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(Message started by: maffumatt on Oct 21st, 2006, 8:28am)
Title: Please explain
Post by maffumatt on Oct 21st, 2006, 8:28am
To those who are new WHY it is so important for a clusterhead to meet another clusterhead........Please relate your experiences...
Title: Re: Please explain
Post by Yorky on Oct 21st, 2006, 8:39am
1.because it is not like meeting a stranger.

2.it is not like meeting a new doctor.

for the first time you will be meeting someone who KNOWS how you feel, and who KNOWS your pains.
Title: Re: Please explain
Post by LeLimey on Oct 21st, 2006, 8:43am
Its like coming home.

You'll never feel so "right" as you do with another ch'er for company.

Being hit with others around isn't so hard. They get you what you need, leave you to deal and pass you a drink when you're done. You're just YOU, not some freakshow.

You learn more about how to cope in five minutes with another ch'er than with any doctor.

You learn you can fight this, the empowerment of a get together is incredible.

You meet the most compassionate, caring, wonderful people in the whole world and not one of them will ever tell you to take two aspirin and stop eating chocolate!

You learn some FILTHY jokes  ;;D
Title: Re: Please explain
Post by BarbaraD on Oct 21st, 2006, 8:53am
It's really indescribable what happens. You bond instantly.

Back before the days of pictures on this MB, I picked Drummer out at a crowded airport (he has his back to me). It's weird, but I knew it was him and all I knew about him was he was about 6 feet tall, blue eyes and around 33 or so.

At the hotel, Kip bit me on the back of the neck and I said his name before I turned around.

A couple of years ago a few of us met in Tyler. This guy drove up on a motorcycle and I pointed to him and knew he was one I was meeting. I called him by the wrong name until he straighted me out, but I KNEW he was a clusterhead. When the others showed up we all knew them on sight.

I've met a LOT of clusterheads over the years and have NEVER had trouble talking to them or recognizing them. Like I said - it's not something you can really explain -- you have to DO IT to understand.

ONe of the neatest things I had happen was when I was going thru my worst period to date. I was talking to this guy from Texarkana on the board about his doc. Got him in to see my neuro. Well, one day someone knocked on my door and it was him - with a basket of candy. His first words were, "Can I have a hug?" I knew who he was immediately and yes, he got several hugs.

Like I said, it's just something you can't explain, but don't miss a chance to meet another Clusterhead. Once you do - then you'll know.

Hugs BD
Title: Re: Please explain
Post by Redd715 on Oct 21st, 2006, 9:59am
I have met some of the best friends I'll ever know in my life by meeting my fellow sufferers.  

I can't imagine suffering this hell alone again.  To have someone who is just an email or a phone call away is the greatest support in the world, and they'll never tell you to just suck it up and get over it.
Title: Re: Please explain
Post by ClusterChuck on Oct 21st, 2006, 10:36am
It is also a GREAT time to grope some ass while you are hugging!!!

Chuck the official groper ...
Title: Re: Please explain
Post by FramCire on Oct 21st, 2006, 10:49am

on 10/21/06 at 10:36:43, ClusterChuck wrote:
It is also a GREAT time to grope some ass while you are hugging!!!

Chuck the official groper ...


I have met a few CHers (on 2 different opccasions) and honestly I felt like I was seeing my long lost family.  The strange thing is that I am very different from most of the Chers I met but I felt at home with them from the moment I met them.  

Seriously, it just can't be explained but the first time I met a CHer, I felt normal like there was hope for me to live a normal life (thanks Sean and Beth, I mean really..... could I call chewy and Jonny "normal"... lol).

Like family, people are going to be different and personalities may clash but like any good family, I trust that when I NEED someone or something, someone here will have my back (could be chuck groping me, who knows).

I need to make Richmond because I need to meet a ton of people here who I credit for my sanity.
Title: Re: Please explain
Post by roy21302 on Oct 21st, 2006, 10:52am
Chuck
        If we ever meet I'll remember to keep my arse to the wall!!!  ;;D

Matt
       The feeling when you meet another CH' er is not easy to put into words, I think its a lot to do with just meeting some-one who shares some of the same experiences as you, some-one whos sat alone at night frightened, crying with pain, and in despair.  Who felt the elation of just being PF for a couple of days, and the crushing feeling when they are suddenly hit again.
        I have not been on this board for long, but I feel that its a wonderful place to be able to come too for a feeling of being among friends people who understand.  I wish every-one who visits this board a PF future, and hope that I may by a few word on here be able to help some of them.  (Groper included)
:) :)                                     Cheers Roy  :)
Title: Re: Please explain
Post by maffumatt on Oct 21st, 2006, 11:23am
I am not a social person, to tell the truth I don't like people. Its hard for me to feel comfortable around people. The more people around, the more uncomfortable i get. The first time I attended a convention I felt at ease with everyone there. It WAS like meeting family that I hadn't seen. I knew it was going to be a special moment for me when I walked into the lobby and there sat DonnaD. She was my first clusterhead to meet. Then Jackie and Jean sat down. I still felt at ease. Before long more and more people filled the room, and I kept waiting for that crowded feeling I get in crowds. It never came. I have never felt that at ease with a room full of strangers. Then I realized that they weren't strangers. I knew every one of them intimately.  I knew their deepest pain, as they knew mine. In my little lonely world of pain, it suddenly wasn't lonely any longer. They knew, they all knew. Then I saw another person have a hit. It made me physically sick. I hurt for that person. I knew. They knew that I knew. No words needed to be spoken. It was a life changing experience that I will never forget. Never. I wasn't alone. I wasn't crazy. I was as normal as the rest of the people there and I have never felt that "at home" before.
Title: Re: Please explain
Post by roy21302 on Oct 21st, 2006, 11:26am
I think you just about summed it all up in your last post
                                                                    Cheers Roy :)
Title: Re: Please explain
Post by pattik on Oct 21st, 2006, 11:27am
Matt, this is an excellent subject for a thread, and I'm going to bookmark it to share for acquaintances who may not "get" it. The bonding thing is probably the most evident, but in my case, spending time with other CH'ers was also the FIRST time in my life I was not only comfortable talking about it as much or as little as I wanted, but also encouraged to do so.  Conversations drifted into and out of the subject of CH as comfortably as talking about the weather, and no one judged or looked uncomfortable or rolled their eyes with impatience.
This is the kind of support that can be very difficult for one to find elsewhere, and once experienced, cannot settle for less.
   ;)  pattik
Title: Re: Please explain
Post by brewcrew on Oct 21st, 2006, 1:14pm

on 10/21/06 at 10:36:43, ClusterChuck wrote:
It is also a GREAT time to grope some ass while you are hugging!!!

Chuck the official groper ...

But it's kinda twisted to grab a family member's ass.  :o
Title: Re: Please explain
Post by Charlie on Oct 21st, 2006, 7:33pm
It's tactile.

I'm not a hand holding type but when you meet others in the flesh, it's simply more real.

Charlie
Title: Re: Please explain
Post by Mosaicwench on Oct 21st, 2006, 7:58pm
As a supporter it's a little different experience meeting other clusterheads.  

I've watched brewcrew get hit for 15 years.  Watching others get hit was a huge shock for me.  

As a supporter I felt compelled to help and yet pushed (by the constraints of polite behavior) to keep my distance because these folks didn't know me from Adam.  I also know that brew doesn't like people around when he gets hit so I just naturally stay away.

That said, the people I met at Milcon were kind and warm and welcomed me with open arms.  Since brew and his band were playing I was left to "mingle" on my own and everyone made me feel quite welcome.  I'm glad I met so many incredible people.
Title: Re: Please explain
Post by Paul98 on Oct 21st, 2006, 8:47pm
Because no matter who it is, it is like meeting a life long friend for the first time! :)

-P.
Title: Re: Please explain
Post by Linda_Howell on Oct 21st, 2006, 9:52pm


Bessides all of the above reasons...everyone I have met over the years are downright, honest-to-goodness nice, funny, intelligent, caring people.  They are a kick just to be around.

Oh and Charlie?  You may not be a hand-holding type but you sure liked it when I gave you a neck rub.  :-*
Title: Re: Please explain
Post by Redd715 on Oct 21st, 2006, 9:57pm
Oh yes folks....

Linda is very good at those neck rubs.  Got one myself.  And this womans heart is about as big as they come.  All packed into that tinnie winnie little frame.  She's one of the best there is.  Bar none.
Title: Re: Please explain
Post by georgej on Oct 21st, 2006, 11:14pm
I have yet to meet another clusterhead.  Everyone I've spoken to, without exception, echoes what you folks have said here.  It has been a profound experience just getting to know you here on the board--I expect that the first time I actually meet one of you in person will be at least as profound.

See you in Richmond.  I'm looking forward to it.

Best wishes,

George
Title: Re: Please explain
Post by Donna_D. on Oct 21st, 2006, 11:30pm

on 10/21/06 at 11:23:14, maffumatt wrote:
The first time I attended a convention I felt at ease with everyone there. It WAS like meeting family that I hadn't seen. I knew it was going to be a special moment for me when I walked into the lobby and there sat DonnaD. She was my first clusterhead to meet.



Funny thing was, I KNEW exactly who he was...he and Mary were walking down the stairs...and it was really wierd....I just KNEW he was a CH'er and I knew it was Matt...even called him by name...course...it could be that Atlanta connection we have :)

I would not be the person I am today without the love, caring and support of my fellow CH'ers and supporters I have met here and through OUCH.  


And THAT is saying A LOT!



Love you all,

DD
Title: Re: Please explain
Post by Jimi on Oct 22nd, 2006, 12:02am
Matt summed it up very nicely for me. Great post Matt.
Title: Re: Please explain
Post by Jonny on Oct 22nd, 2006, 2:58pm

on 10/21/06 at 10:36:43, ClusterChuck wrote:
It is also a GREAT time to grope some ass while you are hugging!!!


Screw that, I banged the first clusterhead I met in person.....LMAO! ;;D

And no, it was not Chewy.....LOL  [smiley=laugh.gif]
Title: Re: Please explain
Post by Margi on Oct 22nd, 2006, 5:04pm

on 10/21/06 at 08:28:59, maffumatt wrote:
To those who are new WHY it is so important for a clusterhead to meet another clusterhead........Please relate your experiences...


It's almost indescribable, but it truly is like meeting someone from your home planet.  The first clusterhead we met was DJ and my Mike is not a huggy guy at all but...there's just something about a clusterhead.  DJ & Mike hugged right off the bat.  Having DJ stay with us was like having a long lost brother come home. I can still see DJ cuddled up on our couch watching the tube. We didn't have to say anything, everyone was just comfy with each other.  It wasn't like having a visitor in the house at all - it's just...family.  Next for us was the Vancouver convention.  Every single person we met, same damn thing...instant recognition and familial bond.  Riccardo, who's English isn't his first language - it didn't matter.  I knew Linda right off the bat without being introduced.  I knew Elaine had checked in at reception without being called to come down there.  Bonnie & Warren, I'm sure we knew them in another life - or maybe we WERE them in another life.  Monique & Greg - instant best friends forever.  We often don't have to say anything and we can always finish each other's sentences.  Bonnie was the first supporter I ever talked to and that first phone call was 2 hours, as if we'd known each other all our lives.

Clusterfolk....well, they just KNOW, ya know?  Walls can come down around others who walk your same path.  It's like sinking into a warm bath.  It's that "ahhhh" feeling.  FINALLY, someone who understands!
Title: Re: Please explain
Post by Turts on Oct 22nd, 2006, 6:26pm
remarkably I work 2 other people who have been diagnosed with CH.

i have never been to a convention (yet!!) but can try to imagine what the companionship would be like. Id imagine CHers would give each other that "knowing look' that says it all.

I feel your pain, im here for you kinda stuff, but in the mean time lets party


Turts  
Title: Re: Please explain
Post by TxBasslady on Oct 23rd, 2006, 1:12am
Meeting another Clusterhead is the greatest experience I've ever known.

My first was in New Orleans, 2003.   I learned alot that Saturday...I saw what CH is like from the other side.  I saw how CH really affects our supporter's.

Jean
Title: Re: Please explain
Post by purpleydog on Oct 23rd, 2006, 3:17am

on 07/19/05 at 20:21:17, purpleydog wrote:
I've been trying to pin down my thoughts and feelings since I left Dallas. My flight home was spent on my laptop, looking at pics, and thinking of s and Ramon, Billy J, Bec, Kirk, and most of all, Svenn. Next yeayou all. This was my first convention. I was in Davenport in January, but this was so much bigger.

The people I met and laughed with, cried with, and drank with were the best! I keep in touch with many of you via messenger, but meeting you in person was such a treat! The first person I saw when I arrived at the hotel was Frank. I was welcomed with the warmest hug and a big smile. DD came along soon after, then Bill.

Donna, you did an amazing job putting this together. It was a large task, and everything was perfect.  :)

Frank, thank you for all the help with the logistics, we couldn't have done it as well without you.

Bill, thanks for the guidance. And all the shit you TRIED to give me. ;)  YOU are a worthy opponent.

Jean, it was great to finally see you, you have such a sweet heart. And Jackie, it was good to see you again, I'm only sorry that Blake couldn't make it. Linda, it was a pleasure, and we'll have to hustle it next year, ok?

I picked up some guy at the airport... Who the fuck was it? Oh, CHUCK!! Chuck, you are one of a kind, and I love you, even if you did grab my ass.  :) I missed saying goodbye to you.  Steph, you are wise beyond your years. Stay sweet.

Pepper, you saw me first, and what a hug. Nani too, you are very special. And funny! Bethany, you are sweet. Maria, you are beautiful. Karen, you are so cool. I'm so glad you made it.

Eric, I wish we would've had more time... but the time we did have was the best. You are the best. Rori, you did an excellent job on the game show   [smiley=laugh.gif]  and the auction. Without you, the auction wouldn't have been nearly as successful. Thank you for everything you did.

Matt, I'm so glad you came. It meant a lot to me that you did, and it was so good to meet you and Mary. :)

Helen, it was a pleasure meeting you and David. I had tears when we hugged goodbye. I sincerely hope you can make it next year.

I got to talk to Roxy for about 5 minutes, and she has the greatest smile. She's funny and a lot of fun.   ;;D

Katy, and Larry, I'm so glad you came. It was good to meet you.   Redneck, I'm without words. You are very special to me, and Carolyn is just too cool. Opus, my penguin friend, I'm glad we met. We didn't get a chance to talk tech, but I know you got yer fix with Redneck and Matt. ;)

Charlie,  it was good to see you again. Jimi and Ruthie are sweet. Well, Ruthie is.  Jimi is a great guy.

DJ, without you, this wouldn't be possible. Thank you for CH.com, and all the work you do for both sites. It was a pleasure. ( I thought you were taller... ;)..like 10 feet tall)

Pegg, sis,  thank you for the support, and understanding. DD, my sister, I love you so much.
I picked up Jonny from the airport, and saw him intermittently after that. What a sweet guy (shhh, don't tell him I said that!).

I know I'm leaving out some folks, but just let me say that this was the best thing I've ever done. It was great to see you all. I've never felt such a level of acceptance, and friendship. It's like I've know you all for years.


Chris



Meeting another clusterhead is like going home. It is instant acceptance, no explanations, total support, and it's like knowing them for years. There is also a level of protectiveness for each other.

This is the post I made after the Dallas convention. I still feel the same way. Hugs all around...
Title: Re: Please explain
Post by Carl_D on Oct 23rd, 2006, 3:58am
The analogy I came up with in Nashville was this:

Meeting other clusterheads is like war veterans. A war veteran can tell stories about war all day long, but no one can fathom it who has never been there. However, when war veterans get together, no words need to be said. You can just look in each others eyes knowing 'you've seen it too' and the bond is instant.

Just my thought on it,
Carl D
Title: Re: Please explain
Post by sailpappy on Oct 23rd, 2006, 8:08am
;;D ;;D Above all else, Meeting another Clusterhead finally answers the question you have carried with you since the onset of CH Syndrome---""Is there really someone besides me with this condition!"""
    Regretably and beautifully at the same time, there are---[[{Lots and Lots!!]]}  and you do feel like you already know each other on some level!!   Pappy
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Title: Re: Please explain
Post by BarbaraD on Oct 23rd, 2006, 9:30am

on 10/21/06 at 10:36:43, ClusterChuck wrote:
It is also a GREAT time to grope some ass while you are hugging!!!

Chuck the official groper ...



And I might add -- you do it VERY well my dear....

Hugs BD


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