Epilepsy You're Not Alone: A Personal View On How To Cope With The Disorder by Stacey Chillemi

From the Publisher

Epilepsy You're Not Alone is a inspirational self- help book that teaches people with epilepsy how to live a healthy and productive life. The book shares encouraging stories and gives readers a workable program for coping with their disorder enabling readers to overcome their disorder and get on with their lives. Having to cope with epilepsy is tough. Many people with epilepsy feel as though they are alone. They feel they are trying to battle the disorder all by themselves. My aim in this book is to show readers how to live with epilepsy, empowering them to take responsibility for their life and well-being.

Epilepsy Your Not Alone motivates people with epilepsy, urging readers to create their own unique journal by employing psychological and spiritual practices in combination with a variety of more traditional diet and exercise regiments. Epilepsy You're Not Alone teaches readers how to be their own designer, creating pathways to a fulfilling future. There is a whole world in front of you. This world has millions of opportunities just waiting for you to encounter. It does not matter what age you are. You can achieve anything you put your mind too.

Star Ledger Newspaper - Lad

Chillemi is the author of epilepsy you're not alone, an inspirational book written for people living with epilepsy. inspired by her own battles with epilepsy, chillemi wrote a book to give those coping with the disirder greater self esteem, hope and motivation to continue living normal lifes.

Product Details

• Table of Contents
• Forewords & Introductions

Table of Contents

Forewords & Introductions

Epilepsy has been on this planet as far back as time will take us.  According to the Epilepsy Foundation of America, they have quoted some of history's finest to have epilepsy.  Not all these are confirmed as having epilepsy, but they state that Alexander the Great had epilepsy (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's 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 epileptic 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 to continue 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 would feel like I put my hand in a socket and was getting electrocuted.  The electrical feeling would begin in my feet and travel up my leg through my body.  Once the electrical feeling reached my head that would be the moment where I would lose consciousness.  The worst part of my seizure is have to feel this electrical current travel through out 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     (clonic attack extremities) which are symptomatic of epileptic 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.  Non-epileptic seizures can be caused by, among other things, high fevers, and alcohol withdrawal.

Epilepsy affects one to two percent of the United States population.  Occurring ten times more frequently than multiple sclerosis and 100 times more frequently than the motornueron disease.  Epilepsy affects millions people worldwide, with more than two million people in the United States alone.

Statistics show that one out of twenty people will have at least one seizure associated with epilepsy in his or her life.  One out of 200 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, epilepsy is not understood by most people.  I am writing this book, therefore, to help people with epilepsy better understand their disorder and also to educate the general public.  Many epileptics that I spoke with tell me that they feel their friends, family and doctors don't understand what their going through having to live with epilepsy.  It's 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 your having a seizure and how you feel afterwards.  Your family, friends and doctors may not completely understand how you feel, but there are other epileptics that understand what you're going through having to live with epilepsy.  You're 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 of America.  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. Needless to say,  everyone's story was different, but their 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 actual 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 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 that person suffering from the attack in a dangerous position. It may cause to be unable to handle certain responsibilities and can even prevent you from participating in some social functions.

The psychological after effect of seizures can make an 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.
One goal that I had was to drive a car.  I was able to drive for a couple of years. Once I began to start frequently having seizures my neurologist asked me to stop driving. I used to get very frustrated not being able to drive a car. I am the type of person who likes to depend on myself and not have to rely on others to help me take care of my responsibilities. I felt frustrated and embarrassed to ask other people to drive me to my destinations. It did not matter that they were my family and friends. I felt people were feeling sorry for me and felt some type of obligation to have to drive me to the places I needed to go. I became depressed for a while and I began feeling sorry for myself, until I stopped and said, "enough is enough."

Surprisingly, I was not the only person who was feeling this way.  While researching this book, I found that so many people that have this disorder feel so alone.  Many people who have written to me have given up their goals and expectations in life. Their attitude about life is very negative. Many people have given up because they feel they have too many limitations and restraints. Countless individuals who suffer from epilepsy think that they can never accomplish their goals and dreams in life, but I am here to tell you that this is not true.

The trick is to learn how to deal with the hopelessness that your experiencing. I strongly believe the first step is to fully accept that you are epileptic. I taught myself to accept that fact and I have learned how to live with the disorder in the most positive way possible. In this book, I talk about how I taught myself to accept me for who I am.

Another important factor is to understand that you are not battling this disorder by yourself.  You need to realize that other individuals can relate to you and can empathize with the pain that you are feeling. We all need to be reassured at one point that there are people who understand where we are coming from. These people are willing to reach out and give you their support.  You need to recognize that these people are not going to give you their help unless you ask for it.
It is important that you learn how to live with epilepsy and endure it. Otherwise, you could end up destroying yourself your relationships with people, your friendships, and your family in the end.  Everything you do and say affects the people around you.

Eventually if we do not learn how to deal with all these issues, we could end up really destroying ourselves emotionally, physically and spiritually.  This does not have to happen if you do not let it.  One way to prevent this from happening is to develop a lifestyle that is suitable for your own needs. You need to make sure that it is a lifestyle that is going to make you happy over time. You need to be your own designer, creating pathways to a fulfilling future.

There is a whole world in front of you.  This world has millions of opportunities just waiting for you to encounter. It does not matter what age you are.  You can achieve anything you put your mind too. For instance, I graduated college with a degree in business and marketing. I have worked in computers and sales for the past three and a half years. I wrote this book and several newspaper articles on the topic of epilepsy. I am happily married with my first baby on the way. My seizures have been well controlled through medicine, exercise and healthy eating habits. I refuse to let epilepsy stop me from getting to the destination I plan on going.  The letters in this book share some emotional triumphs of some experiences individuals with epilepsy have endured. They also tell how having epilepsy has affected them physically.  Many people who have written to me have shared the methods they used to defeat epilepsy. So there is hope my friends and no need to give up. You will not lose the battle unless you let yourself loose.

This book gives you the materials you need to gain encouragement and strength to overcome having epilepsy and being able to live life to its fullest.  In this book, I want to be able to focus on certain topics related to epilepsy that no one has often discussed. One of my main goals in this book is to help others recognize that life has much to offer. Life does not have to cease just because you have epilepsy. As I mentioned earlier, In this book we will be discussing what people go through emotionally when they have epilepsy. We will be going over different ways to help yourself emotionally, physically and spiritually.

The techniques in this book will help you build the inner power to do anything or become anything you want in life. My approaches for dealing with epilepsy will enable you to reform a better direction in your everyday life of living and dealing with your disorder. Most
important, this book shows you that you are not alone. There are people here that understand what your going through and support you. This program will help you build confidence in yourself Once you establish self-assurance, you will start to see your inner strength boost.  When one quality improves, all your other attributes will enhance also. This book will give you the tools to learn how to incorporate epilepsy into your life so you can live with the disorder on a positive note.  You can make life anything you want if you have positive goals to focus on and if you have a good understanding of how to approach them.