yes, yes, I know we come alone go alone but when we come may it be to the sounds of love
and arms roped in an embrace and when we go, and when we go may there be at least one
person next to us, the one who has loved us for an instant even, or someone who has maybe
one lonely night prodded the moon and broken a bit off for you
no one should have to die alone
but you did, and at that instant, what was happening outside? Were there birds in flight, those
tropical ones that disappear, a stroke of colour in a flash or did a half moon rise or did bats
speak to each other in sonic whispers or did a woman murmur in her lover’s ears not now not
you didn’t have to die alone
and what about the others who knew you, the husband, the friend, the lover, lover turned
friend or friend turned lover, where was he? where was anyone? the mother the father the
sisters who are meant to love, the brothers who are meant to protect, the aunts, the uncles
where were they in their worlds not knowing, not knowing, you were slipping away
you cold and alone
and so we think, we wonder asunder, how did it come to this
did you call the moment or did the moment call you
illicit whispers from worlds away cracking the earth into two?
Read The Healing in The Bombay Review
‘A Roll Of The Dice’ is a Non-Fiction finalist for The People’s Book Prize 2020! Mona Dash writes about her 10-year roller-coaster journey from India to England, after her first child is diagnosed with Severe Combined Immunodeficiency (SCID). A story of loss, love, and hope in the face of genetic roulette – told with astounding courage and humour. You, the public, are the judges – You pick the winners of The People’s Book Prize!
Go to https://peoplesbookprize.com/2019-2020-finalists/ to vote for Mona in the Non-Fiction category. Voting closes on April 15th.
As reviewed in the November issue of Confluence:
”Structured into six sections, each exploring a different challenge and interestingly mapped to a corresponding emotion, A Roll of the Dice is a beautiful story, articulated in an honest, heartfelt manner which hooks the reader.
So readers, don’t miss this book, you will love it, you will read it again and again. When your spirits are down, you will learn to believe… there is hope, there is love and there is grace, it is all possible with tremendous will power.
Read it and you will never take your children for granted again.”
I was born old, skin leathery, wrinkled, folded into a million furrows and solid ridges.
When they saw me there was a collective gasp.
My mother’s hand quivered when she reached out to touch me. She didn’t want to, but the maternal instinct is strong and primal. Even a beast likes its young, so my mother learnt to hold me and let me suckle. My dried lips bruised her.
They tried all kinds of remedies to soften my skin. They plastered me with turmeric and soft cream to smoothen it. They used homemade scrubs to polish it. They let me soak in oil but it dribbled through the furrows and dripped.
When I opened my mouth, instead of saying goo ga, and sounds babies are wont to, I rattled off Sanskrit chants – the Gayatri Mantra. ‘Om Bhu Bhavah Svah’– ludicrous when they were trying to teach me to say mama, dada. ‘Row, row, row your boat’ – they sang. Tat Savitur Varenyam, I shouted back. My voice loud, feral, I couldn’t bring it down to the level they wanted. I couldn’t whisper.
They clothed me in silks and ruffles and suits. They tamed my straw hair into oiled plaits. They taught me their alphabet and genteel whispers.
They tried for years. They told me my story over and over again. That babies are not born old, babies are babies because they are new. They have to learn about life, blossom in the rules of society. They told me and they did more. They brought their machines to mould and form me.
Perhaps they succeeded.
Now I wear purples and brocades and my hair is in faultless chignons. My skin is baby smooth and shining with the moisturiser and glimmer sticks they coat me with.
When I try to speak however, it is a whisper. Garbled, my mouth mimics what it was taught. The chants do not form.
But with that, they are happy.
‘A Roll of the Dice is a book that resonates with sadness and joy; altogether an amalgamation of ardent fervor, a mother’s love, and the world’s gentle sway in the direction of good fortune. It is a story of motherhood and resilience and the power of hope. Mona Dash’s memoir narrates her ill-fortune of being a genetic carrier of the Severe Combined Immunodeficiency (SCID) virus – a fact she learned the hard way: losing her first born to it.’ Ghada Ibrahim, Jaggery Lit
‘Mona Dash lost her first child, a boy, to a very rare genetic disease passed from mothers to sons, SCID (severe combined immunodeficiency). Spanning ten years we follow her through the horrowing efforts to find out why her healthy at first baby son is fading. Her descriptions of the last hours of her son will impact deeply any caring person. She is wounded when the hospital personnel told her the boy will be buried, not cremated as is customary for those of her faith, Hindus. She was told babies under one are buried. Of course Mona tries to understand what happened. She had very carefully observed proper procedures, all her check ups had been positive. Why was her baby taken? As the memoir opens she learns the problem.’ Mel U, The Reading Life
‘In A Roll of the Dice, Mona Dash explains the consequences of passing on faulty genes to her two sons – and why she has relied continually on her faith and recital of the Hindu Maha Mrutyunjaya mantra [religious chant]. As the book’s subtitle makes clear, hers is “a story of loss, love and genetics”. For good reason, it is commended by two well-known authors. Neel Mukherjee has said, “It’ll go straight to your heart”, while Bidisha calls it “powerful, important and fearlessly honest”’ Amit Roy, Eastern Eye
‘Mona Dash is an author and poet, and mother of two sons affected by SCID. Her first son died tragically at eight months old; her second son was able to have a successful stem cell transplant. Mona shares her personal journey and opinion on why newborn screening for SCID is so important.’ PID UK – Supporting families affected by primary immunodeficiencies
When did you know you had a story in you that you wanted to share?
Many years ago, when my baby boy became ill, and the word SCID entered my life, I thought, one day, I would write about it to increase awareness about this rare and fatal condition. I was however conscious that I needed to write it with a lot of care and integrity. It couldn’t be a hasty Facebook post or similar! Over the years, so much happened, which I won’t tell you here because it will give away the story but I remember, when my son was born in London, one friend said, ‘This story has all the trappings of a bestseller! You should write it.’
Even then, I hadn’t planned on writing a memoir because I’m a fiction writer and there are so many imaginary characters who want to be written about. It was only years later, as part of my course work for my Masters in Creative Writing, I wrote a short piece of life writing. I intended to send it to a journal, so was struggling to keep it within a word limit. But when we workshopped it, my tutor and classmates were insistent about me writing a full length memoir. ‘But why would anyone want to read a book about me?’ I remember asking. It was my friend, Alan Devey, another author, who replied, ‘Mona, let us be the judge of what we want to read.’ That was the point when I felt convinced that I had a story to share, and a book to write.
Read the full interview in The Asian Writer.
I am a writer of fiction and poetry. When I decided to write this as a memoir, and therefore a true story, there were questions, especially from family. Was it a good idea to bare so much of my personal life? Why not fictionalise it, invent characters, embellish the story?
There were two reasons I didn’t. One is that, as they say, truth is stranger than fiction. Critics would perhaps dismiss my story as improbable and unlikely to happen to one person! And the second, more pressing reason is that I really hope that this memoir – the only one written about SCID and other rare conditions such as PPROM – helps increase awareness of these medical conditions. I hope it makes someone else feel a little less alone. I hope it stresses the importance of new born screening for conditions such as SCID which, as of 2019, is mandatory in all states of America, but not yet in the UK where a pilot scheme is to be introduced this year. Professor Bobby Gaspar, who wrote the Introduction for this book, is leading a nation-wide trial for SCID screening.
Read more at BooksbyWomen.org.
2018 was an exciting year for author Mona Dash. She was on the shortlist for the SI Leeds Literary Prize 2018, for her short story collection, Let us look elsewhere. This was the only short story collection to make the shortlist. Apart from the excitement, making the SI Leeds shortlist meant various reading and networking opportunities. The six shortlisted writers were invited to read at the Rich Mix theatre in an event curated by Roopa Farooki; at the Asian Writer festival with Words of Colour Director Joy Francis; the Southbank Centre Literature festival in an event curated by publisher, editor and critic Ellah Allfrey; and finally in the Awards ceremony at Ilkley Literature festival with author, filmmaker and journalist Bidisha.
The prize provided an excellent platform for Mona to meet other authors and editors. This is good for anyone but especially made a difference to Mona, since later in the year, Linen Press UK, the only independent women’s publisher in the UK signed on her memoir A Roll of the Dice: a story of loss, love and genetics (published on April 22 and available to order on Amazon).
With a foreword by Professor Bobby Gaspar of Great Ormond street, a pioneer in gene therapy. A Roll of the Dice has been described by Linen Press, as a ‘thrilling page turner as well as a haunting journey towards motherhood’.
Read more at Peepal Tree Press.
Viewpoint invites authors to write about anything they want, as long as it’s of interest to readers of Asian Books Blog.
Here, Mona Dash talks about leaving her native India, to save her child’s life. Her son was born with a rare, genetically inheritable disease, SCID (severe combined immuno-deficiency). After his diagnosis, she set out for London so he could be given specialist treatment. She has written about her experiences in the memoir, A Roll of the Dice: a story of loss, love and genetics.
(Update – this published on Monday, April 22 and is now available to order on Amazon).
Mona still lives in London, where she combines motherhood, and work in the technology sector with writing fiction and poetry. Her work includes the novel Untamed Heart, and two collections of poetry, Dawn-drops and A certain way. In 2016, Mona was awarded a poet of excellence award in the upper chamber of the British parliament, the House of Lords. Her work has been widely praised and anthologized. In 2018, she won a competition established to encourage and promote British Asian writers, the Asian writer short story competition, for her short story Formations.
A Roll of the Dice describes the ups-and-downs, the shocks and support, the false starts and real hopes of a mother with a sick child. Mona humanizes the complexities of genetic medicine, and writes her story of genetic roulette without self-pity. Her memoir contains valuable information for couples facing infertility and complicated pregnancies, for parents of premature babies and of children with SCID.
So, over to Mona…
My baby boy was born several years ago in Kolkata, India. He was perfect; healthy, feeding well, big for his age, and even slept all through the night. As a young, career-oriented woman, fresh out of university and armed with an MBA, my worries were simple and pragmatic: how could I get back to my busy job which involved travelling across the globe? How could I regain my pre-pregnancy weight? How could I get the best possible childcare for my baby?
Like most women, these were the practical challenges I expected to face and all I was really prepared for.
At four-and-a-half months of age, my son started becoming unwell with a high fever and an unexplained rash all over his little body. As young parents, we were not prepared for something like this. Indeed, who is? After repeated visits to our paediatrician who was clueless, we visited a string of doctors, each one more highly paid than the other, each one with longer waiting lists and a greater reputation. We ran from pillar to post, desperate to find out what could be wrong. After two whole months of playing tag with doctors, we decided to leave Kolkata and go to a specialist hospital in South India in search of a diagnosis.
Read more at Asian Books Blog.
My piece in this month’s @TheAtlantic: “It was game over for my sort of person in India. We had been so blithe, so unknowing, so insulated from a wider Indian reality that it was as if we had prepared the conditions for our own destruction” https://t.co/AkG9W5JLd2