Article Written By Jenna Martin, Senior Editor
The Epilepsy Project
Living life with epilepsy can be a colossal struggle. But, if you are Stacey Chillemi, it is a challenge and an opportunity to help others.
Stacey Chillemi is 32 years old, a mother of three, a wife and writer. Her journey and reason for being is defined each day by the happiness in her children’s eyes and the people with epilepsy she has helped through her writing. “Through this experience with epilepsy I have learned to accept my limitations and to change the way I look at things. Through my writing I am able to help others and just knowing I’ve helped is enough of a reward,” said Chillemi.
How it Began
At five years of age, Chillemi contracted encephalitis from what doctors’ surmise began as an ear infection. For four days she lay in a coma and doctors were unsure of whether she would suffer from paralysis as well as the extent of the brain damage. Fortunately, she recovered from her bout with encephalitis with no paralysis. However, she was left with epilepsy. Since her diagnosis, 27 years ago, Chillemi has had seizures ranging in severity from mild seizures in her sleep to tonic-clonic seizures.
Living with Limitations
As a mother of three and a woman with epilepsy, Chillemi is realistic about her limitations, “Having epilepsy and being a mom is difficult at times because I worry that if I have a seizure and I am unable to recover fast enough, that my kids will suffer,” said Chillemi. In fact, the entire time Chillemi has been a mother she has had only one tonic-clonic seizure resulting in serious injury. According to Chillemi, she was walking the dog with her children when she felt a seizure coming on. She immediately instructed the children to go inside and wait downstairs for her. Following the seizure, Chillemi realized she had suffered a head injury and reached out to a neighbor for help. After the tonic-clonic seizure Chillemi decided to write a children’s book, called “My Mommy Has Epilepsy”. Her goal was to help children understand epilepsy in an age appropriate way as well as to help dispel some of the fear she had witnessed her own children experience. “I don’t want my children to get nervous or to worry about my seizures and the tonic- clonic seizure really motivated me to write a children’s book to help them and other kids cope and understand epilepsy.”
She admits she is also limited by not being able to drive, but attributes her ability to ask for help when she needs it as one more lesson learned. “At first it was difficult to rely on other people to drive the children and me places. I felt bad asking family and friends. But, now I’ve accepted my limitations and accepted who I am.”
Wisdom for Women
Chillemi cautions women with epilepsy to monitor their stress level. “Don’t try to accomplish too much. Do as much as you can and remember to set realistic goals and to reward yourself each day.” She also believes that in order to live with epilepsy and maintain a positive attitude it is important to focus on one’s self. “ Don’t look at what other people can do, only focus on yourself and your abilities because if you constantly compare, then you are adding to your stress level, which leads to being more physically drained and ultimately leaves you open to experience more seizures.” She advises women with epilepsy to educate themselves about their epilepsy and believes knowledge helps alleviate stress as well, “Women need to consult with their doctor, but not rely on their doctor for all of their information. In order to really feel empowered it is essential to take the initiative to learn all you can about epilepsy.”
Chillemi is in the process of publishing several books including, “Epilepsy and Pregnancy”,which she coauthored with Dr. Blanca Vazquez, “My Mommy Has Epilepsy” and “Love of a Lifetime”. She has also published “Epilepsy You’re Not Alone”. For more information regarding Chillemi’s work please visit : www.authorsden.com