Not Dead Yet

Mother

2013-01-22T13:20:00.001+01:00

She's no longer with us.

Physically she's still on this earth of course. At this moment in hospital to recover from her being badly treated at the nursing home for the extremely demented. Of course that's what this is about, dementia. Her greatest fear and ultimately her downfall.

She'd been falling down for years and explaining it away with her 'dicky hip'. What is more likely now is that she'd been having strokes. Starting small and getting larger each time. Leaving her disoriented and alone on the floor unable to get back up again. The last time, we think, for days. But she wasn't, and probably eventually couldn't, tell anyone that something more was happening than just losing her balance. For the last thing she wanted was to be put into a hospital, close second on her list of greatest fears.

No one in England is telling us what is exactly wrong with her, mostly because they don't know, but its probably vascular dementia. Perfectly treatable if caught early on. There's the irony. Her fear of hospitals is probably the reason why she didn't ring the alarm bells sooner, thereby letting the strokes increase in strength and severity until the dementia was full blown and untreatable let alone reversible.

She used her fears as father used his to control my brother and I.

Father told me that I was to blame that mother's mother developed premature dementia, my accident triggering the process. My first night in hospital was with mother in the next bed after she'd passed out upon seeing me.

But they're both gone now. Father for good, burnt and scattered. Mother's brain in much the same state.

Parents

2011-04-10T22:24:00.000+02:00

My brother called. I couldn't be bothered to speak to him so I let it go over to voicemail. I'd pick it up later.

It was later. "Gimme a call when you've got time. It's your brother."

"hallo Martin. What's up?"

Then follows a conversation that even now I'm having trouble placing into perspective. He'd spoken to our mother about my wedding. She'd admitted hanging up on me when I told her. She told him the reason was because of, you know, father and Wolverhampton.
Wolverhampton? What of father in Wolverhampton? When? Martin said she thought we knew … knew what?! The arrest for soliciting for sex in a public toilet, when father got arrested and it was in the papers, and how everyone at church knew it … and how he tried to kill himself with pills but she'd stopped him and told him to pull himself together and how that was just before he died, or a year or two before or so.

My world just collapsed a little. A lot. My childhood. My father. My mother. I know none of it any more. It was all a lie.

… and I was the one who got punished for being queer.

I'm trembling with emotion but I'm not quite sure which one, which ones.

I feel trampled on and free at the same time.

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The Aids Machine

2010-12-02T11:15:00.004+01:00

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!

2010-10-21T16:59:00.002+02:00

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

2010-09-14T11:14:00.002+02:00

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

2010-08-26T14:02:00.005+02:00

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?

2010-08-21T09:20:00.003+02:00

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?

2010-08-02T10:55:00.002+02:00

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

2010-07-23T11:39:00.000+02:00

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

2010-07-22T09:10:00.001+02:00

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

Breaking Point

2010-07-20T17:12:00.000+02:00

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

2010-07-17T09:44:00.000+02:00

"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

2010-07-17T06:48:00.000+02:00

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

2010-07-16T19:23:00.000+02:00

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

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Global Aids Conference 2010

2010-07-16T11:04:00.000+02:00

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

2010-06-28T00:22:00.001+02:00

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

That's enough for this evening.

For sure

2010-06-08T13:24:00.002+02:00

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

2010-05-22T14:11:00.003+02:00

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

2010-05-14T10:58:00.002+02:00

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 ....

2010-05-09T10:49:00.002+02:00

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

2010-04-08T21:12:00.001+02:00

Check out this video on YouTube:

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

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Brain fluid

2010-03-20T14:34:00.000+01:00

"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

2010-03-08T12:19:00.002+01:00

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

2010-02-25T14:44:00.002+01:00

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

2010-02-22T19:36:00.002+01:00

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.