And the problems never cease, most days I want to die.
Frontal Lobe – the entire right-side of my body is partially paralyzed. I become aroused on my left side while the right is unresponsive. My coordination and balance suffer and my fine motor skills, dexterity, well they are no more.
Parietal – my personality took a nosedive and even the pastor of a church I attended was amazed at the difference between my e-mails and my in person speech. Pastor Dan said to me, “Your e-mails are so eloquent; I see why you’d rather communicate that way.” My speech is very quiet, at times slurred, and I have much difficulty finding the right word; in earlier years I had been accused of being drunk.
The Occipital Lobe – was affected along with my vision. Double vision is a constant also, though now 23 years later it is a problem only when tired.
Brain stem – my nerves and therefore my circulation is, well let’s just say, they are much less than desirable. I continue to suffer the effects of most all of these on a daily basis. There was a time back in ’88 or early ’89 that I thought my feelings were returning. I saw my doctor and was all excited because of numbness or tingling in my right arm. The doc soon lay to rest my feelings of jubilation. Dr. Rebecca said, “That may or may not be a good sign. Those feelings may never go away.” Twenty-three years later and that heavy arm still tingles as if it is asleep.
Unable to do my job any longer because the physical abilities and finesse required are gone. I tried going back to school but after three years of struggling desperately (unable to recall what I had just read and numbers, math being a hindrance and my anthropology instructor mimicking to the class, my poor speech) I stopped. However, I do have a reference letter from the head librarian:
Dear Sir or Madam: January 26, 1993
This letter of reference is for Mr. Steve Richie, presently a student at Inver Hills Community College and a work-study student in the library.
Mr.Richie has worked in the library for sixteen months. He has been a very dependable employee and has executed satisfactorily a wide variety of tasks such as circulation checkout, processing books, shelving materials and filing. Along with his many desirable qualities is an unfailingly good attitude and a keen sense of humor. He is polite with patrons and co-workers and has an instinctive urge to help people.
Mr. Richie, had a car accident about four years ago and was badly injured at the time. Once given little chance to live or to reasonably function, he now communicates and moves with near normalcy. In the sixteen months I’ve known him, his walking, speaking, and reading skills are clearly improved.
In addition to his work in the library, Mr. Richie has impressed me with his very strong determination to succeed. I’ve been consulting with him on a book he is writing. From those experiences I can attest to his hard work and his innate skill as a storyteller.
I have great respect for Mr. Richie’s determination and conscientiousness. He is on the road to doing really good work.
I also have a reference letter from my instructor at the computer school I attended after IHCC and a short stint at the U of M. The name of that school was, Ramsey County Opportunities and Industrialization Center (RCOIC for short):
To Whom It May Concern: November 21, 1997
Steve enrolled in the Administrative Assistant Program (I did not know the program I signed up for was that though I am sure I was told but it just didn’t register…I had told the instructor that I wanted a program dealing with software. I made the wrong decision, again) at Ramsey County OIC in September of 1996. He is a dedicated student who is well thought of by both students and staff for his upbeat attitude, dedication, and wry sense of humor.
Steve has made excellent progress within his program, completing course requirements well within or before quarter deadlines. In addition to completing course requirements, he applied the software application knowledge to his personal life such as constructing his own database and computerizing personal finances and correspondence. He has a good grasp of application capabilities as well as operating system knowledge. Dependable, hardworking and optimistic are good descriptors of this person.
If you have any questions regarding Steve’s status as a student at RCOIC or character, please feel free to call me at…
That was just a glimpse of the road I had traveled, but I suppose there are many just like me on life’s busy streets. Heads bowed low, shoulders stooped and eyes that stare in defeat. Though, I attended a brain-injury support group a few times and during my last visit I blurted out, “Why are you all so happy?”
Almost in unison they replied, “Because we lived!”
Saying the wrong thing as was my new norm I said, “So what, we can’t do anything!”
Here is a snapshot into my troubled reality and is doctor written:
LONG-TERM PROBLEMS OF HEAD-INJURY
Brain Injuries do not heal like a broken leg or a cut-vein. If a broken bone is reset properly and kept immobile for a certain amount of time, predictable healing will occur. A bleeding wound on the skin will clot, form scar tissue, and heal, often leaving no sign of the wound.
Brain Injuries, on the other hand, are unpredictable. Even with modem diagnostic equipment, doctors have difficulty assessing exactly which components of the brain have been injured and to what extent. There is no way to know how quickly or completely a person can recover from a brain injury. Each case is unique.
Many of the long term problems produced by traumatic brain injury are linked to the functions of the area of the brain that is injured. These are known as localized effects. To understand what can go wrong, it is first necessary to understand something about the geography of the brain.
The brain is made up of three main parts: the cerebrum, the cerebellum, and the brain stem. The cerebrum is the largest section of the brain. It is divided into two halves or hemispheres. The left hemisphere tends to direct activity on the right-side of the body and the right hemisphere controls the left side of the body. Most of the activity performed by the cerebrum takes place on its surface, an area known as the cortex.
The cerebrum has four major regions, or lobes. The frontal lobe controls emotions, personality, voluntary muscle control, and the highest intellectual activities such as problem solving, creative thought, judgment, speech, and reasoning. The activity in the frontal lobe carries the primary responsibility for, inhibiting impulses, providing motivation for action, and maintaining appropriate social behavior. Among other things, frontal-lobe damage can take a toll on a person’s coordination.
The parietal lobe stores information gained from the senses of touch, taste, smell and hearing. It also interprets language and is, therefore, used in reading and mathematics. Injury to the parietal lobes can lead to loss of taste, smell, or hearing. The occipital lobe is the vision-interpreting center. Double vision can be a long term consequence of damage to occipital brain cells.
The cerebellum is smaller and is located at the back of the head. It is responsible for remembering habitual muscular movements (such as shoe tying and catching a ball), and helps in maintaining balance. Destruction of cells in the cerebellum can affect balance and disrupt a person’s ability to perform basic motor skills.
The brain stem is located at the base of the brain. The stem connects the brain to the main power line of the nervous system-the spinal cord. It controls consciousness and arousal and coordinates vital unconscious activities of the body such as heartbeat, blood flow, breathing, swallowing, appetite and thirst. Brain stem damage can affect any of these vital functions.
Disruption of the electrical and chemical balances within the brain may produce seizures, especially in children.
ALTERING WHO YOU ARE
Some localized brain damage alters the basic mental and emotional makeup of the victim. This is especially likely to occur when the frontal lobe is damaged. This area of the brain directs many of the key functions that give a person identity: personality, inhibition, judgment, reasoning, and problem solving. Other brain functions essential to our makeup, such as memory and emotions, may be diffused throughout the brain. Loss of these functions is not as easily identified with injury to a particular area of the brain.
A brain injury can rearrange many of the traits that define who you are. It can change the way you act, how you react to situations, and your ability to think, joke, cry, and love. It may change so many of the basic parts of a person’s individuality that family, friends, and even the individual no longer recognize the person they thought they knew. Even a mild alteration in the activity of the brain can influence how a person responds to life.
About 80 percent of people with brain injuries recover all of their physical functions within a year. Yet many of them continue to encounter cognitive,behavioral,and emotional problems.
The term cognitive is used to describe brain processes associated with learning and knowing. The most common long-term cognitive problems affect memory.Although long-term amnesia is rare, people with brain injuries often have difficulty remembering recent experiences or new information because the brain loses some of its capacity to store or recall new information.
The problem is far more serious than the occasional frustrating or embarrassing memory lapses that we all experience. Because victims may be unable to remember what they have been told or have read just moments before, they may be unable to receive an education, complete job training, keep appointments, remember assignments, meet deadlines, or even keep up with daily routine tasks. At worst, short-term memory loss can trap people in a state of continual confusion. At best, it can erode self-confidence. Disruptions of the nerve network in the brain frequently reduce the brain’s efficiency. As a result, the ability to concentrate may also be affected. People with head injuries may tire easily, have trouble staying focused, and become frustrated. They may leave tasks unfinished, either because they cannot stay focused on the task, or they lack the energy to keep going when the task becomes challenging. Coping with stress is especially difficult.
Brain injury can cause disruption of a variety of cognitive skills. Long-term problems of this nature may include learning disorders and problems with reading, computation, speaking, processing information, and understanding abstract concepts. People with head injuries may process information more slowly, and thus have difficulty following rapid changes of subject or dealing with events that occur suddenly.
One common intellectual challenge for people with brain injuries is performing executive functions -the ability to understand a situation, organize a plan of action to deal with it, and evaluate and adjust the plan as the need arises.
Brain injuries frequently affect an individual’s ability to think ahead and to understand the possible consequences of a planned action. Brain injuries may also limit a person’s ability to learn from success and failure.
The most devastating of the possible long-term effects of brain injury are behavioral changes. People known for a lively sense of humor may find they have lost their timing. On the other hand, previous personality characteristics may become more pronounced. For example, a person who was careful about keeping a clean house before an accident may become obsessed with the idea of cleanliness. Children and adolescents may take a little longer to shed immature habits.
While some behavioral changes can be attributed to increased anxiety and irritability over memory loss and lack of focus, more sweeping personality changes may be caused by frontal lobe damage. Behavioral changes are particularly aggravating because they tend to become more evident just as physical injuries are improving. In one study, families of people who had experienced brain injuries 5 years before reported that behavioral changes caused more stress than any other effect of the injury.
Some behavioral problems, such as impaired judgment, are closely related to cognitive problems. A person with a brain injury may use poor logic or interject statements that have nothing to do with the topic. He or she may become intrigued by ideas that make no sense. Understanding relationships between cause and effect may be difficult. He or she may be unable to show the appropriate degree of response to various situations. In one case, an Arizona man who had experienced a brain injury called police to report a missing cereal bowl! In considering solutions to problems a person with a brain injury may show a glaring lack of insight, overlook important considerations, and reach conclusions that the facts do not support. He or she may have particular difficulty looking ahead to future consequences of actions. This can lead to decisions that endanger safety or run headlong into financial and legal problems. As one neuropsychologist explains, “Because patients with brain injury can act impulsively, intrusively, or just plain bizarrely, some may get in trouble with the law when their behavior is misunderstood.” (I will get into that at a later date.) Frontal lobe damage may also affect the development of social skills.
A person’s brain maintains smooth interaction with other people by sending nerve messages that inhibit actions. The key to getting along well with others is the ability to suppress thoughts, actions, and emotions that society considers inappropriate.
For example, suppose you are in hurry and a crowd of people are blocking your way. A natural response is frustration and anger, which may trigger into knocking down everyone in your way. While this may be the most effective way of speeding up your progress, it is socially inappropriate. The frontal lobes suppress the impulse until you have had time to consider a more appropriate response to the problem. People who experience brain injuries may display impulsive behavior that puts them in dangerous situations and demonstrates a lack of consideration for the feelings of others.
Loss of inhibition is especially heartbreaking when it concerns emotions – another crucial part of a person’s makeup that the brain controls. Injury to the emotion-controlling process of the brain can send people on an endless, wild roller- coaster ride of feelings and outbursts. They may laugh outrageously at things that no one else considers funny, or cry over a trivial matter. Such people may lose their temper easily and swing wildly from one mood to another.
Personality changes can also be caused by damage to parts of the brain that influence the ability to be flexible. This leaves the victim unwilling to compromise with others or to adjust to new situations.
Thus, loss of inhibiting ability can reduce a mature, dependable person into a rigid, obnoxious, immature person with little ability to control his or her own emotions or actions. Family members and friends who would be willing to sacrifice a great deal to care for a person with virtually any other serious health problem find it impossible to tolerate personality changes. They may become angry at rude behavior and embarrassed by inappropriate actions. They may feel loss of affection for this inconsiderate “stranger” who bears so little resemblance to the person they knew and loved. Long-term studies have found that, due to their changed behavior, most people who experience severe traumatic brain injuries lose their former friends within a year.
Adults with personality alterations caused by brain injury are often unable to maintain ties with friends and work associates. They may be less polished or courteous,or crude in their language and actions. Brain injuries can alter the very values on which victims base their behavior. Isolated from others, bewildered by their own actions, and shamed or disgusted by the type of person they have become, such individuals fall easy prey to depression.
Everyone who suffers a serious illness or injury that results in long-term health problems undergoes a period of adjustment. The adjustment can be particularly frightening for the people who experience the lingering effects of brain injury. They must try to regain mastery over their altered lives with a control center that does not work properly. Sometimes the damage is severe enough that the brain cannot provide reliable control.
People who lose the use of both legs and arms have to face new challenges, but at least each is the same person as before. Nothing about them has changed except for the loss of a specific body part or specific function.
People suffering severe brain damage must come to grips with a loss that strikes closer to the very essence of who they are. A part of their former identities may be gone, replaced by something else. The comments of people who have had to cope with such a loss demonstrates their bewilderment.”I missed me!”
“I felt as though a stranger had taken over my body.”
“I can remember looking into the mirror and not recognizing the reflection.”
The loss of identity and loss of control over their lives can have tragic consequences.
In an extreme example, a young Montana woman committed suicide after months of struggling with thought functions and behavior that had been disrupted by a serious brain injury caused by a traffic accident. “Over and over her lack of judgment and capacity for forethought led her into desperate predicaments,” her parents wrote later. “Afterwards she could see what she had
done and her self-hatred increased, but she could never seem to learn from her experience. “
To make matters even more difficult, people with brain injuries often struggle with their new situations in an environment filled with ignorance and even hostility. Because their injuries are often hidden from sight, other people expect them to act as if they were perfectly healthy. Instead of realizing that this behavior is accident-related, others may attribute it to immaturity and weakness of character. Authorities may not give them the help and understanding they need.
No wonder some medical experts refer to people with brain injuries as the “walking wounded.” As one expert put it, people who have been head-injured are hurting, suffering pain beyond human comprehension.”