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Author hopes to change the narrative of living with epilepsy

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Posted at 7:07 PM, May 25, 2023

CLEVELAND — For Sara Staggs, art imitates life. Her debut novel, Uncontrollable, is out Thursday and is based on her battle with epilepsy.

“There was no adult novel out there where the protagonist had epilepsy,” she said. “So, I said, ‘I’m going to write it and let’s change the narrative.’”

The story follows a woman whose life is derailed by something out of her control.

“I want people to know that it’s OK to talk about epilepsy, and seizure isn’t a dirty word,” said Staggs.

Staggs faced increasingly severe seizures. She traveled from Oregon to the Cleveland Clinic main campus in May 2017 for brain surgery. That life-changing procedure is reflected in the novel.

“I was sent here because a doctor said, ‘If your seizures don’t change, you’ll die before you’re 50,’” she recalled. “I had two young kids. I was 36, and at 36, 50 doesn’t look that far away. So, the ablation really did change my life.”

Staggs’ neurological team at the Cleveland Clinic included her epileptologist Dr. Imad Najm, director of the Cleveland Clinic Epilepsy Center.

The two reunited in Cleveland Thursday for the book launch and a free event Thursday night in Beachwood. They are both speaking at Empowering Epilepsy’s second annual, The HeART of Epilepsy. CLICK HERE for more information.

Najm said it warms his heart to see Staggs doing well and says her book provides a powerful perspective on what it feels like to have epilepsy, a condition that affects 1 in 26 people in their lifetime.

“The hope is, one way or another and working as a team, we can help people in their challenging condition and make seizures less impactful on your everyday life,” said Najm.

Epilepsy forced Staggs to give up a career she loved as an attorney. However, the married mother of two says despite the struggles and setbacks, she’s now writing a new and meaningful chapter in her life.

She says the book was healing to write and hopes the epilepsy community finds empowerment and inspiration in her book.

“I hope that this gives them a platform to say, ‘Hey, boss, can you read this?’ or here’s a book I can recommend to my friends and family so that they can understand that having epilepsy is just a part of me,” she said. “It’s not weird. I’m not ashamed of it, but I do need you to understand that just because I look OK, doesn’t mean that I feel OK.’

Both Staggs and Najm hope more awareness also leads to more future breakthroughs.

“Moving from a disease that’s uncontrollable to hopefully the next novel from Sara will be entitled Controllable,” said Najm.

“Yes, the sequel,” smiled Staggs.

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