This project is going to be awesome.
Robert.
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Robert T Gasperson
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George_J
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Re: ClusterHeads - We Need You!1. How would you de
« Reply #21 on: Jul 26th, 2006, 2:42pm » |
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>>1. How would you describe the Beast that is your Cluster Headaches?
Prior to finding clusterheadaches.com, I named it on my own. I called it "The Black Dog", and dreaded his cyclic appearance. I might as well have been the only clusterhead in the world for better than three decades.
The "Black Dog" ruled my nights--six weeks on, six months off for better than twenty years. I was frightened to sleep.
Can someone who does not get cluster headache even imagine this? The great balm of rest for most of the world is denied us. Instead, we struggle through a chamber of horrors and cope as best we can.
>>2. Do you Remember your first Cluster Headache? What was it like and what were the reactions of those around you?
1966. I was thirteen years old. I didn't know what was happening to me, and decided that I was most likely going to die in a few minutes. Not yet having developed the coping mechanisms I've built over the years, I raged and fought against the monster. My mother, bless her, treated it as an emergency and started to take me to the hospital. I think I scared her out of her wits. Before we got to the hospital, it vanished.
>>3. What comforts you most during your cycle? why?
Solitude and darkness. It's not just that I want to be alone with it in order to cope--more than anything, I don't want anyone to see it.
>>4. What would you like to say to someone who is just discovering that their Headaches are really cluster?
Don't be afraid. You can live with this--perhaps more fully than you could live without it. I know you can. It's a random occurrence. You've done nothing to deserve it--it just is. Make yourself strong, balance your pain with joy, and choose to live as fully as you can. Each day (with or without pain) is a gift--accept it with humility and gratitude to whatever has given it to you.
Talk to the people here at the board and get to know them--they are your greatest strength.
Best regards,
George
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| « Last Edit: Jul 26th, 2006, 2:43pm by George_J » |
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Melissa
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Re: ClusterHeads - We Need You!
« Reply #22 on: Jul 26th, 2006, 2:57pm » |
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Robert, you probably want to change in the last line of my first poem "What's to come" from "not a very nice person", to "as$hole", as that is how it is written. You also may put my name, Melissa Filtz, as the author of them both.
Thanks!
mel
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| « Last Edit: Jul 26th, 2006, 11:45pm by Melissa » |
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AussieBrian
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Re: ClusterHeads - We Need You!
« Reply #23 on: Jul 26th, 2006, 11:28pm » |
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Hey rgas, you might want to consider a section on most quotable quotes from ch.com.
Margi, to a seriously distressed new supporter: "They go to 'place' we can't access, nor ever hope to understand".
LeLimey, to a newbie seeking diagnosis: "We're not doctors here, but we're expert patients".
And I thought it was Jonny but he says otherwise: "Frozen peas are my friends".
There'll be plenty of others, I'm sure.
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ClusterChuck
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Re: ClusterHeads - We Need You!
« Reply #24 on: Jul 26th, 2006, 11:59pm » |
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Robert, thank you for your responce to my questions. I am satisfied that you are above boards and legit.
AND, thank you for undertaking this project!
Unfortunately I am not bright enough to write poetry, but, one of my sons asked me, years ago, to write a description of what one of my hits was like. I wrote it out. If you want that, I would be more than happy to send it to you. (Of course, I would have to find it first! haha!)
Good luck on this worthwhile project!
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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