The beast gnawing mercilessly my loved one for the past year now has finally been exposed. It has a fancy name meant to scare you and hold you in fear: Hodgkins t cell histiocyte rich large b cell lymphoma. This is the third time it has dared attack my loves ones and won the last two battles. This battle is mine to win. The last two times it kept us in such dread that we were terrorised to called it by its name. The C word was banned in my home, the same home I sit in today in the early morning and write these words. But this time I named it before anyone could give me medical spiel. TO me he is ZOZO. This t cell and b cell saga will not instill the alarm and panic it did last time. If you google it you find a load of scientific mumbo jumbo that means nothing to the layperson and is again meant to terrorise you. Actually the whole C Saga (cancer) seems to have been created to enrich the medical fraternity by giving it a larger than life image. When you patiently crawl and sift through all the information you get, you find that it has a fairly good chance of cure. Sorry I hate the word remission. I will hold on to cure.

However I want the control of the cure to be in my hands and blissfully my family doc will hold my hand and avoid I fall into the traps commercial medicine will lay for me along the way. In addition to what I feel is adequate and humane, I will draw strength from the age old medical traditions that have been so brutally and contemptuously been cast aside by those who think they know all. I will also starve the beast with all the foods it hates. I will go to the end of the world and farther to ferret out all every single option that will help my love one heal.

As I said earlier this is a battle I either win or die fighting.

This is the brave side. The one I have carefully and painstakingly crafted in the past weeks, since the word C entered our personal lexicon again. It is my battle gear: the words and expression to battle greedy men in white; the face to maintain while being buffeted by commiseration that will annoy, advise and questions you have to answer and above all the one to be perfected so that my loved one feels that everything is possible and that cure is just around the corner. Can’t he see it in my face.

This brings back a memory long forgotten. I must have been four and we had a terrible car accident in which my mother had broken many bones: ribs, sternum etc. I was barely hurt as she had protected me – no seat belts then – and looking at her started wailing thinking she would die. She just kept smiling, hiding her pain, and talking to me in reassuring words till help came, last as she had not let out a scream. I am not Kamala. But today Mama I need you to give me that strength and composure. I know you will.

However behind this brave face that is I hope well in place, I am breaking into million pieces. I am angry, scared, hurt, helpless and alone. The tears that are welling inside me threaten to come out and it takes me all my strength to stop them coming. Do tears dry inside you. I hope they do.

The C word can shred you of your dignity, take away your wealth and your life’s effort. I will not let it do so. I will heed good advice and shun the rest. I will draw strength from my nuclear family, my little grandson and the one that came into my life a decade ago and all my pwhy family, that is all of you.

Maybe pwhy came into my life so that I would not be alone in my time of trouble.

A news item this morning brought back memories I had vowed to forget. The item entitled: Rice with insects, clothes with holes took me back to so many instances of shameless beings who feel that anything is good enough for charity. We have had our share of such people and their interpretation of the word ‘charity’. According to many ‘rich’ ladies everything is good enough for charity: broken toys, incomplete games, copy books filled up to the last page, torn and useless clothes. We were even ‘gifted’ an undergarment with a sanitary pas still attached to it!

The article I mentioned above is about the relief being sent to the flood victims of Uttarkhand. Why do people think that poor people or disaster afflicted people have no dignity or self respect. Why do people not put themselves in the place of those they are sending their supposed charity and think how they would feel. Is rice with insects something they would eat?

Donations we receive time and again do not seem to be something that has been done from the heart, clothes carefully chosen, washed and ironed before they are packed. It seems more like someone is emptying cupboards and store rooms and instead of selling it to the kabari wallahs, makes a phone call to a chosen NGO and asks them to come and pick the ‘donation’ up. We have been caught in this too many times. Now if the phone rings and one recognises the number of one of the ‘generous’ ladies, one does not pick the phone up. I am sure the said lady has a list of NGOs and just moves on to the next.

Over the years we have had many such experiences. One of the most upsetting one was when the PR person of a known actor badgered us to cart a child who needed heart surgery to some place to be interviewed! The flip side is a letter I received from a young child asking me whether it was wrong  to help those in need. Thank God for people like her otherwise one would simply give up on life itself rather than be part of this ugly world.

I have been often asked why we sponsor open heart surgeries for the poor who can according to them have more kids! I have given up getting outraged. It is too exhausting. How do you explain to someone that a mother whether poor or uber rich loves her child in the same manner, that parents whether poor or rich will do everything they can, and in the case of the poor sell everything they possess to give their child the best treatment possible. How do you explain to someone that the loss of a child is a painful and traumatic for any mother rich or poor. You just don’t. You simply grit your teeth and walk away. I remember the night when the story of the first open heart surgery had been aired with my number and the strange and disturbing calls I received throughout the night. One caller asked me if I could guarantee that the operation would be successful and the child would live. I felt like telling him that I could not guarantee whether he would see the next day, but rephrased my thought my telling him I could not ‘guarantee’ whether I would be alive. I would like to tell that caller that the boy is alive and kicking and is in class XII. And before I end this tale, I need to tell you that the fact that the story came on air is also worth counting. Actually a journalist friend had written a piece about this boy in a leading newspaper. It was to be front page on the Sunday edition. A late night call informed me that the story had been killed and replaced by the story of a rich lady who had paid 50K to the person who had found her lost dog. This made me so mad that I did what I never do: asked for a favour!

There are many instances that reveal this ugly aspect of our society. One of the most hurtful one was when a lady flew into a rant when I tried to explain to her how our boarding school programme ran. She could not understand how one could spend so much money on just a poor slum kid! It took all my savoir faire not to slap her.

India would be transformed if we accepted the concept of the neighbourhood school. But that would mean accepting that our child share a bench with our driver’s daughter.

Long way to go….

Emotional bank is an expression I heard for the first time some days back during Utpal’s session with his therapist. She was explaining to us the fact that as Utpal had finally begun to think of ourselves as his ‘family’ or the closest thing to a family, it was important that we fill his emotional bank to the brim as once he returned to his boarding school is emotional would get depleted rapidly. What she told us was to fill it with love, trust, security and bonding. 

I went on a net search to find the origin of this expression. This metaphor was coined by Stephen Covey and seems to be a way of strengthening family ties. It is definitely worth a read as it could help restoring trust within members of a family. I will however take some liberty and use the same expression in a slightly divergent manner. We all face difficult times and have our own ways of facing them. When faced with a situation when a dear and loved one is facing emotional upheavals and processing facts that are painful and often felt as unmerited, they rely on their partner to draw the strength they do not have and take the decisions that they fear. This is where I stand today. In all the challenges that I have faced during our 40 years together, he has been the one to hold my hand and walk me through. When I have been slighted by one and all, his trust remained unwavering. Be it a personal or a work issue, he has never failed me in any manner whatsoever.

Today he has again put his trust in my hands and I cannot fail him. Starting this week I will have to take life altering decisions and stand by them. I will have to answer questions, will have to face commiserations and listen to a plethora  of advice with a smile on my face and yet firm in my mind that I will only follow my intuition and hart. This is a journey I do not look forward to and yet cannot escape. The roadmap is not in my hands neither is the final destination but whatever it may be, I will be held responsible for every step.

To be able to undertake this journey I need to fill my emotional bank to the brim as I will be drawing on it to simply keep myself afloat and moving ahead. This can only be filled by the love, trust and support of all those who have believed in me in the past years and have become more than family. Without each one of you I will not be able to keep my brave face on and not break. I hope you will be there for me. 

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