Rounds: HIV History, Why It Matters

[Joe K]

There is value in reciting the trials that accompanied the onset of AIDS, because without it as context, there is so much that cannot be understood.

When I read the above, I realized that many newer members have little history regarding the HIV Community as we enter the 21st Century. The HIV Community has a long, proud and painful history and periodically I feel compelled to share some of that history. A history, paved with the blood of thousands of souls, who laid the foundations for all that we enjoy in the HIV Community today.

The following is a rewrite of a post, on why I share my HIV history and why I post on these forums and elsewhere. The history presented within will always be relevant to the HIV Community.

Rounds

My name is Joe, the year is 1985, the city is Detroit and I am about to start my “rounds”.  I enter the hospital and proceed to the floor, called “the morgue”.  The walls are a putrid green with orange doors as the structure is decades old and it reminds you more of a prison than a hospital ward.  There is little joy here, few people smile and you hear no laughter.  You expect to see Nurse Ratchet round the corner at any moment.

A smell permeates the floor, very complex in composition, however essentially unidentifiable, as individual smells.  There is one smell though, that is undeniable and it is the first smell that hits you every time you enter this floor.  The smell is of death because this is the AIDS floor, where most of the patients have come to find some comfort, as they proceed to their demise.  For too many people they have nowhere else to go except here.

This is where HIV positive people, now ravaged by AIDS, come to die.

As I walk the floor the signs of disease and death are virtually everywhere.  Because of over-crowding, most rooms have two patients, or more and it is rare to see visitors.  Every door contains warning signs that range from fluid precautions to food restrictions, to medicine interactions, or oxygen in use.  Perhaps the coldest sign is the one requiring that anyone wishing to enter must wear a gown, shoe covers, cap, mask and gloves.

As if these poor souls did not have enough to deal with, they had to endure treatment as if they were lepers.  It is almost impossible to console someone when you are unable to touch him or her physically.  Fear permeates the floor and one cannot help to notice the dearth of nurses or hospital workers, nor the silence that attends so much hurt and misery.

The fear is evident by the food trays, linens and sometimes even a cup or two of medications, in front of the door.  These are the early days of AIDS and we really did not understand the illness that was dropping our friends and family in droves.  For some of our friends and family, when they became too ill, they often came here to die.  That death was inevitable and many died in such agony that I could no longer bear to remember.

Death surrounds you and even amongst the great suffering, you can understand the fears of the attending staff.  It is very normal to fear what we do not understand, especially when it is an actual illness, which at the time would certainly kill you.  You can sympathize with self-preservation on their part, because in the end, it came down to their risking their life for that of a stranger.

That fear is what drove many of us to come and attend to our fallen comrades.  For most of them their family and friends had long deserted them and so many of us from that time, felt a moral duty to try to let no one die alone.  It was the time of AIDS Buddies and AIDS candlelight Vigils.  A time when food boxes, clothes closets, meals on wheels and group dinners, were all that kept us alive.  When HIV support groups began and just about anything else that we could have to support each other and to ease the doomed ones with their passing.  It was a time when possibly the most depraved humor reigned, epitomized in T-Cell Naming Parties.

Faithfully I would pause in front of each door and don the required garb.  How sad to enter a room and see the patients in their horrific state and in need of simple compassion.  Upon seeing some of them, you could understand why the food remained outside.  Many had such severe OIs, that swallowing was all but impossible.  Some had raging fevers, horrific KS lesions and others were drowning in fluid that had built up in their lungs due to PCP.  Almost all of them had some type of IV, shunt, pick-line, ventilator; catheter or whatever else that may ease their suffering, as prolonging such a life was never really an option.

I would move from room to room and do whatever the patient may want, which often involved just touching them (no gloves) and listening.  They were the forgotten souls, cast aside by society and sent here to die.  Surely, they deserved better than this, but this was often all that we could provide.  These were the days before the ASOs existed, when society turned its back on the HIV community.  Churches would forbid our having memorial services, while funeral homes refused to either embalm pos people or allow closed casket memorials.

It was a time that birthed the AIDS Vigil, as a way for us to honor multiple deaths when we found a church that would permit our services.  We held these services, wherever we could find a space, because all that really mattered was that we honored our dead and just maybe, it could provide an opportunity for us to find some type of closure.  Believe me when I tell you how hard it is to find closure for hundreds of your friends’ deaths.

For those living with HIV, the prospects were rather dim as the only support systems that existed were essentially volunteer groups with very limited resources.  There were no medications to treat HIV disease.  There was little government money for HIV services and what little existed, was quickly consumed by the core services that most poz people needed at that time.

Those churches that refused to accept dead poz people were certainly not going to help living ones.  Therefore, our resources were our members and for those of us who were surviving, we accepted the horrible truth that if we did not watch over each other, there would be no one else to do it for us.

So I would move from room to room, feed some patients, assist with personal hygiene, maybe help them take a walk, fluff a pillow or whatever, just to stay busy.  Too many times, I remember entering a room and upon seeing the patient, especially when they were sleeping, I would sit and silently cry.  Not only did I cry for what I was witnessing, I cried as I faced a reality that could very well become mine someday. I cried because I felt helpless in the onslaught.

I would cry for those who could not or because of a hardened heart, would not.  I cried knowing that my actions were no more than the proverbial finger in the dike, as all I could do was try to ease the suffering and watch them fade away, one at a time.  It was a time that we must always remember, for those who have gone before us, as they instilled a sense of real honor and support into legions of poz people.

It was a very difficult time to be alive and on some days even harder because I was not dying, at least not literally.  I was perplexed on how I survived, yet somehow I found the strength to persevere and in doing so, I have thousands of wonderful memories of friends who showed real valor up to the end.  So many of them had nurtured and supported the early AIDS movement and we all did what we had to do.  At that time, it would be unthinkable to do any less that you could, so we volunteered for everything from AIDS Buddies and rounds to clinical trials.

To some of you this may all seem to be surreal, nevertheless these were some of the early days of HIV.  It was a time when we each found our calling and if your health allowed it, you just had to give back to your friends and community.  It was a time of immeasurable horror, punctuated by remarkable hope.

A time that removed almost an entire generation of gay men, who would have served as true role models for both the Gay and HIV communities and as friends, family and lovers.  Thousands upon thousands of souls taken from us, leaving immense voids and we had no idea of what we had done to invite such a plague.  I do not imagine we will ever understand. 

A time that challenged so many of us, a time when rounds were really just a part of a day in the life, of far too many people, who sought to do anything, rather than dwell on the death and dying that surrounded us.  A time that remains forever seared into the conscience of anyone who lived through it.  A time that I still hold dear, because it involves people that I loved, who are now gone. Many painful memories remain and that is a burden I will carry to my grave.

I share my life, so forum readers can begin to understand why some of us Long Term Survivors (LTS) insist on sharing this history, because we have witnessed where many of you may be going.  Over the last few decades, we have continued to bury people who were compliant with EVERY FACET of their HIV management, except they died anyway.  We have seen people who stop all treatment and somehow dodge the Grim Reaper for years.  We have watched as people who seemed perfectly healthy, would experience rapidly declining health and die unexpectedly.  We have supported friends, who have decided to stop all meds to attain a reasonable quality of life, even when we knew that such a decision would result in their death.

We have allowed, supported and celebrated the passing of scores to HIV.  It never becomes any easier as the hundredth death hurts just as badly as the first one.  It is impossible to have witnessed so much of the horrors of HIV, in the early days and not to have been inspired, to do all that is within your power to help those who come after you.

Therefore, when I share something or give some advice, my only goal is to offer support and maybe ease the suffering of others.  I got my positive results, from a nurse with the Red Cross.  After scolding me for donating "tainted blood", she handed me, a card for the Henry Ford Hospital infectious disease clinic and showed me the door.  That is what constituted HIV test counseling at the time.  Advances in HIV treatment and the Internet have changed all of this, mostly for the good, except there remains a true lack of historical perspective concerning HIV and our present reality.

Without history as a guide, people think that the current public HIV programs will always be there.  I would not count on it.  We fought long and hard for everything that we have concerning HIV services however, it can all disappear by a simple vote of Congress.  When I complain about administrative and political situations, it is because I know what our government and many of our citizens are capable of allowing, as I have witnessed it.  It took Ronald Reagan almost seven years into his presidency before he even uttered the word “AIDS” and his lack of concern has been devastating to the HIV community ever since.  Try to imagine where we might be today, if we had the seven years of true research that was lost by an uncaring president and disinterested public.

It is shortsighted to assume anything and like it or not, we pozzies are a different breed.  25 years has confirmed that if we do not take care of our own, few others will care.  Too many of our ASOs have been compromised, through corruption, or are being forced to chase federal dollars, which often skew services to what Washington expects you to provide, rather than the real need of your particular area.  It is like whoring yourself just to remain open and in Fort Lauderdale, there was a local ASO, its money embezzled, that simply closed the doors, dumping 3,000 pozzies onto the streets to fend for themselves.

I could go on, but you surely get my drift.  I remain involved with the HIV community because I still believe in how important it is, for the newly infected, to meet LTS like me.  How different might many of our lives have been, if we had some LTS of our own back in the 80s?  If we had someone who could have warned so many of us about the dangerous drugs or false treatment hopes, however those people do exist today.

I share my history because it does repeat concerning HIV; we still have the same arguments even though our understanding and treatment options have exploded.  Sadly, some things never change and there are times when I will react as my history indicates I should, I may even appear extreme in some of my views, yet none of it comes with any malice.  I choose to share my life and views, because even in this age of HIV treatment, issues remain that can often be helped by a historical perspective.  My main goal is to provide “food for thought”, to get you to think and if I can share something that helps another, that to me is reward in itself, even if you may not like the way I say it.

I truly believe in all of us sharing what we remember, because we do not want the pozzies of today to ignore the lessons from our history.  You are not the first, nor the last, to become HIV positive, try a new drug, experience a HIV caused illness, have no side effects, or have your meds fail, as it has been happening for decades.  I will never try to tell you how to live, I simply wish to share my history and views.

History matters, because knowledge is power.

[Realist]

Joe,

You have the wonderful habit of opening posts on here that are understated but insightful, that are compassionate but very realistic and that make many of us stop and think.

At 28 years old I simply wasn't around in the early days and in truth I am likely to never experience anything like those days. I wondered in the earliest days after diagnosis when I read and read and read, what would I have done? Would I have had the strength to support those who had none? Would I have stood up or sat back? What should I be doing now? What does the community need from me? What do I need from the community?

I haven't found these answers, and in part I never will, but this post has reminded me of why I joined the forums - to learn, to support and be supported but in the most part, to take my place in the community and contribute in some minor way if I could (still working on that!).

[wtfimpoz]

Adap is circling the toilet and I can tell you as a newly diagnosed person, most ASO personnell are pretty upfront about the fact that it won't be there when we need it.  A friend of a friend just blew his head off after testing positive, trust me, the stigma is still pretty fucking strong.  The stigma is so excessive, even my pozzie friends don't know I have it.  

Spare me the "I'm deeply insulted and I'm going to the LTS forum and you shouldn't post here because I don't agree with what you say and it makes it tough for me to share my feelings" bullshit.  Trust me, you're not the only one on here who thinks its tough to share their feelings because of the way people react.  Instead, tell me what the point of your post was.  Was it a rallying cry for issues we were already aware of?  Then make some constructive suggestions.  Use your experience to give us an idea as to HOW we're supposed to form an activist group.  Accounts of you holding down a friend or a stranger while they convulsed are riveting, but lets be honest, its told for your exclusive benefit.  Tell us how people connected to those who would need a hand to hold, and you'll be using your experience to improve the world.  What (and who) did you target for media attention to politicize your plight?  How did you affect change at a local level to make elected officials aware of your plight and your vote?  You talk of the importance of letting people know they should avoid sham science---maybe you should contribute to the research forum every once in a while, where the message might reach those who should hear it.  You've got 25 years of experience in saving yourself, share the knowledge of how you did it, not the self-congratulations of the fact that you did it.  "Knowledge is power"?  Care to offer a jump start, or are you having too much fun driving alone?  

Personally, I think this was just another account of "back in the day we had to walk uphill to school in the snow without clothing" directed at someone walking uphill in the snow wearing rags.  You say you're providing "food for thought"?  To your audience, it just sounds like so much condecension.  

EDIT:  Hilarious that as I was writing this, someone else said the exact same thing in a nicer way.

[Realist]

EDIT:  Hilarious that as I was writing this, someone else said the exact same thing in a nicer way.

Sorry, you're wrong on that one. My sentiment was totally different.

[wtfimpoz]

My bad.  Should've read your post closer first.

[Miss Philicia]

amazing

[wtfimpoz]

amazing

Yes "dear" it is fucking amazing.  A personal narrative done under the auspices of educating others should, at the very least, provide some small amount of education. 

[Rev. Moon]

Oy, WTF! What the fawk, indeed.  Just yesterday I thought you were moving on, but this reply of yours leaves me almost speechless. I am not attacking you (cause you're fragile, new at this HIV shit, young, yada yada blah blah etc), but this is one disappointing entry for you to write. You are steering this thread in a completely wrong direction. Very sad and way too disrespectful (and I am not joking when I say this). Hopefully one day you'll be able to look back on all of this and realise how wrong you are.

Joe, I apologise for invading your thread. Good, thoughtful stuff as always.

[Realist]

cause you're.....new at this HIV shit, young, yada yada blah blah

Hey! Some of us also fit that bracket but can still engage appropriately.

[wtfimpoz]

Oy, WTF! What the fawk, indeed.  Just yesterday I thought you were moving on, but this reply of yours leaves me almost speechless. I am not attacking you (cause you're fragile, new at this HIV shit, young, yada yada blah blah etc), but this is one disappointing entry for you to write. You are steering this thread in a completely wrong direction. Very sad and way too disrespectful (and I am not joking when I say this). Hopefully one day you'll be able to look back on all of this and realise how wrong you are.

Joe, I apologise for invading your thread. Good, thoughtful stuff as always.

Oh whatever, this is a dude who was personally insulted when I asked if HIV could be transmitted from spitting.  And I'll be damned, the whole fucking thread got moved to placate him.  Someone who has repeatedly sought to segregate me into a forum that he doesn't read so that he doesn't even have to see what I write.  The very least he can endure is a little harshly woded but altogether sincere, accurate and necessary criticism as to his motivation in writing what he thinks to be a socially meaningful post.  As many issues as I have, I don't think *I* am the one whose fragility is being stepped around here.  There are a handful of members who've been nothing but vile to me since my first post.  Regardless of what direction I take in dealing with this, I'm certain that when the chips fall, their self-glorifying "contributions" will seem as absurd as they do today.  People on this forum love to believe that they don't "tolerate bullshit".  Maybe its time we spread that lack of tolerance around?    

[Matty the Damned]

Oh whatever, this is a dude who was personally insulted when I asked if HIV could be transmitted from spitting.  And I'll be damned, the whole fucking thread got moved to placate him.  Someone who has repeatedly sought to segregate me into a forum that he doesn't read so that he doesn't even have to see what I write.  The very least he can endure is a little harshly woded but altogether sincere, accurate and necessary criticism as to his motivation in writing what he thinks to be a socially meaningful post.  As many issues as I have, I don't think *I* am the one whose fragility is being stepped around here.  There are a handful of members who've been nothing but vile to me since my first post.  Regardless of what direction I take in dealing with this, I'm certain that when the chips fall, their self-glorifying "contributions" will seem as absurd as they do today.  People on this forum love to believe that they don't "tolerate bullshit".  Maybe its time we spread that lack of tolerance around?     

Well you're verballing Brother Joe here.

Joe didn't request your post/thread moved to IJTP because he didn't want to read it, he argued that particular missive was not indicative of a person "living with HIV" and not suited to a board with that focus.

And he was right. You're still coming to terms with being a Fiver and your posts reflect that.

MtD

[BT65]

Joe, yours is a great post.  I sure thought about lots of people, who aren't in my life anymore.  And about how all we had was each other, and Louise Hay books, colon cleanses etc.  Thanks for posting this.

WTF, you just love to come in and make posts all about you.  Please stop.

[Rev. Moon]

Hey! Some of us also fit that bracket but can still engage appropriately.

I don't think that my comment would apply to you, boo. You seem to be adjusting quite well, regardless of age or newness to the popper flu. Your response to Joe's post goes to show this. So stay on track

[wtfimpoz]

WTF, you just love to come in and make posts all about you.  Please stop.

I really don't see the need for a double standard.  Joe has made several of my posts about him. The spitting thread is probably he most crystal-clear example of this, but he has a history of finding insult in things that weren't about, or directed at him.  And no, its really NOT a great post either.  its artfully written and moving, but its completely masturbatory.  It benefits no one but Joe.  I wouldn't take offense to that, except he couldn't even admit that it was all about him...he had to try to make it into some attempt to "educate others" so that "history doesn't repeat itself".  How condescending!

[Miss Philicia]

So then you're openly stating that from the beginning you were purposely trolling the OP.  Got it.  wtf is right.

[HippieLady]

I didn't find it condescending at all.  

I thought it was a great post, Joe.  Without this story and others like it, I would have no idea of all that had to be endured by those before me.  


Katie

[wtfimpoz]

So then you're openly stating that from the beginning you were purposely trolling the OP.  Got it.  wtf is right.

No "Sweetey", I'm openly stating that a thread done in the name of education should fucking teach us something.  This teaches us nothing.  I did not see a single suggestion as to how we should organize to deal with the issues he was so fond of reminding us of.  In fact, I didn't even see the vague suggestion that we should organize.  The post distracts us from the severity of our own situation by contrasting it with the only thing in recent times that could be worse.  In doing so makes us all worse off.  Its like watching "the towering inferno" while your own apartment burns and justifying the act by calling it an instructional video.  Calling someone out when you perceive bullshit isn't "trolling", and if it is I want every stupid fucking waterlogged condom and accusation of "claiming immaculate infection" meticulously stricken from what I've posted over the last few months.

[Matty the Damned]

And no, its really NOT a great post either.  its artfully written and moving, but its completely masturbatory.  It benefits no one but Joe.

You got a lot to learn, tiny man.

MtD

[wellington]

... its completely masturbatory.  It benefits no one but Joe.

I beg to differ. If anything was masturbatory, it was your stream of interjections. If Joe's posting didn't have benefit/relevance for you, it would have been easy enough to move along, I would have thought.

Joe's post moved me and gave pause to reflect upon my own journey/situation/experience. Thanks for writing.

w

[Joe K]

I wrote this post for those people who could relate to the times and to those who want to share the history of the HIV community. This post was written as a testament to the thousands we have lost and is presented as a history/commentary, because they deserve to be remembered. What I did not set out to do, was write "Advocating for Dummies" and I am floored over WTFs reaction. Apparently you see no benefit in what I write, so I ask that you no longer read my posts.

That being said, would you kindly get the fuck out of this post. Don't test me on this, I am tired of your martyr complex and just because I said some things, you did not like... well I will not allow you to spoil the purpose of this post for others.  But the primary reason your words will fall on deaf ears, is that I only take criticism from either people I respect, or those who know me well. Since you fit neither of those categories, just move on.

[phildinftlaudy]

WTF -
With all due respect, I would suggest you re-read Realist's response to Joe's post.  There was education occurring there.  Many younger people don't know the history of HIV/AIDS.  They don't know it was called GRID (Gay Related Immune Deficiency) syndrome.  They never experienced a time when people wasted away to bones (not skin and bones, but bones).  They never experienced the extreme stigma and fear of society towards those infected.  People's homes burned.  People fired from jobs.  Hospitals unwilling to treat or coming in the room in full protective gear.  My experience was remembering the first story I read about AIDS in an US magazine article.  Then, I watched Longtime Companion, then I watched RENT, before that I watched Philadelphia.  I got the media experience but not the "real" life, watching friends pass away experience during the early days that many LTS' have experienced.

Joe's post was meant to bring to life that experience and make one think (even critically) about what that experience must have been like.  The lesson that was indifference can bring back those horrific days of the past.

Realist was able to see that.  To identify that he never experienced what went on then.  He was able to identify the need to get involved.  It isn't up to Joe to tell you or anyone else what to do to make a difference - that is for you or me or others to determine.  But, lest we do something, history may very well repeat itself.

[wtfimpoz]

I wrote this post for those people who could relate to the times and to those who want to share the history of the HIV community. This post was written as a testament to the thousands we have lost and is presented as a history/commentary, because they deserve to be remembered. What I did not set out to do, was write "Advocating for Dummies" and I am floored over WTFs reaction. Apparently you see no benefit in what I write, so I ask that you no longer read my posts.

That being said, would you kindly get the fuck out of this post. Don't test me on this, I am tired of your martyr complex and just because I said some things, you did not like... well I will not allow you to spoil the purpose of this post for others.  But the primary reason your words will fall on deaf ears, is that I only take criticism from either people I respect, or those who know me well. Since you fit neither of those categories, just move on.

Oh yeah sister, you're one to accuse others of having a "martyr complex".  Does the phrase "pot calling the kettle black" get any usage up there?  Trust me, you're not the first person to wonder why someone who sees no benefit in another's post continues reading...and responding...to that person's post.  At least my responses had some actual meaning...not just "i find this insulting, you have no idea how insulting you are and i'm not going to tell you, this shouldn't be posted here because I can see it".  Take your own advice while you're giving it and stay the fuck out of my threads, or at least stop making them ALL about you and how upsetting you find them.  At least I haven't done a multi-thread job like you have.  And don't order me "not to test you".  That vaguely threatening bullshit only works in real life.  

[David Evans]

WTF,

There's a line between offering a dissenting opinion and being disrespectful. You crossed the line in your first post and now you're way over it. Stay out of this thread or you will be given a time out.

-David

[wtfimpoz]

WTF -
With all due respect, I would suggest you re-read Realist's response to Joe's post.  There was education occurring there.  Many younger people don't know the history of HIV/AIDS.  They don't know it was called GRID (Gay Related Immune Deficiency) syndrome.  They never experienced a time when people wasted away to bones (not skin and bones, but bones).  They never experienced the extreme stigma and fear of society towards those infected.  People's homes burned.  People fired from jobs.  Hospitals unwilling to treat or coming in the room in full protective gear.  My experience was remembering the first story I read about AIDS in an US magazine article.  Then, I watched Longtime Companion, then I watched RENT, before that I watched Philadelphia.  I got the media experience but not the "real" life, watching friends pass away experience during the early days that many LTS' have experienced.

Joe's post was meant to bring to life that experience and make one think (even critically) about what that experience must have been like.  The lesson that was indifference can bring back those horrific days of the past.

Realist was able to see that.  To identify that he never experienced what went on then.  He was able to identify the need to get involved.  It isn't up to Joe to tell you or anyone else what to do to make a difference - that is for you or me or others to determine.  But, lest we do something, history may very well repeat itself.

Realist was placating Joe, something which I think he gets too much of.  People still lose their jobs to HIV, thats why the first thing you're told is to up abotu your status.  Are you open open about it at work?  The stigma is still immense, especially in certain populations.  In fact, its been shown that young gay men (younger than me, the under 25 set) are actually more likely than any demographic to completely hide their status exactly because its so stigmatized in some quarters of the gay community.  And the stigma is metasticizing within our own community. Its not just the christian right saying that AIDS is god's plague, its gay talk show hosts saying we shouldn't care about the infected because "everyone knows how to avoid it".  I just mentioned that a friend of a friend killed himself upon learning his status.  Telling me that this post is important because "people nowadays don't know what it was like" implies a galling ignorance of what other demographics experience when they're newly diagnosed.  Not everyone with this virus is a 52 year old white male living with socialised medicine...a middle aged middle class woman with fabulous health insurance or even a neurotic 28 year old "immaculate infection" whose only real concern with the disease is that at some point it in the next couple of decades he may experience dementia.  The effects of this virus for certain people are very real and very horrifying, and the notion that we need to continuously hear about its past when its presence is still terrible does an injustice to those who are still dying from it, either from a lack of care or from the stigma which is very real, realer for some than others.  Joe's fear that "indifference can bring the horros of the past" turns a blind eye to the present.

He wants to talk about the shame he felt, and hwo everyone needs to hear about it.  Meanwhile, I'm looking at a a facebook posting about how some 23 year old blew is head off becuase he was too ashamed to talk to anyone.  Instead of offering up suggestions on how to actually make the next 23 year old feel better, I"m  

[Tim Horn]

And down comes the gauntlet -- a seven-day time out to rethink the war path you're on in the Forums. Your indignation is neither charming nor welcome.

[ElZorro]

Thanks for the post. As someone infected for just over one year, I personally tend to gain a lot of hope when I meet someone who has been dealing with this virus for 25+ years. It gives me hope as I continue to try to understand the virus and what it means. I just turned 45 and would love to believe that I can hope to live to be 70 or older. Your having survived gives me hope.

However, something that I think is lacking from these amazing forums is more involvement and commentary on current events and research from the LTS, and I think this what part of what one responder said (although not very nicely). I have been "chastized" (very nicely) for accidentally posting a question on a thread that was in the LTS forum (it was deleted so "no harm; no foul"). The post wasn't meant to be disrespectful; it was an accident and it certainly won't happen again (so long as I pay attention).

I do wonder, though, where in this forum newbies can go to get some insight as to what they have to look forward to in the progression of this disease. As was said in the original post:

How different might many of our lives have been, if we had some LTS of our own back in the 80s?  If we had someone who could have warned so many of us about the dangerous drugs or false treatment hopes, however those people do exist today.

I would love to see more proactive dialogue from LTS about what is transpiring in the world of research and the like. There are several who respond to questions that are posted, but what about the questions that are not being asked? What other information can you share that we need to know? What can we be doing today to ensure that at some point we will be old enough to participate in the LTS forums?

Certainly not meant to be disrespectful

[Realist]

Realist was placating Joe, something which I think he gets too much of.   

No I wasn't. I can send you a dictionary if it helps? This is the second time in this thread you have jumped on my initial post without a) taking the time to read it properly or b) understand it.

[phildinftlaudy]

Joe - I appreciated the post and caught its meaning throughout - Thank you for taking the time to put it together.  I hope that you are also getting some rest.

I remember doing my internship back in 1990 in Erie, PA (a small town in NW PA) at the local and only ASO.  It was a time when treatment options were limited.  We didn't have many clients because people didn't seek services for fear of disclosure (particularly in a small town).  I remember having lunch with a client named "Robert" who shared that if anyone at the restaurant knew he was positive and had AIDS they would probably kick him out.  Scary thing is, I knew he was right.

While we still have stigma.  We still have those who don't have access to care or those who do but who choose not to receive it, we have made some gains.  I am one of those people who has disclosed my status at work - supervisor knows, colleagues know.  I don't wear a banner around (although, I am still planning on getting that t-shirt that says "does this t-shirt make me look HIV+), but I refuse to be ashamed of me status or to reinforce stigma that still exists.  

There is still much more I can do and will do to make sure that history doesn't repeat itself, but I also feel that --- for me -- a giant thing I'm doing is not contributing to the stigma of HIV/AIDS and not tolerating those actions that may take us back into that history you so accurately described.  

Thank you again for being you, for sharing and for being more then tolerant.

[Joe K]

Thanks for the post. As someone infected for just over one year, I personally tend to gain a lot of hope when I meet someone who has been dealing with this virus for 25+ years. It gives me hope as I continue to try to understand the virus and what it means. I just turned 45 and would love to believe that I can hope to live to be 70 or older. Your having survived gives me hope.

However, something that I think is lacking from these amazing forums is more involvement and commentary on current events and research from the LTS, and I think this what part of what one responder said (although not very nicely). I have been "chastized" (very nicely) for accidentally posting a question on a thread that was in the LTS forum (it was deleted so "no harm; no foul"). The post wasn't meant to be disrespectful; it was an accident and it certainly won't happen again (so long as I pay attention).

I do wonder, though, where in this forum newbies can go to get some insight as to what they have to look forward to in the progression of this disease. As was said in the original post:

I would love to see more proactive dialogue from LTS about what is transpiring in the world of research and the like. There are several who respond to questions that are posted, but what about the questions that are not being asked? What other information can you share that we need to know? What can we be doing today to ensure that at some point we will be old enough to participate in the LTS forums?

Certainly not meant to be disrespectful

Nothing about your post is disrespectful, but I am unsure of what you are asking. Nobody has the perfect formula for thriving with HIV and with each person being unique, there will never be simple answers to the questions you ask. I survived by doing what I felt was right, for me and I was one of the lucky ones. Others did much more than I did and they are gone. Others did almost nothing and are still here. As I said, there are no easy answers.

What there is, however, are the experiences of the thousands who frequent these forums. I learned how to survive, by watching the actions of others. I learned the concepts and tools, that allowed me to live, but I realize that in the end, I am one of the lucky ones. I cannot tell you, why I live while others died. I can tell you what killed them, but I cannot tell you why they died, because the variables are infinite.

What I would suggest is you use the forums to ask your questions and to invite responses from all forum members, including LTS. Just because you cannot post in that forum, does not stop you from posting the same question in the Living With HIV forum and whenever a question is respectfully presented, members will respond. I'll be honest, I am not the nuts and bolts kind of guy, I tend to think and write about the "big picture" or concepts, as that is where I find my efforts to be most successful.

I understand what you are asking, but I do not believe that any one of us, can provide the guidance you seek. Most of us survive by incorporating thoughts and actions that support our goals of living with HIV. I would hope that everyone would use these forums, to gain the information that you seek. I have been with these forums for many years and I have never seen a respectful query go unanswered.

[ElZorro]

I know that you can't have all of the answers, but I would really love to hear from you and other LTS about the progress that has been made in the past few years and the research that is in the pipeline.

How do you personally feel about this research? Is the current attitude and "op tempo" the same as it has been throughout your 26 years or do you feel as if the research community is more (or less) energized than they were in the past? How does the progress that is being made compare to whatever research or progress that you "counted on" when you were first diagnosed. Is it all just smoke and mirrors?

Also, knowing what you know now, what would you do differently (if anything)? Personally, I've been making small changes in my life that I needed to make anyway. I've basically cut out alchohol use, stopped using smokeless tobacco (which I loved!), and am working on a more nutritional diet (where Doritoes are not a food group and veggies are).

[Joe K]

I know that you can't have all of the answers, but I would really love to hear from you and other LTS about the progress that has been made in the past few years and the research that is in the pipeline.

How do you personally feel about this research? Is the current attitude and "op tempo" the same as it has been throughout your 26 years or do you feel as if the research community is more (or less) energized than they were in the past? How does the progress that is being made compare to whatever research or progress that you "counted on" when you were first diagnosed. Is it all just smoke and mirrors?

Also, knowing what you know now, what would you do differently (if anything)? Personally, I've been making small changes in my life that I needed to make anyway. I've basically cut out alchohol use, stopped using smokeless tobacco (which I loved!), and am working on a more nutritional diet (where Doritoes are not a food group and veggies are).

There is no question that remarkable progress has been made in regards to HIV, with the pinnacle of that progress, being a once a day, pill to treat HIV. None of these advances would occur, without the selfless dedication of thousands of researchers and the volunteers who test and determine dosages of each new drug. As a comparison, in 1996, I took a 4 drug cocktail, that required 48 pills per day. The initial HIV drugs, involved large dosages and numerous pills. An effective HIV cocktail today, can consist of only a few pills, with few food restrictions, that makes compliance so much easier.

I don't think I would use the term "smoke and mirrors" with regards to HIV research, because the research has progressed, only as fast as the technology would allow. If we had the tests available today, in the 80s, the lives of us LTS would most probably, be vastly different. We did what we could, with what we had, but that has never prevented the HIV community from advancing. We survive, because we made changes in both thought and actions, to better fit our design for thriving with HIV.

There are no guarantees in life and living with HIV can be challenging, but often, only as challenging as you allow it to be. It all comes down to striking a balance, in finding a pace that suits you and serves your needs. To be honest, what I or any other LTS believe is of little importance, what is in important, is what YOU believe. I encourage you to address your infection, in whatever fashion you believe is the best for you. For me, I am still learning about living with HIV, and I firmly believe in myself and my ability to decide on what is right for me.

If I can suggest anything, it would be for you to read the forums, ask your questions and work at formulating how you will manage your infection. What matters here, is what you think and believe, because you are the one who controls your destiny.

[ElZorro]

Thanks, for the insight, Joe. All I knew before becoming infected is that HIV/AIDS existed. I also know that other diseases exist, but as they have not impacted me or my family, I'm not really cognizant of the details of those diseases. I'm not sorry or ashamed about that because I don't think that I am probably much different from the rest of the mainstream population. We all know more about what directly impacts us than of things that do not. Just last week, I learned a great deal about cystic fibrosis because a client has a child who suffers from that horrible disease. I would keep my HIV if it meant curing that child...

I continue to learn so much from these forums. I had no idea about the initial treatments. I've been told, of course, that the meds were much more toxic, but I had no idea that anyone would take 48 pills a day...I can't imagine. I also didn't realize how expensive the meds are or (sadly) that there are people in the U.S. who are on waiting lists to get assistance to get the meds that they need.  

I'm one of the fortunate who can take a single pill a day and have been told that I have little to worry about with respect to some of the tough side effects that you and other LTS had to deal with as a result of the earlier meds. I can only hope that is the case. It deeply saddens me to read about what some people in these forums are going through as a result of this virus. Despite those challenges, they seem to be some of the nicest, kindest, most caring, and compassionate people I've ever come across.

But, as a "newbie", I want to know when this will be "cured"!   (my mother, a nurse, has assured me that my inability to control this aspect of my life will be my biggest challenge) So, I've been trying to gauge the progression of research and treatment in order to get a feel for just how "quickly" progress is being made, but it's tough to do because I don't have a baseline against which I can compare.

From what I read, aside from perhaps milder HAART options, the next major hurdle is to kill the latent virus that lies dormant in hidden reservoirs. Okay, I get that. So, assumably, much of the next leg of research will focus on exterminating these reservoirs. Well, at some point, the researchers must have had a similar epiphany that resulted in current HAART (e.g. needing to combat the virus from three different angles), right?

Once they had that realization, they were able to develop the drugs that we have today. I can't help but wonder how long it took from having the realization of what was needed until the actual implementation occurred: 5 years? 10 years? 15 years?  

You were in the middle of the fight against this virus when they determined what HAART needed to be, right? How long did it take from the researchers saying "this is what we need" to them being able to say "here it is"?  I'm willing to remain hopeful that they will be able to deal with the reservoirs in the same amount of time or less....

[dvinemstre]

Thank you for recounting the history of HIV/AIDS. It does astound me that the ignorance still exists, the stigma is still huge and people, even those of us who are poz, don't know how it can be transmitted and also stopped. I just know that dying from AIDS is real, it's sad, it's absurd, and all in this day and age when we have so much research and need. I am thankful for your wisdom and openness. Zan

[PeteNYNJ]

Joe,  thank you for sharing.  Please know that not all of us "newbies" have the same opinions as WTF.  Some of us have accepted our diagnosis and are greatful to the LTS for still being here. 

Pete

[Joe K]

Joe,

You have the wonderful habit of opening posts on here that are understated but insightful, that are compassionate but very realistic and that make many of us stop and think.

At 28 years old I simply wasn't around in the early days and in truth I am likely to never experience anything like those days. I wondered in the earliest days after diagnosis when I read and read and read, what would I have done? Would I have had the strength to support those who had none? Would I have stood up or sat back? What should I be doing now? What does the community need from me? What do I need from the community?

I haven't found these answers, and in part I never will, but this post has reminded me of why I joined the forums - to learn, to support and be supported but in the most part, to take my place in the community and contribute in some minor way if I could (still working on that!).

I'm sorry I didn't reply to your post before now, I seemed to have missed it with all the excitement.

Joe,  thank you for sharing.  Please know that not all of us "newbies" have the same opinions as WTF.  Some of us have accepted our diagnosis and are greatful to the LTS for still being here. 

Pete

Personally, I find posts, from newbies like you and Pete to be reaffirming, because it shows me that you are adjusting to your status, yet remain aware of the suffering that still exists. That even with the challenges of just testing poz, you are sensitive to the needs of others and that, my friends, is a true testament to your characters. My primary goal in posting, is to make people think and feel and sometimes I make posts that cut almost all of us, to the core. So when I see posts, from the newly infected, that reflect a maturity and degree of acceptance of being poz, it lifts my heart, to know that newly infected members are adjusting and forming a life long commitment to the HIV community. But most of all, that you realize that we are all in this together, as equal partners and we never stop learning from each other.

To my fellow LTS who posted... thank you for recognizing a labor of love, written as a testament to our friends, family and lovers.

And Betty, you got me laughing with the colon cleanse comment, as it reminded me of one of our support group leaders. He believed that bleach baths were a form of treatment and would take them daily for months. We didn't notice anything, until the third month, when his skin started turning somewhat translucent, his hair bleached totally white and he began to look like Tom Petty.

[David_CA]

Personally, I found the original post to be useful.  Somebody said that it doesn't teach us anything.  I'll argue that it does.  It pretty much sums up living with HIV / AIDS in the early days to where we are now.  It also serves as a hint of what's to come for those who chose not to take meds, don't have access to them, or lose the ability to get them. 

Hearing of the struggles, the deaths, and the survival from those dark days gives me a perspective of this disease that I'd never get from newly infected folks.  A large part of the compassion that I feel now (since diagnosis) is due to such posts.  They give a 'face' to AIDS that I'd not seen before, and hopefully one that I will never experience.  Until I tested positive, I'd never had a person-to-person talk about all the suffering due to HIV, and I doubt I'm unique in this respect.  As for stigma... I'm not proud of the fact that I have HIV, but I'm certainly not ashamed of it.  It's part of who I am.  If somebody thinks less of me because of it, that's their problem; there's nothing I can do about it, except perhaps try to explain HIV. 

I'll go out on a limb here and say that some of those with the biggest problems accepting their status have issues dealing with other aspects of their lives.  They need to start realizing that they probably will not die soon like those did early on.  They'll likely live for many years with HIV.  I'd hate to think of living so many years without coming to grips with my HIV status.  It would surely make for a miserable existence.  Thanks for the post, Joe.

[Billy B]

Joe- Thanks for the post. The statement about an entire generation being wiped out hit me hard. Except for one friend and me, my entire "circle" is dead. Some have died from regular things, but most passed from AIDS before meds came along. I feel very lucky to have survived without meds until now when such great treatments exist.
Peace,
Billy

[bryan21]

wow!
i must say i think god everyday i wake up that it is 2010 and i am 21 years old and have only now got HIV!

i must say i dont think i could do it! i would have destroyed  myself ie drugs what not. suicide

like i really dont know what to say that is just horrible and some crazy shit right there!! 

[metekrop]

Killfoe, I really apreciated your post.  Please come most often and tell us about your wisdom.  The Hiv community, science and everybody has al lot to learn from your experience and a person like you.

[aztecan]

Hey Joe,

I had forgotten about the T cell naming parties. A good friend of mine named his remaining seven T cells after the seven dwarfs.

He died a decade ago. As you said, people still die, regardless of how far we have come.

Your memories of the Red Cross nurse who "counseled" you after chiding you for donating tainted blood reminded me of my own diagnosis.

A doctor I had never met walked in to the clinic exam room in which I was seated. He stared at his clipboard and said, "You have tested HIV positive. You have about two years left, you had better get your affairs in order." He then left the room. He never once looked me in the eye, nor introduced himself.

That was 1985.

HUGS,

Mark

[jkinatl2]

Joe, I could, and probably will someday share my own memories and experiences of being infected in 1993. But your words brought those times so close that I could almost see them, smell the antiseptic, taste the fear and the regret. Feel the sunburn of shame visited upon me by doctors, social workers, and the negative gay community.

Heady times, those. How anyone survived is a mystery. I did not have an AIDSMEDS.COM for my first year, no mentors, no promises. It was horrifying. And lonely. But I am a better person for it, certainly better equipped to handle the labyrinth of social services and drug rituals.

I want to say thank you and damn you for the same thing; for bringing to light those memories, those dreams and ghosts that I had though cast to twilight. I hope they help someone else, someone recently infected maybe, see our perspective. Maybe even respect it. Perhaps.... emulate it.

Because the Old Guard is, for all intents and purposes, gone. And the next gen needs to assert itself while it can. While it matters.

[Lou-ah-vull]

Very thoughtful and thought provoking... and for me, another trip down memory lane in the mid and late 80s and early 90s.   I was "widowed" at the end of 1993 and it still seems like just yesterday to me.  And yet...so much has changed!  As I shared at our Memorial service in Las Vegas, those that have gone before us are giving those of us "still here" to have a reason to hope for a better future.  This hope will come as a product of our continuing to work for it by our witness and by our care and concern for others.  As prophetically proclaimed at the end of "Angels in America:"  The Great Work Begins!

Gary

[bryan21]

Joe,  thank you for sharing.  Please know that not all of us "newbies" have the same opinions as WTF.  Some of us have accepted our diagnosis and are greatful to the LTS for still being here. 

Pete

yes i feel the same way!
if it wasnt for u i wouldnt know what to think about somethings!
and i think WTF is just mad at the world and dont like the fact that he is poz
so he lashes out at the poz community (even though there are some silly/rude ppl on here)
and i know i can be one of them "rude" ppl