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.
Out now! You can order on Amazon.
Read an excerpt at : MeharaLit.
Praise for A Roll of the Dice:
‘A profoundly moving and uplifting book about the triumphant survival of life against all odds. It’ll go straight into your heart and expand its capacity for feeling. Read it and be changed.’ Neel Mukherjee
‘Powerful, moving, beautifully observed and wonderfully sensitive. It mines the depths and heights of human love and suffering and is perceptive about family dynamics, the weight of trauma and comfort of family support. The steady accretion of detail and emotion are exceptionally skilful; the book creeps up on you and steals your heart. I couldn’t stop reading once I started. I particularly like the observations of daily life in cities –the textured evocation of having to walk and talk, live, love and work in the ‘ordinary’ world –while going through operatic swings of emotion at the same time. Mona Dash is a powerful, important and fearlessly honest new voice – capable of looking the deepest suffering and the greatest joy full in the face.’ Bidisha
‘A writer of rare bravery, putting forward a manifesto against the tropes and delighting in subverting expectations.’ Roopa Farooki
‘A deeply affecting book, touching and beautifully rendered. A powerful read from an exciting new voice.’ Irenosen Okojie
‘A beautiful depiction of heartbreak and resilience. This memoir will open your eyes whilst also filling them with tears.’ Mahsuda Snaith
‘I wrote the Bubble Boy from the innocent and unaware perspective of an 11 year old boy with SCID. And I had an adventure…we all had a fictional adventure. SCID is real, full of heartache, suffering and frustration of search for help and cure. Mona Dash takes us on a journey that I could only imagine. Beautifully written, honestly written. I am a writer of fiction. This is the real thing.’ Stewart Foster (via Twitter)
A Roll Of The Dice is a recollection of a ten-year journey by Mona into the world of genetic medicine starting from the beautiful plains of India, to the bustling city of London with myriads of fear, loss, grief, anger, love and patience which culminates into a test of faith and motherhood.
Told from the author’s point of view, the opening section lurches the reader straight into a tale of trepidation and auras of death. It explicitly narrates the life of an Indian woman, in this case, Mona, which revolves around a budding career and a blissful marriage until she decides to add a baby to her schedule and life humbles her with a child with SCID, a rare genetic disorder characterized by disturbed development of T and B cells. The outcome of this episode plunges her into a tunnel of protracted fear of conception, the possibility of having an XY child and the urgent need to flee a homeland that then, was no place for a mother who is a threat to her own progeny.
Thematically, the book explores medicine to a greater extent, then migration, family love, support, beliefs and travel. It evokes bouts of bittersweet emotions in no particular order like the aftermath of having little innocents that come with pains, the joy of having dual citizenship, the relief found in family and friendship and the assurance that comes with spiritual devotion.
The writing style, the vivid description of places, and in-depth presentation of medical practices in this book reflect an uninhibited rendering of a personal experience without half-truths, which leaves nothing to doubt and this, I found remarkable and courageous.
Some medical jargon such as CVS, bubble babies, SCID, deepest pool, PPROM stuck with me. Some lines like ‘a movie style fainting fit…,’ ‘around you the entire world is producing babies…,’ made me smile. Visiting of temples and lighting of candles in Notre Dame, made me wonder how far desperation can take one; and towards the end, I wished I could read more about Mister Smith and Dr. Thomas.
I wouldn’t stop at recommending this book to women battling with infertility, mothers of SCID children or those battling other genetic disorders but also to everyone because there are things we can’t ignore: the truth about the universe, inadequate health facilities in most countries, the need to acknowledge peoples’ pains and be grateful for one thing, being normal.
By Akuchidinma Raymonda M., Nigerian fiction writer and current Senior Editor, Media and Creative Director at MeharaLit.
Mona Dash’s debut memoir, A Roll of the Dice, is an odyssey of an invincible mother who, despite her best efforts, loses her firstborn son diagnosed with SCID (severe combined immunodeficiency). The etiology of this disease is perhaps not known yet, and, therefore, the treatment is not possible in India’s underdeveloped medical system. The death of her son proves to be a cornerstone of a decisive change in her life and perhaps the genesis of this book. Knowing that if she bears a child again, her next child may well be inflicted with the same disease, her intense desire to be prepared leads her to London, where she procures a job and makes a new home.
A Roll of the Dice is a story of the glorious transformation of a woman; her sense of unassimilable loss and abiding hopes go hand in hand throughout the book. Although the void of her first lost child reverberates so often, her astute circumspection, conjectural observations, and unwavering trust propel her toward becoming a mother again. Dash’s story is emblematic of life’s unpredictability, darting back and forth between sudden delightfulness and creeping despair.
Divided into six sections with an introduction by Bobby Gasper, a professor of pediatrics and immunology, the book describes SCID in a meticulous fashion. At some instances, the memoir reads like a drab manual of medical science dealing with diseases and prognoses. However, the simple narrative tapestry of the book is spun around the medical terms sprinkled throughout its pages. As a hawk-eyed observer, Dash captures her surroundings with detailed description as well as the moments of her emotional stasis that situate the reader in the poignant world she creates.
The book’s evocative vignettes carry soul-stirring descriptions of the visceral emotions of a mother for her child. As she unspools her own personal experiences, however, she articulates a woman’s crystallized determination to struggle through the precariousness of life.
By Mohammad Farhan, Aligarh Muslim University, in World Literature Today.
Three poems translated into Chinese and published in The World Poets Quarterly February Volume 93, Feb 2019
A certain way (and other two poems)
As an immigrant,
I am expected to behave in a way
a certain way.
Colour the walls with turmeric,
fill my soul with lament
for the land whose shores I have left
to become richer economically
Fold oil into long black hair,
dream the stars of the eastern skies,
in this land, the land I call my own,
but never to be my own.
Wrapped in sarees, sapphire blue, sindoor red,
meant to be nostalgic about the
monsoon spray dazzling my eyes
calming my burning skin.
Instead, my mind
soothed by the nourishing cool green
of the land I live in,
energised by the glowing orange sun
of the land I come from,
decorates ice cubes with spice.
With silver anklets, red stilettoes,
the shortest, blackest dress,
I sip prosecco, spear olives expertly,
pile plates with rice and chicken curry
while in the garden
lavender, jasmine, clematis, and marigold,
spread their roots, dance their petals
into the pale grey wet skies
and the searing sunshine.
Uproot, grow, take root
parallel truths, a little of this,
a little of that.
For an immigrant,
there is no certain way to be.
May We Borrow Your Country is a contemporary collection of stories and poems that looks at dislocation and displacement with sympathy, tolerance and humour. It is peopled by courageous, poignant, eccentric individuals who cross borders, accommodate to new cultures and try to establish an identity in a new place. In the process, they encounter different versions of themselves, like reflections in a room of trick mirrors.
May We Borrow Your Country was launched in Waterstones Gower Street on the 26th of January 2019. More than a hundred tickets were sold, and bookings were actually stopped a couple of days before the event. Joining The Whole Kahani, on the panel were Lynn Michell, publisher, Linen Press, and Preti Taneja, author of We That Are Young. Preti has written the foreword to May We Borrow Your Country and had interesting questions for the writers. Lynn had her own questions, and it was an interactive audience who listened, asked questions, and cheered us. Rosie Beaumont-Thomas, the events manager concluded the event by mentioning Waterstones Gower Street will have to try hard to match the fantastic evening and huge turnout.
An almost tropical rain arrives
I watch from the window.
Quiet roads, quieter cars.
The almost tropical rain
adorns the hanging planters.
Colourful flowers, petunias, azaleas, fuchsias
but fragrance less,
so the rain awakens nothing, hidden.
There’s even a hint of hailstones in today’s rain.
But, to be truly tropical you
need to emerge from the hunger of heat
the acridity of drought.
You need to rise deep from ponds brimming with lotuses
form clouds that spray down at will, lustily.
An almost tropical thunder today.
But to be truly tropical you
need to have been conceived in despair
spawned in hunger.
You need to have it in your belly.
The rain beats down today
it is not the same.