Epilepsy You’re Not Alone: A Personal View on How to Cope with the Disorder By Stacey Chillemi LULU EDITION * * * * * PUBLISHED BY: Stacey Chillemi on Lulu Epilepsy You’re Not Alone: A Personal View on How to Cope with the Disorder Copyright © 2012 by Stacey Chillemi ISBN: 978-1-257-17881-0 Lulu Edition License Notes This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each person you share it with. If you're reading this book and did not purchase it, or it was not purchased for your use only, then you should return to Lulu.com and purchase your own copy. Thank you for respecting the author's work. * * * * * Epilepsy You’re Not Alone: A Personal View on How to Cope with the Disorder * * * * * Contents DEDICATION ACKNOWLEDGMENTS INTRODUCTION SECTION ONE LIVING WITH EPILEPSY Chapter 1: The Emotional Scar of Epilepsy Chapter 2: Poetry Straight From the Heart SECTION 2: EPILEPSY & YOU HOW YOU CAN WIN THE BATTLE Chapter 3: Moving Ahead Chapter 4: Your Inner Self Chapter 5: The New You Chapter 6: Being Honest With Yourself Chapter 7: The True Meaning of Dreams Chapter 8: LOOKING AT EPILEPSY IN A WHOLE NEW LIGHT Chapter 9: The Importance of Self-esteem & Self-confidence SECTION 3: HOW KEEPING YOURSELF IN GOOD HEALTH CAN HELP YOUR EPILEPSY Chapter 10: Keeping Yourself in Good Health Emotionally, Physically and Spiritually SECTION 4: ABOUT THE AUTHOR Chapter 11: About the Author Chapter 12: Having a Baby with Epilepsy SECTION 5: CLOSING THOUGHTS Chapter 13: Journeying into the Millennium Appendix 1: Foods, Fats and Their Calories Appendix 2: Epilepsy Clinical Research Centers and Organizations that Help Epilepsy Appendix 3: Glossary Bibliography About the Author * * * * * Dedication I dedicate this book to my wonderful family: to my husband Michael who has always accepted me for who I am and supported me through my highs and lows, and to three children Michael, Alexis and Anthony whom I love with all my heart and soul. * * * * * Acknowledgements Writing this book was a project that could not possibly have been accomplished alone. This book was created using a combination of thoughts; ideas, experiences, and lives that have help change my life. My motivation to write this book began when I walked into a bookstore and was appalled to find so few books on the topic of epilepsy. It made me even angrier to find that doctors seemly wrote a majority of the books for doctors. The vocabulary and the approach made them difficult for the reader to understand. At that point, I knew that I wanted to change the way society looked at people with epilepsy, and how people with epilepsy looked at them. I wanted people to understand what epilepsy is and what it does to people who suffer with the disorder. Therefore, I decided to write a book about epilepsy recalling my own and other people’s personal experiences with the disorder. I wanted to help others with this book and educate individuals who knew nothing about epilepsy. I cannot even begin to express my thanks to all the people who helped me with this book. I first must give appreciation to my husband Michael and my son Mikey and my daughter Alexis, who gave me encouragement to write this book. You stood by my side through all the difficult times I had dealing with epilepsy. To all my family, friends and loved ones who, “Epilepsy You Are Not Alone," has played a big role in my life and has supported all my decisions that I made concerning epilepsy. I would like to express my deepest gratitude to all of you. I was stunned when I began reading everyone’s letters to find how similar we are emotionally about having epilepsy, and how similar our thoughts were about living and coping with epilepsy. We all struggled trying to make our family and loved ones understand how we felt about epilepsy. Your letters showed me how I was not alone and that there are many others battling epilepsy. I also realized through project something I did not recognize beforehand; there are many individuals who have a worse case of epilepsy, so there is no reason to pity yourself. You need to get on with life and do something worthy for yourself and others. Therefore, my special thanks go to Adeline A. Napolitano, Melissa Helland, Mary Ellen Reynolds, Ed Schott, Faith Shives, Jerry Griffice, Patrica Otake, Larry Daniel, Darlene McLaughlin, Michael Chupa Jr., Dana Schwartzberg, Debra Ann Knudsen, Donna Letham, Ruth Ann Ray, Vanessa Lovell, Cindy Holsing, Francine Pinkowitz, Betty Brown, Cindy Dailey, Carolyn Bowman, Sherry Kocha. I would like to thank everyone who helped me and motivated me to write this book. God bless you all. * * * * * Introduction Epilepsy has been on this planet as far back as time will take us. According to the Epilepsy Foundation of America, some of history’s finest may have had epilepsy: people like Alexander the Great (356-323 B.C.), Alfred the Great, West Saxon king and scholar (849-899), Hector Berlioz, French composer (1803-1869), Julius Caesar (100—44 B.C.), St. Paul the apostle, Socrates the Greek philosopher and mathematician, and Vincent Van Gogh the Dutch painter. Anyone can have epilepsy. Before we go any, further let us ask ourselves the question, “What is epilepsy?” Epilepsy is caused by sudden, brief changes in a person’s brain activity. When brain cells fail to function properly due to epilepsy, a person’s awareness and movements may be altered, perhaps dramatically, for a short period. These sudden physical changes in brain activity are called, "seizures." A person’s brain cells usually transmit information to the rest of the body by way of orderly electrochemical signals. These signals are not transmitted randomly; they do not course pell-mell through our nervous system. They are, rather, transmitted selectively, as some messages are inhibited and others allowed continuing on. This selectively prevents “cross talk” or message overload in the body’s communication system. Occasionally, however, a group of brain cells simultaneously “fires” or discharges a large number of electrical signals that produce a temporary rise in activity in certain parts of the brain, thus disrupting a person’s internal communication system. This is a seizure. A seizure disturbs a person’s consciousness, much in the way a lighting storm can disturb the electrical power supply. Each time, I have a daytime seizure, I feel as if I put my hand in a socket and arm being electrocuted. The electrical feeling begins in my feet and travels up my leg through my body. Once the electrical feeling reaches, my head is the moment where I lose consciousness. The worst part of my seizure is feeling this electrical current travel throughout my entire body. So try closing your eyes for a moment and visualize a lighting storm and how it affects an electrical power supply. This is very much what is happening inside a person’s head when he or she is having a seizure. This disruptive overload of brain activity causes the strange body movements, unusual changes in speech, blank stare, and twitching of the eyes, which are symptomatic of some seizures. A single seizure, bear in mind, does not necessarily signal epilepsy. Epilepsy involves recurrent seizures, varying from one or more a day, to one a month or even as few as one or two year. Seizures have many causes, epilepsy being only one of them. Having one or two seizures does not mean someone has epilepsy. Seizures can be caused by, among other things, high fevers, and alcohol withdrawal. Epilepsy affects about one percent of the United States population. Occurring ten times more frequently than multiple sclerosis and 100 times more frequently than the motornuron disease. Epilepsy affects millions of people worldwide, and more than two million people in the United States alone. Statistics show that one out of ten people will have at least one seizure in his or her life. Four out of 100 will ultimately develop full-blown epilepsy. According to the Epilepsy Foundation of America, the causes of 70% of all cases of epilepsy are unknown. Unfortunately, most people do not understand epilepsy by the age of 84. I am writing this book, therefore, to help people with epilepsy better understand their disorder and to educate the public. Many People with epilepsy that I spoke with tell me that they feel their friends, family and doctors do not understand what they’re going through having to live with epilepsy. It is hard for others to understand the fear you carry inside yourself not knowing when the next seizure is going to occur. How you feel when you are having a seizure and how you feel afterwards. Your family, friends and doctors may not completely understand how you feel, but there are people who have the disorder that understand what you are going through living with epilepsy. You are not fighting this disorder all by yourself. There are many other people everyday struggle with the same frightening and bewildering experiences. I, for one, did not fully understand how widespread epilepsy is until I fully researched this book. When I first started my research, I published an article in EPILEPSY USA—a small, semi-monthly magazine sponsored by the Epilepsy Foundation. In the article, I encouraged readers to write about their experiences with epilepsy. Many did write and shared some of their deepest feeling about what it feels like to suffer from epilepsy. Everyone’s story was different, but his or her feelings about the disorder were strikingly similar. Most said that in a very basic way they were just trying to live as normal a life as possible in spite of seizures and their daily fear that a seizure could occur at any time. Epilepsy affects every aspect of a person’s life. The more frequently a seizure occurs, the more profound, needless to say, is the effect. The aftereffects of a seizure can be devastating. A seizure leaves you tired, confused and with the possibility of enduring some memory loss. Undergoing a seizure may stop you from being able to perform certain tasks because of the risk of a convulsion, which could put you in a dangerous position. It may cause you to be unable to handle certain responsibilities and can even prevent you from participating in some social functions. The psychological affect after a seizure can make individual with epilepsy feel they will be restricted from accomplishing the goals they strive for in life—even small goals like driving a car, diving off a diving board, swimming by yourself or even being able to baby sit a friend’s child. Some people may feel that these goals are not that important, but the people who have the disorder know that they are very important.