Award-Winning Filmmaker and Author Draws Creative Inspiration from Older Sister with Epilepsy

By Adam Modzelesky
EpilepsyUSA staff
Posted: November 16, 2005

"I think I'm the perfect documentarian for something like epilepsy because I was two years younger than my sister who had it since birth, and I was there for everything."
-- Garth Stein.

Almost all authors have one thing in common – they write stories centered on what they know intimately.

Seattle-based author Garth Stein grew up with a sister who had epilepsy, so it makes sense that his second novel, How Evan Broke His Head and Other Secrets, focuses on the condition.

But Stein is a man who'll tell it to you straight. Even though he's no stranger to epilepsy, he'd never presume to tell people what it's like to have a seizure. He'd never try to speak knowledgeably about the emotionally and physically draining diagnosis and treatment process. And he wouldn't be caught dead trying to tell someone what it's like to live with the condition on a daily basis.

What he will tell people, however, is how epilepsy affects the family dynamic – what it's like to have someone you deeply care for endure status epilepticus and then undergo epilepsy surgery before your very eyes. Yes, Stein was in the operating room while his older sister, Corey, had surgery in 1991. He even filmed it and had the award-winning documentary, eventually entitled When Your Head's Not a Head, It's a Nut aired on PBS, as well as in Japan.

"I think I'm the perfect documentarian for something like epilepsy because I was two years younger than my sister who had it since birth, and I was there for everything," Stein said. "I wasn't the person with epilepsy, nor was I the parent of a person with epilepsy – those are the people most affected by epilepsy – but I was a witness to the whole thing."

Stein's attitude towards the situation is fitting. Being a writer and filmmaker, Stein is essentially a professional student of human nature. He has made a career out of taking what he's seen and learned from his fellow man – in this case, his sister – and then putting it all on a piece of paper, or on a piece of film.

His childhood was inundated with epilepsy and it basically shaped how he would approach his eventual life's work. He made it a part of his job to teach the world what he spent about 20 years witnessing firsthand – his sister's epilepsy and the affect it had on him and his family.

Growing Up Surrounded by Epilepsy

Stein still remembers, clear as day, the many times he walked in on his sister either during or immediately following a seizure. Be it after one of her art shows, in the backseat of the family car or at her own college graduation ceremony – Stein said he always seemed to be the one who found her in those physical states.

"Whenever she had a generalized seizure that had gone status, I was suddenly in charge, telling people to get ‘that thing' out of her mouth – whatever ‘that thing' happened to be – and to please call an ambulance, or to go find my parents," Stein said.

But Stein wasn't always this knowledgeable. In fact, as a youngster, Stein understood little to nothing about Corey's condition. All he knew was that she had epilepsy, but the facts surrounding it were hazy. What does epilepsy even mean, he would ask himself. He chalks his unawareness up to the fact his parents never really discussed it. Not until he cornered them one day, did he finally get some details.

"I think they tried to do everything they could to normalize childhood," Stein said. "They would tell me anything, but I don't think there was a lot of talking to other people about Corey's epilepsy. That was a recommendation of the doctors', actually. They would tell my parents to only tell the school nurse; don't tell other kids or anything."

This was terribly unfortunate advice for Corey, because, according to Stein, it put her in a difficult position as a kid.

"My mother feels really bad that Corey's upbringing had to be the way it was, whereas nowadays more people are open about epilepsy," Stein added. "Not totally open, of course, but more than it was 30 years ago. But I think she still feels really bad that there was some secrecy involved."

That secrecy could have been a blessing in disguise, however, as it's potentially what led Corey to have epilepsy surgery. She could not be reached to comment for this article, but according to Stein, Corey desperately wanted to leave Seattle for Los Angeles. She thought the location change would help bolster her art career, and not to mention the limitations and secrecy she had been experiencing all her life were growing increasingly tiresome. But the only way her doctors would allow her to leave Seattle is if her seizures became controlled, and after all she had tried, surgery was her best option. So, two days before her 29 th birthday, Corey underwent life-changing brain surgery.

Once Stein learned of Corey's decision to have the operation, the brother in him knew he had to be at his sister's side. But the filmmaker inside him had to ask if he could film the process for posterity. Initially, his parents, Yolanda and Marvin, said no. But Corey, on the other hand, said, "Great, I'd love you to." Eventually, Yolanda and Marvin relented, Stein got permission from the doctors to film the procedure and, then, the exuberant filmmaker set off to make the ultimate home video.

Transcribing Real-life into Film and Literature

When Your Head's Not a Head, It's a Nut follows Corey's surgical process from the initial visits to the doctor, to the post-surgery speech rehabilitation tests. Throughout the film, Stein conducts sporadic interviews with his parents and regular interviews with Corey. Each person reflects on the strife epilepsy has caused members of the family, particularly Corey. Although the family expresses relief over what the surgery can provide – a seizure-free life – they are unable to hide their feelings of anxiety regarding the surgery itself. It is, after all, brain surgery.

"I'm very squeamish about surgery," Stein said. "The idea of a knife piercing the skin freaks me out, so for my sister to have done that is the most incredibly brave thing I could fathom. I couldn't fathom doing what she did. Frankly, had it been me, I would have stood up and said, ‘Nope, sorry, I can't do it. Got to go.'"

Corey went through with it, however, and has been seizure-free ever since, to the best of Stein's knowledge. His camera caught the entire procedure from a glass enclosed room above the operating table. Though he was allowed to stay and watch in-person, he couldn't bring himself to do it. He elected to pass the time in the waiting room with his parents.

"Every hour or so my mother would be like, ‘I wonder if they're doing alright,' and since I was free to come and go, I would go back in and check to make sure nobody was panicking. Then I'd come back out and report what they were doing. That was a big help for my parents because doctors can't do that."

All in all, Stein believes he did a masterful job at accurately portraying his sister in an entertaining and engaging way. Of all his film work, he's most proud of this piece. The fact that it appealed to so many people, and also the fact that it did not stray from him visually displaying the effects epilepsy had on his family, is particularly pleasing to him.

Stein's latest novel, on the other hand, was a completely different beast. It took about five years to write because, according to him, "I got too close to it and I was avoiding certain issues. I was making it too complicated." In fact, he even gave up on it for a period of time.

The book highlights the drama between a 31-year-old Seattle rock star with epilepsy, Evan, and his teenage son, Dean. It also explores the relationship between Evan and his parents. In the book, Stein unveils an eerily similar family dynamic – one of fear, shame, secrecy and hope.

"While the epilepsy and family issues surrounding epilepsy [in the book] can be attributed to Corey, the character of Evan is not Corey," Stein said. "Evan is Evan. And if anything, it's me through the eyes of epilepsy, rather than me saying what Corey would have done."

Overall, Stein believes he was again successful at explaining epilepsy from the perspective of the effects on the family dynamic. Actually, of all the books and plays he's written, he is most pleased with this one.

"[I'm most proud of my written and film work surrounding epilepsy, and] if people say, ‘Hey, you co-produced this short film that won an Academy Award, you must be most proud of that,' I'd say, ‘No, the film I'm most proud of is When Your Head's Not a Head, It's a Nut," Stein said. "I believe it accurately portrays my sister in an entertaining and engaging way, and it really is appealing to people. Therefore, I can't think of it as anything but a success."

In 1991, Stein co-produced the short film The Lunch Date, which nabbed the Oscar for best live-action short. In a Seattle Times article, published June 16, he said, "It's a nice badge to have, but at the same time, I've done a lot of things since then."

A Sister's Lasting Influence

Though they've unfortunately lost the close bond they developed while filming When Your Head's Not a Head, It's a Nut, Stein maintains that Corey's influence and epilepsy experience played a huge role in who he became as a person and as a professional.

"Clearly Corey's situation influenced my work a lot." Stein said. "I did the documentary and now I've done this book.

"My sister set a good example for me," Stein added. "She basically said you don't quit. If you believe in your own talent, you don't quit."

Like everyone, Stein has encountered plenty of challenges during his career. But evidenced by the fact he's gaining in popularity amongst adult audiences, it obvious he has taken what his sister taught him to heart. Believe in yourself, write what you know and never give up hope.

How Evan Broke His Head and Other Secrets can be purchased online at: http://www.amazon.com, and more information on how to order the book can be found at: http://www.sohopress.com/order.html.