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| 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!
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| Usha Kishore |
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!
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 clich├й; 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.
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