Sunday, October 9, 2016

Telling Your Story - It's Therapeutic Value





My work with The Max Foundation involves a great deal of intervention with patients and their caregivers . The Support Group meetings we organise take me and my team to all corners of the country and sometimes to other countries in the South Asia region. Early this year, I began conducting Story Telling Workshops at these Support Group meetings.

There was a specific rationale behind this decision .

Most of our meetings always did have a segment where patients or caregivers would come up on the stage or podium and share their testimonials with the group. There was always the challenge of having to help patients make the best use of this opportunity to share. Sometimes , 
one or more than one speaker would take off on a tangent and go on for a very long time , meandering through various milestones , some pertinent to the focus of the meeting but most times not. The audience would then get restless and distracted and these sharings helped neither one of the them- the speaker nor the listener.

We knew how important these testimonials were and what a difference they made. But not the way they were being presented .

It was obvious that the rather unstructured and informal format needed to be taken in hand and all the energy channelized properly so that there was a purpose to it and positive outcomes for all. 

And the Story Telling Workshops took care of this need  . Our speakers and story tellers learnt how to present their testimonials within the structure provided to them . From being a monotonous and sometimes one dimensional narration , the story became focused and well defined. With a beginning that introduced the situation , with a middle that was weighed down with the challenges that was central to the story and with a conclusion that mirrored the whole experience of coming to terms and moving ahead . Of course there was a central character and others in supporting roles and a conflict that was recognized for what it was , and an outcome that was the result of the attitude with which the conflict was resolved.

it was interesting to see how cancer was never the villain but a supporting character in some and the vehicle of catharsis in another and maybe the real hero in yet another !!

In city after city and meeting after meeting we introduced this workshop and the results were amazing and heart warming . One after another , patients and caregivers came up with their offerings that had been worked upon and fine tuned and polished , ready to be served with style and panache.

We managed to get a few of them written down and translated too from the regional languages and will be sharing them all through this month on various platforms . This is our contribution to this year's Maximize Life Campaign . Telling Your Story - its Therapeutic Value  .

Creating awareness , building  courage , forging partnerships, bashing myths and destroying the stigma attached to cancer - what better way in which to honour the courage of Max and maximizing all those lives that has been touched by the interventions of Max.

Sunday, September 18, 2016

Death, be not proud

Death, be not proud 
By John Donne

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Death, be not proud, though some have called thee 
Mighty and dreadful, for thou art not so; 
For those whom thou think'st thou dost overthrow 
Die not, poor Death, nor yet canst thou kill me. 
From rest and sleep, which but thy pictures be,
Much pleasure; then from thee much more must flow, 
And soonest our best men with thee do go, 
Rest of their bones, and soul's delivery. 
Thou art slave to fate, chance, kings, and desperate men, 
And dost with poison, war, and sickness dwell, 
And poppy or charms can make us sleep as well 
And better than thy stroke; why swell'st thou then? 
One short sleep past, we wake eternally 
And death shall be no more; Death, thou shalt die. 




Our dear Aunt, Ankichi Periamma as we all called her , passed away today. Our mother's oldest sister whose 100th birthday we celebrated a couple of years ago. 
Periamma who has been a presence in my life ever since I can remember . Loving , giving , caring - the embodiment of kindness and affection .
It is difficult to imagine our family , our world, without her . She was always there . And her children , our beloved cousins are now bereft . My heart broke and swelled with pride and compassion as I saw them perform all the rites exactly as she would have liked them too. Dressed in the traditional nine yard Saree , my cousins and sisters in law were quiet , efficient pillars of strength to their husbands . And as they adorned her body with a Saree in her favourite colour , her granddaughters , themselves young mothers were inconsolable . The young boys in the family , grandsons and grandsons in law stood by at hand , conscious of every single need of their fathers and uncles and in seconds rushing off to comply with whatever was required. As the priest chanted the mantras and gave his solemn instructions , it slowly sank into my mind too. Life had left the body . But seeing her calm and sweet visage I knew that Periamma would always be in our lives. She will live on in our memories and in all that she has taught us over so many years. For three generations of us . 
We watched as she was carried out sheltered and protected from the pouring rain and into the waiting van . Then she was gone .
I came home, called Delhi and spoke to my sorrowing grief stricken mother . Periamma's youngest sister whom she had taught, at the age of 6 or so the importance of being well behaved and well dressed . "Look at that little girl in far away America"  , she would say, I believe , to our hyper active and tomboyish mother. "Not a hair out of place, and she goes to work for a living. "  My mother would look at her married 18 year old big sister questioningly . " Haven't you heard of Shirley Temple ?" Periamma would ask her.  
My mother has never tired of recounting this to us . 
Today also my mother could only say , yes, she is gone but no one can take away her counsel from us. She lives on . 

So, yes, Death, be not proud . 


Sunday, September 4, 2016

New beginnings : another Ganesh Chaturthi in Bombay

The best time to return to Bombay ...after a six week whirlwind tour of North America I am happy to be back home . And it's September , always a favourite month when after weeks and weeks of rain and grey cloud cover , the skies are a brilliant blue with the puffy white clouds and the washed green of treetops creating the most refreshing mosaic when you look up. And it is that time of the month when Lord Ganesha comes to the city on his annual visit . 

My mind goes back to another September morning just short of forty years ago. Dr Bhatvadekar's Maternity Home , next to the Post Office in one of those cool, leafy lanes of Chembur and just above my bed to the left is a small window through which I can see bright sunshine touching the leaves with gold and making the brilliant bit of blue sky even bluer and the clouds like cotton wool puffs. Beside me is my new born second son , eyes scrunched up tight and sweet lips pursed in an endearing pout. And through the window flows in the mellifluous sound of devotional songs from the nearby Ganesh Mandal.

New beginnings indeed . The rains are gone , the sun is out , Lord Ganesha has set up his residence once again  and we have a new baby. And every year , come September , that remembered moment flashes in my mind's eye with unbelievable clarity and I am transported to that magical morning . My husband walks in holding the hand of our first born , all of 20 months but all of a sudden the big brother , and a little boy now in his own right . 

No matter Dr Bhatvadekar's Nursing Home , that elegant edifice in stone and wood is lost to "Redevelopment" and those innocent and simple Ganesh festival celebrations today have been replaced by vulgar display of political wealth and clout , the morning of Ganesh Chaturthi , every year never fails to fill my heart with joy and hope . 




Thursday, August 11, 2016

An Officer and a Gentleman

It was not really late ; just after 9:15 or so last night . My friend was dropping me off after dinner at my guest house . In a very, quiet and elegant neighbourhood in Seattle, just across the road from the Woodland Park Zoo, where I go for my morning walks when I stay here . 

A routine occurrence actually because I am with some friend or family for dinner each night and get dropped off and let myself in like i do always. 

Last night , my friend and I tarried a bit , finishing off our conversation and we noticed a couple of guys kind of loitering around . Very unusual . There's never anyone around at this time except maybe some one walking their dog ; these guys were different. They looked different. Young , casually dressed, a bit unkempt , one with a beard and back pack. The other with a can of some drink in his hand. A young lady walked past us to her parked car , got in and drove off. Another man walked past us briskly. 
All quite normal but something about the two men was a bit off. 

We subconsciously locked the car doors and decided we'd wait till they moved on before I would get out. They weren't making any moves towards the car but we were not taking any chances. We continued to chat , keeping our eyes peeled open. Just a tad nervous . 

Suddenly we were enveloped in bright lights and a Police Car pulled alongside our  vehicle. Car windows were rolled down and my friend , quite sure they must be wondering what we were doing in a stationary car parked for too long on the kerbside, quickly said she was here to drop her friend visiting from India but was waiting till she felt it was safe to get out for we'd spotted this person you know...

The Policeman, a young Asian , quickly parked his vehicle , came around to my window and reassured us that the guys were gone and he was here expressly because of them . The back packer especially had been noticed hereabouts earlier , questioned and sent on his way and the Police car had continued on its beat in the vicinity just to make sure . "Harmless, he is, Ma'am and seems a bit sickly ", he said but understood our reaction. "Let me escort you to the front door." 

And that's exactly what he did , that big young man in uniform, so reassuring and so gentle and kind, waiting till I punched the numbers on the lock of the front door, and opened the door to my suite . He then walked down the few steps to ensure my friend was on her way home too. 

Thank you Officer , I called , all the time thinking of my young nephew , a Police Officer with the Chicago Police Dept and how he too must have at some time eased many a tense moment for someone with his reassuring presence. 

And seen others too, through so many more alarming and dangerous situations . Bless these young men who put the safety of the public they serve above everything else. Thank you Officers . You are the real gentlemen. 



Thursday, March 24, 2016

The Corridors of Power

"Waiting in the Visitor's Room in North Block , Ministry of Finance . Appointment with the Revenue Secretary . Indescribable feelings . Was inside this building last maybe around 45 years ago when it was  our father's "Office" . Ministry of Home Affairs , North Block . 
I find everyone here so courteous and polite . The Security , the staff at the Reception , the Private Secretary and his team ; all of them so quietly  efficient. Babuji would be so proud to see the qualities he believed in still valued and practiced ."

I posted this on my Face Book page a couple of days ago . Truky , we are so quick to criticise, find fault and judge or condemn . How come we never stop to acknowledge and vocalise the positive experiences . It's become the fashion to dismiss all service providers, especially the "Sarkari" variety . 
I don't think we ever stop and put ourselves in another's place and understand the challenges others face in order to provide us the best service . I have noticed this in airports , hospitals , restaurants , stores ...how is it we carry so much of a sense of entitlement . 

One smile , a grateful acknowledgment of the service , remembering and thanking using the name of the person who serves you , stamps your pass, or does one of those tens of dozens actions that ease your path forward . 

To go back to what I have always thought of the corridors of power, the grand edifices that house the ministries ; as I climbed up the red , carpeted stairs that brought me in front of the Finance Minister's chambers and the kind attention of every one who helped me navigate my way to the waiting room I realised that it is I who hold an incredible kind of power. That of a citizen whose needs are taken care of by people who do their job to the best of their abilities no matter the magnitude of the stress and challenges and the paucity of resources at hand . The power to help those who serve us and making it easier for them to serve us. 




Monday, February 29, 2016

Aligarh

Thursday night , on my late , late flight back from Delhi to Bombay, I spotted this young man sitting across the aisle who looked very familiar and who returned my rather hesitant smile with an easy , energetic charm. Again I noticed him next to me at the baggage conveyor belt waiting with a quiet energy . It hit me then who he was and I asked him if he were not that incredibly talented young actor I was sure he was ? I wished him well and all the best for I guessed he was in town for the premiere of his latest film . 
Then last night I saw the film. While every single frame of the film is crafted with a delicacy unseen of in recent times, a few scenes steep into your consciousness and stay there with a chilling disquiet . 
The ones that I still cannot get out of my mind's eye : the one where the young actor I met , grabs his female colleague ( not unwilling ) in a hungry, hurried and violent embrace , and they kiss and grope and feel each other furtively. This then is juxtaposed with an incredibly sensitive and gentle sequence where the lovers are both men , the kisses are gentle and caring and almost worshipping ; the fingers on the faces caressing and the faces themselves bathed in an emotion I have no words for. 
Take a bow , Hansal Mehta and Manoj Bajpayee , take another , Rajkummar Rao ( my co passenger ) and I do believe Aligarh is a once in a forever film .

Monday, September 14, 2015

The 100 Saree Pact and my 26/100 Saree story


I joined the 100 Saree Pact in March 2015. A simple pact between two women in Bangalore who decided to wear sarees at least twice a week, and so a 100 in the year and to keep some accountability, document their saree and its story on Social Media ...just to bring the sarees out of the closet and wear them more often . Lo Behold it found a cult following , me included and we are now a family of thousands of women from all over the world , young and old , draping our sarees and telling their stories and sharing them .
 
When I posted this , my sister said, blog it . Its well said . I find myself revelling in my sarees and their stories and their memories and the retelling . Its given me a nice purpose in life and I have made many friends who share this madness. We are learning about weaves and weavers and their plight and committing to help the creators of our beautiful sarees...I find it a great stress buster .
 
So now that I have found my lost blog , let me post this . Written on 26th April 2015. Maybe more will follow ...
 
#100storypact 26/100 :
 
A classic Garhwal cotton in a pale beige, with a silk magenta border showcasing the traditional Zari weave that sets apart the Garhwal Saree. .This beauty is at least 20 years old and washed and starched and well over those two decades. It was precious because it was expensive (Unless there was an occasion, one only bought simple, inexpensive cotton sarees na – even for birthdays) and I saved it for very special occasions. Once I dropped some gravy on it; at a dinner with my husband’s office colleagues and I remember how much care and effort went into getting rid of that stain . I love the saree even more now for that. Talking of my husband I must also add another “specialness“ to this saree. It was bought for me by my husband while he was on official tour in Hyderabad.(My only accessories as by now you all know are earrings and these are some lovely Miney ka kaam waaley i found in Hyderabad two years ago) In all our 40 odd years of wedded bliss this is the second of the only two sarees he has ever bought for me!! And that’s not because he does not like to buy me sarees; he’s that perfect husband who knows I am that imperfect wife who is fussy and choosy about the sarees she wears. And even more perfect for he has no qualms in letting me choose the clothes he wears!! And this cool guy turns an even cooler 70 tomorrow so I thought today’s Saree and it’s story should be his.

So here goes : 41 of those 70 years he has spent with me and for that alone he deserves an award . We had first met briefly at a common Uncle and Aunt ‘s place ( my Athai / Bua was married to his Mama) in Bombay one October afternoon . This was after our Horoscopes had been matched and as we left for Bombay from Delhi , the two of us ; my Ma and I , I think my Ma was most relieved that the “boy” was a good 6ft something to my 5ft 7”. We had seen photographs of each other of course and just the fact that we were going for this face to face stuff meant there was no reason to say No. Nevertheless, when this tall pleasant looking guy walked in it was reassuring to see a wide smile on his face which reached his eyes and stayed there for the rest of the evening . We were allowed a little walk around Dadar TT Circle and a little tete a tete in the 6×4 Bombay Balcony of my Aunt’s flat in Hindu Colony and the fact that he listened to Elvis, The Beatles and B B King seemed to make it bearable that he did not read – no, he did not read books !! Not P G Wodehouse , not the odd Edgar Wallace and not even the random Agatha Christie . He asked nothing of me but his aunts and cousins made up for his reticence. So that was that and the wedding date fixed for four weeks later. And he came to Delhi and we got married and then he brought me to Bombay. (after a honeymoon in Nainital where he made me climb mountain after mountain) All in the space of 40 days and now it is 40 years and more since; during which he has given me two really awesome sons who are our joy and pride and given me his love for his city. It did not take too long for Bombay to replace Delhi in my heart (My soul still belongs to Delhi I must confess ) for he showed me what Bombay was and what it could become to me if I only allowed it to reveal itself to me . A brief sojourn in South and North America when the boys were very young as were we and then after being tossed about a bit in the rough seas of life overseas we came back to this crazy island city and picked up the pieces of our lives ….If today I am what I am it is majorly because he has let me become that. Early enough in our marriage I realised he wanted to change nothing in me. He just let me be. I still struggle to return the favour to him. To let him be. That is his greatest greatness . Oh yes , there have been many wars and battles and I swear I could have throttled him with great glee many a time . But then these have been like those gravy stains on the Garhwal . Carefully and lovingly taken care of , making the fabric of our relationship smoother and stronger. Sounds mushy ? What to do ? He makes me mushy …Happy Birthday to my old man …
 
 
 
 
 

 
To know more about the Saree Pact , check out the website
 
 
 

Grief is selfish


Note to my readers - if any that is .
For some reason I was unable to access my blog for a few months . So many things I wanted to say were lest unsaid or undocumented ...And then of course Face Book and Instagram too sometimes came in the way . Let me see how more regular I can be . If only to document stuff for myself .
 
I wrote this in July ....
 
Grief is selfish .

And grieving for a loved one is a self serving process .

It is all about what the loss means to you and how your life changes and all that you will miss now that the person who meant so much to you is no longer there .

The process of grieving is left to you to work out in all its complexities .

I don't think one can ever get over the shock of losing a loved one . It's like a gash on your arm that may heal (?) over a period of time with new tissues manufactured with one's own set of coping mechanisms but the damage is done . Your once flawless , smooth skin bears the unmistakable and indelible mark of the trauma .  It's ugly, painful and a constant reminder of the loss and of what once was . 
In my line of work I lose people that I have grown to love and care for .  More than is good for me or for them ; or so the text books say. But what do those these text books know . I have revelled and blossomed in the love my patients have given me so unconditionally and I know for a fact so have they. We live in a very special world that allows this unconditional love . For I am no one to them . Not a lover , not a parent nor child ;  not a sibling not aunt or uncle or anything that can be defined . I am to each one of them only what they want me to be to them . But to me they are my life , my work and my whole world .  They may know it or they may not. It makes no difference for the love I have for them serves me in a way that helps me help them . When they want it .  And how they want it.

It is a love that has allowed  me to give and in giving there is so much joy and such rewards .

I call it Qualified Love . And that charmed circle is peopled with little toddlers I held in my arms who are happy teenagers today ; teenagers whom  I have seen growing up into awesome young adults ; young adults becoming householders and making a life with their loved ones , proud parents become happy grandparents and then I have held the hands of many as they move on to find meaning in their "senior years " so to say.  
And because I am no one to them in their established hierarchy of family and friends I become , like many of my ilk ( counselors, therapists, treating physician too) an anonymous safekeeper of many secrets , longings , confessions, fears and more.   And I ? I am like a sponge , that very anonymity allowing me to absorb and retain without losing my own dimensions . 
And then comes Death to take them away for ever . Life interrupted . For ever.

And I am left the sole custodian of shared dreams and hopes and conversations .  
I am asked , by many , how do I cope with the loss of my patients ? When they die ? How do I indeed ? I honestly don't know . Each death , each loss hits me anew. 

Last week I woke up in DC just as India had already slipped into its late evening and found a message in WhatsApp from one of my young patients. It began as most messages do : Amma , ( to my dying day I will never be able to comprehend the kind of love and affection my patients have for me which makes them call me Amma )   And then as I read the message I felt this cold hand close itself around my heart.
The message said , Amma , Bhaiyya nahi rahey ab.

Mother , brother is no more. 

Just over a couple of weeks ago this young man and I had chatted over that very WhatsApp when he had come to office and missed me and we had promised to meet up once I was back. I simply could not accept that I was not going to be able to do that. Not ever again . It dawned on me then how far away i was from him and everything that connected me to him. Waking up in another country and in another time zone whereas back home the day was almost done and the reality of the loss final and unchangeable . Even though i was yet to live that day that had already in another place in time , taken him away.

 This is not the first time that i have not been around when someone in my care has died. I realise that this huge chasm between myself and a dearly loved patient is not just caused by my physical absence separated as we are by the oceans. That  chasm exists even if I am right there in the midst of the grieving family . For, who was I to him or to the members of the family ? Not family and  not a friend in the real sense of the word . Take away the reason for my existence in that dear life and I ceased to exist .
This harsh truth always prevents me from processing the loss , and therefore the process of grieving is a complicated one.  And closure ? Well nigh impossible !
Just as the bereaved parent or child or partner would balk at the painful process of taking down and putting away all visible signs of the loved one I too cannot bring myself to erase them from my mind . 
The phone numbers remain in my phone contacts . The photographs on my wall lull me into a false sense of continuity of the relationship and I  keep going to their pages on Face Book ...as long as these signs exist I exist . 
For all that I gave them , what I got in return was immeasurable . A validation of my worth to them ; of my love for them .  Without them I cease.  
What do I do with all that I know and to whom do I share those shared confidences that might help in the grieving process .
 Respecting Patient Confidentiality  is of paramount importance and is sacrosanct in our line of work . In many cases , not all family members or friends are even aware of the situation .  Time and time again I have caught myself reaching out and then drawing back and keeping my overtures in check.
 So in answer to that question raised above , my grief is mine alone and I grieve alone . I grieve for the loss of what gave meaning to my act of giving .

 DC Sunday morning 5th July : I have just edited the above and given it a spell check and shared a few thoughts with this friend I am spending the holiday weekend with . Mostly about the young man who has died and my anguish at being so far away and how it anyway makes no difference for the reasons given above .

We are having tea and reading the morning papers . And I come across the following in the Sunday New York Times ...

It is as though I am listening to myself
 


 

 

 

 

 

Monday, January 5, 2015

Death be not proud


I did not know the ESPN sportscaster who died . But I felt the loss in the same way as so many of my friends who knew him did; those who watched his shows , who were touched by cancer themselves and to whom he had become an inspiration.  My brother who has lived in Chicago for decades said he liked him and that Scot Stuart had been a good man. His quote about it was how you lived and why you lived and the manner in which you lived that beat cancer touched me and made me think of all the patients I work with and who are such an integral part of my life . 

 Like Rajeev . Unlike Scot Stuart , I had known Rajeev . For more than a dozen years . Rajeev too died of cancer a week ago.  And I had seen him face the shock of the diagnosis , cope with it , and build a new life around his cancer . He fought , yes. He coped , yes. He lived . Then it all came crashing down and he died . I never felt so angry . So helpless . And yes , so guilty .

 How come I could not do anything to save him from death and from that inglorious defeat by cancer.  Watching Stuart Scot's broadcasting partner pay him that touching tribute I too felt his sorrow . and I think eventually his comment , “flip the pillow over to the cool side and keep fighting " made me think it was not such a bad idea after all . On restless  nights when sleep eludes us ,  haven’t we all done just that ? And found some relief ? However low our spirits sink , there is always something that we can do . That is the life force that takes us ahead. 

A dear friend lost his father yesterday and I went to offer condolences and grieved with him. His first words to me summed it all up ; all that he felt at that moment . It’s over , he said. Just that . It’s over . And then his little nephew , his father’s beloved little grandson came rushing into the room , a happy smile on his face and joyous laughter gurgling from within ,washing over all of us .  In that one second I knew it was not over . And as my friend looked at his nephew in some kind of wonder I knew that he too knew it was not over . nothing will ever be over as long as there is laughter and sunshine in this world . As long as those who survive those who have passed on live and breathe and laugh and smile . The battle is never over. The fight is endless . Yet there is no defeat . Life wins . All the time .

Something else is niggling at my mind ...why is it that when we talk of cancer , it is always in martial metaphors ?  I myself ended the last paragraph using one . Waging a war against cancer , winning the battle , not losing to cancer and so on .  I know that recently this was questioned . As opposed to someone winning the battle against cancer , were we implying that some did not fight hard enough ? And therefore lost the war ? Went down dying? 

My friend’s father died of a liver ailment . Not of cancer .  Did he not fight his condition? Why do we use these metaphors of war only for cancer ? Is it because aggression is the only way to deal with it ? 

We are constantly exhorting loved ones "suffering'  from cancer to be "positive " ,  to "fight " , to not "surrender " to " be strong"  ..... Working with so many patients myself , I am guilty too of mouthing what may seem like platitudes. 

Is it because Cancer is insidious in its manifestation and more often than not tends to take one by surprise ? Is it because one has to take to arms with powerful and equally if not more deadly measures to deal with it ?  Is it because  it is only cancer that choreographs a war dance which demonstrates the confrontation between Nature and Science ? You take one step ahead and the other brings into play another manoeuvre ? 

One of my little patients  told me that he visualised the chemo inside him being released like an army of "good" soldiers to go in and kill the " bad " cancer cells .  He said he felt so safe and secure when he thought that way .  It was his own play station inside his little body . And he felt in "control " .  He would win the game .

Maybe that's why we feel we can wage the war against cancer. Because winning is always a possibility .  And now , more and more , a certainty . 

 So, Death be not proud . Not any more . 

 


Saturday, January 3, 2015

Christmas is Christmas


Last week we spent in Madras or Chennai as it is called now . Well, it was always Chennai but now even those who called it Madras say Chennai . I say both . Love the way both sound . Anyway , I digress...

We were in Chennai over Christmas . Hmmm Christmas . Not Happy Holidays or anything else . Just Christmas . Unlike other nomenclatures , Christmas is and always will be Christmas ; no matter how hoarse people cry themselves and bring Good Governance Days and such like celebrations to hijack this day of Love , Peace and Joy away from us .

SO back to Christmas in Chennai . Not just the churches of which there are so many beautiful ones in this city .Every store and restaurant , be it the Malls, showrooms , Saravana Bhavan or Lloyds Tea House or you name it , had a beautiful Christmas Tree and
decorations put up and the happiness and good cheer was palpable .

Restaurant Menus too had the spirit stamped all over them . And there was a wonderful feeling of assimilation and amalgamation as I saw a man in prayer remove his foot wear as in a temple and the Kolam side by side with the buntings ....

Made one wonder at the stupidity of people who try to negate the universality of this great tradition .
My special moment was on Christmas Day itself ......

Happy Christmas folks . Happy making love and friendship and finding joy and peace . You don't have to go too far ...it is right there . Just look around you . More importantly , look within you She walked up to me and showed me her pretty painted fingernails and looked at mine almost the same shade and said we were sisters . This was during our walk on Christmas Morning last week in Chennai . We had just wandered into the grounds and the beautiful Church of The Little Sisters of the Poor I think it is called . She smiled at me with glowing eyes and said she was so happy with the Christma...s gifts she received that morning . The slightly worn but still elegant looking pink Salwar Kameez and the matching nail paint . Given by some kind soul like you she said . Smiling at me You see, she explained , I am an inmate here .I am 71 years old she said proudly .... Looking good no? I hugged her and we stood like that for a while ..
 
And when I came back to Bombay , a specially wrapped box of Christmas goodies  , Rum Balls and all , waiting for me .....
 
 
 

Thursday, January 1, 2015

Social Media and I


All of us I am sure, can with great satisfaction, say that we have indeed harnessed the power of Social Media and made sure it works for us in our respective fields and profession . For me , to a large extent , it is in my interventions with patients I work with. Today any one , be it advocate or counsellor is happy to accept that this medium has come to stay and use it as an important means of communication Personally, I find Twitter , Face Book, Instagram and now increasingly , LinkedIn , a great means of networking . On different levels of course . Whereas we are free and easy on FB , maybe even flippant at times , on Twitter we are seeking knowledge and information and on LinkedIn showcasing our professional selves. Instagram is of course balm to the soul for all .


From Twitter I get all my news and current affairs updates , I follow major Cancer Organisations and other Medical sites , world class News Channels and News Papers , Journalists and Authors and try to share information by re tweeting relevant stuff . I was pretty surprised to see that I have over a 1000 followers and realised  folks out there must be liking what I re tweet or share.. . and then ahem ! I also saw that people actually have thousands and thousands of followers : )

 
Face Book is my virtual Living Room in my home. My Open House where my life is an Open (Face) Book and my family, friends and acquaintances are most welcome to hang around. Increasingly , many of my patients have also begun to discover FB and this I have seen has worked as a great means of unburdening the load of the disease for them. Finding each other on FB has helped them deal with their sense of isolation and also helped cope with the stigma each one has felt at some point in time or the other. In the last two years I have encouraged hundreds of patients especially from the smaller towns  to come on board the Social Media train . First as my friend and then of the support group I manage and then each other . The Smart Phone revolution has done away with the need of a computer and internet connection at home and these youngsters are having a wonderful time being connected all the time with their new family and friends . The bonding is wonderful and the exchange of information , very useful and helpful in encouraging good adherence behaviour. 


It was obvious of course that just being my friend was not enough and  they needed a closed forum to share more effectively and so a closed page was born ...and gradually , when it was the right time , they were ready to let the world know of their existence and an Open page is now on FB where we are showcasing their activities

LinkedIn is a site I was not paying much attention to but then it was apparent people were looking at my profile and I felt this would be a great way to showcase my professional side. Whereas one can take liberties on our personal sites one became mindful of being also a representative of the company one represents and I find LinkedIn a good forum to present a professional angle and showcase achievements at work .

 Instagram is an answer to my desire to "see" and "shoot" and "share" ...ever since the diagnosis of Glaucoma and my impaired vision I have felt this deep rooted urge and desire to capture the beauty around me and in this site have found many soul mates I may never meet but already know well enough to call them that. This is my ultimate stress buster .

I must of course say here that many of my patient friends and others are with me on Twitter and Instagram as well as ON LinkedIn but we are all in different avatars .  I have also made efforts to set up many other pages for the different causes I have espoused , like the Terry Fox Run, The Glaucoma Support Group  , Chai for Cancer and so on. 


As a chronic and compulsive Social Media user I have always faced many queries from some of my non Social Media aficionado friends /family about the actual value of these forums. Some are quite vehemently against these , especially Face Book , citing many reasons for their concerns . I am well aware of the so called  "pitfalls"  and "dangers" and try to be mindful about not causing any kind of grievous harm to others and myself because of my usage of these sites....yes it can become an addiction and for that I have strict rules for myself. No Social Media during working hours unless it is posting work related announcements .I do have those long hours of commute to indulge in this activity you see.



Despite all the negative views , I have always found sunshine and good cheer in my interactions with my friends and continue to post and follow my instincts and heart. I love to share my joys and love of life and my life's moments for in the sharing they become more real to me And then I know that to some extent those who follow me too enjoy these .

The following message I received from one of my Friends on FB really touched my heart and kind of reaffirmed my belief that there  must be some good at least in all of this .This is Dr Deepak Garg, a colleague of my eye surgeon Dr Rajul Parikh . I got to know Dr Deepak on my by now very frequent visits to see Dr Rajul and we may have exchanged a few pleasantries before becoming friends on FB . 

I paste this communication I received in my inbox a few weeks ago . I was in Melbourne the night it pinged in and it kind of says it all

And oh! Happy New Year and more power to Social Media in 2015 


Good Evening Madam,  The other day when the school kids had come over to the hospital was probably the first time i said more than a hello to you.  I have obviously seen you come visit Rajul for the past many months.  That day when the kids came to the hospital i was noticing that you were taking pictures and had that big smile on your face.  I then went on to read your post of that event on your FB page.  I have to say that you have the ability to find pleasure and happiness out of very small things in our daily lives.  Every picture of yours that you post on FB makes me feel that you are enjoying life and making the most of it.  I feel that my day will probably be a little better than what it was going to be because of that.  I am so sure that everyone who knows you and who is part of the Max Foundation team feels the same way about you.  I am just so sure of that.  You definitely have an aura about you.  I even told rajul this and he actually agreed He told me you are just like your mother.  Actually Dr Vijaya in SN is one of my favorite bosses.  As post graduates we 'kids' spoke about how elegantly she wore her sarees and carried herself.  You remind me of her all the time.   I just had to tell you this.......all the best and the warmest regards

 I replied : 

Good evening Dr Deepak ! I am so touched and humbled by your kind words . And so far away from home here in my hotel room in Melbourne I feel so blessed . Thank you so much for saying what you did . I am happy you like my posts and feel energised . Life is to be lived and to love life and the people in my life is all I want to be able to do . ....I was so impressed by your programme for the children the other day ..what a wonderful thing to do . I do feel there is so much we can do and find ways to make others happy ...I find happiness in the smallest of things nd then they become big:) Eye Solutions has great vibes . I love coming there . Ad Dr Rajul isso special . I actually forget I have Glaucoma . My patients teach me this lesson ...live life and be happy . Once again thank you and a big hug .

 

 


Saturday, May 31, 2014

On World No Tobacco Day May 31st 2014


Oral Cancer is the No 1 cancer in Indian males and No 3 in Indian women. The socio-economic and demographic attributes of our country have made it a fertile ground for the tobacco habit and in recent years,a noticeable rise in tobacco consumption is seen especially in the young adults.

 

In India ,besides Beedis and Cigarettes, tobacco is consumed in various other forms. Pan Masala and Gutka, both a kind of smokeless tobacco is responsible for an irreversible pre-cancerous condition called sub mucous fibrosis. Thanks to its very aggressive advertising and the introduction of easy to procure and store aluminum foil packaging, the sale and consumption of this harmful substance is uncontrolled.

 

Very popular in both urban and rural populations, tobacco is mixed with lime and chewed; the quid kept inside the oral cavity for long periods of time causing malignant changes to occur. Mishri, that is, burnt tobacco powder, is used to clean teeth and retained in the mouth while snuff is either inhaled in a dry powder form or kept in the mouth as a moist pellet. Tobacco toothpaste is also commonly used. All these are socially accepted forms of tobacco consumption and therefore more difficult to as people to abstain from.

 

More than 20 lakh youngsters every year join the ever growing community of tobacco users in India without fully comprehending that this habit will result in a chemical dependency on Nicotine that is no different from addiction to heroin or cocaine. Young adults who pick up this habit are at risk of dying prematurely, not necessarily in their old age but in the prime of their lives; losing 20 to 25 years of their productive adult life.

 

It is essential to reach out to the young and especially amidst their peers as it is during this period, in the company of their friends, that they adopt life style choices that become compulsive: long term habits detrimental to their well being. The resulting disfiguration and loss of life is something that can be prevented.

 

There has never been any hesitation in reaching out to children and young adults by tobacco companies and using innovative but blatant campaigns to lure them into becoming their customers.

 

I remember receiving a call a few years ago from the son of a patient I was counseling. He was playing cricket at Shivaji Park, Dadar with his friends and Benson&Hedges was distributing free packets to all the kids there. Whereas in all international magazines that carried tobacco advertisements those days , the Statutory Health warnings were mandatory , I remember the Asian editions of Time and Newsweek , especially, never carried them . In Hong Kong I have seen advertisements for cogarettes cover the whole side of a 30 odd storied edifice.There was no missing the message . 

 

While street children get addicted to gutka and pan masala for they are cheap and keep hunger at bay, young college going girls get hooked on to cigarettes for it assuages their hunger and supposedly helps keep them thin.

 

 
I used to work extensively in this field some years ago . With mill workers, factory workers , women working in the un organised sector, fisher folk , street children, children of sex workers , young school and college going students …and one hoped , over a period of time, that such interventions would bear fruit . But then a couple of days ago I was at a popular restaurant and after dinner as my friend and I stepped out , it was straight into a group of youngsters huddled together and feverishly smoking …….

 

 





 

 
 

Sunday, April 13, 2014

Miracles of science vs human negligence


He really would not have had even the slimmest of chances. The speeding truck apparently mowed his little car down, leaving nothing behind except a mangled mass of metal that snuffed his life out and the crushed and twisted remnants of his cell phone from which the Police managed to retrieve the SIM card. Which was how his dear wife of more than 50 years came to receive the news of her husband’s death.  A call that numbed her into a stunned state of shock. She told me that that they found the remains of his car just 20 minutes away from their home in Nandurgargh in Dhulia district.

He was so proud of his little car and had recently driven down all the way to Bombay to see his treating physician for his periodic follow up. Yes, he had survived Chronic Myeloid Leukaemia for over a dozen years, doing so well on the Magic Bullet and surmounted several odds during those years – the least of it being the bilateral knee replacement surgery he underwent a couple of years ago. In his early 70s, lightly built and only seemingly frail, he was already taking his first steps when I visited him in the Dadar hospital a couple of days after his surgery. Even now I can feel the way the blood rushed to my head and threatened to black me out as I felt his pain.

But he and his wife, herself a recently retired Matron from the local health centre in their town were champions throughout the procedure and I still can only marvel at how this elderly couple took such great and proud care of each other.

I still remember when I first them .He had just been diagnosed with cancer and the world had simply been pulled roughly from under their feet. She was still working and somehow managed to take the leave that would allow her to bring her husband to the best doctor in Bombay .

When she was told the only chance her husband had was the new medicine that had burst on the cancer scene as recently as a few months back she was determined to move heaven and earth to find out all she could about it.

Those early days in Bombay , she would tell me later , were the hardest. But she never gave up and like a tough and determined lioness fighting for her loved one she overcame obstacle after obstacle.

Since the medication was not yet in the market and cost the very earth, she was told it all depended on the company that was working on the drug. I remember her telling me how that name was etched in her mind and all day she wondered how she could get to them.

Providence she says brought her finally to me and the access programme into which he was eventually enrolled into but I do believe Providence received much help from the lady.

She was on a BEST bus on the busy roads of this alien city where she had to perforce spend these days running from the proverbial pillar to post. Gazing blindly outside at the busy city whizzing past her tired eyes , she says she suddenly saw the name of the company emblazoned on the walls of a building the double decker red bus was trundling  by.

In a second she was up and gathering her bags and unmindful of anything, even the fact that she was on the way to collect a blood test report from the hospital, she simply jumped off the bus!!

She jumped off the bus and walked straight into the fortress like office of the multinational drug company and demanded to see the “boss – person in charge”. The shocked receptionist to this day never fails to recount this encounter. With a twinkle in her eye, she has countless times told me how the lady in the crumpled saree, holding bags in both her hands, stood in front of her, brooking no resistance. Struggling to wipe the perspiration of Bombay and the sweat of her exertions with a corner of her saree , she simply refused to budge. There was something about the lady, her demeanour and her cold determination to see the big man of the company. Her husband would die if she was not at this moment allowed to go up. I have always felt that it was equally her determination but in no small measure the compassion in the heart of the receptionist that made her call the assistant to the CEO and convey the demand!

I have no idea how it all fell into place and how she eventually managed to meet the busy top man, the country head of the company. The executive assistant who eventually met the wife and facilitated the meeting too still remembers the desperate woman who waited for hours in the foyer and after all these years , never fails to ask after her.

Love, grit, compassion, courage and the grace of the Universe which peopled the drug company with such humane individuals colluded to ensure that the lady got the audience she wanted with the company head and the drug still on trial that would provide the extension she so desperately needed to the life of her beloved husband.

And this was how they came one morning, some months later to meet me and he came to be enrolled as maybe one of the very first recipients of the access programme by now in place through which the Magic Bullet was made available to all deserving patients.

They called me Madam, always, till the very end but treated me like a daughter. No visit to Bombay went without them coming to see me and in all the years not one appointment with the doctor did they miss. Not his surgery, not her long struggle with an injured foot – not the torrential rains of the Bombay monsoons – not anything. And they would mark the dates of the patient support group meetings and without fail attend each one of them; no matter they had to make the road trip. The last time they came they lamented that they had not been able to attend one of the Annual gatherings.
I can never forget the happiness on their faces when at one such gathering , they got to meet friend and supporter of our cause Salman Khan and spent some happy moments chatting with him and as our senior most volunteer , cutting our 10th Anniversary cake with him .

My lasting regret will always remain that I never made the effort to go visit them in their home. Not in all the years I knew them and despite heartfelt and loving, repeated invitations sent with train timetables and a recent message telling me they had even modernised the bathroom for me .

The call one dreads most from a patient’s family came to me one morning last week and hearing about the cruel and needless manner in which this gentle and dear old man’s life was taken, has stilled my heart and left a very cold and chilling anger in there.  Road traffic accidents caused by negligent, speeding and many times by drivers under the influence of alcohol are so needless, so cruel and so unfair.

We can fight everything, even cancer. Then why not this scourge?