The Chaos Within - And her eyes stayed shut

I went to see Jyoti yesterday.

With the Wake Up Pune campaign I have not had the chance to speak with her or any of the other clients at Sahara Aalhad Care Home. The last time I saw Jyoti was when they were about to insert a nasal feeding tube about three weeks ago because she was not eating. She refused the tube and despite all our arguments to convince her otherwise she remained adamant. Even when Maya and I tried to speak to her of other things to take her mind of the impending tube she knew...

"Don't try to butter me up. I do not want the tube."

Finally we had to leave because our presence was not helping and even as she clutched our hands in goodbye and I kissed her forehead her eyes said, 'don't let them do this to me.'

They had to. Mike subsequently made a deal with her and in a few days the tube was out and she was eating again, but I could sense the betrayal in her eyes as I walked out of the women's ward the last time...

She was a fighter, the ice cream - mango - started flowing down her throat again, and she ate, ate well to make sure that she would not suffer the ignominy of the tube again, and also what in her mind the tube meant - the beginning of the end.

Last weekend Mikey told me that Jyoti's CD4 count had dropped to 19. I was devastated. This was not good news. This meant she was vulnerable and open to all those opportunistic infections that floated around Sahara in search of a host.

Opportunistic infections remind me of Christ's struggle with the demonised version of Satan in the wilderness. After Satan tempted Christ three times Luke's gospel writes that Satan left Christ for a more 'opportunistic time' - possibly when he was on the cross robbed of purpose...

Point?

The opportunistic infections, especially TB wait and pounce and kill anyone as weak as Jyoti was with a CD4 count of 19.

I left Tadiwala Road around 12.30 yesterday. On the way to Sahara, Ryan, a volunteer from the US, called me up and said he thought that I should really come in and see Jyoti. I said 'on my way.' My mind was trying to figure out where I could buy her a cup of Mango ice cream.

Around one 0'clock I arrived in Wagholi and had to stop off to deal with another extremely pressing matter that involves people that we all love and have admired. What I planned to take an hour took almost three.

I told Mikey that I would be at Sahara by two, and at two forty he called me up -

"Get your arse here now, I am suddenly losing Jyoti."

How? Why? What about the Mango ice cream?

When I turned into the lane five minutes later I saw Mikey and Malik standing outside the gate waiting for me. Somehow I knew that I had just saved ten rupees on a cup of Mango ice cream.

I stopped and inquired with that nod of the head and raised eyebrows that we all inquire with from a distance and they both replied with a shake of the head... it stopped me momentarily in my tracks before I walked on and passed them into Sahara and into the women's ward. The green screen was up around her bed in the corner. I walked around it. And there she was. I pulled back the blanket that covered her and Jyoti's eyes were still partially open.

As I stood there with my hand on her chest and kissed her forehead that one last time, a Sahara care worker came and placed two five rupee on her eyes to weigh them down. It was like the passing of a Greek hero into the afterlife.

She was our hero.

This woman stood up in front of almost three thousand people last year in Tadiwala Road on World AIDS Day - Celebration of Life - and declared that she was HIV+ and asked her community to accept her. She did this knowing that her uncle threatened her with no support if she went through with this... something she did not tell us until after Celebration of Life was over.

This woman stood up in front of the community leaders of Tadiwala Road in January and convicted them with her experiences of stigma and discrimination.

This woman walked with me into colleges around Pune and spoke to students of her struggle.

She was rail thin, and she was probably everything that HIV+ people are supposed to look like... but then she spoke with her crooked smile and she was eloquent.

Jyoti taught me that death was not something to fear. She called it her second death, the physical end; her first death was when her family rejected her after she was known to be HIV+.

It is so easy to romanticise this woman. She let nothing stop her. Nothing. She worked hard. She wanted no charity.

When they brought her body out to wrap in white I helped. I felt empty...

Wake Up Pune is about Jyoti and those like her. This same morning I was at a school session speaking about how HIV+ people can live 'positive' and productive lives, and that India has the highest death rate in the world (400, 000 last year according to UNAIDS) only because people are afraid of HIV; those who stigmatise and those who are stigmatised against.

Ignorance, Fear, Stigma, Discrimination... silence. Our stigma chakra.

She was silent and her eyes stayed shut.

Wake Up Pune, but Jyoti was not about to wake up, and these thoughts were all that kept running through my head...

Fuck... just exacerbated as I write because Ajay the rickshaw driver who drives us regularly to Sahara walked in and asked me how the funeral was... and then he asked me if I spoke with her, I said no I arrived just after she died...

"You should have spoken to her, she wanted to speak with you."

I know. I wanted her to eat Mango ice cream with me. I wanted her to smile her crooked smile. I wanted to hear her berate me for not coming to see her for so long.

My hands were wet with her release as we lifted her shrouded body back on to the table. Dead bodies leak remember. And Ryan and I drove with her to the crematorium.

We took almost two hours to get there with the traffic and the Indian bureaucracy playing their roles and finally laid her on a bed of dried cow dung cakes.

The wailing began. They unfurled that sari that I have now seen unfurled too many times over my clients, my friends, and laid it on top of her. Then they opened her shroud so that the family could have one last look at her... and her eyes stayed shut. The wailing intensified.

The men piled cow dung cakes high around her and began to chant. She was a Buddhist. I grew up next to a Buddhist temple in Sri Lanka. I chanted with them.

'Buddhang Saranang Gachchami'

The flames danced brightly. There was little or no smoke. I stood there with my team in the growing heat of the flames and said thank you to Jyoti. Tears fell. A hand reached out and placed itself on my right shoulder. I don't know whose it was. We stood there and watched her last dance.

And her eyes stayed shut till the end.

Goodbye Jyoti.

You are now a part of me.