Book’s goal is to educate the public about epilepsy
Audrionna Hill, 12, and Satchel Cundiff, 9, have never met, but their paths will soon converge in a book from the Epilepsy Foundation of Southeast Tennessee.
Satchel was diagnosed with epilepsy two years ago, and Audrionna has watched her mother, Tawanna Hill, struggle to manage her epilepsy for almost five years. Although their stories are different, they will share lead roles in the coloring book, “A Day in the Life,” which will be used to spread epilepsy awareness.
“The main purpose of the book is to reduce fear, stigma and ignorance when it comes to epilepsy,” said Shawnessey Cargile, an epilepsy educator for the foundation. “The areas that we’re most targeting are schools, churches and community organizations that care for children, because they’re at the highest risk for epilepsy.”
More than 5 million people in the United States have a history of epilepsy, but like many brain disorders, epilepsy is shrouded by mystery and misconception.
Epilepsy’s hallmark is seizures, which can be caused by stroke, brain tumors, head injuries or infections, but often the cause is unknown. The type, severity and frequency of seizures vary greatly between individuals, and although epilepsy and seizures can happen at any age, they are more common in young children and older adults.
For several years, Cargile has used another book to provide free education about epilepsy. In that process, he met Satchel and Audrionna, “whose stories really stood out,” he said, prompting the foundation to update the book and feature local kids from diverse backgrounds.
The new book, which is scheduled for publication later this summer, is created through a collaboration between the foundation, two local artists — Jasmine Burson and Fernando Barrientos — and two local writers — Ray Zimmerman and Mark Anderson — who volunteered their time get to know the children and bring their stories to life.
Zimmerman, a poet and author writing Audrionna’s part of the book, said conveying her story has been both challenging and a learning experience.
“I knew very little about epilepsy before taking on this project,” Zimmerman said. “I knew there were different types of seizures, but I didn’t really know the full spectrum of that, or the ways in which those create struggle for the persons experiencing them and the people close to them.”
Jeni Yielding, Satchel’s mom, said it took Satchel having several seizures at school before school officials decided they needed some education for themselves and the students.
“If you don’t talk about things and get it out for kids, they’re scared of it, and the fear is what makes it hard. You wouldn’t believe how many of them thought it was contagious,” she said. “I think it just made a big difference, because the kids could look at the coloring book and go home and process it.”
Burson, who’s illustrating Audrionna’s character, said she hopes other children will be inspired by the real-life characters in the book.
“A child might not necessarily know what’s going on, but with Audrionna, she goes ahead and takes initiative. She’s an incredibly strong little girl,” Burson said. “While this is a book about people with epilepsy, it’s also a book about how to help handle situations.”
The book ends with the two characters meeting at a baseball game, and on June 23 Audrionna and Satchel will meet at the Chattanooga Lookouts game for Superheroes Strikeout Epilepsy Night, where they will join the artists and authors to throw out the first pitches.