my response to your responses

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Posted by pinksharkmark ( on May 23, 2000 at 14:02:12:

In Reply to: Important message to all posters posted by pinksharkmark on May 23, 2000 at 02:31:43:

Some thoughtful and well-reasoned responses to my post. I said that there are others who can express themselves better than I can, and the responses prove my point. Let me try again.

To begin, I think we all agree that this site is first, foremost, and forever, a site for clusterheads. If any non-CHer gets anything out of this site, then it is an accidental bonus. If I gave the impression that I felt we should modify our behavior ONLY on the off-chance that some non-CHer (I don't believe I ever used the term "professional", did I?) might be offended, then please forgive me. I didn't mean to.

I will, however, continue to promote this site to anyone who shows an interest in this disease and what it does to its victims. If some journalist who is stumped for an idea for her next project writes a killer article about us and manages to get published in a "name" magazine, or gets a spot produced on a major TV show, how can it hurt? You guys do have a valid point though: any journalist who gets offended by our reactions to the beast is unlikely to do her subject justice anyway. I hadn't looked at it that way before.

I also think that the more neurologists who check out this site, the better, even if they never bother to post to the message board. I have read countless posts here complaining about the lack of understanding and compassion exhibited by their doctors. Even a stone would weep after reading some of the posts I've found here. These people do go to conventions and talk to each other, so word of this site may spread over time, and more and more docs may get clued in. At the very least, some of them may be a bit more generous with their prescriptions!

After a more careful review of some of the threads that I initially thought of as "flames", I realized that in many cases it is just a group of friends who know and understand each other well indulging in some merciless ribbing. A first-time reader not versed in the history and group dynamic might miss the exaggeration and sarcasm evident in these posts. Without the cues of tone of voice and body language, written teasing can be easy to misinterpret, as I obviously did. I should have known that a group of people who suffer from the most debilitating pain known to humankind would never deliberately add to the suffering of their brethren (and cistern). (Smacks self on the wrist for being so dumb)

As for my suggestions regarding off-line e-mail groups, I didn't mean to imply that such avenues are a replacement for this board - far from it! Think of them as a supplement, not a replacement. Anyone who has the resources to access this board also has the resources to access such groups.

Anyway.... it seems some agree with some of my points, some agree with none of my points, and apparently at some point in time, ALL of my points have been brought up by others. Sigh... there's truly nothing new under the sun, is there?

It is my nature to try to improve things when I can, a character flaw that has caused me endless grief in the past, but one I can't seem to shake. As has also been pointed out to me countless times in the past, my opinion of "improvement" doesn't necessarily relate to everyone else's.

Thanks for the info on Barbara D. I'm happy to hear she is still here. Thanks for the reasoned responses to my comments. Thanks for not roughing me up worse than this. Thanks for being here.


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