Dealing with Discouragement

We all love to hear happy stories. Especially when a person has been terribly ill and is now so much better.

Its heart-breaking when that person relapses back to their previous situation. Mr. Bali, for example. We first met him when he was at death's door. A long-term alcoholic, he lived in a shack 50 meters from our clinic. He was HIV positive and dying from TB.

Our JSK team got him started on TB treatment, nursed him back to health, fed him, talked and prayed with him. And amazingly he pulled through. He stopped drinking. Started walking. Got a job as a security guard. Things were rosy.

They are not anymore. Mr. Bali is back to the bottle. Our staff try to meet him, but he is nowhere to be found. When they do find him, they can hardly talk to him as he is in a drunken stupor.

He is still walking, but how long?

Our staff feel like they have been kicked in the gut. No happy, happy tales at this point. But they continue to try and meet Mr. Bali. We continue to pray that somehow he will listen to the still small voice to God speaking to him. We keep trying to reach out to Mr. Bali - with the hope that he will listen.

Listen and not drown out the voice with another plastic packet of country liquor.

Listen and act, making real steps forward into hope. Again.

Pilgrimage

Its 11.15 PM. The walls of our house are empty. There are cardboard boxes in every room. Some empty. Some full and taped shut and marked with black sketch pen.

We want to know what is where - and will soon be trying to figure out how to fit everything in at a new place.

The Eichers are moving again. It seems barely possible that we would do so. To leave our own home and take up a rented flat. With the hope that we will find people to rent ours.


The reason for our shifting?

Ever since we started work at the Jeevan Sahara Kendra Community Care Center at the Lok Hospital building - we have found our closely choreographed days slowly unraveling.

Asha now starts school at 7.15 AM in the morning - which means she needs to be down at the bus stop at 6.30 AM. Enoch still has afternoon school - so he goes at 12.40 PM. Asha returns at 1.30 PM and Enoch comes back at 6.40 PM. One of us has to be home when our kids are. And so the dance has become stretched and wonky.

Plus this - with the new phase of our work, we are going to be dealing with new HIV positive people who will present to us in a very sick condition - since they are coming to the JSK CCC for admission for complex (and usually grossly untreated) conditions. Sheba already had a night call last week - where she arrived at 8 PM only to find that the poor man had expired already.
With no other doctor in sight - we expect a lot more of this in the time to come.

And so the rather sudden decision to pull up and move. We are shifting from our Happy Valley flat over to an apartment at Lok Upvan Phase 1. We will be a 1 minute walk away from the Lok Hospital building. The children will be 5 mins walk from their school (though I think their Daddy will be dropping them off alot on the scooter).

And so every night over this week we have been packing. Putting things away. Decided on what to keep - what to give - and what to bin. It is good to do this. We sequester so much stuff away. Time to carve out the fat (though most seems to be disappearing into the boxes to be hauled off to the new place...).

In the mean time our new place is getting a painting and cleaning up. The process is (as usual) painfully slow. We go over everyday to see to the workman (yes it is one guy with the occasional side-kick) is doing.

Today we said the classic lines: "You want to move in by Saturday?" As if he had never heard of such an idea. As if we had not been telling him this since he told us 'one weeks time' 10 days ago.

Its only been 2 weeks since we made the decision to shift. And it looks like in 2 days we will (at least we hope to).

There is still more packing and paper work awaiting me before the midnight hour strikes.

Our latest leg of this raggedly grand pilgrimage that we are on together as a family unfolds.

Onwards ever. Backwards never. Or at least not most of the time.

Prayers always accepted on behalf of the Eichers. Strong backs and willing arms welcome on Saturday afternoon too (D.v.).

Not again.

The SMS beeped on my phone at 8.19 PM last night.

I was washing dishes.

The SMS was from a friend telling me he would not be able to come to our home for the regular Wed. nite men's prayer meeting

"Bro i cant come today here very tight traffic bcoz of blast"

Because of blast?

A minute later I called up Jolly (one of our elders).

Yes. 3 bombs went off in Mumbai. 20 dead so far. Many injured. Rush hour. Crowded market places.

I felt sick. The whole day the rain had been pouring down. Things were pretty grey. And now this.

Sheba was with the kids. What to tell. Another blast. Should I wait till the kids sleep? But they will find out anyway. In I go. Tell the news. Another blast.

The BBC website tells us that 21 are dead - so far - and over 100 injured. Over the next few days their stories will drip in. Some will die. Some will be maimed. Some will fade away. More numbers to the cruelty of the human heart.

What a world Asha and Enoch are growing up in. One where parcels are to be feared. Where the news flashes and then people pick up their phones to check if everyone is accounted for and ok.

How long till I know someone personally who has died in a blast? Pakistan has seen over 30,000 people killed by fellow Pakistanis over the past decade. We are not as high in this sorry contest - but the drip drip drip of killing continues.

We were three of us who met for prayer last night. Three men praying from 9.30 to 10.30 as we do every Wed. night. Three men calling out to God as the rain pounded down in the darkness outside.

Come Lord Jesus and set things right. Come Judge and King and Restorer. We need you more than ever. The brutality of yesterday tells us this again and again.

Happy Birthday Neptune!

I was thrilled to discover that the planet Neptune was discovered a year ago tomorrow.

Yes you heard it right. Neptune was discovered only a year ago. And July 12, 2011 celebrates this great occasion.

Not an earth year mind you.

A neptunian year.

A mere 164.79 earth years.

The last time Neptune was where it is tomorrow in its spin around the sun - astronomers from our dear planet spotted it. The planet had been discovered!

The trusty BBC website breathlessly reports that Neptune was the first planet to be discovered intentionally. The planet Uranus' orbit (found in the late 1790s) didn't fit with Newtonian calculations... prompting a bright spark to postulate that there was another as-yet-undiscovered heavenly body that was the case for Uranus' strange orbit.

Right on the money!

The boffins calculated - and predicted it would be found in a certain part of the sky. Armed with the coordinates the astronomers looked - and after only an hour of searching on the 24th of September 1846 - they saw the new planet!

Happy Birthday Neptune! I am so glad mathematics works! Here's to the deductive approach!

Hooray for the wonders of space! But please do shed a tear as the space shuttle glides into history - after spending billions and twice providing terrible disasters... (the flip side of our confidence in deduction).

We have so much more to discover...

The Railway Children

Since we came back from Mussoorie in June - I have found myself in a land where I have gone too little in the last decade.

The land of books.

There are just so many great ones to read.

Old classics. New voyages. The joy of cracking a book open and letting the text swim into my mind. The desire to keep going. The wonder at seeing the clock having spun around while I was in another place, another time...

I hope to share some of these journeys. So lets start with a delight. I had never heard of E. Nesbit. We were in a bookstore (one of those places which has sadly seen too few footfalls from us over the last decade) and I saw this book.

The cover hooked me. We bought it.

What a wise and wonderful tale it is. The three children and their world opened up. We laughed and smiled, shed the odd tear and lived along with the family as they grew together in the absence of their father. As the main reader I could not help but find my voice thickening a number of times - triggering memories of my own father reading to us as kids.

While the story has plenty of adventurous incidents to take you along - what Nesbit does so well is to build up the world of friendships that the children manage to create. Someone said that fiction allows us to see the truth that reality hides. This book rings true. The freshness of the children. The challenges that they and their mother cross. The child-level vision that Nesbit captures - while seeping the book with a deeper (and at times sadder) wisdom. The sprinkled incidences of Providence. The quiet commentary on class. The gentleness of love and devotion - and the dawning of understanding in a child. Its all there and more. Read it.

I wish I had read this a long time ago. But am glad that Asha and Enoch gave us an opportunity to go into this world together.

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Interestingly E. Nesbit and her husband were founders of the Fabian Society and involved in British Socialism at the turn of the century. Most of her books are available as free ebooks and audiobooks.

Here is a quote by Nesbit: “When I was a little child I used to pray fervently, tearfully, that when I should be grown up I might never forget what I thought and felt and suffered then.” (from an essay on Nesbit by Gore Vidal). We are glad that she didn't. It has made us the richer

24 hours

Its been a tough 24 hours.

For the first 2 weeks after our shifting the Jeevan Sahara work to the new premises, we did not have a single in-patient.

Then this Monday we had our first inpatient. Leelamma.

On Tuesday our second patient came. Nelson.

He is one of our contacts in the home-based care team. Nelson is a very complex man. A long-term alcoholic - he has suffered a stroke which has left him paralysed on one half of his body. He has lost the power of speech and communicates through grunts. It is hell at home. He continues to drink and flails around - beating his wife and mother. His mother, a tiny waif of a woman has been supporting him so far. His wife comes and goes.

We admitted Nelson in one of the rooms.

Yesterday we found out a terrible fact. His good leg is blue. It looks like a clot has moved down into his leg and is cutting off the blood supply. An emergency surgery could help - but Nelson's wild and erratic behaviour means that an post-op care is almost impossible. We talked to his wife and mother. There is no one to go with him. They want to take him home.
Then last night a man came.

He was brought to the center at 8 PM. We got a call saying that a very very sick person has come for admission. We live 2 kms away from the Jeevan Sahara Community Care Centre. Sheba left immediately, but by the time Sheba arrived at hospital the man had already passed away.

Lets give the man a name. We will call him Yashwant. Our staff had met Yashwant earlier when he had been admitted to the civil hospital. Like Nelson, he had only an aging mother with him to look after him then. When he came to JSK at 8 at night it was only with his mother again.

After he died, however, many relatives appeared. Where were they when Yashwant was alive?

The lot of a person with HIV can be very lonely. And most of the loneliness is due to purposeful neglect. Shame by other family members. Weariness from caring and giving money. Coldness due to past wrongs done and bridges burned. Fear of the disease and the stigma that surrounds it.

Each person so complicated. What we are finding is that the Community Care Centre is putting us in touch with people who have had extreme experiences. Though we have just started this phase of our work, I think it has already begun to take its toll on us.

At 11 AM noon today, Sheba was about to go over to the centre when she had a severe pain in her lower abdomen. She could not stand. We had to put her into bed. Sheba has remained in dull pain for most of the day - and sharp pain when she stands. She has dropped off to sleep now.

In the meantime - in the early afternoon - an HIV positive boy came to the JSK Centre with a 104 degree fever and shallow breathing. With Sheba unable to come, Agnes our main nurse called Dr. Marise who helps out 2 days a week. Marise came over, and the boy was stabilised. Our staff was about to discharge him home in the late afternoon - without having to be admitted.

Nelson's family took him home this afternoon too. How long he lives is a hard question. How his family is to look after him with his violence and anger is another. We don't have any simple answers - but that is why we are here. To serve. To show the love that God through Jesus gave to us in the first place - undeserving, wild, ungrateful, incoherent us!

Its 23.18 as I type this and another day starts at 5 AM tomorrow.

Onwards!

Missing

I have written a number of times about 'seeing' people with HIV. I see people with HIV who are invisible to others because people with HIV have no outward sign that they are living with the virus. They blend in with the crowd. We meet them when we buy fish from them, when they sell us a train ticket, when they drive a bus, when they sell and insurance policy or get us a PAN card, when they run a chemist shop, when they serve in the police (just a few of the professions that our positive friends are actively - and completely safely pursuing in Thane).

These people are visible to me, because I have seen them in our JSK centre. I know their CD4 counts. We have prayed with them and are so proud to see them living normal productive lives.

But today I want to write about the missing.

HIV still has a massive, crushing stigma attatched to it. For every person who is brave enough to come to JSK to receive help, who is open to our staff's discreet health visits to their homes - there are plenty of others who have resisted our coming to meet them. They are afraid. And they have reason to be. People have lost jobs, people have been turned out of rental homes, people have been ostracised when others found out that they have HIV.

Some of our friends have told us upfront that they do not want us to come to their homes. We reluctantly agree.

Most of the time they say that 'they will come when they need help.' Very few do.

I have been thinking about this because I have been missing one woman. We will call her Tanvi. Tanvi came to us through her brother who was a rickshaw driver. Her brother had been given a small card about JSK and he knew that Tanvi's husband Babu was very sick with AIDS. He brought Babu to us and we looked after him.

Initially Babu repsonded well. He was able to start work again. Then we got quite ill. We admitted him at our clinic. When he did not respond immediately, Babu's brother came.

'I will take care of him at the govt. hospital! I know people there. You are not doing anything here. I will make Babu well in 3 days.' was what Babu's brother angiliy told us.

Babu never recovered.

We tried to keep meeting Tanvi. Our staff met her regularly at her home. She buried herself in work. As she did not have children, her days were empty. She filled every available hour with work. Tanvi cleaned houses. Now she started leaving at 7 AM and coming back after 8 PM.

The told our staff to stop meeting her at her in-laws home. She would seek them out when she needed them.

I used to see her at our building complex. She cleaned some of the homes there. When I would pick up our children from the school bus - or be waiting to drop them off I would see Tanvi walk by. She normally would give a small greeting and walk on.

But now she is missing.

We have not seen her for almost a year.

Where is she?

Has she gone back to her village? Unlikely. She would have done so immediately after her husband's death. But we know that Tanvi stayed on for some time.

Has she got more jobs in other housing complexes? Perhaps - but again unlikely. Even if she is working in other homes - one of us will run into her on one of these days.

Is she dead?

Sadly, this is the most likely possibility. One of our last conversations was that she had TB again. Tanvi said she was taking meds from the local health authorities. I told her to come to the JSK clinic and see Dr. Sheba. Tanvi said she would. She did not come.

Most of us don't believe we will ever die. Even if we have seen our loved one die.

Did Tanvi not believe we could help her because her husband died despite getting some level of care? Did Tanvi fear that others would find out about her status if she was seen coming to our centre? Did she commit suicide and end it all? Did she just discount her own HIV status - postponing treatment and care for later - and then come to a point where there was no later? Did she try to get treatments from the quacks - not believing the sober statements (which we try to tinge with hope as well) that she got from us at JSK? Was she angry with one of our staff?

Her disappearance gives us no answers.

I wish I would be proved spectacularly wrong by meeting a hale and hearty Tanvi one of these days.

I don't think I will.