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Author Topic: HIV survival, dirge for the departed  (Read 4883 times)

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Offline jkinatl2

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HIV survival, dirge for the departed
« on: September 12, 2008, 11:13:34 AM »
Requires you to have a steel core. Either you have it, or you don't.

We often shock ourselves at how much we can take, how much we can get up and walk away from.

Because we do. Because we feel we have to. Even when we wish we didn't.

We need those with that steel core around us, to remind us that it's a nasty business, surviving.

We don't always end up pretty or genteel or sweet or remotely nice. We are not, at the end of the day, full of so much hugs and rainbows. But the kindness we share, the compassion we feel, comes from a far more real place. The good deeds we do are magnified tenfold because we get it, we understand, we know.

We end up wise, despite ourselves. We end up better representations of the human race.

And sometimes that representation is acerbic and sarcastic and does not tolerate fools gladly, if at all.

Sometimes survivors make others uncomfortable. They cringe, because our metalworks show when we move, because we punch through, rather than squat and cry. Because we use our pain and our profound loss as fuel, fuel which puts out a foul smelling and off-putting emission.

There is a favorite quote of mine. Please indulge me:

"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand." 

-The Velveteen Rabbit
by Margery Williams

This place, this safe place for those fighting the good fight, suffers today. As it does any time that harsh cruel light is dimmed. We punch through, I suppose, we stagger on, I guess.

But as Long Term Survivors, it is our duty to eat the dead, the banished, the outcast, and the unwanted, To eat them, and to become them in some small way. To take them inside us and move on, burdened slightly more with the responsibility inherent in remembering, and continuing the mission.

We do not want to fight. We do not want to suffer. We do not want to struggle. But despite ourselves, we who survive have cores of steel. We do those things.

We do what we must, BECAUSE we must. And sensibilities of the frail be damned. We Will. Take. One. More Step.

I urge my fellows to do that, especially today, but every day. Not asking for much, Just one more step. One more punch. One more round.

At the end of our rope, we sometimes discover our spinnerets.

"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

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Offline Bucko

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Re: HIV survival, dirge for the departed
« Reply #1 on: September 12, 2008, 01:15:51 PM »

That quote brought back ancient, long-suppressed memories of my grandmother, who read it to me often. And now I'm sitting here at my computer with wet cheeks, grateful for the solitude even as I yearn for the communion I've been too skittish to indulge in lately.

I should have better understood the subtext of a phone call I got yesterday afternoon. Honestly, sometimes I'm just thick in the head.

As a pal of mine said recently regarding something entirely different, "We're at the Bread-and-Circus stage now, totally lost in the dark of fear and falsehoods."

(Who is howling at the moon this afternoon)
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Offline Jeff G

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Re: HIV survival, dirge for the departed
« Reply #2 on: September 12, 2008, 01:21:57 PM »

(Who is howling at the moon this afternoon)

gorgeous tits and all  ;D
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Offline Dachshund

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Re: HIV survival, dirge for the departed
« Reply #3 on: September 12, 2008, 01:31:40 PM »
It's a bitch getting old with HIV. There's not a poetic or noble way to describe it.

Offline Ann

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Re: HIV survival, dirge for the departed
« Reply #4 on: September 12, 2008, 04:19:16 PM »
Love you.

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Offline anniebc

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Re: HIV survival, dirge for the departed
« Reply #5 on: September 12, 2008, 04:31:48 PM »
Dearest Jonathon

I don't belong in these forums, maybe in years, but not HIV years, but as a Mod I'm exercising my powers to post here.

Thank you for being here with us and keeping it real....I'm lucky enough to have been REAL for a very long time.

Jan :-*
Never knock on deaths door..ring the bell and run..he really hates that.

Offline AlanBama

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Re: HIV survival, dirge for the departed
« Reply #6 on: September 17, 2008, 11:58:05 AM »

As always, your words move me immensely.  I keep surviving.   Not sure why or how some days, but I just do.  Some days I try to put a swipe of cover stick on my molluscum scars....somedays, I don't bother.   And some days none of us feel like trying to put cover stick on our emotions.   When your soul is chipped away, slowly, bit by bit, the part that remains seems to get tougher.

I know some people think us LTSers are a sad bunch, and a 'drag', with our wet blankets and our 'rainbow erasers'.  20+ years of AIDS tends to do that to a person.

With love to you, and in honor of all those 'keeping it real'.....


PS - Jan, as far as you not belonging, honey you belong where we say you belong.   I'm proud you think enough of us to read what we write.
"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: HIV survival, dirge for the departed
« Reply #7 on: September 18, 2008, 08:17:02 AM »
Having lived and gone through what I have, I have found out a couple things about myself; someone can tell me the most awful story about their life, and I can listen without coming unglued.  Then, I can watch the t.v. and see an ad on about, oh, an abused animal, and fall apart. 

I've grown a kind of tough compassion I believe.  One where I really feel for someone who's having a hard time, but I won't fix it for the person anymore.  I will, however, help them remedy it, any way I can.  I don't know if that makes any sense.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline mudman8

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Re: HIV survival, dirge for the departed
« Reply #8 on: October 01, 2008, 11:22:40 AM »
Going thru what we do wizens us and gives us compassion. Tho we are allowed to whine every once in a while.

We now understand more, listen and help more. Little things are profound.  I never understood this in my 20s, before HIV. I'm a solid 54 with 20+ years of HIV and ready to turn the page yet again.  Many of our friends have not made it this far. But instead of holding back we need to reach out and help someone else.

my 2 cents worth.

Life is analog

Offline heartforyou

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Re: HIV survival, dirge for the departed
« Reply #9 on: October 03, 2008, 08:42:08 AM »
Oh Jonathan...I'm sitting here, tears running down my face....

And yes Alan.....what is left of our souls gets tougher...

Wished I could hold you now and hug. I feel very very depressed.

Diagnosed in 1987 and still kicking
Kivexa (Epzicom),Tivicay once daily.

Switching to Viramune, Isentress and Emtriva

Happiness is the freedom of breathing fresh air every day.

Offline Joe K

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Re: HIV survival, dirge for the departed
« Reply #10 on: October 03, 2008, 07:23:25 PM »
What a painful tribute, yet very true.  I have eaten far too many dead and I have been active in the HIV community for so long now, that it all seems rote.  Sadly, the pain never dies, nor does it ever get easier.  Yet I keep moving forward and hopefully, I will have many more years to take those steps.  For far too many reasons, I can do no less.

And Jan, you belong here as well, because longevity is subjective, but compassion and wisdom are forever.  You earned the right to share this table.
« Last Edit: October 03, 2008, 07:25:37 PM by killfoile »


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