Calling out myth, taboo shrouding epilepsy
Award-winning author Preeti Singh has come up with her fourth book ‘Of Epilepsy Butterflies: Flying Beyond Stigmas’, which seeks to initiate an open conversation about the tabooed medical condition.
The book was due for a physical launch on the occasion of Epilepsy Awareness Day, also known as Purple Day, on Friday. However, the event got cancelled after a government order in the wake of increasing coronavirus cases in Punjab.
The book, which was launched virtually in November 2020, is an anthology of testimonies, fictional stories, and poems penned by patients’ care-givers, providing gestalt understanding of the condition, which is still stigmatised.
A patient herself, Singh, has been suffering epileptic seizures since the age of two after being dropped by a nurse.
“How many people know that epilepsy is vernacularly called mirgi? Patients more often than not hide their condition fearing that nobody will marry them or hire them if their illness is disclosed. This is a far-cry from how cancer and diabetes patients are treated. One in every 26 people have the disease but very few confess to having the condition,” she says.
The book, as its title suggests, urges patients to come out of the shell they have burrowed in after being unfairly snubbed by the society.
Singh, practices what she preaches. She had walked out of a 14-year marriage along with her daughter. “I wanted to live life on my own terms,” she says.
Singh has interviewed eight epileptic warriors, including an army officer and a Marathi actor, about their struggles.
While researching for the book, she diligently and painstakingly verified the authenticity of each interviewee to weed of those merely seeking the spotlight.
Her fictional stories also include romances. Each story deals with some aspect of the disease, the effect of alcohol, disco-lights and overdose to raise awareness while also engaging the readers in the plot.
It also includes a chapter penned by her daughter describing Singh’s personal growth over the years.
Singh also writes about the challenges she faced, including almost being raped while having a seizure.
Singh has a helpline number 9872340169 and an email id email@example.com to counsel fellow patients. She also runs a Facebook page: ‘Epilepsy Champs of Chandigarh’.