Posted by Carl D (208.4.19.38) on April 13, 2000 at 08:40:50:
This message is in response to Jim Pacheco, and anyone else who feels the same as him about CH.COM.
I am having a hard time with your post. I must say that you have broken MY Heart (not that I am important to you, as you didn't even bother to get to know me - that might require human interaction.)
I believe Todd and Elaine said basically the same thing I wanted to : I noticed just below your post people talking about treatments, effects of CH on thier loved ones and family, and - oh yes, Riccardo gave me a picture orf a guitar and a scale as a gift (which is more than my own family would give) for my B-Day. That is more than I have got in the last few years (he is a sweet guy who sends truckloads of kisses to the hurting.) But I still haven't found a post from you where you asked for help because you were back in cycle and everyone ignored you. In fact, I just noticed another newbie posted and three people greeted him instantly. Hmmmm.
You say you found CH.Com after dealing with this for years alone - You found that not only were you not alone, but others knew of treatments you did not. You also said you found something new that effectively sent the CH's running - information you found here. Then you say "YOU WENT AWAY!!!" Is this a payback to those who helped you? I would think that - like many who have gone out of cycle and stayed, you would want to stick around for the new people who find this site everyday to offer advice, support and emotional healing - as you yourself claim to have received. It is like you find a girl who helps you, you get better, then you leave her! When you are having a hard time again - you come back for help and get pissed off because she wears different makeup or has a new hairdo. You never cared about her or anything about her - inyour eyes she was just a cheap whore to throw away.
Unfortunatly, many see Ch.Com as a cheap whore that they will 'throw away' when they are in remission and then get offended when the site evolves without them. You, my friend - have not shown me a heart which can break, only heartlessness.
What gives you the right to come here and judge this site, calling it an "AOL chatroom". It is far from that. What has happened, in your absence, is that we discussed all we can about new treatments and, unfortunatly, lately there is nothing new under the CH sun. So what do we do? Just say "ok, it was good, but we have nothing more to say - lets all go away now." Unlikely. Especially when most of us thought we really were alone in our sufferings - only to find thousands worldwide suffer with this same dreaded affliction. Now, in the last year, we have got to know one another, each others likes and dislikes (and I am coming to find more and more people were built without emotions), and what makes each one of us tick. We have shown to each other that not only do we suffer from CH, we have a life too. For some of us, it is a life we have been robbed from due to this illness. In that, we find comfort and support from those who understand us best - the fellow clusterhead!
Since you went away, we have grown together. We have literally become a family. We can laugh, cry, joke around, and offer each other a leg to stand on when we get too weak. In the case of myself, I have been unable to get any help of any kind from our uncaring government or state. I have not seen a doctor since September of last year. I have not had a new treatment to work in a long, long time. Because of this, someone on the board is taking donations for me and is raising money to help me get a new doctor, get medicine, and get some relief. Why? Because they have got to know me as a human being, and care about another persons suffering. This is more than people on this side of the box have done. Most people cannot sympathize with me, as they have never experienced a CH. They do not kbnow what it is like to have your life stripped from you.
Another question I have is: When you came back to CH.Com, is the message board the first place you came to, or did you happen to check out all of the new links? Did you take part in DocGregs study? Did you check out O.U.C.H., or were you just trying to find a new 'quick fix' so you could be on your merry way? Somehow I think the latter is the case and, in actuality, you are not mad that the board evolved and grew and did not remain idle or fetal; in truth, you expected to come here and find a bright new treatment that works wonders or a miracle cure - which we just don't have - and when you didn't find what you wanted, you got pissed and took it out on us.
You, have broken our hearts!!!!!!!
As I am suffering immensly, I wish to find comfort from those who also suffer, whether it be by thier own personal experience, thier wit and humor, thier advice, or them just being a listening ear and being a friend. I hope that I can somehow offer comfort or advice to someone else; Silver and gold have I none, but what I do have - I share of freely. I will give as much advice as I can. I will share humorous things with others who could probably use a smile.
From the tone of your letter, I take it you never smile.
My point is this: You could have stayed and helped so many people. You could have stayed and grown and evolved with the board and the wonderful people on it. Instead you used the board, walked away, and then decided to judge us based on what you 'think' the board should be. And what should it be? A bunch of non-feeling, non-caring zombies who just keep parroting the same things over and over? Hva eyou even gone to Bob P's homepage to see what other sufferers look like? You might be suprised to find that they too have flesh and bone, blood and eyes, and are feeling, breathing human beings, and not machines. I believe what you are looking for is a machine, and nhot a human being. Sorry - the machine could only operate so long without human interaction.
As for those who have whined (yes, whined) "I see one post about a doggie with ten responses, and then another person who needs help with only four responses." Yes, and you know what? I have noticed that these self-appointed judges did not leave one of those four posts either. Not only does that make you guilty too, but a flaming hypocrite!!!!!!!!!!!!!!!!!!
I have spoken my peace. This here is my family. Don't mess with the family - got it? There is strength in numbers and our numbers have names faces and feelings too. When you hurt one, you hurt us all. If you wish to find a caring, understanding friend, there are plenty here.
Or perhaps you will choose to suffer alone, in silence, where no one understands your affliction or, for that matter, probably cares. You know what, that is your perrogative and no one is stopping you. You may forgotten what it is like to suffer alone. I guess this is an evidence that the saying is true: Those who do not remember the past are condemned to repeat it.
I, on the other hand, will take this lying down no longer. I will scream from my suffering. I will scream loud enough that the whole world will hear me, until everyone knows what Ch is all about. Until doctors finally figure out what they are dealing with (one must know his enemy before he can conquer it) and develope a caring attitude for CH sufferers.
After reading this, you probably hate my guts. Thats ok. I am telling the truth and I have learned from experience - the truth has never been popular.
This post is not meant to gather new friends, instead, to enlighten you in how wrong you are to come here and judge what you obviously know nothing about. Something else I have learned too - self appointed judges judge - more than they have earned.
I am not mad at you - rather I am disappointed. I do hope you choose to stay, get to know some of these wonderful people, and also help to counsel with new sufferers who find this site every day. If you do stay, then welcome. If you do not, then please hold your tongue as you exit the board. If you have ever experienced a true cluster attack, you know we have enough to deal with than to be judged all over again.
Peace to you,
Carl D
P.S. - Have I mentioned that I would be dead if it were not for DJ, CH.COM, and the people who have reached out to me emotionally? Yes, in '94 I attempted suicide and in the last year or so, have contemplated it over and over. Then I look at people like Elaine who, not only have overcome CH but, survived a stroke and beat cancer twice!!! Now if there is anyone in the world you can learn a lesson or two from - it is someone like Elaine. I suggest you stay and get to know her. Get to know her strength. It may give you a whole new outlook on suffering and coping.
FREEk