By Deron Hamel
A new book compiled and illustrated by U.S. filmmaker Louis Stanislaw is a collection of in-depth, reflective essays about what it’s like to live with epilepsy, told by people who have the condition.
The book, Voices From the Heart: Lifting the Veil on Epilepsy, contains more than 30 first-hand accounts of the struggles people living with seizure disorders face, how the condition impacts their lives and how they have coped with having a seizure disorder.
Stanislaw has lived with epilepsy his whole life. On his website, Stanislaw says living with epilepsy made him feel “isolated” from others when he was growing up. But once he started talking about living with epilepsy, he felt better.
“I never wanted to talk about (living with epilepsy) with anyone outside my family until I went to college, where I made a few good friends,” he says. “When I did confide in them, and they accepted me just as I am, I felt an enormous sense of relief.”
Since completing college, Stanislaw has been dedicated to helping other people tell their stories about living with epilepsy.
Voices From the Heart is the second project Stanislaw has created to shine light on how epilepsy affects people. In 2013, he wrote and directed On the Edge, a documentary about the painful truths, misunderstandings and difficulties of living with epilepsy at every turn; from family life and school to leaving home and starting a career and forming lasting bonds.
Epilepsy Ontario hosted the Canadian premiere of On the Edge in Toronto in November 2013.
Like Voices From the Heart, On the Edge is a collection of personal stories from people living with seizure disorders.
Perhaps most importantly, the book and film put faces to the condition, which is meant to inject a better sense of empathy into those reading the book or watching the documentary.
Voices From the Heart has received critical acclaim.
“Voices From the Heart will inspire, stretch and move you in your own life as you touch in these pages the courage and conviction of people with epilepsy and their families,” writes Ronald Heifetz, founder of the Center for Public Leadership at Harvard’s John F. Kennedy School of Government.
“Many of us struggle with the reality that we live in a world beyond our control, and we can learn profound lessons about our own lives from people who live and work with this reality every day.”
If you would like more information about Voices From the Heart, including details on how to order a copy, please click here.
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