Author writes to help others deal with epilepsy

Stacey Chillemi keeps a positive outlook when disorder poses challenge

BY KATHY BARATTA
Staff Writer

Author Stacey Chillemi, shown here with her husband, Michael, tries to look on the bright side of life as she deals with the effects of epilepsy.

MANALAPAN - Stacey Chillemi is no stranger to a challenge. Since the age of 5 when a viral infection left her with epilepsy, she has been determined to live a life as full and happy as anyone else.

According to the Epilepsy Foundation of America, epilepsy is a physical condition that occurs when there is a sudden, brief change in how the brain works. When brain cells are not working properly, a person's consciousness, movement or actions may be altered for a short time. These physical changes are called epileptic seizures.

Now, as the mother of children ages 3, 6 and 8, and the published author of fiction and nonfiction works, Chillemi, 34, has accomplished the goal she set for herself following that first grave challenge that came at the tender age of 5. That goal was to enjoy life in spite of her disorder.

Chillemi's previous writings for the national Epilepsy Foundation as well as her nonfiction books that include children's books, made her a prime pick for the newest additions to the "Chicken Soup for the Soul" series.

Chillemi's original short story "Shop-ping My Way Out of the Blues" is included in the latest addition to the series, "Chicken Soup for the Shopper's Soul - Celebrating Bargains, Boutiques and the Perfect Pair of Shoes," which joined previous series entries on The New York Times best seller list.

If nothing else, Chillemi's message is one of perseverance and positive thinking, one that says physical or material setbacks are no excuse to buy into a victim mentality.

In an interview, Chillemi looked back and ahead with truth, honesty and a little self-effacing humor, the humor she says helps her deal with the harsh realities of life that beset everyone.

Chillemi said perhaps it was because she never saw herself as handicapped that she did not want to embrace limitations but knew she would have to be realistic and set a list of goals, not a wish list; like when she had to surrender her driver's license after suffering a slight seizure while driving and rely on her friends and family to be her transportation.

At the time, Chillemi said, she saw not having a driver's license as relinquishing any sense of independence or freedom.

It was while in college that she wrote her first book, a book she said came from her own experience of dealing with "the strain of college and the effects of epilepsy medication."

She said when she went looking for books to help her deal with her problems, she found there were none and so she decided to write one. That first book, she said, was a self-help book.

Chillemi said she has written several self-help books since the first one, which was a compilation of her own experiences and those of others with epilepsy who shared their stories with her through the auspices of the national Epilepsy Foundation.

"They were stories of struggle and triumph," Chillemi said.

She shared the story of her first foray into the workplace after earning a bachelor's degree in marketing with a minor in advertising. Chillemi said she had always dreamed of being the quintessential New York career woman, and it seemed like she was on her way when she took a job with a television network in Manhat-tan.

Chillemi said it was shortly after she started working that again, circumstances out of her control would take over. She said she was walking down a corridor at the network's offices when she felt a seizure coming on.

With a rueful laugh, Chillemi recalled that as she was sliding to the floor, "two producers walked right by, one actually stepping over me when I was down, and never stopped." She said they did not even take the time to call someone to help her.

Chillemi said she recovered from the seizure, taken aback by the indifference she had just encountered but determined to keep going. However, she said, she was called into "the office" a short time later and told that "it looked like I wasn't really what they were looking for."

Chillemi said she was young and naive, and it never occurred to her to sue the company.

"It just wasn't something I thought about doing," she said.

Chillemi said her seizures only seem to occur when she is ovulating or menstruating. She said one thing she can always count on with her seizures is that she gets a "warning," what she described as almost like an electrical hum through her body. She said that built-in "early warning system" is what has made it possible for her to have children and be able to take care of them without fear of a seizure affecting them.

She said there was always time to set the children down in a safe place until a seizure, which typically lasts just under a minute, had ended.

In fact her decision to have children is one, she admits, that not a lot of people afflicted with epilepsy make and the reason she co-wrote a book with a doctor from New York University Medical Center for pregnant women or women who are thinking of getting pregnant, who have epilepsy.

She admits that having a supportive spouse "makes all the difference."

Chillemi said her husband, Michael, a chiropractor, and his family took her condition in stride and have never been anything but completely loving and supportive.

With characteristic humor, Chillemi said that when she told her future mother-in-law she had epilepsy, the woman's reaction was, said a laughing Chillemi, "Thank God. I was afraid maybe you were a little simple-minded."

Chillemi said she knew her future mother-in-law was referring or reacting to one of the manifestations of her seizures; that she sometimes will start to blankly stare past a person or object until the particular episode passes.

Chillemi said her humor has always sustained her and allowed her to focus her perspective in a positive direction. She said there are plenty of people in the same situation as she is - people who rely on others to some degree.

Instead of bemoaning her lot, Chillemi said she came to realize how she could look at the same situation in a way that celebrates the fact that she is lucky enough to have family members and friends to rely on and that she is able to help them fulfill their humanity.

Although she said she now has her husband and wonderful in-laws to rely on along with her tried and true friends and family, Chillemi said, "it's still hard sometimes to cope with not being able to be totally independent."

But, she said, positive projection is what she consciously strives for and tries to impart to the readers of her non-fiction essays, her poetry and her fiction writings.

She said she started to write children's books after her children saw her having a seizure.

"It was very scary for them, so I wrote a book to help them cope," she explained.

Chillemi said there are still hurdles to overcome, stereotypes and myths that are attached to the stigma that is still attached to epilepsy. She said that in spite of the technological and medical advances that have been made, people still tend to fear what they do not understand.

She tells of a woman in Hawaii who told her she has spent her life trying to keep her epilepsy quiet, "because her mother told her that if people knew, they would think her cursed."

Always keeping in mind that epilepsy is a "disorder, not a disease," Chillemi said it is people like that woman who inspire her to write stories and to work to dispel the myths that stunt happiness and fulfillment in anybody, for any reason.