Why People Don't Understand You
For many years it was difficult to figure out why people with TBI were so often misunderstood by the people who were not injured. These misunderstandings affect all aspects of life. Mistaken ideas affect marriages, parent-child relationships, friendships, extended family, neighbors, doctors, psychologists, community workers, employers, customers--they affect relationships with just about everyone.
My first instinct, as with most “educated” professionals, was to blame the survivor. The misunderstandings occur because the survivor does not communicate effectively--he/she does not express feelings clearly, and does not always read the feelings of others properly. While these are certainly important problem areas in recovery from TBI, I have changed my mind about the cause of the misunderstandings. At this time, I place more of the blame on the uninjured people. The worst misunderstandings often stem from wrong ideas about brain damage held by people in general, as well as medical specialists who “should” know better.
The problem stems from a stereotype. A stereotype is an image that sets one group of people apart from people in general, often an exaggerated or inaccurate picture. Racism is based on racial stereotypes, just as ageism is based on stereotypes about the stages of human development. There are professional stereotypes--for example, the idea that all lawyers are conniving, greedy exploiters of misfortune, the notion that all teachers are fat, narrow-minded bullies who use their age advantage to exert control over their students, or the belief that all used car salesmen are silver-tongued hustlers.
In our culture, there is a stereotype of a person with “permanent brain damage” as stupid and physically and mentally out of control. A popular logo from Grateful Dead records shows a disheveled, bucktoothed young man hoisting an ice cream cone into the middle of his forehead instead of bringing it to his mouth. In the punk era, teenagers who got staggeringly wasted wore tee shirts proclaiming their brain damage, as if a brain injury made someone act extremely stoned and socially degenerate.
I have told thousands of hospital patients that they have permanent brain damage, or a brain injury, or a brain disorder, or cognitive impairment from an injury or illness. Most of them looked shocked and protested that they were not brain damaged. They didn’t ask what I meant. They assumed that they knew what it meant to be brain damaged. And they knew that they did not act stupid, staggeringly stoned, or bizarre. They brought their ice cream cones to their mouths and not their foreheads.
A person who believes that permanent brain damage must cause stupidity and bizarre behavior will not recognize the real brain injury in their spouse, child, friend, employee, student, patient, or self. And the research verifies that most survivors, once they are at least one year post injury, are not seen by other people as brain injured. When symptoms like impulsive behavior or inattentiveness to the other person show up, the partner almost always gives the symptom a psychological interpretation--seeing the survivor as selfish or distant or uninterested or unmotivated, rather than brain damaged. This explains why so many love relationships, friendships, and jobs come to an end with the other person angry. It would make no sense to get mad at a person’s brain symptoms, but people get mad, and end relationships, when they see their partner as an incurable “slacker.”
Why did the military discharge most of their brain-injured soldiers without getting them any medical help? It was because they looked so normal. They did not look “permanently brain damaged.” Why are 99 out of 100 severely brain injured public school students not receiving the special services that are required by law? Their parents and their teachers see them as normal. Why do so many friendships end badly after TBI? The friend does not recognize the way in which the symptoms of injury interfere with the friendship, and instead sees the symptoms as the actions of a “bad friend.”
We may be nearing the turning point in which people learn to see brain damage in a different light, more accurately. During my childhood, people with epilepsy were often seen as insane and people with alcoholism or drug addiction were seen as immoral degenerates. Gays were seen as psychiatrically disturbed. All of these stereotypes were corrected within a single generation, through a combination of media attention and education. GiveBack is the kind of organization that can lead the way in correcting misunderstandings, by showing people that survivors of brain damage are normal in most ways, and can be truly impressive citizens.
University of Central Florida opens on-campus TBI program for UCF students
Dr. Schutz and Dr. Rivers of GiveBack, in conjunction with Dr. Janet Whiteside and the staff of the Communication Disorders Clinic, have opened a unique campus-based academic cognitive rehabilitation program. This program applies the principles of self-therapy to processing college-level information, studying, test-taking, and time management.
A research study they conducted with GiveBack Assistant Director Emilio Lobato indicates that approximately 8,000 current students sustained significant injuries, while approximately 2,000 are at risk for academic disability. If you are a UCF student interested in this program, please contact the clinic at (407) 882-0468.
Head injury refers to brain injury sustained after birth due to trauma from a motor vehicle accident, a fall, a blow to the head, a weapon wound or some other source of damaging impact. Although the after-effects of a head injury often include losses of oxygen and blood supply as well as blood clots, brain disorders caused by stroke, oxygen loss from heart attack, choking or drowning, poisoning, infection, tumors or diseases (such as multiple sclerosis, Parkinson's disease, Huntington's disease, etc.) are not considered to be head injuries. Brain disorders due to inherited conditions and birth injuries, including attention deficit disorder, learning disability, cerebral palsy, obsessive-compulsive disorder, Asperger's syndrome, autism, mental retardation and schizophrenia are also not considered to be head injuries. Some of the information provided by GiveBack, Inc. may be relevant and useful to people with these brain disorders that are not head injuries, but users should be aware that parts of the information will not apply, and that many issues important to those brain disorders will not be discussed by this organization.
Head injuries are traditionally classified into the categories of severe, moderate and mild. Severe injury, which is the focus of GiveBack, is indicated by the presence of a focal injury (see below), a coma in excess of two hours, or a memory gap around the time of injury in excess of eight hours. Those who have mild or moderate injuries are welcome to participate in GiveBack, but they should be aware that the GiveBack materials are designed for symptoms that are more intense than their own.
Head injury affects the brain in two ways: focal damage and diffuse damage. Focal damage means that a specific area in the brain has been destroyed. Focal injury results from a penetrating wound such as a gunshot, or when a broken piece of skull is driven into the brain, or a spot that takes severe damage (called a concussion), or a blood vessel explodes where it passes through the brain, or a blood clot forms on the brain (called a hematoma), or an area of damage turns soft (called encephalomalacia). Penetrating wounds and damage from a shattered skull can be easily seen with the naked eye, but all other focal injuries can only be detected when the skull is opened by a neurosurgeon or visualized by a special brain scan (CT, MRI, PET).
Diffuse injury refers to the microscopic damage to brain cells that is produced when the brain is subjected to strong forces such as the impact from a car crash. Coma and memory gap are the main evidence of diffuse damage. The longer is the coma, and the longer is the memory gap, the more diffuse damage there is. Diffuse damage is the main factor that determines impairment (lost motor skills), disabilities (lost abilities to accomplish real-life tasks) and handicap (loss of the opportunity to serve in real-life roles such as jobs, relationships, friendships and community positions).
Science is beginning to fix damaged brains
We have been waiting for many years for research scientists to learn how to link the brain with computers, and use the computers to supply missing signals or support weakened energy systems. Now the first reports are coming in of brain implants being used to "wake up" a patient who was in a state of deep unresponsiveness for many years. You can see the link to his story on our "Resources" page. This is the case of a young man whose brain was so badly damaged that the brain stem could not wake up the thinking centers. After a year of stimulation treatments, implanted electrdes have succeeded in waking him up so effectively that he can perform simple actions, speak, recognize his family, he has in a real sense "come to life" thanks to this new technology. This is only the beginning of a long story, as there will be many different ways to program and use these brain implants. It still seems beyond our wildest hopes to imagine an implant that will help to compensate for the diffuse effects of a head injury, but who can say how long it will take for that to happen. While these developments don't offer anything at this point to those of us who can walk, talk, get around in the community, and do things on our own, we should celebrate how much they could mean for our brothers and sisters who are bed bound and unable to respond, and for their families.
--Dr. Schutz
Bob Woodruff's story
The recovery story of ABC News anchorman Bob Woodruff has been receiving a great deal of media attention this week. The gentleman looks terrific, and on film, except for a few head-injured moments, sounds terrific. His story is being told as a heart-warming "heroic recovery accomplished" by the TV producers. To his credit, Woodruff is not playing along. If you listen closely, you can hear him clearly saying that he is still recovering and is not normal. Between his candor about himself and the reporting he is doing to expose the inadequate help veterans are receiving, the general public is getting some badly needed education.
What the stories have not talked about so far is the long road of long-term recovery, how little the fancy services at even the best government hospitals prepare people for that, and how difficult it is for all survivors to get back a productive career, an active social life, and full participation in family and community. We can only hope that when the hype has faded away, Woodruff will continue to investigate and be allowed to discuss the hard truths of recovery on prime time TV.
Shocking Developments in Research on TBI
Three years ago, Terry Wallis amazed the medical world by coming out of a coma after 19 years. He not only became responsive, but able to speak and interact and even recognize his mother. This kind of late recovery is unexpected and our present science struggles to explain it. Terry was transported to Robert wood Johnson Medical Center, where he was given a battery of tests and examined by Dr. Joseph Giancino, one of the leading experts on extremely severe brain injury. Terry’s brain had been so badly torn up by his injury that there was almost no organized activity visible on the brain scans. Although very little professional therapy was provided for him, his wife and mother declared that they were going to work full time to try to help him come back to a higher level of functioning. Dr. Giancino told his family that they should not expect to see him get any better, although no one could be certain about what the future held.
In March of 2006, Dr. Giancino and other medical researchers ate their words in public. Terry has in fact gotten much better. Not only has his speech and his self-care improved, but some kind of communication channels in his brain are working more or less normally again. This kind of improvement, documented by MRI and PET scans, is even more shocking to the world of science than his waking up. It indicates that at least in this one case a disorganized brain can get re-organized. The experts are still trying to figure out what they have learned, but they admit that there are probably pathways to recovery that are more effective than they ever imagined.
Although I am as stunned as the rest, I think this case may make more sense to us at GiveBack than it does to the brain scientists. We know that effort produces recovery–it not only makes coping happen, but actually makes the brain work better. The hours Terry’s wife and mother have put in trying to motivate him to do things may have paid off in a huge way. When you ask what you can do to help yourself or your family member, don’t forget about Terry Wallis. He achieved some recovery that everyone was sure was impossible. Trying your hardest can make a difference!
Dr. Larry E. Schutz
Founding Director, GiveBack Inc.
DISCLAIMER
GiveBack, Inc. does not and will not provide any kind of medical, psychological or other professional treatment, evaluation, service or opinion, nor does it or will it charge any fees. GiveBack, Inc. members share personal experiences and ideas for the purposes of encouraging and inspiring the recovery efforts of others in the community of head injury. Membership in GiveBack, Inc. is not a substitute for professional treatment.