The Big Difference

Ok, so, back in Pune and it feels like I never left. When we first came home, the house seemed a little empty - we were the first ones back from travelling and there were only 4 of us there. We soon got used to that and enjoyed the space! First time back in a rickshaw and it felt normal - going along the bumpy roads , onto "death road", straight to MacDonalds...or was it Pizza Hut?? I don't remember. Nevermind, the point is I never noticed how much Pune has become home - it's strange to think of what life is going to be like when I go back to Scotland. My mum keeps telling me she thinks she is going to "see a different lassie" - I think she is right.

What I mean is when I was talking to my friend from Scotland the other day she was going on about how she really wanted this new top that she had seen but couldn't afford it, I asked how much it was - 40 pounds! For a top! She kept telling me that her life would be ruined if she couldn't get the money for it because she needed it to go with her new jeans for a big night out! I swear this girl has at least 50-60 tops that she could choose from. 20 minutes she went on. Was I ever really like that?? Unfortunately yes - I was - and not so long ago either. After I spoke to her I thought about how people in Scotland are compared to the people I am working with just now. Here's what I found - most people in Scotland - well not just in Scotland but all over Europe, the US etc etc - have more than they need, no? But, we are always wanting more, constantly complaining about what we don't have and are never satisfied. I think we must spend about 3/4 of our lives unhappy and complaining.

Now - the people I am working with don't have much. I have never once - in my whole time in India - heard anyone complaining about wanting more. Not once. They live their lives thankful for what they have rather than obsessing about what they don't have. They are happy and smiling and laughing all the time - it doesn't matter what possessions they own.

Imagine what a life filled with laughter must be like - you don't need the best of everything to be happy - if anything it's going to make you more miserable because when something goes "out of fashion" you're going to have to get the "latest trend" - if you can't afford it - BAM - you feel like your life is ending. What a way to live your life!

You take a look around this community and you can see people are positive about their lives, positive about things they have in their lives. They don't constantly complain about every little thing. What do you think the world would be like if we all lived life like that?

An after thought - Sometimes life can be heart-breaking - especially out here when you see so many people - like Saraswathi - such a beautiful woman in so much pain. At least now she is free from that. Everyone that knew her can't do anything more but remember her and pick themselves up and carry on. And that's just what they do. They push on and keep fighting this battle.

Esther

Back in Pune, back at work!

I'm back in Pune, and have been for the past week, and as I've said to Hans 'it's all a blur', and it bloody well is! Coming back to the house on Tuesday was wierd, especially since I'd never got any sleep the night before on the bus comin up from Goa! Also when we were stood outside for half an hour, because the new volunteer - Shasma' was asleep! But when we got in the house, everything had changed - the walls had been painted, new lights were installed and the tv wasn't working!! But we got through - Esther, Stevie and I, and we slept for most of the day, the lazy buggars that we are!!

Also, I have never seen my room so bloody clean in all my life, everything had been cleared out into room 4 (where everyone was to put their stuff during the break) and all that was in my room were 2 beds a table and a cupboard, with nothing in it!! And now that I'm back, I still haven't unpacked and it's been a week already that I've been back! I'm so lazy, but I am still getting over the general bluriness (I know your laughing Hans :) )
But seriously, when we first arrived at the house after the break, it didn't seem like our house at all, and I nearly lost the way with the rickshaw driver from Mohan's corner shop! Typical me eh! But there are now guards up on all the balconies, which was quite a shock, and the whole of the outside had been re-painted! It was just madness!

But a week on, I am back at work, and the bluriness was just ridiculous - Ramtekadi had all changed - there were ceiling fans, and the cupboards had been moved upstairs, which also seemed surreal when we went up for our lunch of omletter sandwiches!! I like omlettes!! When we got to Sushma's creche in the morning, all the kids did were cry and baby Rahul who is usually smiling, could not stop crying!! But we soon got them up playing trains! A popular game in that creche! Then it was time for chai, and that reminded me of being back at work, which I was! Then the afternoon came and we were told that the balwadi wasn't happening due to new kids, so the balwadi assistant took us to her house for some Thumbs Up, and I've seen such an audience in my life, all the locals were round for a peek-a-bo!

Then coming home, it seemed like we had never left Ramtekadi in the first place! But it was evident that we did!

Philip Ross

Positive Voices

On Thursday there was an event called ‘Postive Voices’ at the Ambedkar Bhavan. The concept? People living with HIV / AIDS were given a platform to address a panel of representatives from government agencies and hospitals.

The DISHA family turned out in force. The fieldworkers looked immaculate in their matching sarees. Avinash and Hans were smartly dressed in white. With assorted friends, offspring and volunteers coming along too, we numbered perhaps 30 people out of the 200 or so who attended.

Several HIV+ speakers came and addressed the hall. First up was a young homeless woman. I missed her name. She spoke in Marathi, as did everyone else. I understood next to nothing, but I could still sense her passion, and her despair. Other speakers followed.

The panel then had their say. Again I understood very little, but their body language was defensive. They faced some tough questions in the Q&A session at the end, some of them coming from the DISHA staff.

Two small boys were sat on the chairs behind us. The boys started arguing. “Shhh!” I said. They laughed. They boys started fighting. I gave them an old-fashioned look. The boys laughed harder. Hey ho. In the end I kept them happy by taking a couple of photos with my digital camera and showing them the snaps.

The session came to a close and there was the usual networking and number swapping. Hopefully everyone got something from the event.

The next morning a group of us went to visit Sahara. Cyrus wanted to shoot some video footage, perhaps to be used for fundraising. We were all enthralled as Errol sat patiently and told us his story. More on that another time, but the man is amazing. He and his team are saints. As I checked the video camera monitor, It looked like Errol had a halo. That should come as no surprise to anyone.

Later we returned to the DGS office. After a while I popped out to grab a quick snack from a nearby food stall on Dhole Patil Road. On the way I passed the woman who’d spoken at Positive Voices. She was accompanied by the two boys – her sons, evidently. They were all dressed in the same clothes as they’d been wearing the day before, as was I. The difference was that they’d slept on the street while I’d stayed overnight with friends after a dinner and a few drinks. I waved a hello to the boys – they seemed to be getting on better than yesterday, fortunately. They gave smiles in return.

At the food stall I bought some chapati bhaiji to take away. As I was leaving, The woman and her sons were walking by. Suddenly I didn’t feel very hungry any more. I handed over the parcel of food. “Can you use this?”

I looked at her two sons. Shit - I’d better get some more.

The pulav had just finished, so I picked up two wada pav and gave them to the boys. I collected another chapati bhaji for myself, said goodbye, and walked the two minute journey home, deep in thought.

As I opened the door to my flat I picked up the Indian Express. Straight away I saw a story about the Positive Voices event.

“‘Why doesn’t the government help us?’ It’s a living hell for HIV patients who cry out for help” ran the headline. There, in the first paragraph of the story, were Surekha’s words – she had a name now! – translated into English.

“Mee sadak var rahte. Mala HIV zhale aahe. Mazha gunha nahi. Pan mala rickshawale martat. Station var police hakaltat. Shasan amhala ka madat karat nahi.”(I stay on the footpath. I am HIV positive due to no fault of mine. But autorickshaw drivers trouble and the police kick me out of the station premises. Why doesn’t the government help us?)

Surekha can speak for herself. I hope people will listen.

The Chaos Within - See what it can do...

On Tuesday last Milind died at Sahara.

Milind was a DISHA client. He came to us on the Friday. He lasted just five days. When I visited Sahara on the Monday he lay there and tried to smile his greeting. He hadn't met me before, and he was trying to thank us for taking care of him. Lata asked me to take a look at his chest x-ray... I'm no doctor but you pick things up after a while. The man's chest was a series of patches held tenuously together with strands that the TB hadn't got to.

I looked at Errol and he confirmed my feelings with a shake of his head. The next day I got the call.

"Baba he is gone."

Now, I hardly knew the man, and I didn't have a relationship with him like I have done with others... yet, for all of us on the team, Milind was not just another faceless one to die of HIV/AIDS related tuberculosis. He died because of stigma. Over and over again we tell of how stigma and discrimination doesn't allow for people to come forward early and declare their status, how people wait until they are so sick, that getting help, or any form of comfort for the pain overcomes their fear of stigma... the stage where you don't give a fuck what people think but you just want the pain to go away somehow. Milind was a 'classic' example of this. He had lived most of his adult life in Tadiwala Road. He had known about us since last year, but he had dared not come forward.

Milind was also more than a 'classic' example, his death once again underlined to us that 'every man's death' affects us, and that we should never 'send to ask for whom the bell tolls' because it does toll for us.

I met with the family and we discussed what was the best approach to the situation. His mother was distraught and could not take a decision, so her nephew stepped in, and after much procrastination decided that Milind's body would come home, the pujas would be conducted and then, it was off to the crematorium. I know that Lata had a major part to play in this decision and I am proud of her. She helped the family not only accept Milind's body, but also helped demystify HIV/AIDS - You can't get it from a dead body. The virus does not fly off in search for another host.

Paul was amazed at what he called 'turn-around' time. One minute we have a client at Sahara, and within a few hours he or she is ash.

Today I visited Sahara with Cyrus and Danny from Duke University, Paul, Natasha (my sister, not Smiler), Stevie, Esther (Link) and Shazma my brilliant little AISEC volunteer from Nairobi working with DISHA. Cyrus interviewed Errol, and although I had heard his story a few times before, he filled in a lot of the gaps, and it was great for all us to get an insight into how Errol works. How he ticks. And it isn’t the moon.

Walking upstairs I noticed that Errol had moved the woman's ward downstairs. Errol's team is depleted and this makes it easier to handle the clients.

Saraswathi was sitting up! Only just, but she was sitting up. Her oral thrush is getting better and she is trying to speak. She is communicating with sounds now, not just her tired eyes, and shakes of her head. She is fighting.

Errol said, "Don't get too excited baba, long way to go."

Yes... whatever the outcome though, she has improved and Errol and his team had done an amazing job with little or no resources - "we have love na baba, see what it can do..."

Yeah, see what it can do.

The Chaos Within - 'We'll do it baba...'

I went away last week.

Four days in Goa. The most difficult decision amounted to choosing a restaurant to eat at every night.

The beach, the sea, the waves, the pack of dogs (including tri-pod with his retractable legs), the company... I kept my phone on.

On my way back to Pune I contacted Errol, 'How is Saraswathi?'

'The same.'

I went to see her today. Her mum was there when I walked in. She sat by Saraswathi's side, stroking her legs, massaging them, straightening them out... this was the same woman who put Saraswathi in a room and willed her to die.

Nothing is ever the proverbial black and white is it? Layers, textures, its all so fucking complex.

Saraswathi responded better to me today. She can't speak because she continues to struggle with an oral thrush infection, but her waggling of the head has more purpose. It is more defined and readable.

She wears a powder blue shower cap now to keep the hair off her back. Her legs are dry like tinder. Her mother began to oil them as I left. I put my hand on the mum's shoulder and smiled. Saraswathi's daughter was smiling too. 'Mummy is getting better.'

I wish she was. I so fucking hope she is. It is still too early to tell. Errol and his team are doing all they can for her and her family visits almost every day. Their reaction to her at Sahara could confuse me but it doesn't. They want to make sure their daughter/sister is comfortable. The mother has however removed all Saraswathi's jewelry. Errol says this depressed Saraswathi more, but her mother does not seem to trust the Sahara staff to look after her daughter's gold trinkets. They can bathe her and feed her and medicate her but cannot be trusted with gold earrings.

Complex.

Errol was on a break today so I took him to the Shisha cafe to relax. After a couple of whisky and sodas he turned to me and declared that 'People think I am mad to be doing what I do.'

"I don't know how I could do anything else. God has saved me Hans and I have to serve him by serving the brothers and sisters that are dropped at my door."

He smiled. Sad. And then, happy.

"We'll do it baba. You and me. We'll change the way AIDS is looked at in Pune."

I nodded. We have to. The next six months are going to be busy. Deep Griha is still on holiday but Paul and I are using it to plan the months ahead. And Errol and his team are part of that plan.

Today my visit to Sahara included Smiler and her friend Sabha who had collected bed sheets and clothes and even the odd lady's purse!

They were particularly apologetic about the purses, but as Errol said 'my women clients would love a purse. They also should enjoy these things na.'

The bed linen will help and the old clothes, if they don't fit will be cut up and used as rags. Sahara always needs rags, if nothing else. There is a lot to mop up, there is a lot to soak up, there is a lot to wipe away.

"We'll do it baba. You and me. We'll change the way AIDS is looked at in Pune."

With the teams we have. The Mayas and the Salims, yes Errol we will.

Mixed Reactions

Finally our travelling time has arrived. I'm sitting in an internet cafe in Arambol, sun shining, waves crashing, wondering what's going on in Pune!! That's not right.

Me and Stevie have met some great people out here - when they ask what we are doing in India there is a mix of reactions. Some people think wow that's great, some think I don't think I could handle that and some people think Hmmm..... Ususally it takes a lot of explaining to get them to understand the work that we do. I said to one guy that I have great fun working in Pune and his answer was "how can you have great fun when you work in the slums??!"

My immediate reaction was "What the fuck?, How do you make someone who hasn't seen what I've seen understand?" So, I told him where I work it just like anywhere else. It has it's hard moments but I work with children with smiles that will brighten up your day, with adults who have more life in them than most people I know back home and with a group of people who are becoming the closest friends I will probably ever have. I then asked him "Can you say the same thing about anywhere you have worked?" His answer "No." That was it, just no.

Esther

The Chaos Within - Saraswathi II

I visited Saraswathi this morning.

20 minutes before I got there one of Errol's client's expired. Tuberculosis. I was given a mask and rubber gloves.

"Come help us pack the body."

He was still warm.

Another client lay on the bed beside him.

"He is next. By this afternoon, maybe 2pm. Evening the latest."

This guy just lay there. His pulse was faint. His breathing was laboured. Tuberculosis was slowly claiming him too. He did not respond to our touch or words.

The other clients in the sputum positive ward: One slept soundly. Another watched us work as he combed his hair and gave himself a shave. And the other sat up and watched his fate unfold. There was no fear in their eyes. None that I saw anyway. Just... 'fuck it. That's me soon.'

We packed the dead body in under ten minutes. And then carried it out and laid it on the table to be claimed by his family.

The volunteers continued to paint and add finishing touches in the room next door.

I went up stairs to see Saraswathi. She was getting a sponge bath. She lay there stripped naked. Her skin pulled taut over her slender frame. She looked like a little boy. Breasts that had nursed three children had melted away. When she saw me her faced screwed up in pain. The ignominy of my presence? Can she be more humiliated? I stroked her head and left.

Errol spoke of 'One Flew Over the Cuckoo's Nest.'

"Sometimes I just wish I had the stuff to end their suffering."

Saraswathi's eyes with her non-existent tears... fuck. I understand what he means.

In July I plan to spend a month with Errol with half of my team being trained in hands-on-care and 'packing' of dead bodies. There will always be unwanted and rejected people for us to learn from...

Everyone knows that Errol does not turn anyone away. A few months ago a pimp dropped off a young 17 year old. Her uterus was filled with pus. Even after she was sick she had been used to give clients oral sex at night. When the smell became overpowering and the pimp could no longer disguise her sickness, rather than abandon her on the side of the road and have the body traced back to him, he brought her to Errol. She died within three days. There was no one to claim her body.

Today Errol tells me that Saraswathi is worse somehow... and that she may have only 8 days left. I listened in silence. I went back upstairs and sat with her for a bit. She had retreated in to her distance. She didn't know I was there.

That call I dread can come at anytime now.

But I am not ready for it... I never will be.

The Chaos Within - Saraswathi

Saraswathi... her hands are tied to the bed with a torn up silk sari.

Why? She is wasting away. She refuses to eat. Oral thrush... her throat is full of pus. She can't swallow. She can't talk. And the nasal feeding tube is so uncomfortable that she musters up the strength to rip it out. Solution - hands gently tied in a position that is not too uncomfortable...

Is that possible?

Well Saraswathi can't tell us.

She manages on occasion - if she feels like it - to get out a couple of words. A few days ago when Maya asked her if she recognised me, her eyes screwed up to cry, no words came out, and she said "Brother." As often as I can, I sit with her, and have convinced Errol that while I am with her that her hands can be released from her fine silk bonds.

Little pieces of me die when I am with her. She keeps looking at me and crying silent non-existent tears.

Before the feeding tube Errol gave her two weeks. Now she has improved a little. She is shitting again. It is a crude indicator that she is receiving nutrients.

What can we do for her? She is too weak to take ART. It will kill her. She weaves her fingers into mine... her grip remains surprisingly forceful. When we took her children to see her, again silent non-existent tears. Her three kids could not contain their own. Their mother is on the verge of life. She has been pushed there. We are trying to pull her back, but fuck... I dread the call.

I love this woman. The strength she displayed by picking up the pieces of her life after Nagesh died was inspirational. She used to smile at me with her crooked teeth and chat whenever we saw each other at the Nutrition Centre.

The last time I was at Sahara I could not manage more than a few moments with her. I could not ask for her hands to be untied. I only managed to stroke her head whisper a few words to her and walk away.

The Link volunteer team - one of the best bunch of kids we've had for ages - is painting Sahara in stages. They are bringing colour and life to the clients and a welcome distraction to Errol and his team. I don't think they realise how valuable their contribution is to a body of people - Errol and his team included - that are shunned by society.

On Monday when I parked the van and asked if it would be safe, one of the Sahara team quipped - "Everyone knows this is a home for HIV+ patients. They give us a wide berth. Your van is safe." We laughed. Fuck, we have to laugh.

Now that Sahara and DISHA have decided to work closer together - Deep Griha's governing board approved the proposal - there will be more laughter. More hard work. More tears. More little pieces that die.

Does the laughter resurrect the dead inside me? I don't know. It must.

Errol and I have laughed so much this last week. Especially when I ask people to guess how old he is... he's 48 and looks and dresses like he's in his mid 30s.

I hope Saraswathi smiles again. I hope she shows me her crooked teeth the next time I see her (tomorrow). I hope she speaks to me, even if it is to say that she is in pain.

Now that we can get food down her through the feeding tube, medicines follow. It will help with the oral thrush infection. Errol tells me on the phone everyday that she is improving “very, very slowly.”

Maya and Lata who visit her everyday - Saraswathi has decided that food and medication is more palatable from their hand - on rotation say the same thing. She is getting better.

I still dread the call.

4 ways to get HIV. PAY ATTENTION!!!!!!!!!!!!!!!

HIV. I understand. Or at least I think I do. I have no hestiation in shaking the hand of a person living with HIV thoe I hesitate to write any names of people that I know are HIV+. "Did I ever have a problem shaking hands with a person living with HIV?" I hear you ask. The honest answer is that I don't know. Im not shure that I ever got the chance to find out. Befor coming to India I never had the oppertunity to shake hands with someone that I was aware was HIV+.

HIV can be transmitted through 4 methods.

HIV by the way stands for Human Immuno deficancy Virus. AIDS is Aquired Immuno Deficancy Syindrome.

The first is mother to child. As far as I am aware this is at the birth itself, not in the womb.Its to do with all the fluids flowing around at birth. Clearing it up can help reduse chances ect. But No1 is Mother to Child.

Way number 2 is shared needles. Useing clean ones would be advisable.

Then we come to 3 and 4.No1 is an unfortunate fact of life, a small little argument against the existence of God (but thats a hoal different can of worms and ill do another blog on it). No2 is just a sense of being careful. I myself have a phobia of needles and hardly need another reason for disliking them but there you go.

No 3 is shared blood. This needs explaining. In a word (or 2 words) it comes from 'fresh blood'. A car crash and one person with HIV bleeds into another without HIV, they can both be infected. Operations ect in hospitals with HIV+ blood can give an unefected person the virus.BUT if the blood is frozen or left out for a long period of time the virus will die.

NO 4, probibly the most famos of the causes is unprotected sex. This last issue, in my oppinion, is little more than a mini mine field of problems. It isn't even solved if both are HIV+ as clearly it doesn't matter with ways 2 and 3 (at least I don't think it matters. But what if ones worse than the other? somthing to find out I think)

Anyway, with unprotected sex there is the problem of point 1. In a sence these need to be taken together. Using a condom is the straight forward solution, especially if you are having sex only for plesure. But, the biological reason for sex is to make a new life, and if someone who lives with HIV and someone who doesn't want to start a family then there is a horrific question that needs asked.

Should they?

The honest answer is - I do not have a fucking clue. This, in my oppinion, is where all the mines are.

OK, let me show you this. A man has HIV. A woman does not have HIV. The risk is that the women will become HIV+ and then they will create a new life that will go through life being HIV+.

Is this fair?

Is it fair to deny the man a family because he got HIV? What if he got it through an operation on his leg afew years back. Is he to be denyed a family because there was a problem on his leg?!

Can you sit another human being down and tell them that they must not create a life of their own?

But what then about that purely innocent life that hasn't even grown into a twinckle in the mother's eye?

The word your looking for is shit. or fuck. or bugger. Or whatever word floats your boat.

AH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Pure mine feild in my oppinion with no helpful map to show you the way through.

Now can you tell me a 5th way? The answer is NO!



THERE IS NO OTHER WAY TO CONTRACT HIV!



Right. Swim with people living with HIV. Swim in a pool full of them you will not contract the virus. Kiss as many people with HIV as takes your fancy. Hell go for a world record attempt and see if your toung can get further down a throat than any other toung has ever done - you will not contract the virus. Get bitten by as many mosquitos and bugs as possible and you will not contract the virus (thoe still not recomended as other deseses like malaria might become a problem). Shared their toilet and you will not contract the virus. You got the freeking picture already?!!!???!!!???!!!???

THERE ARE ONLY 4 FUCKING WAYS.

Just in case youv been sleeping through this let me list the 4 ways.

No.1 Mother to Child. This is the one where the purely innocent suffer.

No 2. Shared needles.

No 3. Sharing fresh blood

No 4. Unprotected sex. The mine feild in my oppinion.

No 5. This does not exist. No what ifs? No what abouts? NO!NO!NO!NO! The 4 ways are listed above. How many times do I have to write this people!!!!!!!

PAY ATTENTION!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Theres alot of jazz about stigma ect but I think this has been enough for one blog but ill finish off by repeating the point of this blog -

No.1 Mother to Child. This is the one where the purely innocent suffer.

No 2. Shared needles.

No 3. Sharing fresh blood

No 4. Unprotected sex. The mine feild in my oppinion.

THERE IS NO OTHER WAY!!!!!!!!!!!!

AH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

David Lyon

ps - Incase you didn't get it already

No.1 Mother to Child. This is the one where the purely innocent suffer.

No 2. Shared needles.

No 3. Sharing fresh blood

No 4. Unprotected sex. The mine feild in my oppinion.

THERE IS NO OTHER WAY!!!!!!!!!!!!!!!!!!!!!

AH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!