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Traumatic Brain Injury: Survivors, their struggles and their Reemergence Into Society By Austin J Fisher August 24, 2012 Applied Communications: Senior Colloquium SPCO 482-01 Instructor: Glen Frappier

 Introduction

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Traumatic Brain Injury (TBI) is still a very unknown subject in the United States and the rest of the world. There is plenty of information available but the American population is not aware of how many people are affected by the injury or the after-effects and survivors struggles living with it. Counting the number of TBI survivors and the effects it has on them, but most people are completely unaware of what a TBI injury is, the effects it can and will have upon the survivor, as well as the grown community around the survivor. This study will show in depth research, personal experiences and interviews of TBI survivors. This will be research enlightening the public and new TBI survivors communities what to expect. Survivor; this is the chosen word due to the misleading and negative connotations associated with victim. Most TBI injured people refer to themselves as victims; this negative connotation associated with victim often pushes all ideas of hope out of perspective. The attempt at eliminating this word gives the survivor a better chance and more of a chance at recovery according to each individual I interviewed. How does society accommodates TBI survivors for their specific problems and how do TBI survivors go about receiving and letting people know about their problems/disabilities are other areas I will research. TBI is an invisible problem and I want to give people insight on struggles that TBI survivors must deal. In this I will also be looking at the many different sorts of disabilities/difficulties that are produced from TBI; taking in new information, concentration and even holding a simple conversation. By performing this research, societies ignorant mask will be removed and will become aware of the repercussions of such an injury. People are still so uninformed about the severity and the commonality of TBI injuries; here are some of the facts about TBI: Of the 1.7 million who sustain a TBI each year in the

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United States: 52,000 die; 275,000 are hospitalized; and 1.365 million are treated and released from an emergency department. So that ends up being around 200 people per 100,000 that must endure the pains of a TBI. According to the Centers for Disease Control and Prevention (CDC), TBI survivors are only on the rise, making the public more aware of this injury is very beneficial to all. This idea of ignorance is not beneficial; the most common ways they occur are falls (35.2%); Motor vehicle-traffic crashes (17.3%); Struck by/against events (16.5%); Assaults (10%); and Unknown/Other (21%), (Brain Line). Not only that but you may receive TBI from something as simple as sports, i.e. football, hockey, all other physical sports. This unknown injury needs to be publicized more so that there will be less ignorance, even in America; this research will enlighten the ignorant. There has been research done on the occurrences for different professions, sexes, races and age: Males are about 1.5 times as likely as females to sustain a TBI. The two age groups at highest risk for TBI are 0 to 4 year olds and 15 to 19 year olds. Certain military duties (e.g., paratrooper) increase the risk of sustaining a TBI. African Americans have the highest death rate from TBI. According to one study, about 40% of those hospitalized with a TBI had at least one unmet need for services one year after their injury. Brain Line In order to proceed in recovery disabilities need to be assessed; the brain is a very pivotal part of the human and different accidents induce different problems. Improving memory, problem solving, managing stress, emotional upsets, controlling one's temper, and improving one's job skills are the most common. This injury effects tasks once performed daily that seemed so trivial.

Fisher 4 These are all problems that can be handled as long is the survivor is financially sound.

Direct medical costs and indirect costs such as lost productivity of TBI totaled an estimated $60 billion in the United States in 2000, (Brain Line). This is a personal finance concern for the people affected by this injury, my finances were covered predominantly by insurance but many Americans are not as lucky. This project will look into the different ways that recovery survivors are dealing with problems like the ones stated above and how they move back into society; how they must overcome so much more than the average person realizes. Interviews will be done with the survivors and to their family members who were affected by the individual sustaining the injury. These interviews are crucial because this injury doesnt just affect the single person; it affects the entire community they interact with. When you receive a Traumatic Brain Injury (TBI) you feel alone due to not having anyone you can relate to or have anyone who will understand what your difficulties are in your recovery. The doctors can give insight as to struggles you will have over the coming months and years but they do not personally understand because most of them have not endured a TBI. This will be the personal account of multiple survivors, including my own story, with surviving one of the most common occurrences in life, Traumatic Brain injury. The public is not aware of just how often this injury takes place and I hope to enlighten the public of the repercussions and the struggles people have do deal with. Physical disabilities are becoming far more common in the world due to the medical advancements abstaining people from possible death; one of the most common now is Traumatic Brain Injury. You wouldnt notice a TBI survivor looking any different from a normal person; it is described as an invisible injury. Having this injury beneath the skin, it is comparable to a

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disease, which no one would know about unless interacting with a person with such a disorder. There are many different symptoms to TBI and they differentiate drastically between the various individuals who sustain the injury. The brain is such an essential part of the human being and each injury affects the person in a different way. Sporting injuries are also on the rise but have seen a dramatic increase in protection for athletes, and traumatic Brain Injury has become the most common injuries due to the physical risks associated with the various sports. This has led to an increase in many support groups that have been created around the country due to the public not being able to understand or relate to the injured persons difficulties in everyday life. You can go from having a superb photographic memory to not being able to remember what you had for breakfast by lunch, you can go from professional medal winning athlete to barely being able to compete at the global scale you once were able to. Youre probably asking yourself why a typical and average student would choose this topic; so let me explain. November 24th, 2008 I was in a horrific car accident that changed my life and the lifes of others around me; I received a traumatic brain injury, which resulted in the removal of the prefrontal lobe of my skull, a broken neck and a broken rib. I knew nothing about such an injury and had not heard anything in the modern day media either. After the accident I became much more observant of others who sustain head and how they have come to deal with these newfound difficulties in day-to-day life.

The Scope During this turn of the century the exponential growth of technology has resulted in groups of TBI survivors emerging, note survivor has become the chosen word in the community due to then negative connotations attached to the word victim, that meet over the internet in

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various support groups and online communities. There are various websites and even vocal communities where they may find other survivors who they can relate to on the sole basis of being another survivor. This paper will show the ways different survivors deal with different difficulties after enduring a TBI, how they deal with life in general, their expectations and then doctors expectations. Traumatic brain injury (TBI) is a major public health problem, especially among male adolescents and young adults ages 15 to 24, and among elderly people of both sexes 75 years and older. Children aged 5 and younger are also at high risk for TBI. The public does not understand the disorders as well as they think; this resulted in the creation of various support groups around the world to help relate to one another. These support groups can be found all over the nation, most are online databases due to traveling restrictions or difficulties. A simple abrasion to the head may cause TBI. Rock climbers are at risk as much as anyone else, an example that I observed while writing this would be lead climbing. At Wild Walls, in Spokane, WA, there was an incident when a girl was belaying (holding the ropes below for another climber) when suddenly the male climber fell off and raised her off her feet; this resulted in her being kicked in the head. This simple headache would lead to be a concussion, which could also be deemed as a possible TBI. She was dazed and attempting to relieve herself from the pain in her head but with no such luck she was eventually taken to the local hospital for further examination. This is one set of actions that has become very underused; people do not realize the effect a simple bump on the head can have upon you. Brain injury cases are complicated for several reasons. First, the person who is suffering from a brain injury often has little insight to the full impact the injury is having on his or her life.

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This is because the organ that is injured, the brain, is the very organ we rely upon to assess ourselves and how we are doing generally. One of the reasons people are so unaware of the affects of the injury is due to the number of symptoms that can come about after sustaining it. The brain is the most complicated part of a human being; so depending on where you are hit the affects can be completely different. Luckily due to past incidences we have been able to take note of the affects on certain areas which can be read as observed by Robert P. Lehr Jr., Ph.D., Professor Emeritus, Department of Anatomy, School of Medicine, Southern Illinois University: CEREBRAL CORTEX Frontal Lobes: Most anterior, right under the forehead. 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

Fisher 8 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 Inability to express language (Broca's Aphasia)

Parietal Lobes: near the back and top of the head. Functions

Location for visual attention Location for touch perception Goal directed voluntary movements Manipulation of objects Integration of different senses that allows for understanding a single concept

Observed Problems

Inability to attend to more than one object at a time Inability to name an object (Anomia) Inability to locate the words for writing (Agraphia) Problems with reading (Alexia) Difficulty with drawing objects Difficulty in distinguishing left from right Difficulty with doing mathematics (Dyscalculia) Lack of awareness of certain body parts and/or surrounding space (Apraxia) that leads to difficulties in self-care. Inability to focus visual attention

Fisher 9 Difficulties with eye and hand coordination

Occipital Lobes: Most posterior, at the back of the head. Functions

Vision

Observed Problems

Defects in vision (Visual Field Cuts) Difficulty with locating objects in environment Difficulty with identifying colors (Color Agnosia) Production of hallucinations Visual illusions - inaccurately seeing objects Word blindness - inability to recognize words Difficulty in recognizing drawn objects Inability to recognize the movement of an object (Movement Agnosia) Difficulties with reading and writing

Temporal Lobes: Side of head above ears. Functions

Hearing ability Memory acquisition Some visual perceptions Categorization of objects

Observed Problems

Difficulty in recognizing faces (Prosopagnosia) Difficulty in understanding spoken words (Wernicke's Aphasia) Disturbance with selective attention to what we see and hear

Fisher 10 Difficulty with identification of, and verbalization about objects Short-term memory loss. Interference with long-term memory Increased or decreased interest in sexual behavior

Inability to categorize objects (Categorization) Right lobe damage can cause persistent talking Increased aggressive behavior

BRAIN STEM: Deep in Brain, leads to spinal cord. Functions

Breathing Heart Rate Swallowing Reflexes to seeing and hearing (Startle Response) Controls sweating, blood pressure, digestion, temperature (Autonomic Nervous System) Affects level of alertness Ability to sleep Sense of balance (Vestibular Function)

Observed Problems

Decreased vital capacity in breathing, important for speech Swallowing food and water (Dysphasia) Difficulty with organization/perception of the environment Problems with balance and movement Dizziness and nausea (Vertigo) Sleeping difficulties (Insomnia, sleep apnea)

CEREBELLUM: Located at the base of the skull. Functions

Coordination of voluntary movement Balance and equilibrium

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Observed Problems

Loss of ability to coordinate fine movements Loss of ability to walk Inability to reach out and grab objects Tremors. Dizziness (Vertigo) Slurred Speech (Scanning Speech) Inability to make rapid movements Obtaining a general understanding of the brain and its functions is important in being

aware of the rehabilitation process. It is also very important, however, to understand that the rehabilitation professional is concerned with the whole person. The identification of individual problems gives the rehabilitation team areas in which to focus treatment plans. All of these plans are designed to work toward the rehabilitation of the whole person. Each problem area affects other areas and many times resolving one problem has a major impact on other problems. For example, reestablishing postural balance and eliminating dizziness greatly enhances concentration and attention, which allows for improved cognition and problem solving.

(Hazelton)

Fisher 12 Why do you look inside a carton of eggs before you buy it? Because even though the

outside of the carton may seem perfectly normal and intact, one of the eggs inside may be cracked. The same holds true for TBI. Your Veteran's head may show no signs of being injured, but the inside (his or her brain) may in fact be damaged (Familyofavet). This invisible injury makes it difficult to communicate with people who dont believe you are injured at all; in many cases there are no visible signs of injury. One group that produces many TBI survivors is the armed forces with soldiers are also affected by TBI; most of them just dont know it. The interviewee, Kevin Phillips, received a TBI when he parachuted off of a plane for a training course while still on duty. The only noticeable signs of the TBI were minute personality changes, which sparked an investigation and led to his dismissal from the armed forces due to injuries while in line of duty. Traumatic brain injury is a leading cause of death and lifelong disability among children and young adults in the United States. The Centers for Disease Control and Prevention (CDC) has estimated that each year, approximately 1.5 million Americans survive a traumatic brain injury, among whom approximately 230,000 are hospitalized.2 Approximately 50,000 Americans die each year following traumatic brain injury, representing one third of all injury-related deaths.3 Adolescents, young adults, and the elderly are at highest risk of these injuries; the most common causes are attributed to motor vehicle crashes, falls, and violence (CDC report to Congress). TBI recovery is one thing you cannot prepare for, you do not know when it will happen and no matter what you cannot predict the effects it will have on your life; each person is effected in a different manner due to the area of the brain that is effected. Through this paper we will look at different ways each survivor was affected in their specific situation and how they

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were able to communicate it to the public; not only will we look at survivors but we will examine the communities around them and the ways that each community dealt with the changes in the person.

The History The history of the awareness of Traumatic Brain Injury is important to see where this research and data stems from, what has been done and exposed already. It was referred to as a concussion or mild head injury and was near fatal with every incident until improved antiseptic techniques in the later 19th century and more effective neurosurgical techniques, the mortality of a head wound with Dural penetration was 35% during World War I (19171918). Chris Nowinski, professional entertainment wrestler and college football player, wrote a book about the ill effects of all the concussions he suffered throughout his career. His novel, Head Games: Football's Concussion Crisis examined the long-term effects of head trauma among athletes. He was able to bring the subject of head injuries into more of a public focus. Further research has led to the notion that professional football players were 19 times more likely than other men to suffer from Alzheimers and other memory problems. Internet networking has increased the number recoveries by giving the option of relating with other TBI survivors in similar times. It allows for an indirect community to form, which allows the survivors means of relating to one another and sharing their experiences with other TBI survivors (Personality injury blog). Development of technology has increased awareness and diagnosis, which allows for more recoveries to occur. Not only has it been valuable for the injured parties but also it has allowed for the communities around the injured party to find other people that will understand the difficulties the community will have. This increase in

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communication over the Internet allows for you to network with other survivors which is seen in the TBI Network in the Northwest. It introduces you to different ways you can communicate your hidden injury to the public. Kevin Pearce, professional snowboarder; publicized his injury and displayed the easy occurrence of it. In one of his training runs for the winter Olympics in 2010 he sustained a TBI on the half pipe. His celebrity status brought more attention to the injury; this was highly publicized by all of his sponsors and any sort of media groups he was associated with. His injury helped make athletes, such as himself, more aware what they were at risk of and how they should protect themselves from such injuries; this has been further pressed into media by Kevins campaigning for children to wear helmets. (ESPN) More recently, Junior Seau, died in the past year of gunshot wounds to the chest; the wounds, self-afflicted, were produced due to years of sustaining head injuries, he committed this act in order for his brain to be examined by scientists. Once athletes become aware of the effects of their sports on their brains they seek more information for the public, as can be seen with their actions. Many of the contact rules are being more strictly enforced since these events and concussions are being looked at further due to the chance that the patient may be misdiagnosed and therefore not treated properly. (LATimes)

Societies expectations/Misunderstanding Survivors The society we live in is rigid with acceptance and continues to hold an ignorant view regarding the everyday struggles TBI survivor must overcome in order to seem normal amongst popular cultures ways. The starting point is the instant thought that when you receive a TBI you are inept at continuing your activities no matter what the circumstances are; by

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signifying the TBI survivors as victims it puts a negative and enabling aura around us. TBI is also not a very publicized injury for how common it is, 1.7 million who sustain a TBI each year in the United States. Referring back to the reason for this as my subject, it is to raise awareness for this misunderstood injury. The only reason it is being brought into spotlight is with the occurrence to international and national icons in the United States and the rest of the world. If we are able to catch this epidemic in early stages TBI patients receiving early intervention services were shown to be discharged at higher levels of cognitive functioning. The benefits are great to raising awareness on this subject and not just saying Ill be better tomorrow.

Realistic/Doctoral expectations communicated to survivor Doctors have the knowledge of the effects upon their patients due to the amount of study on the subject. They have a much more realistic view and hold reasonable expectations. They dont allow their patients to have to outlandish goals, which are disheartening, but allow the patients to learn as the recovery ensues. This body of work is a vital tool for those who devise the strategies for prevention and treatment. However, a critical dimension will be lost if one sees it only as data, if one does not try to put even a fleeting face behind the numbers. They represent people who if they survived have had their lives significantly affected. Through research, we are finding better ways to prevent injury and improve acute care. We who are injured may experience improvement both in function and the quality of our lives when we have access to rehabilitation and support to develop and utilize our remaining strengths and abilities. With so many lives affected, we seek and have the potential for independence, to have the chance to move beyond our disabilities and

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give back to society. As a survivor, as a disabled physician, I applaud this publication as a step toward making that possible. CLAUDIA L. OSBORN, DO, FACOI COLLEGE OF OSTEOPATHIC MEDICINE, MICHIGAN STATE UNIVERSITY

Financing Difficulties From my first hand experience with my injury, I didnt understand money like I do after having to look over the finances of my injury. Insurance was the best thing I had to help my family and I cover the bills. Direct medical costs and indirect costs such as lost productivity of TBI totaled an estimated $60 billion in the United States in 2000, (Brain Line). So you should be able to see the way this injury also has an affect on others who are not directly related to the accidents that happen. In the year 2012 I have spoken with families who have to sell off pieces of property, cars and miscellaneous things they own in order to cover their financing difficulties. People do not concern themselves with having to be ready to tackle such a financial endeavor because they still believe it is a rare occurrence; if they knew of how common this injury was becoming though, they might change their minds.

Invisible Injury Often the injury, TBI, is referred to as the invisible injury, due to no physical symptoms are apparent to the naked eye. Many of the difficulties for the survivors is learning to become open about their changed abilities and ways they can be accommodated; upon interviewing many of them, in side conversation, they stated that being open and accepting the new person you are is an important part of your recovery. Many of them said that the first step is for you to accept your new abilities and only then are you ready to move back into the world you were once such a

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part of. Dr. Antoinette R. Appel has stated: Left to fend for themselves, the victims of traumatic brain injury, already confused by their inability to be the people they were prior to the injury, now face the daunting task of demonstrating that an injury they do not understand and cannot comprehend is producing the confusion they cannot communicate. (Lawyer Group). So in order to transition back into society, one must first accept themselves, only then can you begin to take part in your normal activities again.

Networking/Support Groups TBI survivors rely on other TBI survivors to translate the difficulties that will be had. Doctors can give possibilities but having no first hand experience with the injury, they cannot relate more than with statistics, first hand experience is a necessity in order to create a relationship that survivors can trust in. With the surge of blogging there have been many that have been initiated by TBI survivors in an attempt to supply the general public with knowledge of each individuals difficulties. By proceeding with this they are able to form support chains for themselves and again, get rid of so much of the ignorance society has on the subject. Recently finishing my internship with TBI Survivors Network, our goal was to help develop an understanding community for our fellow survivors. Armed forces are another group that is always at risk of TBI due to being in combat and in a dangerous proximity. There has been discussion of developing a support group on the front lines for the soldiers. European groups and African groups have been in discussion as well. These groups where you can actually relate to people and have them understand you are so important for the hope that can coincide along with it.

Fisher 18 There has been creation of online networking sites that are comparable to social media

websites such as Facebook to initiate a common theme to connect survivors and their families. Being able to reach out and relate to people is one of the main goals of TBI survivor groups; the fear of being alone and no one understanding them is a common fear. It is common for the doctors to say they understand what you are going through but in a way, it makes no sense. Most doctors have not sustained a traumatic brain injury, maybe a concussion, but nothing with the effects of a true traumatic brain injury. Not being able to find someone you can actually relate to and understand your troubles is just one of the factors that may elicit suicidal thoughts. Amidst the interviews there were a number of survivors who can relate to having those thoughts that life just wasnt worth living if I cant be the person I was. At one point in my recovery, I was placed on 24-hour watch to keep myself from attempting anything like this. These are unexplainable actions and thoughts that were brought about by the TBI. Headstrong, a support group initiated by people affected by TBI, survivors and their families, is another group attempting to educate the public and enlighten survivors of how to live with a TBI. We help young people living with TBI access support for the best recovery possible, secure a meaningful place in their communities, and live with dignity and respect. They help by creating a community for the TBI survivors amidst their time of recovery and stress after their injury.

Interviews/Data The best way to begin to understand the way people are affected by this injury is through personal impact on the persons life. After beginning my internship with the TBI Network I was given many opportunities to observe their struggles and interpret the ways that they dealt with

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these disruptions to their lives. I then proceeded to interview survivors in the group with how TBI has affected their life. I have remained in close contact with the doctors I had after my injury so I was able to interview them as well and receive information on various things they have observed through their years of work. Interviews seem to be the only option for being able to understand difficulties and the over all diagnosis of TBI; I proceeded to interview a number of survivors, family members and doctors/therapists to gain further understanding of the repercussions of the injury. The interviews allowed me to make inferences about the survivors difficulties and how they confronted those.

Injured parties questions NOTE: Participants were not forced to answer questions and some of the questions needed to be reworded due to the participant not understanding. There will be many questions with no answers because of this. The following interview will be with Traumatic Brain Injury Survivors: Craig Sicillia Founder/Coordinator at Brain Injury Radio Network Logan Olson founder of Logan Magazine. Kevin Phillips TBI survivor and Military veteran. Paul and Nichole Davis TBI survivors Librarian and marine construction. Freeman Thompson TBI Survivor, engineer micropile foundations, tutor. Survivors Questions 1. How did you communicate your invisible injuries? 2. Did you look into any political actions? Social actions? 3. What difficulties did you have after your accident?

 4. How did you attempt to move back into your normal lifestyle? 5. How did others expectation affect your recovery? 6. Did you face discrimination after your incident? 7. Did you see any changes in who you were? 8. How did you go about receiving accommodations? 9. What were your accommodations? 10. What difficulties have you had? 11. Did you expect to be so different? 12. Did negative attitudes have an effect on you? 13. How did your disability affect you? 14. How were your difficulties interpreted? 15. How did the doctors affect your recovery? 16. Did your view of life change? 17. Was one of your initial goals to seek independence? 18. What was the impact this injury had on your life? 19. Why do you see my thesis as important?

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Craig Sicilia 1. Denied it for a good year 2. Medical diagnosis, saw you as a liar, was fired by the liquor board, sued them and won. Absolutely faced discrimination because no one could understand my injury. Seen as a liar, I was fired. TBI act, helmet laws are the number one cause of death ad disability, the 2600 bill. Social actions were the survivors being unified with this commonality.

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3. No thinking, couldnt control myself, impulsivity, reason and emotions, filters for word choice. Took my daughter to walmart for her first bra, saw a fat lady and figured she could help 8. Seclusion from family, socially unable to interact properly, zero vocal filter, still just learning my limits, realist, and see things as you are, promoting recovery was very beneficial. Kevin A. Phillips 1. Law of polarity, belief, you get what youre given, education, sister/mother, Radio show, first public acknowledgement. Family and friends just couldnt understand it. 2. Medical diagnosis, saw me as a liar. 4. Received a counselor, Maggie, and she helped accommodate 5. Was unwilling to become drug dependent like the doctors sought, began to use cannabis, which is used incorrectly and has a negative connotation in society but for me, it works. Each individual has there own way of accommodating. 7. August incident, gun, learn limits, counseling, The August incident that Kevin refers to is an event that helped change his life after his injury; after not being aloud to be a part of even see his daughter he considered suicide. Thankfully, he was stopped by the people who did care about him which has led to him becoming more a part of the TBI network in Washington, where he continues to help other survivors and help inspire fellow survivors by reminding them there is a way to accommodate yourself and push through the struggles you have immediately and the years directly after your injury. There is a fear with most survivors of being seen in a different light than a normal person is due to the effects that the injury has on your life.

Paul and Nichole Davis

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1. Perception needs to be changed, different for everyone, felt a burden, tried to hide things, stress, self-moderation, and center for cognitive rehab 19. My hope would be that is raises awareness about TBI. Survivors are all different, each TBI is different and the masses need to realize that. It is tough when you tell someone you have a TBI and they think they know what that means and how to help you. Every day is different with a TBI and the best help anyone can be is embracing the differences and just supporting the survivor. I have learned it is hard to offer any empathy to some with a TBI because most people haven't been there, even if they are a fellow survivor. Getting my story there is always important, the more people hear, hopefully the more they will know how tough it can be.

Logan Olson 1. I live out loud! Because life is always beautiful, even w/a disability!! Im very transparent, so I just say it when needed. 2. How did you move back into your normal social life? Was it any different? If so, how? Very different; I was 16 year old when I sustained my brain injury; 16 year olds dont want to slow down to watch my lengthy recovery. I made lots of new friends! 3. My impairments are: Short Term memory, balance and fine motor. 4. I wanted to return to High School. I wanted a Diploma. I wanted a Career. I wanted friends. I wanted to travel. 6. Yes, many times. I would just use it to teach me how to be an advocate. Some people just forgot that I was a person with goals, determination, dreams and desires. 7. More dependent on others, just the way it is. Stopped fighting and learned how to help people hear my wants and desires.

 8. Asked a lot of questions. 9. Memory Book.

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11. No Way! But now I know its my call! I am determined to make the best of my life change. Im a better person because of it. 12. Sometimes, but I walk on. 17. Ive learned how to communicate my goals, keep sharing until someone listened. Seems to work. 18. My life is fuller, my family is closer, my career is richer, and my friends are more compassionate and meaningful. I understand Life is More Beautiful.

Freeman Thompson 1. I didnt want to believe that I was messed up and different, so I didnt communicate them. 3. Memory, names, being able to form sentences, I got better with time. 4. Sat in on classes at my alma mater, tutored, was tutored, did simple things like grading papers. 7. I was wondering when I was going to wake up. After that I was wondering why people didnt just put me in an institution. Parents decided to take me out of the hospital after 5-weeks instead of the recommended 5-months. I didnt get out much; I was completely oblivious of the changes in who I was now. I was ambitious before but I wasnt not after. 8. Didnt know about or receive any accommodations One sentence: dont underestimate yourself, the power of the human mind.

Care Takers/Third Partys

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NOTE: Participants were not forced to answer questions and some of the questions needed to be reworded due to the participant not understanding. There will be many questions with no answers because of this. The following interviews consist of caretakers, family and other third parties for survivors: Laurie Olson Mother and caretaker of Logan Olson Coni Coleman Austin Wattenburgs mother

Caretakers/third party Questions 1. How they communicate their invisible injuries to people? 2. How were difficulties interpreted? 3. Various struggles for the patient? Family? Community around them? 4. How did the doctors affect the recovery?

Coni Coleman 1. He has been able to disguise his injury with his word. He isnt even trying to look for new ways he is just embracing the old Austin. Hes just trying to be his old self all the time. 2. None of them have been, medical has not been accommodating, cat scan/physical care, mental care has not happened. It has been a huge waste of his time. No one is accommodating, all of his friends have disappeared, and the community left him. 3. Isolation for 9.5 months, friends have come and gotten him and hes been getting completely wasted. Hes been getting back to who he was before the accident, normal old self, eating problem, medical marijuana, his addictive personality has come back. Doctors are not helping! Never seen a counselor, no one would give him one. Jail time, no young adult facility, therapy,

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No payment plans, TBI homes, not help available, Friends continue to try taking advantage of him. 4. Department of Social and Health Services (DSHS/insurance) would nix anything with the doctors. Insurance doesnt work. Doctors, plan needs, help but cant help them pay. Need to emphasize cognitive rehab instead of physical. Neurosurgeon, problems, referrals for help, he would give them out.

Laurie Olson 1. I live out loud! Because life is always beautiful, even w/a disability!! I was open about my disabilities and wasnt afraid to say it. 2. Prayer. 3. Acceptance. 4. They were amazing for physical recovery. The emotional was up to family, therapists and Logan.

Therapists/Doctors NOTE: Participants were not forced to answer questions and some of the questions needed to be reworded due to the participant not understanding. There will be many questions with no answers because of this. The following consists of Doctors or therapists for TBI survivors: Darren Packard Portland - Accent Reduction Specialist, Speech Language Pathologist at Packard Communications Beverly Alexander Speech-language pathologist, providence St. Vincent rehab

 Rachel Harmon Headstrong worker, social worker Therapists/Doctors Questions 1. How did the survivors communicate their invisible injuries to the public? 2. How were difficulties interpreted? 3. Various struggles for the patient, family, and community around them? 4. How did the doctors affect the recovery?

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Darren Packard 1. Family and friends understand; dont have to let them know. Friends may have heard about accident but on different levels of detail, through grape vine. Depending on how highly publicized the family and community makes it, personal decision to reveal information, it is helpful to be open though, discuss their differences, communicate their need more, little distractions, avoid discussion of injury unless they need accommodation, repetition, difficulty with memory, recalling information, cameras, overstimulation, checklists, directions, simple lists. 2. Depends on the person, special accommodations, no exposure leads to a more harsh reaction, and knowledge of injury, publicizing it! 3. Being able to understand their difficulties which was where support groups came in handy in being able to paint the picture for possible future struggles. It is different for every situation. 4. Varies, use it as motivation, use their expectations as a goal, and need hope! Discourages people. Dont misinform them. Grey areas.

Beverly Alexander

 1. Glasgow coma scale, assessment, evaluation tools, attention, concentration, planning

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organization, who their public was, school/home/work, Misdiagnosed, unable to communicate, unsure themselves until a specialist diagnosed, moderate, mild and severe. No visible signs. 2. Largest is the lack of education for the public, understanding difficulties and being able to accommodate 3. Different for every survivor. 4. Depends on the doctors, awareness v. unawareness. Education.

Rachel Harmon 1. Going back to school, peers judging, and relationship loss, transitioning back to normal life. 2. Rehab psychology, emotions, dealing with changes, help parents deal/hook the survivors up with improvement, meet others, community around them is key, overwhelming, larger community, researching out to their own support system, leaning on friends, rehab programs, 3. Going back to school, peers judging, and relationship loss, transitioning back to normal life. 4. Depended on the doctor and the title or type of doctor. Different doctors had different effects.

Conclusion From the interviews I performed I think it is stunning just how apt and able-bodied most TBI survivors are; of course there are a few outliers that have been through some frustrating times but those are only temporary difficulties. It is difficult having a hidden disability and that has been the reason for me following through with this study. These struggles and difficulties in

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life are not much different from the average day for people, as you get older your memory will begin to diminish One of the most common mistakes in the diagnosis of a TBI survivor is that they are inept and are unsuitable to remain in regular activities of the average person. The interviews were able to show their common struggles but by pushing themselves they have been able to accomplish so many other feats in their lives. Misunderstanding the injury and the individual is a major problem with TBI; everyone is very different so circumstances constantly change. From my experience, I had to relearn everything I had learnt over my 19 years of life. I had to go from being a little dependent hospital ridden child to being fully self-sufficient and performing at a college level in a few months. Nothing can and will ever prepare you for the difficulties you may force yourself to overcome in order to be released into that once normal lifestyle again. One of the common discussions I have had with other survivors from Washington is that no one will understand, not the doctors, not your family, not your friends, not anyone you used to be able to rely on. The only people you can rely on being able to relate to are other TBI survivors which is why there has been such a drastic increase in support groups rising up around the country. Through these groups you are able to communicate your difficulties and relate your problems to these like people. No one will ever understand what your mind was or is like during the times of reemerging from your near dead state of life but by reaching out to others who have had similar experiences you can learn and teach them. As I displayed with the interviews everything in life becomes much more difficult and to add to that the community around yourself will expect the same until they are informed by some

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medical official of just how this injury has affected you. The intention behind this was to inform the public of the commonality of this injury and hopefully create an initiative to research and learn about this subject further. This epidemic has become known only to few who have encountered it first hand, we need the world to know of the effects this has on the individual and how the community can prepare itself for other instances of this injury. As awareness has increased there have been more support groups, charities and overall organizations that have been created in order to help TBI survivors continue to live an efficient and successful life. The common misconception that TBI survivors cannot readapt to society is a strong misconception, of course there will be difficult times but arent there difficult times when raising a child? Going form a child-like mind frame and then being forced back into adult situations is not an accepting or positive way to move into the recovery stage. We cannot just go straight back to being our old selves, we have to be patient with survivors and know that with the right circumstances and treatment survivors will get better much faster. Society must readjust its expectations for survivors for a list of different areas, which adjusts for the survivor. The accelerated learning curve does not make is any easier for survivors to adjust to their The main purpose of this study was to inform the public, to make the public more aware of the difficulties that each day survivors must wake to confront, life is not that easy and its even harder when no one believes you have injuries, that you arent faking them and that they are real. Each of the injured parties were not the only ones affected by their injuries, their communities were affected greatly as well, if not destroyed. Through those struggling times and being able to open up as well as reach out to the community that formed around them after their

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incident they learned to accept the person that they had become and communicate that with the public. This epidemic has been growing and is affecting more and more people around the world as medical technology continues to increase the chances of living after traumatic events in peoples lives. As talked about sports injuries are becoming more of contributor to TBI survivors and this needs to be addressed in order to protect the youth and everyone else in the world. Each individual affected by the injury has their own means of dealing with the way this event effects their life but we as a community have a responsibility to inform the public of ways to protect and fight against this common injury. Searching for information for these injuries as they become more common is something everyone should take part in to become aware and gain a better understanding just what others are experiencing.

 Bibliography:

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Traumatic brain injury in the United States: emergency department visits, hospitalizations, and deaths. Atlanta (GA): Centers for Disease Control and Prevention, National Center for Injury Prevention and Control; 2010. Faul M, Xu L, Wald MM, Coronado VG. Traumatic brain injury in the United States: emergency department visits, hospitalizations, and deaths. Atlanta (GA): Centers for Disease Control and Prevention, National Center for Injury Prevention and Control; 2010. Lehr Jr./Professor Emeritus, Department of Anatomy, School of Medicine, Southern Illinois University, Robert P. "Brain Function." Traumatic Brain Injury Resource Guide -. School of Medicine, Southern Illinois University, n.d. Web. 25 July 2012. <http://www.neuroskills.com/brain-injury/brain-function.php>. "Why are brain injuries so complicated?" Hazelton Injury Attorneys. Hazelton Attorneys. <http://www.hazeltoninjuryattorneys.com/faqs/why-are-brain-injury-cases-socomplicated.cfm>. Vines/ Family of a Vet, Brannan. "What is Traumatic Brain Injury (TBI)?" What is TBI? 05 Aug. 2012 <http://www.familyofavet.com/what_is_tbi.html>. "Broken Brain Brilliant Mind." Broken Brain. The Neurolaw Trial Group. 05 Aug. 2012 <http://brokenbrilliant.wordpress.com/2010/02/02/the-difference-between-concussionand-mild-traumatic-brain-injury/>. Sports, ESPN Action. "Kevin Pearce makes progress." ESPN. 21 June 2010. ESPN Internet Ventures. 05 Aug. 2012 <http://espn.go.com/action/snowboarding/news/story?id=4786214>.

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Thurman, David J., Clinton Alverson, Doug Browne, Kathleen A. Dunn, Janet Guerrero, Renee Johnson, Valerie Johnson, Jean Langlois, Diane Pilkey, Joseph E. Sniezek, and Susan Toal. "Statistics Potential Effects Causes & Risk Groups Reports & Fact Sheets Social & New Media Heads Up Injury Center Topics Saving Lives & Protecting People Home & Recreational Safety Motor Vehicle Safety Traumatic Brain Injury Injury Response Violence Prevention Data & Statistics (WISQARS) Funded Programs Communications Press Room Social Media Publications CDC's Injury Center 6 Share Add this to... Favorites Delicious Digg Google Bookmarks Traumatic Brain Injury in the United States: A Report to Congress." Centers for Disease Control and Prevention. 01 Apr. 2010. Centers for Disease Control and Prevention. 05 Aug. 2012 <http://www.cdc.gov/traumaticbraininjury/tbi_report_to_congress.html>. "Traumatic Brain Injury: Hope Through Research." : National Institute of Neurological Disorders and Stroke (NINDS). Feb. 2002. 05 Aug. 2012 <http://www.ninds.nih.gov/disorders/tbi/detail_tbi.htm>. TED: Ideas worth spreading. Perf. Jane Mcgonigal. TED: Ideas worth spreading. 05 Aug. 2012 <http://www.ted.com/talks/jane_mcgonigal_the_game_that_can_give_you_10_extra_yea rs_of_life.html?source=email>. ShareATT. "AT&T Don't Text While Driving Documentary." YouTube. 20 Dec. 2010. YouTube. 05 Aug. 2012 <http://www.youtube.com/watch?v=DebhWD6ljZs>. Traumatic Brain Injury - A documentary on soldiers and veterans (Pt. 1) . Dir. Intheirboots. YouTube. 08 May 2009. 05 Aug. 2012. Phillips, Craig J. "My Journey Thus Far." My Journey thus Far Part 1 (2007). http://secondchancetolive.wordpress.com/2007/02/18/my-journey-thus-far/

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Cifu, David X., MD, Sara I. Cohen, MD, Henry L. Lew, MD/PHD, Michael Jaffee, MD, and Barbra Sigford, MD/PHD. "The History and Evolution of Traumatic Brain Injury Rehabilitation in Military Service Members and Veterans." American Journal of Physical Medicine & Rehabilitation 89.8 (2010): 688-94. The History and Evolution of Traumatic Brain Injury Rehabili... :. Aug. 2010. Web. 22 Aug. 2012. <http://journals.lww.com/ajpmr/Fulltext/2010/08000/The_History_and_Evolution_of_Tr aumatic_Brain.13.aspx>. Tony, Perry. "National Institutes of Health to Study Junior Seau Brain Tissue." National Institutes of Health to Study Junior Seau Brain Tissue. L.A. NOW, n.d. Web. 21 Aug. 2012. <http://latimesblogs.latimes.com/lanow/2012/08/junior-seau.html>. Appel, Antoinette R., Dr. "Traumatic Brain Injury: The Invisible Injury." Traumatic Brain Injury Lawyers California. Scarlett Law Group, 2012. Web. 22 Aug. 2012. <http://www.scarlettlawgroup.com/the-invisible-injury.html>.

Interviews: Packard Communications, Darren. "Darren Interview." Telephone interview. 1 June 2012. Darren Packard - Portland - Accent Reduction Specialist, Speech Language Pathologist at Packard Communications. Telephone interview. Beverly Alexander - Speech-language pathologist, providence St. Vincent rehab. Personal interview. Rachel Harmon - Headstrong worker, social worker. Telephone Interview. Maggie DePuye-Phillips - Caretaker/wife of Kevin Phillips. Personal interview. Laurie Olson - Mother and caretaker of Logan Olson. Questionnaire.

 Logan Olson, TBI Survivor and founder of Logan Magazine. Questionnaire. Coni Coleman Survivors mother. Telephone Interview.

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Craig Sicillia, TBI survivor and Founder/Coordinator at Brain Injury Radio Network . Personal interview. Kevin Phillips, TBI survivor and Military veteran. Personal interview.