Posted by Simon (62.6.1.211) on August 07, 1999 at 22:17:05:
Dear All,
Just a few thoughts as I haven’t posted for some considerable time.
I’ve just checked back, and discovered that I posted the 55th message on the board back
six days after it started, so I count as something of a veteran. We’re now at nearly 20,000.
I’ve visited most days, so have seen things develop. DJ had a brilliant idea, and it’s really
made a difference to a lot of lives, and, I’m convinced, saved a few into the bargain,
possibly my own included.
I’ve been chronic for nearly four years, but manage to survive with ups and downs using
Verapamil and Imigran (Imitrex) injections. Nothing else seems to have had any impact,
and I’ll go with what works. Two a day is usual, five (like yesterday-ouch) the worst.
I’ve been trying to work out what’s been going on lately, and have found myself very
puzzled. I like the humour, that’s almost the most important thing, to know that we can
help each other laugh, and to keep a sense of perspective through that is vital. There is
still a lot of useful information coming through as well. (It was incredible to watch the
news of Peter Goadsby’s research come through so quickly. The power of this internet is
extraordinary.)
However, there has been so little that I felt I could respond to in recent weeks. Firstly the
sheer volume of posts has got out of hand, and I’m glad this has been addressed - one
spends so much time reading the posts that finding the time to add anything gets difficult.
Second, so many things didn’t need addressing, and if I had I would have just contributed
more to the vitriol that was flowing, to no great help to anyone. Third, I have begun to
feel left out.
Some of that is undoubtedly my fault, so mea culpa. However, I think I should make
some points and see if anyone has any reactions.
The most important thing is how we look to newcomers. We’ve all been there at some
point, and hopefully we want to make the place as accessible as we can to all those who
are finding us afresh. What do they see? Several of the recent posts have been from
newcomers, so they’re not all put off, but I know I wouldn’t return (at least to the
message board) if I’d arrived in one of periodic outbursts of loathing that we have seen of
late.
Mention has been made of cliques. A difficult one, as it’s inevitable that at times there
are going to be interchanges on a topic, but looked at from a newcomer’s perspective it
can be difficult to break in. That is a fact, but the moment someone says it, they are
villified because people don’t take the time to step back and look. It doesn’t mean that
anyone is intentionally excluding anyone else, but was intended as a cri de couer to make
us think about what we say and the way we say it. Yet again, however, people leap in
because they feel offended.
There have been attacks on peoples lifestyles, whether clean-living non-drug ones, or
those that take medicines because they can’t survive without them, or homosexuality, or
smoking, or the fact that some of us quite simply get to the end of our tether and need to
scream occasionally. Why poor old Carl D. gets the flak he does never ceases to amaze
me - he surely is one step along the line from where most of us are, and we ought not to
be slagging him off. I for one know that it wouldn’t take a whole lot of things to be there
myself.
We all have our pet hates, and it’s up to us to think what might annoy others. (I
personally find it very difficult to cope with someone saying that Jesus loves them the
sentence after they report having had a 10 on Kip’s scale. I wouldn’t attack that, but ask
them to think of the effect on those who don’t share their views).
Another thing we have to remember is that this is the World Wide Web, and to make our
points accordingly. Clearly it’s going to be US based in the main, but how do things look
from elsewhere? [I remember on the 4th July seeing some weird and wacky stuff about
Independence Day which could almost have been construed as offensive to UK ears].
Someone asked recently where several of the characters from over here in England have
gone, and they could be in remission, but I suspect there is a cultural thing in action as
well. The atmosphere on the board is becoming very heart on sleeve, which isn’t the way
things are done here. (Before you reply - remember that’s an observation, not a criticism).
If that applies to an English perspective, how much moreso to those out of the Anglo-
Saxon tradition completely - and they need our help as well.
So, where are we at?
My suggestions, not by any means all original, are that before posting we:
1. Consider whether the point can be better made by an individual e-mail.
2. Is the question we’re asking answered elsewhere?
3. Type any messages off-line, and read them before posting thinking about what the
reader might think. Does it exclude anyone? Are there abbreviations that might make no
sense? Do the drug names have universal application? Am I just replying because I’ve
seen a buzz word that I don’t like? Will I need to apologise tomorrow for something I’ve
said today? Have I remembered basic netiquette? Is there a reason why I feel I can’t
include my e-mail address, and, moreover, a reason that others understand? Would a
visiting researcher think positively about it, and be persuaded to help? Is my message
intelligible?
4. Am I making an assumption about the way others feel based on my own prejudices,
beliefs or politics?
That said, let’s applaud the things that are really good. It was extremely impressive to see
DJ’s own post about the meeting he had (Aug 7th), and being on the other side of the
fence. I’ve just re-read it and it as clear and expressive as anything I’ve seen here. A
newcomer or an old-timer would see things he recognised, and I suspect be as moved as
is possible by text on a page. Not all posts are going to be like that, but do ours detract
from, or swamp, those that are?
Forgive the length, but I always get long-winded at 2am! This came out much more
censorious that I intended, but I want to feel at home here, and able to put in my two
pennyworth when it might be helpful.
All the best,
Simon