Posted by Margi (161.184.81.207) on June 07, 2001 at 11:05:03:
In Reply to: My final posting and visit to this site......... posted by Chamb on June 06, 2001 at 20:12:09:
Chamb,
I have stayed out of this until now, because I really hate fighting.
You're right, newcomers are sometimes treated standoffishly here. But, if those newcomers arrive with honesty and integrity, they are readily welcomed into clan. But there ARE conditions for acceptance here. It's a complex group, there's no doubt of that, but the best analogy I can come up with is this: you arrived, knocking at the door of our ongoing and perpetual family reunion. Yes, you're a relative because you have clusters. But you're a relative that no one's ever met before. You've come into the room where the discussion is, for the most part, about a disease that we all either suffer or support. THAT's what we want to talk about. YOU don't want to talk about clusters. You want to change the subject and ask us to support your cause (albeit worthy, no question there). But Chamb, for so long, this family has been misdiagnosed, mistreated, misunderstood and now finally, we have found commonality and strength in keeping our discussion focussed on finding a cure for cluster headaches, that we really don't have the time or the desire to try to solve other problems right now. Sometimes we get very possessive of our oasis that we have created here. Can't you understand that?
When one of our family disagreed with you in a style that is unique to Jonny, (which is one of the things that we all love about him, by the way) you come unglued. Same with Charlie - unique style, but again, he's our Charlie.
Don't you have family, Chamb? Aren't some of them unique in their characteristics? If one of them becomes upset because of something someone said and they argued with that person, wouldn't YOU support them? Simply because they're family? That's the way we are here. We support our family, unconditionally.
You can be part of this family, but you have to at least try to fit in. Just by saying you have clusters and then trying to solicit us for help for a totally unrelated cause isn't trying to fit it. It's manipulative and pushy. It's like you came to a room full of raisins and tried to convince them to worry about some M & M's. Ain't gonna happen, Chamb. You're welcome to talk about what it's like to be a raisin though - no one has ever disputed that.
But if you'd rather talk about M & M's, I think they're meeting just down the hall...