The Aids Machine

24 hours later and I hope that I'm now calm enough (and warm enough) to comment lucidly on yesterday's National Congress HIV*STD*Sex.

I've always managed to escape going to the annual World Aids Day Congress organised by the Aids Fund as I've either been performing or been in hospital (the latter being a drastic measure by all accounts).

How I longed to have had that excuse yesterday.

It became very clear, very early on that I, as a Gay man with HIV, had very little reason to be there at all. It was hardly a National congress in as much as the main concern of the head of the Aids Fund (and thereby all organisations present who are, by definition, dependent on the Aids Fund for survival) was reclaiming subsidy/funds for international projects.

The setting up of international projects, starting with 'Stop Aids Now' in the 90's has always been used as a way to pull in more and more funding.

More money, more people, more status - higher salaries, higher ambitions, higher risks.

Assuming that all was well in the homeland, the Aids Fund turned towards the rest of the world as it feared that the money well was drying.

I have to explain for readers from other countries that the Aids Fund is an unique institution in the world. Without going into too much detail it is also an uniquely Dutch way of doing things. A Government unaware and unsure of itself and its capabilities of confronting the Aids epidemic named the Aids Fund as the only conduit for Government funding.

Therefore, all institutions bearing the name Aids/HIV have one big daddy who they have to crawl to for money. One who's feeding hand they are unlikely to bite.

The congress was a stately dance. Ton Coenen, head of the Aids Fund, was a rather dishevelled Sun King surveying his royal court. The courtiers and sycophants bowed low and scraped the floor before him. Prostrate they lay, unashamedly battling for favour. Tired and weary workers, obviously there because they 'had to be', counting the minutes till the bell.

International institutions, Dance4Life, workers from Sudan, Burkina Faso .... tales to tell that I/We had already heard a few times too many in Vienna at the Global Aids Conference a few months ago.

This was no National Congress about the National situation.

No.

This was a National Congress about the National Aids Fund.

It Gets Better!

Yesterday heard of an attempted suicide by an acquaintance - today heard of a successful attempt by another acquaintance.

Both Gay Men.

No, It's not going to get better ....

The Unbearable Lightness Of Being

Isn't it those moments of blind panic that keep me alive?

The idea that this is all there is .... nothing more .... probably less .... but this is definitely IT.

IT being whatever it is.

We create endless quests for elusive Holy Grails just to give us something to do with our lives. Or at least some kind of meaning to our lives. But of course we know that they are illusions. Self-designed myths and fantasies to keep us going during what is essentially a very light state of being.

Suicide and the contributing factor

Unfortunately another gone .... when will the community realise that suicides among HIV Positive Gay Men happen a lot more frequently than they should?

Why don't institutions such as GGZ inGeest have suicidal patients? They say they don't.

Private Psycho-therapists and Psychiatrists on the other hand are perfectly aware of the rising figures of suicides in our group.

But what can they do? What can we do?

Are we doomed to repeat ourselves every time anew "I didn't know/realise it was that bad!"

When people ask "Was he HIV Positive?" and other HIV Positives say automatically "Yes, but that wasn't why he killed himself" .... it just isn't true .... it may not have been the decisive factor, but it was definitely a contributing factor.

Drenthe?

I'm off to Emmerhout, Emmen, in .... Drenthe .... the back of beyond ....

I will report upon return.

If I don't return you'll know I'm lost in the no-mans land that is 'the East' .....

Underestimation?

Have I underestimated the impact that the Conference would have on my body? And more dramatically my mind?

I've been in a heightened state of tension for the last 6 days.

I've been in seclusion for the last 3.

And I have no intention of breaking that silence for at least another day (or two).

What's wrong?

Everything and nothing of course.

Everything hurts, everything is painful from the slightest bump of the elbow to a lost dog on TV - but its all over nothing (or at least nothing significant).

That's also one of the problems - everything feels significant.

Over-reaction to any and all stimuli is what its about.

Dopa

Now that's what I call dramatic …

Drug users, not necessarily injected, have less dopamine receptors than 'normal'. This implies less activity in frontal cortex zones indicating less control, and more activity in the amygdala zone indicating more impulsivity.

However, the same is also true of people with HIV. To a lesser but still significant degree people with HIV have less dopamine receptors.

The combination of HIV infection and substance abuse whether it's Cocaine, Heroine or Meth etc increases this effect - possibly permanently, but at least for quite a few years.

This results in a continued loss of control and increase in impulsivity - an addiction to dopamine.

It's a long way to go till substantial evidence is accumulated but it's a begin. Addiction is a Brain Disease which is aggravated by HIV.

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Demonstration Damage

Not everyone was convinced that Canada is doing it's best in the fight against Aids…

Breaking Point

Just achieved breaking point at the conference. There's just so much I can take of all this incredible activity around me. So I'm trying to slow down and put an end to today while I'm still (reasonably) sane …

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Michel Kazatchine

"The denial of human rights for Gay men is counter productive, even absurd when considering the general health of people living with HIV. "

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Saturday

Pre-Conference day in Vienna - Gay men and other MSM.

600 Gay men (and associates) in one location for a whole day may sound like heaven but not if you're surposed to be concentrating …

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Comment of the day

"we're not dying of Aids anymore - but we ARE still dying"

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Global Aids Conference 2010

On my way to Vienna. City of tarnished glory, idle vanity, and Cafe Demel.
I've already started by drinking an Espresso Machiato with bonbon at Schiphol. The waitress obviously thought I needed it because she slipped me an extra bonbon on the sly… love it.

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Death

Another one gone - Non-Hodgkins - no more than 5 years HIV+.

That's enough for this evening.

For sure

In a world built of coloured plastic and painted cardboard, its hard to find certainties.

And yet we do search for them continually. Why?

Our lives are built of emotions, but just like the world around us they are painted pieces of paper, illusions, shadows of something that seems to be just out of our reach.

In a world where nothing is real, nothing is stable, nothing is reliable, we create certainty. Or at least the fantasy of certainty. We blind ourselves to sometimes really harsh and violent reality in order to keep going. Its not just the 'head in the sand' mentality - sometimes we manage to bury ourselves completely. And in doing so stifle ourselves of all true and real feelings.

again

Once again I've worked myself into a situation where I feel I have little or no control over.

I have a wedding in a few hours that I have promised to go to. Its an acquaintance of an acquaintance. She's terminaly ill and has decided to get married to her husband again before she dies.

The whole thing will be so emotionaly heavy that I'm already now in a state of high apprehension.

What makes it worse is that I've been invited separately from my friends, leaving me to arrive at a later time than them - on my own.

I didn't know this until yesterday and the wedding is today .... if I'd known I would have made an excuse but as it is I now have no way out ....

If I go then I will be doing the wrong thing for me - if I don't go then that/I will be frowned upon.

I hate this ....

Backwards and Forwards

Most of you know what that's like at certain moments in your life. That idea that in spite of the 3 steps forward you have taken there has to be 2 steps taken backward.

But why?

The issue of non-acheivement is for me the largest reason I know of. The knowledge, real or perceived, of never being able to live up to the standards that I impose upon myself. Standards absorbed from a lifetime of being told that whatever I acheived it was just not quite good enough.

The perfectionist's tale.

To be or not to be ....

Is it the coward's way to back down from a confrontation?
It is certainly the most damaging to oneself. For the fear of the confrontation, or, more honestly, the consequences is paralyzing.

The fear of making ANY decision paralyzes me.

Any decision made, however small, however mundane, however inconsequential burdens me with a weight of fear.

Its hard to understand I know. How on earth can choosing, for example, sugar over sweeteners be such a fearful experience? Turn left or turn right on leaving the apartment? Go out or not go out.

Somewhere in my brain there is a fearful residence. Its a painful remembrance, real or imagined, of past mistakes. Of ALL mistakes. And all these mistakes were my own, my own choosing, a result, and results of, my own free will.

Ergo - anything good that has happened in my life has been as a result of intervention by person or persons (or even gods) outside of my realm of influence.

Ergo - no decision I can make will be the right decision.

Ergo - I am incapable of making good decisions regarding myself and therefore need other people to make decisions for me.

Ergo .... I have no free will.

Malcolm Mclaren - Deep in Vogue

Check out this video on YouTube:

http://www.youtube.com/watch?v=a9KDmJQjS_0&feature=youtube_gdata

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Brain fluid

"continuing development of the HIV virus in brain fluid"

I really do think that you can't get away with saying that to a room
full of people with HIV and then walk away …

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MSM

Well the Schorer has done what no-one has ever done before - you have to give them credit where credit is due .....

For the first time ever in the Netherlands, the Schorer has managed to publish a brochure for HIV+ Gay men over Hepatitis C without using the word 'Gay' once in the title .... or 'homosexual' for that matter.

So its official.

Even if you thought you were Gay all these years its not true - you are just a Man having Sex with other Men - MSM.

You stood on the barricades for nothing .....

Tina

So an acquaintance says to me ......

"I don't understand why you didn't come over to play with us last weekend, it was 'gezellig.'"

"They really got me going those two (later three - a different three) and one of 'em fisted me with both arms up to the elbows."

"Of course we were on Tina (Crystal Meth) which was really horny, otherwise I can't take so much up my ass."

"850 euro for 10 gram. Expensive? Depends on your priorities doesn't it."

"The Hepatitis C? I've been on the treatment for 5 months and it doesn't help - I'm just gonna have to wait for the new medicine."

....

HHV8

Another acquaintance with Kaposi Sarcoma related Non Hodgkins Lymfoma - like it never went away.

Gay, HIV+, 45+ not on CART, no reason to be, until ...

When will we see that the danger is present, not past.

Drama Queen

Drama Queens are wonderful creatures, at least they should be. They make a wonderful show out of themselves and their surroundings. Unfortunately, and more often than not, the cost of the show is higher than the content would warrant if it were on broadway.

Most Drama Queens don't even know that they are the only star in their particular firmament. Correction. They demand to be the only star in their firmament.

Its a lonely existence.

All glitter and sequins, spotlights and smoke screens, self-deception and pointless intrigue.

Aids-related Cancers

The top three cancers in the general population, breast, intestine and lung, occur in the same frequency in people with a Hiv infection. However, the three so-called Aids related cancers occur much more often.

1. Kaposi Sarcoma of the skin and internal organs – Herpes 8

2. Glandular or non-Hodgkin – Epstein Barr Virus

3. Cervical (in women) – HPV

Other cancers are rising in frequency amongst people with a Hiv infection. Notably the Hodgkin Lymphoma.

The association with Hepatitis B and Hepatitis C infections increase the risk of liver cancer.

Certain non-KS skin cancers are also more prevalent in people with a Hiv infection.

Anal cancer, although comparatively rare, does occur 25 times more in Hiv positive men and 40 times more in Gay Hiv positive men. Recent trials are already indicating that these figures will increase when the trials are completed.

Happy, Happy, Happy

For the first time in 20 years I read the last will and testament of my ex-partner Herman last night.

I read it and berated myself for reading it at the same time. But it didn't hurt, it didn't even really get me as angry as I expected it to. At least not angry with Herman. His mother I will always despise because she is who she is. His father was pure dictator, there was nothing else one could do but hate him, or at least revile him.

But last night I suddenly discovered detachment. After 20 years of a life twisted and distorted by Herman's dying and death I think I may be able to confront it.

The Worrier

I have to put a disclaimer here first - what I am about to write is in no way intended to hurt anyone.

I'm not a natural worrier.

As a teenager I was definitely a bridge burner, the cry of 'next!' was always on my lips. With no real idea of where I was going, and even less of why I was going there, I careered about the globe in a state of naive bliss.

Relatively naive bliss. Stuff happened but I was young enough to shrug it off and carry on. What I wasn't prepared for was that it would all come flooding back to haunt me much later on in life.

I won't bore you (and myself) with repeating the story of my life because its just too tedious for words in my head and too fantastical for the rest of you.

My relationships have all been bad in one way or another. In one way in particular is that they have all left me with an acute feeling of worry.

I worry about almost everything. Most of the time its reasonably under control, or at least I can hide it from others. I'm actually quite good at hiding it from myself too. I have acquired techniques, tricks and mental sleight of hand that allow me to function reasonably well even though I am sometimes in a continual state of anxiety.

Ok kids, this sounds worse than it is. Many of us have developed 'coping' techniques over the years. Social etiquette is made of 'coping' techniques. Shaking hands, kissing, saying "How are you?" without meaning it are all forms of 'coping'.

It gets serious when you have to discuss things with yourself like "Do I go out of the house today?"

"Will you still feed me, will you still need me ...."

It seems that I have the bone density of a 65 year old.

At least that's what my Internist told me when he showed me the results of the tests.

It really upset me - it still does.

I'm just not ready to be 65 yet, honestly I'm not. I don't think I will be when I actually do turn 65.

Although, technically, my bones have already turned 65 without me.

Which I consider to be inconsiderate at the least.

How many other bits of me are gonna go kamikaze before their (my) time?

OLVG (3)

Here we go again as they say ....

Its not often that I write about events that are yet to take place - I'm usually a whiner after the fact. But in a few hours I'm back at the OLVG for the results of the bone density scan etc. and I'm not looking forward to it.

At the moment I'm saying to myself that it'll be alright, that I'm exaggerating, that it'll all turn out to be a storm in a teacup. But the fear that it could be something, anything, is there lurking at the back of my brain.

I'll find out when I find out.

OLVG (2)

Back to the OLVG again - this time its another friend who has been raced into hospital with an infection on top of his Hodgkins ....

.... and have just heard that another has also been admitted last night with an unspecified infection.

I'm actually lost for words a little.

OLVG

In a few minutes time I'm on my way to the OLVG.

Again.

In the last few months people I care about have undergone the following:

2 Deaths (1 Hiv related)

1 near fatal Heart Attack

1 Hodgkins

2 cases of partial paralysis (with no apparent cause/Hiv+'ers)

1 Infected anal abcess with complications

and to be honest I can't be bothered recollecting the others.

So, and with all respect to those who are experiencing the same, don't tell me what I can and can't do regarding disease, death and dying.