The diagnosis hit in mid-May, casting a shadow over the spring like the long winter had never ended. Thirty years old, the doctorate in full swing, and then.
They came out of nowhere. Two tonic-clonic seizures three weeks apart. The first in the shower, the second in an Indiana Cracker Barrel.
What do you do when you’re diagnosed with epilepsy at age 30? Do you scream? Cry for the life you had yesterday? Sara Kennedy felt scared and strangely relieved. After two years of weirdness, she finally had a name for it.
“You know when you get a diagnosis like that, your life is changed,” says Kennedy, now 36. “Once you have it, you can’t change back.”
The Road to an Adult Onset Epilepsy Diagnosis
Reasons for epilepsy in adults can run the gamut from head trauma to infections. Sometimes, as in Kennedy’s case, there is no clear cause. Kennedy’s epilepsy journey started in 2011. She experienced 15-second spells in which she felt paralyzed by fear, stumbled on words, lost her hearing and couldn’t read. They were simple partial seizures, but she didn’t know it. Unable to grasp what could be wrong, she hid them from everyone.
By 2013, they were happening daily. Kennedy scheduled a doctor’s appointment just a hair too late. On May 6, 2013, she had a tonic-clonic seizure in the shower. Epilepsy moved from the shadows to the spotlight.
Accepting life with adult onset epilepsy took time. Since starting her doctorate, Kennedy had dreamed of becoming a professor. Not anymore. She fears having a simple partial seizure in class. Her affinity for acting has fallen by the wayside, too. “The diagnosis really changed how I think about my present and future,” she says.
One Life, Two Worlds
“The diagnosis.” “My diagnosis.” It’s what you say when a diagnosis disrupts the only reality you’ve ever known. For Kennedy and others with adult onset epilepsy, the diagnosis is life-changing. There’s Life Before Epilepsy and Life After. Two chapters, distinctly different realities. Underneath, the same heart beats. How to make peace with it all.
“It’s not easy,” Kennedy says. “I was more carefree before. I never would have considered not having children. Now it’s something I’ve given a lot of thought to. What if my child has epilepsy? I also have to think about my potential spouse, who will have to deal with me if I have a seizure. Epilepsy’s given me a lot to think about.”
Finding Fulfillment in a Life with Adult Onset Epilepsy
After her epilepsy diagnosis, Kennedy took a year off from her dissertation, trying one epilepsy medication after the other. Finally, she found a combination that worked.
The simple partial seizures still occur occasionally, but medicine has staved off her tonic-clonic seizures for six years. “That gives me hope,” Kennedy says. “I’m hopeful they’ll continue to be controlled, that one day I won’t have any seizures at all anymore.”
Today the sun’s coming up on a life with new dreams, new achievements. Kennedy soon will defend her dissertation. The topic, how suburban transportation affects access to healthcare, was born directly from her adult epilepsy experience.
Her friendships are tighter, more authentic. If she and her mom were close before, epilepsy only cemented their bond. She’s dating, gearing up for her first epilepsy 5K, looking forward to fostering children. And in shelving a teaching career, Kennedy found a calling in community-based research.
Adult epilepsy always requires making huge adjustments. But to those newly diagnosed, Kennedy says absorb it, accept it and move on.
“Make your new life a good life,” she says. “It’s OK to get angry or sad, but you can’t change back. The biggest thing for me was accepting that I’ll never have the life I used to have, and I’ll never have the life I thought I’d have. But I can still have a great life.”
Please note: Photos courtesy of Sara Kennedy; Cleveland photo by Beth Geraci.