Thursday, 27 March 2014

Steel frame

What has two back bones and thousands of ribs?


This 'old chestnut' of a riddle has a simple solution: a railway track.

I am writing this on board the Maharashtra Sankranti Express.   My destination is Delhi - where my friend Danny and I are due for a board meeting tomorrow.  We are travelling through ripening wheat fields in rural western UP, having passed the holy city of Mathura.  Our travelling companions are a father with his teenaged son, both watching a movie on a laptop and sharing a set of ear-buds, a man who seems to be a contracter of some sort - on his way to Kashmir, a young woman computer engineer - on her way to an interview, another man with a copy of Popular Science (borrowed by yours truly of course) and an India Today with Narendra Modi on the cover - and 3 commandoes on their way back to Delhi after doing VIP security in Mumbai for some pretty well known folks.


I was talking to one of them.  A man my age - from a farming community in Hariyana.  He has travelled the country and sees his wife and children a month out of the year.  The train had stopped for a long time at a signal so we got down for a stretch.  He looked at he fields near-by and pointed out the fields which were ready for harvest - and which fields needed 2 more weeks of clear skies to reach their potential.  I told him about the work we do - and how medications for HIV are making a huge difference in people's lives - but that pills will never cure hearts.  He nodded, saying that at the armed forces medical centres in Delhi there were a number of service-men who had HIV.

And so we roll on.  Phone calls are coming in now and my fellow passengers are telling family members and business colleagues about when they hope to arrive.  Our train seems about an hour late - but we are clipping along at a wonderful pace, the steady rumble of the aircon is matched by a low vibration and the muffled sound of our coach clicking over rails at a fine speed.  Electricity posts nip by outside at a regular rate as the flat disc of rurality becomes punctuated with odd hamlet and criss-crossed by power lines snaking away to the horizon.  Now we segue through a cluster of buildings, then we barrel past a rail crossing.  

If we went up and looked down at us, we would be a small metal worm, making its way up north along the main rail corridor between Mumbai and Delhi.  Look further behind us and you will see another such worm, also making its way north.  Look ahead of us and there is another.  A set of worms moving ahead at safe intervals between each other.  And look across the nation and you see hundreds of trains taking thousands and thousands of people across the land.  

This is the steel frame on which our country moves.  With all the advances on road, and all the metal birds that fly through the sky - its our rail that is still the medium on which India moves.
While waiting for the train in Borivali I over heard a young couple asking people when the train to Ahmedabad would come.  There was something in the way the young woman asked it that marked her out as a person who had not done much train travel before.  But there she and the young man (brother? lover?) she was with were on the platform - waiting to be taken away.

...

And so it goes.  I have since arrived hale and hearty in Delhi.  After seeing a wild hare in a rural part, and the inevitable shacks and garbage that announce the onset of a city, we ended up at Nizamuddin Station in Delhi, a mere 5 minutes behind time.

Across the darkness of the night other trains are leaving from stations, ploughing through the night, halting at signals.  Their human cargoes living out another strand of life - woven together for a season - as their steel caterpillars whisk them onwards, onwards.
Meanwhile, I am about to book tickets for 2 months from tonight - when we as a family should be leaving New Delhi station for Dehra Dun on the 11.45 PM AC Express.   Bharaitya Rel - jai ho!

Monday, 24 March 2014

Stock out

Stock out

Two words that don't mean much to most of us.

Because most of us do not have to take medication each day to keep our resident HIV at bay - and let our immune system still function close to how God intended it to be.

Taking the medications has its own challenges.  The sobering truth is that unless the meds are taken at a 95% adherence level the chances of viral resistance are high.  This means that you could 'afford' to miss 3 doses a month if you are taking the pills twice a day.  Across the world - in both 'rich' and 'poor' countries - adherence rates for long-term medications are a sobering 50-80% on average.  

Unsurprisingly, we know that most of our Positive Friends who are taking the medicines long-term face similar challenges.  A lot of our work with JSK right now is focused on helping them take their medications regularly.  We aim at 100% - and so if a person does miss the odd pill in the month it will still work.   Our real challenge are our friends who have a pattern of being irregular with their meds.

But now we have a new challenge.  And its a very serious one.

A number of our long-term HIV Positive Friends are at a point where their virus has become resistant to the basic Anti-Retroviral Therapy (ART) drugs.  The government, which gives the ART free, also provides free 'second-line' ART medications.  But since these are far more expensive, these drugs are only given at a few select centres.  In Mumbai the main govt. centre for second-line ART is at the JJ Hospital in Byculla.  It has in the past been hard to 'get on' the second-line therapy - but most of those who have needed it have received it.  The problem for them has been the long travel to the JJ hospital in south Mumbai once a month to get their monthly-supply.

Over the past few months we have had disturbing stories.

The stocks of 2nd line medications are low.  So instead of giving a month's worth of medications - those who need these life-saving meds are given just 10 days' worth and told to come back.   That means 3 visits a month.  

And it gets worse.  We have some of our Positive Friends who were only given 4 days worth and told to come back.  And that too - the medications are given loose.  One of our long-term patients came to our Jeevan Sahara Kendra clinic with this:


He is showing 4 days of second-line medications - which he was given in an old box of a 'first-line' medication.  

Now we all know that once you start giving drugs loose the immediate question about quality comes to mind.  And if a patient doubts the quality of her medications - then their efficacy will suffer.

And then there is the issue of going every 4 days to get medications.  Who has the luxury of doing a Mumbai Darshan every week?   We know of Positive People losing their jobs because of their frequent absences to get medications.  We have people coming from outside the city to get their meds too.

The Mumbai AIDS Forum has been taking up this issue and held a rally last month to protest these shortages.

The press covered the story and the officials said that the issue will be taken care of 'at the earliest' - but the damage is being done.

When drugs are not there - it is inevitable that adherence rates will drop.

And after the 'second-line' medications stop working...  then what?

A basic fact of HIV drug treatment is that once a drug stops working, you have to replace it with a completely different kind of drug.  You cannot just amp up the dosage (like some of the diabetes drugs) and hope for a better outcome.   Each new set of meds is a quantum more expensive - and usually more side-effects to boot.

So here is the grist of it - People living with HIV need to have their medications.  It needs to be free and life-long.   We have to see that they get the support and encouragement to take the pills daily - without fail - in order for the effectiveness of the meds to keep their resident HIV at bay.

But in order to do so, they need the drugs.  And they need access to the meds in such a way that they don't lose their jobs because of repeated visits a month to the government centres.  That they don't lose their health because of the strain of long travel.  That they don't lose their adherence because of the challenge of even getting the meds regularly, let alone taking them on time.

We are glad that our National AIDS Control Organisation is providing ART medications free - even the second-line ART drugs.  But we know for a fact that the situation in Mumbai is clearly one where the system has to improve.

Besides the issues of logistics which clearly need to be sorted out - how about letting Jeevan Sahara Kendra partner in providing the medications at our centre here in Thane?

Your thoughts and prayers on this are most appreciated.

Saturday, 22 March 2014

Happy Days

A month can seem an eternity.  A month can be the blink of an eye.

Enoch is already a month past his 11th birthday.   His cake made it onto the blog - but the rest of our celebration with him did not.  As did many other things.

Suffice it to say - there is much of our lives that does not show up here - but then that's how it should be isn't it?  It would be pretty creepy if every single part of our lives were documented and sliced and diced and served up for public consumption.

So if we rewind (remember doing that with cassette tapes?  esp. using a pen?)

Enoch, shares his Feb 19th birthday with none other than the great Maratha king Shivaji himself.    This means that our mornings are a little less hectic as the kids don't have to be at school at their usual 6.50 AM.

After getting the household together we had a time of prayer with Enoch - with Appa praying for his first grandson who had been born 11 years ago on that day.  It was especially appropriate as Amma and Appa had come to be with us at that time.

Then it was time for gifts.  In good Eicher tradition - we had hidden them around the room.  And so Asha and Enoch went on a treasure hunt.  And found a number of goodies for Enoch (with the odd one for Asha too).

On some years the kids get something 'big.'

This was one such year for Enoch.

After everything had been opened, we told him that there was something else which was 'hiding in plain sight.'

We had slipped a new key onto our key holder - and asked Enoch if he could identify the new key.  He did and we had him open the front door - and bring in what was 'parked' outside, waiting to be seen:



Later in the day, Enoch's friends came over for a birthday party.

We had a football theme going - starting out with a game of 'straw blowing' football in a small lego football pitch that Enoch had made.

And then of course there was the cake.



Now past experience has told us that some kids come who are strict vegetarians - so this year we had an alternative for them too - we decorated some eggless muffins for them as an ersatz cake.


 We are so happy for Enoch to have friends - and pray that this year he will be an even better friend to them in every way.

Drumil - whose sister is in Asha's year - had to go early.   I was wondering why he showed up so very punctually at even before the party's 'starting time.  Like so many others, Drumil has tuition classes to attend - and a reminder call came to our place to get him out the door.

And then there were Enoch's friends Nikita and Jasper - who weren't able to come on the big day...

... so they helped Enoch extend his birthday to the weekend when the showed up - parents in tow - and decked Enoch in a Barca kit - and made him a lego football card to boot (punintended)!

What a kick to see a card like this!


Enoch looks a bit like he is being drafted himself into the dream team.

How lovely to have an extended family to be with us on these happy days - both through direct parentage - as well as those like John and Nalini Gabriel (Nikita and Jasper's parents) who have been such a joy over the years!



With so much fun you would imagine that we would put off the birthday thing for another year and declare a moratorium on B-day festivities for at least a few months to allow us to catch our breath again given Asha being a Jan-baby and Enoch showing up in February.

But the happy days continued!

As a family we were so blessed to have Appa and Amma with us for a month.

Appa and Amma had been with Sheba's older sister Daisy and Ramesh and their kids Frankie and Shofar for half a year.  They flew in to Chennai and spent another 3 weeks with Peter and Yashmeet and Anmol before coming here on February 6th.  They were thus able to celebrate Enoch's birthday with us....

... and we were able to celebrate Appa's 76th birthday with them on March the 2nd!

No, we did not light 76 candles for Appa - we had them in a '7' and a '6' on top of his cake.

Before we were married - when we were just starting the process of praying about what God wanted of us - Appa suffered a terrible heart-attack.

Sheba said that it was the kind that usually had a 5 year life-expectancy after suffering such an attack.

Appa is very good with his medicines - and we pray daily for him as well.  And it has now been 15 years since that attack.

How grateful we are to the Lord for His gift of such a good father to Sheba.

Each additional year added to our lives is an absolute gift.

We really do not know where the next steps of any of us are - but are glad when we look back and see God's wonderful faithfulness in so many ways.

For Appa - God has protected him and guided him even before Appa acknowledged who God was.  In his youth Appa had been part of a 'rationalistic' political party among other things - and all along God continued to draw him nearer and nearer to him.

It was very appropriate that Appa's birthday was on a Sunday - the Lord's day.  After our family celebration - we continued to celebrate with our family of faith.  Being the first Sunday of the month, both our house-fellowships met at Rolly's home for worship, breaking bread, teaching and sharing, and then we had a meal together.  Asha is able to play by ear and so even our small fellowship's singing (which is not always the most harmonious) is sweetend by that heavenly instrument.







 Later in the evening, Appa was able to share at the Gospel meeting we hold at the centre every Sunday evening.  It was good that on his physical birthday Appa was also able to share the story of his spiritual birthday in Rourkela, Odisha more than 40 years ago!


As we wind down March 2014 - we just have to say how glad we have been for these happy days.  They days of celebration because of God's great love and kindness to us individually and to us as a family.

May we (and you too gentle reader!) experience many more happy days in the days to come!









Thursday, 20 March 2014

Underground

We have some pretty exciting things that may bear fruit in the next few weeks at Jeevan Sahara Kendra.

My lips are sealed - at this point at least.  Do stay tuned!

But whatever the developments may be - one thing is sure:  HIV as we know it has not gone away. 

Though it has dropped off the funding priorities of most international agencies, and though the press has a 'ho-hum' approach to the whole matter - we are still seeing lives that have been devastated by the disease in various ways.

Let me count some of them:

1.  A man who has worked in the gulf - amassing a small fortune for his family - is now alone in a room in his appartment.  He has HIV and has hardly any CD4 cells left (his last count was only 8 per cubic cm - a healthy person has between 900-1200 or so).  But more than the sickness - he is starved for love as his wife and three daughters want very little to do with him.  And so he is alone in his room.

2.  Another man is under psychiatric care in a large hospital.  He had not been doing well on his medication and went to a 'prophetess' - a young girl who told him to throw away his medicines and believe that God would heal him.   Needless to say, the hoped-for-healing remained just that.   When he started back on his meds, his mind started to unhinge.   His wife is now with him in the hospital - trying to stabilize him.

3.  A woman recently found out that she was HIV positive when she started falling sick.  Her husband had died many years ago - but she did not think she had it.  Now she knows she does.

4.  A man called up asking for help as his mother needs further hospitalisation.  She is at a place where most of their money has been spent on the treatment and she is not getting better.

5.  A young man was just about to go to the gulf.  The routine medical check-up found out something that neither he nor his family expected.  He is HIV positive.  They are floored and wondering what to do for his future - and what to do with their shattered dreams.

6.  A man called me up today worried because he may have HIV.  He told me that he had a sexual contact a month ago and had been using two condoms and wanted to know whether he may have the disease.   It was surreal for me to be talking to him - not knowing where he was calling from.   Last month I talked to a man who was on a ship off the coast of Nigeria.

7.  Our team did two testing camps along with organisations who reach out to women in prostitution (yes I am using the old-fashioned word).   Sadly of 8 the 29 women tested were HIV positive.  This is 28% - much higher than the 6% figure that the government has for women who sell sex in India.

8.  A young teenage girl found out last year that she was also HIV positive.  Her alcoholic father has not been taking his medicines regularly - preferring to self-medicate with his bottle.  The girl has manifested a variety of abnormal behaviour - though the last few weeks have seen her come back to some kind of normalcy.

9.  A veteran HIV activist came to the clinic today - she is on 'second-line' therapy from the government - but the main Government site in Mumbai where these medicines are given to people with HIV who are not responding to the basic meds anymore have been in severe medication shortages over the last 3 months.  So the 'answer' is to give patients only 4-10 days of medications - and then have them come back again.  It is hard enough to go all the way there once a month - now they have to do so multiple times - taking leave - missing work and family responsibilities.  But most cannot buy the medications on their own because of the high cost.

10.  A little boy comes everyday with his mother to our JSK clinic.  He is 11 years old - but looks like he is 6.  He comes because he has multi-drug TB along with his HIV.  We are giving him medications every day for his 2 year course of MDRTB meds, which our friends from Mediecines Sans Frontieres have alloted for this boy.  His father is unstable, so it is the mother who bravely brings this little boy every day for his treatment.

And so the stories go on. 

Every person precious. 

Often in situations that defy a simple solution.

Where are all the people that I have mentioned above?

Well, they are all around us.    But hidden - because of the stigma that is still spiralled around the disease. 

And because of something else - I think that in India we have now moved from the scare-mongering days of the early 1990s (HIV is everywhere - we will soon overtake Africa etc) to a point today where we have slipped into some kind of underground of apathy tinged with the same-old-same-old fear and loathing of the disease.   "Another topic please?  This one is too morbid for me"

There is clearly still work to be done.  We at Jeevan Sahara Kendra are part of it - and will remain part of it for the foreseeable future it seems.

So we press on.

With God's help change is possible. 

Every single person affected by this disease, every family that is going through the wringer, every seemingly impossible situation (and there are so many of them) - each one is also an opportunity for grace.  And mercy.  And change.

Wednesday, 19 March 2014

Building a wonder


Over the last week we have started building one of the modern wonders of the world - the one and only Taj Mahal. 

O.K. - it's the lego version of the Taj - but for us it is still a wonder.  And while it will not take (hopefully) the 21 years the original took to construct, we realise that the 5922 pieces in this amazing kit are not assembling themselves on their own.

So Enoch and his Daddy are hard at work play - with occasional inputs from the ladies of the house.

Here is Enoch putting the very first pieces together. 

A series of eight interlocking portions that form the base of this beautiful structure.

Needless to say, with so many pieces, just finding the right ones is half the fun of it.

Till now we have found almost all the pieces - with a few having to be substituted by our existing lego hoard.

Asha has lent the odd helping hand - and has one of the minarets to her credit.

Sheba is slightly bemused by the building fever that has gripped us.  We are trying to parcel it out in reasonable pieces of time (though Sunday night did see me scratching away on my own for a fair bit well after everyone else was asleep).
 
And so here is the progress as of this evening.

The base is complete, the minarets are up.

And the bottom of the main dome is being made.  A lot more to come, and many more hours of constructing this three dimensional puzzle await us....


Tuesday, 18 March 2014

Fire

We were driving the 'Papaya' (our orange Nano car) on a crisp clear Sunday morning to the home where we meet for worship when we saw a fire engine go by in the opposite direction.   "Must have been something" we mused.  Turning the corner just before the home we meet in, we saw another fire engine and some police vehicles.  Everything seemed quiet, so we carried on and climbed the three flights of steps to the beautiful home of Jolly and Suma where we meet each Sunday morning.

They told us that their morning anything but quiet.

The family had awoken to screams and saw smoke coming out of a near-by building.  Flames of fire could be seen and the fire engines rushed to try and help.

Sadly we understand that two elderly people were charred to death in the blaze.  There were a number of fire-engines who responded, but the fire-fighters ladders apparently only reached up to about the 10th floor.

So a couple had save themselves by standing outside on the parapet of their 12th story home - till the fire inside could be controlled.  They suffered severe burns but were rescued eventually.

Our friends told us how horrible it was to see the whole scene unfold before their eyes and feel so helpless as the people were stranded on the very edge, and the ladders were just not able to reach them.

Makes you think...

How close any of us are to disaster.

Would anyone in that upscale building ever think that the next morning a tragedy would happen in their own 'safe and secure' building?  Would anyone imagine that the best fire equipment would only reach the 10th floor?  What about the many 27 story high-rises that are mushrooming up around our city?

How brief our candle burns.

Are we ready for tomorrow?  Have we set things in order?

Are their people we need to ask forgiveness of?  Are their others who we refuse to forgive, holding onto our bitterness?

Are we right with God?  Looking forward to meeting Him?

The silhouette in the photo below could be you, or me... standing on the edge while the flames leap up blocking our way out...

Dear and gentle reader,

Please do not delay.  Listen to what the Lord has told you.  Don't put off till tomorrow what must be done today.

I include myself in this challenge.  There are many areas of my life that I would say are still undone, were a fire to sweep through and burn everything up.

Help me Lord, to live as you wish me to.

 It is not by accident that the topic I share on that Sunday morning was the marvelous work of God on the day of Pentecost - 50 days after Christ rose from the dead.

All those praying and waiting on God heard the noise like a mighty wind (though no hurricane took the roof off the upper room), and saw fire come down and divide into what looked like individual flames and rest on each person present.  And all were filled with the Holy Spirit.

The fire of God's presence - the purifying, awe-some, powerful force of God Himself, was now not devouring the 'new and living sacrifices', but filling them - and by extension all who call on His name - with His very presence and character.

As we cried out to God on behalf of the bereaved family from the near-by apartment building, and as we sought His favour and comfort for the man and woman who were injured by the fire, we also as a church sought God's altogether difference fire to fall on us afresh.  The power of fire and the destruction a stark reminder of why God chose fire as a way of revealing Himself to us.  But also the new way of living that we now have knowing that a different kind of fire has come upon His new body, us who call on the name of Jesus and are brought into the new family of the Church.

--------------------------------
photos courtesy of Jolly, Suma and Reneta Thomas

Sunday, 16 March 2014

Under construction

We got a fabulous gift from the Vethanayagam family today.  5922 bricks.  And 3 books worth of instructions.  Enoch calculated the number by adding up the tally of each kind of brick as noted in the third book.

We spread them out on the floor into different heaps of colours like so:


Our fingers are sore from pulling apart the pieces.

But now the fun begins.  Putting each one of the 5922 pieces into place.  Note that the largest number of the pieces are white.

And what pray, may this all be?

What will rise in the Eicher household?

Well, nothing less than a Lego replica of the great monument to love that we have in Agra....

Let the building begin!