POZ Community Forums
Main Forums => Living With HIV => Topic started by: Val on April 05, 2007, 05:31:08 am
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The new kids on the block living with Hiv have arrived here at our forums, and it is my guess that they are here to stay. They profess a new reality that we "oldbies" will have to get used to, and this in spite of liking it or not; in spite of agreeing with it or not. These new kids are opinionated, strong-minded and most importantly they do not belong to any cliques! Therefore, it is my opinion that they will not follow "the sycophantic cloning process" (my quote) displayed more often than not in these message boards.
However, what attracts me the most about their ways of dealing and facing their daily life with Hiv is that big-hearted, lusciously orchestrated unison and symphony-like threads with its sparking gamelan, tymbals, berimbau and drum-inspired riffs --- hey, they are the You Tube generation, after all --- and easy-to-dig posts that sometimes sound like...melodies! In fact, they are hardly ever morose or dark in mood and disdainful --- introspective, yes, they can be that, but never pessimistic or angry and I believe in their honesty. Well, some of them are angry from time to time; but, then again, who is not?
The new reality that these kids set forth is the one-pill-a-day actuality. It is indeed far from the daily and sinister truth that we, oldbies, knew back in the old days. In fact, I do remember vividly and markedly my own daily reality and life with this bug. At a certain point, I would take up to 36 pills in a single day! Nevertheless, this cruel reality that was my lot does not give me any authority over them. It should not be used as a right to imply that their way of coping with this disease is somewhat reckless and misguided. If anything, it does put me on a certain category of long-term survival due basically to Science and my own struggles and victories over Hiv.
Besides, the mirror in which the newbies like to look at is not the "Till Eulenspiegel mirror", or the famous "Owl Mirror" as referred already in another thread of mine. No, the mirror that they prefer is similar to the one used by the witch in the Snow White fairy tale to ask "who's the most beautiful one to go to the ball"! Lipodistrophy is not as big a problem for them as it was for us back then.
Mind you, I am not trying to be their spokeman or anything similar, but I am expressing myself freely and without any sentiment of requital. Yes, these new kids on the block do befriend and support olbies like me whenever the occasion arises. But, that doesn't mean that the oldbie that I am has to defend and/or spank them. I have no right to attempt such foolish thing.
And because their reality today is indeed contrastive with what was ours, it is only normal to expect that their attitudes and, therefore, replies to posts be as contrastive and bold as their reality. One does not have to look further than these forums to remark all the informations about Hiv that is readily available at their fingertips. Information and guidance that would only be dreamed of by most of us back in the 80s! Now, does this generation gap allows for posts that tend to increase the already existent cleavage between "newbies" and "oldbies"?
Is the You Tube and Living with Hiv generation supposed to be told --- and reminded --- time and again that AIDS is a deadly disease even with all the undeniably and almost miraculous advances made lately by Science? Are they supposed to be alerted that death is knocking precipitately in their doors? Perhaps not. When I write these words, in fact, I have in mind especially the newly-diagnosed that come to these forums for support and, why not, a little relief and laugh. These are the newbies that are most of the time fighting with the contrasting feelings and the harsh reality of an AIDS diagnosis.
Now, I am aware of the fact that enthusiasms (especially with the written word) run amok when one is feeling these kids need perhaps some correction and we, oldbies, feel messianic. We might be just guilty for it! I am also conscious, however, that it isn't in the least temperamental or over-bearing from the part of the newbies to claim a little revelry. And with this feeling in mind, I would rather refrain from raining on their parade unless I expect them to pee on my "death parade"! So be though neither, oldbie!, if you expect a little respect from them!
Sloth, inaction and especially indifference towards their replies, moreover, will definitely only exacerbate the feeling of cleavage that is slowly infiltrating and taking hold in our forums. Nit-picking and nit-witted remarks regarding what the newbies experience is not the answer for this ever-growing feeling of uneasiness really. In addition, are we all to be at loggerheads with each other because of our ages and differences and, therefore, with the ways we live through these exciting new years with HIV?
I will bow out and quote once again one of the newbies that I enjoy greatly in these forums and say to all of you, "YOU GO, GIRLS"!
Val
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Edited to correct too many typos, grammar erros and add some missing words
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Val -
Nicely written. I think you could refer to this as the first "generation gap" in the HIV realm. The split isn't chronological age but the changes in treatment as the medical sciences evolve the way this disease is treated. It is going to be interesting to see how even the next set of drug classes further cause changes in the generations. Being new to this forum, I can't comment on the change in tone but I think everyone shares the same fears of the disease. Although the pill burden may have decreased, we are each reminded of the seriousness of our condition on a daily basis. I don't think any of us take it lightly even though the tone may be lighter.
Tom
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Yes Val,
And no, death is not out of our minds. You go girl and I talk about those fears and hopes almost on a daily basis. I am no stranger to what it was like. I saw a family member deteriorate with the typical course just a year before HAART. I think sometimes the ideological difference in the belief in spirituality makes it easy to constantly write about death for some people, but not everyone believes in this, and constantly hearing about it becomes hearvy on the newbies. We are not denying the suffering that prededed us, that is not my style. However to constantly discount our experience is profoundly arrogant and non inclusive, which is what we come here for. To be included, supported, and in a very superficial way at worst, connect and sometimes in a very profound way influence each other regardless of the impersonal nature of this medium.
Thank you for your post.
rob
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WOW!!! That was fantastic. I really don't know what to add because you said it all so well.
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Val,
What a wonderful and gentle reminder of the differences between long term survivors and newly diagnosed. I have said numerous times that what we face today being new to HIV and what you and so many others faced in the 80's and early 90's is almost a completely different albatross. And rather than point out the differences we should all realize that even with our vastly different experiences we should have a common goal. That goal should be one of sharing, supporting and working together to continue to move forward in the areas of medical care and reducing the stigma of being HIV+.
Thanks for setting the tone for my day,
Woods
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Val,
I think it is nice that you posted this, and it assumes that we all live in a European style of health care system, that insures treatment and therefore long life. Unfortunately, in the United States of America, health care is a tenuous promise that is only as secure as a hard on in the oval office. Larry Kramer, where are you when we need you?
Beyond that I GOT IT, AND WILL REFRAIN FROM POSTING ANYTHING HERE THAT MIGHT INSINUATE THAT THIS TERMINAL ILLNESS IS ONLY THAT BECAUSE WE LIVE WITH BLINDERS FIRMLY IN PLACE.
Bitch Slap acknowledged!
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Thanks for the thread Val. I do think newbies like me need to remember the "oldbies" who were the guinea pigs for treatment. If it weren't for your experiences, we'd still be on 36 pill a day combos. I hope that when my time comes I'll respond to the new, simpler therapies. Only time will tell.
As Moffie points out, meds are only as good as your access to them. So many times on here I am thankful that I'm in a place where that access is not the struggle that some of our members face.
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Val.
very nice thread. I give it 2 thumbs up, why? because I know it came from the heart. :-* I think it is hard for many of us newbies to be told that we are in denial and we do not take this disease as seriously as many others who have lived with this disease for decades. I think it is very hard to believe that anyone who is in "denial" would even come to participate in these forums. I've met with many people around my age who are positive as well who refuse to talk about it and to inform themselves. I can agree that this can be a terminal disease if left untreated and with treatment failure, but for the most part it can be a chronic disease. We must not try to change anyone's perspective of this disease because everyone experiences it differently, so if certain people want to share with us their pain and suffering so be it but lecturing us is totally different. For now, let's live at peace with one another PLEASE.
Al
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Didn't we create a newly diagnosed forum so that those of us with AIDS-related issues could freely converse without unduly impacting the "newbies?" Or do we need another forum for people with death and disability issues?
With apologies to the thread, I sort of read this as a bitch slap to Moffie as well.
I do not want to cause problems with the newly diagnosed and asymptomatic. And I had anticipated that creating a whole forum for those individuals would allow this forum to remain relatively open to the gamut of this illness. Sadly, it seems that this is not the case.
Its sad that there doesn't seem to be a place where people in pain, who are suffering from a terminal illness, can vent, discuss, and offer encouragement.
But that is how I feel, and why I have curtailed my participation in this forum. I will keep my unsightly sickness and death to myself, and my blogs.
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I don't know if I can be categorized as a newbie (diagnosed a year ago, once a day regimen) or oldie (10 years poz, infected probabaly through healthcare ignorance, having to deal with questions such as "can HIV pass through sharing the same toilet" where I am from and where my boyfriend is from).
I don't know if I am privileged (treated in the EU, open about my status to many people and not suffering discrimination) or hanging by a thread (temporary insurance, cancellation of home country's insurance due to my absence, strong stigmitazation in home country making the thought of return unbearable, and only today, an email from the head of my workplace insinuating that he wants answers and fast about my "mystery illness" - I have to think hard and quick if I want to disclose to him as well and what that will mean for my employment/treatment prospects).
But I do know one thing for sure, without people like Moffie, I would not be alive today. Their continuous plight has a profound effect. It filters into other countries, that watch what goes on in the States, and impacts descisions made there. It started an iterative chain reaction that spans the globe as we speak. In fact, it enabled this forum.
So, I am indebted.
Sincerely,
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Al,
"For now, let's live at peace with one another PLEASE."
HERE HERE!
And that will be sucessful if done on your terms and yours alone!!!!
Geez Jonathan, you read my mind ........ to the letter!
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At only a little over two years since diagnosis, I guess I still qualify as a newbie on the block. This newbie, however, is not afraid to read about death or opportunistic infections. I can handle warnings to be ever wary of funding cuts, complications or regimen failures. I'm also ever ready to jump in the fray to talk about YouTube, porno or toilet humor. I embrace the revelry, yes. What I am afraid of is creating an environment where people feel hesitant to bring whatever they need to the table- the best and the worst. Dismissiveness can run both ways, and if we permit it in either direction, we fail.
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Didn't we create a newly diagnosed forum so that those of us with AIDS-related issues could freely converse without unduly impacting the "newbies?" Or do we need another forum for people with death and disability issues?
With apologies to the thread, I sort of read this as a bitch slap to Moffie as well.
I do not want to cause problems with the newly diagnosed and asymptomatic. And I had anticipated that creating a whole forum for those individuals would allow this forum to remain relatively open to the gamut of this illness. Sadly, it seems that this is not the case.
Its sad that there doesn't seem to be a place where people in pain, who are suffering from a terminal illness, can vent, discuss, and offer encouragement.
But that is how I feel, and why I have curtailed my participation in this forum. I will keep my unsightly sickness and death to myself, and my blogs.
wow, no one is insinuiating that Jonathon. If you read through the threads in the "living with HIV" tons of threads have been written about very serious issues such as death and very severe illness and many members have given them support including newbies.
I didn't know you had to spend your time only in the "newly diagnosed" if you are a newbie, does that mean you are gonna tell all the women to stay in their new forum of "positive women". Will you Jonathon?
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Oh Moffie,
I was just reading your blog and agreeing with a lot of what you have written. It was never my intention to discount the value of your experience, and I don't want my Harley neighbor to shoot you nor my sweeties to beat you up. :D I think that you are a nice old man, but perhaps feel frustrated because you see our healthcare system collapsing before your eyes. The truth is that it is not only people with HIV who are suffering because of a vastly inadequate healthcare system, but anyone who is now uninsured.
Lashing out at people who don't see that the sky is falling does little to further your cause. I am not a privileged person by any means. I work hard for the little that I have, and agree that not everyone has access to the care they need. I have seen it in my life as a teacher, and as someone who has done volunteer work. When my loved one died, I saw him struggling to get care at the county hospital and took him there myself along with my boyfriend and fought for him. Treatment is infinitely better than when I first encountered this disease personally.
I also saw someone in my German class suffer, and eventually went to his funeral, though he was just a friend I had a chance to get to know him, how he traveled to europe for the latest treatments, how he still died. I reiterate that I am no stranger to death by HIV.
We cannot discount the progress that has been made. I live in California where healthcare might be better, even for the uninsured. I just think that discounting the progress that has been made for all of us newbies and oldies is not productive. How can we make it better for all? That is the question.
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I am barely past the first paragraph and I'm thinking ---le sigh--- "This is a sideways bitch slap at Tim...".
Not nice.
Just saying.
And still reading...
Melia 8)
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wow, no one is insinuiating that Jonathon. If you read through the threads in the "living with HIV" tons of threads have been written about very serious issues such as death and very severe illness and many members have given them support including newbies.
I didn't know you had to spend your time only in the "newly diagnosed" if you are a newbie, does that mean you are gonna tell all the women to stay in their new forum of "positive women". Will you Jonathon?
No, I will not. But if a woman complains about the issues raised by gay men in this part of the forum, I would certainly direct them to the women's section.
Same with the asymptomatic and newly diagnosed. And I wholeheartedly disagree that this is not a pattern of ongoing ostricization.
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I am barely past the first paragraph and I'm thinking ---le sigh--- "This is a sideways bitch slap at Tim...".
Not nice.
Just saying.
And still reading...
Melia 8)
ditto.
too bad, because there are some good thoughts between the digs,
but the digs sort of take the wind-out-of-the-sail for me.
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No, I will not. But if a woman complains about the issues raised by gay men in this part of the forum, I would certainly direct them to the women's section.
Same with the asymptomatic and newly diagnosed. And I wholeheartedly disagree that this is not a pattern of ongoing ostricization.
Cool. I have Jonathon's permission to stay because I am not complaining just giving my opinion.
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I am going to call it as I see it, this is just another in many not so transparent slaps at another forum member in the guise of a sincere topic. The sympathetic Greek Chorus can praise it to the heavens all they want, we all know the motive...you can skirt the rules but you can't disguise the message.
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Jonathan,
I loved your blog about what you were going through and felt for you. I still do. Nobody has ever implied that you nor anyone should hide what you are going through. But the constant discouragement from a limited few is what the issue is. Telling people that their optimistic prognosis is denial, is cruel. Would I have told my brother in law that I feared he would die in his bleakest moment. Hell no. Why is it okay to tell people that here? We a disease that is now for most treatable, even if you have had it for 23 years. Is it a walk in the park, no. I am not saying that. I have posted lots on my health and I almost died this last year were it not for a simple little antibiotic that almost killed me in its own right. Yes it is a struggle, yes there is hope.
rob
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Oldies and Newbies, please let's just kiss and make up
Okaaayyyyy?
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Jonathan,
I loved your blog about what you were going through and felt for you. I still do. Nobody has ever implied that you nor anyone should hide what you are going through. But the constant discouragement from a limited few is what the issue is. Telling people that their optimistic prognosis is denial, is cruel. Would I have told my brother in law that I feared he would die in his bleakest moment. Hell no. Why is it okay to tell people that here? We a disease that is now for most treatable, even if you have had it for 23 years. Is it a walk in the park, no. I am not saying that. I have posted lots on my health and I almost died this last year were it not for a simple little antibiotic that almost killed me in its own right. Yes it is a struggle, yes there is hope.
rob
I do appreciate your kind words. And I have written countless times that blind despair is just as rooted in irrational assumption as blind optimism.
But wouldn't it be awfully generous if we recognized that some people on the forum are grappling with daily excruciating pain? That they are seeing a collapse in our healthcare system and no longer have the strength to fight it? That they are indeed dying from AIDS?
I'm not saying give anyone a pass to be a jerk. Being mean is inexcuseable, even if it has a valid explanation.
If someone is totally inappropriate, I would think that their posts would be reported to the moderators. And that anyone has the responsibility to do so, as well as utilize the "ignore" function for those posters who conflict with a person's choice of paradigm.
I just think it's very sad that healthy people have nothing better to do than tell sick people to reign it in. And that's the message I have recieved here, especially from the snide comments (not from you).
It's great to have hope.
Better, I think, to have compassion.
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K, using a phrase to describe Moffie as "a nice old man" sounds awfully patronizing to me and hardly the sort of thing that is going to make the object of such a remark open to dialogue with you. Think about it. How would you feel being the recepient of a comment like that? You'd love it, right? I don't think so.
As a general observation about this thread, it struck me from its inception that by categorizing people as newbies and oldies it automatically creates a setting for conflict rather than understanding and mutual respect. And "us" and "them" situation. Very unfortunate because speaking from either point of view seems so easily to create an (unnecessary) obstacle to understanding which might otherwise not exist.
After all, an essential part why this site was founded was for the for mutual sharing and support among people who as individuals are (wonderfully) diverse.
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Jeez Louise!!!
How dare Val speak his mind.?!?!? The nerve to disagree with a sacred cow. The audacity.
Val, your post was beautifully written. You expressed a viewpoint that went against the grain, and have shown bravery, knowing the ensuing feeding frenzy that would follow.
You go girl!!
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Forgive me Andy, but Tim did suggest yesterday that his "sweetie" throw us to his gun toting biker neighbor for target practice, and you ignored that one. Now calling him an "old" person is insulting. This I am afraid, is a prime example is the unequal treatment shown by the moderators, that I have seen, as I speak only for my self, and do so at my own risk.
Respectfully,
Scott
For the record, I recall Moffie referring to himself as an old man. When did old become a pejorative???
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Jeez Louise!!!
How dare Val speak his mind.?!?!? The nerve to disagree with a sacred cow. The audacity.
Val, your post was beautifully written. You expressed a viewpoint that went against the grain, and have shown bravery, knowing the ensuing feeding frenzy that would follow.
You go girl!!
the nerve to criticize a sacred cow?
So you saw it as an attack on Moffie as well. You simply liked it and agree with it.
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The crux of the issue is and was from my first post, that I don't like being told that I am going to die from this disease, when it may or may not be the case. That was all. This is a website for support and encouragement, last time I checked. I meant nothing by the nice old man comment as Moffie has referred to himself as that many times. I am 36, no spring chicken. I wrote what I though was constructive post and I guess I failed.
rob
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Forgive me Andy, but Tim did suggest yesterday that his "sweetie" throw us to his gun toting biker neighbor for target practice, and you ignored that one. Now calling him an "old" person is insulting. This I am afraid, is a prime example is the unequal treatment shown by the moderators, that I have seen, as I speak only for my self, and do so at my own risk.
Respectfully,
Scott
For the record, I recall Moffie referring to himself as an old man. When did old become a pejorative???
I recall that too Andy...
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Unfortunately this is headed no where fast.
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Tim, just ignore the comments. Kids these days are just fucking rude. They don't think before they speak. Just ignore them, they didn't have to fight to get the medications that are available today. They take it for granted. In the two years I've been here at AidsMeds have I never seen it stoop as low as it has gotten. It's ashame, because at one time this was an excellent forum and one of the best on the web and it far from being that today.
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* edited (i was yelled at for posting a pic)
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Tim, just ignore the comments. Kids these days are just fucking rude. They don't think before they speak. Just ignore them, they didn't have to fight to get the medications that are available today. They take it for granted. In the two years I've been here at AidsMeds have I never seen it stoop as low as it has gotten. It's ashame, because at one time this was an excellent forum and one of the best on the web and it far from being that today.
Nothing is as rude as telling people who have an optimistic perspective about their medical prognosis that they are in denial.
Imagine going to a cancer ward, and telling people receiving chemotherapy that their hope in treatment is merely denial.
How are those living with HIV any less deserving of this consideration?
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Thanks for the thread! Although I see some slapping (and we all need a good slap from time to time), it hits the nail on the head and drives it home! We do have a generational gap, which as an oldbie, I am saddened and rejoice!
Saddened by the facts, us oldbies could have completely prevented all new infections.
In many cases, I find newbies less than willing to partake in the continued struggle to retain the access to funding and programs that have helped us come to the point we have and a failure to join in the fight to regain what we have lost, not to mention the funding that needs to be added to insure everyone has the ability to get the assistance/medicines they need. Quoting something I was told about 3 months ago in an HIV/AIDS chat room, "the end is near, their taking all the money away, we won't be able to get our drugs, fight fight, they have been screaming this for years and every time Ryan White comes up for review it is approved. You are obviously new and buying into the old farts panic attacks".(this person and his supporters didn't even know Ryan White was a real little boy that lost his war, they thought it was the name of some senator or congress person!)I believe I will take that with me forever, sometimes it makes me laugh, but it rest heavy on my heart!
I re-joyous in the fact that everything we went through, experiments we partook in, hours sitting on the toilet from over dosing of drug (remember AZT's first round-12 pills every 4 hours?) and all the other horrible thing, today allow others not to have to go through that! We knew we where the ginnie pigs, took that upon ourselves, and where willing to donate body parts, in order and hope that our lives would in fact one day save/extend a life. We did it!
We stood up to the powers that be, so someone could afford those drugs. Remember when President Regan wouldn't even say or reconize HIV/AIDS? We prolonged some lives! Now, well, where are we? OLDER yet, still here to share the history and still fighting for a future. Tired, worn out, drug through the mud, but still here.
We must all learn from each other! I admit, some newbies to the virus are naive to the past, present and future, yet are valuable and can shed some new light on things. They are the future, must and will pick up the fight. I can only hope that they pick up on it before history repeats itself.
Regardless of personal opinion conflicts, one thing that is total clear and remains a truth,
Together we stand, Together we fight, Together we LIVE! Divided we fall, loose, and die. (hmm, almost sounds like something a few in charge would love to see!)
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Val.
I know English is not your primary language but you do have a wonderful way with our idioms, syntax etc. I just love this:
"...and with this feeling in mind, I would rather refrain from raining on their parade unless I expect them to pee on my "death parade"!
Next time someone tells me I'm raining on their parade I'm going to tell them they can piss on my grave!
robert
(who really does feel compassion and hope truly reign supreme here at the forums)
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ODY, WHAT A WONDERFUL POST!!
Those of us who are newly diagnosed must never take for granted what you and so many others went through to get us where we are today. While our experiences are different we must all continue the fight. When I do volunteer work with local AIDS organizations it is not new blood volunteering, but those who have weathered countless storms. It is incumbent upon newly diagnosed not to become complacent or things could return to the way they once were. We must continue to press for more research, more accessibility to services and health care and more government funding. We need to appreciate what each of us brings to the table or we are doomed to fail.
Woods
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Exactly Woods,
Well said.
rob
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Scott and I Have,
FYI an entry of mine from that other thread yesterday:
"Moffie, you're right, mean is mean.
And we're not sitting in a living room. Face to face can sometimes prevent the kind of misunderstandings that occur here. Also, saying what your partner would do to people for their comments here is taking/making another op to slam at someone. Stop! No more, please.
Hit me over the head for this, but I am going to say this to you, and in fact to everyone here. That awesome effort you put into getting on with your life in spite of all the challenges to your health and otherwise, I'm asking you to put some part of that into NOT HOLDING ON TO AND NURSING grudges and insults, real or perceived. Don't make me start doing more than warning here. But this stuff really has to stop."
...........
Later yesterday I was re-reading the thread and realized I had inadvertently left out something I wanted to say to Moffie. I thought the"living room" passage was out of line and ammended to the above.
For what it's worth I calls them as I sees them, which I know is what other moderators aim to do as well. It's ironic how often some members who are sometimes identified as "favorites" get pissed at us for showing favoritism towards others. I guess it just comes with the territory so just take my comment as a report and not a complaint.
Cheers,
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i find that the people on the "I just tested positive" section are not of the same mindset of the people that you are calling "newbies" the people on the newly diagnosed section are in shock, traumatized, and scared (as we all are when we first find out). They need support which is why it exists, but then you realize that the reality is that things are much better than they were and you get the "newbie" outlook and realize everything will be ok if you take care of yourself and you have access to good healthcare.....
If you listen to the "oldbies" that post in that section and the "newbies" they have different tones, and thats ok because each person takes advice differently and they can choose which mentality works best for them....
I always appreciate advice and support from everyone no matter how long they have lived with the disease (because the truth is it is a bitch and we all go through out "moments" where it affects us more)....but when im not in one of those "moments" i prefer to live on my little cloud and be happy (not denial just optimistic)....
Love all you guys New(bies) or olbies :-* :-* :-* :-* :-* :-* :-* :-* :-*
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i find that the people on the "I just tested positive" section are not of the same mindset of the people that you are calling "newbies" the people on the newly diagnosed section are in shock, traumatized, and scared (as we all are when we first find out). They need support which is why it exists, but then you realize that the reality is that things are much better than they were and you get the "newbie" outlook and realize everything will be ok if you take care of yourself and you have access to good healthcare.....
If you listen to the "oldbies" that post in that section and the "newbies" they have different tones, and thats ok because each person takes advice differently and they can choose which mentality works best for them....
I always appreciate advice and support from everyone no matter how long they have lived with the disease (because the truth is it is a bitch and we all go through out "moments" where it affects us more)....but when im not in one of those "moments" i prefer to live on my little cloud and be happy (not denial just optimistic)....
Love all you guys New(bies) or olbies :-* :-* :-* :-* :-* :-* :-* :-* :-*
Well said Mr. PuertoRico
I love you too.
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I agree with Josh on that one: I always took the "I Just Tested Poz" forum to be for those in the immediate HOLY SHIT phase, not so much folks who have had the diagnosis for awhile. At what point does the "recent" / "newbie" / "just" expire? Just wondering. It may the last place this aging hen can grasp a "spring chicken" designation. ;D
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I agree with Josh on that one: I always took the "I Just Tested Poz" forum to be for those in the immediate HOLY SHIT phase, not so much folks who have had the diagnosis for awhile. At what point does the "recent" / "newbie" / "just" expire? Just wondering. It may the last place this aging hen can grasp a "spring chicken" designation. ;D
Don't you worry muffin...you will always be a chicken to this over-the-hill hawk. ;)
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Don't you worry muffin...you will always be a chicken to this over-the-hill hawk. ;)
I've also been told my eggs are top-shelf. Just ask Matty. ;D
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It may the last place this aging hen can grasp a "spring chicken" designation.
Many words can be used to describe you but "aging hen" are not among them.
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There are different stages that we're in. The "omg omg am I going to be infected", the "jesus fucking christ no that can't happen to me", then either a state of hilarity like me and Aupoint, or a serious confrontation with what the future will be, then the meds, then the OIs etc.. We already have forums for each of those stages, except maybe for the serious OIs.
To me, the "oldies" bring me their experience, their pain, their difficulties, whether it's to do with physical problems, money issues, etc etc.. I read them and this is getting educating me in some way, preparing me for when "it's not funny anymore". I can certainly understand that people that have had to live with 48 pills a day regard the "newbies" having access to therapy with one pill a day as having to deal with this disease in a "easier" way. Also, it is clear to me that they have had the death sentence hanging over their head right from the beginning, whereas us newbies can consider having a chance to escape it.
I know the "oldies" will be here for me when I have questions about meds, symptoms, OIs, etc. It's their experience that I need. They should also know that it's not because my life is "easier" that I can't understand their pain and suffering. Compassion and understand have nothing to do with age.
Milker.
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I know the "oldies" will be here for me when I have questions about meds, symptoms, OIs, etc. It's their experience that I need.
Hear hear!
I would add to that list: ADAP, Medicaid, SSDI disability, activism, the skinny on big pharma and things of that nature
Newbies could answer my questions too but clearly in some cases it would be the blind leading the blind
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Aren't young people supposed to be optimistic and feel invincible? If someone newly infected says "I'm going to be okay. HIV is a manageable condition. I just have to take my meds and I can live a normal life" who am I to say they won't? HIV erodes hope, it erodes belief in the future and I'm not going to contribute to that by bursting their bubble. I also don't see optimism and progress as a dig against people who are struggling, who have struggled or who have died from HIV. Similarly the newly infected need to appreciate that many people on here are disabled, can't afford healthcare, have chronic pain, lipoatrophy, clinical depression and a whole laundry list of problems related to HIV. We can get cranky.
We don't need separate forums for "newbies" and "oldies" or the asymptomatic and symptomatic. I think this forum should be about sharing our stories, good and bad, and offering support, advice and respect with a little fun and levity.
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Aren't young people supposed to be optimistic and feel invincible? If someone newly infected says "I'm going to be okay. HIV is a manageable condition. I just have to take my meds and I can live a normal life" who am I to say they won't? HIV erodes hope, it erodes belief in the future and I'm not going to contribute to that by bursting their bubble. I also don't see optimism and progress as a dig against people who are struggling, who have struggled or who have died from HIV. Similarly the newly infected need to appreciate that many people on here are disabled, can't afford healthcare, have chronic pain, lipoatrophy, clinical depression and a whole laundry list of problems related to HIV. We can get cranky.
We don't need separate forums for "newbies" and "oldies" or the asymptomatic and symptomatic. I think this forum should be about sharing our stories, good and bad, and offering support, advice and respect with a little fun and levity.
Thank you GSO. Thank you for not making us feel guilty for being young and hopeful.
Al
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I am going to call it as I see it, this is just another in many not so transparent slaps at another forum member in the guise of a sincere topic. The sympathetic Greek Chorus can praise it to the heavens all they want, we all know the motive...you can skirt the rules but you can't disguise the message.
I will not get into any details about this post, but would like only to affirm that I will expect this and much more from one of the active members of the clique I was referring to. What you all do need to be aware, though, and please this is serious, is that your cliquish behaviour and bullyingin these forums have allienated several members. Do you frankly realize this? People who were having a hard time with this disease told me they cried and spent miserable hours/days because of your funny ( funny just for your clique, of course) and more than sarcastic remarks? Is this plain-spoken or do I need to make a little drawing for you all to understand? Please!
I am addressing a growing problem in this post and am fully aware that Moffie will be concerned. However, he was not the only one! There have been several threads discussing the subject and none really came to a valid conclusion. It is high time to stop it. Unless you all choose to ignore the problem and continue fighting each other!
Val
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P.S. As for the little games that your clique is used to play, called Netiquette, I won't give in to that. However, the day I do you'd be surprised how well I can play! Besides, I am quoting you just as an example, since your opinion (for all the clique, by the way) does not really count "for me". It is biased from the beginning! The day you start behaving as strong and independent adults, I will consider paying attention to your moanings and "états d'âme".
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Val, please stop with these veiled references to cliques.
It's still just flaming no matter how you dress it up with words.
So lay off of it right now.
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Of course, Andy, I will stop. There is no point discussing the subject any further! However, and this really fucks me up, do the suffering of all the people who left the site because of what they perceived as an attack by you know whom since you are a moderator, and especially during some days when they were feeling miserable and crapy, count? Will they ever be able to return to this site looking primarily for what the site is all about i.e. confort, support and answers? Or, as I am inclined to believe, will this whole charade go on and on; and people will still suffer and leave?
Isn't the stigma, discrimination and the pain that living with HIV entails enough? Do we need all of this? Now, you can tell me to shut the fuck up and I will. But, this time, though, I will do exactly the same thing some of people who were hurt right here in these forums, have done! And to make it clear for you, Andy, I was not aware that people were being bullied and felt hopeless until some weeks ago. You, the moderators, were aware of what's going on!
Do we want the same thing to happen with the so-called "newbies"? Not me. By the way, I was not the one who coined the "newbie" term.
Val
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P.S. That's my last post in this thread. I will hope only that the problem will be addressed and solved.
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do the suffering of all the people who left the site because of what they perceived as an attack by you know whom since you are a moderator, and especially during some days when they were feeling miserable and crapy, count?
And to make it clear for you, Andy, I was not aware that people were being bullied and felt hopeless until some weeks ago. You, the moderators, were aware of what's going on!
Val
I'm a moderator and I haven't a clue what/who you're talking about. We get people threatening to leave all the time and most of the time they reappear within a week or so, if not days or even hours. If we got rid of everyone who has been guilty of one time or another hurting someone else's feeling, this place would be a ghost town. All we can really do, unless someone gets over the top horrible, is to ask that people treat each other in the way they expect to be treated. If you want courtesy, you need to show courtesy. Be the change you wish to see.
This newbie/oldbie stuff is nothing less than devisive. Can we give it a rest, please?
Ann
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Jesus am *I* in the dark. I miss all the good shit.
Am I part of the clique? I sooooooooooo want to be cool.
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Here goes round #3
-josh
(or round 200000000 but who's counting)
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To quote someone from the past ..
"Can't we all just get along .. ?"
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To quote someone from the past ..
"Can't we all just get along .. ?"
i agree...thats what im talking about ;D ;D ;D
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Great post Val and very insightful comments by many.
Mikey
(who is not getting in the middle of this one)
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Yes it can be disturbing for some members to see others doing stupid jokes and finding aids hilarious. I'm one of them dealing with the disease by laughing at it with the other members that deal with it the same way. I think my posts have been very clear that I won't make a completely stupid joke to someone that is obviously suffering and not in that state of mind. There is a mix of both in those forums; I'd be sad if we separate the jokers from the others. I'm proud to get PMs from people who said "man you made me laugh today, thank you".
Milker.
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I'm actually trying to think of something to say that will earn me a Time Out cos I've been meaning to get my knackered little tushy to sleep for the past half an hour! ::)
Think I'd better just count lambs instead before they all disappear (well, its Easter and I'm in Greece - and many a lamb gets spit-roasted here at this time of year)
Kalinikta one and all!
---one lamb, two lambs, three lambs.....zzzzzzzzzzzzzzz---
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It is threads like this that caused me to leave this forum, because too many people here forget that we are all bound by our HIV infection. This is not an issue about how long or well you live with HIV, it is about the fact that we all have a virus that will kill us if it gets the chance. It is about supporting a place where all reasonable views are valid, no matter how disconcerting some may find them to be.
Yes, I am a dinosaur, but I long for the Jurassic Period of HIV. Yes we were dropping like flies, but I saw more love and compassion, even in the face of abject hopelessness, than I have seen displayed in these forums in a very long time. So many of you seem to concentrate on the delivery while you miss the message completely.
Of course I know the face of HIV today is different and I could not be happier, nor prouder because I contributed to that change. I know so much about HIV and the human experience in relation to it and that is what drew me to these forums many years ago, as somewhere to share our hopes and fears and to realize that while we may not always agree, there were never the vicious personal attacks that frequent these forums.
So many of you are so centered on telling others, why they are wrong, when you should be focusing on the experience they bring to the table. I want and need those for whom HIV is a manageable disease, because that is not the case for me and one can never have enough hope. I would hope that the existence of us long-term survivors would provide hope for those newly infected and I thought we were all in this together. But then I read a post like this, with all the "cliques" and other bullshit, it just is not worth it anymore.
Support used to mean that you listened as long as necessary to support those who came here for support. It used to mean that while the tempers may flare, the issue was always the focus of the topic and not attacks regarding the personal character of the poster. I am not taking sides, just telling you my take on the reality that has taken over these forums.
Sometimes I wonder if the HIV community will eventually segment into two factions, those for whom the meds work (and who have health insurance) and life is relatively easy and the second faction for those who don't fit in the first one. Rather than supporting our common bond, too many seek to just lash out at others and that will never serve to regain the "soul" that these forums used to contain.
For many of you, you have no idea what has been lost in these forums the past two years. You are allowing the "instant gratification" of these forums to numb you to the people behind the posts. You will never know the dozens of members who have left these forums, merely because their opinions were deemed as less than worthy.
Some of you also live a very good life and you have become numb to the reality of many people (not just Americans) who live with HIV daily, with little support from anywhere. You don't have to worry how your medical treatment nor drugs will be paid for, because you have insurance. You do not live at the whim of DC who could yank your safety net out from under you and has been doing just that for the past six years. Yet some of you seem so busy telling others to not "rain on your parade" that you totally miss the human misery that haunts these boards.
So many of you claim to know how being marginalized feels, so how is that so many still continue to marginalize the posters on these forums. I thought society already had marginalized us enough.
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It is threads like this that caused me to leave this forum, because too many people here forget that we are all bound by our HIV infection. This is not an issue about how long or well you live with HIV, it is about the fact that we all have a virus that will kill us if it gets the chance. It is about supporting a place where all reasonable views are valid, no matter how disconcerting some may find them to be.
For many of you, you have no idea what has been lost in these forums the past two years. You are allowing the "instant gratification" of these forums to numb you to the people behind the posts. You will never know the dozens of members who have left these forums, merely because their opinions were deemed as less than worthy.
I couldn't agree more Joe. Toward the end of year, I came to the realization, that I was going to posting less. I think I am going to start living up to that. I am just too frustrated by some of the crap that's going on. There are many here that don't realize as you have stated, what these forums were like a couple years ago.
I still need this place, But I will use it for information, and to share some information, when I am comfortable at doing so, which seems to be a lot less lately.
Perhaps they should create a forum for the " HIV Veterans", where at least it can be kept real.
Just my bare minimum thoughts-----Ray
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Support used to mean that you listened as long as necessary to support those who came here for support. It used to mean that while the tempers may flare, the issue was always the focus of the topic and not attacks regarding the personal character of the poster. I am not taking sides, just telling you my take on the reality that has taken over these forums.
Sometimes I wonder if the HIV community will eventually segment into two factions, those for whom the meds work (and who have health insurance) and life is relatively easy and the second faction for those who don't fit in the first one. Rather than supporting our common bond, too many seek to just lash out at others and that will never serve to regain the "soul" that these forums used to contain.
For many of you, you have no idea what has been lost in these forums the past two years. You are allowing the "instant gratification" of these forums to numb you to the people behind the posts. You will never know the dozens of members who have left these forums, merely because their opinions were deemed as less than worthy.
Joe
Your post was both a welcome thing to me and at the same time it produced a deep and real sense of sadness.
It was welcome because you took the time and made the effort to give these forums something thoughtful, heartfelt, and driven by a desire to bring the potential these forums should always strive for.
It was sad, because so many of your observations regarding the big picture of the transformation that has happened here, really hit home for me. I love all the new members, I welcome the additional insight and perspective, I hate the ego driven drama.
I don't know what the answer is. Or even if there is one.
I'm not typically a bitter person. As a long termer, I thrive on my good fortune, cause I know it could easily disappear tomorrow. But for today, while I'm feeling strong and healthy, I would rather invest my energy and time on giving support and understanding. But by the time I parse my words in an attempt to not become a target, consider the 2 or 3 various (obvious) factions that have emerged, and still try to convey something helpful. . . well it just isn't possible most times. For me, and this is only my diluded opinion, the reality of the forums as they currently exists leave me worn out from dodging the landmines and walking on egg shells.
Most times it just isn't worth it anymore. (I think that is what Ray was kind of referring to)
Not sure what the point of all this is, just my momentary random thoughts.
I will say this, while we can't go back to what was, hopefully, we can collectively commit to doing better.
Thanks buddy for giving me the chance to vent (albeit not fully) on where my head has been.
RAB
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I agree with Josh on that one: I always took the "I Just Tested Poz" forum to be for those in the immediate HOLY SHIT phase, not so much folks who have had the diagnosis for awhile. At what point does the "recent" / "newbie" / "just" expire? Just wondering. It may the last place this aging hen can grasp a "spring chicken" designation. ;D
WOW! You know that's a question that makes a me stop and think for a long time! In the full scope of this aren't we all always going to be 'newbies'? After all, we are each at a 'new' place with the virus that we have never been before, at least in my opinion.
Two thumbs up and thanks for giving me/us something to ponder!
Peace health and love,
Ody
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Maybe two years ago this website was a niche, I don't know. I welcome the new members, and remember that they are new members because they found out they are positive. It means different things, different feelings, for the newly infected.
I'm pretty new here, and I was very welcomed, and I really liked the diversity in here. You cannot expect a 20yo to understand all the experience of a 40 or 50yo, and you cannot expect a 50 yo to understand what it means to be a 20yo in 2007. I'm lucky enough to have real friends who span from 17yo to 83yo. I'm in the middle right now and I love it. I wouldn't stay in this forum if it was not for people like bear and moffie as well as aupoint and al and everything in between.
Milker.
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For people that get "offended", "hurt", or "leave the forum" because of advice or comments from other members i think everyone needs to realize not to take everything that everyone says so seriously.... If you put 100 different people in a room together you are bound to have some that you bond closely with and others that you cant stand....This is what happens because we come from different places, different backgrounds, and different upbringings....Advice that works for me may not work for someone else....while someone might find me comforting, others will find me annoying....
This is to be expected and we should just understand and accept that EVERYONE on this forum is different and we all have diffrent ways of coping with life in general.....so "cliques" are to be expected as some people think similar and others we just dont get..... This is why the internet is a great tool and also why it can be a problem....it can either bring us together or make us feel more alone......We just need to understand we all come from different worlds and after reading posts and getting to know people we will also learn whos advice to take to heart and whos needs to be thrown out the window.....
Everyone has a different opinion, different view, different life and everyone can bring valuable advice to the forum but we need to accept that we all are different and this difference is to be expected in such a diverse group.....
Anyone that posts here needs to understand this before taking anything to heart and feeling offended.....
im off to bed....:-D
-josh
(who thinks maybe nobody should pay attention to this message because he is a bit drunk and doesnt even know why he is online....damn bad habbit)
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Scottt and Koi (Rob), my darlings!
Adversity is the first path to truth. ~Lord Byron
(http://Adversity is the first path to truth. ~Lord Byron)
Just a little word of confort for both of you, and since your posts and friendly attitudes inspired me throughout this week, I wanted to send you a little something for the week end in beautiful California. And even though I know that you're gonna kill me for this, I don't really care, and here goes, then!
Loving you
http://www.youtube.com/watch?v=XJWJT_jJeag&mode=related&search= (http://www.youtube.com/watch?v=XJWJT_jJeag&mode=related&search=)
And this is official. I hope you will honour me with your presence whenever you come to beautiful Europe. My place will always be yours as well. And Al's, Strongguy and all the others...
Love,
Val
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it seems to me that those who protest the loudest about cliques have formed their very own, quite vocal 'clique' ala josh's post.
Bailey - who wonders what clique he is in
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Funny how you can't distinguish between two simple words in your language: "Clique" and "Solidarity". Sorry, the word "clique" actually is French and I understand that it might not be well-understood by yourself.
However, to show support and undestanding for someone is not the same as to form a clique! The word clique, in French, usually has a negative meaning regardless of who its members are.
It means..."un groupe d'individus peu recommandables " (péjoratif)
To show support and solidarity to someone, on the the other hand, is an almost-but-not-quite compendium of understanding, caring, unanimity, trustworthiness, concern and esprit de corps camaraderie. You see, the list could go on and on and on!
Val
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Edited to add the two words: clique and solidarity
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Matty the Damned prefers the word 'cabal'.
MtD
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Funny how you can't distinguish between two simple words in your language: "Clique" and "Solidarity". Sorry, the word "clique" actually is French and I understand that it might not be well-understood by yourself.
gee, thanks for calling me stupid.
Why are 'older members' considered a cllique when a 'newer' specific group of members, fitting the same criteria as seemingly applied to the older ones is called solidarity.
Perhaps I am stupid. ::)
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Some of us have made friends, that we associate with on the forums, phone, emails, IM, PM and or visits. If that is a clique, then I'll be damned if I don't belong to one the largest ones here on the forums. I’m proud of the friendships I’ve made. There is nothing special anyone has to do in making friends.
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Bailey - who wonders what clique he is in
lol i dont know what cique im in actually im still fairly new here and just recently began posting....i just say what i feel :-D....many member seem to have similar attitudes and similar mindsets which is what makes it seem like a "clique" but in many cases the two that always agree and defend each other actually "get" each other and have similar traits but every once in a while you will still see them clash (as everyone does in the real wold)
-josh
(who hopes to be a social butterfly and get along with everyone as he always has without "trying" to get along with everyone lol ;))
:-* :-* :-*
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Hey, guys!
Just thought I'd drop you a little note and wish you all a pleasant, delightful Saturday!
"Most of us, swimming against the tide of troubles the world knows nothing about, need only a bit of praise and encouragement --- and we will make the goal."
Jerome Fleishman
Val
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P.S. Josh, thanks for the brilliant comments --- as usual. Enjoy your day!
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Funny how you can't distinguish between two simple words in your language: "Clique" and "Solidarity". Sorry, the word "clique" actually is French and I understand that it might not be well-understood by yourself.
However, to show support and undestanding for someone is not the same as to form a clique! The word clique, in French, usually has a negative meaning regardless of who its members are.
It means..."un groupe d'individus peu recommandables " (péjoratif)
To show support and solidarity to someone, on the the other hand, is an almost-but-not-quite compendium of understanding, caring, unanimity, trustworthiness, concern and esprit de corps camaraderie. You see, the list could go on and on and on!
Val
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Edited to add the two words: clique and solidarity
Val,
I'm French and know what a "clique" means in French, but I'm not sure your explanation made any sense to non-french speaking crowds. A clique could be translated in english as being in a group that thinks is over all because of their beliefs. A clique is merely a group that thinks they are better than everyone that don't believe in their specific issue.
Milker.
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Thanks for the explanation, hon! So, have you reached any conclusion about "that" subject discussed to such lengths in your "I've been naughty" thread? Note that I prefer "naughty" to "bad"!
Hope everything will be alright with you and whenever you feel the need to chat, PM me on!
Love,
Val
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Thanks for the explanation, hon! So, have you reached any conclusion about "that" subject discussed to such lengths in your "I've been naughty" thread? Note that I prefer "naughty" to "bad"!
Hope everything will be alright with you and whenever you feel the need to chat, PM me on!
Love,
Val
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Val, for reasons known only to you and your friends, you have attempted to destroy this forum with your diviseveness, your antagonism, and your personal attacks. To date, the only "clique" I have seen are the people who, despite their valid and honest viral concerns, are still behaving like internet trolls. And while I shudder at the thought of banning members who actually ARE HIV positive (as opposed to, say, denialists and religious nutjobs) I would rather see that happen than have this place degenerate into the chaos that, bewilderingly, you seem to want.
This has gone far beyond a personal thing you have with Moffie. It's basically become you and your small cabal versus this entire forum. I doubt seriously this fact is lost on the moderators. And it has nothing to do with favorites or cliques at this point. It's abuse of a support forum for a serious illness. Plain and simple.
I will, no doubt, be on your hit list for saying this. But you know something? I'm ok with that.
These last few months you have proven to be an abusive, passive-aggressive and disruptive poster whose agenda, besides intimidating others, remains unclear. But I am onto you.
And seeing as how I am generally the last to know anything, I can only infer that this is neither news nor a shock to anyone else.
I am sorry you did not choose to join a community, rather to disrupt it with your friends. And I am frustrated that it has taken the moderators this long to take action against this sabotage. But I suspect that Poz.com will not take kindly to having their forum deccimated by mean-spirited and vindictive posters, regardless of HIV status. At the end of the day, the bottom line, their advertising dollars, might actually help to create a safe place here, where there used to be one.
It is, after all, in their best interests. Of course, it is in yours as well. Maybe someday you will see beyond your rage.
I hope you do.
Believe it or not, this is actually an olive branch, for you to take or leave.
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This has been an emotional roller coaster. My experience has been that email is not a good way to resolve conflict, so I imagine the same issues here. We are missing the face-to-face communication stuff.
Sometimes it is good to take a step back and look at the context as well as the players. There ARE dynamics of power at work here, as there are everywhere. There are also needs and experiences specific to where we are in this flight of life. And there are emotions and sensitivities. I am beginning to get a sense of different people and an understanding.
We all have specific needs common to our experience.
I happen to be a "teenbie". Not a newbie or an oldbie.
Drew
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You sound very aggressive and angry, not me. I simply addressed a growing people here in the forums. Now, will we sit and wait until it degenerates any further? Or, as reasonably assumed by most folks who took the time to reply, is this a valid issue/point?
All one has to do is look at all the replies -- especially by the so-called "newbies" -- to reach a conclusion.
I do not read blogs, but have been told that you are very sick. Is that not a reason for you to slow down and do everything with moderation? Why this outbreak of anger and aggression towards me? Again, I am simply addressing a problem that has been debated time and again in these forums, without any conclusive and satisfactory ending. Apparently the subject is not a worry for you. Which is fine!
You see, Jonathan, I am a very lucky fellow. I have all the money I could ever desire in my life, am happily married for more than 23 years, I live in a palace in paradise. However, I am far from being selfish. I will come to support any human being who is in distress. No matter what the price for me! I only come to these forums to help, give confort, help and solidarity. Are you able to say the same thing?
Wishing you a speedy recovery (I am sincere here!) and a calm, serene Saturday. I will not respond to your aggression with aggressions. Just do not exaggerate!
Val
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P.S. I do defend all kinds of suffering in this world --- especially the whales. Why shouldn't I address a growing problem that was brought to me by several folks who, believe it or not, are suffering and /or have suffered immensely? I wouldn't be myself if I didn't take any action.
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Oops, I got in the line of fire.
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This has been an emotional roller coaster. My experience has been that email is not a good way to resolve conflict, so I imagine the same issues here. We are missing the face-to-face communication stuff.
Sometimes it is good to take a step back and look at the context as well as the players. There ARE dynamics of power at work here, as there are everywhere. There are also needs and experiences specific to where we are in this flight of life. And there are emotions and sensitivities. I am beginning to get a sense of different people and an understanding.
We all have specific needs common to our experience.
I happen to be a "teenbie". Not a newbie or an oldbie.
Drew
Drew where have you been ! i missed you!
Milker.
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You sound very aggressive and angry, not me. I simply addressed a growing people here in the forums. Now, will we sit and wait until it degenerates any further? Or, as reasonably assumed by most folks who took the time to reply, is this a valid issue/point?
All one has to do is look at all the replies -- especially by the so-called "newbies" -- to reach a conclusion.
I do not read blogs, but have been told that you are very sick. Is that not a reason for you to slow down and do everything with moderation? Why this outbreak of anger and aggression towards me? Again, I am simply addressing a problem that has been debated time and again in these forums, without any conclusive and satisfactory ending. Apparently the subject is not a worry for you. Which is fine!
You see, Jonathan, I am a very lucky fellow. I have all the money I could ever desire in my life, am happily married for more than 23 years, I live in a palace in paradise. However, I am far from being selfish. I will come to support any human being who is in distress. No matter what the price for me! I only come to these forums to help, give confort, help and solidarity. Are you able to say the same thing?
Wishing you a speedy recovery (I am sincere here!) and a calm, serene Saturday. I will not respond to your aggression with aggressions. Just do not exaggerate!
Val
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P.S. I do defend all kinds of suffering in this world --- especially the whales. Why shouldn't I address a growing problem that was brought to me by several folks who, believe it or not, are suffering and /or have suffered immensely? I wouldn't be myself if I didn't take any action.
Val, I think you're a good man in your heart, but you don't seem to realize that you're upsetting people with some of your posts.
Milker.
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Val, why not take a short breather from the forums? I just finished reading your post #77 and I truly think you should take a breather. Remember, after a 7-day TO, the next one is a 30-day TO
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Thanks guys!
I appreciate your concerns and will follow your advices. It does mean a lot to me! Merci beaucoup, mes cocos! ;)
Now, to give Jonathan an impression of what is going on in these forums, I will post a thread that speaks for itself. In this thread, people come out and finally express themselves regardless of the fact that they were very much "afraid" of being criticized and ridiculed by persons like...Jonathan and the oterhs! They told me this on the phone, they PMed me, etc. At a certain point, I replied to some of them "online" that instead of sending me PMs, they should come out and speak their minds...
The thread started by Milker "The Naughty thread" as I call it, is a perfect example of things to come in these forums. Granted Milker is French and as such "il n'a pas froid aux yeux" i.e. speaks up/come clean and is bold more than other folks. And I love and admire him more than he'll ever know just for being himself! However, look at the ensuing situation... Even the so-called "newbies" disagreed with him! Now, not the all the newly-infected in these forums are French -- thank goodness for that! And not every newly-infected in these boards is as bold and unafraid! Should their voices be silenced? Never, ever did I imply that our voices, the "oldbies' voices (Yes, I am an "oldbie" whether you like it or not) advices and experiences did not serve a major purpose in these forums. Neither did any of the so-called "newbies"!
Here's one of the examples of people speaking their minds...
http://forums.poz.com/index.php?topic=10457.0 (http://forums.poz.com/index.php?topic=10457.0)
And Jonathan, your assumptions are nothing more than that: "assumptions". If in doubt, look at the replies one by one and see what the majority think! Usually the majority rulez...
And if this thread does not convince you the so-called "oldbies" that AIDS, for these "New Kids on the Block, " is not ONLY about death and depressive reminders, well, I indeed give up!
I give up and will tell you at the same time that this topic will come up again somewhere. You'd better get used to them -- the so-called "newbies"! And "yes", I will thank Andy online for telling me that the "newbie" versus "oldbie" thing was a mistake. He is right, as usual, and I should have known better.
Edited to add Milker's "naughty" thread as an example of future posts.
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Val, I think you're a good man in your heart, but you don't seem to realize that you're upsetting people with some of your posts.
Milker.
Milker, I believe that Val, at this juncture, knows precisely what he is doing. I wish I had your faith in humanity though. I don't. Val knows whom he upsets. He started this thread precisely to accomplish that. As with many threads, it was intended as a bitch-slap to a specific member, and devoid of any real altruism.
And sadly, this last exchange has been predictable. It really is going to come down to an either or. There is no room in this forum for non supportive and rageful posting AND a safe haven for those living with and affected by HIV.
I am heartened by the recent aggressive stance shown by the moderators. I hope it continues until this place welcomes discussion and disclosure, instead of punishing it with vitriol (even vitriol thinly guised as affection of help). LIke I said earlier, I am the last one to suspect devious intent. Therefore, it can not possibly have escaped the attention of others. For the longest time, I tried to play it off as a translation difficulty.
I am certain that this is not the case.
I do not regret reaching out. I regret that it met with such blase resistance and poorly considered verbiage.
Call me optimistic, but I do think that this forum will survive those who have seen fit to provide little beyond discord and rage. Sickeningly, often discord and rage disguised as humor or distraction or even assistance.
Sadder still, were we to put them on ignore, they would go unreported. And people reading these forums from the outside would assume that this behaviour is encouraged.
This forum, obviously, is not for everyone. Not even everyone with HIV. And I know that a person's viral status gives moderators great pause when considering disciplinary action. As it should. But there is no excuse for the pattern of sabotage and belittlement and passive-aggressive behavior here. Explanations? sure. From dementia to depression to drug/alcohol abuse to a host of other issues. Issues that warrant discussion.
But explanations do not suffice when the offending party wages war on the forum's credibility and integrity.
This is a support forum for HIV infected people. when it loses the capacity to help, to be a safe haven, it loses credibility. When it loses scientific accuracy, it loses credibility. When it allows cliques to control it outside the boundaries of it's stated mission, it loses credibility.
I really do feel badly for those whose lives are so forfeit of meaning that they need to hurt others in order to feel better about themselves. Particularly when their targets are the weak and the sick in a forum whose members are rife with that element.
Granted, it's easy pickings. And I am certainly not immune to flamebaiting. But I am still strong enough to write about it, from time to time. Still strong enough to defend weaker people, when I see them being victimized. Strong enough to believe in a concept that seems to have been a little lost as of late on these forums.
You wonder why people like Shawn and Lisa and Mark and Regan do not post here? When their blogs are so successful? Maybe it's because there is a real problem with the forums, and getting involved here is political suicide for those who actually want a lucrative relationship with POZ. Also, maybe their lives are rich enough, and full enough, so that this distraction is one more struggle they do not need to undertake.
I think I put that ship to sail a while back. I regret that. God/dess knows my financial situation regrets it. But I still think that sometimes you have to do the right thing, even though it hurts, even though it demands sacrifice. And defending this place seems to be the right thing.
especially now. Because if I can get sick, in a land of plenty and a world of opportunity, then no one is immune to the ravages of AIDS. If I can experience profound weakness and more profound poverty, than anyone can. If I can die, then so can any of us. Because though I was infected in 1993, I was still around when HAART became available. Side effects and simple fatigue have claimed my strength in that regard. I find myself more and more in need of a support forum where there is no bullying and no flamebaiting and no false pretense.
I know I may be asking too much. And time will tell if that's possible.
But I know what I need, and I am not ashamed to ask for it. What I need here is for Val and anyone else who has disruptive intent to reconsider their targets. Even reconsider their participation if amity is impossible.
After all, Val is financially wealthy and socially connected and asymptomatic, right? What a wonderful life. One would think he would wish to spread that warmth around the globe, instead of hurting those who cannot even rise from their wheelchairs and beds to do battle.
This whole patch of ugly has made me very sad. Not for the forums, really. Just for humanity in general.
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Thank you, Alex and thank you, Milker. I really don't see why have I hurt Jonathan by stating some personal things. However, I do accept the blame for being naïf. And although he just stated plainly what his thoughts are about me, all the advices I've given to hundreds of forum members in distress, and all the confort... I will apologize to him publicly.
I have never been afraid of apologies. And never will. Sorry, Jonathan, for upsetting you so much! It was far from being the purpose of my reply to you. Again, I seriously and sincerely hope you will get better soon, and wish you a pleasant and tranquil Saturday. I know I need it and am about to guess that so do you!
Val
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Val and Jonathan, I don't see any likely immediate danger of either of you changing what one thinks of the other.
I don't want to see the exchanges continued here or in any other thread, whether it's a new or already existant one.
It stops here and now.
I'm leaving the thread open in case anyone has further comments on the original subject of the thread.
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Here's a thought: Let's all stop trying to be "right" all the time.
What I have seen happen at times here is that people belittle or negate someone else's reality. I've seen some write about how their life with HIV is "manageable" and someone else either states how HIV is a horrible and fatal disease (I think we all know this to be true) or that they are living with rose colored glasses. On the flip side, someone writes about the horrible struggle they are living with and others jump in and attack for being all doom and gloom. There is plenty bad about some attacks from both "sides" -- and I find it all unnecessary, because each of our realities is true for us. Just because I am CURRENTLY having an OK time dealing with my virus, doesn't mean someone else is wrong if they are not. That, I think, is the crux of the problem here. It is not really a "newbie"/"oldbie" issue. I know newly infected people who are having a horrible time and I know people who have been infected for over 20 years who are cruising along just fine.
Here's the important point, in my opinion. While we are tied together with the same virus, we all have unique journeys in living with it. If we remember to state our own realities and offer support to others, perhaps we can get past the need to be having the "one true and correct" journey with this virus. We are individuals, so let's learn and gain hope from the different experiences and offer support where needed.
Hugs,
Mike
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As far as the original subject of the thread goes, I stand by my first impression that this was a bitch slap disguised as a matter to be debated. As far as the guise goes, it makes me sigh.
What am I? Newbie or oldbie? Been infected 7 years, diagnosed 4+ years, still asymptomatic (I think), no meds yet. Who gives a hoot? I hate being pigeon-holed at the best of times. Last I checked I was female and Eurasian!
I have MANY hiv+ friend now, on and off the forums and for that I am truly thankful. I don't believe I've ever belonged to a clique (and if I did, no one ever informed me!), so I'm in total agreement with what Rod says here:
Some of us have made friends, that we associate with on the forums, phone, emails, IM, PM and or visits. If that is a clique, then I'll be damned if I don't belong to one the largest ones here on the forums. I’m proud of the friendships I’ve made. There is nothing special anyone has to do in making friends.
And as far as this comment goes:
Usually the majority rulez...
Experience has taught me and continues to teach me that although the majority may often indeed rule, it does not necessarily make them correct.
Oh and, having read through all 85 (sorry 86 now) posts here, my last thought on the subject matter:
I think it sucks.
Just my humble opinion, for what it's worth (which is probably nada).
Melia
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Here's a thought: Let's all stop trying to be "right" all the time.
What I have seen happen at times here is that people belittle or negate someone else's reality. I've seen some write about how their life with HIV is "manageable" and someone else either states how HIV is a horrible and fatal disease (I think we all know this to be true) or that they are living with rose colored glasses. On the flip side, someone writes about the horrible struggle they are living with and others jump in and attack for being all doom and gloom. There is plenty bad about some attacks from both "sides" -- and I find it all unnecessary, because each of our realities is true for us. Just because I am CURRENTLY having an OK time dealing with my virus, doesn't mean someone else is wrong if they are not. That, I think, is the crux of the problem here. It is not really a "newbie"/"oldbie" issue. I know newly infected people who are having a horrible time and I know people who have been infected for over 20 years who are cruising along just fine.
Here's the important point, in my opinion. While we are tied together with the same virus, we all have unique journeys in living with it. If we remember to state our own realities and offer support to others, perhaps we can get past the need to be having the "one true and correct" journey with this virus. We are individuals, so let's learn and gain hope from the different experiences and offer support where needed.
Hugs,
Mike
QFE very nice post
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There is a lot of wisdom and insight here, as well as hurt, bruised egos and bitter feelings. Let's talk ownership of the way we use words as weapons (or images) OK??!!!! Let's be honest with ourselves when our angry and intelligence collides to form a smoldering ember at the heart of a spear... we may loft as someone. Let's take responsibility for each other and for a safe place here home. Let's hold each other accountable, but not always in a public way with the rallying cry of warfare, where we destroy THE ENTIRE VILLAGE and all the children...
I want to think about the fluidity of life, about the change and the oscillation of life and death. Sometimes HIV is manageable for days, weeks, years and decades, in other contexts it maims and kills its prey. IT IS BOTH MANAGEABLE AND NOT, depending on who, what, where, why and how... such is the change.
Over and over we hear posts from people asking the question "am I a newby or an oldbie"? We can't fit the flavours of our lives in little candy coloured ships of this and that.
Death runs swift on stealthy feet, be joy behind the clouds little lamb.
Luv and Saturday,
Drew
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-- if a woman complains about the issues raised by gay men in this part of the forum, I would certainly direct them to the women's section.
Where will you direct a straight man who complains about gay male issues raised in this forum? Living With HIV is for everyone, whether infected or affected by HIV, regardless of gender, race, sexual orientation, and all that. The majority of members may be gay men but AIDSMEDS is for everyone.
I thought the Women's Forum is for women to discuss issues candidly which in typical male-dominated social structures are inhibited.
SD
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Where will you direct a straight man who complains about gay male issues raised in this forum? SD
Well, that's a good question actually. I think if a straight male is uncomfortable with a specific thread in LIVING WITH, then it might be in his best interest to avoid that thread.
If it seemed that I was implying that AIDSMEDS was not for everyone, I was misstating. Though I am a little suprised that anyone would take umbrage to my comment.
I simply said that, now that we DO have a safe place for women's issues, I would direct someone uncomfortable in a forum where men's (particularly gay men's) issues predominate have a safe haven.
Same with the Long Term Survivors forum. Safe havens for those discussions endemic to a specific group (or groups), where fighting for the right to have our viewpoints recognized as valid is not an energy-draining part of the process.
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If it seemed that I was implying that AIDSMEDS was not for everyone, I was misstating. Though I am a little suprised that anyone would take umbrage to my comment.
I sure didn't take umbrage nor believe you implied AIDSMEDS is just for us homos. It struck me while reading the comment you probably inadvertently forgot heterosexual males (all 3 or 4 of them, it seems) who might also be offended by one of the more graphic threads I've read.
If that situation came up and a person complained I would, like you, suggest he (or she) not read the post after it is clear the subject is not to their liking. That is a reasonable general rule for all of us.
SD
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Yawn. Get a life people
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You know, I think many of us are at fault for poo-poo'ing the knowledge of the oldies and also of giving doomsday prophecy to the newly diagnosed. It's like that in life. Parents and grandparents tell their kids (and grand kids) that 'they'll understand when they're older'. Hell, even I've done that on occasion. Some of us are green and unseasoned and some of us are old and jaded. It's nothing more, nothing less.
If this were a forum on high performance cars, I guarantee there would be the debate over muscle cars and Detroit Iron vs the Ricers. Which is better? Neither, actually. But there is a lot of information to be learned from both generations. There is experience in living with this crap called HIV / AIDS that comes from the 'old timers' to be learned from and enthusiasm and hope from the newbies, along with new drugs and treatments that were completely unavailable a decade or two ago.
Likely, I'll never lose hundreds or even 10's of my peers (those recently diagnosed) die from complications. These new treatments are almost a pleasure compared to what I read from what was available in the late 80's and early 90's, and you won't generally hear me bitch about what a bad time I'm having from the meds. I know my problems couldn't hold a candle to what others have and are experiencing.
I think what we all need to remember that experiences are just that. They are not guarantees. I could be sick tomorrow from some unexpected OI that would kill me, or I might not. These 'old timers' survived when others of the same period did not? Why? Who knows. All I know is that I learn something from almost every person on these forums at some time and in some way. If nothing else, it helps keep me grounded somewhere between despair and total bliss of denial.
I didn't see this as an attack against Tim, but I've been out of town for a few days and haven't caught up. I will say that I met Tim in Montreal. He's older than me, for sure, but I didn't see him as an 'old man'. I saw him as an older guy riding around on a motorized (what do you call it, tricycle? I'm not sure) with his HighLighter (Lifer) high-lighting pen with him being funny as hell. I also met Joe and Stephen, Andy, Jonathan, Rocky, Lisa, Alan, and others who've been living with this shit for so much longer than me. I guess I've gained a certain respect for them and how they handle themselves after the crap they've been through. I can only hope my trip with HIV / AIDS is a bit easier, but mostly that I can still handle myself with courage and with an interest in helping the newly diagnosed after as long as they've been living with it. I can easily excuse an occasional gripe about how the newbies don't listen; hell, often we don't. It would be a big mistake to miss out on the wealth of information and support they offer, though.
It's so easy to form an opinion when we don't actually know a person or have talked to them. For me, there's an acceptance of others that comes from meeting and gaining appreciation for those folks and what they've been through. I'm sure that some, who haven't met other member in real life, won't experience that. This is partially why the AMG in Montreal was so meaningful to me.
Ok, enough rambling. I see an age generation gap as well as a gap in time living with this virus. Either way, we just need to close the gap some and show a bit more respect towards others. That would go a long way towards making this a truly inclusive forum.
David