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Author Topic: A differerent opinion  (Read 4004 times)

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Offline aztecan

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A differerent opinion
« on: February 15, 2011, 12:54:18 AM »
OK, since the other thread on HIV being a blessing turned into a debate on health care reform, I started a new thread.

While I appreciate the attitude the OP in the other thread has regarding being optimistic, I must say that HIV is not now, nor has it ever been, a blessing in disguise.

I also disagree with the statement that "everyone has something," referring to HV being just another disease.

HIV is not just another disease, it is all other diseases. It is all the horrors of all the plagues that have decimated mankind throughout the ages all rolled into one. The only reason it doesn't look like it right now are the meds we have to try to control it.

I was diagnosed in 1985. I was told by a doctor whom I had never met, who walked in, never made eye contact, but stared at his clip board as he said, "You have HIV. You have about two years to live. You should get your affairs in order."

Then he left the room.

He was the last doctor I saw for seven years. I only agreed to see a doc 1992 because a friend convinced me I should.

We had been at one of our local watering holes and were three sheets to the wind when I more or less blurted out I was positive.

Actually, it was a real occasion for me, now that I look back on it. It was the first time I had told anyone of my status. I had kept it to myself for seven years, never telling a soul.

You should remember that when I was told I had the bum flu, there were no treatments. They didn't even know how to treat the OIs, let alone the virus itself.

I remember my friend insisted I stay the night with him after I had told him, because he wanted to talk to me about it in the morning when we were hung over, but reasonably sober.

He also gave me a bottle of medicine he said I should start taking until I could get in with a doctor. They were small white capsules with a little blue band around the middle. It was AZT.

He was a good man and a good friend, may he rest in peace.

In between 85 and 92, I watched hundreds of people die of complications of AIDS. That is something that many of the more recently infected have avoided and, if anything, that is something I would call a blessing they should be thankful for each day.

I also remember during that time, knowing there was nothing that could save me once the end started to draw near, and every cold, sniffle and ache was a cause of concern. It was also during this time I contemplated suicide on several occasions. I never could come up with a plan I liked, though. I did rather favor doing out like Kris Kristopherson in the remake of "A Star is Born." I would drive my car to break neck speeds, then fly off the highway and die in a fiery crash. Then, I thought, what if I lived, I might be a quadriplegic.

During the years, I managed to survive the dreadful era of Reagan and Christian hypocrisy and mitochondrial toxicity from too many years on the early melds, when I took between 18 and 22 pills a day just to fight HIV.

I lived with constant diarrhea, kidney stones, anemia and liver complications. I now have high lipids, a buffalo hump, a neck that looks like a goiter, and the skinny, veiny arms and legs, the latter of which ache constantly because of a combination of peripheral neuropathy and myopathy possibly caused by CPK levels caused, at least in part, by meds to lower my lipids, and possibly the HIV meds I now take.

I can't see where "blessing" comes into play here. I guess it could be a blessing that I am still alive, if for no other reason, than to annoy others. ;D

HUGS,

Mark
« Last Edit: February 15, 2011, 01:03:33 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline wolfter

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Re: A differerent opinion
« Reply #1 on: February 15, 2011, 07:26:50 AM »
Thank you.  I agree with the original OP's optimistic attitude, but I think it was worded incorrectly.  I too watched so many die in agony knowing that I was probably next.  Never dreamt that I'd be around so many decades longer missing those who meant more to me than my own family.  I still get emotional thinking about the "death parties" where my loved ones knew they were soon to pass and wanted to experience the love we all shared.  I certainly don't miss holding loved ones and comforting them and telling them that it was ok to move on. 

I'd like to think that I'd still have the compassion in my heart that this hideous disease forced us to become rigid before our time.  HIV didn't make me a better person, it virtually wiped out my entire support structure. 

Perhaps it has become manageable, but I will never accept that anything positive resulted from it.  That's all I can say for now, because I'm about to get too emotional.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline surf18

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Re: A differerent opinion
« Reply #2 on: February 15, 2011, 11:05:48 AM »
You long term survivors are so courageous. Yes I try to keep a positive attitude as a newbie but in no way is this a blessing. The mental toll is  something often overlooked.
Every day I long for my neg status.

Offline bmancanfly

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Re: A differerent opinion
« Reply #3 on: February 15, 2011, 11:25:05 AM »
Thanks for sharing Mark.  I'm glad you're still around.

"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline AlanBama

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Re: A differerent opinion
« Reply #4 on: February 15, 2011, 11:31:19 AM »
Mark, I am so with you on this issue honey.   We lived through the WORST.    No one can imagine how close I came to dying, and on more than one occasion !  We went to countless funerals and memorial services....when you see everyone you know dying, it changes your perspective on life.   Especially when I was told, as Mark was, to 'get ready', or basically 'your time is coming soon'.  I think the cavalier attitude so many of our young people have today regarding HIV would change, if they saw many people dying of this disease.   I am GLAD there are drugs that keep us alive -- heaven knows, I would not be here without many of them!  Now we don't have to see AIDS wiping out so many of us all at once.

A blessing?  Hardly....    A curse?  Possibly...  A life-changing Virus?  Definitely ! If having HIV has caused you to work on your addictions and/or bad behaviours, and on your relationships with others, that is great; but this is all something that needed to be addressed anyway.  The blessing is that you are doing more of the 'right things', not that you have HIV.   Let's be very clear about that.  Contracting HIV is the worst thing that has ever happened to me, hands down.

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline eric48

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Re: A differerent opinion
« Reply #5 on: February 15, 2011, 11:49:01 AM »
My answer to the 'blessing in disguise' was a NO-NO as far a I am concerned. Thanks for reminding us.

I remember reading a comment by a marketing mamanger of one of our HIV drug companies saying that for the newly infected/diagnosed (with access to his meds, I suppose) being diagnosed was quite similar as being diagnosed for diabetes.

If I had this person in front of me, right now,  wold really give him a hard time for that public comment.

On the other hand, I have people with diabetes around me, and I must admit that, well...

Also, albeit on a very different level, I would like to remind that HIV has ALSO ruined the social/sex lives of the uninfected, at risk people (as I was until last year)

there can be nothing happy for the person over whom some fear always looms

I do not know if there is a scale to rate the shittiest among the shittiest... But, IMHO, HIV ranks high

Thanks again for refocussing the discussion

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline thunter34

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Re: A differerent opinion
« Reply #6 on: February 15, 2011, 12:23:43 PM »
I fully recognize that, as someone who did not weather the earliest part of this epidemic, I have no way of fully appreciating what so many of you endured.  That said, part of me still very much wants to link arms with you folks as a "we" rather than an "us" and "them".

I also recognize that the manageability of this virus is something that hangs by a frayed thread.
AIDS isn't for sissies.

Offline Joe K

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Re: A differerent opinion
« Reply #7 on: February 15, 2011, 12:37:35 PM »
Mark,

I believe the confusion in the blessing in disguise thread, came from the wording of the post, so let me try it this way. Do you believe that you are a better person (however you define that) today, than you were prior to infection? I know I am. HIV, or any major disease, gave me a life-time smack upside the head and to be honest, I truly believe that I am a healthier and happier person, both because of and in spite of HIV.

I fully recognize that, as someone who did not weather the earliest part of this epidemic, I have no way of fully appreciating what so many of you endured.  That said, part of me still very much wants to link arms with you folks as a "we" rather than an "us" and "them".

Tim, funny you should mention this "we" vs "us" as I am preparing a post on that very topic. As always, great minds think alike.  8)

Online GSOgymrat

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Re: A differerent opinion
« Reply #8 on: February 15, 2011, 04:02:03 PM »
Do you believe that you are a better person (however you define that) today, than you were prior to infection?

Have I made personal improvements over the past 18 years? I would like to think so. Honestly, my life was on track before HIV and I didn't need a disease to give me a wake up call...  and there was no wake up call. HIV is a disease and because of that disease I am physically weaker and have less money than I would have without HIV. Otherwise I still work, continue my education, have a good relationships with my partner, family and friends and I am basically doing all the things I did before I was HIV+. The only thing I can think of that has been of benefit from having HIV is a better understanding of people with chronic illness-- what an expensive price to pay for an insight.

I know people try to make sense of HIV by attributing some kind of meaning or purpose to it. For me there is no meaning. It is a virus. I got the virus because I had unprotected sex with someone who had the virus. I take medications to keep the virus suppressed. My life continues.

Offline wolfter

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Re: A differerent opinion
« Reply #9 on: February 15, 2011, 05:10:07 PM »
I guess a lot of it depends on what track our lives were taking before diagnosis.  I was on track for med school and had focused on that goal since I was a child.  That dream was unobtainable in the 80's after diagnosis but today would be a different option.  We all bring every aspect of our lives into this debate and there will always be varying opinions.  I've tried to come up with one positive aspect that was even remotely close to being a benefit.  For me, there are NONE!  I liked the old me so much better. 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline jkinatl2

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Re: A differerent opinion
« Reply #10 on: February 15, 2011, 05:19:30 PM »
I agree with Mark and GSO and others here.

HIV is not an event, like a car crash. Nor is it a membrane from which a person can emerge. It is not an interruption of life that can (at the current state of science) be remedied. Even today, in the world of HIV Lite, it fundamentally shifts a person's paradigm.

Sometimes not instantly, but over time. Like the person who does not believe that healthcare should be a basic right, until they need expensive medical treatments and meds.

Or the person who does not have any empathy for gay folks (despite his detours into the wild world of backdoor sex) and then finds gay men and women to be his best friends during his tenure with HIV.

For me, I was doing OK before HIV. I had good friends, fun jobs, and a real chance at a career doing what I loved the most. The friends moved away, though we are still close. The career ended, as did the jobs when I got too sick to work. I was a decent enough guy before HIV, so I really don't think having the virus made me any better or wny worse a person than I would have been anyway.

What it did make me was far sadder than I ever imagined I would end up. Going to too many funerals. Making too many friends who died. And, thanks to the healthcare and disability procedures and policies, pretty completely outliving my usefulness by the age of 40.

I do not deny a silver lining, all the wonderful people I have had the honor of meeting, here and elsewhere. But when the cloud that hosts the silver lining also hosts a string of EF-5 tornadoes, well...

I dearly love many of you guys, and wish we had encountered one another under different circumstances.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Joe K

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Re: A differerent opinion
« Reply #11 on: February 15, 2011, 05:31:21 PM »
What it did make me was far sadder than I ever imagined I would end up. Going to too many funerals. Making too many friends who died. And, thanks to the healthcare and disability procedures and policies, pretty completely outliving my usefulness by the age of 40.

JK, your words are painful to read, as you describe the ultimate price we pay being poz. Maybe, if more newly infected, truly understood how different our lives have been, that there would be no divide between the young and the old. Our experiences with HIV may differ, but eventually we all pay the same price, one way or another.

Offline WillyWump

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Re: A differerent opinion
« Reply #12 on: February 15, 2011, 07:24:56 PM »
Thanks for sharing Mark (and others). I always enjoy(not in that way) reading about what our LTS'ers went through because it helps me to realize how lucky I am today to have a full arsenal of meds to combat my HIV. An arsenal of meds that was developed on the backs of you LTS'ers.

I see no blessing in having HIV, other than the blessing that I as newly diagnosed have decent meds.

-Will
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Offline surf18

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Re: A differerent opinion
« Reply #13 on: February 15, 2011, 07:57:26 PM »
truly this type of thread should be a psa. this would have more impact than any other crap they put on there. true words by real life true people.


Online Jeff G

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Re: A differerent opinion
« Reply #14 on: February 15, 2011, 08:26:18 PM »
Thanks for posting this Mark .

Threads like this remind me that it doesn't matter how much I think I know , there still is room to learn . Even though I have been poz for 26 years + I get lost in my feelings or even worse doubt that I have a right to feel anything at all after all this time .

What bothers me the most is sometime I feel like a failure . I feel the heaviness of living and seeing the human toll HIV has taken on people I love and the world in general and I internalize it and wonder why I cant do or be a better guy , I feel like I haven't the right to be anything other than in perfect health because I'm still alive . These are the things I don't want to admit after all this time .   

Then I hear what you guys are thinking and I know I'm not the only one carring the load . It helps .         

Offline drewm

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Re: A differerent opinion
« Reply #15 on: February 15, 2011, 11:11:56 PM »
Thank you Mark for posting this. Being in relatively good health with good numbers, the route that has been paved by you and others for people like me to be at this point is not one that is lost. I am grateful to my God and all of those who have weathered the trials and tribulations of this virus. The upsides that i refer to are on a very deep level and more in keeping with who I am. I refuse to be defined by a virus.

The battles that you and others have fought have brought us all to this day and I, for one, thank all of you from  the bottom of my heart!
Diagnosed in  May of 2010 with teh AIDS.

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Offline Lora

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Re: A differerent opinion
« Reply #16 on: February 15, 2011, 11:30:24 PM »
I don't see it as a blessing or a curse I just think it's sad that after all this time there's still so much stigma surrounding it.
Of all the illnesses there are HIV seems to be the most stigmatised, even after all these years people have so little knowledge of it- less than they did in the 80s!
I can't imagine what it was like in the early days with no medication and some guy with a phd saying 'sort your finances, time's running out' but it just shows the resilliance of people and the strength to fight.

 Its the long term survivors of this illness that give me hope, if it wasn't for you guys we wouldn't be as far as we are today. I'm just sorry for all the shit you had to go through.

Lora



Offline wolfter

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Re: A differerent opinion
« Reply #17 on: February 15, 2011, 11:50:53 PM »
Another queer with AIDS.  That was a common theme amonst people in the early days.  In those days, it was more important that my death certiciate read that I died of some moral illness than the reality.  My biggest regret is that I didn't have the strength back then that I do now.  Finally, I did find one positive that came about because of this lillness.  Slowly sipping the white and knowing I need to go to bed.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline leatherman

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Re: A differerent opinion
« Reply #18 on: February 16, 2011, 12:22:43 AM »
In those days, it was more important that my death certiciate read that I died of some moral illness than the reality. 
I hope the your death certificate doesn't have any cause listed just yet, my friend. ;) ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline AlanBama

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Re: A differerent opinion
« Reply #19 on: February 16, 2011, 11:27:55 AM »
Everyone's posts here have had a real impact on me.   Once again, all the negative things (the Dragon, I call it) float to the surface....the Dragon rears his ugly head once more.   Recently (at a funeral for a friend's mother) I ran into quite a few folks I went to school with.   (Isn't it funny how people that wouldn't have pissed on you if you were on fire in high school suddenly act as if they are your best friends !)
A recurring topic that came up was retirement.   "I only have 2 more years to go", one lady said.  "My husband already retired this year".   If I had been physically able to keep my job as an Auditor for the State of Georgia, I would now have in over 25 years of service, have a healthy salary, good insurance and benefits, and a retirement plan.   I have none of these things.   It hurts to have these reminders of what my life might have been, if it hadn't been for AIDS.  It causes an unbelievable and deep sadness in me, that I currently deal with by numbing my feelings with 60 mg of Paxil and 150 mg of Wellbutrin a day.   I have found that I can't cry anymore, and that's not good.  Crying has always been a great form of healing and release for me.

I'm sorry if this post is depressing, and don't want any of you to worry about me.  I am fine.   I'm a tough old wiry queen that has been through the worst life has to offer, so I am taking it all in my stride.  I'd be a major liar though, if I said it doesn't bring me down, being reminded of the "life that should have been".   To those of you who are recently diagnosed, and able to work, by all means continue to do so.   That is a major benefit that the new drugs offer, that we never had.  My hope for you all is that you can have the best life possible with HIV, and that you have to attend VERY few funerals.

Blessings, Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Online GSOgymrat

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Re: A differerent opinion
« Reply #20 on: February 16, 2011, 11:41:05 AM »
Alan, I just want to say I am so glad you are here. You help put things in perspective.

Offline denb45

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Re: A differerent opinion
« Reply #21 on: February 16, 2011, 12:03:38 PM »

During the years, I managed to survive the dreadful era of Reagan and Christian hypocrisy and mitochondrial toxicity from too many years on the early melds, when I took between 18 and 22 pills a day just to fight HIV.

I lived with constant diarrhea, kidney stones, anemia and liver complications. I now have high lipids, a buffalo hump, a neck that looks like a goiter, and the skinny, veiny arms and legs, the latter of which ache constantly because of a combination of peripheral neuropathy and myopathy possibly caused by CPK levels caused, at least in part, by meds to lower my lipids, and possibly the HIV meds I now take.

I can't see where "blessing" comes into play here. I guess it could be a blessing that I am still alive, if for no other reason, than to annoy others. ;D

HUGS,

Mark


Same here mark, but you look like most of us here, you look marvelous darling, and I'm in total agreement with HIV/AIDS not being a blessing, it's a blessing that some of us are still alive with all of the many other
current health problems that go along with still being here, Mark thanks for this post, we all need a little
reality check sometimes and a different perspective on things  :-*
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline David_CA

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Re: A differerent opinion
« Reply #22 on: February 16, 2011, 04:10:45 PM »
I think we all, especially those of us who are were diagnosed after the PI's and later meds were introduced, really benefit from these post from (those I affectionately term) 'old timers'.  I will likely never know the loss of hundreds or even tens of friends from this disease.  I haven't felt the despair, the lack of a future that many have experienced (except immediately after diagnosis).  I am able to work, and if I lost my job, it would not likely be due to HIV / AIDS.  I have not lost the support of friends and family except for possibly a coupled of FB's.  I've heard that I'm more likely to be hit and killed by a bus than die from HIV.  This is likely true, but I could still be hit by a bus or die from HIV complications.  When I think about what those who've lost so much and so many people in their lives have been through, it's all I can do to not cry.  I feel some guilt over my 'easy' HIV experience so far compared to so many others.  If I were in a different situation - access to meds, health services, judgemental family and friends - I would feel differently.

My life was 'on track' pre-diagnosis.  Not much has changed since my diagnosis except I've gotten married, become a bit closer to a few friends and immediate family, and returned to school.  I now have more medical expenses, future health issues, and have reduced lung capacity from PCP.  Obviously, those are negatives.  Somehow, though, I feel more positive since diagnosis.  It's not totally unheard of for people to feel more positive after negative life-changing situations.  I certainly don't feel the same anxiety toward infection now that I did pre-diagnosis.  I feel an odd closeness to other HIV+ individuals.  I seem a bit more at peace with myself, but I'm not really sure why.  I certainly feel more compassionate to others.  Others have told me that they enjoy sex much more post-diagnosis, and I tend to agree that it's better without the stress of becoming infected.

Do I see any good things that have happened in my life that are likely due to my being diagnosed positive?  Certainly.    Do I wish that I was HIV-?  Certainly.  Would I change it if I could?  Definitely.  I believe the experiences of those infected in the early years of this are so different from those who were infected later that there will often be a 'generation gap'. 




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Offline Buckmark

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Re: A differerent opinion
« Reply #23 on: February 16, 2011, 06:14:57 PM »
The way each individual views HIV and AIDS depends on its importance and effect on their lives.  Having had HIV since the late 1980s, it's hard not to remember the feeling of having no future.  Doctors told us HIV was a death sentence.  Confirmation of that was everywhere, both in the media, and in the friends I lost to HIV.  The proof and the devastation was all around us.  And for each of us with HIV, it was only a matter of time, but you just didn't know when.

Fast forward to 2011.  Effective treatments.  One-pill-a-day drug therapy.  But based on my experience, there's still a part of me that can't quite believe it.  Each time I take my meds, there is a part of me that doubts and thinks "I hope this is gonna work, and if it doesn't, I know what the consequences are".   And those consequences are still the same without access to medications -- death.  I'm grateful access to medications and that they are working for me.  But having had HIV in a time where there were no treatments or ineffective treatments, I can't forget what that was like, nor can I help that part of me thinks that I could be just a step or two away from that.

Maybe that's the deal with LTSers -- you just can't forget what it was like "way back then", and it was horrible.  I've tried to find ways to move on.  Therapy certainly helps, and I've certainly had plenty of it.  I certainly don't think HIV is to blame for every problem I have currently.  I wish I knew what was. 

Everyone is entitled to their own opinion, and this is mine.  And, all this said, I'm glad this conversation is taking place in the "Living With" forum rather than the "LTS" forum, because I don't want to build up walls.  I just want to be heard.

Regards,

Henry

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Joe K

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Re: A differerent opinion
« Reply #24 on: February 16, 2011, 08:59:25 PM »
As I read the replies from you LTS, maybe the difference with us, is that we never had an opportunity to develop any opinion regarding HIV, as once we tested poz, we were in a race for our very lives. For so many of us, we could not choose to avoid any avenue, or information source that may lead us to our next drug regime. I see the world of HIV today, with the expanded drug options, government agencies and ASOs and realize that we had to do all of that in the early days and we LIVED HIV, because there was nowhere to turn, other than to each other for the support we so craved.

I feel that my experience with HIV has imprinted me with memories that I will never shake and feelings that I may never overcome. I wish I could have done more, thinking that there may have been something, ANYTHING, I could have done differently, but the horror would not be conquered. Having HIV made me do things I did not want to do, but which my spirit commanded of me. Nobody told me there would be death bed sittings, or endless hours walking through hospital corridors, trying to bring some comfort to others. Or the fact that even when the daylight faded, the nights became a time of great horror, waiting for that phone call, that someone else had died, that almost always came.

The first ASO I ever worked with was FRIENDS Alliance in Detroit. It took us almost a year, to get a full board of directors, because members were dying faster than we could elect them. We bought a large wall memorial board, to hold brass name plates of our members who had died. There was space for 300 names. We filled that board in less than a year. Nobody ever prepared me for that, how could they? Add to that our constant battle with HIV personally, knowing your disease had no cure, nor treatment and there was nothing we could do to change that. Worst of all, in the 90s, with my health rapidly fading, was waiting for drugs that may save my life and it was a race to the finish and without PIs, I would have died long ago.

When I contrast that to HIV today, what I see are options, for the newly infected to limit the impact that HIV has on their life, an option that I never had. Am I glad that I helped to provide those options? Damn right I am, but then I think of all those I have lost and I get damn mad that there was nothing for them. The feelings of total impotence and hopelessness surrounded me back then and that I believe is the main difference between then and now.

In the earliest days of the plague, HIV became our life, not from choice, but by necessity. I am so happy that pozzies today have so many options, but I fear that too many people think that HIV will not kill them and I know better. I find it hard sometimes, to balance my views between what my experience demands and the ever changing world of HIV. I want to find that middle ground, between the newly infected and LTS and I have come to the conclusion that it may never happen, because I cannot forget, nor forgive some of the early years of HIV and there is no way to convey those emotions, other than to those that lived them.
« Last Edit: February 16, 2011, 09:02:03 PM by killfoile »

Offline MarcoPoz

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Re: A differerent opinion
« Reply #25 on: February 16, 2011, 09:21:18 PM »
Joe, Mark et al,

I'm not really in a space where I can articulate much right now--except to say that by the time Friends Alliance closed, we had four giant plaques filled with names.

Publically I still try my best at wearing the 'Poster Boy' costume as best as I can, and keep reaching to those newly comprehending their life as someone living with HIV to offer everything and anything I can.  Privately I vacillate between knowing I'm blessed to still be here, trying to live a life truly aware of how precious it is, and tormented by all the loss I have seen and experienced.

Some days are good.  Others aren't.

 


Offline David_CA

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Re: A differerent opinion
« Reply #26 on: February 16, 2011, 09:59:17 PM »
I find it hard sometimes, to balance my views between what my experience demands and the ever changing world of HIV. I want to find that middle ground, between the newly infected and LTS and I have come to the conclusion that it may never happen, because I cannot forget, nor forgive some of the early years of HIV and there is no way to convey those emotions, other than to those that lived them.

Perhaps, but you guys (and gals) do a great job of conveying those feelings and memories to those of us more recently diagnosed.  We may not always seem to listen, but the fact that many of us get so emotional when reading and hearing them shows that we are, and how great a job you all are doing.  I have always found great value in what you 'old timers' have to say. 
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Offline thunter34

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Re: A differerent opinion
« Reply #27 on: February 16, 2011, 10:54:50 PM »
In the earliest days of the plague, HIV became our life, not from choice, but by necessity. I am so happy that pozzies today have so many options, but I fear that too many people think that HIV will not kill them and I know better. I find it hard sometimes, to balance my views between what my experience demands and the ever changing world of HIV. I want to find that middle ground, between the newly infected and LTS and I have come to the conclusion that it may never happen, because I cannot forget, nor forgive some of the early years of HIV and there is no way to convey those emotions, other than to those that lived them.

Perhaps, but you guys (and gals) do a great job of conveying those feelings and memories to those of us more recently diagnosed.  We may not always seem to listen, but the fact that many of us get so emotional when reading and hearing them shows that we are, and how great a job you all are doing.  I have always found great value in what you 'old timers' have to say.  

David is right, Joe.  And why should the burden of finding all that sacred middle ground fall upon you and other LTS people anyway?  It seems to me that it should be the other way around.  You folks paved the way by making sure we actually HAVE the pills we swallow - not only by advocacy, but by being human guinea pigs for us.  You've all welcomed people like me into the fold, and offered me nothing but compassion and support - as well as education both practical and historical.  

I'm no LTS'er, but I can see that.  

I appreciate your intentions, but at a certain point it's just on them.

It really is.
« Last Edit: February 16, 2011, 10:58:59 PM by thunter34 »
AIDS isn't for sissies.

Offline Joe K

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Re: A differerent opinion
« Reply #28 on: February 16, 2011, 11:56:19 PM »
David is right, Joe.  And why should the burden of finding all that sacred middle ground fall upon you and other LTS people anyway?  It seems to me that it should be the other way around.  You folks paved the way by making sure we actually HAVE the pills we swallow - not only by advocacy, but by being human guinea pigs for us.  You've all welcomed people like me into the fold, and offered me nothing but compassion and support - as well as education both practical and historical.  

I'm no LTS'er, but I can see that.  

I appreciate your intentions, but at a certain point it's just on them.

It really is.

I hear what you and David are saying and I agree that us dinosaurs are beneficial in sharing our history.  However I disagree that the onus to bridge the gap between "LTS" and "Newbie" is on the newbies, because, with all due respect, what do they really know? Remember back to your initial infection and if you were like me, you did not know which way was up. When the newly infected comes to these forums, they are entering a different world and one that has been forced upon them, not chosen. They are angry, afraid and their heads are spinning and I like to think that us LTS provide some type of a foundation for them.

I will give back to our community until I draw my last breath and I know that to be effective, I need to reach the audience I have, rather than the audience I would like. I am also hardened beyond breakage, so I can accept the powerful emotions that all pozzies have when first infected. I also want to create a dialog, so that newbies understand that the fight against AIDS is quickly becoming theirs and theirs alone. Each year, more LTS leave us and there is nothing to fill that void. My hope is to try and fill just a small corner of that void because the challenges of HIV remain the same and without a sense of history, pozzies are at risk of becoming complacent and we all know know how that will end... badly.

Offline thunter34

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Re: A differerent opinion
« Reply #29 on: February 17, 2011, 10:37:09 AM »
I hear what you and David are saying and I agree that us dinosaurs are beneficial in sharing our history.  However I disagree that the onus to bridge the gap between "LTS" and "Newbie" is on the newbies, because, with all due respect, what do they really know? Remember back to your initial infection and if you were like me, you did not know which way was up. When the newly infected comes to these forums, they are entering a different world and one that has been forced upon them, not chosen. They are angry, afraid and their heads are spinning and I like to think that us LTS provide some type of a foundation for them.

I will give back to our community until I draw my last breath and I know that to be effective, I need to reach the audience I have, rather than the audience I would like. I am also hardened beyond breakage, so I can accept the powerful emotions that all pozzies have when first infected. I also want to create a dialog, so that newbies understand that the fight against AIDS is quickly becoming theirs and theirs alone. Each year, more LTS leave us and there is nothing to fill that void. My hope is to try and fill just a small corner of that void because the challenges of HIV remain the same and without a sense of history, pozzies are at risk of becoming complacent and we all know know how that will end... badly.

Yeah, Joe - I totally understand you.  I guess what I was mostly referring to is that particular type of newly infected that we've so often seen around here who not only refuses what he's given, but tends to sneer at the so-called dinosaurs.  The "who cares what Larry Kramer or any other old fart has to say" type.  The ones who will put their fingers in their ears to "la la la la la" drown out what they're being told and instead insist they won't have any side effects or problems.  The HIV Lite bunch, to be blunt..and yes, I said it again.  Maybe it's a defense mechanism, maybe just plain old bullheadedness, but we all know there is no such thing.

I guess what I'm still trying to figure out how to say is:  You can see someone going over a cliff and you can try to extend your hand, but if they won't reach back and still fall...you did all you could.

There ARE newly infected who hear you - me, David and Zach, for example - but there are others who just simply never will by their own choice.  It is no fault of your own.

AIDS isn't for sissies.

Offline Joe K

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Re: A differerent opinion
« Reply #30 on: February 17, 2011, 11:20:48 AM »
There ARE newly infected who hear you - me, David and Zach, for example - but there are others who just simply never will by their own choice.  It is no fault of your own.

I never claimed I had any fault in not reach the newly infected. I have a strong desire to reach them and all I am saying is I have learned that there is more than one way to approach a problem. What matters most to me, is that I remain effective in supporting the community.

Offline denb45

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Re: A differerent opinion
« Reply #31 on: February 17, 2011, 02:45:47 PM »
I never claimed I had any fault in not reach the newly infected. I have a strong desire to reach them and all I am saying is I have learned that there is more than one way to approach a problem. What matters most to me, is that I remain effective in supporting the community.

@ thunter YES, sometimes it's all we as LTS can only do ,  :-*  and @ Killfoile supporting our HIV/AIDS Community will always be a given, as we had to learn THIS yrs ago. for ourselves, no one showed us how
but respect should still be acknowledged, but sometimes it's not  :-*  If We did help someone in here, then
that's always a good thing  ;)
« Last Edit: February 17, 2011, 02:51:22 PM by denb45 »
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