I'm hiding behind my brain injury???

10/11/10 Monday
The start of another week. I was up at 4:30 with much on my mind. Finally talked with the guy we’ve had issues with, yesterday. It was good to at least have conversation but it brought little resolution, at least not for Cherie and I. He’s upset that I dared to talk about it in my blog. The blog is a journal of the major happenings in our life and what they did was major. He asked that I no longer mention their names, so I won’t. I’ll write all the details in my private journal so there’s a record of it. At least I learned that he read the emails I sent, that was a surprise as I figured he would just delete them as soon as he saw who it was from. What bothers me about this is the aloofness they maintain. “We repented and forgave you so have moved on” was the statement made. Evidently they are unconcerned that they have left in their wake hurt and brokenness and have no desire to take responsibility for that or to even attempt at repairing the damage. I would at least like an apology to my wife, for her pain is the deepest. When I mentioned that the response was “She’ll just have to walk through that herself”. It must be nice, to wave a magic wand and absolve yourself from all responsibility for your words and actions and carry on life as if nothing happened. I make mistakes all the time and work hard to correct them, to make right what was wrong. To me, that’s part of the definition of what it means to be a man, and a Christian. We will give an account for every word we speak and things we do. Part of that covers how we try to repair the damage we’ve done, a big part of it.

Today will be busy. I plan on visiting the widow and doing some work around her house to help her out. Her health is better now as the stomach flu has run it’s course. Depression is an issue she is battling, one I’m very familiar with. I’ll pick some tomatoes and peas to take to her. Don’t know if she likes okra but I’ll take some of that as well.

While in town I’ll stop by the Texas VA reps office and see if he’s working on Columbus day. Doubt he is but you never know. We need to deal with that mess as it’s already hurt us bad and there’s no telling what they will do next.

Saturday we attended the Teen Challenge fundraiser banquet. It’s good to hear the power of God to change lives and free people from the ravages of drugs and alcohol, along with the damage done to many in their youth. Some of them had gone through all kinds of 12 step programs and rehab with no success but through the power of God and the Teen Challenge program were set free. I was surprised at how many people we met there that we know. I guess that means we’re running in the right circles.

A comment was made to me about this sudden spirituality in my life. The comment came with a kind of disdain attached to it, an implication that this wasn’t real or was a put on. “Just two years ago you were telling me about your struggle to believe that God existed” he said. In that conversation was the accusation that I was “Hiding behind my brain injury”, thrown out not once but several times. I guess that’s part of his process of justification and rationalization and somehow makes him feel better. I don’t hide behind it or use it as an excuse that allows me to say or do things, it’s a reality that I deal with daily. With it comes not just the slowdowns, that sometimes take out whole days, but the pain, paralysis on the right side, and emotional control issues. Anger, depression, frustration, and a reduced ability to process information are all facts of my daily life that I must deal with and work to overcome. Do I “hide” behind it? No, I talk about it in an attempt to get understanding not just for me but for the millions of others in this country who have had strokes and Traumatic Brain Injuries. (I’ve had both)

This “Sudden spirituality” isn’t sudden. It’s part of the miracle of my life, the restoration of things back to the way they were in 1981, when I fell out of that tree, broke my neck and back, and suffered an undiagnosed Traumatic brain injury. I was an ordained minister then, helped build a church, ministered to people on the streets and in institutions. One of the amazing things about waking up from the coma in December 2001 was that while I couldn’t remember how old I was or many other things, I could remember scriptures, lots of them. This loss of faith isn’t unusual with brain injuries, in fact there is much written about it. Part of that is because the Amygdala is often damaged due to it’s location near the brain stem. It's name is latin for almond which relates to its shape. It helps in storing and classifying emotionally charged memories. It plays a large role in producing our emotions, especially fear. It's been found to trigger responses to strong emotion such as sweaty palms, freezing, increased heart-beat/respiration and stress hormone release. It is also been identified as the portion of the brain that is most active during religious experiences.

I guess I’ll go into a quick treatise on the brain here, in an attempt to help some understand the complexity of the brain and problems that come with an injury. When you look at me, or many others with TBI, you can’t tell there’s something wrong. Therefore we are judged on the basis that we are like everyone else with little, or no consideration of the fact that our brains have been damaged, and thus effect our behavior. I tell people this and it seems to just go through one ear and out the other. One of the most important things to do with a brain injury survivor is to talk with them. Just talk, reason, try to understand where they are coming from. Isn’t that what Christians are supposed to do anyway? Love your neighbor as yourself?

This information is from the Center For Neuro Skills, (CNS) an organization with offices in California and Dallas, Texas that is dedicated to the rehabilitation of traumatic brain injury survivors. Their website is http://www.neuroskills.com, and I’d like to encourage you to visit and learn more about TBI and us, the survivors. Some of this information refers to a “mild” Traumatic Brain Injury. Mine has been classified as severe, therefore the miracle of my being alive and able to operate at the level I do is even more amazing. What throws people off is that I retain some of my former Mensa level intelligence. They seem to think that if you have a brain injury you should be stupid. I can be, for sure. I do a lot of stupid things and forget if I took my medication minutes after I did but am still smarter than many others.

Traumatic brain injury (TBI) can significantly affect many cognitive, physical, and psychological skills. Physical deficit can include ambulation, balance, coordination, fine motor skills, strength, and endurance. Cognitive deficits of language and communication, information processing, memory, and perceptual skills are common. Psychological status is also often altered. Adjustment to disability issues are frequently encountered by people with TBI.

Brain injury can occur in many ways. Traumatic brain injuries typically result from accidents in which the head strikes an object. This is the most common type of traumatic brain injury. However, other brain injuries, such as those caused by insufficient oxygen, poisoning, or infection, can cause similar deficits.
Mild Traumatic Brain Injury (MTBI) is characterized by one or more of the following symptoms: a brief loss of consciousness, loss of memory immediately before or after the injury, any alteration in mental state at the time of the accident, or focal neurological deficits. In many MTBI cases, the person seems fine on the surface, yet continues to endure chronic functional problems. Some people suffer long-term effects of MTBI, known as postconcussion syndrome (PCS). Persons suffering from PCS can experience significant changes in cognition and personality.

Most traumatic brain injuries result in widespread damage to the brain because the brain ricochets inside the skull during the impact of an accident. Diffuse axonal injury (Figure 1) occurs when the nerve cells are torn from one another. Localized damage also occurs when the brain bounces against the skull. The brain stem, frontal lobe, and temporal lobes are particularly vulnerable to this because of their location near bony protrusions.

The brain stem is located at the base of the brain. Aside from regulating basic arousal and regulatory functions, the brain stem is involved in attention and short-term memory. Trauma to this area can lead to disorientation, frustration, and anger. The limbic system, higher up in the brain than the brain stem, helps regulate emotions. Connected to the limbic system are the temporal lobes which are involved in many cognitive skills such as memory and language. Damage to the temporal lobes, or seizures in this area, have been associated with a number of behavioral disorders. The frontal lobe is almost always injured due to its large size and its location near the front of the cranium. The frontal lobe is involved in many cognitive functions and is considered our emotional and personality control center. Damage to this area can result in decreased judgement and increased impulsivity.

CEREBRAL CORTEX Frontal Lobe: Most anterior, right under the forehead. (Of the ten percent of my brain that is gone, no longer exists, much of it was from this part of my brain)

Functions:
How we know what we are doing within our environment (Consciousness). How we initiate activity in response to our environment. Judgments we make about what occurs in our daily activities. Controls our emotional response. Controls our expressive language. Assigns meaning to the words we choose. Involves word associations.

• Memory for habits and motor activities.
Observed Problems:

• Loss of simple movement of various body parts (Paralysis). Inability to plan a sequence of complex movements needed to complete multi-stepped tasks, such as making coffee (Sequencing). Loss of spontaneity in interacting with others. Loss of flexibility in thinking. Persistence of a single thought (Perseveration). Inability to focus on task (Attending). Mood changes (Emotionally Labile). Changes in social behavior. Changes in personality. Difficulty with problem solving.

• Inablility to express language (Broca's Aphasia).

Note; “Changes in social behavior” is a big deal. It’s been nine, going on ten, years since my last TBI (I’ve had three that can be confirmed, plus a stroke) and I’ve relearned many social skills, but have a long way to go. This next section describes very much my life since I woke up. Many of these problems I’ve overcome but it is always a battle.

What to Expect after TBI
By Tom Novack, PhD

Presented at the Recovery after TBI Conference, Sept, 1999
In this edited transcript, Dr. Novack references data from the Injury Control Research Center (ICRC) study, funded by the Centers for Disease Control, UAB ICRC, and the UAB Traumatic Brain Injury Model System projects.
Cognitive Difficulties after TBI

The cognitive difficulties experienced by people after traumatic brain injury (TBI), often have more impact on their recovery and outcome than their physical limitations. Most people with traumatic brain injury, even those that are severe in degree, are ambulating after their trauma. Within a year, 90% of them are getting around independently and able to care for themselves. It is however, the cognitive difficulties and behavioral problems that have the most significant impact in terms of one independence.

TBI has a generalized effect, that is the entire brain is affected to some extent. This is different from what occurs with a stroke, where a specific hemisphere or section of the brain is affected. An individual may have aphasia because they have a left hemisphere stroke or significant neglect because they have a right hemisphere stroke. With head injury there are not, for the most part, patterns of significant deficits in some areas with intact abilities in other areas. Every ability, in a lot of cases, is affected.

It helps to think of cognitive abilities as a hierarchy, beginning with very basic skills and then moving on to more complex ones.

• Arousal or alertness is first in the hierarchy. This is the foundation for everything else. An individual first must be aroused in order to do anything cognitively or behaviorally.

• Sensory and motor skills are next. One must be able to sense the world in order to operate in it and manage one's life. Sensing means having the use of one's senses, including vision, hearing, and touch. While few head injuries cause blindness, they can cause double vision or perceptual problems, making it difficult to interpret visual material. With regard to hearing, an individual very rarely becomes deaf as a result of a head injury. However, there may be problems in discerning discreet sounds or in processing auditory material fast enough to be able to keep up. Motor ability involves manipulating one's environment with one's hands, particularly performing basic skills.

• Attention and concentration are at the next level. These skills involve selecting what is important in the environment, as well as shifting one's attention to what is important. It may be easy to pick out what is important, but one must also be able to maintain attention and focus. Then as changes occur, one must be able to shift attention. All of these components of attention can be disrupted by a brain injury.

• Language skills or the ability to communicate with the world follow in the hierarchy. It's very rare that someone with a TBI loses all language abilities such that they cannot comprehend or express themselves. Language skill problems after TBI are more subtle. An individual may be able to express himself in a basic way, but be unable to explain complex things in a logical fashion. One of the more subtle problems that may exist involves word-finding skills. The individual cannot quickly access words from memory. When talking, they tend to talk around the topic. It is difficult for them to "hit the nail on the head". It can be very frustrating finding that correct word.

• Spatial and constructional abilities are at the next level and involve spatial activities, such as drawing or building things and judging distances. This requires visual perception as well as being able to take a mental image and apply it in the environment through motor output. A complex series of events has to take place for this to occur.

• Memory abilities come next. Individuals with traumatic brain injury, even severe injury, often have relatively good recall of events that occurred prior to their trauma. There may be gaps for a week or a month before the injury, but this usually fills in over time. All of that information is already in the memory banks. The head injury does not take that away. It may interfere somewhat with the ability to retrieve some information but it does not erase the existing memory.

The problem faced by people with TBI is with encoding and retrieving new information. Memory for new information is usually the most severe deficit experienced by people with traumatic brain injury. There are several reasons why memory for new information is difficult for people with TBI.

A major factor is the neurochemical cascade that takes place as a result of the TBI that effects the hippocampal areas of the brain, which are essential to memory encoding. In addition, disrupted executive skills may have a significant impact on memory functioning. As a result the individual may not be able to attend to information, organize information for encoding, or appropriately scan memory to retrieve information.

Think of the brain as a very organized filing cabinet. Each drawer is labeled and all the files are arranged and labeled. To locate information you open the correct drawer and locate the right file. With a head injury, it is like the filing cabinet has been turned upside down and all of the files are in the wrong place and so it is hard to organize things again.

• Reasoning skills or the ability to solve problems are at the next level in the hierarchy. First one has to know that there is a problem. Individuals with head injury often do not recognize the need for a solution or they tend to be inflexible. They may come up with one strategy but if that does not work, they cannot think of an alternative. They will stick with that same strategy even though it's not working. The basic "if - then" reasoning that most people use, does not occur for these individuals.

• Intellectual abilities follow. Here we see a combination of many different skills that combine reasoning, memory, spatial skills, etc.

• Academic abilities are at the final level, combining many different skills. For someone who has been through a reasonable educational program, it's rare to lose academic abilities following a TBI. Injured people can usually still read, write, and do math because those are ingrained skills; they're already in the memory banks to the point that the skills are almost automatic. The problem academically is that the individual is not able to add to these skills after the injury because of the memory and reasoning difficulties.

Behavioral/Emotional Difficulties
Behavioral and emotional difficulties cannot be separated from the cognitive difficulties that accompany TBI. Ninety-nine times out of 100 when there is a behavioral problem it is tied to a cognitive problem.

• Restlessness and agitation are common problems, particularly early in recovery. At that point of recovery, people with TBI have significant problems with attention. Restlessness is a normal reaction for a person who cannot pay attention or is easily distracted. The same thing applies with reasoning. When an individual cannot reason effectively enough to accomplish a goal, they tend to be restless and thus more agitated.

• Emotional lability and irritability exhibited by the individual with the head injury are frequently described by family. To understand what is happening, think about it in terms of executive (reasoning) skills as a gating mechanism. These gates keep behavior in control. A lot of what the frontal lobes of the brain do is inhibit actions that are not consistent with our goals. They keep you from doing things that you should not do. For example 3 year old children, whose frontal lobes are not fully activated, do whatever comes to mind, sometimes to their detriment.

When you have a significant brain injury that involves the frontal areas, the gating mechanism can be knocked askew such that the person cannot inhibit behavior as well as prior to the injury. The individual is not reasoning effectively and cannot figure out what to do in a situation to solve a problem. To get the attention needed or to generate a response they may get angry or exhibit other inappropriate behavior. The gates that kept behavior in control are knocked askew and things come out that used to be kept in.

• Confabulation is another behavior problem. A patient may tell staff they were at the Talladega races last weekend when actually they have been in the hospital for the past 2 months. The person is not lying; instead their memory is playing tricks on them. They are not able to organize their memory and therefore cannot retrieve information accurately. This person may have been to Talladega, but in the distant past. Their organizational process, called "time-tagging", of their memories is often disrupted and hence their inaccurate recall.

• Diminished insight on the part of people with TBI is a frequent complaint among caregivers. Self-awareness is a very unique skill of adults. As adults we are able to step outside of ourselves and look at our performance and abilities. This involves being able to process information at a very high level, requiring attention, memory and reasoning abilities. Often a person with severe head injury does not have a very good understanding of their deficits or the impact of those deficits on daily life. They will deny cognitive difficulties that are obvious to others or feel they can engage in activities, such as driving, even while acknowledging significant problems.

• Impulsivity/socially inappropriate behavior results from both diminished reasoning and lack of inhibition. Both have a lot to do with frontal area functioning and the gating mechanism that has already been described. Many families describe the person with the head injury as saying hurtful things and that they are insensitive and blunt. They say things that come into mind without due consideration of the situation. It can be a subtle problem or it can sometimes be severe. The injured person is not able to reason that "If I say this, then something undesirable is going to happen." The appropriate inhibition is not there.

• Poor initiative can be confused with depression. Frontal area injury can affect the ability to plan and to organize. This results in a person not initiating activity. They will sit quietly and contentedly. If directed to do something, they will do it. But they will not go any further than that. The if/then reasoning skills are not present. In addition, attention problems may prevent the individual with TBI from focusing on something long enough to be able to carry through with a plan.

• Lack of emotional response is demonstrated by a lack of initiative and a flattened affect. The individual does not smile or show any emotional response to things going on in the environment. An example is an adult with TBI who was told by his mother that he cannot drive anymore. His reaction was to put his keys on the dresser and walk out without exhibiting any reaction or emotional response. Most adults would react differently. The emotional response is just not there.

• Paranoia or blaming of others for negative events is a natural tendency when individuals do not reason effectively. This can be compounded for individuals having traumatic brain injury because they are not reasoning well enough to know the logical explanation for what is happening. They automatically assume that someone else is doing something to them and project blame automatically. If you are not able to reason through things, you assume that somebody is doing something to you. When the person is not able to remember something that they did, they blame someone else.

• Depression is a common problem for individuals after head injury. The issue is how much of it is organic, related to the brain injury itself, versus reactive to the situation. Fortunately, in either case, the condition is usually responsive to medication and counseling. The danger is that depression can compound the problems that already exist by decreasing activity levels and undermining the expression of skills possessed by the injured person.

• Anxiety occurs, in part, because of reasoning difficulties. The inability to comprehend a situation or anticipate what is going to happen leads to anxiety. Three situations in particular seem to generate anxiety among people with TBI: 1- Riding in a vehicle in heavy traffic, 2- Being in crowds and 3- Being around small children.

That’s enough of that. My hope is the person who said I hide behind my TBI will read this, and perhaps understand his ignorance and the total lack of understanding and tolerance he has displayed, all the while talking about God.