May 2006 Archives

Even after just a couple of weeks, it’s amazing how depressed I really was, because not only did little get done around the house, I also forgot all the little things we do in the course of our daily lives. Reading the daily paper with my morning coffee, under the canopy by the pool (look someone has to do it) or my writing, activism, posting, blading, biking, DIY and all the other things that constitute my life. Once on the outside, it’s almost like I need a few weeks to ramp back up to my normal pace.

The farther I get from the darkness, the more I am reminded of how long that journey can take, fortunately it seems that the journey out, at least for me, is much shorter that the steady downward spiral in the beginning. So I’m reveling in these past weeks and just enjoying my life again and I certainly appreciate the warm welcome I received when I resumed posting, I just didn’t anticipate the impact of some of the replies that I received.

Many of you wrote to me of my contributions to the site and how my humble words had given you comfort, made you laugh, or challenged you to be more than you thought you could be. You reminded me of how easy it is to forget what we do and how our influence, in whatever form, can often reverberate long past our initial effort.

I can’t tell you how proud I am of many of you, who took my challenges to heart, or found a calling in some of the thoughts that I advanced or ideals that I try to uphold. You reminded me of a very special part of myself that I sometimes forget, the part where I do have the ability to influence people and policy and part of how I, and all the Bloggers do that, is just by sharing our lives.

I’m a pretty modest guy and I generally don’t like the limelight as I believe that sharing myself with others is really more to my benefit, than anyone who reads anything that I write. At times, I don’t think my life or challenges have any great significance other than to me. I just share what I know, or what I remember or experienced and sort of leave it to you to sort out what it means to you.

I like to think of myself as more of a thought gardener, if you will, tossing out thoughts as seeds in the hopes that enough of them will take root and maybe some of them would grow enough to make a difference. As of late, I had forgotten how long I’ve been doing this and after a while you just keep plodding along, often oblivious to what’s happening around you.

So let me start by thanking so many of you for reminding me of some basic truths. As I read through the replies, I am struck by how far so many of you have come and if I’ve played any part in that, then I’m very happy. As I read the replies, I see strong people who have decided to take control of their own lives and to even go beyond themselves and attempt things they never thought possible.

To think that I might have contributed to some of your successes, well pretty heady stuff indeed. So if you’d really like to show your appreciation, I have but one request: whatever passion you have developed, you’ll promise to pay that forward. And by doing that we’ll each contribute in our own special way to influencing our own little corner of the world.

Paying it forward is all the thanks that I could ever want.

There’s a thread in the forums that discusses how people change and in doing so, their connection to these forums has evolved into something quite different from their first visit here. I was disappointed, not in the tone of the thread, rather by the responses of some posters. I opted not to comment there and instead comment on some of the initial responses here and maybe even add a little perspective.

I've been here since 02 and yes the forums have changed, because the only constant in life is change. The forums in 02 had much fewer members and the whole concept was fairly new. I tried the Body website, but their software was/is horrible and when I saw links to here, needless to say, after a few visits I was hooked. When people say that the forums have changed, it’s because they have, but not all change is bad or unwarranted.

When I first joined, the Fears forum had just been added and many of the current forums did not exist, nor did the Blogs. We also had a lot fewer members so it was just easier to keep track of the usual posters and the community of this place started to escalate. It’s still growing today, but with 11,000 members; it’s a little tough to keep track of everyone or to moderate them. Some of what we are now feeling is growing pains; due to the merger and the increased membership, still the community here remains.

So it saddens me, when I hear newer members feeling like the added members are some how a bad thing. Their not, but what we are experiencing is a sort of culture clash, between the newer diagnosed and fossils like me. HIV treatment has changed dramatically in the past ten years, so while it adds to my perceptions, I still have my history with HIV. I also have my reality that I have lived for 22 years with HIV and hence a lot of history. So, of course there is a difference between my perspective and someone who became positive last year.

I think most posters understand what we old fossils are trying to contribute here and yes, we are sometimes paranoid, because we grew up in a very different world. We learned from sharing amongst ourselves, long before the Internet and online forums. We were weary of things that we could not touch as too many lies had been heard by us all. We lived through a time when people were left to die, because there was no other choice. We lived (and still do) in a time when there were/are not enough funds to provide necessary care. For some of us, it’s a history that will forever scar us and my only goal in sharing my experiences, is so that maybe others can avoid my mistakes or benefit from my counsel.

I understand how different a newly diagnosed experience will be and if I’m guilty of anything, it’s trying to impart a sense of history, as well as others, so we don’t keep making the same mistakes. I harp about certain subjects, like under-funding HIV programs, because it affects more people than you can imagine. I harp because our government cannot be trusted to fund these programs, without our dangling a few dead bodies in front of them. I wish I didn’t have to do it and I tire of it, but until all poz people have access to medical treatment, I’ll keep harping.

That history also impacts how I feel about many subjects, but I’m always open to change. I enjoy reading new views, without the old biases and I believe that HIV treatment will continue to improve, because there is a new wave of warriors. I like the fact that new posters come here and sometimes rail against the machine. Fresh blood is imperative to this site, because the role that these forums play, in each of our lives fluctuates and so as some step away, others come forward.

We all follow our own continuum and when we decide to move away from here, it’s not any reflection on what is here, rather it’s the result of what is here; all of us. To me, the greatest compliment I can hear is for a poster to have regained, whatever they came here for and for them to move on with their life. Some of us have decided to linger a little longer than others and that just reflects the usual ebb and flow of this place. Posters coming and going is perfectly natural and it’s certainly nothing to take personally and it in no way diminishes the forums, nor the members.

Yes things have changed over the years, but this forum remains fairly constant, even given the greater number of members. Unfortunately, as with any public forum, you run the risk of attracting all types and those include Denialists, Trolls and Flame wars. When this started, a few years ago, the Moderators interceded, especially in the case of Denialists (who tried to shut the servers down), and more recently these "attitudes" began to invade the very forums, in the form of posters, not all of who are decent in their treatment of other people.

I hate the fact that the first post you see in this forum discusses a "Time Out" policy, when it should have a permanent post that welcomes new members and gives them an overview and a little lesson in AIDSmeds forum etiquette. Given what new people see now, you'd think that we were a bunch of animals and what irritates me even more, is that policy is a direct result of our continued growth and greater visibility. We had the option to stop attacking people, we tried numerous times to establish some form of decorum, but given the larger number of members, that became impossible. You can’t police 11,000 members through a virtual honor system period.

I also don’t buy the stifling of voices complaint under the new time out policy. I’ve been here long enough to have witnessed some major, major threads where the opinions flew fast and hard, but the personal insults were absent. That’s what defeats this place, when we tolerate people being downright vicious, or disrespectful to other posters. We can change that by our actions and it may surprise you to know that all of the banning were the result of either violating the terms here or excessively rude behavior, not because of censored content. That’s pretty major for a public website and I’ve yet to see anyone penalized for voicing their opinion in a reasonable fashion.

What many people may not realize is that there is a backbone here that consists mainly of Ann, Andy & Tim, with Peter being charged to keep it all together. I’ve known these folks for a few years and I can more than attest to the caliber of their characters. Don’t think they want this policy, but what would you have them do? We had our chance, in various threads we talked about what to do with abusive posters, but nothing got done, the problem worsened and the Moderators had to devise something. Don’t like the policy? Then offer an alternative, they will listen, they always do. Over the years these forums have expanded, as we requested them and the Blogs came online.

The people who administer this site, share a vision of what AIDSmeds will become and if anything, our Moderators are to be congratulated for keeping the integrity of these forums, even after the recent merger. Admit it, it's a job that you wouldn't want, but somebody has to do it and we are the ones who benefit by having a forum that supports reasonable dialog in a respectful fashion. Since when did that become a bad thing? Nobody is telling anybody what they can or cannot say, just how they should say it, reasonably. Very big difference when compared to actual censorship.

No matter how you might feel, it still all comes down to what to you want this place to mean to you? And what are you doing to help it reflect your wishes? Unfortunately it seems that so many new members are joining, that the sheer volume has lost a lot of the intimacy, not by either desire or design, it just has. Couple that with our personal changes and growth and an ebb and flow rhythm with this place seems almost natural.

We should never fear when people grow beyond these forums, as that has always been our goal. Each of us came here, searching for whatever we thought we wanted and for most, I believe that they at least get what they need and with those needs met future growth is inevitable. We are a group of strangers brought here by a common disease and look what we have.

Face it, the forums will forever change, but it doesn’t have to be a bad thing. I assume that most of us are still getting our needs met, or we would not be here. So maybe we should stop saying how the forums keep changing, like that’s a bad thing. We’re humans and we do our best, often under very trying circumstances, to support this forum. Why don’t we stop concentrating on what we see as so wrong with the forums and work to improve all that is right with this place? Where else can you go, to get this kind of community, concerning HIV?

So what’s it going to be? Do you want to see this place as half empty, or half full? Some of us need to grow thicker hides, while others need to open their minds a little more. It’s said that change comes one person at a time and why should here be any different? Hopefully we’ll decide to work together to develop a solution, rather than becoming segmented, further compounding the problem.

Personally I like change, as long as I’m along for the ride. I still see forums populated by good people trying to come to terms with this horror and others, already on their journey, stopping long enough to extend a hand to the newly diagnosed. We all have plenty to learn and when it comes down to it, the only impediment to that happening is plain and simple: us.