A ROLL OF THE DICE: a story of loss, love and genetics by Mona Dash
Review: by Candice Louisa Daquin
Genre: Biography/Autobiography
Paperback: 234 pages
Publisher: Linen Press, 2019
Language: English
ISBN: 9781999604639
There are many kinds of books. Some of those most ‘worthy’ if we were to lend value, are those written about endurance and surviving adversity. Only the other day a friend asked me why most praised authors had some kind of adversity associated with their life, or were applauded for their success, given all the obstacles they had to overcome. We discussed how it is surely human nature, to be attracted to those stories of overcoming. Maybe because it resonates with us, maybe because we know how most of us struggle to overcome, and if you can succeed in spite of this, that’s gotta be a story worth hearing.
Wrong or right, we are drawn to resilience and the idea of going forward even as we get held back. Life can be a real challenge and on the one hand there are those who never want to think about challenges, and others who find they inspire them to keep going. Whilst I find value in positive stories without any sight of a challenge I am drawn to the honesty and courage it takes to talk of a difficult time in your life and how you overcame it or how it changed you, because to me anyway, that seems real. And I like real.
Mona Dash has written just such a book. I had just finished Azra Raza’s deeply stirring account of working with childhood cancer, called The First Cell, when I read A ROLL OF THE DICE and I was in the right head space to deeply appreciate the unique challenges of a rare illness, in this case, SCID (Severe Combined Immuno Deficiency) as described in this book. This is very timely, because the entire world has become hyper aware of illness and rare disease as a result of Covid-19 and perhaps because of this, we are more in tune with the value of knowing more about such things. If one makes the argument this is negative, I would answer, how can knowledge ever be anything but beneficial? By understanding more of rare disease, we comprehend why certain decisions are made, what is lacking in research and our medical communities and perhaps take on some social responsibility for furthering medical advancements, rather than believing they could never affect us. Covid-19 has surely proven to us all, none of us are immune from illnesses we had never know about.
If you don’t really appreciate reading about challenging situations involving medical issues, then A ROLL OF THE DICE may not be appreciated by you, but I would urge you to reconsider, because these are situations that aren’t isolated, they could happen to any of us, and compassion and understanding of what these families have to endure, is the very least we can offer as human beings.
Can you imagine having a child who has SCIDs which was once a virtual death sentence, and not living in a country that could even reliably treat your child? Or the ramifications of knowing you carry in your genes, this genetic heritage and any child you have as a result, could be affected or a carrier for their future children? Inherited illnesses are still a taboo subject in so many countries, where the burden of blame goes on the mother, and the associated shame can ruin lives as much as the reality of being a carrier.
In those counties that can work with a SCIDs child, the sheer expense, uncertainty, and extremity of illness, is almost beyond comprehension. Without lobbying and patient advocacy, improvements may have been slower, and it shows the power of a grass-roots movement and how important awareness and education on rare diseases is. The impact of genetic disease on families is often such a private horror, that the rest of the world is blithely unawares. Books like this need to be written to ensure we galvanize behind these rare diseases to bring about world-wide change and not stick our heads in the sand. As we learned from Covid-19, there are many among us, who if they are not personally affected simply do not care about the fates of others. It is my hope there are enough among us who DO care about what others endure, even if we ourselves never do. It is not hard to empathize with suffering when you open your heart and truly care. It’s something we can all relate to on some level.
I have battled a rare illness since I contracted it via a virus in 2017 and understand a little of the horrors of not being diagnosed and the uncertainty of severe illness. But I have no comprehension of what it was like for Mona Dash to experience this as a mother, watching her child suffer. Surely this is the worst agony possible, and the courage it took for Mona to write this book is quite astounding. Mona’s love of her two sons and her fierce determination to not give up, instills in me, a faith in humanity and an awareness of the strength of mothers. As Professor Gaspar says in his introduction, this can teach doctors more about being human and caring toward their patients and the healing power of compassion.
Mona Dash has done the impossible. She has deftly and beautifully authored a book that is both educational, emotional, valuable, and necessary. On a subject most could not have the strength to write about, her own harrowing experiences with pregnancies and SCIDs. Mona had already lost a child years before this second story begins, and known the agonies this brought, she had already gone through this in India losing her first born, and to have the strength to write about this, and help other families as well as educate us on SCIDS and how the cruel realities of economics and your country of birth, play such an important role in survival, is beyond impressive. But impressive is the wrong world, it’s too cavalier for such a heart-wrenching, serious subject. Mona Dash is a truth speaker. Her words have power.
On a personal note, the details are crushing. What Mona recalls of these experiences will stay with me as they have stayed with her, because her ability as a writer to convey the smallest detail, is part of her talent and her mission to truly convey the reality of this condition and what it does to families. The intensity of her experience and how badly others react, builds a picture we want to tear down and reform with education and awareness. The only way we achieve this, is if books like A ROLL OF THE DICE are written by the brave.
As Mona describes, in the Hindu faith a child who has not turned one year old, is not cremated, as with most Hindu rites, but buried. The cold horror of not understanding why her child could not be cremated, is but one example of the wasteland Mona had to walk through as a grieving mother. Mona Dash is also an exquisite writer, which of course, seems at odds with the story she is telling, but it is through her ability as a writer she is able to convey this difficult story, with lasting grace, whilst not losing any of its momentum. Only a true writer, can craft an unforgettable story out of tragedy and urge the reader onward even as they want to flee.
My stepmother lost a child to SIDS (Sudden Infant Death Syndrome) and I have always been by-proxy aware of the grief and horror of losing a born child. This is different to miscarriage, which many women have endured, (in no way suggesting this is less awful) because when pregnant we believe, if only the child is born, it will survive. To have a child born healthy (or so we think) and then die, even as we know they are ill, is beyond our reason. To lose a little being who we have brought into this world, has no words. To have another child and not know if they will survive, most of us cannot even comprehend. To write a book about this, I don’t even have words to illustrate what it must take and where the author found her language, other than through her wish to show others what can and does happen, to share this story in a world that often refuses truths because of the sheer horror of them. But there is also a lot more than horror in this book, there is hope, strength, love.
I have read books about loss, grief and illness, that were too overwhelming to get through. A ROLL OF THE DICE is not such a book. Mona Dash has been able to craft this story in such a way the reader is not overwhelmed, which may seem overly generous given it’s her story and she has every right to it, but when authoring a book and expecting others to read, one must consider this, even more so if the subject is harrowing. Just as with Azra Raza’s book The First Cell, Mona has used her skill and knowledge as a writer to achieve this and create a book that is highly readable.
As an Indian woman living now in the UK, Mona also shares a culture many of us find fascinating and intriguing. The emphasis on having a child, even as you have married and are focused on your career, is an age-old problem for women throughout the world at different epochs India is breaking the glass ceiling for its women, but still experiencing depending upon region, many of the issues that have plagued women throughout history, one being the expectations levied upon women and the idea of being able to do ‘everything.’
Mona’s story of her experiences of moving to Calcutta and the challenges she faced in this different culture, help remind us women struggle for a variety of reasons, not least when we they are striving for equality and kept down by social mores. Even if this wasn’t a story about SCIDs and other complications of pregnancy, the book would be a valuable insight into a young woman’s experience in the world of work and her move to another country. I say this, because a good writer, writes multiple layers in their work, and value lies in the entirety but can be broken down into individual strengths as well.
India has a very high bar as far as expectations and as such, women are expected to return to work promptly after having children, which ironically is not the case in some Western countries where women’s roles as mothers are given more time off work. Having immigrated from Europe to America I can appreciate Mona’s experience and her determination to prove herself, and the pressures that cause. I am a believer we need to deemphasize the adage ‘work at any cost’ but I respect that with increasing competition, if you can’t, someone else will, and how much pressure that puts on women especially, when having children, to return to work. A ROLL OF THE DICE also brings up the issues for women, where their work is ‘a second skin’ and how you navigate success with having a family.
A ROLL OF THE DICE also examines the very private musings women have about childbirth and being mothers. The cultural emphasis in all countries, of ‘perfection’ and fitting in immediately, isn’t what many women experience, and yet little is said about C-Section pain, or the difficulty of adjusting to not working or how many do not feel ‘rested’ by being told to rest. These intensely female experiences are maligned because we want to show ‘the best of’ which only puts pressure on women to conform to an ideal that may actually, not exist.
If I were to take the stories of motherhood and adjustment alone, they would stand as a powerful modern testimony to the hypocrisy surrounding the birthing experience and motherhood, and the pressure we put on young women to confirm to often inaccurate ideals. My own mother had a very similar experience, unable to breastfeed, loathing of the traditional tropes of motherhood and its generalized expectations, I am acutely aware this is a layer of pressure women could well do without, and one many of us do not have the courage to talk about. If I had to point to one theme, I found most powerful in A ROLL OF THE DICE it would be this ability Mona Dash has, for drawing the reader in and teaching them truths few of us have the courage to speak.
The vital information that Mona’s parents lost a son at six months of age, did nothing to help doctors discover what was wrong with little Akshyat, and the story of how hard they struggled to find an answer, is testimony to the challenges of rare illnesses and the inability of the medical profession to have accurate answers to many of these phenomena and trying to put pieces of a huge puzzle together to reach a diagnosis. Being told your child is ‘not normal’ and being shamed for how you treated the illness, is something many parents experience even to this day. Mona describes the fury of parents trying to find the right care in a huge country, with multiple bewildering options and then a second chapter in a foreign country, battling anew.
I was deeply moved by the entirety of the book, and the language Mona Dash possesses in abundance to describe intelligently, the fierce unyielding devastation; “Others said, ‘I could never cope with such pain,’ as if one had a choice.” So many lines will stay with me long after this book, this is a book I will recommend many to read, they may wonder why me? But after reading, they too will recommend. “Have you held a baby, dead, in your arms? Do you know how suddenly, in just a few minutes, the soft dimpled limbs become dimensionless and rigid? The breath is sucked out and a woodenness nests in the body. What does lifeless truly mean, do you know?” There are numerous pockets of incredible wisdom and insight throughout this book you’ll never erase, a penetration through suffering, to the very dermis of what life is truly about; “Employers like to see drive and ambition, whether fueled by despair or not.”
Being told a bone marrow transplant in another country is the only solution, and trying to raise $100,000 for this procedure, is the painful reality of many parents of babies with SCIDs. I want to walk you through the rest of this unforgettable story, including infertility and a fight with endometriosis, but that’s not the purpose here. My purpose is to ask you to read this book yourself, because from it, you will gain both humanity and humility and you will be glad for any health you have, and aware, very aware, of how precious health is. How if you do one thing, it should be to not give up, or succumb to despair, but to recognize, within a broken system, there is hope. And within you, there is fortitude for facing what cannot be faced.
“The constant communication with complete strangers, the hope and the goodwill I received from people I had never seen, nor would ever see, shaped my days. That interaction helped me survive.”
“It’s not for us to spurn this life we have been given. Until this soul himself wants to go, until then, we will do our best.”
BIO
Candice Louisa Daquin is Senior Editor at Indie Blu(e) Publishing and a Psychotherapist. Indie Blu(e)’s anthology SMITTEN won finalist in the National Indie Excellence Awards and The Kali Project, a collection of Indian women’s poetry has just published worldwide. Daquin’s poetry is available in most bookstores and she is a long-time animal rights advocate and vegetarian.
BIO
Mona Dash writes fiction & poetry and has won various writing awards. She is a member of The Whole Kahani, a British South Asian Writers’ Collective.
