Nobody asked me to tell my story, but I desperately want to say a few things. All of you who know me know how difficult it is to shut me up when I begin talking and yes, writing also, so maybe that is why nobody asked me...
But indeed it was me who asked everyone to write their “story”. Isn't it strange, calling real life, excruciatingly real and alive, a story? I am surprised not one of you turned around and said, “What do you mean, 'our STORY'? We are having real life experiences here, not some fairy tales or ”ghar ghar ki kahaniya…“ Instead, each one of you just put down your lives on paper and gave them to me just like that. For this alone, a very big Thank You!!! Some of you thought it an honour, some were happy to share. Others wanted to share after learning from others…that it is indeed possible to talk about yourselves and Rajeev wrote only because I threatened never to hug him again Hey Rajeev, caught you there but you know I would have never carried out that threat!!!
My favourite writer P.G. Wodehouse once said “There are two ways of writing, (one is…) a sort of musical comedy without music and ignoring real life altogether; the other is going deep down into life and not caring a damn.” My friends of Max here have chosen the latter and definitely not given a damn, but I can hear the music in their stories and the magic of pure laughter in these outpourings. These are not stories but songs set to the purest of melodies, taking me on the wings of Love and Laughter, to a place where there is only hope and happiness and lessons in, yes, Love. Unconditional and uncomplicated Love. Seriously, it is all about love and learning, and both are timeless and endless. One can never love enough, one can never learn enough. So you keep on loving and keep on learning and take everyone you meet on this voyage with you. This is what the last five years with all of you has meant to me. So much of love and so much of learning.
I have been allowed to witness the trauma of families who have been sucked, helpless and floundering, into the vortex of a life-threatening disease, and I have then seen them rally around and with the twin weapons of love and faith emerge strong and secure in their love for each other. In the end love is all that matters; all you need is love.
I would like to share with all of you a couple of “stories“ from my diary…read on.
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November 2009 Young Mangesh was approved into the programme last week and he came with his mother, a daily wage earner, yesterday, to collect his first supply. Very normal, routine process of course as it is with any new case that undergoes the process of applying, getting verified, undergoing the evaluation process and being awarded a decision. Bright eyed and with a warm, happy smile reflected in those eyes, he had attracted attention on the first visit itself.
As I entered the building that morning , unusually early myself, I was in time to see mother and son being turned away by the Secom Business Centre's watchman asking them to come back at 11am when visiting time began at the MI Office.
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When Dilip Lokhande came to visit in October I realised I had not seen him all of this year. Dilip is a very special person in my life (more on that later) and so I was very happy to see him and see him looking so well. He had this accusatory look in his eyes when he came over to see me and though the words were unsaid I heard them loud and clear. “How come every time I come you are not here?”
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I spent a major portion of today with two fathers and their respective sons. Ajay, newly diagnosed and only son of his father Nandlal. And Ashwin, newly diagnosed father and his physician son Sushil. Their love and concern for each other, their courage and faith in each other, their reversed roles as care-givers and protectors, one to the other, has taught me all over again why I am at once proud and humbled by the work that we are doing.
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This year has been a very special year for Shajahan.His Max Station and dear Beena Chechi would like to add to his story sent last year Max’s 35th birth anniversary fell on the 19th of October, 2008. And Shajahan chose to get married on that very day. He wants to ensure that he never forgets to celebrate the birth of the courageous young man who is today his unseen role model. As we know from his testimonial above, he was diagnosed with CML in January, 2002, and has been on Glivec, under Novartis’ GIPAP programme, since June, 2005.
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Fourteen year old boys can be an absolute delight or absolute terrors. What was a heart wrenching surprise was the demeanour of this fourteen year old boy, weak from not having been diagnosed for over two months and in pain and discomfort thanks to an enlarged spleen. Indrajeet Sahu from distant Bihar came to see us armed with an application for enrolment into GIPAP, his medical papers in a tattered bag, leading his father by the hand and an unimaginable brightness and courageous light shinning from his eyes.
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This ray of sunshine walked into my office half an hour ago. Shivam. He studies in 6th grade and would love to play cricket the whole day - “par Naani ji nahi maanti” (“but my grandmother will not allow that”). Diagnosed in January of this year Shivam lost his Mom and Dad to Tuberculosis five years ago and he lives with Naani ji, Mom's Mom - who has two teenaged sons of her own - "Haan, kabhi kabhi jhagda karte hain lekin hum log Masti bhi bahut karte hain!!!" (“Yeah, sometimes we fight, but we also have great fun together!!!”)
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