I have always believed that nothing in life is fortuitous. This in reality is a lesson my father gave me quite early in life when he told me that no at single leaves moves without the will of a higher spirit. For the religious I guess it is God in whatever shape, for the non believer it could be a greater force. Anyway the outcome is the same. Every thing happens for a reason. I got a mail this morning from a very spirited young lady I admire immensely. She wrote in French and I reproduce her words and give a translation to the best of my ability.

Mais en même temps, on a de la chance de vivre au moins jusque 50 ans, il y en a en ce moment qui meurent de faim avant l’âge de 2 ans, ou qui meurent entassés dans des bateaux d’immigrés, ou des enfants soldats. Tu sais tout ça mieux que moi. La vie nous donne une chance d’être nés dans des milieux plutôt sécurisés, et on sais que ce sera le cancer ou un arrêt cardiaque qui va sûrement nous surprendre un jour. On a le choix de vivre sa vie comme on le  veut en attendant.

“But at the same time we have the good fortune to live till we are fifty or more whilst there are those who today die of hunger before they are two, or those who die crammed in immigrant boats or child soldiers. You know this better than me. Life has given us the advantage to be born in secure and privileged environments and we know that it will cancer or a heart attack that will catch us unawares one a day. Till then we have the choice to live our lives as we want to.”

In the midst of all the kindness and support that have been coming my way, it is these words from a very young lady that brought me back to hearth and out of the state of self-pity that I was finding myself sinking into. I said it in one of my last post cancer is just another vehicle of death like millions of others some as innocuous as a banana peel! I was about to let myself be ‘seduced’ by the larger than life image many have given this ailment as it’s cure has so many zeroes attached it that it makes it dazzling to our innocent eyes. And we get lured as carefully scripted and delivered spiels are directed our way. We are so overwhelmed by this manufacture hydra headed monster and we allow it to take all the place in our lives. And in doing so, we forget all the wonderful things that have been so generously gifted to us, the first being the enabling environment to make it this far.

Instead of spending all our time and strength and money (we often do not have) in looking for cures proliferate as we are such easy targets, let us take a few moments and look at all that has come our way and feel deeply grateful for not having been born a child who would never see her second birthday after having slept almost a thousand nights hungry. In a country where almost 5000 such innocent and beautiful children die every day robbed of their morrows, we have seen 5 or6 or 7 decades. Isn’t that precious. Have been thankful enough for this wonder or just accepted it as our ‘due’! So of we go the ‘due’ way then the cancer is also our ‘due’; we cannot be selective or dishonest.

We still have time and above all have choices that we can exercise. Think about those who have none, even when attacked by the same beast. We can live our remaining years either in ‘remission’ and abeyance and get lured by this new lexicon that is thrown at us or treat this ailment as we would any other and live each day as if it was the last doing all that is left on that forgotten bucket list of ours.

The Grim Reaper will come at the appointed time. Till then we have the luxury of living life as we want. Are we not blessed?

For the past month or so you may have seen a flurry of posts that sound more personal and often have nothing to do with pwhy or any of the subject I usually rant about. I seek your understanding and extend my apologies. I am a mere mortal with her shares of problems and challenges. Some are too insignificant to be shared  and blow way. Others however have the power to annihilate you totally if you are not careful. I am at such a crosswind at the moment.

Over the past few years I have come to realise that writing has become my catharsis. By laying my soul bare on the a sheet of paper or should I say a bland screen and pressing the key that will make the words fly across the universe I feel a tremendous emotional release. It is almost a sense of freedom, or rather the warm feeling that there are wonderful souls to share my pain with, souls who will understand and lend a helping hand.

I entreat you to be there for me in the difficult days that await me.

A little word from you will make all the difference

 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.