Traumatic Brain Injury Group

You are reading this family guide because your husband, wife, son, daughter or friend who sustained the head injury (whom I will refer to as “the survivor”) is a candidate for self therapy. Self-therapy begins when he or she reads the self-therapy manual. That guide is divided up into relatively brief chapters, and the subject matter of each chapter matches the chapters in this book. The first chapter summarizes the basic facts about injury and recovery which were discussed in the introduction section of this volume. (If you have not already done so, please start reading there. This introduction section contains important basic facts.) It spells out how incomplete medical recovery is, which is why survivors need to learn how to “fix the brain.” It ends by explaining that a self-therapy book helps only those who are willing to learn.

The most important fact from that chapter is that survivors stop recovering while in a state of partial disability, and almost always remain just as disabled twenty years later. Although we don’t yet have any research that extends beyond 20 years, the fact that no change is seen after the first few years indicates to us that the disability is probably permanent. Some of these survivors are disabled by surprisingly mild symptoms that would be pretty easy to fix, but they don’t fix them. Specialists in head injury rehabilitation have discovered that most head injury disability can be fixed, but, again, most survivors don’t do that.

Survivors don’t adapt to the disabling effects of their injuries because of three obstacles to learning. First, most survivors have trouble remembering new information of all kinds. Some have trouble reading the information, more have trouble with their mind wandering when they try, and most tend to forget a lot of the information they read.

This problem is fairly easy to handle. Although I will discuss the solutions in detail later, it is important to know how to get past this obstacle right now. Most survivors can learn small amounts of material, so the self-therapy manual is organized into very short chapters. It is best to read it one chapter at a time and then think about it and discuss it. Those who have the most serious reading problems may need help in reading and simplifying the material. Memory problems can also be countered by writing down the main points of a chapter, for easy reference if the survivor should forget some of it later on. If the survivor cannot understand the material even with this kind of help, he or she is not ready for this kind of self-therapy. Since people with severe head injuries show a great deal of improvement over the first year to two years, and sometimes longer, this improvement may make it possible to go forward with self therapy later.

The second, and most important, obstacle is the inability to directly perceive the effects of the injury. In traumatic brain injury (TBI), the brain does not feel injured. It rarely hurts or feels strange, and relatively few symptoms are obvious to survivors. Most survivors overlook the errors they make because of the lasting effects of their injuries. When an error gets noticed, most survivors don’t realize that it was caused by their own, defective thinking and self-control. Even when a survivor recognizes the mistake, the injured brain usually serves up excuses that prevent learning about the injury. Serious physical disability is unusual after TBI, but if there are physical symptoms they almost always get recognized. In many cases, survivors also learn that they are forgetful. But most survivors feel sure that their thinking, behavior, personality, and abilities to get things done are unchanged or changed very little, by the injury. Common head injury symptoms like unreliable judgment, undependable follow-through on assignments and tasks, inappropriate behavior toward others, reduced frustration tolerance and self-control, and increased emotionality are usually denied no matter how serious they might be. By failing to recognize that these are permanent problems, survivors learn nothing from the mistakes they make on this basis, repeating the same errors again and again. In our TBI recovery society, GiveBack, we refer to these mistakes as “head-injured moments,” a term I will explain more fully in the next chapter.

One of the things that makes head injury so confusing, not just for the survivor but for everyone, is that most of the problems it creates do not take the form of lost abilities. Most survivors still know how to do everything they could do before. Information learned in school, job skills, driving skills, computer skills, the “how to do” all of these activities is not lost. We think of these skills as the basis for intelligence, and the fact that these skills return shows that TBI does not rob the person of intelligence. In turn, if the person is no less smart, we tend to think that they are mentally okay. If a person who has reasonable intelligence does sloppy work, makes “careless” errors, and repeats mistakes, we don’t usually look to a brain disorder to explain this kind of bad behavior. Instead, we tend to blame it on attitude, motivation, effort, desire to help out, personal standards, and character. We see smart, capable people who keep screwing up as either bad people or people with bad attitudes, not good people with bad brains. In the case of TBI, this is a huge misunderstanding.

You can see the misunderstanding if you look closely. People who have bad character screw up things that are important to others, while skillfully doing things that serve their own needs. But if you carefully watch a survivor, or even better, keep records of the mistakes, it turns out that many of them take place on tasks that are extremely important to the survivor. In other words, this is a person whose bad behavior hurts him/herself. In fact, the survivor shows a tendency to NOT be careful when being careful is most important to self-interest–when someone important is watching, when high stakes are on the line, when an error can cause danger, when learning new skills or how to deal with new situations, and when behaving well is expected (as in important relationships with friends, family, employers, and customers). Survivors forget to do things they want to do, forget their own possessions, fail to take advantage of opportunities in which they are interested, and make bad decisions that hurt them. But they also forget to do things for other people, fail to treat others with the expected courtesy, fail to meet their obligations or meet them with actions that are too casual, careless or poorly planned, and these actions tend to ruin the trust and confidence and even good will of friends, family, and employers.

A person who has been severely injured for two years or longer has had hundreds and probably thousands of head-injured moments without realizing that his or her behavior has become unreliable. The intelligence is still there, but it no longer controls what the survivor does well enough. Too often, actions are taken “on automatic pilot,” speaking or acting first and only thinking about it later on, if at all. This kind of behavior drives away friends, stresses family close to the breaking point, loses jobs, and makes life chaotic, yet the survivor still feels normal.

Another equally strange fact about TBI is that most survivors will indicate that they are pretty satisfied with their lives if you ask them. They may be poor, housebound, bored, lonely, or even depressed, but they somehow manage to not see anything wrong with their life. The injury has broken one system, but unfortunately it happens to be the system we use to evaluate how to deal with important challenges, how to solve problems, how to evaluate the results of action, how to evaluate the self, and how to evaluate life. Because of the way it got broken, it puts out a constant signal indicating that everything is okay: “I did okay,” “I am okay,” “life is okay.” And this signal is turned on full blast, which happens only when you have reason to be totally certain about how things are going. It is unimaginable to them that something could be seriously wrong with them, or with their life. Because of this brain malfunction, they refuse to accept the blame for things they do wrong, which appears stubborn and willful. Because of this symptom, they tend to be uninterested in therapy, and in brain injury education. It is this breakdown that makes them totally unable to adapt to the symptoms of the injury. It traps them in functioning not quite well enough to lead a normal adult life, and by doing nothing about it, most of them remain trapped forever.

It may sound like I’m making a big deal of this problem. I am. It is a big deal. This symptom keeps ordinary schooling, traditional rehabilitation, counseling, advice, and parenting from getting through to them. And for most survivors, perhaps as many as nine out of ten, it is a very sold barrier, like a brick wall. No explanation or argument or evidence gets around it. Naturally, if a person feels dead solid certain that there is nothing wrong with them, they are not going to want to read a book about how to do self-therapy. The last part of this chapter discusses your options in handling this obstacle.

The third obstacle is that even if by some miracle or special therapy, someone can get through to the person, convince him/her that something is seriously wrong, and explain the strategies that can be used to fix it; the person has to actually use the strategies in real life activities. In the world of rehab, it is called the generalization problem. It is another whopper of a problem. Fortunately, there are strategies to get around it, too. We’ll get back to generalization in later chapters. For right now, we need to worry about obstacle number two.

The first step toward recovery is the decision to find out more about the injury, which leads to starting to read the self-therapy manual. It does not necessarily involve believing that the symptoms of the injury are serious. Very few survivors–perhaps one out of every twenty—worry about being head injured and feel a need to learn more about how they have been affected. These unusual individuals welcome the self-therapy manual and read it hungrily. Even facts about their injury that go beyond their awareness are accepted for further thought and study.

It is not normal for survivors to believe that the things they read about TBI apply to their own injury. All that is needed to make progress at the first step is a willingness to be exposed to new information, not to believe it. In fact, many of my patients were still skeptical when they FINISHED therapy. In spite of half a year of work, and thousands of pieces of evidence about their injuries, they still tended to believe what their brain told them. But they at least recognized the possibility that their brain might be wrong, and so they learned what the other guy had to say. And that was enough. When they tried out their strategies in the real world, they found that things worked much better, and they often came back to me years later to tell me that they now realized that I had been right all along. All that is need is a mind that is open a crack.

Those survivors who eventually learn about their injuries begin learning out of curiosity, not out of a sense of needing to learn. That is also true of most family members. Right now, you probably are not convinced that the explanations in these books are scientifically accurate. You need to see for yourself. Maybe you need to read comments on these subjects written by other experts. That’s only reasonable–many so-called experts are not expert. However, there is one critical difference between your experience and your survivor’s experience. As you read about TBI, the facts will ring true to you. They will ring false to people with TBI.

So the challenge at this point is to encourage curiosity about the topic of head injury so that the survivor will read the Self-Therapy Manual as well as other information about TBI, and learn and think about these ideas that seem wrong at first take. If there is curiosity, and some learning, then the survivor may start to notice that a few of these new facts actually fit real life. That will produce a little more curiosity, which will produce more reading and more learning, and that sets a chain reaction into place. The survivor becomes more open, asks more questions, and starts to create a whole file of ideas about TBI that run contrary to his or her feelings. That is how the second step toward recovery gets taken. As the person discovers that his or her feelings about self and life are wrong, he/she begins to realize that a whole lot of new learning is needed.

Some survivors, especially those who are in the habit of learning from reading, are more likely to be naturally curious and to do the reading on their own. Others become curious when they run into something that captures their attention. For example, patients in hospital rehab programs have opportunities to see many other people with head injuries. They very quickly notice that the others act just like the book says they should. The more they read, and the more they watch the others, the more evidence they are gathering that head injury really does have these effects. At some point, they begin to ask themselves, “Am I like that, too?” And once they have asked themselves that question, the cat is out of the bag. Because once they know what the symptoms of head injury are, they begin looking for them.

What can you do if your survivor is not curious about the self-therapy manual? If you are curious to learn more about TBI, share that curiosity with your survivor. If you realize that you don’t know much about TBI, admit your ignorance on the subject. Point out that there might be good reason to learn more about it. But above all, be honest–don’t hype the material any more than you truly feel.

What should you do if the survivor says, “That’s yesterday’s news. That head injury isn’t affecting me anymore. I’m normal. Don’t you think I’m normal?”

Do you feel your survivor is normal? That question actually breaks down into two very separate questions. First, is your survivor unchanged by the injury? Is he or she the same person, with the same capabilities and tendencies as before? Almost all family members who have been living with the injury for more than a year say “no.”

The second question is, does the injury make the survivor an abnormal person, someone who should be labeled as defective and in need of special help? There is more difference of opinion among family members, and among therapists, on this question. However, as time passes since the injury, more family members say “not normal” in this way, also.

How should a caring spouse or parent treat a survivor? In our society, we have a standard that says that you treat a person who is ill or injured with support and encouragement, and you avoid calling attention to his or her symptoms. But if the symptoms are permanent, and the survivor is unaware of them, honest feedback may help the person to make progress, while supportive feedback that conceals unpleasant truths may help to hide the problems with which the person needs to deal. We think of TBI as a special case, in which the survivor’s need for honest feedback must come first. So if (and only if) a survivor asks me a question like that, I usually say, “I think you are normal for a person with a head injury.” Then I stop. If (and only if) they ask me what that means, I say, “You’re not crazy or stupid or incompetent, but you are different from the way you were before the injury. A head injury always changes the person.”Then I stop. If (and only if) they say, “How do you think I’m different?” I say, “You have head injured moments. I’m glad you asked me, because that means you’re probably ready to learn about them. I’ll teach you if you want to learn.” The principle that guides my answers is, never answer more than you’re asked, because the questions tell you what the person is ready to hear.

Just as some family members hold back on giving negative feedback about head-injured moments out of a sense of loyalty to the survivor, so other family members push hard to get their survivor to realize what is wrong. Criticism, whether it is constructive or otherwise, seldom “gets through” to a survivor, because the self-evaluation process functions so poorly now. Some family members try again and again to convince their survivor to be more careful, more thoughtful, more active, more considerate, and so on. When these suggestions are not accepted, the family climate can often turn hostile, with the survivor resenting the family’s input. Many families are stuck in this kind of an unpleasant rut, with harsh words going both ways and no recovery resulting. The family member who is most involved with the survivor, usually a mother or a spouse, may end up having lost all credibility if the conflict goes on long enough. Later, we will discuss ways to repair relationships that have become difficult in this way.

Consequently, if the survivor’s first reaction to the self-therapy manual is argumentative or rejecting, it is not recommended that family members try to “prove” that the survivor is malfunctioning and needs help. A direct approach like that is almost never helpful–it usually just makes the survivor sorry that the matter of head injury was brought up in the first place.

Most survivors benefit from having a “therapy partner” to discuss each chapter and to work together to set up self-therapy activities. That person should be the family member who is most available, credible, and honest. In a large family, it may not be the main caregiver. Sometimes a survivor does better with a close sibling or a dear friend as therapy partner. However, most families in today’s world are small, and most people who live in our part of the country (Florida) don’t have a big network of supporters nearby. The partner usually ends up to be the spouse or parent by default, even if the relationship is difficult.

When discussing the survivor’s reactions to the book, listen for skepticism and distrust, and don’t feel it necessary to discourage that reaction. Instead, offer to read up on TBI with the survivor, using the books and other materials listed at the end of these books, as well as other information from the authors that becomes available on the Web.

The most important fact for you and for the survivor to understand and accept is the critical relationship of the length of coma to the extent of symptoms and disabilities. The references from top rehabilitation scientists (Dr.’s Gronwall, Levin, Lezak, Povlishock, Adams, Gennarelli, Boll, Jennett and Teasdale) discuss this at length. (More specific details from the research on recovery are reviewed extensively in a chapter on How Recovery Works, posted on the GiveBack web site, excerpted from a book I wrote with my son, Michael.) All of this research says that the seriousness of the post-injury problems are actually determined at the moment of the injury. This is a fact with which rehabilitation patients cannot argue. All they can say is, “Maybe I’m the exception to the rule.” But those articles indicate that the rule doesn’t really allow exceptions. This fact about coma length serves as one of the main eye-openers. Occasionally, a patient will argue with this, by pointing out that how long you have a fever doesn’t determine the lifelong effects of an illness. My response is, “You can compare a brain injury to a spinal cord injury or an eye injury, because they all damage the nervous system. If you get hit in the eye so hard that it ruins your retina, you will always be blind. If your spine gets twisted hard enough, you will always be crippled. It’s no different with your brain. The harder it gets hit, the longer the coma, and the more damage you have to deal with from then on.”

It may also be helpful to get testimony to back up this point. Don’t expect to get any help from your physician, because medical school includes no training about the long-term effects of head injury. The best testimony comes from other injury survivors who have had successful recoveries. In GiveBack, former patients are the teachers. They advise new participants, “I didn’t think my injury was that bad, either. It took me a long time to realize that my brain had been totally changed.” We include seven autobiographies from these successfully recovered expedients on the GiveBack Web site (on the Red Discussion Board, under Recovery Stories). If you happen to meet a successful survivor, you may be able to get this kind of support in person.

If your loved one is hostile to the idea, and refuses, don’t force the issue. Do your own reading, and take notes in a therapy notebook you make for yourself. Let your survivor know that he or she is welcome to read what is in the notebook at any time. And then leave it at that.

You will notice that most of the chapters end with a paragraph discussing how to read more about the subject of the chapter. Most of these readings are written for professionals, and the language in them is difficult for others to understand. I believe that I should be accountable to my readers by directing them to the highest quality and most respected professional information, so that they can double check my ideas if they want to. If your survivor wants to try, it is a good idea for the two of you to do that together, armed with a medical dictionary. Reading articles of that kind is a lot of work, but you can usually make sense of them.

I want to end this chapter with a couple of important cautions. First, don’t look at self therapy as making professional therapy unnecessary. If you can get professional therapy, by all means get as much of it as you can. When it is over, there is a good chance that there will still be problems, and the self-therapy will still be available to work on those. If you would like to mention that you have been reading up on self-therapy to the professional therapist, he or she might get interested enough to check out the GiveBack this web site which has information for professionals as well as the general public. However, don’t be surprised if your therapist takes no interest. Professionals are not trained in school to understand what the limits of their knowledge are in specialty areas like head injury. Nevertheless, they can provide something that self-therapy can’t, which is skilled, hands-on training.

Second, if your survivor is physically violent with you, do not follow these instructions in this guidebook, as confronting your survivor could be dangerous for you. Head injuries tend to increase pre-existing tendencies toward violence, and physically abusive survivors are truly dangerous to their family members. A violent survivor should be dealt with by the mental health and law enforcement systems. That is not the appropriate job of a parent or spouse.