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Foreword
This book tells the story of an amazing man who sustained an injury and yet never let it define him. Make no mistake: brain injury can be a life changing event, but Joe Blakemore should not be defined as just a person with a brain injury. He is that and much more.
Joe has seen quite a bit of adversity in his life, even before his automobile accident in 1963. From his years in an orphanage to his dreams of becoming a professional baseball player that were cut short by a severe knee injury, his life has been one of cruel ironies and continual adaptation. Don’t get me wrong: He did not always cope with these challenges well, but through it all he has somehow managed to maintain his sense of humor. He has come a long way, and today this consummate storyteller is one of the most enthusiastic men you will ever meet. From not ever being expected to walk, talk, or see normally again, he has gone on to earn several college degrees, meet and marry his wife, and raise two children. So this book is not just for those with brain injuries. It can serve as an inspiration to all of us who have ever faced adversity and contemplated giving up.
Until quite recently, I was the supervisor for the helpline at the national office of the Brain Injury Association of America. That’s how I met Joe Blakemore. Unhappy with the response he got from the Helpline staff, he asked to speak to the boss, and he got me. All he wanted was for us to change the workers compensation system in Florida. And to tell him how to get better. And to find him a lawyer who was an expert in brain injury law. Unfortunately, climbing the ladder, so to speak, did not change the answer. I told him we could do one of the three things he asked for. He said, in so many words, that we were worthless. After he was done yelling at me, I told him that he could shoot the messenger as many times as he wanted, but the answer would not change. And so began our relationship: on the phone, he in Florida, me in Virginia. I have never met him in person, but I know him.
I have spoken about brain injury and what can happen following a brain injury with about 5,000 to 6,000 people on the average every year. I have heard stories about the impossible happening, both good and bad, and everything in between. People with brain injury are often misunderstood. They do not necessarily look “disabled” so many people think their “forgetfulness” is laziness, stupidity, or apathy. Once you have read this book, you will see for yourself that Joe is far from lazy, stupid or apathetic. In fact, he’s an inspiration.
Joe and I have talked several times a year over the last five years, and I could hear the change in his cognition over time. He got better at finding the right words, and recalling previous conversations with only minimal help. This gives some insight into what is possible after a brain injury. When I first spoke with him, Joe was argumentative and saw the world with blinders on. He saw the world his way, and to him, it was the only way. If I contradicted him or tried to give him information to change his views, he became belligerent and would not even consider the idea that his world view might not be the only one. But over time I noticed that he began to listen to me.
I was interested in understanding how these improvements could occur more than thirty years after his original injury. That’s when he told me he had started to write a book about his experiences. It is impossible to stress how great an accomplishment this book actually is. Having done cognitive therapy with people who are trying to return to work or school after their injury, I have seen up close and personal the process of redefining yourself in its aftermath.
The process one goes through in brain injury rehabilitation can be a very personal and intense one. You have to take a long look at what you can and cannot do, and make serious decisions about the path your life will take, all while trying to understand things like why you can’t do a simple word search puzzle when before your injury you could finish most of the Sunday crossword. Making the leap from there to deciding to write a book takes a great deal of self-confidence. This book has been a labor of love for Joe and a terrific challenge for him as well.
It became clear to me that the process of recalling events and writing them down was having a significant effect on Joe’s cognition in other areas. To understand how important that is, one has to understand the basic assumptions about brain injury over the last twenty-five years. Back when Joe was injured, there was no rehabilitation for cognition. If you were injured in an accident, you received rehabilitation for your physical injuries, but nothing else. Even as recently as twenty years ago, there were only a handful of places that even attempted to rehabilitate people with brain injury. That is part of the reason why the Brain Injury Association (then called the National Head Injury Foundation) was founded. (Check out Appendix C in the back of this book for information about this and many other fine organizations.) The amount of information available to families up to that point was almost nonexistent. Today, a person can expect to receive inpatient therapy for both physical and cognitive deficits following an injury. Even so, until quite recently the basic assumption has been that a person makes the bulk of his or her improvements in the first year post injury. After that, progress seems to slow, and by the time two years have passed, there is not expected to be significant improvement.
What we are beginning to understand now more than ever before is how dynamic the brain really is. In the last few years, it has been discovered that the brain does indeed seem to generate new cells. It had always been assumed that you were born with all the brain cells you would need for your life. We also know that it might be possible for damaged brain cells to heal. There is still much left to understand about the workings of the brain, and how these new findings might be applied therapeutically, but it has changed the perspective of many researchers.
In Joe’s case, however, there was no “magic bullet” or magic pill (though he did tell me he started to take Ritalin under a doctor’s care, and that seemed to help him with paying attention to things). Even so, Joe undertook the “simple” task of starting to write down his life story. He soon discovered that the task was not as simple as he had originally estimated. So what made him continue? This is quite a complex, involved, long-term task, requiring the use of all kinds of memory – long-term, short-term, and sustained, to name a few. The world was telling him that what he was trying to do was much more difficult than he anticipated. At first, his usual response would be to react angrily, and stop the task. (For example, when he first came up with this idea and wanted me to tell him where to get his book published, my response was that he should focus on the book first, then figure out how to get it published as he got closer to completing it. I also told him we had no publishers calling us for books about brain injury, so the best I could do was give him a list of publishers we knew of that had published these types of stories before, or had published something about brain injury. His response was what I would call a less than friendly suggestion about what to do with my stupid association.) So what made him stick it out? Was it this decision that started to help him improve his memory and attitude? No one can say for sure.
What I definitely noticed over time was that as Joe worked on his book, his conversations with me became much more introspective and philosophical. As he progressed through his book he would call to get information or to bounce an idea off me. Even when I disagreed with what he was writing, he would now listen to my reasoning, and even though he still kept to his original assumptions, the process was much different than before.
I also noticed as he wrote the book that his perspective became much less egocentric. Instead of only wondering how something affected him, he started to ask questions about others. He started asking more about brain injury rehabilitation now versus twenty years ago, and wanted to know about the difficulties people with brain injuries have today. This was a radical change from previous conversations with him when his assumption was that if people get rehabilitation early for cognitive problems, the rest of their life is much easier. Just the process of starting to entertain the notion that you might have to change your perspective based on the information you receive from the world around you is often the start of personal improvement. That goes for all of us.
In the end, there is still a certain amount of the unknown in the progress Joe has made. I can say with some certainty that the process of writing his experiences down has helped him tremendously. This process is one he was heavily emotionally invested in. He wanted to see this through. That was part of why he was able to stick to this challenge more than he had to any other previous challenge. But what got him to start to see this as a challenge to be tackled? How did that “light bulb” come on in his head? That is the unknown, and continues to be the unknown in brain injury rehabilitation. But once that light bulb comes on, the ability to improve attitude, aptitude, and functioning improves dramatically.
In addition to illustrating that adversity can be overcome, this book offers several more specific things that I believe can be of great value. The first thing this book provides is a long-term view of brain injury. Many personal stories on brain injury today are about people who are three to five years post injury and are still learning to live with that injury. These books are important, no doubt. But what is not out there is a book about what happens ten or twenty years after the injury, a book that allows you to actually “get inside the head” of someone who has had to cope with this type of injury for the long term.
In 1960, more than half the people who sustained a severe brain injury died. The care and technology were just not there. More recent statistics for the CDC show that the mortality rate from brain injury seems to be around 20 to 25%. There are many more people living with brain injury today than there were just thirty years ago, so there is a big question as yet unanswered for society: What happens to someone who survives a brain injury in the long term? How do you learn to live with brain injury forever? Since there are no magic potions or panaceas, what we rely on is the experience of those who live it. These experiences are invaluable to others who are living with a brain injury who want to have some inkling, some little seed of an idea of what their life might be like in ten years, in twenty years. This book offers them a glimpse into that world. No book will offer all the answers. No book will tell you exactly what will happen. But in this book are “nuggets” of useful information and insights. You have to decide which ones will be most valuable to you. You have to choose which nuggets you will keep, and which ones you will pass over. This book is full of nuggets - useful insights and anecdotes that describe adversity overcome, and, more specifically, life with a brain injury at a time when no one understood brain injury. It describes the challenge of getting help and of getting people to understand your experiences. It is a book about life, about challenges, and about the spirit of meeting a challenge -- even one that lasts a lifetime. I highly recommend writing down one’s experiences to any reader who has sustained a brain injury. Whether or not these experiences become published as Joe’s have been, the process itself might be part of an increased understanding of your injury as well as the first steps on a path that leads to living the life you are capable of living.
Life does go on after a brain injury. Just ask Joe Blakemore.
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Gregory Ayotte has a B.A. in Psychology and is currently the program director for the Neurotrauma Registry, an online directory of brain and spinal cord injury programs. He is also the former director of information services for the Brain Injury Association of America. Mr. Ayotte writes this foreword not as an official endorsement from either organization, but as a friend and admirer of Mr. Blakemore’s.
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