Friday, November 2, 2018

Grief is selfish

I lost a very dear friend to cancer a couple of weeks ago . Even though I knew the last time I saw her would be the very last time too , I have still not been able to process this loss ...

What I wrote a few years ago comes to my mind ...

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 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, June 5, 2017

Of Sheila , Reshma aur Shera ...a Delhi memoir of my jawaani

Of Sheila , Reshma aur Shera ...a Delhi memoir of my jawaani 

56 years old today , she was very much the new heart throb on the block then  , very stylish and so much the Delhi Diva. Hosted almost all the gorgeous Hollywood superstars who came to her city . We college students loved her chutzpah and were eager to be seen in her vicinity . Some of that style maybe rubbed off on us too. Not just Hollywood stars but those who later came to be known as Bollywood stars too , glowed in her glory . She changed the face of Paharganj with her svelte avatar . Her name was Sheila , and a couple of weeks ago she gracefully and quietly made her exit from the landscape of the city that for more than half a century had been her home and to which she had added so much panache and style . 
Sheila , of the 70 mm screen fame, recently brought down her last curtain , and screened her last film. Like Regal had, in Connaught Place , a few weeks earlier . 
Having grown up in the Delhi of the 60s , and left it in the 70s , it is unimaginable to think of the city without these landmarks . Regal , Plaza and Odeon in Connaught Place and then the lady come lately , Shiela , in Paharganj . Of course later there were other cinema houses, (couldn't give them the stately title of Theatre ) like Sapna , Archana , Priya and even Chanakya , but these grand ones were different . 
And Shiela was the one that stood out , even amongst those grand ones - the modern one . 
Those were the days when going to see a film was the highlight of the month . Even after joining college, a hard fought and won treat . I could never not tell Ma and go see a film . Because then after seeing it I couldn't tell her all about it right ? And that re telling and sharing was, for me , the most fun part of going to see a film . So in my home, one film a month was allowed . And so one also had to make sure it was a treat well chosen and well planned . And in those days going to see a film was such an orchestrated exercise in itself . Booking the tickets , hoping they were available of course and with the ' approved ' company / friends . Then the wait , counting the days and hours and praying no calamity would cause the plan to fall through . Like no public figure's passing that would send the city into mourning ( yes , cinemas would shut down for a week ) , no rain , no any other calamity , you know what I mean . Of course you don't , today's child . You who have Netflix on your finger tips and a multitude of multiplexes and devices at your disposal and maybe more indulgent mothers !!

Regal was where we would go to when we were very young for those very rare and occasional morning shows with parents and grandparents - Tamil and Malayalam films . Really GOOD ones or Mythologicals . And Regal was also where , as we grew a little older , we siblings would go watch films every once in a while . Anupama with my sister ( I was a little upset then that the B&W Anupama was my lot instead of the bright and colourful and more popularly promoted Milan-not now though ) Around the World in 8 Dollars with my brother ( he I am sure only accompanied me because of the West Indies Cricket segment in it ) There would also be the occasional films shown at the Sports Stadium cinema simply called The Stadium . I remember being enthralled by Cliff Richards' Summer Holiday and The Young Ones . And oh, Cantinflos' Pepe we had to forgo when Pandit Nehru passed away on the day of our show.

These were  'safe' locations . 

The only two times I have been to Old Delhi to see a film was under very careful chaperoning . The first was under our English teacher Mr Katyal who took the Drama Team to see Julius Caesar in preparation for the play we were putting up that year ( 1968 , and I was Julius Caesar) .  This was at Golcha and primarily to help us get our costumes and dialogue delivery right . 

The second was to Delite , at Asaf Ali Road I think and dear cousin Samban it was who put my younger brother Raja behind him as pillion rider and moi into the side car of his motorcycle. And we went to watch Jawani Diwani . Oh what a ride that was, both to the theatre and in the theatre !! 

No our glamorous Sheila was not a safe location for a theatre . I mean , West Kidwai Nagar to Paharganj ? No direct bus and not near the college and not even Connaught Place the farthest one could venture from home .  So it took all our combined persuasive skills , mine and Chandra's to get our respective mothers' Ok girls , you can go !!!

It was a hot summer June afternoon and we had won permission for the Matinee Show at Sheila - the film , Sunil Dutt's Reshma aur Shera . I adored Sunil Dutt and Rajasthan and everything about that part of our land fascinated me and called out to the incurable romantic in me and I was in love with the songs and the ' Radio Programme' of the film on air had me enthralled . The Radio Programme was the 15 minute Radio Trailer of a film . And in those days , listening to one was almost as good as seeing the film . Almost . There would be snatches of songs and scenes / dialogues and Amin Sayani's honeyed voice enticing you to go watch the film as he built up the suspense . 
Most of the time one made do with the vicarious listening. Some films you knew you would brave an arm and a leg and Ma's censure for . Reshma aur Shera was one of those and Paharganj was one mountain of an obstacle we said will scale and overcome .

And was it worth it all . What a canvas and what a production this film was . The grandeur and the scope , the casting and acting , the colours , the music , the power of the emotions - a powerful tale of love and revenge , family bonding and family feud . It had it all ! Till today I'm confounded that the film did not do well at the Box Office . But that's the Box Office . So fickle . So cruel . 

The film ends with this colossal dust storm that buries along with the ill fated Reshma and Shera all their dreams and hopes , all thoughts of love and forgiveness and leaves you exposed to the bigotry and hatred that still
seems to fuel the world we live in . Till today , sadly.  We got up from our seats, wet eyed and heavy hearted - a tragedy of epic dimensions had just unfolded before those eyes. And we were two shaken young girls who only wanted to get back to our safe homes , in the bosom of a loving family where no one wanted to kill and destroy each other . The film had been so very powerful . 

We stepped out of Sheila and it was like we had stepped right back into the film . Anyone who has lived thorough Delhi summers ( well, I don't know about now but then , yes ) will know what a summer Dust Storm is all about and there we had one swirling all around us right there. It was Reshma aur Shera Part 2 . Fine grains of sand flew about us fanned by the ferocious winds and finding their sharp, piercing way into our tightly shut eyes , into our clenched mouths and up our nostrils . We held on tight to each other and waited for the storm to ebb a bit . It did of course but only when the heavens opened up and the cool and cleansing rain began to beat down upon us. 

Rain or sand ? I guess it was rain because the sand had settled down . It was well past six in the evening and of course public transportation had taken a toss and we would have been happy to even find a camel to take us home that's how bad the scene was . 

DTC was notorious those days and the even more notorious ( as we have sadly come to know about them now) private buses were not yet unleashed on the Delhi streets then and we of course had bravely taken a scooter ( autos were called scooters those days ) to get to Sheila . There was nothing on the roads whatsoever that would take us South Delhi wards now. It was raining and the usually long and bright summer evening unusually struck short and oh so dark . 

I for one knew we were going to be so late home , that is, if we reached at all , and no enthusiastic and emotive retelling of the tale of the doomed Reshma and Shera was going to save me from the wrath of Ma. 

We began walking. We got soaked in the first two minutes . We kept under the trees. Which was stupid because they deposited chunks of water on us from their sodden leaves every time one gust of wind shook them . Like a long haired banshee drying her tresses. 

We walked past known and unknown Delhi landmarks . I remember stopping at the beautifully columned entrance of the Max Mueller Bhavan taking for a while shelter from the storm ( no I had not heard the Bob Dylan gem then  , in fact not even heard of him , Heaven forgive me that trespass ) . We moved on fearing getting more delayed . Then Chandra had a brain wave . Her father was in the IFS , the Indian Foreign Service and she knew of the new Multi Storied ( as we called high rises those days in Delhi ) quarters where the External Affairs Officers were housed and she knew a  family there . Like a pair of drenched sparrows we finally got there and I remember we somehow dried up as best as we could and praise the Lord , called up our homes and assured respective Moms that we were safe and well, almost dry and in respectable shelter. No cell phones then , remember ? 

We eventually got home ...very late . Our mothers so relieved to have us there . I don't remember being chastised or being met with any anger . But this was one evening I will never forget . And the one film at Sheila I will always remember .  

Saturday, June 3, 2017

The story of a survivor who did not survive

 Three weeks after I last met Hira at her home in the village in Pachubunder , she was diagnosed with a fast growing , deadly , metastatic adenocarcinoma and in another ten days she was gone . Just like that . The cancer that so cruelly took her away was totally unrelated to her CML which she had so bravely faced and factored into her life for over a dozen years.

So Hira did not survive but today on Cancer Survivor's Day I can only salute the beautiful , loving , kind , strong and generous human being she was . She's the stuff survivors are made of . 

Meet Hira Goma , a Koli fisherwomen from the seaside village of Pachubandar , which lies to the far North West of Mumbai and has been home to generations of Kolis who are  the city’s traditional fishing community. The Kolis, wiry and lithe fishermen , and strong and hardworking fisherwomen in their bright and colourful Sarees are the original inhabitants of this region and have lived here since Mumbai was nothing but a cluster of seven islands  strung together with lush palm trees, and surrounded by mangroves and reefs. 

Like many other women in the village , Hira's day also begins at the break of dawn as she rises even before the sun does. Morning chores include cooking for her large extended family after which she takes off to the wharf to get her fish . Hira can return home only after the heavy load on her head is sold. And this may take all morning and afternoon to accomplish. Once back home, innumerous chores still await her and one can see her with other women fixing the torn fishing nets or mending baskets and drying dozens of little bombil fish ; all this in the midst of  meeting other household and family demands . 

Hira Goma is deceptively dimmunitive. And her lined and smiling face can become a mask of grim determination if the situation demands it. 


Her working day starts with loading on to her basket the days's catch the menfolk bring in on their boat and taking it to the bazaar to sell. She has to deal not just with all sorts of customers there or those she seeks on her door to door sales route but also the competition ; her peers and neighbours in the village. She is outspoken and cheerful and freely interacts with everyone . It is she who alongside her husband and other menfolk in the family equally provides the economic stability her  family needs and therefore commands great respect. At 55 plus , Hira puts in a full day's work and lets nothing come in her way . Not even CML which she was diagnosed with more than a decade ago. 


Times were very tough for Hira and her family those days  . The reckless urban growth that spread well beyond the city limits had begun to ruin the sea and the coastline which was their only source of livelihood. 


Earlier, the fishing expeditions undertaken by the menfolk of her family would involve two or three boats bringing in many baskets of different kinds of fish. Now, just one boat went on maybe one or two trips and came back with fewer baskets and fish and that too, tiny fish. The sea had become full of pollution caused by oil slick and chemicals , bemoaned Hira's husband . There were no fish in the sea. The Kolis were facing a severe crisis already when cancer reared its ugly head in their midst. 

And it threatened to take away Hira , the mainstay of the family . 

Hira's mother was devastated . Why should my daughter be taken she cried , says Hira. Let me die in her place . I have lived long enough . The whole community was in shock . Her family shattered . Even though Hira was childless , she was mother to all her nephews and nieces . Would they be orphaned ? Her husband adored her and was determined to do all that was needed to save her. After all, he said , we battle the forces of nature when we go out to the sea. We are hardy people and we are ready to die earning our livelihood . What is cancer in the face of the dangers we face everyday . 


Harnessing whatever resources they could garner , no stone was left unturned in seeking medical advice in the little fishing village . It took time and great effort but step by step , seeking information and showing persistence , they managed to get the diagnosis confirmed and found their way to Tata Memorial Hospital . Once there , it was just another step to the referral to The Max Foundation and access to Glivec. 

In all these years , through all of the struggle and emotional upheaval , Hira has remained her active and busy self . Not for one day has she missed her routine of the wharf and the bazaar . Equally important , she has not let her work and routine come in the way of her treatment and CML management protocol ! 

She can never forget the first time she met everyone in the Max office she says . I met my Amma . It was like meeting another family . All the fear and worries disappeared when I met Max Foundation . Over the years this bond has only grown stronger and deeper . On every visit she will bring for us the best and freshest of the day's catch . Not only that , she will cook the most delicious of fish curries and bring it for us to have with our Lunch on that day. 

She never misses a dose , not one follow up visit is neglected or abandoned .  The distance between the city and her fishing village is not measured in kilometres but in the benefits she gets from her treatment . She knows the little orange capsule is what is keeping her alive and active . But she also says with a shy smile that lights up her face that even more important than the medicine is the love her husband has lavished upon her . He has stood by her throughout these years and encouraged her to do exactly what she wished . He has never let her feel that her cancer has diminished her in any way , affected her ability to work and live her life as normally as before . 

Hira Goma stands very tall and proud and wears hear cancer like a medal . 



Friday, June 2, 2017

The world is your oyster - find your place in it

Like all young girls who grew up in the 60s I think I too wanted to become an Air Hostess . There was such an aura of glamour around those very words and visions of flying the skies in a Saree was very exciting . Then at some time I wanted to become a doctor , a newsreader , an IAS officer and later on even advertising . Of course , growing up in a very traditional Iyer household put paid to some of these aspirations and somehow I never really pushed for a career that may have maybe just received a nod of approval from the parents . Like the Doctor / IAS one .
I completed my Bcahelor's Degree and must confess felt no urge to continue and go in for a Master's . I was happy to continue with my music classes and took up a job in a neighbourhood school which was a respectable option. 
A degree in English Literature and Nursery School teacher , I guess, looked good as an accompanying note to the Horoscope of a good, Tamil , Iyer girl . I wasn't complaining and in due course , a matching Horoscope of a good Tamil Iyer boy found its way into my parents' delighted and maybe even relieved hands and I was married off. 

I loved the direction my life took. Married to a fine young man and mistress of a very smart little apartment in the housing colony of the Refinery he worked in , I was every inch my mother's daughter and took great pride in keeping a nice home . It was a welcome challenge to do so with just enough resources to make it fun but not a chore . I had grown up seeing my mother create such a happy and beautiful home for us with just basic necessities . Never had she allowed any kind of want ( and there were quite a few of those ) to come in the way of making sure we five children and our father and our grandparents and the assortment of young aunts and uncles and older cousins who were a permanent feature of our household had all we wanted to make life feel good . I began my family life with the perfect blueprint that was my mother's legacy . A happy and diligent home maker and when the children came along , a devoted mother too. My home was my world . Books and music , the inherited love interests from my family were my support systems . 
House proud and home bound - that was me ; even when we followed my husband for a few years to Venezuela and then to the U.S. 
Waxing and polishing the floors , making sure every door knob and artefact in the house was Brassoed to perfection , sewing curtains and casual clothes for the guys in my life , making all kinds of possible pickles and sweat meats and celebrating festivals and what have you . 

Housewife , homemaker , a mother  . Working all day , but not a working woman . 
Today , when I look back at those days , I realise they were full and fulfilling days . 
And then I became  " the " working woman . Circumstances decreed that I find some work that would help me help my husband shoulder some of the responsibilities of the household as we found ourselves in a rather challenging situation . Our sojourn in Venezuela ended when the economy collapsed there and saw us lose quite a bit of our savings . And back home things were not very welcoming either . A dear friend urged me to teach my young sons to make a sandwich for themselves when they came home from school and leave me free to go out and find a job . 

It was 1987 and I was 35 years old . I had no qualifications . No job experience except some baby sitting and selling Avon Cosmetics in the U.S.  I thought back to my teaching days before I was married and in all innocence applied for a job at the local school . I was in for a rude shock . They wanted a B Ed degree. So I applied for admission into the B Ed programme only to find they needed teaching experience . My pre marriage job did not qualify . 

For the first time in my life I began to rue the fact that I had not attempted to study further ; I had not pursued a Master's nor had acquired any super speciality skills . 
I remembered with some regret those fleeting ambitions I had once nurtured . It was I think one of the most difficult times in my life . But I did not have the luxury of too many options and had to be out there doing my bit . It became some kind of an inner demon I had to deal with . I knew I had it in me and I needed to show it to myself more than to the world or anyone around me. 

I must also share that it had been a difficult period post our return and thanks to the usual family and " in laws " shenanigans quite a bit of my confidence in myself had been eroded . So that was impetus enough . 

Today when I look back at the three decades over which I have built my career in cancer care I realise there is a bit of everything in it ...all the career options I had once dreamt about . I travel extensively and yes, in my Saree ; I talk on radio and other audio visual media often , I could not get closer to the field of medicine than I am now and yes , I work very hard at promoting my cause and enjoy finding the best copy to promote and brand my outfit . My administration skills have been honed to perfection and I can hold my own in any corporate environment . I conduct various training and therapy workshops all over the world , I run a full fledged office in the Mecca of business in India , Mumbai and find tremendous satisfaction in what I do . 

To be honest , I did not choose Cancer as my field . Cancer chose me. Like I said , with my limited skills and experience and talent , there really was no luxury of choice . I had to accept what was offered - a tough and taxing assignment raising funds for a cancer non profit . And once I took the plunge , believe me there was no looking back . Like I said I had to prove myself . To myself . And in the founder of that non profit I found a great mentor and a teacher . His greatest gift to me was that he created a job for me around what he saw in me . 

So I got myself a monthly local train pass and did the Vashi to VT commute every day . Mind you this was 30 years ago when there was no train or BEST service from the new , developing New Bombay . I was totally dependant upon the State Transport bus service and the Harbour Line local railway service . If you are Bombay bred you know what that means . 

But I was determined to make this work . I realised and recognised a certain hunger in me that pushed me to find a place for myself in the arena that had opened out in front of me . I climbed up countless stairs and knocked on many doors in all those cold and unfriendly high rises in the richest of cities to ask for money for cancer patients . You don't know how difficult it is to ask for money till you go out there and do so . And yes , even selling Avon Cosmetics to American housewives was easier . I went to mills and factories to talk to the workers and their union leaders about the hazards of tobacco chewing . I discovered I had public speaking skills. I found out my Delhi Hindi made me stand apart and people heard me . I found out it was worth braving the fisher women's loaded , wet baskets in the trains in my starched cotton sprees as it gave me  style and dignity . Tools I used to convince Labour Officers and CEOs alike to take me seriously . 

I brought home all the books on cancer I found in the British Council library . I haunted the corridors of Tata Hospital and when I was deputed to help set up up their Preventive Oncology Department I knew I had arrived at an important turning point in my , yes , I say it boldly , my career . Tata Hospital , the seat of ultimate learning in cancer care also brought me into the orbit of Palliative Care . 

And then came some testing times in that career . Maybe it was burn out . Perhaps , after 15 years I had reached a plateau with no more peaks to scale . I moved on . And away from cancer . To my passion , books . I became Store Manager of one of the iconic bookstores in Bombay . I began learning all over again . At 50 years of age . I learnt about Retail and running a tight ship , I learnt Back Office work , I faced  a computer and understood what Reconciliation was all about . All I had when I took up that job was what you would call Product Knowledge . I was an avid reader . I loved going to the store everyday and meeting my readers and selling them books . Recommending the best , making them best sellers , reading to the children , welcoming the authors . I was hiding from cancer and some of the hurt it had brought me . 

Then I moved on again , and took up an offer to work with a dear journalist friend who needed someone to help him with a show he was presenting on Doordarshan . 
I did everything possible ...from interviewing guests on the show to voice overs to editing to what have you . What an experience that was. More honing of skills . And then cancer called me again . And I could not refuse . And I began all over again . Set up an office , peopled it with the best , trained them and we were ready to offer the best to thousands of patients who were our responsibility . 

Today , another fifteen years on , at 65 I am still learning . Support Groups and Patient Workshops , setting up a Trust , working with the Government departments to obtain tax benefits ; it is never ending - and so rewarding . 

Never lose the the desire to learn . Do not be afraid of what lies ahead . Never stop being hungry for more .  I guess this mantra has kept me going .  

Saturday, March 11, 2017

World Glaucoma Awareness Week 12-19 March 2017

Glaucoma is incurable and lost vision cannot be restored . Early diagnosis is the only key to save and preserve your eyesight. 

I was diagnosed with Glaucoma six years ago ; after I had lost almost all my vision in one eye and the other fast following suit. If I had gone for a preventive check up even a year before that I could have saved most of the vision I have lost . 

This is because loss of sight in Glaucoma usually happens very slowly, over time and until the later stages of the disease may not affect vision at all. 

All the more reason to raise awareness of what is rightly called The Silent Thief of Sight - the second most common cause of blindness in the world after cataract and the leading cause of irreversible sight loss.

Coming under the High Risk scanner are senior citizens and the 40+ age group .

I was 59 when I was diagnosed . I have had three surgeries and both my eyes are affected . My mother was 60 when she was diagnosed. Yes, Glaucoma is hereditary but its onset can also be because of existing conditions like diabetes or just advancing age. 

It is vital that Preventive and Early Detection measures should be part of one's mandatory health check up .

It's World Glaucoma Week ( 12th to 19th March 2017) and a good time as any to get a full eye examination done by a qualified opthalmologist if you are over the age of 40. Make sure the eyes are dilated and then examined. Glaucoma is called the silent thief because it has no symptoms in the early stages and can have affected much of your optic nerve permanently before you notice any visual problems. Please also try and influence others to get a proper eye examination especially those who have little education and little awareness like your driver or domestic help and workers under your care. In India there is no compulsory eye tresting for driving licenses and this can be a safety hazard.  

The condition affects almost 70 million people worldwide, of which it is possible over a tenth have lost their sight completely. Both raising awareness as also spreading the important health message that will ensure people go for regular eye tests and monitor their eye health will help detect glaucoma earlier. Early detection and treatment are the only keys to preventing vision loss from Glaucoma. 

What is Glaucoma :

" It is the name for a group of eye conditions that cause sight loss due to damage to the optic nerve. This is the specialised cable of nerves that is responsible for sending signals from the eye to the brain. In glaucoma, high eye pressure plays a role in damaging the delicate nerve fibres of the optic nerve. When a significant number of nerve fibres are damaged, blind spots develop in the field of vision. Once nerve damage and visual loss occur, it is permanent. Most people don’t notice these blind areas until much of the optic nerve damage has already occurred. If the entire nerve is destroyed, blindness results.

It’s often (but not always) linked to high pressure in the eye. Healthy eyes hold their shape using fluid (aqueous humour) in the middle part of the eye and it stays at the right pressure because some drains away as more is made. If the eye can’t drain well enough, pressure inside the eye will rise. This damages the cells that together form the optic nerve.

If glaucoma is detected early, treatment with eyes drops to lower pressure can prevent sight loss. If left untreated glaucoma causes progressive sight lost that is irreversible. It is called the silent thief of sight – around half of the people with glaucoma are unaware of it. " 

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.