1928th BLOG POST
16th
Book of 2021
It
is always a pleasure getting back to reading an author whom you had read many
years ago. I am talking about Preeti Singh here. I had read her first book in
2012 named “Flirting with Fate” when I was really very new to the reading
world. I had liked that book and given it a good rating of 4 out of 5. It has
taken almost 9 years that I have again got a chance of reading her latest work
named “Of Epilepsy Butterflies” which also comes with a tagline that says
“Flying beyond stigmas”. This is an anthology-kind of a book which has been
compiled very nicely by the authoress. The book is written with a very good
purpose of giving motivation to the people who are affected by epilepsy and
guiding others to not treat PWE (people with epilepsy) as criminals or untouchables.
The book tries its best to break this stigma and taboo from the society.
To
make it easier for everyone to understand, epilepsy is popularly known as
“mirgi” or “mirgi ke daure” in India. Personally, I have never encountered any
PWE in my life hence I didn’t know the problems they have to suffer themselves
as well as the situations their family members have to go through because of
societal approach towards them when they come to know about such patients.
Whenever there is any seizure attack that happens in a public place, the person
is seen differently. People start distancing themselves from the person and
almost boycott him/her. Reading about such stories in this book made my heart
felt so weak and exploited that even when I don’t suffer from it or don’t have
anyone in my family, I could still feel the plight of the people who go through
it.
Preeti
Singh, the authoress, is herself a PWE and has been suffering the disease since
she was 2 years old. She has seen enough in her life because of the continuous
seizure attacks she has been getting since then. She has been very good in
letting us understand through her personal account in one of the chapters in
detail about what she went through at every stage of her life. Her note was so
horrific to read that I couldn’t comprehend what goes in people’s mind to think
ugly for a girl/woman suffering from PWE that they go further to physically
abuse and molest her. She also tells how her beautiful marriage failed just for
this reason as her in-laws couldn’t accept this daily trouble. Her challenge in
school, college, office, relationships, pregnancy etc. makes us understand that
how less educated we are about epilepsy and the people who go through it.
This
anthology includes many personal accounts of people suffering with PWE and how
they conquered it without losing themselves and their willpower with the
challenges and obstacles that comes up with this disease. Ketaki Chitale, the actress, tells us how doctors
misguided her which took her 19 years to accept her condition. Jitendra Gunti's
story is one of the most effective accounts on how he suffered in school due to
his seizure attacks and still being a good student, he ended up failing
regularly till his Master's course. I liked how spirituality helped him accept
his situation. But reading about how an NGO expelled him for being PWE was
really heart-breaking to read.
Harsheen, Preeti Singh’s daughter’s version- of how the authoress used to get seizure
attacks during sleep sounds so scary but the way she handled it knowing that
epilepsy needs to be dealt calmly tells us about the bravery of PWE’s family
members even when they are a child themselves who needs to be taken care of.
All the other accounts are equally impactful and leaves a mark in your thought
process for the kind of life a PWE expects to live and the expectations they
have from us of nothing but support and acceptance.
It
also has few poems and I must tell you, it has really surprised me. Why? It was
such a big realization to understand that PWE is such a big thing for few
people that they went ahead and wrote something with all their heart in the
form of poems. Whenever any person – artistic or non-artistic – thinks of
creating any poem or poetry in their mind – it is only because of something
that has hit them hard and they have a touchy way of expressing themselves
through rhyming sentences in few words. This tells us how lonely PWEs get that
they end up writing about their condition and silently asking Universe to do
something for them so that they can stand again on their feet without any
seizure attacks and move ahead in life like everyone else. All the poems in
this book are of very high quality and it has amazed me because most of them
are written by non-writers.
In
the last 2/3rd part of the book, we get to see the creative side of
Preeti Singh as she has written several short stories based on the subject of
epilepsy itself. I was very sceptic about them in the beginning because after
reading the personal accounts of real people, I thought what difference these
short stories will make in the end. But while reading them I realized author
wanted to make us understand how the conversations happen with PWEs when they
talk to their family members or doctors or people they are trying to make understand
about their situation for acceptance etc. And it has been conveyed appreciably
as I was able to comprehend the mindset of the protagonists in all the stories.
Most of the stories talk about how finding a partner becomes difficult for PWEs
and even if they get one, how their marriage suffers some or the other way
because of their regular worsening situations. All the stories let us know how
the wish to get an understanding and supporting partner becomes a painful
prayer for the PWEs.
Overall,
this book is a very nice attempt in educating all of us about what epilepsy is
and how their patients’ needs to be taken care of. Before this book, I knew
nothing about this subject but now I know so much. I have got acquainted with
so many terms like PWE, AED, EEG test, seizure attacks, SUDEP, Purple Day etc.
which makes me little more confident that whenever I’ll find any epilepsy
patient in my life, I would be able to help them better rather than getting
scared of their fits and attacks. Preeti Singh’s efforts are really commendable
in getting in touch with such inspirational PWEs and compiling such inspiring
and transforming stories. Even a person like me who is away from epilepsy got
so much motivation from them to lead my life courageously irrespective of whatever
situations I may face in life. I give this book 4.5 stars out of 5 and
recommend it to everyone.
Thanks.
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