Disclosure

By God's grace we see people with HIV living longer, and living better than ever before.

Thanks to access to life-extending medications, many are living well beyond what we would have expected even as little as 5 years ago.

Since we have started a testing and counselling centre, we are also seeing a different set of people as well. Till now Jeevan Sahara Kendra was working primarily with the very ill - and with their survivors. Now we are coming into contact with people who are earlier in their HIV disease. The sick welcomed home-visits. Those who recently found out about their HIV - and are not very sick - often do not want to be met at home. There is too much at stake for them. Loss of face can mean loss of everything if others find out they have HIV.

Most put off sharing about their HIV status with others for another day. Coping by denying / procrastination.

Despite the medical advances - we still see the deep roots of fear and loathing around HIV.

How to over come this? Our media has had campaigns - our film stars have showed up at 'AIDS Prevention concerts'. Everyone seems to know at least a little about HIV. But at the same time the deep fear and visceral hostility and apathy continue.

A recent contact who sadly succumbed to a TB infection last month is a case in point. After his untimely death almost none of the relatives came to his funeral. Some came wearing masks (this was prior to the main swine-flu scare in Mumbai). The family as so grateful when our team visited the day after the death and spent time talking and listening to the remaining members.

With so much fear - is it even possible to share one's HIV status - especially if it is HIV positive?

We were challenged last month by Bobby Zachariah - who recently moved on after having served with the Salvation Army's AIDS programmes for the past 12 years. His point was that true community-based care will only happen when we start including the neighbours in care. And this only happens with disclosure. When people with HIV tell others about their status.

Our dear friend John Forbes challenged us on this at a retreat that he lead for Positive Friends of Faith. Quoting Psalm 51.6, he reminded us that God desires truth in the inner parts. As a person living with HIV - and thriving - John helped us see that understanding our status and coming to terms with the reality of it is essential for any real change and transformation to take place.

Its just so hard.

So many whom we are meeting these days want treatment. They just don't want others to know. Be it fear. Be it guilt. Men are not telling their wives that they are HIV positive. Women are not telling their partners that they have HIV. How to move forward? How to help our friends take a humble but active role in confronting their own HIV status?

And can we even move a step further?

Could we see disclosure as not a thing to fear, but a tool to empower? A way of stating clearly and participating fully in the community - even if there seems precious little community around? Could we expect God to help individuals own up to their loved ones? Can we see relatives and friends to support and forgive and encourage so that people with HIV can take the next step and live lives in the open instead of in hiding?

Its strange that though we have been involved with these issues so long, that we are still working on the essentials, the basics.

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I am due to lead a JSK staff counselling study on the topic of Disclosure on Friday. Prayers and suggestions most appreciated.

picture from the www - not known persons to us - for illustration only

Dinner in honour of Yashmeet

Yashmeet - the wonderful wife of Sheba's brother Peter celebrated her birthday on the 2nd of Sept.

We would have loved to get on a Kenya Airways or Air India flight and make the hop over the Arabian Sea to meet them in Nairobi.

Since we could not do that, we celebrated with a small supper - chappatis and channa - salad and dip - and a banana cake! A happy birthday song and the candles burning here reminded us of our loved ones scattered so far. We prayed for Yashmeet and Peter and their lovely daughter Anmol on this special day.

Blest be the ties that bind...

Looking back, looking forward

Last day of August. We had a review meeting with our team at Jeevan Sahara Kendra to think about this month that has slipped by so quickly.

Our home-based care teams have continued to meet our dear positive friends. The clinic and in-patient unit have ministered to others. A small number - only 7 - people were tested for HIV - but 3 were found to be HIV positive. Our church training batch saw two sessions with wonderful folk from Living Waters church forming the back-bone. The 3 seminary interns we have have pitched in superbly. The self-help groups met once each - small steps for women with HIV - but necessary, though the yields still seem low. Varsha who works with children at risk now has 5 from HIV affected families coming regularly - and visits 21 special kids in their homes. Varsha does all this while seriously pregnant herself!

And so it goes.

This week saw us meet 4 new contacts. Two widows from Thane - both with 2 children each. Both HIV positive. A young man who was recently diagnosed and married just 2 years back. He has a 6 month old baby and is afraid of telling his wife. An older man - 50 plus - who hails from a distant suburb of Mumbai but really appreciated the care and attention he got.

Each person so precious.

We realise this especially when someone leaves. Tonight it was our turn to bid farewell to Sanjeev Mehto who starts nursing training at the Duncan Hospital, Raxaul in mid-Sept. We have enjoyed him over the last 2.5 years - both at JSK as well as in our house-fellowships.

Earlier in the staff meeting we were working on a basic set of beliefs for our team - and a basic set of values. Valuing people was high. We realise that we don't always put this into practice in the day-to-day, minute-by-minute way of living. But we do want to see a celebration of each other as part and parcel of who we are. It was a lovely time as both the Jeevan Sahara and the church family met and thanked God for the time Sanjeev has spent with us. We look forward to further involvement as our lives continue to intertwine.

Lego dreams

One night, when I was in first standard, I had a dream.

We were living in "Elim" - the OM base in Nana Chowk, Mumbai - and at that point our family was in one section of a cavernous ground floor, partitioned off with unpainted plywood walls.

As kids, we had inherited some lego pieces from someone. With them were some pictures of other sets and buildings, using far more bricks and pieces than were in our collection.

My dream was that our toy cupboard was full of new lego sets. Full. Brimming with them. I went and opened the cupboard and took them out. Unbelievable.

When I woke up, I repeated the action.

I went to the cupboard and opened its wooden doors.

No new sets. It was all a dream.

Looking back its remarkable that the dream remains so fresh in my memory. Perhaps the disappointment of seeing the still largely empty cupboard?

Over the years, however, the dream actually came true! We were given various sets of legos - some hand-me-downs, others purchased from stores after much debate and choosing - courtesy of our German relatives. By the time I finally grew out of lego (did I?) we had a sea of pieces that could only be stored in a suitcase. The inheritance of plastic bricks is still very much with us, thanks to careful storage by my parents.

I was reminded of the dream by the lad in the photo below:


Enoch currently lives and breathes lego. This morning the first thing I heard from him was the clink of him putting pieces together (yes - the Stefan / Andi lego hoard is still very much in use by this generation). When Enoch comes home from school he throws off his uniform and goes straight to the legos. In between we have numerous spreadings of pieces in different parts of the house as various games are played by Enoch and his merry lego-men.

In Enoch's childlike openness he is candid enough to say that he wants "a whole world of lego." It is my parental duty to explain how it would be best for Enoch to fully use the amazing set that we already have before dreaming about getting more.

How good it was that I did not have my dream come true - at least at that time when I dreamed it. We want so many things - seemingly so badly. But in reality, so few things are really needed. Our task is rather to make the very best use of what we have been so generously given. I think that growing up Stefan and I were tremendously blessed by the limits on what we got (though our childish hearts did not always appreciate it at the time).

Jesus (quoted by Paul in Acts 20.35) says that it is more blessed to give than to receive (interestingly, a statement not recorded in any of the four gospel accounts). It it really more blessed? Most of us think of being blessed primarily by what we have. This was brought out last week by my good friend Aboo. He pushed us to think this way: our greatest blessings are those places where we are able to give - in our homes, to our spouses, in our work-places, in our fellowships. Each place where we are able to contribute is of far greater value to us than how many toys we have. Each person who we are able to invest in - is a blessing to us!

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12 AM - Sunday morning! Thanks for tuning in - the house is quiet. Sheba and the kids are asleep. The fresh smell of just-baked banana bread (the reason I am still up) is around me. The fans are whirring in our hot-monsoonal evening. We had a lovely full Saturday - meeting people, praying, resting, being together.

A final shot: Enoch's latest creation (with co-creation and conceptualisation by Enoch's Daddy - one of the great things about kids growing up is the unashamed opportunities to play with your kids in/with your favourite childhood games).

Thick and Thin

Manohar is depressed.

And no wonder.

Manohar has HIV. His wife has the disease too.

He has been on the ART medications, which helped for some time, but now they are not doing their work.

Manohar has been losing weight. He is losing his sight in one eye. He is weak and has found it hard to go to work.

Manohar lives on the outskirts of the Jeevan Sahara home-based care team's programme area. The team has met him over the months, but often found him at work or away in his village.

Manohar's medical treatment is failing. He needs to be started on the next level of medications - far, far beyond any capacity to pay.

A few months ago we tried to get Manohar onto 2nd line treatment for HIV, through another organisation which has helped support people on these medications. This programme has an office far on the other side of Mumbai. It was very hard, but we encouraged Manohar to go, and for the past 2 months have been following up on him.

Two days ago the organisation called up and said that yes, Manohar needs 2nd line ART - but that he should get it from the government. We could hardly believe what we were hearing. Why did they not tell us at the beginning to approach the government?

How to explain to this man that we are now going to try with the government? Our staff took it in the chin and broke the news. This afternoon they went to the government hospital for a referral to the main HIV hospital in south Mumbai. Tomorrow they will try to go with him there.

Its hard when you are poor and sick. Though we are grateful for some facilities that are their for people with HIV - we see so many challenges in getting them - on time - while hope still lasts.

At the same time, we appreciate the courage of each one of our friends with HIV - and our loyal and gentle staff (who have their own bad days too) who advocate - listen - and are their with our friends with HIV - through thick and thin.

Take a second look

Collecting to Survive - by Dinabandhu Marndi

Pardon the radio silence. Things continue to happen at the normal Eicher velocity.

Just wanted to bring to your attention some positive coverage that the Reflection Art Gallery - ably run by the Delhi Eichers (Stefan in particular) - is getting. One of the newer TV channels has profiled them on their website - which you can access: here. Take a look at the 'galleries' of the 5 Art weeks that Stefan and the team have hosted so far. Amazing.

It was a thrill for me to pick up the Delhi Edition of the Hindu Newspaper (one of the best we have in India) in late May this year and see write-ups about the exhibition that Stefan and the merry folk at Art for Change Foundation were running.

The regular Reflection Art website is: here

Enjoy. Be provoked. Think. See.

On Naming

One of my favourite professors at college was the amazing Dr. Paul Rothrock, taxonomist extraordinaire.

To walk with Dr. Rothrock (my Indian upbringing still cannot get around calling professors by their first name) is to walk fast. The little man is a bolt of lightning on a field trip, moving ahead, seeing an interesting plant, looking at a leaf, and on. Guide book in hand - floppy cap to ward off the sun. Forward.

And here is the task: to determine which of God's creation belongs to which species. Which green growing thing is part of which set of other green growing things - and which is different. Lumping and splitting. Each unto its own kind. Dr. Rothrock is a world authority on one particular kind - a species of sedges (grass-like herbs) called the Carex species. But the good man has an infectious love for all things living (especially living things that photosyntesize).

An amazing article from the New York Times recently mused on the art and science of taxonomy. What spurred me was what anthropologists have discovered about ethno-taxonomy. Unsurprisingly, every culture names things. Surprisingly most come up with the same broad categories for living things - mammals, birds, snakes, fish, 'wugs' (worms and insects), trees, bushes, vines, and herbs.

OK, it makes sense that most groups will classify snakes as different from trees. But, how do you define a tree from a bush? Each culture seems to know that fuzzy logic of splitting the two into separate categories. Further almost all groups use two-name words to classify. The Himalayan oaks growing outside my parents house in Mussoorie are called banj oak, tilonj oak etc. And most local languages follow the same pattern.

Sheba has been reading through the Madeline L'Engle series which starts with A Wrinkle in Time. She tells me that the forces of good are called the 'namers' - and the ones of evil the 'unamers'. The reason is that we name the things we love. Naming means knowing. We cannot know if we do not have some love.

The Bible tells us that every star has a name. Our astronomers assign numbers to them - because of the colossal number of cosmic objects - the words of our language are not sufficient to name all the heavenly bodies.

The Bible also tells us that we are called by name. We name things that we love. The names we give our children are bursting with meaning. Expressing hopes for the future. Saluting and celebrating the past. Bringing new identity to our child who will be bearing the moniker that we as parents have assigned to them for life.

Our names also change with time. We shorten - twist - invent. My mother was saddened the day that I announced to her that from now on I would be known as 'Andi' - written with an i to differentiate from other 'Andys'. I was all of 12 and tired of having to coach people in pronouncing "An-dre-as" - and also ready to move on from being called 'undress'. It took my mother sometime to make the shift - but she lovingly accepted my modification of the name she gave.

But back to taxonomy. Our names and the names we give things are part of who we are as humans. We are namers, organisers, systematizers. We love to see the underlying unity and understandibility of things. The Biblical account talks about God bringing the animals to Adam and he giving them names. God lovingly delegating the opportunity to understand and name the varieties of creation. That work and joy continues today. BBC news recently reported the discovery of a kind of worm deep in the ocean that discards small phosphorescent parts of its bodies ('bombs') and swims inticrately using fine feathery appendiges.

What a privilege to know and be known.