Tuesday, November 19, 2013

The Emperor of all Maladies and the telling of a story

While clearing and tidying up a couple of shelves in my office today I came across what is maybe one of the most brilliant books ever written , a story told as only a genius of a story teller can ; on a subject that defies description yet has been described in as dramatic a manner as possible : Look at the well worn, almost dog eared book in the picture above. Yes , you know which one I am talking about : I dropped everything I was doing and thumbed through it all over again and remembered a writing workshop I had done with a group of newly diagnosed patients and their care givers a few years ago - to be accurate , the year Siddhartha Mukherjee's The Emperor of All Maladies came out . With a few of my volunteer leaders we had even gone to hear him speak at the NCPA ( Well, without the kind intervention of dear friend Anil Dharker , we would never have made it , having innocently gone hoping to find place in the Standing Room only event) - he spoke as well as he wrote and was charmingly modest and easy to speak with too . Inspired , I knew I somehow had to bring his work to my group and planned a meeting that would be structured around his book .

Here is a report I wrote immediately after conducting that very event : 2011 I think

Every year, during the All India Friends of Max meet we bring out, our by now well loved and eagerly awaited Book of Stories. Printed in The different regional languages, this collection of simple sharing opens windows into the lives of survivors and caregivers alike; acting like beacons of light guiding newly diagnosed patients in the journey they have embarked upon. It also provides a forum for the “authors” too, to talk about their experiences and find tremendous solace and strength in that act of sharing.

Most of the stories in this book are written by people who have in some way or the other been inspired by the life altering event they have experienced; the diagnosis of a life threatening illness. With tremendous courage and an indomitable spirit they have surmounted all obstacles and survived in the complete sense of the word.

The Friends of Max Support Group meetings held throughout the year in different cities brings together people from all walks of life bound together by this experience. Each one of them has a story and an example of shinning courage inside them which they know not they can share nor how to share. At one such meeting it was decided to have a Story-telling Workshop which would encourage the new members in the group to share their struggles and triumphs.

"In 2005, a man diagnosed with multiple myeloma asked me if he would be alive to watch his daughter graduate from high school in a few  months. In 2009, bound to a wheelchair, he watched his daughter graduate from college. The wheelchair had nothing to do with his cancer. The man had fallen down while coaching his youngest son's baseball team."

— Siddhartha Mukherjee (The Emperor of All Maladies: A Biography of Cancer)

Having read and been immensely impressed and influenced by the Pulitzer Prize winning tome which by now everyone is familiar with I thought it would be a good idea to use that very book as an example . A short presentation that focused on some memorable quotes and extracts from the book (like the one above) served as the basis of the exercise that followed.

The audience was excited to know that the book relates stories, one after another - stories about cancer doctors, researchers and cancer patients. In this way, chapter by chapter, the book also uncovered cancer's story through the ages

We all agreed with the author that “ patients tell stories to describe illness; doctors tell stories to understand it. Science tells its own story to  explain diseases…” and sharing the author's Indian origins , his growing up in New Delhi and having been to school with Bollywood King Shah Rukh Khan , seemed to only bring him closer. And when I shared with the by now totally involved audience that this young physician had won the Pulitzer, they broke into a happy applause feeling they already knew him . The best part came when I pointed out they were all part of the most important part of the book when Dr Sidharth spoke about the greatest discovery ever in cancer therapy and how a whole segment of the book was devoted to the history of their own Glivec ! As I read out from the book and the names of Drs Talpaz , Drucker and Goldman featured in the paragraphs there were gasps of recognition from the audience. It was high drama ; how Dr Druker struggled to get that final go ahead and how we were all part of that history . The presentation ended with the author's quote “I wrote this book to change the way people look at cancer — to demystify the disease which patients find mysterious. And this mystery ends up becoming a stigma. When my book can destigmatize cancer, that will be my real prize.”

Many FOM core leaders came up to encourage the group. Manoj, our volunteer extraordinaire came up to read from his story already printed in the book and exhorted others to contribute and do away with any fears of stigma or discrimination and one by one then champions from the audience came up to the podium with outpourings that would rival each other in examples of courage and determination to overcome. Some of them are printed in the book and some of them I will try and share with you in my contribution to this edition.

Anil's Story

He exudes such energy and envelops everybody in his honest, searching gaze that one cannot but be drawn to him and become totally involved. His twinkling eyes blaze fierce and proud and shine from his bearded face – no one can resist being moved and he carries the whole 200 strong packed auditorium with him when he speaks. I wonder if I can do justice to him but I can still try. Anil used to be a vegetable vendor. He lived with his wife and two young children and after his diagnosis five years ago, had to stop his small business as he was unable to cope with the physical exertion his work involved.

He will never forget his neighbours and friends who supported him through that agonizing period when he had to go from doctor to doctor and literally from pillar to post before he was guided to Tata Memorial Hospital for effective treatment. He does not hide the despair he felt at that time. He tells us how he simply packed a bag and set out for Mumbai once he knew this was where he could access treatment ; the best and least inexpensive too. Then he talks about his fist ever visit to the teeming metropolis that is Mumbai and how he felt such positive energies flood his being once he breathed the balmy air that blew in from the sea. He is told at the hospital that it is a long weekend due to some National holiday and he should go back and come after four of five days.

When you do not know anyone in Mumbai and funds are scarce, finding shelter is well nigh impossible so it seemed to be sensible advice he was being given. But Anil, as we say in the local lingo here is made from a different kind of clay. He was in Mumbai and whatever was in store for him, he was not going away till he met the doctor and heard from “the best cancer hospital “what was wrong with him. And, he tells us , eyes shining with mischief at the recalled memory ; it was Mumbai ! that Mecca of every self respecting Indian who at least once in his lifetime needed to walk the streets which he had heard were paved with gold .

And suppose the God above did indeed call him up suddenly ( after all he had blood cancer people told him)he would not shame himself by saying oh yes I went to Mumbai but came back as everything was closed or stayed put till everything opened !! His God would never forgive him! He was sure to ask him You were in Mumbai and stayed indoors??? Did not even go to eat Pani Puri at Chowpatty ?? or stayed put till everything opened !! His God would never forgive him! He was sure to ask him You were in Mumbai and stayed indoors??? Did not even go to eat Pani Puri at Chowpatty ??

Anil, that irrepressible and diehard fan of this city was not going to be idle but spend the days he was given exploring the city and enjoying every minute of his “ borrowed “ time here till the hospital “imprisoned “ him again. This way he tells us, he could tell his Bhagwan, his God, when he did eventually meet him that he spent his time wisely and well.

Anil then had to wait till the audience stopped laughing to continue with his testimonial. Everyone agreed he had done the wisest thing in the world. I remember Anil's first visit to our office and being totally overawed by the simple courage and acceptance of his situation by this exhausted but still vibrant man from Meerut. Of course I only got to know him gradually, over the periodic visits he made to Mumbai. But his bright presence and easy, happy demeanor always dusted off a little bit on us and we would all be smiling after one of his visits . Now all the others were getting a glimpse of this amazing man.

Anil then went on to share what almost all the others in the room had gone through. The waiting in line to make the file , the consultation with the doctor , the confirmation of the diagnosis , the finality of letting cancer into his life and the procedure for accessing the “magic drug” .

Today, Anil has relocated himself to Mumbai. Having been given another life he wants to spend it as fully and wisely as possible. He says the only way he can do it is by repaying all the good his friends and family, his doctors, Novartis and The Max Foundation have done for him. And what does he do in Mumbai? He has taken the responsibility of guiding and helping all new patients who come from outside the city and are lonely, lost and looking for that very helping hand. He stays at the lodge for outstation patients in a suburb in North Mumbai and is the lifeline for all those who come looking for treatment in this city. He has mobilized a group from where he stays who help in going to the railway station as part of a reception committee to welcome and guide new patients and caregivers. He accompanies patients to the hospital and helps them with the intimidating procedures of admission and treatment. He is never without an encouraging word or comforting smile.

Let us all doff our hats to Anil a true Friend of Max and friend in need to anyone who needs a helping hand!!!

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