Usha Kishore interviews Mona Dash on her book, A Roll of the Dice: A Story of Loss, Love and Genetics.

Mona Dash

UK: Call it memoir, call it life-writing, A Roll of the Dice is a powerful book.  It touches the soul and heals the mind.  What made you write this book?

MD: As a writer, one often draws from personal experiences. I have written poems about loss, death, motherhood and my short stories often explore these themes. So, the crucial decision was not whether to write A Roll of the Dice or not, but the genre to  write it in.  

When I was going through all the various medical challenges, one of my sources of strength was reading true stories –about other women facing similar problems and about victory of the human mind over the body’s limitations. Even as a child, I was fascinated with the medical miracle stories I read in the Readers Digest. There is hardly anything written about SCID and even lesser about PPROM – this is the first memoir. So, this book was my own little way of contributing towards self-help for people like me Googling desperately when faced with some insurmountable challenge. It’s my attempt to create awareness about this rare, fascinating genetic condition.

 But even though I had been planning to write the story, I hadn’t imagined it as a full-length book. That came about thanks to my Professor and classmates, during my Masters in Creative Writing.  Having read a piece I wrote for one of the modules, they insisted it needed more space, and the story commanded a readership.

So that’s how my 10,000 word essay became a 70,000 word book!

 

Usha Kishore
UK: The book covers a broad thematic spectrum, among others: a strong auto-biographical element, reflection, spirituality, personal experience, emotional healing and faith.  Which in your opinion is the closest thematic element?

MD: I think it would be faith and personal experience. Every word of the book is true! Every incident described, every emotion, every thought, every person! What I hope has been conveyed is the arc of personal experience, which evolved, from being a student of science, an ambitious, career woman, not a believer in tradition, to someone who just had to believe in the healing power of spirituality. 


UK: The book houses at least a couple of medical conditions: SCID and endometriosis.  You have been very brave to write on these conditions so frankly and without any self-pity.  What gave you the strength?   Could you elaborate on these conditions and the experience of living with them.

MD:  Indeed, I have often been quizzed about the book’s honesty, without the mask of fiction that I usually write. To be honest - I had never written non-fiction before.  It was however my strong feeling that by writing the actual facts, I would do justice not only to myself, but also to all the many women and families who are living through SCID, and many other such medical challenges.

As for living with the conditions, when I first heard of the acronym, SCID, the feeling was akin to having the floor suddenly pulled out from beneath your feet. The shock was intense. But then, as part of the SCID group, I met (virtually of course) so many incredible families, some who have lived through it for generations, some who have lost children, some who have healthy treated children and others, who have children who still need medical care. I was not alone in my journey.

With endometriosis, I was lucky, that I didn’t face any of the symptoms like debilitating pain. However, because there were no symptoms, it was diagnosed quite late, after a lot of damage was done, and it was Grade 3. 

I had to internally reorient myself.  Like everyone else, I’d expected life would be ‘normal,’ but for some of us, this ‘normal’ is different.  Self -pity is not something I wanted to wallow in since there are so many people who are going through a lot of sorrow and pain. So, all we can do is face challenges with dignity, courage and of course, humour.

 

UK: What brought about the title, ‘A Roll of the Dice?’

MD:  It is a term which is often used in the X-SCID world when they explain the odds of having a child who may be born with the condition. X-SCID is one of the forms of SCID when the mother is a carrier and passes on a defective X chromosome to a male child. There is just no way to control the outcome, it all depends on how the dice of genetics is cast. A girl with XX or a boy with XY and if XY, then will it be a good X or bad X? Such a tiny factor, with such huge consequences!

 

UK: I have read this book, a few times.  Each time, I could feel the tears well up in my eyes and hope filling my heart.  Did you think that A Roll of the Dice would affect emotional healing?

MD: Thank you, that’s so gratifying to know!  I hadn’t thought of it as helping anyone else heal. I think, for me it had been about sharing information, giving hope to anyone fighting and trying to overcome the odds. It was all about a struggle.

When one faces a terrible loss, everyone says time heals, and though it is such a cliché; time does dull the sharp edge of pain. But healing comes only when you face the intense pain and then transgress it. Healing is soothing, subtle!   So, I am really touched when someone says they found the book healing. For a writer, this is the greatest gift!

 

UK: The book has an introduction by Prof. Bobby Gaspar of Great Ormond Street Hospital.  What brought about this introduction?

MD: The silent hero in the book is the NHS with its amazing doctors and nurses. It was the publisher’s idea to have a foreword written by a doctor, since this would add to the authenticity and credibility. There are three main doctors mentioned in the book, all three are my Godsent angels!  But since SCID is the very core of the story, it made most sense to ask  Professor  Gaspar. I have huge respect for him, for all the work he does for children and  his research in gene therapy. Professor Gaspar was so amazing with the treatment plans, not to mention his patience with my incessant questioning! We were delighted that he agreed to write the foreword.

 

UK: There is a considerable amount of reflection on life, birth, death and Nirvana in the novel.  Would you agree that your Hindu ethos played a major part in this reflection? As a practising Hindu, I was certainly drawn to the power of the Mrityunjaya Mantra and the Hanuman Chalisa. 

MD: Indeed Usha, you really are into Sanskrit shlokas and Hindi translations! I actually didn’t know any of them.  It was during my pregnancy, that my mother suggested I recite the Hanuman Chalisa and the Maha Mrityunjaya mantra, especially with the latter, the calmness and strength I felt was astonishing.  It became a habit to mentally chant it, whenever worrying thoughts invaded. Words have power, since they have been chanted over the years, and they gather a quiet strength of their own. The vibration of the chant helps!

I have never been an overtly ritualistic or religious person and prefer to say spirituality rather than religion. If one casts aside all the rituals Hinduism is known for, and looks at the very ethos, it is a strong bedrock. I now believe that the soul has its own journey, it takes various forms, various lives.  This belief in something bigger than just one life, helped me heal.  Of course, there is meant to be a sense of fatalism in Hinduism, but I don’t think it is entirely true.  Ultimately, you have to help yourself and to allow God or the Universe to help you. I also have also been influenced by the teachings of the Mother and Shri Aurobindo of Pondicherry, since this is the belief I was raised with as a child.

 

UK: I am really inspired by the epilogue – the reflections on faith.  What made you include this epilogue?

After going through this veritable rollercoaster of a journey, I wanted to end on a note of calmness and stillness.  I wanted to highlight my own learnings, but not in a preachy dos and don’ts manner. I felt this was the best way to write it, and the publisher had commented that ‘it read like a prayer.’ It is also a reminder to myself, that things may not always be ideal, but it is important to remember that ‘light enters through the chinks, to know that your life has to go through the struggle it has chosen.

 

UK: A Roll of the Dice, I would say is a journey into motherhood.  Also, as an immigrant woman, I am struck by your courage and resilience.  What do you say?

MD: Yes indeed, it is a journey, it is about motherhood.  I feel that mothers  are often  portrayed as kind, self-sacrificing, over-emotional. Strength is not associated with a mother, but if you look at the animal world, the mother protects her young, she is a terror if anyone tries to hurt her young.  For me, being strong and nurturing is the focal part of being a mother.

Hence, I think it is very important for women to take responsibility for themselves and have a strong sense of self. To realise that one’s inner essence – the soul – is not the same as the form. Don’t let your feminine form dictate everything you do. The outer form is feminine, our bodies are different from men, we can bear and give birth, but the inside, the core essence, is really about being a human being. A person!  It is important to keep that core essence strong, and not keep falling into the trap of the feminine form, whether in feeling victimised, or using it to your advantage. To assume parallels with the book, while the challenges I faced were because I am a woman, I can say that in reacting to them, I was a human being, the core-essence!

I was always a feminist.  I don’t think motherhood as sometimes thought, is at loggerheads with being a feminist. But I did change from being the ‘corporate person’ I was trained to be, to becoming fluid, open to change and developing a humility that nothing can be taken for granted.

At another level, this is also a story of migration about leaving home and familiarity, to find your feet in a foreign country, looking for solace. I think it helped that the city I came to was London!

 

UK: Behind every successful woman, is a silent supporting man.  Do you count yourself blessed in this count?  

MD: Yes absolutely! My husband is a more patient person than I am. To go through what we did, the commitment had to be mutual.  All through the journey, and the trying pregnancy, he remained resolutely positive. He didn’t research as much, nor did he communicate with a whole network of doctors and other families, but the poignantly crucial thing was his belief in me, which strengthened the belief in myself.

 

UK: What are your upcoming projects?

MD: My short story collection Let us look elsewhere, shortlisted in the SI Leeds literary award in 2018, is being published by Dahlia Publishing UK, next year. I am also working on a new novel. As part of the writers’ collective The Whole Kahani, we are working on our third anthology of short stories.  

 

UK: Thank you for your time.  I knew that A Roll of the Dice was a finalist in the Eyelands Book Award 2020 for the Memoir category, and I have just heard it won!  My very best wishes and congratulations! 

MD: Thank you  and for your insightful questions, Usha.


[More about Mona at (www.monadash.net )
A Roll of the Dice is available on Amazon, Waterstones Online, Barnes and Noble Online

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