guypaul

Kicked to the Curb

Posted on 01/30/09, 04:35 pm

I'm coping with a young pup on the HIV board who goes out of his way to criticize and diminish my experiences of living with the HIV virus for 23 years. He says there's nothing different about being a long term survivor or being recently infected and that my survival doesn't make me any more reliable than anyone else. Do y'all cope with that? (And please, I'm only talking to the real LONG TERM SURVIVORS in this group -- people who really DO know what it's like to LIVE with the virus INSIDE them.)

I wonder how it doesn't cross people's minds that we were the guinea pigs? We let doctors use our bodies to test drugs that nobody knew anything about and we knew had a darn good chance of killing us, just to there might be something that would work later on. We didn't know if WE'D get to be part of that "later on." Jeez, sometimes I feel like they're all just a bunch of snot-nosed ungrateful brats.

I wonder why it's so much to ask to just acknowledge the sacrifice - my whole fucking adult life - that I've made to HIV? Any time I deal with that punk, I hear him clearly saying, "You don't have value."

I've put him on ignore, so that individual isn't someone I need to deal with, but that's pretty much how it went anyway .... Reagan killed my friends by not letting anything be done about AIDS, then some drugs killed my friends, then budget cuts, the illness, time .... and now I'm the only one left and - the one place where I think those experiences might have value are spit on. I wonder if this is what it feels like to be 350 years old?

• Reply #1 01/30/09  7:07pm
  
  Taoe
  I go thru the same thing, Paul. It's easy, if out of nothing but their own sense of sheer terror, to want to somehow REDUCE what the elder survivors have been thru. I mean, it's really freekin scarey, when they would LIKE to believe this crap the doctors tell them, that aids is no longer a death sentence. We remind them, that they told us this as early as 1995... and to someone who is 25, 1995 is 'forever ago'... I'm not saying all agist disrespect toward older patients has its roots in the same sense, but, I DO see big reasons why there might be a tendancy/urge on the part of some of the newbie young hiv poz people to 'minimise' the great heroics it took for most of us to emerge thru the other end of what is now nearly three decades of this nightmare.
  
  I can barely speak to the newly diagnosed that i meet, as soon as I find out they wont even do their own homework, wont study their own medical material, and have only to parrot something they 'heard' elsewhere, to deem something an absolute truth.
  
  When these kids are brainwashed with the audacity of hope, that aids is not the killer it used to be, even when the reality on the ground is that people are dying at NO MORE OR LESS A RATE THAN EVER, i can see why engaging with US... the few of us that remain, healthy or not,... i can see why we would represent something very terrifying.
  
  i mean, in OUR DAY, nobody knew for sure. today, they THINK they know, that things will go better for them than the nightmare stories of old... yet deep down inside they are still shitting bricks over wether they will be the survivor, or the one who kicks the bucket.
  
  And of course, there is this aids education program in every city that has these kids thinking theyre the latest hottest best educated among all patients. To say we know more experientially, is to THEM, and that we are among a scant few who 'made it'.... is to them, proof that we must have known less, because afterall, aids doesnt kill like it used to.
  
  DO YOUR HOMEWORK KIDDIES.
  
  i TOTALLY empathise with you paul. it's tough, for any generation of experienced people, to communicate with the younger of their lot.
  
  
• Reply #2 01/31/09  3:04am
  
  guypaul
  Thanks for responding Taoe. I decided to come to this group with my grievances because they really don't care on the main board. Some gal just went off on me for not coo-cooing over someone who may or may not be positive (and quite likely could be just someone trying to get attention -- Lord knows the HIV board sees enough of those dramatics) because I corrected a statement someone made about straight people vs. gay people and transmission that could have been misinterpreted. She preferred keeping her head buried in the sand and was upset by reading anything factual in the thread.
  
  If the next generation can survive by giving each other hugs and saying "oh poor dear" they must be made of stronger stuff than we are.
• Reply #3 01/31/09  10:59am
  
  Taoe
  as long as the almighty 'they'... keep us bickering and being emotionally reactive to split-hair issues, we all lose. this whole freekin thing is based on a foundations of unstable twisted truths to begin with.
  
  the big picture. everything else is the work of wedge-driving artisans, polticos, numb-skulls, skullduggery, and of course, gallo's unsubstantiated, UNREPRODUCABLE, unethical, nefarious bio-trickery.
  
  someone still needs to explain to me why dna chain terminataion isnt covered by 'first do no harm', and what it is they're actually measuring when they say we're antibody positive.
  
  jon scythes has a few things to toss over their heads too.
  
  as for the drama, well, i recognise that these people, just like our generation was, are so used, abused, over-used, traumatised, mis/mal,and underinformed. and this goes for issues across the board in today's 'new age'...
  
  viva christine.
  
  
• Reply #4 02/02/09  12:08am
  
  mark1424
  guypaul, W/out knowing much of this person besides what I've read, it's evident that he is immature & confrontational. The list of meds reveals many issues & shouldn't be taken seriously. I can only imagine that acceptance of how things are for him is highly distracted or even unreachable w/the itinerary of so many medications. Reaction is a temporary fix for anger. Any longterm survivors have come to accept how things are and have some kind of peace w/in, otherwise we wouldn't be sharing our wisdom today. Take care of yourself & just let it go.
• Reply #5 07/03/09  10:43pm
  
  rerolpxedaily
  Your letters have stirred such emotion in me.
  I live in Mexico, the rainy season has started, that means I am having problems breathing.
  When I am struggling for air, I remember the first friend that I had who died of PCP. He was 23yrs. They closed the entire floor of the hospital, we wore "space suits" to visit him.
  I also remember the first time I met survivors of concentration camps. I was young and they made good natured fun of me. One said " I can't hear so well, the war. Have you ever been in a war?" The other two smiled.
  I didn't understand them.
  Sometimes I take pride in having survived so long. The truth is I am a fool, sometimes stubborn, sometimes right and sometimes lucky.
  Without question the hardest part for me is the uncertainty.
  The most rewarding part is living a life that few others will ever know. Being a long term survivor means having feelings and experences on the cutting edge of the human experence.

For those of us who have been LIVING with HIV for 10 or more years and plan to LIVE many, many more.