The Chaos Within - A togetherness

Its Sunday afternoon.

The DISHA Cricket Challenge Trophy 2006 just ended. The emotionally charged final resulted in the fielding side walking off the pitch when the umpire refused to give the batsman out because he determined that the catcher did not have control over the ball.

Bringing the game into disrepute? You should have seen the outfield. The dives belied the hardness and debris of the Railway grounds. It is also a popular venue for Tadiwala Road's Injecting Drug users (we cleaned up as best we could)... not ideal for a match that promotes HIV knowledge, attitude and skills.

We work in an environment that is can be harsh... but cricket still gets played. HIV prevention can still be effective, and it is vital. Most of the kids that played the tournament from the different youth mandals (groups) in the community often visit sex workers. This is both frowned upon but also accepted: boys will be boys.

Boys will be boys who contract HIV... Avinash's sessions between the innings of every game are short but do not hold back on the realities of HIV in Pune, and also on how 'boys' can and must protect themselves.

The pseudo-conservative culture of Tadiwala Road and communities like it is an obstacle not just to HIV prevention skills but also to attitudes towards HIV+ people. Attitudes towards people who become HIV+ after visiting sex workers without taking the necessary precautions. Boys who will be boys ostracised from the youth mandal because their rights of passage or initiation went horribly well. They had sex. They contracted HIV.

We have to create a culture of young people that are less accepting of risky behaviour in their peers and also themselves. For this education, and sustained education, in different settings, is required. This is what the DISHA Cricket Challenge Trophy tries to do. And I can't help be proud of my team for doing this so well.

I am also fucking proud of Jyoti. She has battled hard. She is eating again, and has refused to give in... she has the will remember... and it people like her that give us the will to continue what we do... motivate us to work into the night, to somehow make a difference to the lives of those who live with HIV, and also to try and arrest the spread of HIV in this city.

The Wake Up Pune campaign is bringing professionals together; NGOs, doctors, social workers, counsellors, HIV+ speakers... yet, Jyoti's act of defiance, and it is fucking defiance - I will not go quietly into the night! - brings us together too. Often more effectively than any campaign.

It is a togetherness that cannot be explained. A togetherness that takes hold of us deep inside and does not allow for despair to set in. A togetherness that is vital.

The Chaos Within - Jyoti

Jyoti had a rough night.

This afternoon when I went to visit her she lay in her bed stared at me and refused to speak for almost 20 minutes.

According to Sam who was on night duty Jyoti had sat up all night and stared at the wall. She then had an episode. She was emotionally unstable. A combination of shock and denial.

Last night all she kept muttering was:

"I am ok. I am healthy. My children are fine."

It was a long night for her. It was a long night for Sam. He finally got her to sleep.

When Jyoti spoke to me after her silence her first words were, "I am healthier than you are."
This was the first thought in her mind.

Jyoti was always thin, but in the weirdest way with the further weight loss she looks both 16 and 80. When she smiled it was a disturbing parody of a skull. An image out of Pirates of the Caribbean. Skin stretched taut over bone.

I sat with her almost all afternoon. She cannot keep anything down. As soon as we arrived we discovered that she had just vomited out her lunch. She had eaten very little. She held on to me, and to Maya, and would not let us leave her side. Her breathing quickened every time we did.

I love Jyoti. She is strong and single minded. As I wrote in my blog after World AIDS Day in 2005 Jyoti spoke at the Celebration of Life event in Tadiwala Road despite knowing that she was going to be disowned by her uncle for revealing her HIV+ status to the community.

She has since spoken to local community leaders and colleges with me, educating both young and old about how HIV is not an end to life...

This is hard.

She now lies on her back even as I write with a needle stuck into her painfully fragile arm with the drip drip drip feeding her what she needs to survive.

I was with her when they put in the drip. My hands held her face as her eyes looked distantly into mine... she was not with us. I watched the blood fill the tube as they stuck in the needle and as a couple of drops escaped I wondered at how fucked up this virus is. That blood contained her end. Those drops potentially carried the difficult life of HIV for someone.

There is life after HIV and I see it every day around me, but we cannot deny that HIV has brought death to millions and... Jyoti... she will fight. I know she will. And I know she has the will.

She has the will.

I promised to return to see her tomorrow. I promised to bring her Mango ice cream. She vomited out half a cup of vanila that we fed her just before we left.

Maya said she felt afraid when she saw how Jyoti had deteriorated after the death of her friend, despite the hands on support of the Sahara team. I felt afraid too. She is sick. Her lymph nodes are swollen. She is in pain. But she has also somehow distanced herself for now.

I hope she chooses to return.

The Chaos Within - The taste of the crunch

Back from Lanka. Been back a week actually. I came back early because I couldn't sit in Sri Lanka and miss the lead-up to Wake Up Pune. Idiot. I should have enjoyed sitting at my dad's just outside Kandy with the sound of the river buzzing in my ears and got some reports done.

The reports are getting done but only amidst the frenzied activity of the campaign... its crunch time... crunch time... we can almost hear the crunch, feel it, smell it, taste it...

The team of Deep Griha volunteers has been outstanding, and even as I write this the clock is about to tick tock 8, and Coen from the Netherlands is working on posters and fliers for the Sahara band from Delhi who are doing three gigs in the city. The office is deserted. It’s just the both of us.

It is far from peaceful however because a bunch of kids in the community have found a secret cache of fireworks left over from Diwali... fireworks, a loose term for gunpowder, and there is noise. A lot of noise. It has been going on all evening. Paul threatened to go and piss on them... the fireworks that is, not the kids. I think. Anyway... Paul, Jenny, Sam and Coen have been working overtime, and so has Avinash.

Last night I accompanied five models for the Wake Up Pune photo shoot. Four of those models are HIV+ and the other was HIV Positive too. The studio was in a part of Pune we do not venture into often and when we got there was another photo shoot going on with rather glamorous young women all painted and preened and the six of us had a giggle at how scruffy we looked. Our models from Project Concern International, the HIV+ network in Pune and DISHA enjoyed themselves. They were as professional as anyone could ask for, and you would have thought they had done this all their life.

What is it in us that transforms us in front of a camera? The need to look our best for possible posterity? Pride? Self image? Vanity? No… as I watched them pose very seriously and listen to the directions of the photographer I could not say it was any of these. It was something else.

I don't know what that something was... but whatever it was, it was there in those five very special people who agreed to have their faces plastered all over Pune in the poster and billboard campaign. They risk stigma and discrimination in this city as a result but were still willing to come forward to educate people on how normal - I hate the word - HIV+ people can look. These are not sick, desperate, dying individuals that HIV is so often associated with our city.

But the sick and the dying and the desperate exist. My client Jyoti is currently at the Sahara Care Home, and her healing is slow, her gorgeous friend who was in the bed next to her died last week, the same woman that I sat with and shared dinner with on the night before Diwali. This has affected Jyoti, naturally, and her recovery both physically and emotionally will now take longer.

Raju Khirade and his family were kicked out of their house by his father, and were threatened with the streets before we finally found them respite at Sahara today. They were desperate, and desperation transforms people. There case is being put before the Human Rights Commission but the process is slow. His kids are oblivious to all but their mother’s tears. They appear to accept that the family is not wanted, and their smiles are ever at the ready for anyone who cares to look their way. Courage even if they do not consciously know what courage is.

Last evening Avinash came to me with the news that one of our HIV+ clients is working as a female sex worker in Tadiwala Road. This does not mean she is desperate, and for us the main issue is that she is protecting herself from repeat infection and her clients from HIV. There can be no moralising. My friends with the Asia Pacific Network of Sex Workers will echo this. “Don’t give us sewing machines give us human rights” remember. It is however a concern, especially since she is not willing to discuss it with us, and it will take a while for us to engage with her and let her know we are on her side without scaring her off. But we have to do it. And soon!

That taste of the 'crunch' fills our senses. It pushes at us and we push back. It is what we do best.