Posted by Margi (161.184.81.207) on January 23, 2001 at 11:00:08:
I may lose a lot of friends over this post, but here goes...
I think I made my first post to ch.com in late October, 1997. So I've been here long enough to really watch how this group has evolved.
Back in the early days, newcomers were welcomed with relatively open arms. Yes, there was the initial short-arm inspection and proverbial sniffing over to determine if the newbie really qualified as a clusterhead and not *God forbid* a migrainer, but once that was established, newbies were accepted as family.
I arrived here in my desperate search to find relief for my husband. What caught my eye was a supporter's post to the front page as she described what her husband was going through. I had never heard anyone describe my life so succinctly. This woman nailed it. She was living my life. Anyways, long story shortened, I had found a new home and found the relief we had been looking for. I was welcomed - no questions asked. Mike and I are a success story of ch.com. We're two of the lucky ones. Mike is enjoying his longest remission EVER because of this place. First, because of Doc Jerry's water treatment, then because of Flash's shroom treatment.
So what's my point?
My point is that over our years here, Mike and I have come to know personally some of the folks who post here regularly. It's a fall out of spending so much time together. You do tend to get involved behind the scenes and learn about people's private lives whether you set out to do that or not. We have formed some great friendships here. And we have met some people with whom we would rather not continue a personal relationship - a certain hydrated canine comes to mind. That's ok, though. That's life.
But the trend I see developing here at ch.com is one that scares me. No longer are newbies accepted at face value. Even some of the "oldtimers" are now being questioned because their private lives (did you hear me? PRIVATE lives) are being dissected and criticized.
We have had a mother come to us desperately seeking relief for her TWO YEAR OLD. And what was our initial response? No way. A 2 yr old can't have clusters. This woman is a loon. Is that conducive to support?
We've had young Luke come here to talk about his tolerance of a drug. Yes, he became rude and bit back and stirred things up here, but I wonder if he would have, if he hadn't been criticized for talking about his grade point average and judged immediately to be a rude pup. OK, so he gave us more information than we needed but in the words of our very wise Pinky "Who cares, guys?"
Now we're questioning if it's feasible that twins could actually have clusters. Um...ya THINK? I would think that twins would be the PRIME sibling relationship to develop the same problem. Thus the term "identical"? And again, what business is it of ours to judge what goes on in people PRIVATE lives (there's that word again). Does it hurt us that much to lend a little non-cluster-related support now and then and just listen and be a friend? The way people are being treated here, it's like they are inconveniencing us by asking for our friendship and being judged to be a demon or something!
Oh, wait, who here today has ever talked to my husband, Mike? How do you know there really IS a Mike, people? How do you know that I'm not some 500 pound male nut job who gets his jollies out of concocting a story about some poor guy who beats his head in the wall every six months and disrupts the quality of my life. It could all be bogus. But it's not. Uh-oh....did I spell "bogus" the way you do? Hey!! Wait a minute!! I must be YOU then!!
Come on clusterfolks. Yes, we deal with the mystery of the internet here. But people come here out of the same desparation we have all experienced. They come to us in pain. Who are we to judge what goes on behind the scenes in their PRIVATE lives?
Last example, I promise. I can't shake how that guy, Derek was it? came to us a while back. He's back in cycle. His initial post was fine. But we chose to chastize him because he had the gall to leave when he was in remission. I think of ch.com as a clinic - a hospice, whatever you want to call it. Some of the people stay here because they like to. Others get well and go back to their regular lives. But they feel comfortable - or THOUGHT they felt comfortable - to come back when they needed us again. Is that a sin? There are enough of us here to keep the doors open and the lights on. Not everyone has to take up permanent residency. Some of us do, and that's cool too. But the point is, where is Derek now? Did we chase him away when he needed us most?
So to Shelly, Luke, August, Derek and the countless others who have been slapped in the face when you came to us for help, I apologize.
And I repose my original question...."If a man speaks in the forest and there's no one around to listen, is he still wrong?" K, that wasn't my original question, I just like to say that.
OK, I'm done now. (Oh man, someone else said that once. Jeez, I could be anyone.)
WWW & Shrooms, too
Margi
p.s. join OUCH and try the 'walk a mile in their shoes' deal before you bite, ok?