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Author Topic: Survivor's Guilt  (Read 25031 times)

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Offline AlanBama

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  • Alabama: the 'other' 3rd World Country!
Survivor's Guilt
« on: April 11, 2007, 06:32:52 PM »
After all this time, it sometimes surprises me when I have feelings of "guilt" over being a survivor.    What triggered my most recent episode was seeing a guy my age that I went to high school with who is dying from bone cancer.   He goes to my church; they wheeled him in on Easter, and he looks so bad.   He's about 6'4" and weighs maybe 125.   He's been sick for a long time, and has battled cancer on and off for about 10 years I think.

I have been where he is now!  I should have something relevant to say to this man, who is dying.   But instead I stand there like a blubbering idiot and can't come up with anything.   And then the guilt floods over me....he has two sons and a wife who need him, why is he dying and why am I still living?   Intellectually, I know this is silly, but these thoughts are coming from my heart, not from my brain.   I just wish there was something I could say to him, to make some kind of sense of it all.  But I'm not sure that he knows I have AIDS, and that makes any kind of conversation along the lines of "I understand what you are facing" difficult.   Why should he believe that I know what it is like to be dying?

I ended up by saying "I hope you find peace".   It used to drive me crazy when people would call me or come by the hospital when I was close to death and say "oh, you'll get better I'm sure of it".   OK, so they were right....but they didn't KNOW I would recover, they were just saying that to make themselves feel better.

Just when I think I have conquered something, it hops up to bite me in the butt.  I am even chicken to send him a card, I hate those cards that are "suitable for serious illness".   As Jonathan says BULLSHIT, there is no card that is "suitable" for serious illness.

Am I the only one who still experiences this?

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 J.R.E.

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Re: Survivor's Guilt
« Reply #1 on: April 11, 2007, 07:23:05 PM »

I have been where he is now!  I should have something relevant to say to this man, who is dying.   But instead I stand there like a blubbering idiot and can't come up with anything.   And then the guilt floods over me....he has two sons and a wife who need him, why is he dying and why am I still living?   
Am I the only one who still experiences this?

Alan

No, your not the only one Alan. For all the years I was living healthy with this virus, and watching so many others pass on, from aids, or other causes, I was having these feelings of guilt quite a lot. I still do at times. I often wondered "why", or "what" makes me continue to go on. Or " what can I say". I was feeling almost freakish at times.

I am sorry about your fellow church goer. Words can be difficult to come up with at times.... I know this too well. Sometimes just a smile and a touch on a shoulder is what someone needs. I know....


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Lis

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Re: Survivor's Guilt
« Reply #2 on: April 11, 2007, 10:04:10 PM »
As stupid as this may sound.....

We go when it is our time...
God doesnt give us a break just because were sick... there is always more to learn

Tonight i felt like if one more person died... (you know the rest)

I will spend as much time on others in the next few days as i can.... God knows i have no answers.....
poz 1986....

Offline OzPaul

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  • a very blessed 29 year ltnp
Re: Survivor's Guilt
« Reply #3 on: April 12, 2007, 12:52:17 AM »
Hi Alan and thank you for this thread.

Words are difficult right now for me about this delicate subject. As a 20 plus year Long Term Non Progressor I have had and do have a lot of survivor's guilt. Participating in and reading these forums daily reminds me of the good, blessed grace I've been given. While I have my own sometimes serious health concern, having bi-polar disorder, I have miraculously been spared a different  HIV outcome, at least as of today. That could all change tomorrow. I am mindful of that daily.

I participate in several research studies on LTNP's both here in Australia and the USA in the hope and prayer that we all (globally) may all have the same good HIV health as I do today. Until then I get by well, gratefully with some shame and survivor's guilt.

in Peace and Love
Paul

Offline ARMANDO

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Re: Survivor's Guilt
« Reply #4 on: April 12, 2007, 07:30:37 AM »
i dont think that i have ever experienced guilt that i am still alive but i have often questioned "why am i still alive"?ALL my friends have died from aids and it seems that i am the last one left and it sometimes makes me so sad and it is very difficult to make new friends because we feel that we cant share our "secret" or they wont understand.I HAVE TRIED TO BE UP FRONT WITH NEW PEOPLE BUT THEY ALWAYS SEEM TO DROP ME ONCE THEY FIND OUT THAT I AM HIV POZ.I HAVE BEEN LIVING WITH HIV FOR THE PAST 18 YRS AND I GUESS THATS WHY I'M STILL ALIVE,I REFUSE TO DIE FROM AIDS!!!

Offline Benc7

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Re: Survivor's Guilt
« Reply #5 on: April 12, 2007, 08:14:20 AM »
When I was diagnosed 17 years ago there was no "Why me?" moment.  Instead there was a "Well, of course, why NOT me." I experience no survivor guilt; I don't even know what that means.  This is just another indication of the randomness of human life: you live, you die, you get sick right away, you get to live another 20 years, you're born rich, you're born poor.  It's the big roll of the dice; you lose some, you win some.  There's no guiding hand in any of this, no plan, no destiny.  It's just life, as unfair and as arbitrary as it is.

Offline DanielMark

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Re: Survivor's Guilt
« Reply #6 on: April 12, 2007, 08:34:08 AM »
We go when it is our time...
God doesnt give us a break just because were sick... there is always more to learn.


My belief exactly, Lis.

Maybe that's why I have had moments where I question why I'm still here, but never felt guilt about anyone else dying. Death is as natural as birth to me, so guilt doesn't factor into it. Regret, remorse, sorrow, but not survivor guilt.

I donít try to know the mind of God, I only try to accept life on lifeís terms and live the best life I can while I still have the chance to.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Grinch

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Re: Survivor's Guilt
« Reply #7 on: April 12, 2007, 09:01:55 AM »
I'd have to say that this is a normal feeling.  Everyone I know that has lost friends in combat feels this way. That was something I personally learned to live with.  What I haven't really come to grips with is my first room mate in the hospital for chemo.

The guy was an inspiration to me and set the tone as to how I would handle the pain of chemo. He giggled and made jokes while they were injecting drugs into his spine.  When my turn came separated by only a curtain he continued to joke with me.

  We both fought against very poor odds.  I lived, he died.  Rare is the day I don't spend a moment thinking of him. Even more rare is the day I don't feel guilt about being the one that survived.  Combat was a mixture of luck and skill.  This however is different. It's something I can't justify.  It is a heavy burden.

  I think it's healthy to remember and to honor, but we must go on.
When ever I see a daytime moon I spend a moment saying hi to lost friends, those that are alive somewhere may be doing the same.  Those that aren't, well I'm sure they know I'm spending a brief moment saying hello, I'll see you soon enough.

Offline Moffie65

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Re: Survivor's Guilt
« Reply #8 on: April 12, 2007, 09:25:59 AM »
Alan,

I think this runs really deep in our souls and deep in our early life programming.  I have at times had survivor guilt, but it was early in the experience of being HIV+ and not so much recently.  I also think it really applies to us when we are feeling like we don't matter to the world any more and why are we still here to carry on when others who were active and living apparently relavent lives come to the end of their physical trip. 

I have some deeply seated feelings about destiny and about how our lives are programmed and I have been in places where I should have died but I was left here to carry on.  So, when you start feeling guilt, acknoledge it and move on.  Settling into a negative place and emotion will do damage and make that guilt grow into stress and on and on and on. 

Alan, you come from a deeply Christian background and I cannot help but think that maybe some of the survivors guilt comes from that, but I just don't have any clue as to why.  Does that make any sense?

This is all I have this morning.

Love,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline ademas

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Re: Survivor's Guilt
« Reply #9 on: April 12, 2007, 09:53:00 AM »
I don't think I've experienced survivor's guilt.  I think I see it much like benc7:

Quote
This is just another indication of the randomness of human life: you live, you die, you get sick right away, you get to live another 20 years, you're born rich, you're born poor.  It's the big roll of the dice; you lose some, you win some.  There's no guiding hand in any of this, no plan, no destiny.  It's just life, as unfair and as arbitrary as it is.

That, and whether you live 20, 30, 40 or 90 years, it's just a blink of the eye.

I think what I do experience from time-to-time is just a profound sense of loss--the loss of my friends (i.e. family) and lovers, and the loss of what might have been, the life we might have had.

« Last Edit: April 12, 2007, 10:02:21 AM by ademas »

Offline AlanBama

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Re: Survivor's Guilt
« Reply #10 on: April 12, 2007, 10:47:33 AM »
Tim, you're probably right that "guilt thing" is a Christian hold-over...you know they can be great at "guilt tripping" you into doing all kinds of things and feeling certain ways...

I didn't articulate it very well, but some of you mentioned that you mainly feel "why me?", and wonder why you are still here?   I go through that at least once a week...and as someone has said, that is just life.   It just is.

I try to get my mind focused on gratitude whenever such feelings come up, but sometimes it takes me awhile to get the wheels turning.   I have much to be thankful for, and it helps to remember that.
"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 Bucko

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    • The Spin Cycle
Re: Survivor's Guilt
« Reply #11 on: April 12, 2007, 10:57:23 AM »
I suffer from both survivor guilt and survivor rage, but try to refrain from the "Why-me"s. It's all part of the plan.

Brent
(Who belives that fate rules)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline dad1216

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Re: Survivor's Guilt
« Reply #12 on: April 12, 2007, 11:05:59 AM »
I agree with Lis, we go when its our time.  I really have the guilt of why I am still here.  I feel so guilty putting my kids, family, and friends through this.  I feel guilty of dying in front of them, for what my boys have, and are going through, for my options running out.     
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline Joe K

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Re: Survivor's Guilt
« Reply #13 on: April 12, 2007, 01:06:51 PM »
My father once gave me a piece of advice, in that he said "What-ifs can kill you?"  At the time he was referring to my apprehension about my impending divorce, which had my mind racing with all these what-if questions.  His advice centered on the fact that we live the life we have, we make choices and at some point we just have to accept them (right or wrong), minimize the effects and move on.  I have never felt survivors guilt, just endless sorrow for the loss of all my friends.  When I find myself becoming a little down, with the why me stuff, I turn it around and think, why not me?

I cannot describe it, but it seems to me that there is some type of core existence that develops within people who live with HIV for long periods.  It's the same wiring that allows us to thrive, even against great odds.  Maybe it is Fates' way of keeping us humble, causing us to pause on occasion and review our lives and the choices we have made.  No matter what, I believe that these feelings are firmly rooted in the abject hopelessness that most of us lived through.  Subconsciously I think it is hard to tell yourself that you are worthy of life, when all these other people, with the same disease, and just as worthy of life as you, have died.  I suspect this is an internal struggle that we are unable to resolve and so the doubt lingers in the form of what-ifs.
« Last Edit: April 12, 2007, 01:12:41 PM by killfoile »

Offline dixieman

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Re: Survivor's Guilt
« Reply #14 on: April 12, 2007, 05:44:58 PM »
I am just thankful that I have been given 16 years since my diagnosis... I do not take everyday for granted as in the past.... we are all here on a limited time basis... I am glad I chose a path to see the positive ... and to make myself a better person... although at times we all realize our short-comings ... I appreaciate each and every moment given to me

Offline J.R.E.

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Re: Survivor's Guilt
« Reply #15 on: April 12, 2007, 06:33:02 PM »
I am just thankful that I have been given 16 years since my diagnosis... I do not take everyday for granted as in the past.... we are all here on a limited time basis... I am glad I chose a path to see the positive ... and to make myself a better person... although at times we all realize our short-comings ... I appreaciate each and every moment given to me


Couldn't have said it better !!  Just want to add, I have certainly became a more stubborn person in these past 22 years.(especially in these past 3 and a half years) After a while,You get a very tough skin..., you find out how much backbone you have... You have to ! I believe that is safe to say, for anyone, dealing with a life threatening illness.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Miss Philicia

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Re: Survivor's Guilt
« Reply #16 on: April 12, 2007, 06:57:38 PM »
For some reason I don't have any guilt issues with this topic. 

Sometimes, and I know this is perverse, I have a tinge of guilt for not having any guilt. 
"Iíve slept with enough men to know that Iím not gay"

Offline bear60

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Re: Survivor's Guilt
« Reply #17 on: April 12, 2007, 07:13:22 PM »
Philly.....
Seems that is guilt none the less. I dont know if it matters what the feeling is ....we call it survivor's guilt...but it could be called grieving couldnt it.
I feel this a lot.  Its hard to go anywhere without remembering friends who have died.  Almost every place I go I see someone who might resemble a lost friend...or I remember that the last time I saw someone was RIGHT THERE.
It has become more and more kind of "bitter sweet".  Even tho I think about a departed friend and it makes me sad...I am happy that I remember them.   Maybe that is how survivors guilt works.
Poz Bear Type in Philadelphia

Offline Miss Philicia

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Re: Survivor's Guilt
« Reply #18 on: April 12, 2007, 07:20:44 PM »
I guess.  I just say I don't have any of this survivor's guilt because it's not something I think about, hence I have no guilt.  Anyway, why should I feel guilty?  I've still suffered considerably through the ordeal, I really don't feel like piling more utter dirt on my plate.
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: Survivor's Guilt
« Reply #19 on: April 12, 2007, 07:24:03 PM »
btw:  I'm not at ALL judging anyone that has these guilt feelings, I recognize this is a big issue with many.  So I do not diminish it, just remarking that for some reason I don't seem to have it.

I can't help that I'm still alive.  I just am.  I think it's my inner existentialist being.
"Iíve slept with enough men to know that Iím not gay"

Offline AlanBama

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Re: Survivor's Guilt
« Reply #20 on: April 12, 2007, 07:58:53 PM »
Like Tim, I had a lot more guilt in the earlier years; I have adjusted my frame of mind quite a great deal since then, but as I say, sometimes a situation such as the one I talked about above presents itself and BAM, the guilt comes rushing in.

I know that I certainly have nothing to feel guilty about.   I paid my dues, and then some.   But "knowing" that a feeling is irrational, and "feeling" that irrational feeling are two different things.

Like Bear, things that remind me of friends and family who have passed on tend to put me in a bit of a melancholy state of mind, but I will admit that with time, the grief is more "comfortable", probably just because it is so much more familiar.
"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 RAB

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Re: Survivor's Guilt
« Reply #21 on: April 13, 2007, 12:03:04 AM »
Hi Alan:

Like you I'm not sure I would have ever been able to say something to your high school mate dying from cancer that was really impactful.  I guess I would have struggled just as you did.  In fact I know I would have. 

The issue of survivors guilt is something I've battled with a lot.  Sometime more intensely than others.

For me, ( and I think Bear mentioned this too), there's an element of grief involved, like you, there's an element of question as to why I survived and others didn't, like Joe, there's also a realization that "guilt" just isn't the appropriate phrase for the emotion we experience.

But, what I think I've been doing is throwing all of those emotions into one pot and labeling them as "survivors guilt" when in fact theres a lot more going on. 

Sometimes there's a feeling of insecurity.  "Is this all some sort of sick joke?  How could I have possibly survived when others didn't?"

Sometimes there's a feeling of grief.  My god that person looks like Ed.  Resulting emotion, grief.  "Oh how I miss him."

Sometimes there's a feeling of rage.  "What the fuck happened?" "Why the hell did we have to suffer this?"  "It isn't fair!"

Most times it's a little of all of that.

I've recently come to the realization (acceptance?) (understanding?) that what we all went through was very traumatic.  Traumatic beyond words that most of us could ever express.  That trauma has left some very real and important scars on who we are today. 

When we least expect it, the scabs can get ripped off and the pain can once again become very real.

We aren't guilty of anything.  We're living with the trauma, we're struggling with the uncertainty, we're gradually learning to cope and move on.

Or at least that's how I see it.

RAB

Offline DanielMark

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Re: Survivor's Guilt
« Reply #22 on: April 13, 2007, 04:00:00 AM »
I've been considering this thread since yesterday, and I also think survivor grief more accurately describes what I feel at times. Guilt is for the guilty, and what have I done to feel guilty about?

I grieve that some friends hastened their death by abusing their health, or that drugs were not available to help them. I grieve that things did not turn out differently for them, but at the same time Iím glad they no longer suffer. Would it be too shocking to admit there are days I actually envy that?

I find music can be a powerful force in helping me work through the grief I feel about loved ones lost, even after many years. There is a song Josh Groban sings called ďTo Where You AreĒ that brings memories of them churning in my mind and I momentarily relive that feeling of loss, if only on a level deep inside me.

Who can say for certain
Maybe you're still here
I feel you all around me
Your memory's so clear

Deep in the stillness
I can hear you speak
You're still an inspiration
Can it be

That you are mine
Forever love
And you are watching over me from up above

Fly me up to where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for a while
to know you're there
A breath away's not far
To where you are

Daniel
« Last Edit: April 13, 2007, 04:21:04 AM by DanielMark »
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Miss Philicia

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Re: Survivor's Guilt
« Reply #23 on: April 13, 2007, 03:09:11 PM »
Thanks RAB for that post.  By breaking things down to those three more specific emotional triggers I can say I definitely relate to some of those.  Perhaps my idea of "survivors guild" as a terminology was simply different, or I perceived it as such.

I do definitely think that in terms of LTS, there are many mental health issues, or facets of them, surfacing as we move into this "surviving everyone else" territory.  I kind of just call it a general "Survival Fatigue" (removes any guilt... maybe I just don't like that word) and I will definitely admit to the fatigue. 

I'm also convinced that I have a form of post-traumatic stress disorder from being on the battlefield, like any soldier returning from the war zone.  I would assume almost all of us feel that, at least in varying degrees.  Anyway, it's why in a nutshell I'm just mentally tired all the time, even as my physical self has improved immeasurably over the past 12 months.  As yet I have found no easy answer for addressing this, though it seems to be slowly improving, which of course is better than it getting worse.
"Iíve slept with enough men to know that Iím not gay"

Offline Boo Radley

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Re: Survivor's Guilt
« Reply #24 on: April 13, 2007, 04:20:58 PM »
I've dealt with survivor's guilt for almost 20 years while I floated along in great health with no problems and no meds and many friends and associates suffered from AIDS, meds, and the many indignities this disease heaps on its victims.  "Why me?" is still a question I regularly ask. 

I know this is probably ill-advised to broach but one of the ironies for me as a long-term slow progressor is that most of my life I've dealt with suicidal tendencies.  I was telling philly (I think...) yesterday about how one day as a teenager I fastened a rope to a cross-beam in our garage and had just started making a noose when my mother walked in.  I convinced her I was exercising and that damned rope hung there for several years mocking me.   Like Dorothy Parker I am destined to live to a ripe old age whether I really want to or not.  Poor Dotty.

I'm sorry to go off on this other tangent but survivor's guilt of another kind has plagued me for a couple of years and contributed to my state of mind for as long.  Many of us who survived hurricane Katrina unscathed feel great guilt and mourn the losses of family and friends whose entire lives washed away.  When I drove by the home my favorite aunt and uncle lived in over 50 years and saw it was completely destroyed that was the last time I viewed the destruction first-hand.  I iwish I hadn't seen it at all.  One of my sisters also lost everything and was "lucky" enough to have a $20,000 renter's flood policy.  My other sister lost most of her belongings but, being even more imbalanced than I, insisted on hauling tons of her waterlogged junk to my house, where much still sits today.   When she started bringing home "good food" she'd found outside looted stores I put my foot down.   Her "one week stay" which turned into six months ended when she got her FEMA closet, I mean trailer.  Again, sorry for the hijack but I thought Alan and a few others might understand first-hand. 

String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write © 2007 Sweet Old Boo, Inc.

Offline jack

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Re: Survivor's Guilt
« Reply #25 on: April 13, 2007, 04:31:03 PM »
It sure hasnt been boring. I personally dont know anyone who has died from HIV but I did spend many hours in Drs waiting rooms in late 80s,early 90s and it was a very sobering experience that I never want to relive.
I spend way too much time thinking about "what ifs" and "what could have beens". I fight it everyday,but no survivor guilt. Since I discovered I was HIV positive two of my best friends have died from natural causes(too much whiskey) and a third went insane. I am the only one left living from my regular golf foursome. Go figure.
I have found the harder I work the less time  I spend  thinking about the past.

Offline Ody

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Re: Survivor's Guilt
« Reply #26 on: April 13, 2007, 06:16:04 PM »
I think survivor guilt and survivor fatigue is, for me (21 years) at least, two different things.

I've been through the survivor guilt, I felt I didn't deserve to make it, all my friends and HIV family where more deserving. I got to the point I quit taking my meds. They really weren't doing much for me anyway at the time.

Survivor fatigue, I think I'm going through that now. Can't really explaining it.

I know, being the last surviving member of my original support family, we lived together, fought with each other, enjoyed life together, spent holidays together, and only had sex with each other, our way of not infecting anyone else. I'm lonely! Few get my jokes and when I reminiece out loud I get strange looks and told I'm nuts. We weren't nuts, we where enjoying every second we could!

You know we used to laugh and turned surviving into family status thing. It coincided with the dignity of being fashionably late, the family member that was the last one standing was the most fashionable and extremely late to the party! We even turned a bar show trophy into a trophy and it belonged to the last survivor, present it to yourself bitch, I'm in heaven having a cocktail.

Now that trophy sits on my entertainment center, the winged winner constantly reminding me of all the Von Climax family. I know they are all with me trying to force me to hold on, carry my head high, if for the sake of the family name only. I guess, through the tears, I can hearing them off in the distance somewhere, cheering me on.

I hope that makes sense, I guess as Billy Joel says, sharing a drink of loneliness but it's better than drinking allone. 

Ody
Take a deep breath and forgive yourself, no since in you making it harder, that's someone else's job and you know they are more qualified, just ask um!

Offline AlanBama

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Re: Survivor's Guilt
« Reply #27 on: April 13, 2007, 07:37:09 PM »
Great posts, everybody.   I am so thankful for this forum, and a place for mature, sane discussion.

Maybe we have a whole new "syndrome" -  HIV Long Term Survivor's Syndrome, that encompasses the guilt, the PTSD, the grief, the whole nine yards....
"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 RobT

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Re: Survivor's Guilt
« Reply #28 on: April 13, 2007, 08:42:07 PM »
Alan-
I do not know if it is guilt setting in or comfrot just to slow down the stress of my life, but I have begun going to church. I have been going on and off for seems like forever. Due to a previous car accident and other situations, I have begun going to church more often. I am not baptized anything as of yet. I will by next Easter.

Rob


Current meds: Atripla
VL: undetectable
CD4: 630

Offline aztecan

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Re: Survivor's Guilt
« Reply #29 on: April 13, 2007, 09:42:14 PM »
Wow, great posts.

Ody, I can understand fully where you are coming from. A month or so ago, I posted one of my clients had died.

That client, Stanley, was one of the members of the original support group here. I am another. Now, I am the only surviving member.

I used to think, "Why me?" but not so much any longer. I miss those who are no longer at my side, but I no longer question why I have survived all these years and others have not.

I don't know if it is acceptance or just what, but now I just acknowledge my memories, enjoy the momentary warmth they bring to my heart and the twinge of sadness and loss I feel shortly thereafter.

All of us who lived through the pre-cocktail era carry scars of that time. There is no way we could not.

But I find great solace in the knowledge there are still people out there (or, should I say, here) who understand, don't think I am being morose, whiny or am only living in the past - all of which has been said to me.

I think I rather fit the term survivor's fatigue better these days.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline 30Years

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Re: Survivor's Guilt
« Reply #30 on: April 18, 2007, 02:05:22 PM »
Mannnnnnnnnnnnnn tell me about it.  I have the feeling of "The One Who Survived" Syndrome all the time. 

Offline mudman8

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Re: Survivor's Guilt
« Reply #31 on: April 19, 2007, 01:13:40 PM »
I remember when we didn't know what it was and my lover and i went to somene's house in LA and I being a gardener wanted to see the back yard where the landlord lived, I noticed him on the porch and siad Hi knowing he'd just lost his partner. My lover followed me and ushered me out. I swore I'd never do that again, leave someone alone, but 10 years later I was at a great art exhibition at MOCA and suddenly a guy walked by that was gaunt and spotted with KS. I saw myeself in his eyes, it shook me to my core, I just kept walking and now kick myself for having not stopped to talk.

I have the long term syndrome and feel lucky that I'm as "healthy" as I am. I even fell in love last summer with another man I can't have as a  life partner as he already has one, but he comes around every 2 weeks when he's able to cat around, keeps in touch when he can't be with me and I'm so thankful for every meeting we have. Somehow I feel that that is the reason god didn't let me die, to learn what great love is like. it only took 24 years of being single to find the right one. LOL

I try to make something of myself in my retirement even tho my parents want me to work I feel better creating art so that's what I foucs on. Haven't sold anything yet, but hoping to enhance my financial situation that way. This summer I'm going to take a seminar coming to LA for men in mid life transition.

I miss my friends from when I was 20. I might even have better feelings toward my ex if he were around.....

nah!

Glenn
Life is analog

Offline kellyspoppi

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Re: Survivor's Guilt
« Reply #32 on: April 19, 2007, 07:28:33 PM »
i have been captivated by the discussions around this issue of survivors guilt. several posts caught my eye, but the first was from alan who started us on this journey of rememberence. alan, please remember your quote from oz, as you are expressing gratitude thru the good deeds of posting on this site. others are learning thru your posts.
what angered me about your original post, and what has angered me about living with this virus since day 1,  was the feeling you had that you could not talk to that man about your living with hiv. we LTS's have allowed the stigma associated with this disease to keep us from talking to others about life threatening illness as if ours doesn't matter,  or count! when bucko and RAB talk about survivors rage, that is what my rage is about.
philly has compared surviving our life with this disease to that of soldiers who made it back home. my recent column in april's poz "flags of a father" made the same comparison. yes, we are suffering from PTSD, seeing the look of death in the eyes of fellow support group members, and just when you thought you saw enough, shed enough tears, lost enough friends, another dies to rip the scabs off those old scars. the only guilt i felt this last time(death of an aids warrior) had more to do with not having any tears left to shed.
back to my rage. RAB states, why the hell do we have to suffer this way? it isn't fair! dam straight...why are we living with a disease that we can't feel comfortable talking to anyone about? how many years do we have to live that way?  aren't you fed up with that bullshit? i know i am.
reagan hofmann announced the "positive project" at the staying alive conference in N.O. last december as a chance for positives to do something to reduce the stigma. she said it was time for others to fear the virus, not us.
i participated in this project and it was so liberating. i felt like a huge weight was lifted off my shoulders. for the first time i finally feel like i can truly say "screw it". i have hiv, now deal with it. i am fed up with keeping that info to myself when it might help others.
i know it helped my older sister battle breast cancer for nearly as long as i have had hiv. when she came out of her first remission, she looked to me for advise on how to remain positive with a life threatening illness. imagine how i might feel  if i prevented my sister the value of my life experience because of stigma.
enough is enough.
liberation is healthy. lets be proud we have survived this long and be willing to share it with the outside world. enough of this stigma.
the only thing we should be guilty about is that we let STIGMA continue to rule our lives!
kellyspoppi   

Offline AlanBama

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Re: Survivor's Guilt
« Reply #33 on: April 20, 2007, 10:10:50 AM »
thank you kellyspoppi, your wonderful post may be just the "kick in the pants" I need to stop keeping my virus a secret.    I truly would love to be open about it, honestly.   I know how liberating the truth can be.   

Two things I am most fearful of:  losing my part time job, which unfortunately I need to pay the bills, and losing my apartment.    You have to remember I do live in Alabama, and things are a bit behind the times here (like 20 years or so behind).

hugs,
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 kellyspoppi

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Re: Survivor's Guilt
« Reply #34 on: April 20, 2007, 11:01:22 AM »
alan, thank you for that.
this was a longtime process for me, and i feel everyone will come to this feeling in their own time.
i understand employer and housing fears as well. although the housing issue has never been a concern of mine, i worried about upper management response for years before i came to this place in my thought process and i also was very worried about my customers (insurance agency) and how they might think.
i have been slowly be surely speaking in public about living with hiv and my name has been used in print media and mentioned on radio to where i no longer feel it's a secret. no backlash in over 20 years, except for what i wrote about in my april poz piece "flags of a father". figure the military to use it against me? what a surprise! NOT
anyway, i hear the southern aids coalition is doing good work down south. you may want to look them up and see if they have some type of law project to reference your concerns with to become familiar with your rights as an employee and as a renter.
hopefully a chance to sit with them or the ACLU will provide you the necessary info to strip you of those fears.good luck!
kellyspoppi 

Offline sierrarancher

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Re: Survivor's Guilt
« Reply #35 on: April 21, 2007, 12:55:27 AM »
Only friends who have lived the twilight zone of LTS may be able to relate to this 'guilt'.  I met a guy about 3 years ago, a friend of a friend.  This guy, D, and I became friends.  We both came out to each other about being HIV+, which made an even closer bond.  D was the same age as me, 47.  When we first met, he was in a LTR.  Shortly thereafter his partner, also HIV+ had a severe stroke and still has not fully recovered to this day.  D spent days at his partner's bedside in the hospital, until the partner was sent 'home' to his family in Illinois (I live in Calif). 

D had mentioed that he wasn't on HAART because he didn't have insurance.  I mentioneed that there were resources and the importance of HAART. 

In summer 2006 D began HAART.  In Dec 2006 he was diagnosed with non Hodgkins lymphoma.  In the very same month, I get my regular email from Aidsmeds.com with an article saying that there is a study showing that persons on HAART have a higher risk for developing lymphoma.  Actually I began HAART in 1996 and had Hodgkins disease beginning in 1998. 

D was doing well on chemo, much better than I did.  I visited him in the hospital before Christmas.  The very time I'm in the hospital his doctor comes in and says that they have to remove the growth on his brain surgically.  D had mentioned that there were some lesions, but didn't know until that moment that surgery was the treatment.  Bombshell.  I even stopped the doctor, and said that I was only a friend, did he want to discuss this with D privately.  The doctor (idiot) stopped and asked D, who said, it was fine if the discussion went on while I was present.

D had told me that since I had survived lymphoma, I represented hope to him.  I never mentioned the article I got from aidsmeds.com 

Things seemed to be ok for D in 2007.  We exchanged phone calls and email through February.  Then in March I get a phone call one evening from D's sister.  D is in the hospital, his liver and kidneys have failed, and he cannot speak but wants to hear my voice and can I please speak to him, just say anything.  Basically she told me he was dying and then I had to make small talk with my dying speechless friend.  She came on the phone after a bit and said that he was smiling.  That night he died.

I really miss him.  And as far as guilt is concerned, I don't know if the HAART caused his cancer or not.  I know I wish I wouldn't have advised him to go on HAART though, 100%.  He was a non-progressor.

So I feel really guilty about that.

As for surviving, I don't feel guilty, I feel alienated.  My 20 year HIV journey has been a closet within a gay closet.  The tools I learned to survive being gay (long before it was accepted), were tools I could use for dealing with HIV.  I don't feel guilty about being gay, I don't feel guilty about being HIV+, I sure as hell wish life were a bit easier. 

But, there are too many people who care about me (and us) to give into a pity party, so I find room to breathe in places like this forum, the internet, laughter, travel, my dog.  It takes a lot of work. Thanks to all of you for sharing here.     

Offline kellyspoppi

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Re: Survivor's Guilt
« Reply #36 on: April 21, 2007, 01:25:16 PM »
hey rancher,

thanks for sharing that story. so sorry it turned out that way.

the hardest thing i have had to deal with is going to the hospitals or homes of my fellow warriors who have lost their battle. it brings me back to the early 90's when so many were dieing. because of our support system in those old groups, you obviously felt an obligation to be with them in their darkest hour.

just walking into their rooms knowing what you were about to see wasn't going to be pretty was difficult enough. worse than that though was the feeling it gave you when the visit was over and now you were by yourself thinking "when is this s__t going to start happening to me?"

the mental wear and tear with each of those visits was  physically draining. it wasn't survivors guilt i was feeling then. it was fear for my own life!

just a few weeks ago, a fellow advocate and a good friend of the upstate ny plwa advisory committee past away. he had been dealing with esophgal cancer. he had been going through chemo,  and seeing him each time, the further into the treatments he was, the more difficult it was to handle mentally.

their came a point when he sent me an e-mail letting me know that the treatments weren't working and that he decided to let go. that was the hardest e-mail i ever had to respond to. what do you say, right rancher?

i decided to spend a few days thinking out what i knew then would be my final words to him. not an easy thing, but necessary. knowing i could not summon up the courage to go see him, i choose to let him know through written words what he had meant to me in my life. what a cop out........ not survivors guilt, though.

i just choose to remember him the vibrant aids activist he was, not what some inrelated illness reduced him to. having just lost my older sister in a similar way the year before, i couldn't bare seeing it again.

for many of us LTS',  our wounds are as raw as they are deep. i have fought the good fight trying to outfox this beastly bug, and i don't wish to be reminded up close and personal what it eventually has planned for me!

thanks again for sharing rancher.

kellyspoppi     

Offline AlanBama

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Re: Survivor's Guilt
« Reply #37 on: April 21, 2007, 02:35:17 PM »
Rancher,

your story made me cry......

We can only trust that your friend is in a better place.

Love,

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 kellyspoppi

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Re: Survivor's Guilt
« Reply #38 on: April 26, 2007, 10:57:30 AM »
hey alan,

just got back from aidswatch and my annual treck to DC for more aids funding.

had a chance to run into a fellow activist from mississippi who works for aids action mississippi and is collaborating with the aclu there putting on forums for hiv/aids related discrimination issues. she said to e-mail her and she might be able to provide you with a alabama chapter of the aclu doing the same kind of work.

her name is valencia & u can e-mail her at "robinson@aidsactionms.org" there organization is out of jackson, and although i know we are talking 2 different states here, they are familiar with the issues you are concerned with, and may have similar type contacts for u to reach in bama.

hope this helps,

kellyspoppi

Offline Iamrick

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Re: Survivor's Guilt
« Reply #39 on: April 27, 2007, 12:37:46 AM »
Alan,
  I lost my partner David last august to AIDS. He and I had 12 years 24/7 together. We were rarely apart from each other. Well 10 months has past now
and I'm still crying and hurting over the loss and yes, I still feel very guilty. I was one those people telling him he was going to be OK too. I could not admit to myself that he was dying. I could not imagine my life without him. I'm feeling like I let him down by not insisting on him going to the doctor and taking his meds. If I had, maybe he would still be here. There are so many other reasons as well. I think it's just part of being human. We all feel guilt for those we loose it is a part of grieving. My question is, how do you move on with your own life when you've lost the only constant in your life? At this point months later, I have become a prisoner of my own home. I don't leave the house unless I just have to. The few friends that I have call and try to get me out of the house but I cant seem to bring myself to do it. My grief is why I'm on here right now.
It's driving me crazy and I don't know what to do. I feel as though I died right along with him. I listen to the radio and I will hear a song and it triggers this deep emotional outbust and it's the same thing watching TV. There are so many triggers that unleash this overwhelming grief in me. I think that's part of my problem with getting out, I'm afraid I will loose it in the middle of the store or where ever I might be at the time one of those triggers is pulled. My heart  goes out to you. You are not alone!!!!
Have a blessed day to all that read this, Rick
Happiness  keeps You Sweet,

Trials keep You  Strong,

Sorrows keep You  Human,

Failures keep You  Humble,

Success keeps You Glowing, 

But Only God/Goddess keeps You Going!


Have a Blessed Day Everyone!! Rick

Offline AlanBama

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Re: Survivor's Guilt
« Reply #40 on: April 27, 2007, 10:33:39 AM »
Rick,

I posted in your thread about losing David.

Blessings to you, my friend.

hugs,

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 kellyspoppi

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Re: Survivor's Guilt
« Reply #41 on: April 27, 2007, 11:20:05 AM »
rick,

i just sent a reply post to betty in "where do we find the strength" topic, which i recommend you read as a possible means of help for your situation.

the grief and loss situation was the hardest thing i had to battle through. in my case, my fiance (whom it got the virus from 22 years ago) died so suddenly, without warning, that i felt like i hadn't had a chance to say goodbye. not having that opportunity can wear you down, as many folks who have lost loved ones in an accident will tell you. not feeling lke you had that last chance to tell them "i love you" & "goodbye" makes it extremely difficult to let go of that person.

in your case, having those guilt feelings like you could have done something to help prevent their death, can be just as draining.

now most folks here might think i'm nuts for saying this, but i mention it because it worked for me, and that is getting in touch with a decent psychic/medium. how do you know if they're decent? my reply would be to first check with several of your friends and see if any have used one in the past.  if not, look for stores in your area that promote self help books and products. many of them may have business cards or knowledge of psychics in your area.

however you locate one, the true test comes from your reading. i have used the services of 3 different psychics over the last 22 years, and in all cases, they revealed a fact to me that upon hearing it, i went "wow, how the hell did they know that?" to me, if they say something that in my mind there was no way that person could have known that info without having a connection to the otherside, then i would say they were someone uniquely qualified.

i'm sure you have several questions you need answered by the partner you have lost, and that without gaining the answers to those questions you are not able to move on with your life, and regain your sense of purpose. i was in such a state of depression after my fiance and father died, i was heading down a path of self destruction.

after undergoing a lengthy cleansing meditation first,  she made that final connection through my first experience with a psychic/medium. during the course of my reading, she gave me the chance to say goodbye and hear my fiance and my dads final messages to me.

when i left her home that night, all i can tell you is that i had the biggest smile on my face and the weight of that depression was lifted from my sole, never to return again.

if this is something that you are open to, yet want more info about privately, you can send me a personal e-mail to "kellyspoppi@aol.com".

i realize there are many skeptics and non-believers of the abilities of psychics/mediums, and i will agree that some who make it a practice may not be on the up & up. but when you have sat with one who is, and you hear that message that only your loved one could have known, your faith in their abilities cannot be questioned.

and the bottom line here is that you are hurting and see no end to it from what i am reading in your post. sometimes we must look outside the box to help us find inner peace.  when you are in that place, where grief and loss is wearing you down, and there seems to be no end in sight, i say you must exam your options.

i wish you the best in finding that inner piece, as we need to remain mentally healthy if we are to win the battle against this virus.

i have 22 healthy years to back that up.

kellyspoppi

    

Offline BT65

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Re: Survivor's Guilt
« Reply #42 on: April 27, 2007, 10:41:28 PM »
I truly believe that my friends that have passed from AIDS are all cheering me on.  I also believe that when it's someone's time to go, you could build a concrete wall around them and they would get struck by lightening.  I used to have survivor's guilt in the early days and wondered why I wasn't getting horribly sick when everyone else was and then when I did get horribly sick, why it never took me out.  I think everyone who is still alive has a purpose to fulfill.  In my belief system, we are all here to help each other and make each other's lives a little brighter! ;)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline kellyspoppi

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Re: Survivor's Guilt
« Reply #43 on: April 28, 2007, 09:51:43 AM »
 ;D    well said betty. my feelings as well.

kellyspoppi

Offline ARMANDO

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Re: Survivor's Guilt
« Reply #44 on: April 29, 2007, 12:14:48 PM »
I KNOW EXACTLY HOW WHAT YOU ARE TALKING ABOUT.I AM THE LAST SURVIVOR OF MY GROUP OF ABOUT 15 CLOSE FRIENDS.I OFTEN ASK MYSELF  WHY I AM THE ONLY ONE LEFT,WHAT MAKES ME SO SPECIAL?I GET SAD BUT THEN I SLAP MYSELF IN THE FACE AND I GET OVER IT.I  HAVE HAD TO CHANGE THE WAY I LIVE MY LIFE,I DONT DO THE BAR THING ANYMORE, I DONT DRINK OR DO DRUGS,I GET PLENTY OF REST AND I DO WORK OUT EVERYDAY.IT HAS BEEN A VERY LONG ROAD AND I HAVE BEEEN CLOSE TO DEATH ONE OR TWO TIMES BUT EACH TIME I HAVE PULLED THROUGH AND I HAVE COME BACK EVEN STRONGER.IT IS VERY DIFFICULT FOR ME TO MAKE NEW FRIENDS,IT'S A TOTALLY NEW GENERATION OUT THERE AND DONT CARE FOR IT.MOST OF THE GUYS ARE STILL HAVING UNSAFE SEX,DOING ALL KINDS OF DRUGS AND MOST OF THEM HAVE A DRINKING PROBLEM.SOMETIMES I FEEL SO ALONE AND I FEEL LIKE I HAVE NO ONE TO RELATE TO.THE SUPPORT GROUPS ARE NOT FOR ME.SOMETIMES I ASK GOD TO LET ME DIE BECAUSE I DONT WANT TO FEEL THIS WAY ANYMORE.

Offline AlanBama

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Re: Survivor's Guilt
« Reply #45 on: April 29, 2007, 01:14:01 PM »
Armando,

You are here for a reason, the same as I am.   It's true, we may not completely understand that reason, or even truly know exactly what our purpose is.   That is what I strive for, to be the best ME I can be each day, and if I can help anyone else along the journey, then it was all worth it.

many hugs,

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 pozchef

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Re: Survivor's Guilt
« Reply #46 on: May 02, 2007, 03:02:53 PM »
Here is an idea.  Try volunteering with a group of individuals with a chronic illness.  Turn your guilt into hope for people.  Who knows--your story of long term survival may give them the strength and the will power to keep fighting.  I have been fighting for 17+ years, and yes I have had the same guilt as you, but I have devoted time every week to working with sick kids and letting them know that the road goes on, not stop, is powerful for both parties. 

I am reminded of a line in a chorus by the accapella group The Flirtations.  "The only measure of your words and your deeds, will be the love you leave behind when you're gone."  Spread love through your work and watch your guilt disappear.

PozChef
Peace, Love, and happiness or
Piece, luv, and horniness,

PozChef

Offline kellyspoppi

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Re: Survivor's Guilt
« Reply #47 on: May 02, 2007, 09:38:40 PM »
 ;D  well said POZCHEF,

on the day my fiance died of aids in 1989, i learned my dad was diagnosed with lou gehrigs disease. for the next year and 1/2  i watch my 6'4" 200 lb father wither away like somone you saw in pictures of concentration camp survivors. he was bedridden and on a vent with complete mental capacity and no hope for recovery. he died as miserable death as many who died of aids.

the difference today is that we have life saving meds available to most of us, and agencies out there to serve us. 17 years later,  and those with lou gehrigs disease have no meds and very few agencies who serve them. most folks require around the clock care but health insurance plans don't pay for that. does any of this sound familiar to many of you who have been in this fight for 20+ years.

my dad and i worked for the same company and were business partners. our company approached me while he was still bedridden wanting to do something to honor him for his 45 years of service to the company. they asked me if i would run a golf tournament named after him to raise money for ALS in his name.

that was the begining of what has become both a labor of love, and a sober reminder of just how lucky we are to have a disease where, because of the work of early aids activists (ie. ACT UP & GMHC), we now have the ability to live somewhat normal lives. i am not saying it is easy to live with aids, but compared to those living with lou gehrigs, most of us are truly blessed.

in the past 16 years i have helped to raise $600,000 for the only community based organization between new york city and boston. any clue how many aso's there are in that same area? hundreds for sure. any idea how much money reaches those aso's in one year? a hell of alot more than i have raised in 16!

so whats my point here?

in helping others less fortunate than me, i have given back for the blessing i have been granted, just as pozchef has mentioned he has. there is no better feeling in this world than when i present that agency a check like the $118,000 i gave them last year. 

but the misfortunes of those with lou gehrigs reminds me why i need to pound the halls of my state and federal legislatures to make sure that our good fortune continues. we have yet to acheive access to medical care for all with hiv/aids, and until we do, we cannot rest. we need to get involved in the process.

there are several very important pieces of legislation before congress right now which can make the difference whether we gain complete access for all to medical care and treatment regimens. i strongly suggest that if you are having problems accessing medical care or meds, get on your computers and go to the NAPWA (national assoc of people with aids) website and learn what these bills are and call your congressional leaders to encourage them to vote for these bills. NAPWA can help you with phone scripts on what to say.

after a few similar posts 2 weeks ago, before i went to aidswatch, i was asked by fellow members "how can i get involved?" in the next few days i plan to post a thread on the AIDS activism forum with just that question. i plan to attempt to collect data from as many folks here in the usa as possible compiling a list of grass roots aids activists in as many states as there are organizations, and where there aren't, at least learning what ASO's are in the other states where folks can get connected. 

aidswatch was not as widely attended (200 to 300 people) as in prior years. this was a tremendous disappointment to me, as i have been attending this event, as well as C2EA (campaign to end aids)l, for the past 8 years, when thousands of aids activists attended these events. we are currently dealing with a congress that is mindful of our needs but they must see our faces and hear our stories, for at the end of the day, when it comes time to vote, it is your face & your stories that they will long remember.  :o

it is time to soldier up folks. complacency breeds silence, and silence lacks urgency! i hope to see you all participating in the coming days and weeks over on the aids activism forum. i could sure use your help.

kellyspoppi

Offline flight62

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Re: Survivor's Guilt
« Reply #48 on: May 06, 2007, 04:37:39 PM »
I love this thread. Thank you for starting it. This is my experience. I have now been poz for 19 years. I remember stepping in the Miami Beach clinic in 1988 with a cold "well you better see a doctor." Back then you were lucky to live 3 months or at most three years. There was NO support back then. I remember that all the childhood hurts and dissapointments put me in "prepare to die" mode. Every next was assumed to be the last. Alot of next and last have come and gone. Many people I know have died of various diseases not associated with HIV...both straight AND gay...neg AND poz.

For years I suffered not from guilt as much as confusion and despair. Before I knew it, I was looking at 14 yrs poz and somewhere along the way I am FINALLY at 19 years somehow pulling it together. I am trying to not sit on the pity pot, but I do NOT want to suppress my feelings as I sure as hell dont want to die of a heart attack due to keeping it all in. We "old" guys in our 40's have a tendancy to be more private and reserved.  :-[

The truth of the matter? While I am thankful to be alive, I mourn my youth and the missed opportunities that are better served when in your 20/30's because I subconsciously chose to die (emotionally and mentally) from HIV instead of LIVE with HIV. HIV has taken its mental and emotional toll. Ironically, less so physically as I am apart of the 2% who hasn't needed meds after all these years. Now THAT'S a strange trip. For many of us, the prime of our life was spent in a daze. I am finally coming out of that daze. In many respects I feel like the character Rose on Titanic when she looks in the found mirror and says the reflection has changed. Not to feel sorry for myself, but we in the gay community deal with enough BS with fem vs butch, top vs bottom, looks, dick size, and HIV status. Now we must deal with the reality that we just may outlive our parents. Wow! Maybe I'm the only one, but part of me felt alot better 10 years ago knowing I would die young and  my cute youthful face would always be associated with me. I am not prepared to grow old.  :D  The natural issues (and don't pretend that arent there) associated with growing older are hard enough for your run in the mill 40/50/60 range, but add HIV to it? It's just all too freakin weird and I find many times I live in mindset that is perplexed.

The good news? You CAN live with HIV and you CAN persue and LOVE your PASSIONS...something I had just about given up on. Somehow THAT has made being a long timer with age issues ( I own it!!) just a bit easier. ;)

Offline AlanBama

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Re: Survivor's Guilt
« Reply #49 on: May 10, 2007, 11:05:01 PM »
While I am thankful to be alive, I mourn my youth and the missed opportunities that are better served when in your 20/30's because I subconsciously chose to die (emotionally and mentally) from HIV instead of LIVE with HIV.

My feelings exactly, flight62.   I grieve the loss of my youth, and life before HIV robbed me of so many things. 
"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 CaptCarl

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Re: Survivor's Guilt
« Reply #50 on: May 22, 2007, 07:12:25 PM »
Alan,
   Once again you have started a thread that makes me thing hard about my (our) situation. I thank you for it truly. I used to have what we call survivors guilt, but it was in a different perspective. For the most part, I do not feel guilty about living for damn close to two decades while others have not. The type of survivors guilt that I do feel from time to time is different. I feel guilty about outliving just one person, and that is the person that I infected many years ago.
   I had been in a 5 year relationship with someone, Bob was his name. We broke up for a short period of time, and while we were apart, I got infected. Shortly after we got back together I became very ill with what seemed to be the flu. He took me to the hospital, and they could find nothing wrong with me. After talking with the doctor extensively, I was tested for a few STD's. Five days later, the results came back that I had contracted Gonorrhea. It was Bobs birthday, and we had just finished having sex when the call came, and I jokingly said to him, "Guess what you got for your birthday?" We both had a good laugh over it. Two days later we went in for our shots, and that was when the doc said, "If you caught gonorrhea, you could have just as easily contracted HIV, we will need to test you in a few months." I got a very cold feeling in the pit of my stomach. A few months later, I tested positive, and when Bob got tested, he was negative. He re-tested just to be sure, and it came back positive as well.
  We did the best we could, but it was the eighties, and the doc told me that I had between 18 to 24 months, same for Bob. Our relationship foundered, as I had trouble dealing with what I had done, and Bob had serious anger issues with me. Things got ugly, and he never let me forget that I had signed his death warrant. The fact that I had done thins was hammered home with a brutal regularity. We lasted about two years longer before going our separate ways. I had hoped that we could at least remain friends, however Bob was not in the same frame of mind, and so we never spoke again. I tried writing him a few times after I moved out west, but he wanted nothing to do with me.
   In the fall of '95, his sister called me to tell me of his passing. I went back east for his memorial service, and again a year later, when his mother and sister scattered his ashes out at Cape Cod. There are times when it seems unreal to me, like  snippets of a nightmare that cannot be shaken, and never will. Sometimes that chapter of my life seems more like a movie with someone who looks like me playing my part. It's been so long that it doesn't seem as though it were really real. But it was.
   For the most part I do okay with it. I realize fully that I did not know, or even suspect that I was infected. Still though, sometimes in the dead of night when you are lying awake in bed, it can come back to haunt you. Big time. Sometimes I feel so bad about it, and about myself, that Maybe if I had just been thinking a bit smarter none of this would have come to pass. I try not to be that way, but it cannot always be helped. The "what ifs" can kill your soul if you let them.
   That is the survivors guilt that I feel. If I could switch places with Bob, I would do it in a heartbeat.

Yours in Survivorship, Capt.Carl....
The only thing I can do straight is shoot..

Offline kellyspoppi

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Re: Survivor's Guilt
« Reply #51 on: May 22, 2007, 10:52:51 PM »
capt carl,

i wish i could just reach out and give you a hug man. giving up that story took a lot of courage, as i'm sure each time you think about it, it touches you deeply.

i received my dose of hiv from my girlfriend, who later became my fiance. she got hers from a blood transfusion and didn't learn it was tainted until a year after we had been together. but did it really matter the method she got it? not to her.

on the day she learned she had infected me we were in my office and i was getting the news over the phone. (yes, back in the 80's there was no such thing as pre/post test counciling. ??? :o >:( :'() )

imagine what it must have felt like for her,  knowing my parents and my younger sister worked with me and were standing there now learning that their loved one was infected with this deadly virus and she was the one that gave it to him. i'm sure you know what i mean.

she ran out the back door of the office screaming and sobbing at the same time. she must have been horrified wondering what they felt about her. this could have been such an ugly scene, and i'm sure for most who lived something like it, it was!

but the fact is, as i hung up the phone stunned with the news, a scene was taking place in the back lot of my office i will never forget. as joanne was sloaching there sobbing her eyes out pleading for their forgiveness, my parents were holding onto her telling her it was alright, that they didn't blame her, that they knew she didn't do it on purpose.

and i guess that is the message i would like to leave you with. back then, many of us were innocent victims, and there were many who passed this virus on without even knowing it. you were one of those folks who found yourself to be responcible, but was it intentional? hell no. it was just one of those things that happens in life that can be difficult to accept. like a driver who has a young kid step out in front of him and he is unable to stop. although he knows deep down inside there was nothing he could do to prevent it, the fact is it was he that took that life. where is the justice in that?

so there the both of you were living now with this killer bug. so many paths you both could have choosen to take. she and i were there as well. first we had to find a way to deal with her feelings of guilt. we went to our parish priest, someone we truly trusted with this type of information. he gave her books to read on guilt and one on one counciling.

all i knew was that i loved this woman, and i had no intentions of blaming her. we had a terrific relationship, especially compared to the horrendous marriages we both had come out of. we had hiv, but we had each other. when i told my dad i was frightened about dying so young from aids, he said "son, be thankful you had these wonderful years with joanne after such a sad life with your first wife. my dad always looked for the good in every bad situation.

we remained very much in love right up to the day she died, and i never once felt anger toward what she gave me. i know it is hard to hear me say this but my life has taken on such a more powerful existence since she died and i have devoted my time to aids advocasy and to speaking to others about my life experience with aids. i have found my purpose through this experience.

so your friend was infected by you. did you do it out of malice? i read in your post that you didn't, that you were unaware. he could have forgiven you for that, and the two of you could have worked through it together. and if he had still passed away, you would have at least had the memories of the life and love you shared together. would you have felt this way had it played out like that?

it is time to live and let go.  try to take this time you have left on this earth and make it better for those who live in despair with this disease. let them know it is not healthy to feel that way and you are willing to help them through it. that anger and hate can only lead to sickness and death, and that you have the scars to prove it.  saving one soul will end your guilt and help you to realize things could have been different, if only he had stood at that fork in the road & chose the right path.

i acknowledge your pain and am here to tell you it is time to move on. be the captain of your own ship carl. may you enjoy smooth sailing from this day forward. 8) ;D

kellyspoppi

   

Offline CaptCarl

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Re: Survivor's Guilt
« Reply #52 on: May 23, 2007, 05:16:59 PM »
Kellyspoppi,
   Thanks for the words of encouragement. It's good to hear them, especially from someone on the other side of the infection cycle. I am glad to hear that you and your late wife were able to move forward with your plans and your lives. This thing frequently stops people in their tracks, and it can take them months or even years to get back on an begin travelling again. Some people, like my ex, never do though. When he died, he was an angry and bitter man. But that was his choice to be that way, never once trying to come to grips with it. His family was very good to me in spite of everything that happened, and when they invited me back for his memorial service, they were exceedingly kind to me. Even to the point of telling a few others in attendance that if they had issues with my being there, as some did, that they were welcome to leave the services at any time.
   For the most part, I don't let it bother me, but like I said, in the middle of a sleepless night, all sorts of demons can come out of the woodwork and wreak havoc in your mind. It's not always easy to exorcise them, sometimes like in a bad storm, you just have to ride it out, and hope that it doesn't get too bad. My life continues to move forward, sometimes a little more slowly than I would like, sometimes not slow enough. But at least it IS going forward, and ultimately that's all that matters. Now if I could just get the damned mortgage company moving a bit more quickly...... :)
   Again, thank you for your kind words.

   Capt.Carl
The only thing I can do straight is shoot..

Offline kellyspoppi

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Re: Survivor's Guilt
« Reply #53 on: May 23, 2007, 09:20:15 PM »
sail on sailor. smooth seas ahead.

so good to hear his family stuck up for you like that. it had to make your heart feel at ease at such a difficult time.

hope to continue to hear from you capt.

kellyspoppi

Offline Hard Times

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Re: Survivor's Guilt
« Reply #54 on: May 24, 2007, 12:08:55 PM »
i 'm feeling guilty just reading these threads !!! hiv+ for 9yrs,  i've been depressed for over 7 yrs.  hiv+ really does a number on your brain !!  the positive mind is a scary thing !!!  i don't even remember who i was before i was diagnosed !!!  i am having identiey problems !!!  i dred support groups ,because it got to the point every time i went, someone else DIED !!!!  i greve & say when is it going to be me !!!  side effects do not help the situation eather !!!  guilt is holding back my feelings for my partner !!!   you cant understand ,if you havent been there!
Your Body Is What You Are.
Your Soul Is Who You Are.

Offline hudstar

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Re: Survivor's Guilt
« Reply #55 on: May 25, 2007, 12:15:47 PM »
For some reason I don't have any guilt issues with this topic. 

Sometimes, and I know this is perverse, I have a tinge of guilt for not having any guilt. 

Im with you, I have no guilt but feel somewhat guilty for not feeling guilty. I know when I survived lymphoma I was one of two that year that did not die from it. I kind of blocked out those other guys on my ward.... not because of guilt, just because it was and still is too painful to remember I guess.
diagnosed 1988
POZ personals - hudster

Offline AlanBama

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Re: Survivor's Guilt
« Reply #56 on: July 05, 2007, 09:38:56 AM »
Just thought I'd post this as an update:

The guy in the incident that prompted me to write this post died last night.   His suffering is over, and my thoughts and prayers are with his wife and sons today.

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 dixieman

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Re: Survivor's Guilt
« Reply #57 on: July 05, 2007, 10:34:33 AM »
Well... to say the least... I can agree with everyone but, I do not have survivors guilt. People come into ones life for reasons beyond explanation... some stay, some leave, and all in all we are our own entity... people live... we bond have friendships... hopefully find love.. care for one another... and appreaciate each one as individuals... and unfortunately people die... its our own mortality... I've lost count at 50... fifty friends passing from various circumstances... from aids, hep, cancer, car wrecks, suicide, murder, missing ... never found, or simply old age...  etc... We never know when its our time... so I treasure and value all people who are in my life even when they get on my last Nerve... but, survivors Guilt.. no thats just not acceptable for me! I believe everyone associated with my life from the past, present and future are CHEARING me on... till its my time.. to join all those who have prepared the way for me...

Offline hudstar

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Re: Survivor's Guilt
« Reply #58 on: July 05, 2007, 10:32:16 PM »
Reading these posts it seems some of us have a vivid awareness that we outlived something we thought we would not. I cannot remember any of my doctors telling me "we changed our views, things have changed and you are not going to die" - I figured that one out for myself during the late nineties when attitudes were more relaxed and the "death sentence" talk stopped. I figured the likelyhood of my own survival rate myself. Twenty years on I find it ironic that I have outlived others in my life that have passed away due to reasons other than HIV. I guess the thorn in my side was those that did die from HIV had no sympathy other than from our own circle of family & friends whereas a death of a friend by drowning or car accident  generated sympathy from most. If I have guilt I guess it is for not speaking out loud enough to tell people of the pain I felt when people I knew had died from an AIDS related illness. Then again I cannot feel guilt for being silenced by stigma at a time when stigma ruled every media article relating to HIV.  Today I just put this attitude into a box along with the strange attitudes of people (like when couples freeze you out of their life  when you suddenly become single :) Human nature is a mind field of quirky emotions and I think issues related to HIV topped the charts on that one. Even today with all the benefits of drug therapy and good cell counts I  live my life every day like it is my last.  This is because it was all I knew and it became a part of me.  I do not think of death at all nowadays yet I am fully aware my past struggle formed my attitude and lifestyle I have today. Rather than feeling guilt for surviving I see i am far better equipted for doing things that most would shudder or view as "risky" or "outside the box". I thank myself even more for cultivating a mindset of freedom for myself. As for mourning, - this is my own personal mindset and feelings of grief or sadness occurs in the privacy of my own space. I guess the end result of being HIV is that I do not trust society - even today - to have the compassion to deal with HIV. I can live with that comfortably and without bitterness or questioning - my world is not going to fall apart.
diagnosed 1988
POZ personals - hudster

Offline JeffreyM

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Re: Survivor's Guilt
« Reply #59 on: August 09, 2007, 02:03:40 PM »
I had a lot of guilt over it.  I had to release it.  Along with anger , resentment and regret.  These emotions were making me depressed and sick and actually lowered my CD4 count.  I replaced these bad emotions with good ones, like love, sharing, peace, beauty and light.

It took me a long time to learn, but I had to do it for my health.


Offline AlanBama

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Re: Survivor's Guilt
« Reply #60 on: February 11, 2008, 08:58:29 PM »
I'm resurrecting this old thread, because the issue of Survivor's Guilt has reared its ugly head again....

I lost my dear friend Kevin last month; his Mom and sister gave me some of his unused meds.   They would like for me to come over and "go through" some of his things.

I am honored and touched that they want to include me.   But at the same time, I feel that guilt creeping in......and even though his Mom would NEVER say it (and may never even think it) I have to wonder if she isn't pondering the thought "hmm, why did my son have to die but this man is still doing well?  he has had AIDS longer than Kevin did...."

The deaths I went through back in the 80's and 90's were tough; but you know what?  It never gets any easier.   In 2008 it hurts just as much or more, because you have that much more 'history' under your belt with someone.

Again, please pardon the "resurrection" of this topic, but I just needed a place to post this, and didn't want to bring up the "losing a dear friend" topic in 'living with' again.

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 joemutt

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Re: Survivor's Guilt
« Reply #61 on: February 12, 2008, 03:24:33 AM »
I'm sorry about your loss Alan. You're right about resurecting this thread.
It doesnt get any easier as we age.
I wonder if everyone has this feeling; it takes me much longer to get over somebody's death than
it used to when I was younger.

Offline heartforyou

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Re: Survivor's Guilt
« Reply #62 on: February 12, 2008, 03:50:56 AM »
Alan,

Let me start by holding you... and say that the world is a better place because of you.

Everytime a loved one passes away it brings back the sad feeling of prior losses. Even if we have lived through those losses and sort of put them on the schelves of our heart, they still are present.

Your survivor's guilt just shows that you are made of the right kind of wood Alan.
Remember that we al will go eventually.
And maybe trying to understand why one goes early will never be understood, so you may very well try not to .

I think you have had too much grief in your life and Kevins's passing just tore open the scar(s)....

We have talked face to face about the losses before... and we have seen the pain in our eyes and hearts. So, I understand your feelings.
I am happy you are still alive and have touched my life...

And to Joemutt :"it is the sum of all the losses that makes it harder" : 1+1+1+1+1+1+1++++++++++++++++++ = many

Love

Herman
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline bear60

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Re: Survivor's Guilt
« Reply #63 on: February 12, 2008, 06:45:28 AM »
Alan
You dont need an excuse to bring up how you feel about your friend Kevin.
It makes you feel better to talk about it.
Poz Bear Type in Philadelphia

Offline sharkdiver

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Re: Survivor's Guilt
« Reply #64 on: February 12, 2008, 07:36:50 AM »
Dear Alan

Don't feel bad about bringing this up again. In fact anytime is fine. Believe me it will be three years at the end of his month that I lost my partner and I still get down. Sometimes I think people don't want to hear about it anymore and that I'm unloading on them way too much.  I realize now it really shows how much I love him and how much of an impact he had on my life.
I believe that might be part of what you are feeling.

anytime you need to talk about it....
go for it.

love,
Sharkie
« Last Edit: February 12, 2008, 07:41:02 AM by sharkdiver »

Offline BT65

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Re: Survivor's Guilt
« Reply #65 on: February 12, 2008, 07:57:51 AM »
Sweet Alan, don't feel bad in the least about "resurrecting this thread."  That's what we're here for.

I know that when someone passes from AIDS, it makes the disease just that much more real to me.  Some days I don't even think about it (the virus).  And yes, tear away the scabs it does. 

I think when you wonder whether or not Kevin's mum is thinking the things you mentioned, it's just those "guilt" feelings.  She's probably very thankful he had such a good friend.  Take care, sweetie.
Peace~
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AlanBama

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Re: Survivor's Guilt
« Reply #66 on: February 12, 2008, 10:35:49 AM »
Thanks for your words of comfort, my friends.   It means a lot to me.

If I've learned anything, it is that we need to TELL the people we love how much we love them each and every day, because you never know when it will be the last time.   I wish I had known that Tuesday Jan 22nd would be the last conversation I ever had with Kevin....I would have told him how much I loved him and how much his friendship has meant to me.

So I'm telling you all NOW, while we're all still around, that I love you, and I appreciate the care and concern you always show for me.

hugs,
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 BT65

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Re: Survivor's Guilt
« Reply #67 on: February 12, 2008, 11:59:51 AM »
Luv you too, Alan. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Iamrick

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Re: Survivor's Guilt
« Reply #68 on: February 12, 2008, 12:12:03 PM »

  This is something that was forwarded to me earlier today, several times!!
It touched my heart...Thought it belonged here.
Love and Light to ALL!!

"Love Ya!  One day a woman's husband died, and on that clear, cold morning, in the warmth of Their bedroom, the wife was struck with the pain of learning that sometimes there Isn't anymore. No more hugs, no more special moments to celebrate together, no more phone calls just to chat, no more 'just one minute.' Sometimes, what we care about the most gets all used up and goes away, never to return before we can say good-bye, say  'I love you.' So while we have it, it's best we love it, care for it, fix it when it's broken and heal it when it's sick. This is true for marriage .. And old cars ... And children with bad report cards, and dogs with bad hips, and aging parents and grandparents. We keep them because they are worth it, because we are worth it. Some things we keep -- like a best friend who moved away or a classmate we grew up with. There are just some things that make us happy, no matter what. Life is important, like people we know who are special. And so, We keep them close! I received this from someone who thought I was a 'keeper'! Then I sent it to the People I think of in the same way. Now it's your turn to send this to all those people Who are 'keepers' in your life, including the person who sent it if you feel that way. Suppose one morning you never wake up, do all your friends know you love them?  I was thinking...I could die today, tomorrow or next week, and I wondered if I had Any wounds needing to be healed, friendships that needed rekindling or three words needing to be said.  Let every one of your friends know you love them. Even if you think they don't love You back, you> would be amazed at what those three little words and a smile can an do. And just in case GOD calls me home ......  I LOVE YA!!!  :-)  Live today to the fullest because tomorrow is not promised."
Happiness  keeps You Sweet,

Trials keep You  Strong,

Sorrows keep You  Human,

Failures keep You  Humble,

Success keeps You Glowing, 

But Only God/Goddess keeps You Going!


Have a Blessed Day Everyone!! Rick

Offline aztecan

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Re: Survivor's Guilt
« Reply #69 on: February 12, 2008, 10:51:04 PM »
Hey Alan,

Forgive the tardiness of this response. I know I read this thread and thought I had responded to it. I guess the cough syrup I've been living on is stronger than I thought.\

You were right to resurrect this thread. I think no matter how old we get or how many people we have lost, it never gets easier.

I am sorry for the loss of you friend. I am sure of one thing, he was very lucky to have you in his life.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline oscarbi69

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Re: Survivor's Guilt
« Reply #70 on: February 29, 2008, 07:39:35 AM »
No, your not the only one Alan. For all the years I was living healthy with this virus, and watching so many others pass on, from aids, or other causes, I was having these feelings of guilt quite a lot. I still do at times. I often wondered "why", or "what" makes me continue to go on. Or " what can I say". I was feeling almost freakish at times.

I am sorry about your fellow church goer. Words can be difficult to come up with at times.... I know this too well. Sometimes just a smile and a touch on a shoulder is what someone needs. I know....

                        Well first of all ,we all have a destiny and a role to play out in our lives,so take the strengths of the ones who have passed and applie there love to your existance and honour there memories that way.I have lost many friends and feel I live for them as well as me .This gives me much peace ,try it it will truley uplift your self and your way of thinking positive,Peace   Brad
Ray
Seeking info on lipodystrophy and any advice.

 


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