[Thelma]

KD Having come here from a mental health site you would find it hard to understand what exactly Braintalk was in the lives of many there.

Of course there was a lot of general chit chat but at the core there was a life and death situation.

After I had been there for a short period there was a woman who was being a real irritant to some of the members and no matter what you did she just couldn't get it together enough to understand. So John had to ban her and while he had no choice he was clearly upset by it and so was i. I knew where she was posting and I felt she could not take the banning and was really concerned for here. Two days later I found her on a site and talked to her for awhile. She was so disoriented and wouldn't contact anyone and when she said she was going to sleep I waited for an hour or so to see if she came back. That day her husband came on to say she had passed away in her own bed alone during the night. He blamed the site for causing her anguish and you know I had to agree.

We all had long posts about it and many had problems with what they had said to her in the paast and felt to blame but there was no blame to give out. It was beyond any of our most sincere offers to help her. Her face is forever in my mind. Small, serious with long beautiful hair. Many here can remember her I am sure.

When you are a moderator it is a very serious project and that is why i am forever saying I don't want moderators. If she had of been allowed to talk and say what she wanted to there would have been someone to share with her. Being told she could no longer talk cut her off from help and support. true she may have never found anyone but at least there was a chance she may have.

You know right now I can't even remember her name but her face is as clear in my mind as my own.

Tidilly little comments that in everyday llife would be as nothilng are illminated on this site as well as Braintalk and should be ignored unless you can help and assist. All the small talk of sorry for you and praying for you don't really cut it. All it indicates is what you feel and not what the person onthe other side is feeling.

I like positive, and I don't mean saccarine santimonious remarks but straight from the hip truthfull reponses as there would be in a "real"conversation. That takes time to get to know the person first and then tak truth.

Having so many moderators around is confusing I would imagine to many of the newbies and especially when three or more of them respond to one post.

It must be overwhelming to some, maybe not all.

The name just came to me "Cat" was what she used to call herself. I think?

So this site here is a continuation of Braintalk and what it was. All of those who are now advocating for Als and Parkinsons started it at Braintalk save for one or two. A few associations came from there as well.

So what I say about the site and whatever happened to John Lester and his desire for it which I fear came under anothers influence is not in any way related to the members there. We had our bitchy days and our good days and we did make a difference for ourselves. John provided the site but it was the members that made it what it was, not him in any way he now takes credit for.

It was the members that made John Lester and it was the members he betayed.

It's a precarious road you walk and what today is or yesterday was it is every day a learning experience. Just wait for tomorrow.

[jena1225]

Great post Thelma. You have said a lot of things I have not been able to put into words

[glenntaj]

people had about Braintalk, and how many felt betrayed by it when it went down for so long with little explanation.

There is the sense sometimes that people who run boards don't always undertand the degree to which peopel depend on them, emotionally and informationally. The Internet is a wonderful thing in that it allows people who are "shut-ins", who previously would have had little communication with others like them--or indeed, many others at all--to exchange data and support each other.

As I said in a number of posts there, though, Braintalk WAS different. It was not only a board where people went for support, but it was also, by its members, built into the biggest database of information on a number of what had previously been obscure neurological topics. For example, due to people like JCC and Pakisa, it was THE go-to place for information about Celiac disease and gluten sensitivity. Others, like Rose and Mrs. D, built the best database about vitamin deficiencies that had yet been seen on-line. Liza Jane, Wings, Rose, Silverlady, Nide44, joe, myself, and others built an enormous information source for sufferers of neuropathy. It was these archives and links that made the place so much more than a place to vent or get support--it made it a place that resulted in enormous differences in how patients approached physicians and how information/research on conditions were received by medical professionals. I'm even willing to go out on a limb and say that what went on at Braintalk was in a major way responsible for certain conditions, particularly gluten sensitivity, "coming out of the closet" and getting international mainstream publicity for the first time.

Because of this, many of us were hit hard by the problems at Braintalk due to the loss of the database and the links. It was not that this info was not available other places, but it was organized and indexed in ways there that enabled people to do "one stop shopping"--they didn't have to click to several other boards. It's why so many people became annoyed at the lack of communication from Braintalk's hierarchy about recovering the archival database, and why so many there, who now post here, have started sites/blogs of their own to never risk a loss of so much information again.

And, of course, there is the still unresolved issue regarding those who gave actual money to John Lester/Braintalk--contributions were solicited on some parts of the board following other periods of difficulty and outage--not getting answers as to where the money went and how it was used to keep the board running smoothly. Many suspect it went to help John Lester set up his Brigadoon community on Second Life. To my knowledge, no explanation as to the ultimate destination of those funds (and it came to quite a sum) has been advanced.

Many began to get the sense that JL had tired of the Braintalk communities, and was now on to other projects. And many of us did resent this because JL had become cyber-world famous through the publicity that surrounded Braintalk, had likely gotten some lucrative project/job offers due to it, and now did not seem interested in the boards anymore. I, and others, proclaimed that at the very least we were owed an explanation, as we felt that we had built the board, and the databases it was known for, as much, in the end, as JL had. (Many, of course, said that it was JL's board and he could do with it what he pleased, and owed nothing to any of us--I even tried advancing a legal argument--the legal issues in cyberspace are somewhat unexplored--that the board, using public bandwidth, did not belong solely to its founder, in the way that televison and radio stations using public airwaves are owned privately but are supposed to be regulated for the public trust.) And this is not even mentioning the somewhat arbitrary and capricious moderating that had begun to characterize the board in recent years.

In the end, many of us went back and continued to post at Braintalk not because we didn't have other options, such as this one, but because it was the place that people knew to come, and we did not feel we could abandon those who didn't know of other places, though we could encourage them to come to those places. (The recent blocking of url links to other forums seems to indicate that Braintalk's current administration takes a dim view of such encouragement.)

I only post this rather long explanation for those who may not be aware of the history, the feelings, and the circumstances, and why it's still a sore spot for so many. (Believe me, this is not the only board at which Braintalk gets discussed.) It may also serve as a cautionary tale for those who create sanctuaries in the still relatively unexplored cyberspace realm.