A brain injury happens to one family member yet affects the lives of everyone in the family. The first few days following brain injury are filled with confusion and, in most cases, will be followed by weeks, months and years of more confusion and frsutration.
How many times have we heard during the debate about reforming America's health care system that we don't want to mess up the best health care system on earth? Dr. Judith Falconer wrote, "Raised with the belief that medical skill and technology could repair damaged bodies, you assume that the injured individual will recover and resume life with few, if any impairments. Maybe there will be a limp or some scars, but the person will be the same person you always knew. After all, doctors cure people, don't they?"
Dr. Falconer added, "Unfortunately, head injury is unlike other illnesses and injuries. You discover that little is known about recovery and that the few available treatment programs are incredibly expensive and located hundreds of miles away. Physicians providing treatment may simultaneously relay prognoses which range from total recovery to little hope."
Somehow, the best health care system in the world begins to look a lot like a high school science experiment of try this and see if it works. And that assumes you have enough money or other resources to pay for the experiments!
Confusion About Brain Injury
Confusion begins in the medical community. Some patients are given a brief examination and sent home. Family members of other patients may be told the chances for survival are very, very slim. Even the words we all want to hear, full recovery, are sometimes mentioned.
Lawyers tell us that ten witnesses to an event will tell ten different stories about what happened. Ten family members listening to a doctor may come away with ten different perceptions of what was said. When Beth and I wrote Brain Injury Survivor's Guide we had a copy of all her medical records, nurses' notes and numerous notes written over the years that followed. Beth's mother read the book and said, "I don't remember it happening that way."
Victim Confusion
We call the person who suffers a brain injury a victim because, truly, they are a victim of circumstances. Something out of the ordinary happened to them, over which they may have had no control, and wreaked a substantial change in their lives.
Memory problems are usually the first source of confusion because the victim cannot remember people or people's names or words or any of a billion other things. Memory problems continue to manifest themselves as more things are attempted. We discovered that Beth had forgotten how to cook and, even, how to put on her makeup!
No one would know she had forgotten how to cook unless they were present when she made the attempt. Each day more and more things are attempted and more and more memory problems are discoverd.
Cognitive problems are closely related to memory problems because many decisions we make are based on past memories. Beth could not pass a simple math test because she had forgotten the multiplication tables. That's just one example.
Confusion leads to behavioral problems. The brain injury victim cannot remember things they know they should be able to remember. Nor can they process information they know they should be able to process. Does this lead to anger or self-pity or guilt and depression? Certainly it does. Emotional outbursts are common.
Family Confusion
Assuming you received a little information about brain injury from your doctor, you are now at home seeing firsthand the manifestation of memory, cognitive and behavioral problems. It is easy to become overwhelmed by it all.
Twenty months after Beth's brain injury we were given a book that told us what to look for as potential problems. Like we hadn't seen nearly all of them in the past twenty months! The book we received stated that it was written for brain injury victims and not family members.
On one page was a flow chart with box 1 connected to box 2 connected to boxes 3, 4, 5 and 6 connected to box 7 connected to box 8 which connected back to boxes 3, 4, 5 and 6 which were connected to one another. Underneath the chart were these words:
"Refer to diagram #1 above as you read along...Notice the arrows going back and forth among the boxes with the different problems. These arrows mean that these problems affect one another. For instance, if one cognitive problem you have is misperceptions or distortions or others' actions, then you might feel unnecessarily angry or depressed. Next, notice the arrows proceed from the four problem boxes -- cognitive, emotional, behavioral and physical -- to psychosocial problems. This implies that these problems can combine to create psychosocial problems or problems adjusting to everyday living activities..." This paragraph continued.
Now, even if this was written for family members who had no memory or cognitive problems, what did you learn? Look back at what I wrote about Victim Confusion. Memory problems cause cognitive problems and both of them cause behavioral problems. That is what the flow chart and two paragraphs were saying.
So, how do you deal with the interacting problems? Well, the book is silent. It told us about problems but not a word about how to work with those problems.
That, of course, is one reason we wrote Brain Injury Survivor's Guide and why we included over two dozen step-by-step strategies for dealing with them. Recently we received a note from a brain injury victim in the northeastern part of the United States. In part, it said, "Your book is spoken about in my TBI group in NJ with great reverence."
