POZ Community Forums
Main Forums => Living With HIV => Topic started by: Joe K on January 03, 2011, 07:55:31 pm
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As I read the forums, I realize that many of the newly infected 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. I apologize to older members, as you will have read part of this post before; however, I believe it needs to be repeated, as many members have no concept of the history of HIV. 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 part of my story, on why I share my life with HIV. The history presented within will always be relevant to the HIV Community.
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 little 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 being treated 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 pain and misery.
The fear is evident by the food trays, linens and sometimes even a cup or two of medications, left in front of the doors. 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 them, 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 humours 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 AIDS Service Organizations (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 poz people or allow closed casket memorials.
It was a time that birthed the AIDS Vigil, as a way for us to honour multiple deaths when we found any place that would permit our services. We held these services, because all that really mattered was that we honoured 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. 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 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 honour 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 why 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 valour 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 hospital 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 love, 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 in the early days of HIV 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 counselling 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. That remains a very dangerous assumption. 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 President 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 those seven years of true research, which were lost by an uncaring president and a disinterested public.
It is short-sighted to assume anything regarding HIV and like it or not, we pozzies are a different breed. 30 years have 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.
The funding of U.S. HIV services remains as volatile as ever, as witnessed by the perpetual ADAP crisis. The future for pozzies continues to be consolidating within the very industries, which profit the most from our disease. The lack of health care continues to kill us in droves, while our politicians and leaders work feverously to formulate “sound bites” that will massage the evening news. In a country that has a trillion dollar-plus budget, our “leaders” were unable to find a couple hundred million dollars to solve the ADAP crisis. The result of that lack of funding has been made abundantly clear, with the deaths of many people, because of a lack of access to antiviral drugs. I remain dumbfounded by the lack of empathy and compassion, within our Congress, whose members actually voted, to sentence certain Americans to death, by denying them life-saving medications. In other words, our “leaders” have decided that some lives, are indeed worth less than others.
America still lacks “universal health care” and the insurance and drug industries are firmly entrenched in the halls of Congress. They spend millions upon millions, every year, to influence legislation and to insure they retain their almost unbridled power over the health care of all Americans. Poz folk however, are not like most Americans; they may have needs, which if left unmet, are nothing more than a prolonged death sentence.
We have expanded HIV testing, because science tells us that the sooner we identify the infected, the sooner we can start minimizing any damage that HIV may cause. Yet where is the compassion, in providing HIV testing, without the resources to provide whatever treatment may be indicated? The “powers that be” are satisfied with identifying the newly infected, but not about providing treatment after diagnosis. And then they sit back and wonder why so many people, simply refuse to get tested. If you do not have adequate health care coverage, or assistance programs to help you, would you really want to know your HIV status, knowing there was no hope for treatment, if you tested poz? How can anyone, expect a person to face such a situation, but more importantly, how can Americans allow this to continue?
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, false treatment hopes and other important issues, however those people do exist today and they populate every part of the HIV community.
I share my history because some of it does repeat concerning HIV; we still have the same arguments even though our understanding and treatment options have exploded. There will always remain the trauma of becoming HIV positive and the difficult journey of coming to peace with our infection. Fear of the unknown still haunts us all; regardless of our years with HIV, because we are different, we have HIV, which if left untreated, will certainly kill you. Fortunately treatment options continue to improve and hopefully the new drugs will be kind, but only time will tell. We have come so far in our understanding of HIV, yet challenges will always remain.
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 remain in awe of the newly infected, who are able to face their infection, take control and live a good life. I know that HIV treatment today, is vastly different that it was, even 15 years ago. I understand how their experience with HIV, will be vastly different than mine and for that, I am eternally grateful. I also know that hope and optimism can be effective ways to address our infection; however, I realize the importance of tempering those emotions with reality. You are not the first, nor the last, to become HIV positive, try a new drug, experience an HIV caused illness, have no side effects, excessive side effects or have your meds fail, as it has been happening for decades. As much as we move forward in areas, there will always be the “human” side of HIV, which we each experience differently. There will always remain the journey with HIV, that we all share and it is that shared journey that powers these forums.
I use the word “shared” because that is what matters here, that we feel safe and secure in “sharing our lives” through these forums. I will be honest; I do not like this constant distinction being made between the newly infected and LTS, as if they are somehow mutually exclusive. It frustrates me, because I understand the newly infected will have a vastly different experience with HIV, however, far too many want to ignore the fact that HIV still kills. The only message I ever hope to convey is that living with HIV is not a spectator sport, nor for the faint of heart. Even with all the advancements, the fact remains that this is a damn difficult disease to live with and my only hope is to help you, to avoid making the mistakes that I made.
I will never try to tell you how to live, I simply wish to share my history and views. I believe that the key to living with HIV comes from you “owning your infection” and all that entails. I want you to see your infection realistically and to do that, the history of HIV matters, because knowledge is power.
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Thank you Joe.
After 8.5 years you are one of the main reasons I'm still here on the forums, you gave me the strength to keep going.
Aroha always
Jan :-*
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Thanks Joe,
I never tire of hearing this recount.
My hat is off to all the LTS'ers and everyone who paved the way to allow me and others like me to live.
When I think about my current circle of friends and the thought of losing most of them to a horrible death, it is a thought that is unbearable to me. I could hardly handle losing just one. My heart goes out to those that had to live that horror and do so knowing that they could be the next to fall.
-Will
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Thanks Jan and Will for the kind words and I thank you. I also wish to remind readers that my story is the same one that each of our LTS members has lived, I simply choose to share mine because we must never forget. I want members to know that there are heroes here, by the dozens, including some moderators and dozens of members. We did what we did, because it is what we needed to do, for so many reasons. We did it out of love, for people whom we cared very deeply about, who were dying, with no friends or family. We became a community, a family and for the lucky few, we endure to this day and we have much to be proud of and even more to be grateful for.
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All of the sudden, the relevence of this thread is even more apparent.
You know, Joe...I wasn't quite old enough to have the personal experience of people dying all around me in my immediate circles, but I was old enough to have a good understanding of what was beginning to happen all around. And while the smell of death may have permeated the hospital hallways, the scent of fear was everywhere. I came into puberty and sexual awakening at the same time that billboards were going up around town telling me that God's wrath was coming for me. People with AIDS were being tossed out on the streets with nothing while comedians even made jokes about the subject.
I am grateful that my fortune placed me behind that initial horrible wave, but I am also grateful that I've never succumbed to the sickness of thinking that your history wasn't my history as well.
I'm in solidarity with you.
Tim
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Hey Joe,
I agree, we did it out of love for those who we were losing by the dozens, and, as Will pointed out, all the time knowing we could be next.
We did indeed become a community, because we didn't have any one else to turn to - most mainstream "leaders" turned away.
We are lucky indeed to have lived through it, albeit with our own set of scars.
As we enter yet another new year, I am glad to count you among my friends.
Give Stephen my love.
HUGS,
Mark
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should be required reading, thank you for the perspective
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Joe, you'd be suprised at what has changed here in Detroit...and what hasn't.
-Henry Ford ID patient since 1991
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Joe - That is very well put and extremely moving.
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Thanks for sharing.
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I was so overwhelmed when I first read your post that I couldn't even respond until now. Somtimes it's easier to forget than to relive those realities. I was just starting my nursing career when the fist main wave of AIDS hit Columbus. It was a difficult but vital job and we didn't know a lot about the disease. It became even more difficult when you started tending to friends who were closer than family were. And in the main midst to receive my own diagnosis was terrifying because of what I witnessed. Making death pacts with those lucky enough to not be too sick and assuring each other we wouldn't let the other linger and suffer.
Thanks for the post, for a brief moment I was reliving the 80's. Lest we forget, we could become the forgotten again.
Greg
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I appreciate you post and respect what you and others have been through.
As someone who is newly diagnosed but old enough to remember the past I find that many other newly diagnosed people have an aurora of sunshine and optimism that I find suspect and dangerous.
I hope myself and others continue to learn from your experiences. I hope you do not get discouraged in sharing your experiences with those who are new to this experience (that goes for other LTS's also)
Peace
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Thank you all for the kind words, but you know I didn't write this for me, but rather for all of you. I believe the newly infected need to understand the history of HIV, to understand the state of HIV care and services in the 21st Century. I also do not consider this my history, but rather "our" history, because HIV is a continuum, passing from one generation to the next and my goal is to remind people of what really happened to hundreds of thousands of gay men, in the first decade of the disease.
Our history can never be forgotten, as it laid the foundation for all that we have today. As frustrated as I may become at some of the newly infected, I am so happy that most of them will never experience what I did and I am honored to have contributed to the HIV community. I find myself torn, with newer members, because while I want them to be encouraged regarding treatment and prognosis, I fear that too many see HIV as some easy disease and that simple mistake can be fatal. I want them to experience the joy and hope that new treatments offer, but I insist that they see HIV realistically and that means you pay attention to your health, even if you only take a couple of pills a day.
My entire goal here is to encourage people to own their infection and sometimes that can be damn hard. We have all experienced trouble with HIV, in one form or another, and I do not want people lulled into a false sense of security, regarding HIV. It still kills and like it or not, I do not see that changing anytime soon. Yes, we can keep it at bay, but ultimately at what cost? We just do not know and until we do, I hope people stay on top of their health. HIV is not like any other disease, for many reasons and the sooner we can accept those facts, the easier you will find it to manage your own health.
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Amen Joe!
Gary
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with great humility i ask you, please write a book...
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Thank you, Joe.
Em
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Thanks for sharing Joe --- I know that there may have been times when you wrote what you did that probably brought back many of the emotions that you experienced going through what you did.
It also brought back my first memories of HIV/AIDS - reading an US magazine article back in the early 80s about the disease. I also remember working my first internship at the Erie County AIDS Bureau in Erie, PA back in 1990. The building was non-descript - I remember the agency offering many of the services you described (food boxes, rent assistance, a listening ear, support). At that time there still wasn't much of a focus on living with HIV, but rather trying to ease the pain and provide comfort to those dying from AIDS.
Your story brought back many emotions for me. These are emotions that need to be brought up and kept close to the surface, lest I ever forget those who have gone before and to be aware that history forgotten is history that will be repeated.
Thanks again for sharing.
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thank you for sharing your story....
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I was just about spew some venim on another post thenI was lucky enough to read this post again.
Thanks so much
Greg
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Joe.
Those of us who are newly diagnosed are so lucky that we have the wisdom and experience of the LTS perspective to remind us what things might be like if you all hadn't fought so hard.
Thank you,
Steve
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Joe,
Thanks for sharing this story again. It really bought back some strong memories for me. Our HIV/AIDS experience is similar in length, but we have had totally different stories to tell. I remember being so so fucking made at President Reagan at the time I could scream. He waited until 1987 to mention the word AIDS in public.
My experience in a the hospital was different. I was in the beginning group of people that Hoag Hospital would actually allow to be admitted for tests. I clearly recall going through a difficult spinal tap. I was told to lay down for an hour after. I looked for my DR. and went back to the room where I had the test done, and no one had bothered to pick up the containers of spinal fluid. They entire tray was just pushed in the corner. Flies were all over it looked like trash.
Your story, and all of our stories are so important. Every HIV+ person has a story to tell, and I hope we can keep learning and sharing from each other.
Thanks for keeping it real, once again. Happy New Year to all!
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Thanks so much, Joe.
This is very powerfully articulated and everyone should be encouraged to read this history. And I mean everyone, not just those in high risk groups.
This may be seem like ancient history in the US but this types of situations are faced by those who live in third world countries who still don't have access to the many drugs on the US market.
Thanks again for sharing this.
AD