PREFACE: This book is dedicated to kids and young adults who are having a hard time dealing with their disabilities. I am one of those individuals. I have a disease called “myotonic muscular dystrophy.” This is a life sentence, and I have had to accept my disease and go on and live my life. I did not ask for this disability. I am sure you did not ask for your disability, either. Still, if you have a “chronic” disability, it is not going to go away. And it could get worse for some of you. It will for me. There are a lot of disabilities that young people can have. Maybe you have a brain injury or some other injury caused by an accident. Maybe you have a disease. You could also have a mental handicap, like a learning disability or speech problem. If you think you are alone, you’re wrong. According to the U.S. census of 2003, almost 7 percent of the population of children living at home has a disability*. We are a big part of the United States! I have a disease that affects my body and at the same time has caused me to have a learning disability and a speech disability. I guess you could say I have quite a few problems. Later in this book I will tell you more about my medical problems and what I am doing about them. The point I want to make to young people who have a lifelong disability and are struggling to do their best is that you are on a long journey, but you have fellow travelers. We are all on that journey together. I speak from my experience as a thirty-one-year-old individual. Because of my disability, I have met many other young people with various disabilities. I have seen them struggle like me—up close. I have even seen some of my best friends have seizures. I have friends who have been crippled, including one who was perfectly healthy and a popular guy in high school before a tragic auto accident changed his life. I could go on and on. Life is not fair, and it would be very easy for us to just give up and to say, “It is not my fault.” But life does not work that way. Bad things do happen to good people all the time. As surely as you cannot erase your problems, you also cannot avoid or ignore them, because that would make it harder for you later in your life. You basically have no choice but to find ways to help yourself. Otherwise, your disability is going to catch up to you, and things could get worse. There is a better way to live your life. We all have our problems and need to learn what to do about them. Following are just some of the things that I will cover in this book:
• You will need to find out all about your medical problem from doctors and others, and they sometimes use really confusing lingo—so you have to learn how to get them to talk to you at your level of understanding. Your disabilities are hard enough without doctors confusing you!
• Doctors can only do so much to help you. Even when you understand your limitations, you still need to figure out different ways to help yourself and use your capabilities. It is too easy to say, “I cannot do this.” You need to change your thinking and say, “I am having trouble doing this.” Don’t be afraid to try over and over again, even though it is a struggle. And when the going gets really tough, don’t be afraid to ask for help.
• There are a lot of challenges for young people with disabilities—things like learning how to live your life and enjoy it, and getting along with other people who don’t have disabilities, as well as those who do! Illness will always be a challenge for people with certain disabilities. Even little problems, such as a cold, can be life threatening if not taken seriously.
• Life will also present you with many practical problems, like finding and keeping a job. Sometimes you are likely to get down on yourself, and you may even hate yourself because of your disability. This has happened to me. I even had serious thoughts of suicide at a very trying time in my life. There is a lot to think about, but I hope you will realize as you read this book that although we all face some very tough times now and then, there are ways we can get through them.
As I talk about these kinds of experiences, based on my own journey and struggle, I want you to know that I don’t have all the answers. And I am just as worried as you are. But in this book, I hope I can help you to see that you can find your own destiny. Who knows? Maybe, if enough of you read this book, we can make a difference in helping one another. Maybe we can even set up a Web site with the help of adults who know how to do that. I know that these challenges must sound almost impossible for some of you. But I have found that what feels so lonely, difficult, or scary at certain times in my life is just that—a time in my life, and a problem situation. It will pass. You need to recognize that life is like that. I have learned that my disability is not in control of me. I am in control of me, and it is up to me to make my life better. Even people who are healthy have down periods in their lives, and sometimes they make a mess of things, too. So don’t be so hard on yourself—every challenge in life is a learning process. I hope you find this book to be a rewarding learning experience that is invaluable throughout your life. We all need our dreams and our hope for a better life. My greatest wish is that you will realize some of your fondest dreams in your lifetime, and that this book offers you the inspiration to go on to do your very best.
Publisher: WishingUwell Publishing (2005)