Real Food & A Terror Filled Night

“Goodnight, Steve,” Terri my pretty blonde nurse said. She wasn’t only my nurse but she spent time with me and knew some of the people I knew. Terri was the sunshine of my life at that time. She always peeked her head into our quad bed recovery room before turning out all lights in the nurses station. The wall facing that station was smooth-face green block up a third of the way, then the other two thirds up to the ceiling, were glass so that the nurses could keep visual tabs on us.

When I was mostly weaned from the IV tubes and was whispering my likes and dislikes to her she discovered my penchant for Italian food.

One late afternoon, Terri told me, “I have a special treat for you at suppertime, but you have to promise not to tell anybody. I could lose my job over it. I know it’s been months since you’ve had real food” (I should have taken the hint.)

“Can you give me a hint?” I struggled getting the words out but she did hear me.

The response everybody gives and Terri’s was no different was, “Huh,” and she leaned into me and listened intently. I loved the attention she gave me. She honestly made me feel good about my crippled self.

“Could I get a hint,” I asked softly not wanting another besides her, to hear.

Terri whispered into my ear, “I’m not supposed to be doing this and the only person who knows other than us is,” and she nodded toward, Elizabeth. “I bought you a Caesar’s Salad from Cossetta’s. http://cossettas.com/eatery-pizzeria/

You’re on a soft-food diet and the reason for that is because you have no gag reflex. Your lungs could fill with liquid. They fear that you may get pneumonia, but I have been keeping up with your charts and all and I think the salad would be ok. Elizabeth knows your vitals and she will be in here with me watching the monitors, while I feed you. Should be fine, what d’ya think?”

“That sounds terrific, Terri and thanks.” It had been about three and a half months since tasting anything other than hospital food or not even tasting it just being nourished from the drip, drip, drip of that tube going from the pouch to my stomach. Really this was the first experience with real food in a long time. Luckily, I hadn’t forgotten how to chew,

No one could see the special privilege I was getting because the curtain around the bed was pulled shut. I was fed the taste sensation after everybody had been given their – drip-drip or re-chewed-looking suppers.

The salad didn’t harm in the least and Dave Cossetta had even prepared the cheeses (Provolone, Fontinella, Mozzarella) especially for me, cut up small and drizzled with their house blend Italian Dressing. It came with authentic, baked on the spot, Italian Bread, which of course I was not able to have.

Each smaller than bite-size forkful was brought to my mouth with care by Terri. Elizabeth stood near the stand at the side of my bed with watchful eye. They had me chew each bite, like, a hundred times. It was a supraglottic swallow, Terri said. I couldn’t even finish the salad even though the taste was marvelous.Terri was so nervous and I hadn’t done this (chewed) for months and this new way of eating made sure I ate slow.

I thanked her much and she kissed me on the cheek.

Continued….. I’m back…

Everybody Had Gone Home

The nurse’s station was still and absolutely quiet. Their lights were shut off except for, low wattage lighting that seemed to create a halo. The nurses had gone home – now was the time to be vigilant.

Two guys in hospital garb slid into the nurse’s area, sat and poked around for awhile, being ever quiet. Of course the doors to our room were closed at this time of the night. They got up and walked towards me. Could they see that I was awake? They opened the doors to our room and slithered in.

My suspicious mind and feelings told me that this had happened many times before. This time I was awake. They would not get me, I decided. I kept my eyes open wide to get a good look at the perpetrators; I will report them to the nurse in the morning. Ha-ha they don’t know they are being watched.

Bear with me while I try to explain the weariness and fear that I felt that night… not being able to sleep was a good thing. Why are they here now? I surmised the time to be about three A.M.

Those two scoundrels tip-toed in. I couldn’t see what they were doing…I heard though. I could hear the curtain surrounding the bed opposite me open and then close quickly.
The next bed’s curtain opened and the the guys mumbled about. I heard them slip inside the curtain. You ask how I know? My hearing seemed stronger in the stillness and because I could not see, I listened more intently.

The slider hooks could be heard as they moved along the bar holding the curtain. They moved closer to my bed. I heard the curtain around my neighbor’s bed being slid open. I heard a grunt and then one with a high-pitched voice spoke a little louder than he intended, I’m sure.

“Lift,” the voice squealed and I heard a rustling of the sheets.

Then a heavy sounding weight of sorts had been put down…”One to go a lower voice said.

These guys were in here for one reason only; they are really sick, twisted, demented and unscrupulous. Taking advantage of us who were so vulnerable and unable to protect ourselves.

I was thinking of how to defend myself as they mysteriously moved to and pulled my curtain open. Anybody who would take advantage of other humans who were unable to defend themselves…Hey wait a minute! Isn’t the fear of being raped and being unable to stop it the fear of all women since Eve? I am now woman-like in strength – probably even less – more child-like. I would not be the least bit surprised if a woman could take me.

How will I get the nurses to believe me in the morning, how will I ever get anyone to believe me?

I began screaming and kicking wildly (could only kick with one weakened leg the right leg would not move. I tried throwing haymakers with my weakened left. Again my right arm would not move either. They lifted me and gently set me down. They must’ve laughed and scoffed at my weakness and ineptitude.

Then I heard one of them say, “It’s okay, the sheet is dry.”

An old adage says: “Never attribute to malice that which can be adequately explained by stupidity.”

'North Memorial - I was airlifted to this hospital from a smaller hospital close to the accident site and my home, in Wisconsin. The two months pent here saw me in a coma.'
'Region's hospital bought out Ramsey Hospital, but I stayed ion the top floor of that rounded tower  That was only my second hospital in four months...soon to be transferred to the first of three nursing homes and would finish out the year at a Brain injury Rehabilitation Center in Milwaukee, WI. July of 1988 - July of 2015 were the worst years of my life.'
'Cossetta's Restaurant where Terri got the salad for me.  Before that, Mama Vitali, came to visit me.  Many Italian and non Italian friends. Most of whom I would never see again.'
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Elizabeth Dill
Elizabeth Dill Can’t imagine what it was for you after your wreck finding it hard to eat and talk. Sounds like you had some wonderful nurses. Waiting for the story to continue.
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Long Term Problems of Traumatic Brain Injury

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.

COGNITIVE 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.

BEHAVIORAL PROBLEMS

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.

INJURED SPIRIT

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.”

continued from, In God’s Time…

Disappointed

Each time I left the states with the idea that it would be the last time so I had bought a gigantic suitcase.  It was so huge that my things could be heard sloshing around inside and so big that it wouldn’t fit in the trunks of some cabs, and so I had to get a van cab.  I felt ridiculous, but hey, I was moving permanently.  Kina, the girl whom I had corresponded with for a couple of years was going to meet me in Manila, at the airport.

1998 - At the Singing Waiters and Waitresses  Restaurant
1998 – At the Singing Waiters and Waitresses Restaurant –

It was about ten at night when we landed.  The plane emptied without too much confusion as I hurried to get my carry-on bag from the overhead compartment, lucky that a taller person got it down for me.  After hurrying as best I could (always rushing because I didn’t want to hold anybody up, ever) and getting to the stairway at the front of the plane the guy behind me offered to carry my bag to the tarmac and I was grateful for the help.  One kind gesture seems always to lead to another. 

The stewardess said, “Would you like a wheelchair?” 

“How far is it to the main terminal,” I asked.  She told me and I thought I could make it on my own because everybody was so nice to me. 

“Your next flight please ask wheelchair assistance,” said the flight attendant as I slowly but surely made my way down to the tarmac where my bag awaited me. 

All the laws of the ADA were a good thing for some but I wanted to distance myself as far as I could from the moniker – Handicapped – and to this day I still get angry with myself for the way I look when I walk. To require businesses to change all of their entrances, exits, bathrooms etc…just seemed ridiculous to me, but of course that was when what had happened to me was recent and soon after being taken totally advantage of by my guardian, (my first wife) I never wanted anybody to make things easy for me because of my handicap, instead, I just bitch a lot. 

Yes handicapped - that's me!
Yes handicapped – that’s me!

 

One time I was asked at a job interview because my sometimes quirky movements, ill-timed responses, and inability to find the correct word, “Do you have C P (cerebral palsy)?”.

Well no, but what difference should that make anyhow?  I knew a guy with CP who owned his own print shop and made a success out of it.  That was in Waterford, WI when I was a resident at New Medico Rehabilitation Center in the outskirts of that town.  If I could just get financed into some sort of business, I am sure that I could run it; but that is an impossibility now so I just write and always try to improve so that one of these days…

And my own sister while playing softball at a family get-together laughed her head off when I hit the ball and tried running to first base, “I’m sorry” she said, “but you look so funny!” 

I laughed with her knowing how ridiculous I looked.  Lesson learned though because I would never try to do normal things again.  I didn’t like being something to laugh at.

A Halloween get together at house in Dresser, WI circa 1993?
A Halloween get together at house in Dresser, WI circa 1993?

When visiting someone I just find a chair and sit in it until time to leave. I don’t look disabled while sitting, in fact; I seem completely normal, I think.

That all happened at their old airport before the new one was built with a new name the, Ninoy Acquino International Airport or NAIA. is known by a number of names, Nino Aquino International Airport (NAIA), Manila Ninoy Aquino Airport, Manila Airport, Manila International Airport and Manila Philippines Airport. They are all the same so don’t let those different monikers confuse you.  I will refer to the airport as the Philippine or Manila Airport.

I walked through an arrival hallway to the check-in for foreigners with passports.  My passport checked out okay, I knew it would.  Then it was onto the baggage claim area and in place of a circular luggage drop down, theirs was an elongated oval.  You most definitely didn’t want to miss your bag or you would have to wait too long until it came back around, most people can simply run up to it if the bag has slipped by them, but not me.

I got that oversized piece of embarrassing luggage and rolled it the rest of the short distance to where people had come to meet their loved ones. 

There stood beautiful, Kina, she was obviously who she portrayed herself to be. She was smiling a disappointed smile.  I had told her all about my disability, I thought, a little in every letter.  I guess meeting me would be a disappointment because my letter writing I was told, is so eloquent; how could I be the same person?  And my hair was mostly cut off.  Continued again…

Kina at Robinson's Apartelles, Mandaluyong, Manila, Philippines - 1998
Kina at Robinson’s Apartelles, Mandaluyong, Manila, Philippines – 1998

Traumatic Brain Injury

Grief and Loss

06 Jan 2012 2 Comments

by philippinewanderer in TBI Tags: demons, head injury, intimate, loss of self, severe, soul shattering, TBI, traumatic brain injury, unconsciousness [Edit]

The control center...
The control center…

A traumatic brain injury is a blow or jolt to the head or a penetrating head injury that disrupts the

English: A CT of the head years after a trauma...
English: A CT of the head years after a traumatic brain injury showing an empty space marked by the arrow were the damage occurred. (Photo credit: Wikipedia)

function of the brain. Not all blows or jolts to the head result in a TBI. The severity of such an injury may range from “mild,” i.e., a brief change in mental status or consciousness to “severe,” i.e., an extended period of unconsciousness or amnesia after the injury. A TBI can result in short or long-term problems with independent function.

The loss of self is often the real tragedy of traumatic brain injury. It is seldom addressed by the medical profession yet it is a loss so profound that many never recover from it. Brain injury strips away a lifetime of learning, of personal identity, and personal power. The loss is a soul shattering experience, intense and intimate. It is so intimate that society as a whole averts its eyes and closes its ears to the pain and despair of such a naked soul. It is a soul bedeviled by infantile demons, the very stuff from which neurosis and psychoses is made.

Grief over the loss of self is something every brain-injured person goes through. However, grieving often is not recognized for what it is because the resulting distractions, anger, fatigue, and other signs can be masked by or confused with the symptoms of post concussive syndrome or post traumatic stress disorder. Also, lack of insight, which may make you unable to correctly evaluate the impact the symptoms are having on your life, is a typical aftereffect of mild traumatic brain injury. Unfortunately, the recognition of grief as a possible cause of post injury behavior has eluded many physicians and mental health workers, as well as MTBI survivors themselves. Many doctors tend to attribute symptoms of grief following an MTBI to the physical consequences of the injury.

Daughter Angie and I
Daughter Angie and I

I chose to interview a 51-year-old man named, Steve, who suffered a TBI 17 years ago as a result of a car crash. At the time of the accident, this

Anna blowing out candles... 1980
Anna blowing out candles… 1980

man was 34 years old, married with 2 daughters, ages 12 and 13, had a home in the country, and was  enrolled in school for blueprint reading to help his father run his business. Everything was great. Loneliness was not an issue.

One evening in August, Steve and a friend were driving rather fast on a dirt road to have dinner with Steve’s family. They were riding in a Dodge Daytona with tops off. Steve had no seat-belt on, but his friend did. Steve lost control of the car and was thrown out, landing on the ground unconscious. From there he was transported to a nearby hospital and then airlifted to North Memorial Medical Center with swelling in the brain and life support started.

His mother had not wanted the life support as she considered his life was over and predicted a poor outcome if he should survive. His oldest daughter would cry and plead over him to wake up, telling him how much she loved him. Almost as if she could will it to happen. His wife encouraged the life support and stated she would never leave. His father blamed him for the accident and dealt with the grief by listening to Steve’s voice on an answering machine.

Steve’s coma lasted about three months, after which he traveled to a few different hospitals for various long-term therapies. During this time his wife, after being named his guardian did leave him and all that they had achieved during his 16 year marriage had been taken. He lost his family, home, and his sense of self. Because of one night that he will never remember, he lost it all, except for his life, and even that wasn’t familiar anymore.

Steve’s biggest struggle was the loss of self. He has stated that if he hadn’t changed so much his family wouldn’t have left. He struggles with attempting to get people to listen to him and respond to him as a normal person. Because he has speech impairment people will talk down to him and sometimes ignore him. But at the same time, people who have known him will criticize him for not having a job without realizing that a lot of his disabilities are invisible. He struggles with fatigue, memory loss, double vision and right-sided weakness. He sometimes has no control of his right arm, especially when he is fatigued. He’s attempted to return to college but had to stop because of visual disturbances. He cannot read a line all the way to the end. Peripheral vision is affected. All these things contribute to the loss of self, depression and loneliness.

He had tremendous difficulty letting go of the past, even after 17 years, and would drive out to his old house many times.

A welcome home after working out of state for a few months - 1986
A welcome home after working out of state for a few months – 1986

He would attempt to physically help people with things like moving, cleaning, etc., which would frustrate his mother, anger his father, and illicit pity from others. He was left without friends, a family that was too busy to give him the time he needed, and no one who really understood what he was going through.

Easter morn. - 2007
Easter morn. – 2007

In attempts to combat his loneliness he has traveled to the Philippines, and did eventually marry a young woman there. They have a child together who, because of poor maternal care, was born prematurely and suffers from autism. His current family is now in the States and Steve has devoted his life to his 3-year old daughter, who is doing well with the attention he has given her. His TBI has allowed him to work with her in some of the same ways he has been helped. He is now too busy to feel lonely. He still mourns the loss of his children, who are now grown with children of their own, but he feels he has a second chance and is grateful for that.

Never forget that life doesn’t follow the plans we make just because we make them. We have to allow for change, prepare for it, and seek positive results from it. We have to understand that tragedy, sadness and unexpected challenge may wreak havoc at any time, and leave us facing hard work to recover a life.

Every year, hundreds of thousands of people are diagnosed with closed head-injuries. Many more go undiagnosed. And the frequency of the injury is rising.

Because closed head brain injury often reveals few, if any, signs of injury, survivors and those around them-family, friends and co-workers may doubt the validity of the injury. This increases the risk that survivors will not receive proper treatment and adds to the devastating life disruption that head trauma delivers. Often the survivor must relearn the easiest tasks and devise new strategies to execute daily responsibilities.

Doubt and misunderstanding complicate the recovery, making it even more difficult for the survivor to accept, address and attack the challenges. When doubts and misunderstandings come from close family and friends, a crushing burden is added to the recovery process.

I definitely see grief, loss of self, and depression as enormous issues for people who have suffered a head injury. After speaking with Steve, and hearing the amount of losses suffered because of his injury: his family, his home, and very personally, his loss of self, it’s obvious that his losses are similar to what the professionals have stated as grief and loss in their journals, as well as those stated in personal stories of people who have suffered a brain injury, and the families that help care for the victims of those suffering from brain injury. Steve, as well as others who have suffered this type of injury experience, denial, grief, depression, and the struggle to regain a sense of self.

Without a doubt, the research supports the interview.

Diane Roberts Stoler, EdD & Barbara Albers Hill Coping with Mild Traumatic Brain Injury 1998

Kara L. Swanson I’ll Carry the Fork 1999

Brain Injury Association of America http://www.biusa.org

Brain Injury Resource Center www.headinjury.com

Oh The Terror

Terror Filled Nights

 

Afraid to go to sleep because I knew that once my eyes closed these two guys would enter our room and rape and sodomize us; there were three others whom I shared the room with.

The four of us never spoke to one another; maybe they were like me just out of a coma and unable to talk?    After the nurse’s station had cleared out and the lights were shut off except for, low-wattage lights that seemed to create a halo beyond the large glass windows; the two unknowns would sneak in.

These guys were in here for one reason only; they are really sick, twisted, demented and unscrupulous.  Taking advantage of us who were so vulnerable and unable to protect ourselves.

I wondered if maybe I were their only target?  Never did I hear any noise from the others, no kicking or flailing about; was it only I?  I will stay awake this time and find out.  Oh – shhhh, here they quietly come… Gingerly the door is opened and the two are whispering to each other.

I watched as they kept whispering and first went to the bed across from me; that guy is going to get it tonight, but wait a minute, they only rolled him halfway, onto his side and that’s it, on to the next bed on that side of the room.  Now they pick?  These guys are more despicable than I previously thought.

Anybody who would take advantage of another human who couldn’t defend themselves hey wait a minute; isn’t the fear of being raped and being unable to stop it the fear of all women since Eve?  I am now woman-like and I would not be the least bit surprised if a woman could take me.

I was thinking of how to defend myself as they mysteriously moved to the other bed – the one right next to mine! They did the same to this guy as they did with the first one, they rolled him onto his side oooh here they come to my bed.  How will I get the nurses to believe me in the morning, how will I get anyone to believe me ever?

I began screaming and kicking wildly and then heard one of them say, “It’s okay, the sheet is dry.”

A person goes through some madcap hallucinations when coming out of a coma.

 

 

 

 

 

 

 

 

 

 

 

 

Social Security Disability Insurance (SSDI)

I Worked Hard for the Money

about-those-11-million-americans-getting-federal-disability-benefits

I am a disabled American and have been since 1988.  My disability is a traumatic brain injury (TBI, for short) and this injury is called the invisible disability for good reason. 

I lost all use of my partially paralyzed right side, but I still must lug these appendages with me.  People note that I have arms and legs but what they don’t know is they cannot be used in a productive way (invisible).

My thinking is slowed so my response to questions takes, seemingly, forever (sometimes I notice the impatient look on the person to whom I’m speaking

MRI of patient with brain trauma and resultant...
MRI of patient with brain trauma and resultant brain herniation. ” (Photo credit: Wikipedia)

and so blurt something out just to remove the awkwardness of the moment).  I suffer from aphasia (inability to find correct word) and dysarthria (slurring of speech) invisible which oft-times leads people to think I am drunk. 

I once took a beating by the cops because they assumed I was drunk.   They were astonished when results of breathalyzer came back negative. That, even though I told them I did not drink and that I was disabled.

Goodwill Industries
Goodwill Industries (Photo credit: Wikipedia)

I recently applied for a job at the local Goodwill store. But when I handed my application in, I spoke to the manager.  I told her that I would work any area that I was able, that I would work for minimum wage and that I would work in three of the Metro’s suburbs.

Nothing.  Before condemning SSDI income (it is not welfare.  It is a cushion for those who worked and paid into the SS system and were taxpayers.) 

I could tell you more…but I don’t want to bore you.  I loathe being lumped in with welfare recipients.  I don’t get food stamps, healthcare or… I did get subsidized housing.  I am raising my now nine-year old daughter and have done so since birth. 

Obama didn’t give a “Cost of Living” increase his initial three years in office.  His reelection year one was given but that was more like a bribe to get your vote.

Traumatic Brain Injury

06 Jan 2012 2 Comments

by philippinewanderer in TBI Tags: demons, head injury, intimate, loss of self, severe, soul shattering, TBI, traumatic brain injury, unconsciousness [Edit]

Grief and Loss

A traumatic brain injury is a blow or jolt to the head or a penetrating head injury that disrupts the function of the brain. Not all blows or jolts to the head result in a TBI. The severity of such an injury may range from “mild,” i.e., a brief change in mental status or consciousness to “severe,” i.e., an extended period of unconsciousness or amnesia after the injury. A TBI can result in short or long-term problems with independent function.

The loss of self is often the real tragedy of traumatic brain injury. It is seldom addressed by the medical profession yet it is a loss so profound that many never recover from it. Brain injury strips away a lifetime of learning, of personal identity, and personal power. The loss is a soul shattering experience, intense and intimate. It is so intimate that society as a whole averts its eyes and closes its ears to the pain and despair of such a naked soul. It is a soul bedeviled by infantile demons, the very stuff from which neurosis and psychoses is made.

Grief over the loss of self is something every brain-injured person goes through. However, grieving often is not recognized for what it is because the resulting distractions, anger, fatigue, and other signs can be masked by or confused with the symptoms of post concussive syndrome or post traumatic stress disorder. Also, lack of insight, which may make you unable to correctly evaluate the impact the symptoms are having on your life, is a typical aftereffect of mild traumatic brain injury. Unfortunately, the recognition of grief as a possible cause of post injury behavior has eluded many physicians and mental health workers, as well as MTBI survivors themselves. Many doctors tend to attribute symptoms of grief following an MTBI to the physical consequences of the injury.

I chose to interview a 51-year-old man named, Steve, who suffered a TBI 17 years ago as a result of a car crash. At the time of the accident, this man was 34 years old, married with 2 daughters, ages 12 and 13, had a home in the country, and was about was enrolled in school for blueprint reading to help his father run his business. Everything was great. Loneliness was not an issue.

One evening in August, Steve and a friend were driving rather fast on a dirt road to have dinner with Steve’s family. They were riding in a Dodge Daytona with tops off. Steve had no seat-belt on, but his friend did. Steve lost control of the car and was thrown out, landing on the ground unconscious. From there he was transported to a nearby hospital and then airlifted to North Memorial Medical Center with swelling in the brain and life support started.

His mother had not wanted the life support as she considered his life was over and predicted a poor outcome if he should survive. His oldest daughter would cry and plead over him to wake up, telling him how much she loved him. Almost as if she could will it to happen. His wife encouraged the life support and stated she would never leave. His father blamed him for the accident and dealt with the grief by listening to Steve’s voice on an answering machine.

Steve’s coma lasted approximately three months, after which he traveled to a few different hospitals for various long-term therapies. During this time his wife, after being named his guardian did leave him and all that they had achieved during his 16 year marriage had been taken. He lost his family, home, and his sense of self. Because of one night that he will never remember, he lost it all, except for his life, and even that wasn’t familiar anymore.

Steve’s biggest struggle was the loss of self. He has stated that if he hadn’t changed so much his family wouldn’t have left. He struggles with attempting to get people to listen to him and respond to him as a normal person. Because he has speech impairment people will talk down to him and sometimes ignore him. But at the same time, people who have known him will criticize him for not having a job without realizing that a lot of his disabilities are invisible. He struggles with fatigue, memory loss, double vision and right sided weakness. He sometimes has no control of his right arm, especially when he is fatigued. He’s attempted to return to college but had to stop because of visual disturbances. He cannot read a line all the way to the end. Peripheral vision is affected. All these things contribute to the loss of self, depression and loneliness.

He had tremendous difficulty letting go of the past, even after 17 years, and would drive out to his old house many times. He would attempt to physically help people with things like moving, cleaning, etc., which would frustrate his mother, anger his father, and elicit pity from others. He was left without friends, a family that was too busy to give him the time he needed, and no one who really understood what he was going through.

In attempts to combat his loneliness he has traveled to the Philippines, and did eventually marry a young woman there. They have a child together who, because of poor maternal care, was born prematurely and suffers from autism. His current family is now in the States and Steve has devoted his life to his 3-year old daughter, who is doing quite well with the attention he has given her. His TBI has allowed him to work with her in some of the same ways he has been helped. He is now too busy to feel lonely. He still mourns the loss of his children, who are now grown with children of their own, but he feels he has a second chance and is grateful for that.

Never forget that life doesn’t follow the plans we make just because we make them. We have to allow for change, prepare for it, and seek positive results from it. We have to understand that tragedy, sadness and unexpected challenge may wreak havoc at any time, and leave us facing hard work to recover a life.

Every year, hundreds of thousands of people are diagnosed with closed head-injuries. Many more go undiagnosed. And the frequency of the injury is rising.

Because closed head brain injury often reveals few, if any, signs of injury, survivors and those around them-family, friends and co-workers may doubt the validity of the injury. This increases the risk that survivors will not receive proper treatment and adds to the devastating life disruption that head trauma delivers. Often the survivor must relearn the easiest tasks and devise new strategies to execute daily responsibilities.

Doubt and misunderstanding complicate the recovery, making it even more difficult for the survivor to accept, address and attack the challenges. When doubts and misunderstandings come from close family and friends, a crushing burden is added to the recovery process.

I definitely see grief, loss of self, and depression as enormous issues for people who have suffered a head injury. After speaking with Steve, and hearing the amount of losses suffered because of his injury: his family, his home, and very personally, his loss of self, it’s obvious that his losses are similar to what the professionals have stated as grief and loss in their journals, as well as those stated in personal stories of individuals who have suffered a brain injury, and the families that help care for the victims of those suffering from brain injury. Steve, as well as others who have suffered this type of injury experience, denial, grief, depression, and the struggle to regain a sense of self.

Without a doubt, the research supports the interview.

Diane Roberts Stoler, EdD & Barbara Albers Hill Coping with Mild Traumatic Brain Injury 1998

Kara L. Swanson I’ll Carry the Fork 1999

Brain Injury Association of America http://www.biusa.org

Brain Injury Resource Center www.headinjury.com

I prayed to God, our friend again and always…

 

Back to My Parents’

 

The only picture that I own, of the car.   It was discovered in a New Richmond newspaper, maybe Aug. 1st as the accident occurred on the 31st of July, 1988.
The only picture that I own, of the car. It was discovered in a New Richmond newspaper, maybe Aug. 1st as the accident occurred on the 31st of July, 1988.

I made a phone call to my parents’ and told them what the situation was; at that time (early 1989) I was still thought of with dignity and respect, so no questions asked and with no hesitation Mom said, “Yes of course,” Dad who was on the extension said, “That’s great Steve; I’ll have Dave” (a brother) “pick you up.  When can you leave?”

 

Thank God, oh that’s right I disowned him that day at the nursing home.  Being back at my childhood home brought back many memories.  Remembering brought me to when Nancy and I first met.

 

That day will never be forgotten, though the date is…  It all happened in August of 1968.  I was fifteen years old and had just hitchhiked from my driver’s training class in the Midway area of St. Paul.  The day was perfect, the sky was cloudless and a soft, pastel blue with just a hint of a breeze in the air. 

 

 

Midnight Confessions
Midnight Confessions (Photo credit: Wikipedia)

I went to my girlfriend’s house and heard the Grass Roots blaring, “It’s a Beautiful

Picture of a Led Zeppelin exhibition at Montre...
Picture of a Led Zeppelin exhibition at Montreaux taken on March 7, 1970 by Fabio Rizzato (Photo credit: Wikipedia)

Morning,” and it sure was as the laughter of friends carried through the screens on a breeze.  The Grass Roots on the radio was soon replaced with a Led Zeppelin Album… a new band that I’d never heard before.  

 

My girlfriend, Laura, introduced me to her best friend, PeaWee (Nancy).  The two of us really hit it off and before leaving in early afternoon PeaWee and I were boyfriend and girlfriend.  We all left Laura’s place because her parents’ were due home soon and we began walking the railroad tracks east to the trestle (a place reserved for the “cool” kids actually, the troubled kids).  A place for parties, drinking, smoking tobacco and the…  Then showing off, a train or two would be hopped.  Ahh, those were the days.

 

But now, here I am thirty-four years old with two daughter’s nine and ten and living back with my parents, my earning days had vanished and so too Nancy. 

 

One morning I woke and wondered what I could do because I was bored out of my mind.   Before my feet touched the ground, I knew.  Excitedly I went down the stairs (two flights) to the basement where the shower was.  Mom of course was in the kitchen, as she was continually cooking, cleaning or reading if she had the time. 

 

“Good morning,” she said as I ambled through the kitchen on my way to the basement.  She looked on with a fear of where I was headed because just the previous day I had an accident.  While trying to get my underwear on after the shower, I fell, and like that T.V. commercial I couldn’t get up!  I screamed for Dad with my soft voice and luckily he heard me, came running down the stairs and stood me up and sat me down on the toilet seat.  I told him that I fell over trying to put the underwear on, “I should’ve sat on here instead of doing it while standing, I’ll know next time.”  Not another word was mentioned about the incident from either of them. 

 

This would be a banner day for me – I could tell!  I never fell while showering and Mom made me a fantastic breakfast (I loved her cooking) but then I told her what I was going to try to do. 

 

“Do you think you can, Steve?” 

 

I’ve got to learn to care for myself Mom, I’ll be alright.” 

 

So cane in hand, I ventured out on my own.  I was going to take a bus to the mall a few miles away.  It probably took me twenty minutes to walk the block to the bus stop and I had gone for daily walks around the square block for weeks; I thought I could do this.

 

The bus driver was patient as he waited for me to scale the three high steps and plop down into the seat directly behind him.  Always conscious of slowing others, I apologized and we began rolling away from the stop.

 

At the mall I tried purchasing a pair of jeans with my credit card but was told I had to go downstairs to customer service.  I ambled down to find out what the problem was  and this is what I was told when my number had finally been called.  I handed the clerk my card and said, “This card wouldn’t work and can you tell me why?”

 

She looked at her computer briefly and snapped, “This card isn’t in your name.” 

 

Instinctively I knew, but I asked anyway, “Whose name is it in?”

 

‘Nancy?”  Well of course.  I wondered what else she had done to my credit and with my once, honorable name?   “Did you want to apply for another one,” she asked?

 

How could I?  My possessions were all gone and being unable to work what chance did I have?  “No, thanks.”  Why did I say thanks?  I phoned my poor mother and asked if she would pick me up, of course she obliged.  I couldn’t take the bus home because I didn’t have any strength left and because I couldn’t think clearly on which bus to take; I was a mess.