In her new book, Of Epilepsy Butterflies: Flying Beyond Stigmas, PREETI SINGH herself a person with epilepsy (PWE) since the age of two, raises awareness about the ailment and inspires other epileptics to become epilepsy warriors and not give in to despair
Writing another book after publishing three fiction titles was not on my agenda; but the loss of a friend’s son due to SUDEP (Sudden Unexpected Death in Epilepsy) made me change my mind.
An epileptic since the age of two and now 49 years old, I have struggled for acceptance from people and society all my life. If people can openly talk about cancer, AIDS, diabetes and other ailments, why is epilepsy (MIRGEE in Hindi) still considered a taboo subject in our society?
The myths and misunderstandings are so deep rooted that often we are considered untouchables! The lack of awareness is astounding…to the extent that well educated people do not know that epilepsy and MIRGEE is the same medical condition!
My book aptly titled, Of Epilepsy Butterflies: Flying Beyond Stigmas, is just one of the voices of the many, who can’t express their suppressed angst. Most of them who can’t write have called me and told me their stories and I have penned them down, with their permission; some with their names mentioned while others feature anonymously, as most people with epilepsy are still not ready to come out of the closet.
It struck me that one fine day I could also never wake up or die suddenly and leave this earth with my family being so unaware about epilepsy; so better not waste a single moment! Being a PWE myself, I had been unaware of so many facts since long; so there may be countless like me, who are yet living in age old myths and need to be made aware and woken up to the reality.
Though this book is mainly for persons with epilepsy, but anyone facing health disabilities and social discrimination, would feel connected after going through the pages within.
My few chosen gems in the book are people with epilepsy, who have been brave to come out in the open and share their life, their struggles, their each fall, their every victory and offered their motivational guidance; so you would also feel inspired, if they can…why not me?
I have also written a few fictional inspirational short stories to open your eyes about the myths surrounding epilepsy. With medical inputs from a renowned neurologist serving in the Indian Army, each fictional story or anecdote in this book has been medically validated, yet made an interesting read, especially for today’s generation.
As you embark on this path to help yourself or someone you know who has epilepsy, or if you come across a PWE suffering a seizure anywhere, I request you to please help him/her. Please be kind not to turn a blind eye and walk away. Today it’s them; tomorrow it could be you, as epilepsy can happen to anyone, anytime and anywhere! So be kind, helpful and most importantly….humane.
Hold my hand as I help you follow some First Aid Tips.
1. If as an epileptic patient, you ever feel an aura, immediately sit down at a safe place and call someone you know.
2. When a seizure occurs on your loved one, please note the time and duration of the seizure.
3. Make sure the patient has something cushioned under their head like a purse, shawl, jacket or any soft clothing that can be used as a cushion under their head, so when they undergo the convulsions, they do not injure themselves further.
4. Please roll the PWE on one side so that the saliva can come out of the mouth and he/she does not swallow it during the seizure. Swallowing the saliva during a seizure can choke the patient, which can be fatal without medical help immediately available.
5. There are a lot of myths in India on epilepsy ― smelling an onion or a leather shoe, inserting keys in the mouth during a seizure will instantly cease it! This is absolutely untrue. Please get instant medical help or if you can’t, at least administer the above first aid, like a good, kind human being.
6. After a seizure, usually the PWE feels a lot of pain and weakness and falls into deep slumber. Let the PWE sleep and request people around to give some air. Try to educate the unaware public as much as you can about epilepsy first aid tips, so next time they can help someone in need.
7. PWE should wear identification badges whenever they step out of their house or travel long distances. Since a seizure can happen anytime and anywhere, an ID badge should have the address, phone number of their family members, their blood group, their doctor’s name and address and any other vital details. This would help in contacting a family member.
8. PWE should never drive ever. It can be fatal, if there is a small absence attack, an aura, or a slight tremor for even a second on the road in heavy traffic. Not only the PWE but also a pedestrian or another motorist’s life can be endangered.
9. Never give water to a PWE to drink during a seizure as it may aggravate the situation. Instead, you can use cotton to sponge the dry lips of the epilepetic.
Last but not the least, we people with epilepsy, need your love, acceptance and support which can be the best medicine for us to heal back to normalcy after a seizure. Please don’t treat us like untouchables after a seizure, as we don’t need your sympathy to stand up again after a fall; just your one hand to steady us will suffice and we will be ready to take on the world again and fight against all odds, like true epilepsy warriors!
The Epilepsy Warriors Featured in the Book
Colonel Bhupendra Dhapade
Still serving the Indian Army with full vigour, Colonel Bhupendra Dhapade is currently posted at Bhatinda and has taken over his new post with his never ending energy spurred by music.
Hailing from Hyderabad, Jitendra Gunti is the founder of a voluntary organisation called EASE (Epilepsy Awareness and Social Empowerment Society ) where he organizes events, conferences and meetings to create awareness in society about epilepsy.
Popularly known as the ‘Epilepsy Warrior Queen’ on most social media platforms, Ketaki Chitale is a renowned Marathi television actress who spreads epilepsy awareness through her own YouTube channel.
An enterprising, young Delhite, Vinay Jani has made quite a name for himself globally by earning four super Randonneur (long distance cycling) Titles and also took part in the Paris-Brest-Paris 2019 Edition.
Being an active volunteer of the Samman Association at Mumbai, Rahul Karandikar wishes to one day start an Employment Placement Consultancy for epileptics, so that they don’t face the stigma of rejection each time they apply for a job.
After being facilitated with the ‘Outstanding Person With Epilepsy Award’ in Australia, Kavita Shanbhag now successfully runs ChildRaise.com, a free internet web portal to provide resources, awareness and support to children with special needs and disabilities.
A young bride Priyaneet Singh is flying high with positivity by empowering lesser privileged women on how to create a niche for themselves in society and help them get their legal rights.
He truly reached the clouds when his name figured in the merit list of one of Punjab’s finest medical colleges. Vijay Goswami has gone beyond all the barriers of all stigmas to be a fine, young budding doctor.
Diagnosed with epilepsy since the age of two, Preeti Singh, an award-winning author, is also the author of this book on epilepsy.
(Featured Image – Top Row, Left to Right, Colonel Bhupendra Dhapade, Jitendra Gunti, Ketaki Chitale; Middle Row, Left to Right, Vinay Jani, Rahul Karandikar, Kavita Shanbhag; Bottom Row, Left to Right, Priyaneet Singh, Vijay Goswami, Preeti Singh)
Diagnosed with epilepsy since the age of two, Preeti Singh is an award-winning author, who has overcome great challenges to live life on her own terms. Undeterred, she motivates others to come out of their closet and shed their insecurities.
Of Epilepsy Butterflies: Flying Beyond Stigmas has been published by Vitasta Publishing Private Limited.
I have a cousin who is epileptic and all of us when we were kids were educated.how to take care of her if she had a seizure.
My uncle and aunt both above 80 now still take care of her. She couldn’t complete education due to her medical condition. A diploma in home science did help her a bit and we would relish the food made by her.
Salute to my uncle and aunt who still take care of her and make her feel loved .
Hats off to you guys and your life and the troubles you all have faced and yet risen so high ….