Friday, April 30, 2021

Of Epilepsy Butterflies: Flying beyond stigmas by Preeti Singh (Book Review: 4.5*/5) !!!


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.




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