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The fairy tale of life

November 12, 2012

“Heaven’s morning breaks and earth’s vain shadows flee;
In life, in death, O Lord, abide with me.”
- Henry Francis Lyte

Mimi (my mother’s sister)’s health had been silently deteriorating from inside during the last two months. Medical treatment came with her daily bread all throughout her life, and probably that’s why I had initially not been much alarmed by her failing health as narrated by my mother, who had been her guide through thick and thin, especially after her trip to Thailand. But none of us, not even she herself, expected it to end all when it did. A dear one’s death, of course is never easy to accept. When her lifeless body was brought home for everyone to pay their respects, I felt a lump in my throat, but I knew that now she rests beneath the heavenly skies.

I tried writing about her life because I trust her life deserves to be told but I soon gathered that the profundity of the agony that was her life cannot be appreciated nor valued by simple narration. So I look at it from a different angle – investigating how altered her life and everyone’s around her would be if she was not so ill fated to have been a victim of immuno-suppressive disease xeroderma pigmentosum – the lifelong battle to which she finally had to succumb to.


I have analysed many people, including my father, who had a rich, memorable childhood with cousins from the paternal as well as the maternal side. If the heavens were sympathetic enough to grant Mimi a ‘normal’ life, she might have had her own family with a husband, children and her own self-sustaining life and I would probably have a few cousins of my own. Maybe one of them would also share my passion for computer science and we could share ideas just like my father and mother do with their cousins. Bhaiphota and Bijoya Dashami reunions would be days of excitement, fun and frolic and the house would be full of people spreading enjoyment – it would be as charming as flowers blooming on a country churchyard. Children running around, mother and Mimi engaged in organising the Bijoya dinner party and my father and Mesho (as Mimi’s husband would be called) sitting at the drawing room sofa discussing matters that we young people consider boring is a most common sight at every mamabari – but not mine.

I have seen my Thamma going often to her brothers’ and sisters’ places to spend an evening, a day or sometimes even a week just for a change of air. Picturing my mother going to my Mesho’s house to spend a day or two, or to help Mimi shop for the Pujo, or help her decide the wedding dress for Mimi’s eldest daughter is what I would pray to God for my mother because just like any other sibling, she deserves such joys. My mother and Mimi might also together have arranged a trip for my grandparents to Thailand, instead of just my mother. Mimi, if her health had permitted, could’ve turned out to be a professor of Geography, or might have worked at a corporate office and the two sisters could collaborate and share their work experiences with each other – as I have noticed my father does with his siblings. But that was what one can have hoped – the truth is far from it.

Having all children successful in their own lives, managing their own family, and living happily is what every parent wants to see. I remember Dadu had said, after my uncle got married and settled down, that he had nothing else to worry about in his life. Seeing the realisation of the well wishes of a parent for the eldest child was never to be so for my grandparents. Seeing the excitement that we as children spark in my grandparents’ faces, I can hardly envision how fulfilling it would make them feel to have four or five grandchildren from both their daughters gather around and listen to the stories of mythical creatures and scientific discoveries of the past that they told me when I was a child. My grandfather would have more grandchildren to distribute the priceless fruits of his rooftop garden while my grandmother would probably have a granddaughter to teach how to wear a saree and how to look like a princess. If all of that were to happen, Dadua and Dida would, like Dadu, have nothing else to worry about for the rest of their lives.

The most common things one associates life with – a job, professional life, marriage, family and children of one’s own – were way out of reach for her. If the stars hadn’t given her such a painful life, then like my mother, even she would have, above all, her own wing of the family tree. Maybe in her college days, she might even have met her soul mate, who she would later marry and have a love story to tell her grandchildren! She might also have perfected her praiseworthy skills in embroidery to run a small scale successful business. In short, she would have a world of her own.


Words are incapable to describe how spectacularly different Mimi’s life would be if her well-being was guaranteed. Although she survived for 48 years, much unlike the doctors’ predictions when she was first diagnosed with the disease, it deprived her of the basic joys of life. Apart from the rewards of an average life, she would also be happily ignorant of a disease called Xeroderma Pigmentosa and blissfully unfamiliar with eye institutes like the L. V. Prasad Eye Institute in Hyderabad that one would go to for treating tumours in eyes and be relieved of the excruciating pain that is accompanied.

Imagination, once unleashed, is in its nature to run beyond the boundaries of reality. Mimi’s fate was such that at the age two years, the stars decided that she would be deprived of the things one would expect to have in life and was left alone, diseased, with a crippled vision. Instead of children, she had medicines – steroids for her eyes that would have to be applied every fifteen minutes all throughout the day and night like a new born baby needs attention all through the day; instead of her own family, she had appointments with doctors; in place of a job, she had corneal grafting in her eyes in multiple occasions; instead of her own wedding, she missed some of her younger sister’s wedding ceremonies because of the critical condition of her eyes. Xeroderma pigmentosum is said to occur in one individual for every 250,000 and on top of that, it is roughly six times more common in Japanese people than in other groups. It has been said with truth that fate is never without a sense of irony.

What I have illustrated here is not the life of a queen, but one that every common man lives and takes for granted. Even an ordinary life was too good to be true for her, like a fairy tale – one she might only dream of, but never make real. But even if we do not consider the fruits of normal life, she had to fight for the very things that we take for granted from birth – her eyesight became steadily weaker year after year. There was a time when she exclaimed with joy that she could make out if there was a car a few feet ahead of her and she considered that day to be lucky to have even that little vision. Because the battle that she had to put up with all through her life, she understood the sick and the needy better than anyone else I know. She had always put her best foot forward to help those who needed her even before they could call for help – be it my brother while having a minor surgery, or the poor children of Kathamrita Shangha who were cold and needed warm clothes in winter – she herself went and cared however she could, often transcending her own physical limitations. Sometimes the little things that one do make one great. Her memory will live on through us and her story deserves to be told and listened. But more than that, there’s a lot to learn from her that the Divine Providence taught her – “to give and not to count the cost, to fight and not to heed the wounds, to toil and not to seek for rest, to labour and not to ask for reward”.

I have seen so many people who have so much to be happy about but still mourn the smallest of things that they couldn’t have. The struggle that she knew life to be from the tender age of two years is an example how one who had almost nothing in her life could still be content with it. All her life, in spite of the pain she had a firm belief in the Almighty. Although she was put through what seems almost too much, she never lost her faith, and it was that faith that carried her forward and gave her the will to fight and the zeal to survive. I am left in utter amazement and respect for her as my grandmother narrates how painful her childhood, adolescence and adulthood were. All along, her constant companion was pain. I can vividly recall the last few days of her life in the ICU – the strong odour of antibiotics, medicines and disinfectants or the smell of death as I now call it, made me dizzy but she fought on, with determination in her spirit and to the daze of the doctors, till her last breath for she was born into a world to fight, struggle and return triumphant like the charge of the Light Brigade in the battle of Balaclava in 1854. I feel her life was not a journey, it was a test of her endurance – a test by God Himself to see how long before she breaks – and she never did, she never gave up – not even on her deathbed.

“When can their glory fade?
O the wild charge they made!
All the world wonder’d.”
- Lord Alfred Tennyson