[ZombieSlayer]

Hi LizaJane

Mad....no not mad. Frustrated and confused most definately. I just don't understand the lack of communication and interaction.

I have no doubt that a lot of folks are mad at him, and I can see why.

As for what we can do to make an impact in his life so he "comes back" so to speak..... I don't know.

I think we have to accept that he has "moved on", and hope that he can accept that too.

The vital thing is to persuade him to allow someone else (hopefully more than one someone else) access to the hardware setup. The present situation is simply unworkable.

Many thanks, Mr. Slayer, for passing all the info along, it's a very great help.

all the best.

[Alffe]

Originally Posted by LizaJane

ZS, I never knew you of of you before BT2 and these threads, and you're a cool guy and I like you. I can tell you really like John, and feel protective of him, and I can tell that you don't want any of us to get hurt or have unrealistic expectations. You've actually done an incredible job of being tactful, diffusing tension, and reassuring as best you can.

But I'm mad at John. I don't know him, I used to think he was the greatest thing since buttered bread for bringing us braintalk, which helped me through getting diagnosed with peripheral neuropathy, and more recently, making a decision for spinal surgery. He brought me something wonderful.

But this is what I'm thinking. Braintalk is a community, a virtual community. John has become an expert in online communities. He LOVES Second Life. I have a friend who is very into it, and she finds it fun and challenging and enjoys the play she gets with it. John clearly loves it and has a group of friends, a life as an avatar, and a really good time being creative with it. So he's actually been able to get a job working for the people who make the product he loves so much, The ______labs. (I don't recall their name). He's been able to market himself to him as an expert in virtual communities and get hired and do something he loves.

But we're not actually a virtual community. We're not avatars with identities we've adopted. We're real people who exist beyond this board. And he's dropped this community cold for his community of avatars and their creators.

So, I'm angry at him for treating us like avatars, for using his work with us as a stepping stone to doing something more fun and more creative, and for having ego involved here which prevents him from just handing the thing over to someone who feels more passionately about it.

I mean, yeah, "anonymous" posts over and over on this thread suggesting we check the flickr sites where John posts his photos of his life. No ill intentions, she/he says. Nothing meant by it. But of course, that's a bit disingenuous. Anonymous has feelings about John blatantly showing how much fun he is having during his summer while he has not been attending to us. And I feel the same.

And it's frustrating that he really doesn't care that much in a personal way. I mean, look, here's Doc John, and he posts, he reads what's happening here himself, and he answers people's questions. He's transparent. John has made his little community of us, and keeps information to himself about the community, shows little empathy, and is treating us like we're no different from the characters in Second Life.

ZS--you've worked with him and you like him, and you're terrific here walking a fine line. But aren't you a bit mad yourself?

I mean, you know, I want to reach the guy and shake him a bit. I imagine an intervention, like one does with an alcoholic family member, where everyone in the family, all the friends, everybody who cares--corners the person and confronts him with the impact of his alcohol use on the people who care. I imagine somehow geting into his office with a bunch of us and letting him know how he's hurt us.

But I've looked at his Second Life profile, and the only way to get an appointment with John, is as an avatar, in the game, in the office he has there.

And that's a bit too much work.

You think there's any way we can have an impact on him and get him to care enough to do the right thing by us?

Also, you know, when he last asked for money, I was not cheap with him. I paypalled over to him $1000. I've never given that much to any one charity--it's huge for me. But you know, Braintalk had done so much for me and was doing so much for others, that I was happy to support it and assure its survival.

I mean what is with the guy?

LizaJane

Great post LizaJane! You captured my feelings exactly. I go waaaay back at BT...and I well remember JL being actively involved as Doc John is now.
He was always responsive...I have saved his handwritten notes to me, his emails when I had questions.

We feel the rejection...he has moved on and owed us more than being discarded like dirty socks. What he created was a home and we were all family....and now we hurt. It's a divorce we never wanted, at least that's what it feels like.

The big question is what are we going to do now...

Hugs for the room. ~sigh

[monarchbutterfly]

Originally Posted by Alffe

...and I well remember JL being actively involved as Doc John is now.
He was always responsive...I have saved his handwritten notes to me, his emails when I had questions....

Hugs for the room. ~sigh

I miss those days, you know- the crazy funny off topic threads that went on for pages....

[~scrabble]

I remember chatting with JL and other BT members in a chatroom ..... a long time ago. He was actually asking for some feedback and shortly thereafter he really did do something concrete about a suggestion I had made! Talk about being listened to and heard.

*waves @ Alffe

[jccgf]

Zombieslayer, I have to agree you are a good guy .

I'm not mad either, but frustrated by the lack of communication and a two month down time. My monetary contribution to the forums was much more modest. I think had I made a huge contribution... it might stir stronger emotions in me. I can understand that investing big in something only to have it vanish might leave one feeling scammed, violated, duped, and mad.

I'm also not as invested in these forums for emotional support as some others might be, because my family and I are healthy at this point in time...thanks in large part to other members of BrainTalk. I missed it when it went down, but I had other outlets.

I'm still just confused by the lack of communication in regard to BT.

Cara

If that's true that he has moved on to other projects, then the right thing to do would be to put the community in someone elses caretaking. Someone with an active interest. Not let it crash and burn and get to it whenever.

I saw it go downhill after it left MGH. In my eyes it lost some credibility and accountability. More forums were created so it looked like a huge community, but they were seldom used. I remember clicking on a forum for information and there was nobody there, or posts were so old I didn't bother to ask a question, knowing there was nobody home.

Forum Feedback was filled with angry people asking questions and few had answers. I don't think even the mods were able to reach JL in a timely manner. That is a plus for this forum. Questions get answered, even if some don't like the question being asked.

It seemed to be a stress filled free for all (FF). People think docjohn has no rules here and want boundaries. I disagree. There is no need to jump down ppl's throats when they are vocalizing what is on their minds. If something gets out of hand, I have no doubt that DJ would step in. It's nice to be treated like adults.

In the past year, which is far back as I recall, I became bored with BT. Most of the ppl I knew had moved on.

There is always a crop of newbies with questions, but with archives lost from repeated crashes (MGH and HP), alot of the good medical info was gone forever. That for me was inexcuseable.....expecting disabled people to 'rebuild' the info, that with a little care, wouldn't have happened in the first place.

[indigogo]

John Lester made a huge, personal impact early on. He was on the board of the organization People Living With Parkinson's, and actually attended some functions in person. His reputation was totally hands on and responsive.

That's why so many of us are being so patient (no pun intended!) with him now - his reputation goes a long way; we are not willing to give up on him.

But has he given up on us?

[Thelma]

Everything above echoes my thoughts on the subject of Braintalk and John Lester.

I don't think until we hear from him we can know for sure what exactly has happened re the soft and the hardware problems.

But personally I have never in my life been so disappointed in a human being for their actions of disregard for those who depended on them.

By not having the proper help and not informing the members who have made that site a haven in their hour of need he instead let them hang there as mute immovable mannequins.

I have talked via email to him many times and he is not unaware of what that site is in relation to some of their lives. It is literally their only means of cummunication with the world of another person.

What happened to him that turned the caring and concened man he was into this uncaring entity he has appeared to be now.

I say without hesitation that the advent of one person on the forum changed everything for all. He took little by little control and used John on one side and his callousness towards others on the other.

I don't believe John knows exactly what has been going on and if the moderators are right it is a done deal. They too have to endure much but have no choice as John is not open to the truth. Indeed he is not accessible to them either save through this man.

I know some have written of his helping others and while on his own forum he did just that and would again in a minute but he has proven he has no compassion for any other disease or condition.

He only sees his personal power over others and talks and runs by banning as a child in a scholyard would and run to the teacher.

By banning or asking John to ban he tells his own version and then forbids anyone else to voice or another.

But and this is a big but

If you echo what he has done and praise it you will remain on the site forever.

Just say he is right but don't mention th word banned.

That is the forbidden word and I will not be forbidden from using it.

Because in my world there are no throwaway human beings.

I think John shares that feeling as I remember him talking about lthe death of his Father and mentioning that to that very day his parents don't really know what he is tryig to do as they don't use a computer.

So there is in there a warm compassionate man that has demonstrated it over and over again and for me the question remains

What happened John

[anonymous]

Originally Posted by LizaJane

I mean, yeah, "anonymous" posts over and over on this thread suggesting we check the flickr sites where John posts his photos of his life. No ill intentions, she/he says. Nothing meant by it. But of course, that's a bit disingenuous. Anonymous has feelings about John blatantly showing how much fun he is having during his summer while he has not been attending to us. And I feel the same.

Just a few words to clarify...

I believe LizaJane’s post truly sums up most peoples’ feelings about the situation. Ultimately under the current circumstances, JL can do whatever he wants, since he is the one and only person who “holds the key” to BT1 and its hardware/software. I just felt it strange and ironic that although several people were strongly insisting that he was “away from Boston” traveling during the Summer and couldn’t fix the server even if he wanted to, that the photos on his flickr page seemed to tell another story. Yes, he had been traveling over the summer, but it also was apparent that he had been back in town several times as well. He certainly deserves to have a life and I don’t fault him at all for wanting to have a little fun during the summer. What was confusing to me was the lack of updates on the BT main page, especially since he had stated that this is how he would keep everyone updated. As I have stated before, just a few one/two-liners stating, “Sorry folks, I’m still busy and will get to it just as soon as I can.” I believe would have put most people at ease. I am also not mad, just very confused and somewhat frustrated with the whole situation. Perhaps there is still a good explanation for the situation, but I just have no idea what it might be.

Also since BT has grown so large, has become so prominent, and is now a critical link for medical information and support for over 50,000 users, I truly believe (voluntary or not) that it deserves more than part-time technical support. If JL and the current BT BOD cannot provide this, then perhaps it should go back to MGH (if they would take it) or perhaps be supported by a 3rd party server farm.

P.S.
Thanks again to ZS for providing excellent help and a “diplomatic” point of view during this situation.