A WOMAN IN CONTROL: Author Stacey Chillemi gives others with epilepsy a reason to stay strong

Published in the Asbury Park Press 08/21/05

BY ELEANOR O'SULLIVAN
STAFF WRITER

For 33-year-old Manalapan author Stacey Chillemi, the first moment of clarity arrived in college.


"I developed  epilepsy when I was 5; they believe it was caused by encephalitis," she says. "In those years, epilepsy was so hush-hush. So by the time I got to college, I wanted some information.

"When I checked the college library (at then-Stockton State College, Galloway), they had maybe five books with information and all of it was written by and for doctors," she adds. "It was way over my head. I wanted something that the average person could understand."

Chillemi, who is married to Michael Chillemi, a chiropractor — they have two sons, ages 7 and 4, and a daughter, 2 — figured the most obvious thing to do was to write her own story. In the process, she discovered her story helped others with the affliction.

She began writing books at the end of the 1990s, by which point she had married and, determined to live a full and "normal" life, had become pregnant.

"I actually met my husband in English class," Chillemi says. "He has been wonderful, so supportive during all of this. And so has his family.

"When I was pregnant and I needed to be driven to the doctors, his younger brothers would drop what they were doing to take me."

Chillemi has since written five books, including her debut book, "Epilepsy: You're Not Alone — An Epileptic's View on How to Cope With the Disorder," and another, prompted by raising her own children, "My Mommy Has Epilepsy."

She does not drive because of her epilepsy, and she has had seizures in front of her children. That, she says, moved her to record her own experiences in book form.

"All kinds of people have epilepsy and it's not something you develop only when you're young or because you're poor or any of the usual cliches," she says. "But it is something that you have to believe you can live with, so you can pursue a happy and safe life.

"I had an e-mail from a woman who developed epilepsy in her middle years and she was nearly suicidal because of it. She read one of my books and she said it made her feel there was hope. That's what I really set out to do."

According to the Epilepsy Foundation, based in Landover, Md., epilepsy and seizures affect 2.7 million Americans at an estimated annual cost of $12.5 billion. About 200,000 new cases of seizures and epilepsy occur each year. Ten percent of the American population will experience a seizure in their lifetime, and 3 percent will develop epilepsy by age 75.

Chillemi said her second moment of truth took place in 1995, when she was fired from a job as an intern for a broadcast corporation in New York.

"I was walking down the hall and I had just passed two producers when I had a seizure and I fell. Very shortly after that I was told I was not suitable for my job," she says. "I know it was because I had had the seizure. That's when I decided I would become an advocate for epilepsy."

Gary Gross, director of the Jeannie A. Carpenter Epilepsy Legal Defense Fund, also based in Landover, said legal guidance on job discrimination — still a murky issue because of vagaries in the law — is available through the fund, established one year ago.

Gross agrees that a young person with epilepsy looking for work today faces a problematic world.

"For a person with epilepsy, there are no guarantees," he says. "In fact, the reverse is probably true.

"We have done a study of cases in federal state courts in the last five years, and we found something like seven out of 50 cases have been in favor of the employee. All the others, the courts have upheld the employer's ability to terminate or refuse to hire (a person with epilepsy)," Gross says.

Chillemi said she has "90 percent control," and her 10 percent of vulnerability occurs during ovulation and menstruation, when she retains water that puts pressure on the brain. She takes medicine for her epilepsy but otherwise, she says, she leads a life full of activity.

"I know my limitations, but I am able to do all the usual household things and care for my family," she says. "I don't rush things — you have tomorrow and the next day. My goal is to help people with epilepsy learn how to accept and love themselves."



For more information, e-mail Stacey Chillemi at Staceychil(at)aol.com, or call the Epilepsy Foundation at (800) 332-1000.