POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: MarcoPoz on December 31, 2013, 12:33:22 am
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Ok...so I watched it. I'd put it off as long as possible, but since my entire world, it seems is always connected to HIV, ALL my friends were blathering on about it. So...I watched it. fuck. Like I needed someone to remind me of what is most likely PTSD related total suppression of my early years living with and dying from HIV. Yes, like many others here, I too am Lazarus. I saw how young everybody was--I knew where I was and the activism I was involved with during each scene of this movie. I could taste the much waited for miracle of DDI on the back of my throat and yep--still made me gag. fuck.
I re-lived the arc of ARC, the conference in San Francisco, the picc lines, KS, quilts, anger, fear, empowerment, indignation, discrimination, death, hope and love. fuck.
I too wonder: How did I make it? Why did I make it? WHy did almost all of my friends and clients die? fuck.
Then I contemplated the decline in urgency from every corner of our fight. The movie had said that finally the doors were open to us (PWA's. Yeah, I still use that term, eventhough it offends others) but how quickly the doors have closed. We became a system....a process...a bureaucracy...a clique of cliques. Did we have some transfer of power ritual that I'm not aware of, or did we just willingly go into being co-opted happily? Perhaps the lure of our PWA organizations to the big-boy's table has always been too much for us. Then we allowed ourselves to be shut off again from decisions at HRSA and CDC.
But we should be happy about our comprehensive plan for HIV from the Obama administration (vague, opaque, unfocused and unrealistic--oh and UN-FUNDED)
We have meds. Good. Side effects still suck. fuck. Access is still fucked. fuck. Dr.'s still make moral judgments on who is worthy of receiving HAART based on patient behavioral issues. fuck. Our epidemic is larger than it ever was. fuck. Our epidemic now is more disproportunately black. fuck. Oh, and still Gay. fuck. And women still get it. fuck. Oh, and it's younger now too. fuck.
The messages I keep hearing--the 'line' if you will that I am almost being forced to tell newly diagnosed people is that HIV is no problem--couple-a-pills-a-day...or even just one! Stigma no longer exists. Get of the public health system and get right back into the swing of things, little fella. fuck.
Mostly...I'm lost. I'm crying. I miss so many, so desperately. I wonder what all the effort has really gotten us. I still don't know how or why I made it--and my hubris forbids me from facing the fact that it was just dumb luck.
I'll go tomorrow and see newly diagnosed patients. I will work with them. I'll spend more time then I'm supposed to, given my funding and intervention model. I'll mostly just listen and try to offer hope and some direction amid the confusion.
But lately...I'll still either come home and cry--or just bury the past again.
fuck.
Fucking documentary.
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I fucking agree with you, Marco. I lived through this time; I lost friends. I have the side effects from the early drugs that did almost as much harm as they did good. I refused to see the film even though it was shown as a fund-raiser for my ASO.
I hope you got some sleep and are feeling better now. I'm glad you were able to vent and put your grief into words.
Hugs, Deiby
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Thanks for the opportunity to vent.
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Fucking agree with the fucking sense your fucking making off the fucking state off play at the fucking moment , Do know that 19 bed ward was full for 10 days not the fucking 8 days I first thought I was fucking in for.
For some off us its a fucking weird time and shows every indication off being so for some more tears/years yet, the fact that historical documentary's are being made being perhaps the most surprising fucking event.
Well that's more fucks than I have had in past 15 years. and deserves a Fuck off its own
m
ed--tis the price off being ALIFE dear Marco , that's all the fucking sense I can make off it
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MarcoPoz , What else could you possibly say to newly diagnosed patients ? You have to be gentle and caring .
We are no longer in the Death Zone , so to speak .
The film brought out some very awful times , I lived through them . Most of my friends died years ago .
I have new friends now , because of HIV / AIDS .
I have a hope that some narrow minded ass holes will watch that film and possibly walk away with a little compassion .
Having such a stigma attached is truly a burden to live with , but i'm still here
good days bad days , very bad days :(
Your quote : " Mostly...I'm lost. I'm crying. I miss so many, so desperately. I wonder what all the effort has really gotten us. I still don't know how or why I made it--and my hubris forbids me from facing the fact that it was just dumb luck. "
I assume on my part good genes ? No body seems to know .
Weasel , Please don't cry :-*
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Marco how are you?
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I'm MUCH better now, knowing you are out of hospital--AND using the word 'fuck'! ;-)
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I'm MUCH better now, knowing you are out of hospital--AND using the word 'fuck'! ;-)
I blush but for you dear Marco I will go the extra mile . And I had no doubt that you would find a way off proceeding .
It,s all training .
m
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Hey Marco,
I had much the same reaction as you to the film; I have not been able to express my feelings about it nearly as eloquently as you....and excellent use of the F word, by the way, and never, in my opinion, more appropriate. What else can you say? FUCK
During my "sick years", as I refer to most of the 90's, life was so weird. Thinking you might die any week....doctor visits so often, it was not unusual for me to go every day during a 5 day week....transfusions, pentamadine treatments, molluscum removal surgeries one after another, on and on.....and in and out of the hospital so much, it was basically my home. I took that damn AZT every 4 hours, like clockwork, and it just about killed me. I am so damaged (as many of us are) from those early drugs and treatments, that even if I was "cured" of AIDS tomorrow, I would never be really 'well' again. Watching the film brought it all home, made me think of all those ugly things that I have built brick walls around in my mind....a mind that is so wacked from so many years of anti-depressants, it's a wonder I can have a rational thought.
Knowing there are others who share our experiences and feelings helps; Right now I'm trying to get through Dr. Michael Saag's book Positive, and it has stirred up much the same feelings as "How to Survive a Plague". I have just about come to the conclusion that I do better if I don't look back, but just keep on TRYING to move forward. I have ALWAYS been a person to look back and to remember....the past has always been very much with me. But if I could wipe out the 90's from my memory, it really wouldn't be the worst thing that could happen.
Thanks for letting me ramble on. HUGS to all my fellow LTSers,
Alan
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I made the mistake of watching the the dallas distrbuters club I cryed for 2 days... FUCK
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Hey Marco,
I had much the same reaction as you to the film; I have not been able to express my feelings about it nearly as eloquently as you....and excellent use of the F word, by the way, and never, in my opinion, more appropriate. What else can you say? FUCK
During my "sick years", as I refer to most of the 90's, life was so weird. Thinking you might die any week....doctor visits so often, it was not unusual for me to go every day during a 5 day week....transfusions, pentamadine treatments, molluscum removal surgeries one after another, on and on.....and in and out of the hospital so much, it was basically my home. I took that damn AZT every 4 hours, like clockwork, and it just about killed me. I am so damaged (as many of us are) from those early drugs and treatments, that even if I was "cured" of AIDS tomorrow, I would never be really 'well' again. Watching the film brought it all home, made me think of all those ugly things that I have built brick walls around in my mind....a mind that is so wacked from so many years of anti-depressants, it's a wonder I can have a rational thought.
Knowing there are others who share our experiences and feelings helps; Right now I'm trying to get through Dr. Michael Saag's book Positive, and it has stirred up much the same feelings as "How to Survive a Plague". I have just about come to the conclusion that I do better if I don't look back, but just keep on TRYING to move forward. I have ALWAYS been a person to look back and to remember....the past has always been very much with me. But if I could wipe out the 90's from my memory, it really wouldn't be the worst thing that could happen.
Thanks for letting me ramble on. HUGS to all my fellow LTSers,
Alan
This looking back thing is a hard one for me. Certainly when I feel at my best I am living in the here and now however sometimes the hear and now is awful. I have to look back and re visit somethings if only to make sure I don,t repeat them now.
But its a balance one that is hard for me to get right. I have not seen the film yet, I will do probably when I buy the DVD so I can watch it in private.
As for thanking us for going on Alan , tish tosh you go on for all your worth , its good value.
m
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I finally was able to watch the movie all the way through last night. Each time I tried previously, I practically hyperventilated and became overwhelmed.
This time was a little different, I saw past the doom and gloom and saw the deeper messages. We can all go to that dark place of remembering the hurt, pain and loss or we revel in what our greater community did to benefit all of society. I actually smiled a few times, observing the strength and determination of so many.
Even in the face of death, so many continued to fight and demand change. That's the message I will take away from the movie from now on.
I've always had comprehension issues dealing with anything of the mental side of life. I've come to realize that most of us have no choice in that we do suffer PTSD, it's almost a given and discussing it has been a blessing for me.
I can thank Gary and his wonderful AMG memorial talks to help achieve a level of peace and put it into a prospective I can live with.
greg