How would you feel if your labour of 13 years was judged in 3 days and dismissed as inadequate and unworthy to be given a second chance? Not good I presume particularly if you have spent 13 years of your time to build it brick by brick from scratch. Sadly this is what happened to me, to us at pwhy a couple of days ago. I will not go into the details. I hold no bad feelings, I gave up those long ago. I simply hope against hope that this unfair dismissal will not cast a slur on the relentless effort of those who have put heart and soul in making pwhy what it is today. However, when such occurrences happen, I feel the need of taking a harsh and candid look at what we have achieved, to assess where we went wrong and could we have done things better. The recent incident made that more imperative than ever.

I feel particularly hurt as it seems that a lack of some creature comforts that could have been sorted out, reflect on the hard work of a wonderful team and the morrows of almost one thousand deprived children. These children depend on the generosity of donors the world over and the slightest slur can put an end to their hopes and smiles.

I chose to put a picture of the wonderful smiles of Umesh and Anurag who are two children of our special section and have been with us for many years. I browsed our old pictures and found these! How big they have grown and how happy they look today! I am not boasting but had we not been there I wonder what would have happened to them. For the past decade, these two lads and many of their companions have been coming to pwhy and every day and spending some hours laughing and learning, something that is the right of every child but is often denied to children with special needs. If just for that I think I can say we at least did something right. I still remember the cold morning when a lady dropped in to our office with four or five kids in tow, Umesh being one of them and asking us if we had a class for children with special needs as the one these children went to had suddenly shut its doors and moved to greener pastures. It did not take me a second to tell her that we did not but would start one.

And our first class for special children was on the

pavement. It was winter and a blissfully a sunny one, so the classes could be held out in the open. They shared their space with a bunch of class X boys who were busy preparing for their Boards. But come the heat and it became impossible for the special class to stay in the open. A quick switch was made and the English classes that were held in a small mud hut became their classroom. Soon primary classes were added and we taught every where and any where: a reclaimed park where we erected a lovely tent, in between buildings
when we were thrown out of the park, in a reclaimed garbage dump. Any space would do, as long as we could continue our work. From a handful of kids, we became hundreds and even touched a thousand! We fought every battle needed: the slum lords, the wily unions, the scheming politicos but survived each battle. We met every challenge thrown at us and found solutions: be it life saving surgeries, destitute women or unfair court cases. We did at times have to lick our wounds but they healed faster than we could imagine as they seemed paltry compared to the smiles that filled our lives.

Our kids have grown. The little girl leading the morning walk of our very first creche is now a stunning young lady in class VII. She studies in a public school as her family has understood the importance of education and has tightened their belt to give her the best education. One of our first students in class I has completed her schooling and is now a teacher at pwhy. A young boy who joined the classes we ran for a gypsy camp because of the young international volunteers who taught there. He completed his education, worked as a teacher with pwhy and is now an international ramp model!

There are so many heart warming stories that make up the 13 years of project why. All of them have been shared in the 1500 posts of this blog. We have also shared our errors, our lapses, our failures as candidly as possible.

Today when I stand at a crossroad, wondering whether it would be wiser to wind up this unwieldy project that has grown because I followed my heart at every single moment, or maybe scale it down by applying some hard logic leaving the heart aside, I just have to take a walk down memory lane to see how absurd the idea is.

I only wish people did not judge 13 years of work in 3 short days!

My very first encounter with the word ‘cancer’ was circa 1957. My grandmother was diagnosed with ‘cancer’. I was five. All I remember is mama’s silent tears as she read a letter that was delivered to her through the weekly diplomatic bag. We were in Rabat where my father was posted. In those times there were no dial up phones or internet. News from India came once a week in the ‘bag’. Sometimes later I was told my Nani had ‘cancer’. I did not know what ‘cancer’ was. I only knew it made my mama sad and sometimes made her cry. cancer was a bad word. That is what the little five year thought and went with her life. On July 13th 1958 a telegram arrived. Telegrams were often bearers of bad news. My Nani had died. ‘Died’ was also a bad word as it made mama cry and papa sad. She had died of cancer. Now the little girl was sure that ‘cancer’ was a very bad word! I did not know then that it would become my greatest enemy with many battles lost!

Life went on. Between postings across the globe, we always spent time in India in Meerut where my grandfather lived. For the little girl it was her Nana and Nani’s house but this time there was no Nani. She had died of cancer. I had memories of her, memories that still linger in my mind today and bring a smile on my face; memories of baths taken together, of mangoes eaten under the mango tree, of delicious food my Nani use to cook sitting on a charpoy under the same mango tree. As I grew up, my mama told me many stories about my Nani and I realised what a special woman she was.

The word cancer would reappear in my life as I grew up from child do adolescent. Mama had a lump, mama needed surgery and a biopsy. But then all would be well when the results came in. Cancer was always a fear that kept cropping in and out of our lives. But mercifully till 1989 it remained just that: a fear quickly allayed.

But things were to change forever. On a sunny afternoon in the summer of 1989 a phone call from my father changed my life forever. We were in Prague on a posting. My parents were in Paris and had promised to visit us. We were all excited at spending some time together in the city where I was born. The call was from papa. Mama had had an opacity in one of her lungs and had had what looked like a stroke as she seemed to have lost her recent memory. I rushed to Paris and was shocked to see a woman who in no way looked like my mama. She was lost in her own world and frightened like a child. In hindsight that was the day I lost my mother. The last year  of her life she had been hijacked by the opacity as we were not allowed to use the word ‘cancer’. I do not know whether it was instinct or vanity but mama never visited a doctor, never wanted any treatment, never agreed to pain management. She bore it all with rare dignity and great courage. She died in my arms living life to its very end.

It was hard on papa and I but we respected her decisions even though her hearts broke each time we saw her smile through the deep lines of a pain she tried to hide. I wish I had known about alternative therapies, about nutrition, about the many ways the beast could be fought. But we were greenhorns papa and I, and only knew about medical treatment that shred every ounce of dignity you had. We had ignored the beast as that was what mama wanted and he took her away.

As papa and I sat licking our wounds and missing her smile, the beast decided to strike again, this time it was papa. Had he somatized the ailment that snatched the love of his life. I do not know. What I know is that one fine morning papa complained of a bleed. It was the beast again, the one who had kept me in fear for half a century. This time we went for the medical ‘protocols’ that translated into a mutilating surgery that robbed my father of his dignity and will to live. It took just 29 days.

I was told that I was high risk, and that I needed to be checked every year. This was unacceptable to me. I would not live my life in fear of the beast but instead of trying to avoid it by nor naming it and letting it run wild, I would learn every thing about it. I read books and more books, survivor stories, alternative therapies, different options. I learnt about nutrition that could prevent it from attaching and put myself on a diet. I began to exercise, meditate, do yoga, gi quong. I had to take the bull by its horns and rid myself of the fear I had nursed far too long. I was ready for it should it attack.

But it had other plans. Surreptitious and insidious ones. It again attacked a loved one in the most unexpected manner. But what it does not know is that I am prepared. First of all I am going to give it a name of my own and address it directly. Zozo is what comes to my mind and Zozo it will be! So Zozo, you want a fight, you will get one and remember David conquered Goliath.

I do not know why you have been given an exalted status. People die of a myriad of illnesses but no one says a malaria survivor, a leprosy survivor or a dengue survivor. Death comes at a given time, and you are just the chosen bearer. Maybe you serve the interest of pharmaceutical businesses and commercialised health care. And too many fall into your trap. I to did once, but not anymore.

 I am ready for you in every which way possible. I will make informed decisions, I will use an arsenal you cannot even begin to imagine. I will chose each and every weapon I have mastered over the years. I will starve you giving you all the things you hate. I will hit you with targeted bullets of all shapes and sizes. I will not leave you a moment of peace. This is a battle where if needed David will die before allowing Goliath to win.

Let the battle begin!

Blissfully till now my trysts with the medical mafia were few, far away and second hand. They were oft recounted by people I knew and sometimes by my project why family for whom private – commercial – modern medicine is a sine qua non to social mobility. Just like for weddings they will be beg, borrow and steal to get their dear ones admitted to one of the top medical five star facilities. I feel appalled and angry when I see people paying tens of thousands of rupees for c

Just like public schools mushroomed a few years back, private hospitals, some obscenely grandiose, are proliferating at every corner of our city. They come as a counterpoint to the avalanche of private health insurance companies that promise the world and more. Somehow the whole symphony sounds extremely false and is the absolute opposite of the spirit of the Hippocratic Oath! You even have a modern version now! I think I am going to write a desi version sometimes in the near future.

I have never been one to plan life with logic and good sense. I am more the one who leaves everything in the hands of the one residing above and take life a day at a time. So I am not the one who took time reading the fine print of a loved one’s insurance cover. A simple query that was answered by a short: everything was enough to satisfy my fleeting need. I must confess that there are moments or rather issues that I deal with hubris.

Someone had other plans as my carefully crafted world got a blow that almost knocked me out. In spite of all my careful orchestrating I forget that life’s symphony is composed by another we have no hold on. I who had clamoured with misplaced confidence that I would never – never say never again- allow myself to be caught in the vortex of private and commercial healthcare suddenly found myself in the midst of it! The never read lines revealed their truth. The everything so easily accepted turned out to be a maze best typified as illogical. It turned out that the post and number of years toiled in a PSU entitled you to a double room. I wanted a single one. Naive as I am I thought that paying the difference would be sufficient! Not at all was what I was about to discover in a well staged and acted play.

Twenty years ago, when my father needed a surgery there were no super speciality hospitals. You either went to a state run one or chose a nursing home. I selected the later. I was given a price list with different items, one of them being rooms. I chose the best. The rest of the items were fixed! But that is not how it goes now. It is the room that defines the price of the rest of the items be it the OT charges or the nursing ones. I wanted a single room for many reasons and tried to dig my heals. I was sent from pillar to post as I kept asking why this could not be. I was met by a series of people whose nomenclatures seemed more appropriate in a corporate house than in a home of healing. I got the whole enchilada from the kind and polite PRO, to the less kind and polite god knows who; from the seemingly understanding secretary of the Doctor to the most supposedly humane Doc who sent me back to another set of people whose kindness and politeness differed. After having been swung from here to there I was ready for the kill: a meeting with the head of finances, Cerberus herself, devoid of kindness and politeness who barked at me that there was no way I could get that single room, and if I did want it my bill would grow at an exponential rate. And that any way there were no single rooms available. And anyway you are a book judged by its cover and I was not wearing the right shoes, carrying the right bag and dripping with the right jewels.

I came back licking my wounds and trying to rearrange my head in accepting that my poor partner will be subjected to the snores of another. Trying to come to terms with the fact that we would not be able to be with him as a family. So alternate plans were drafted and it was decided that we would admit him as late in the day as possible and get him out as soon as possible. I did not know then that the ‘protocol’ – a word with a whole new meaning for a diplomat’s daughter – was to keep a patient in ICU one whole night even if the surgery is minor. Actually in state run hospitals they would send you back in a few hours. We got our open heart surgery kids back in three days! But we are now in the realm of commercial health and the meter has to keep running for as long as possible. Makes me sick when I see the millions who cannot and do not get access to any form of humane treatment.

So as per plan we shipped the husband to the hospital late in the night! Imagine my surprise when I was told that he had been given a single room! Was it an answer to my entreaties or to my prayers. I do not know. But I feel a little better knowing I beat the system.

Popples a.k.a. Utpal left yesterday morning. It was heart wrenching as for the very first time after many comings and goings he was sobbing. Normally I got a Bye Maam’ji as he hopped into the car and most of the times did not look back. This time however there were tears an hour before leaving and then in the car. I was deprived of my hug and smile. I would have liked to see him go with a big smile as this is a time when my emotional bank needs to be filled to the brim as I am going through tough times and will need all  the support I can muster. A weeping child was not  what I wanted to see. It almost felt ominous and I quickly brushed the idea aside. I could not afford to go that way.

Later when I was a little calmer I tried to analyse young fellow’s behaviour and it all came to my in a flash. Utpal had spent the whole summer holidays at home and had a great time. But that was not all. I guess for the first time he felt part of the family, a new experience for this little lad whose life till recent times yo-yoed between sordid homes, midway rehab homes, boarding school, our women centre, and many others including mine. But this time he had savoured the comfort and security of a home though he is still battling with relationships, something we need to help him with. Agastya being there made the  departure harder as the last month had been filled with fun and laughter. I guess anyone would have cried his heart out. I could make peace with the tears that were far from being ominous were a sign that we were all hoping for.

Today I went to GK M Block market a favourite haunt of my two little fellows. The reason: the toy shops of course.  But I just needed to purchase some inane need. As I walked into the market I suddenly felt terribly alone. There was no one tagging along, no little hand in mine and no one calling me Nani or Maam’ji! No one dragging me to the ‘toy shop’ and no visit to the the famed toy shop(s) with demands fired at me from both end of the proverbial ‘gun’. Today I could go where I wanted, browse every shop in the market. Today I did not have to halt at the Pizza vendor and order three slices of pizza for my ever hungry big boy, or look for the missing ice cream vendor for my tiny vanilla ice cream lover. Yes I could do what I wanted except rewind the clock and savour one more of those delightful moments.

I miss you!

I was waiting for the rains
The dark clouds to gather
The skies to open
I waited and waited
Holding on to the tears I needed to shed
I wanted to take a long walk
Stomping in the rain
My face turned up to the sky
So that the tears would mingle with the raindrops
And no one would know I cried
But the clouds blew away
And the tears remained unshed
Choking my very soul
Crushing my spirit
Whilst the smile, the brave one, remained
Stuck to my face
Let us not forget
It is showtime

But how long would the tears
Remain unshed
I knew they would swell
Into a torrent
And come gushing out
Ruining the carefully scripted play
And revealing to one and all
The agony I am so painfully trying to hide

I could not wait for the rain Gods
I needed to find another outlet
To mask the tears I so needed to shed

Blissfully I found the way
The daily walk on the treadmill
And the humidity soaked air
Would provide the domino
I so desperately sought
All it would need was a little extra push
Of the ageing body
Would bring the sweat that would hide the tears

So every morning
For the time it takes to complete four kilometers
The tears spill unabashed and freely
Mingle with the sweat that conceals them so well
Providing the relief needed to carry on
Putting up a stellar show for the world to see

There are tears of regret for things of the past
Tears for the fears of things not yet come
Tears for the prayers not answered
Tears for the dreaded reality that brings you full circle
And makes you stand at a place you stood before
Holding the morrows of loved ones in your shaking hands
Knowing your words will seal the fate of all to come

And as the tears spill out ceaselessly
You find yourself in a spinning time machine
That takes you on a ride you never wished for
And all times gone by
All wounds you had thought cured
All hurts you had hoped healed
All you failures and blunders
Come back to haut you seeking answers
You know you do not have.

The flood gates are opened
There is no going back