Posted by Dave Emond (152.163.204.52) on August 02, 2001 at 13:56:40:
Hi Paco,
First let me say I'm completely behind you in your concern that all CH victims join OUCH. And, not just join, but become involved. That is not where I have a problem with your rant below. Please don't take this in any way, shape or form as disrespect towards you, I only feel that some comments made should be thought over again. I'll quote you:
"Okay--I'm gonna piss off a bunch of you: Stop whinning about clusters and start doing something about them. Most of us have been to ER's, beaten our heads against the walls, taken every goddam substance that any idiot recommended, fucked up our livers, lost our jobs, lost our self respect, lost our spouses, lost everything--and still we go on sobbing about HMO's, SSI, neuros, ER's, our families who don't understand, our lost careers, our lost ambitions, our lost self-respect, our lost lives. This emotional gathering of desperate peeps on this MB, as comforting as the heartfelt messages have become, is not the answer to our dilemma. Get with the fucking program."
I think it only fair to remind you that the horrible list you mention above is exactly why this board is here. This is CH.com ... not OUCH. "This emotional gathering of desperate peeps..." IS what this message board IS all about. The "heartfelt messages" IS what this board is all about. The "whinning" about all the effects clusters causes on our lives IS what the site is about. OUCH is a great organization, but it is not ready to handle the daily comforting of the so called "whinning" victims. I even feel "whinning" is an unfair term. Suffering is more approriate. If one comes to this message board seeking comfort or compassion, do you send them straight to OUCH? What are we going to do with them? Nothing, we are not set up for this type of compassion. I say let people voice their concerns, ideas, sorrows, losses, etc. They need time to understand what is happening in their lives.
"Get with the fucking program" was out of line. There are two different sites, this one happens to be for the list of things you mentioned above. After people have learned about their disorder, that they are not alone and have learned some coping skills, then they will find OUCH and join, and hopefully participate on a committee.
If everyone posted according to "the program", we might as well take out every joke, every inspirational message, and all the casual conversation and stick to just the facts.
I for one would like to see this site stay as it is, and the OUCH site continue to grow.
Peace,
Dave