Open Letter To Trouble

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Posted by Carl D ( on April 07, 2000 at 14:41:27:

I am having a difficult time understanding you. So far, I have read many posts from you where you complain about others actions on this board. Many people have tried to explain themselves and/or things to you, yet you seem to bite back in hostility. Why? From what I've read, you already don't like me. Thats fine. You have to decide for you and you alone who you do and do not like. I can live with that. Since I came to this board a year ago, I have met many people who do not like me. The funny thing is, I am one of the friendliest, easiest to get along with people on the planet. Through this box, however - I have been misinterpreted many a time. I have even had my life threatened. But you know what? I have met many people here who are genuinely concerned about one another and, who give of themselves freely, without having to be asked.

I did not ask Elaine to take up a collection to help me, she started this all on her own. Why? Because she knows the pain of CH and knows what it is to suffer. With that knowledge, she wants to help anyone she can. There are many people like her here. Some people have taken great risk to help me here. Some have even sent meds through the mail. While it may be argued whether they were right or wrong, they were pure in thier motives; to help someone suffering.
Gathering from what I have read of others dealings with CH, I will not say I have them worse or not as as bad as so and so, But I will say mine is a rather unique case and, I do not deal with pain very well. Having been chronic the last two years, I have been through every avenue in hell. After finding this board and realizing others too share in the same pain that I do, whether they have had the same circumstances or not - they can relate. You will never know how it moved me to meet so many people all stricken with the same horrible affliction.
I began posting here and, let out some emotions that have been bottling up for years. Some called me a whiner, some called me an attention seeker, some just called me friend. Some did not judge me until they had spoken to me personally and could better get acquainted with the type of person I am. I am a musician, a comic, generally a happy go lucky type of person. After having my whole life stripped from me and losing things that were dear to me, and having to put my music career on hold - possibly forever - I have turned to one talent no one can take away from me - writing.
I guess with the ability, I express myself alot more deeply than others through writing. I say what others are thinking. I feel what others are feeling. Not only have I found people who understand my affliction and its affect on my life, I found people who understand me.
I didn't understand some of them overnight, but gradually I have got to know them and better understand them. When we post here - we are not always at our best. Sometimes we leave a post at the lowest point of our life. Sometimes we say things we can never take back. It is not to hurt anyone directly - but to unload an emotion that, if left to grow in our soul, can blossom into our own destruction.

Do you realize that CHeads are very suseptible to suicidal Tendencies? Do you realize that some of us can bottle things up and, like a balloon, will eventually pop under enough pressure? Do you think it is wrong to speak of suicide? Should it be talked out - or just dealt with in silence until a person can finally handle no more on thier own and commit the act? No one can say this does not happen, as we have experienced the loss firsthand.
Yes, I have joked about suicide, but NEVER encouraged anyone to do it or made fun of anyone for attempting/completing it. Yes, I have been to the point of eanting to end my life - but have realized a long time ago that it is not my life I want to end - rather, the suffering. So as I suffer on a daily basis, experience new levels of sleep deprivation and disappointment with the hand I have been dealt and expected to play, I am comforted knowing that I can come here and, those who are my friends and have a heart, are willing to listen to my ramblings and ravings. I thank God for them. Without them - I probably would have lost it by now and ended this mess. I have been attacked by some who have humiliated me thoroughly on this board, and then apologized by email. This was unacceptable to me. Im my eyes, if you bash someone publicly, you should have the decency to apologize and admit you are wrong publicly. Anything else is unacceptable. As a result, I do not respond to that persons posts or, that perons responses to me.
If I decide what is poison and will do me harm, then I am responsible for my actions with it.

What am I saying with all of this? That for a true Cluster sufferer, this MB is a refuge from the misunderstanding friends and family, the cold and callous doctors and healthcare system, and the unforgiving world at large. I can come here and be with people who understand and are willing to lend an ear or a hand. I notice you are saying you want to help others, but have remained silent when Bob P asked you to contribute to my medical fund.

And Hub. Apparently you have not been here very long. Hub and Bob P are always teasing each other. If it was not welcomed by one another, then it would fall into another category - which is called fighting. The teasing and goofy comments are kind of a breathe of fresh air on this board. Like with our classroom and Ms Holloman. We had fun with that. For some of us, we almost forget what it means to have fun, due to the fact we suffer so much. They say laughter is the best medicine,and if you were in on the humor, you might have overdosed a few times as I have.
But something else is going on here....

I have the feeling you have maybe been abused - maybe emotionally. It's ok. I was picked on most of my adolescent life and emotionally abused by my father. As a result, now if I see a big kid picking on a littler kid, something inside of me explodes and I go stand up for them. I do not like to see anyone belittled or tortured. It infuriates me!!! As for Bob P, Hub, Drummer and Jack - I fondly refer to them as the dream team. When things get too serious, though we share many differing views on life, I can always appreciate thier humor and insight on things. Sometimes when things overwhelm us, the best thing to do is to just stand back and laugh. The only thing I have not been able to laugh at is my cluster pain.

As for language, I am offended that people are so easily offended. I mean think about it, someone might be offended by a word deemed a curse word, yet they will tear someone down so quickly while not cussing. To me, that is ul;timately worse than a curse word. I would respect you more if you practiced what you preach and not just avoid curse words, but any 'sanitized' words that can destroy someone else. The tongue wields much power, and some have just learned the art of killing without shedding blood. For anyone who claims to be a Christian and is guilty of this, they can either own up to it, or wear the banner of hypocrite proudly before God - who will ultimately judge them.

I guess what has stirred me up is the fact that you have come accusing and pointing fingers when, you are the one who is ultimately starting the trouble. No one has had a problem lately, and because of this - someone had to create a problem, especially if it was not already there. Then here comes Trouble, making something out of what it isn't. And as people try to calmly explain to you, you attack them. Yes, you are Trouble, aren't you.

As for those who do not post on this board, I don't know. That is thier perogative. They have chosen thier silence - but have done it in silence. So be it.

One thing is for sure; If I do not like a movie, I will not go to the theatre to see it all of the time. Why would I? To torture myself, or to make others in the theatre miserable with my view on the film? If you don;t like us, then don't come here. But if you do come here - don't judge us.

As for self appointed judges judging; I have a great deal of faith in God, and believe he will ultimately judge us all. I believe it will be just like His word says too. God looks at the heart of a man, not the outside. However, we cannot see another persons heart, so we judge them but what we do see - the outside. The Bible says that with whatever measure we judge someone, God will judge us just as harshly by the same measure. What does this mean? Well, with the same tenacity we judge others from without, with that same intensity God will judge from within. And no matter how dirty a cup is on the outside, the inside is the part that counts - and inside we are all dirt. So, how will you be judged?

Carl D

P.S. = if you don;t like the board or the people on it, then don't go away mad, just go away. Apparently you have missed what the board and O.U.C.H. is all about. The fact that they are trying to help me - a person who cannot afford meds or a doctor, is proof that they say what they mean, and that ouch is there to help sufferers, supporters, those who need help, and to try and educate the unknowing public. No one is forced to join, and if anyone wants to join but cannot afford the membership fee, there ore than one person here willing to pay a fellow sufferers fee.

This is what I am saying: We are here for each other. We are here for the new kids on the block who just found us and need someone they can open up to and vent to without being ridiculed. So far, some of the people not posting are the ones who ridicule others for what they are feeling. So it is good they do not post.

To anyone opposing this website - you either do not have clusters, or did not play with others well growing up.

I realize this letter has been long, but how do you respond to someone who has already been treated with kindness and has spat venom in return?

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