By Dr. Gregory Player

No where man

“All he said is Eddie Garland?” ask the man working ski patrol.

 “Yeah, that’s it. He has no idea where he is and has no ID on him.” The two ski patrol workers discuss what to do with the wandering man.

He had been lying bewildered on his back in the hard packed snow less than thirty minutes ago. After being transported down the base of the mountain on a portable stretcher he is now the responsibility of the Aspen Ski Patrol. A burly man with a black and white goatee enters the infirmary. “Do you think we need to call an ambulance?” one of the workers asks the bearded man. The man strokes his goatee in thought.

“What did you get out of him?”

“All he said was Eddie Garland. I guess that could be his name,” he answers.

“Wait, I know Eddie Garland. He’s one of the snow board instructors.”

“So do you think we should get an ambulance?” the patrol worker asks again.

“I think we should get Eddie Garland down here.”

Twenty minutes go by waiting for Eddie Garland and the ski patrol learns no more information. They are all relieved to see the smiling freckled face and long auburn hair of Eddie enter the room.  “You know this man? Because all he seems to know is your name?”

Eddie answers, “Yeah. Hey man, you ok?” Silence.

“We haven’t been able to get anything out of him.”

Eddie laughs but stops quickly when he realizes it’s not a prank. His face sobers and he says, “I’ll take him to the ER.”

At the hospital

In Aspen Valley Hospital I lay listening to the hum of a CT scanner. The date is March 14, 1995. The CT searches for any abnormality from my head being catapulted from six feet onto the ice and snow. Snowboarders call it “catching an edge”, an unfortunate event whereby a side of the board digs into the snow and thrust the rider towards that side with alarming speed. A haggard but friendly neurologist reviews the images and comes out to discuss them.

He has curly hair and a crooked smile. “It looks as if there is no real damage done. A contusion. Shaken not stirred,” he jokes. “You should get your memory back slowly,” he tells me. He looks at my friend Eddie, “Eddie is it?” He nods his head and the doctor motions to watch him. “You see how his pupils constrict to this light. That’s called a pupillary reflex. If there is swelling in the brain this reflex is absent. You need to do this every four hours for the next two days. Any visual changes, nausea, trouble walking, worsening confusion, you let me know.”

With that paucity of information I am discharged to the care of my old college roommate and best friend, Eddie Garland. My memory is completely wiped clean. Not only is my memory gone, I have what is also known as anterograde amnesia: the inability to form new memories, at least for a time.

Who am I?

Eddie, his girlfriend Francis and their roommate, Chrissie, patiently answer my questions. But when the same questions keep coming only minutes apart, their patience begins to wane. An information sheet is produced in an attempt to end the badgering. A purple sheet of lined paper with sentences in blue ink: the only link to my past. Written down in succinct phrases are the basics of my present existence. My name is Greg Player. I live in Athens. I am here on break visiting my best friend Eddie. I am studying to get into medical school but first have to get my grades up and take some extra courses. I drive a Toyota Camry. I quit my job selling life insurance. The last bit leads to a repeated exclamation, “Whoa, what’s this, I sell life insurance? Is that lame?” They would all laugh, at least the first couple of times they hear the question. Then the follow-up question, “What does Eddie do?”

“Eddie is a snow-board instructor,” is the repeated answer.

Then, “Cool, that sounds cool,” I say. This went on for hours, days- the peppering of questions and the canned responses. “What I’m a doing here? Do I have a girlfriend? and finally does Chrissie have a boyfriend?”

In unison they yell, “Greg, look at your information sheet!”

“How I’m I supposed to be a doctor now?” I ask. But I’m not really concerned. Despite my head trauma I am surprisingly at peace. I’m surrounded by unadulterated beauty. I can appreciate the beauty in a way like never before. Like a newborn I see everything for the first time, and it is untainted. I view in wonder the awesome snow covered mountain peaks, the Aspen trees, the pure rivers and the open sky.  

My mind is precariously perched on a known reality and the unknown. I hover on the edge of conscious thought. But the unknown is not frightening, more like a fatherly embrace. Ironically, though my mind is disrupted it allows me to view the perfect pattern of God’s work. Like never before I have an awareness and appreciation of nature’s stable harmony. And as the perfectly formed snow flakes fall on the mountainous landscape around me, so do the pieces of my brain settle perfectly into place.

Perhaps the oddest experience of losing my memory is viewing an unknown face in the mirror. It is if I have been reading a book for days and have a clear idea on what the main character should look like. Only the movie comes out and he is cast completely different. I step full of curiosity to the mirror above the bathroom sink. For the first time, or maybe the first I remember, I see the face of the man staring back at me. He is darker than I would have anticipated, even ethnic in appearance. And more rugged, I would have suspected a softer face.

I enjoy the world in awe for days. Everything is new and I accept it all: the taste of a cheeseburger, the rush of a Jacuzzi in the frigid cold, even the shock of tobacco smoke filling my lungs.

As my days in Aspen march on, more and more of my memory returns. I am filled with abounding energy, so much that Eddie finally relents and decides he can not keep up with me hourly. He lets me go out, but only after posting a sign on my back that reads ‘If found return to Eddie Garland’.

With the return of my memory come the familiar problems that have been temporarily forgotten. They come back slowly like a black cloud entrenching on a clear day. Those familiar ruts worked deep in my brain that I curse gradually return. I am no longer free from self-doubt, self-consciousness or cynicism.

I try to cling to the untouched and unqualified beauty around me. So much so that I quickly write down my thoughts before they change back completely. The phrases are simple but powerful. I must enjoy the small and simple things in life. Fight against all that is cynical and evil. Keep things pure.

But I can not match the familiar habits and I slowly lose the ability to accept anything without analysis. I become once again a judge: of others and worst of all myself. I yearn for the time when I appreciate all the simple beauty the world has to offer. A time when my mind is blank and I see the world without critique. The time of tabula rasa. 

By Mary C. Cantwell And Michael R. Grego

As I recover, change is a constant in my life.
Some changes occur quickly, in a quite precise manner,
as I attempt to return to my former state of health.
Other changes come forth very slowly.
They may take a little bit more time
which is not always to my liking.
All the changes in my life have taken my time
and hard work to make it through.

My own memories are as clear as day to me.
Some people I know tell me otherwise.
Is my mind playing a joke on my consciousness?
Is this the comedic role I’m given in my life?

I guess what makes me the angriest is
when people won’t ‘get’ exactly what I tell them.
They misunderstand the meaning of what I say.
They choose not to take it in
or “view” the circumstances or situations the way I see it,
from my personal perspective.

I actually accept the new me in my mind situations,
hands down!
The new physical me is a completely different matter.
I would rather rewind the movie of my life
and go back to the way I was
before the consequential circumstance that
changed my life forever.
Therefore I’ve accepted my fate
although I will do anything to change the course or the track
that my life has chosen at this point in time.

Before my accident I felt I had the power
to control the way my life would go.
When I first became aware of the changes in me,
I knew I had completely lost that control.
Now I only go where ‘the chair’ takes me.
I don’t like not being in control of my own life.
It’s not a comfortable feeling.

I am not the same Michael as I used to be.
Yet, I am the same Michael.

For more poems by Mary and Michael see:

Musings with Mary and Michael

By Mary C. Cantwell and Micahel R. Grego

If you look it up in the dictionary, it will tell you that ‘musing’ means:

•           noun: a calm lengthy intent consideration

•           adjective: persistently or morbidly thoughtful; pensive; pondering

 By Jeff Therrien

I began wondering why I need to be so careful with what I say. I forever question myself strongly; this often takes over my thought process. I am very fortunate to believe that everything happens for a reason. I am also very fortunate to have a comedic relationship with the spirit within. I came to a wild discovery while explaining all of this to a dear friend of mine. Early on I convinced myself that my voice no longer belonged entirely to me. Now the question is; when do I take it back?

I just say it!

What I am referring to is the ‘no-filter’ clause which is a very common symptom with most forms of brain trauma. This means when a thought comes to mind, it is spoken before given the chance to consider whether or not it should be. The following exercise may clarify. Think of someone you may despise. What is the first thought that comes to mind? Now imagine you said that to this person. I have walked away from several conversations only to look back and wonder why on earth I said what I said. This has happened with family members, friends, clients, and of course, prospective clients. I will admit I have left many conversations feeling cold. Fortunately for me I know many forgiving souls.

Letting go of my voice was not a justification. It was more about self forgiveness and realizing “that wasn’t me.” Every other alternative I came up with was an attempt to control something that was out of my hands. Some may laugh when I mention the ‘no-filter clause,’ and I can assure you some may even envy me. Imagine for one moment letting it all out, all the things you’ve wanted to say to this person or that person over the years with no control. This is one of the tougher symptoms of brain trauma. Even those who understand this may have been hurt.

I’ve become much better over time, yet sometimes I slip and throw another dagger. I’ve learned in moments of fatigue or over confidence, my new filter may be out to lunch. What can I say? I often have trouble believing my brain is still healing, until I look back at moments that are far out of character.

I apologize to just about everyone I have had a conversation with over the past two years, as I’m sure a dagger of brutal honesty was thrown your way. I hope some good came of all this, as I still need to believe that “It wasn’t me.”

The lesson: letting go.

By Mark Palmer

One bad choice

One day when I was 15 years old I lied to my family about where I was going, got in a car with an inexperienced driver, headed for Detroit, and was broadsided by a city bus.  I suffered a traumatic brain injury (TBI) caused by a depressed skull fracture.  I went into a coma.  The doctors who performed emergency surgery informed my parents that I was not likely to survive the operation.  If I did, I was not likely to regain consciousness.  If I regained consciousness, they expected me to be severely handicapped. 

Six weeks later when we were heading home—my father and I in the front seat, my mother leaning forward from the back to protect me with her arms every time we went through an intersection—we were celebrating. Through the skill of surgeons, the care of nursing staff, and the prayers of scores of family, friends, and even paper route customers, we had beaten the odds.  I was a living miracle. 

Although I wasn’t “back to normal,” we believed that was only a matter of time.  After all, six weeks ago I’d been unconscious!  Now I could walk, feed myself, and void.  Although my entire left side was extremely weak, a few weeks ago it had been paralyzed.  My right arm was in a cast, but that would come off soon.  I couldn’t speak intelligibly, but when I first came out of surgery I couldn’t speak at all.  I had a four-inch gap in my skull covered only by a bandage, but we just needed to find a neurosurgeon to install a metal plate.  In other words, we were so grateful and relieved I was alive and well enough to be home that all remaining difficulties seemed trifles by comparison.

Reality hits home

For most TBI sufferers, that ebullience would erode over time and frustration with their continuing inability to “get back to normal” would set in.  The hard facts of TBI are that discharge from the hospital means only that the acute crisis is over; now the chronic one begins.  In my case, the chronic health issues included nocturnal grand mal seizures that repeatedly dislocated my shoulders, continuing sinus and vision problems, speech and language processing difficulties, numerous additional surgeries, and—always—constant pain.

Yet my hard-headed refusal to accept physical reality kept me from acknowledging even fear or frustration.  Perhaps because I felt responsible for causing my parents so much anguish and expense, I resolved never to let my accident or its consequences stop—or even depress—me.  I minimized the pain and difficulties I faced.  I stopped reporting my nightly seizures.  I laughed off being able to spell only 10 percent of words correctly on weekly quizzes.  My teachers passed me anyway.  I went to college, got married, had kids, built a career, and just kept demanding that my body perform for me—no matter what compensations it had to make in order to do so.  After 34 years of this, I was in agony nearly all of the time—and so were those who loved me.  They watched me suffer, but I wouldn’t even allow them to call it suffering.  I was in denial.  I had unrealistic expectations. 

Change of direction

It took a new doctor—34 years after the accident—to say something that got me to accept my actual situation.  He said, “With personal commitment to being a little better every day, you should be able to compensate for most of your brain damage.” 

My mind reeled.  Brain damage?  What brain damage?!  I was normal, wasn’t I?

I thought all the way back to that hospital homecoming in 1965, when we were all so convinced my “return to normal” was imminent—just a few short days, weeks, or maybe months down the road.  My parents had been through so much, I didn’t want to disappoint them by not getting back to “normal.”  I’d been muscling my way through life ever since. 

And, to tell the truth, it wasn’t just my parents I was determined not to disappoint—it was me.  If I wasn’t “normal,” what was I?  It was a question I’d never given myself a chance to answer. 

My doctor’s pivotal comment set me on a new trajectory, which began with acceptance.  I had to accept that TBI had caused brain damage and that my attempts to override that fact had made matters worse—forcing my body to invent new neural pathways to convince the wrong muscles to perform the tasks I demanded of it.  Leaving me in constant pain.  Putting my loved ones in constant pain, as well. 

A little better every day

I have since spent 10 years working patiently to address my physical limitations, rather than denying them.  I have adopted more realistic expectations.  I now have a new normal, which is also my mantra.  It’s called “A little better every day.”  With acceptance, patience, and hard work, my pain has diminished greatly.  I now can swim, rollerblade, and play on the floor with my grandkids.  I keep working, knowing that my new normal is a work in progress.  “What am I if not normal?”  A little better every day. 

Realistic Hope: Aspirations for Survivors of Traumatic Brain Injury

By Mark Palmer

To order your copy, click here.

By Jeffrey Therrien

Underlying Obstacles

Different obstacles seem to have an affect on one another. I discovered that the inability to connect things matched up with a short-term memory problem often has me believing the hill is too hard to climb. Although frustrating, the first step is to redefine myself post-injury. On May 1^st 2008 I fell seventeen feet through a commercial roof top onto concrete. I broke seven ribs, tore my right rotator cuff, and yes, my head met the floor as well. 

One example I can share to dissipate confusion is hockey. I love the game of hockey for many reasons, I have been playing since I could walk and I have two older brothers and a mother who shared their passion with me. One year after the accident I tried to get back on the ice with some great friends of mine to have a little fun and get some exercise. I told myself going in that I did not have to go full bore, and came to discover 110% is the only way I know how to play. Two things happened as a result.

I discovered I had a short temper that was far out of character for me. So short that by the time I realized I was angry, I was way beyond the line we all know we shouldn’t cross. As far as the details of the incident, lets just say a few unnecessary words were spoken and perhaps a hockey punch or two. This came to no surprise to anyone as the rules change on the ice; players have come to accept it as un-chartered territory. The point I’m trying to make was although no one seemed upset, I knew internally I had reached a point where I was completely out of control and only had access to the fight or flight part of my brain. As tough as it was to walk away, knowing it was the only solution for now, I did exactly that.

Unexpected Fatigue

The second problem I encountered was debilitating fatigue in the days that followed. I walked off of the ice feeling relaxed and well, only to find myself unable to think straight in the coming days. One of the tougher things to handle with a brain injury is that when exhaustion hits, it takes about two weeks to feel like oneself again. I’ve caught myself over the edge many times with feelings of anxiety and depression simply due to an exhausted brain. I had many ways to inspire myself to take action before my accident. Books, music, movie clips, a short walk or even talking to an old friend. These no longer work. I’m just now on the tail end of a weariness spell. The only solution I’ve come up with is to warn myself ahead of time. I still feel odd telling myself to let go of my aspirations for the next two weeks after one bad night’s rest. If I don’t relax, I will push myself harder and harder only to end up feeding the beast and inviting it in for an extended stay.

Learning to avoid fatigue and rage is an important part of healing my brain and my life. Apparently I need to continue to learn and relearn some lessons more than others. I completely forgot my first hockey experience and two months later, when another friend asked me to play, I said Yes. All I thought of from my previous experience was being tired after playing, so I assumed that my body and mind had healed and changed since then. I figured this time I will have more energy and be all set to play without issues. I did not remember the moment of complete anger and lack of access to my logical self until about ten minutes after history repeated itself again. “Oh yeah” I thought to myself, “I can’t play this game; someone may get hurt.”

A Lesson Learned

Now for round three, only this time in a floor hockey league. Towards the end of a game the slightest provocation switched me into the warrior mentality of life or death, fight or flight. I had failed to remember the important lessons I learned in my previous two hockey adventures until a few minutes after an altercation. Hockey and I were forced to split ways again.

The reason I’m writing this entry is to force myself to understand and remember that playing hockey is not in my best interest right now. As for the reader seeking to understand a little bit about brain injuries, imagine a life where highly emotional moments have a way of escaping the memory until being placed back into that intensified flash. To speak of and be told of the severity of my emotions on the ice isn’t enough to make me remember, nor is an invite to play again…it simply isn’t enough. I had to repeat the experience to relearn the lessons, and then write this entry to remember to say “no” to hockey.

The Tough Good-Bye

One of the toughest decisions I’ve made over the past two years was to stop playing my favorite sport, and I had to make it three times. I love the game, yet I pray this is my last good- bye.

By Marilyn Lash, MSW

Effects of brain injury on marriage

With nearly half of all marriages in the U.S. ending in divorce, it’s been widely reported for many years that the rate of divorce is even higher among couples when a spouse has a brain injury. Divorce rates ranging from 48% to 78% are comm.only given. 

The stresses and challenges for couples are well known – ranging from the physical demands of caregiving to the emotional stresses of living with a spouse whose behavior and personality have changed.  In addition to the physical, cognitive, and emotional consequences of brain injury, many couples deal with the stresses of lower income due to the survivor’s unemployment and social isolation as friends withdraw. 

New research on marriage and divorce after brain injury

Research conducted in 2007 by the Traumatic Brain Injury Model System at Virginia Commonwealth University has looked more closely at this belief and has reported new and more positive findings.  Their study included 120 people with mild, moderate and severe brain injuries who were married at the time of their injury.  Their average age was 41 and it had been 3 to 8 years since their injury.  The study found that 3 out of 4 or 90 out of 120 survivors were still married.  This starkly contrasts with the common belief that divorce is widespread among couples after brain injury. 

Additional findings from the researchers are:

• The overall rate of breakdown among couples was 25% (17% of survivors were divorced; 8% separated).
• There was no difference in marital breakdown rates between male and female survivors.
• The more serious the injury, the greater the likelihood of divorce.
• Age mattered; survivors who were older when injured were much more likely to stay married.
• Length of marriage mattered; those who had been married for more years before the injury were more likely to stay married after the injury.

The authors concluded that this study “…does not support the notion that divorce rates for persons with brain injury are higher than those for the general population.”

Source:

Kreutzer, J., Godwin, E., Marwitz, J. (2010). The Truth about Divorce after Brain Injury. TBI Challenge! Winter, 3.

For more information, see: 

Brain Injury It is a Journey

By Flora Hammond, M.D. and Tami Guerrier, B.S., Editors

This brain injury book for families explains consequences of traumatic brain injury and gives strategies for coping with changes in the survivor’s physical abilities, memory, attention, thinking and emotions.

Explaining Brain Injury, Blast Injury and PTSD to Children and Teens

By Marilyn Lash, M.S.W., Janelle Breese Biagioni and Tonya Hellard

When a parent is injured, sons and daughters often feel confused, scared, anxious and angry. This guide helps parents explain the physical, cognitive, behavioral, social and communicative changes that can follow a brain injury, blast injury or PTSD. Using examples from children of all ages, it helps them understand their emotional reactions to a parent’s injury or PTSD. Each chapter has an exercise for children and practical tips for children, parents and professionals.

By Dawn Neumann, Ph.D.

TBI changes communication in a marriage

The woman in my office was clearly a very successful woman, who for the most part, usually had it together.  But now it appeared she could fall apart at any second. She was there to talk to me about her husband who had a traumatic brain injury (TBI). She told me that since the accident, he had made terrific strides learning to walk again, improving his balance, and regaining most of his thinking skills. 

Despite these monumental improvements, there was still a terrific strain in their relationship.  She no longer felt “connected” with her husband. The wife was frustrated and perplexed. Prior to the injury, which was just months before they were married, he was an extremely compassionate person always in tune to her emotions. Now he was oblivious to her needs.  He never comforted her in times of sadness or worry. He was unresponsive to her frustrations.  He never participated in her joys, not even when their first child was born. Was this because he didn’t care?  Most people would assume so, but as you read on, you will see that this is because he just couldn’t tell how she was feeling.      

Brain injury can affect relationships with everyone

We all know relationships can be very challenging. This does not just refer to relationships with spouses, but relationships with family, friends, coworkers, and even acquaintances. Add a brain injury into the mix, and these relationships can become even more stressed. In fact, relationship problems are one of the most frequently reported long-term and devastating consequences after brain injury. They often cause families who have been touched by a brain injury to become fairly isolated and have dwindling support networks.  

In the last decade or so, researchers have slowly started to realize the impact of social challenges on an individual’s quality of life and well-being. Scientists are trying to understand the different sources of relationship problems after brain injury and figure out ways to address them.  

What changes after a brain injury?

Why does it become more difficult for many persons with brain injury to develop and maintain relationships? Well, a lot of things change, but an area that researchers are very interested in now is emotion. This is not simply referring to people who have trouble controlling their emotions, which often makes social interactions uncomfortable. It’s much more complicated than that.  

Reading and responding to needs and emotions of other people

What is the key to good relationships and social interactions? How well we interact depends a lot on being able to read and respond to other people’s needs and emotions, while effectively communicating our own. Let’s review why this is trickier than it sounds.  

For the most part, people don’t always tell us what they need or how they are feeling. Instead, this information is subtly expressed through facial expressions (for example, knitted eyebrows), tone of voice, or body language. Believe it or not, recent studies show that as many as fifty percent of people with a brain injury have a harder time correctly “reading” other people’s needs and emotions. They may not pick up on these subtle cues or inferences, and only pay attention to the words that the person actually says – which is only half the picture. 

Missing or mistaking emotions

Research has shown us that after a brain injury, people may tend to see no emotion when there is one, or mistake one emotion for another. Both errors have significant consequences. If a person sees no emotion when there actually is one, the person won’t respond to another person’s emotional need because it is not recognized. For example, if the person doesn’t realize that a spouse is sad or a boss is annoyed, there is no reason to offer comfort or to take action to solve the problem. If the person mistakes one emotion for another, such as assuming someone is angry when someone is actually sad, the interaction is more likely to be confrontational rather than supportive. This behavior would obviously be a problem.  

Expressing too much emotion

It’s not only important to be able to read the emotions of others, but it’s also important that we accurately and appropriately express our emotions to others. After brain injury, we often see exaggerated expressions of anger or sadness. The pitfall with expressing these emotions is that this might not be what a person is actually feeling. People who express a lot of anger are often feeling other emotions, such as fear or sadness. However, they may act angry because they are not aware of their other emotions, or because they don’t know how to express or deal with their sadness or fear. 

In cases where the person is feeling angry or sad, they may “take out” these emotions on people who were not responsible for causing these emotions. In instances when they are angry with the person they are interacting with, they may be verbally or physically aggressive because they may not be able to handle their emotions rationally and/or not know how to communicate these feelings in a calm way. 

Language and cognitive problems can present an even greater challenge. Nonetheless, inappropriate expressions of anger are likely to receive an undesirable response, such as pushing people away or inflicting anger, when what is really needed is support and understanding. 

Showing too little emotion

In contrast to those who are overly expressive with their emotions, there are people who show very little emotion after a brain injury. This will also be a problem for relationships and social interactions. When we talk with people, we try to get an idea of how they are feeling so that we know how to respond to them. If we can’t tell how they are feeling, it creates a lot of questions. Do they enjoy spending time with me? Does this person care about me or how I feel?  What do they think of me? When people are not emotionally expressive, social interactions can be confusing and unsatisfying.    

Sharing emotions builds relationships

The bottom line is that relationships are built on emotional exchanges that result in shared emotional experiences and the understanding of one another’s feelings. We must tune into the emotions of others and make sure we are kindly expressing our own. These are skills that often become more challenging for individuals after brain injury. The good news is that it appears to be a skill that can improve with treatment.

References:

Radice-Neumann D, Zupan B, Babbage D, and Willer B (2007). Overview of impaired facial affect recognition in persons with traumatic brain injury.  Brain Injury: 21(8): 807–816.

Radice-Neumann D, Zupan B, Tomita M, Willer B (2009). Training emotional processing in persons with brain injury.  Journal of Head Trauma and Rehabilitation: 24(5):313–323.

About the author:

Dawn Neumann is a Postdoctoral Research Fellow at Carolinas Rehabilitation in Charlotte, NC.

Reading recommendations

OOPS! Social Skills after Brain Injury

By Harvey E. Jacobs, Ph.D.

Procedure for Assessing Awareness and Adjustment Following Brain Injury

By Kit Malia and Anne Brannagan

Brain injury rehabilitation manual on assessing awareness and adjustment in adolescents and adults with brain injury in rehabilitation and community programs.

By Marilyn Lash, Editor

Individuals who live with the consequences of brain injuries have something very special to offer other survivors, family members, and professionals. It is hard for anyone who has not been through it to fully understand what it means to have a brain injury, to relearn how to function and live again, and to slowly move forward in life again.

The Survivor Forum has articles by survivors about their recoveries and their lives. It is a place for information and support for other survivors. It may also help families understand what it means for a survivor to live with a brain injury.

Professionals often have intensive but brief relationships with survivors while they are in their programs or receiving treatment. Professionals often wonder what happens to these survivors “down the road”. We believe that survivors can also educate professionals about the journey of recovery over time by sharing their experiences.

The road to recovery is often complicated, confusing and filled with ruts and potholes. It is also a journey that has no end. It is an ongoing path throughout the life of a survivor. We hope that this forum helps survivors navigate this journey.

Please contact us…

This forum will explore many areas. We will be constantly adding topics and articles. If you would like to send us an article to consider, we would like to hear from you. Below are guidelines to submit articles.

Topic…

Your choice as long as it is based on your experience.

Length…

2-4 pages double spaced

Format…

Microsoft Word file or file saved in rich text format.

You can send an article by e-mail…

Please click here

Or you can mail your article to:

Marilyn Lash, Director
Lash and Associates Publishing/Training, Inc.
708 Young Forest Drive
Wake Forest, NC 27587
Tel 919-556-0300

Suggestions…

If there is a topic you’d like to hear about from survivors, please let us know.

By Jean Langlois Orman, ScD, MPH

How many traumatic brain injuries occur each year?

What are the statistics for people living with long-term disabilities after TBI?

How is this data gathered, and why have the numbers changed in the last few years?

BrainLine advisor Jean Langlois Orman, ScD, MPH (Scientific Program Manager for Brain Injury Rehabilitation Research and Development Service at the U.S. Department of Veterans Affairs) wrote “How Is the Prevalence of Long- Term Disability Counted,” a short article that explains the processes that the Centers for Disease Control and Prevention use to collect this type of information – available online click here. 

QUESTION: How are traumatic brain injuries (TBIs) “counted”?

ANSWER: Accurate “counts” of the numbers of TBIs are challenging to obtain, especially for large populations such as for the United States or even for an individual state. Typically, surveillance is used to estimate the number of TBIs. Surveillance is defined as “the ongoing systematic collection, analysis, and interpretation of health data necessary for designing, implementing, and evaluating public health programs.”

The Centers for Disease Control and Prevention (CDC) conducts surveillance of the incidence of TBI and the prevalence of TBI-related disability in the US by routinely analyzing national data from the National Center for Health Statistics (NCHS). This data includes

• TBI deaths,
• hospital discharges, and
• emergency department visits.

NCHS data for hospital discharges and emergency department visits are based on sampled data from hospitals around the country rather than an exact count of these discharges and visits. Thus, the resulting numbers are estimates. Depending on the needs of a particular project, CDC sometimes uses TBI data from other agencies, such as the Agency for Healthcare Research and Quality (AHRQ).

Incidence refers to the number of TBI events that occur each year in a specific population or geographic region and represents the number of people who experienced a TBI event. It’s important to note that these numbers include people who experienced a TBI and recovered from the injury. The most recent published estimate of the incidence of TBI in the US was 1.6 million TBIs in 2003. (Rutland-Brown et al., 2006).

Prevalence of TBI- related disability refers to the number of people in a defined geographic region, such as the US, who have ever had a TBI and are living with symptoms or problems related to the TBI. This excludes people who had a TBI and recovered from it. The prevalence of TBI-related disability is much more complicated to estimate because we do not have a system that follows people with TBI over time to see who recovers and who has long-term or lifelong problems, so we have to estimate this as well. And we also have to take into account the number of people who had a TBI and later died. The most recent estimate of the prevalence of Americans living with disability related to a TBI hospitalization is 3.2 million (Selassie et al., 2009).

QUESTION: Can you comment on the seeming decrease in the estimated prevalence long-term disability after TBI?

ANSWER: Yes, the previous estimate was 5.3 million Americans living with disability after being hospitalized with a TBI, (Thurman et al., 1999) and the new estimate is 3.2 million. The reason for the seeming decrease has to do with the different methods that were used. In the most recent estimate, we had better data and were better able to account for the numbers of people with TBI who died and were disabled. It was mainly the improvements in the methods that led to the seeming decrease. But it’s also important to note that the estimate is only for people living with TBI-related disability who were discharged from the hospital, so it is an underestimate. It does not include people with long-term problems who were treated and released from emergency departments or who received no medical care. Service members injured outside of the US and those treated in military healthcare facilities here in the US also are not included. This is because the data needed for these groups is currently lacking, but we hope to have more complete data in the future.

QUESTION: How often does the methodology for counting the number of TBIs get updated?

ANSWER: A number of researchers and agencies report TBI data and routinely look for ways of to improve the methods they use. The CDC works with 33 states to gather TBI information about the incidence of TBI on an annual basis. Of these, four states collect extended TBI surveillance data including causes, risk factors, and severity. CDC and the individual states periodically publish this state TBI data. CDC also publishes a summary report on TBI in the US. The next report is expected to be released in early 2010.

QUESTION: What does this change in the prevalence of disability estimate mean for the world of TBI?

ANSWER: Because the new number is based on new methods that are easier to apply, it should be much easier to update the estimate on a regular basis, accounting for changes, and more closely track increases or decreases in the number of Americans living with TBI-related disability over time.

QUESTION: How can prevalence of disability estimates be used?

ANSWER: As mentioned above, prevalence of disability is the number of people who have not recovered from their TBI and are living with long-term or lifelong problems. This information is especially helpful for policy makers, healthcare planners, and advocates because it gives an idea of the number of people with TBI in need of rehabilitation, services, and/or supports. At a national level, it can also be used to highlight the needs of people with TBI compared to those living with disability from other conditions.

Written for BrainLine by Jean Langlois Orman, ScD, MPH, Scientific Program Manager for Brain Injury Rehabilitation Research and Development Service, U.S. Department of Veterans Affairs: www.va.gov.

BrainLine.org is a WETA website funded by the Defense and Veterans Brain Injury Center through a contract with the Henry M. Jackson Foundation.

Used with permission from BrainLine.org, a WETA website. www.BrainLine.org.

By Ethel Dimont

An undiagnosed brain injury

It never occurred to me that what seemed like a minor automobile accident would change my entire life.  Nor did the seriousness of it leave a deep impression on my future caretakers.  They insisted for almost three years, that….It was not serious.  It’s just temporary.  It’ll take patience and a lot of effort to get better. 

Without the diagnosis of brain injury, I did not understand my symptoms

I had lots of patience and effort.  Those qualities had always worked in the past when I was required to cope with serious challenges.  It never occurred to me it would not work now.

But the realization of the error of my thinking came too late to avoid what could or might have been avoided had I received a diagnosis and early treatment for a brain injury.  What was required was the correct medical care for my brain injury.  I did not realize this hadn’t happened until all the symptoms had become chronic.  My effort alone was not enough.  The brain injury eventually took control of my life, thus making it more difficult to reverse the negative results.

Life plays tricks on us

With no plans to celebrate my birthday, it started like any other day- a day at the office, home to prepare dinner, attend a French study class for our first trip to Europe and Israel, where my husband was invited to lecture.  Not in my wildest dreams could I, a NJG (nice Jewish Girl) from the Bronx, ever have entertained such an idea that on that day my brain would be damaged.  But, life plays tricks on us, some good, some not so good.  

Treatment of brain injury can be costly – not treating it is even more costly

Like most accidents, it could have been avoided.  A speeding car hit us, damaging both cars and me.  The insurance company paid for repairing both cars, but would not pay for my serious injury because of the high cost involved.  Instead, they interpreted my description of the changes that occurred from the blow to my head and the brain injury as psychologically motivated.  This fit me into their lower or non paying insurance category – their interpretation of my story cast me as a malingerer.

To avoid high costs, they instructed my friend, the driver of the car I was in, “not to discuss the subject with me” and he never did.  Believing my driver was a friend was my error and I paid a high price for this error in thinking.

Optimism does not heal the brain

The last thing I remember was that we were going to be hit.  The first thoughts I remember were, “Where was I, why was I here, flat on my back, cold, naked, wrapped in a white sheet.  What could I be but a corpse?”

It took days before I learned the truth.  I had been in an automobile accident.  I was not aware of the major problems that were coming even after I was capable of asking the right questions.  By not getting evaluated correctly, the answers to my questions did not help.  

My always optimistic approach to problems, asserted itself as it always had done. Being overly optimistic was a major mistake.  It made me assume I was getting correct, thought-out responses to my questions, until I learned otherwise.  It was too late to avoid the damage and chronic symptoms that were left undiagnosed too long.  After two years of optimistically seeking help from the medical world, and getting nowhere, I decided to seek help from other sources.

The invisible injury to the brain

I started doing research which took me from modern times back to the middle 1850s.  I discovered that an invisible injury was considered psychological in nature, instead of physically induced and so it was treated as an emotional problem,  thus the diagnosis of “malingerer.” 

It’s sad to say, this type of diagnosis still happens today.  Fortunately, there are many options and avenues in which to find answers today.  If your story is similar to mine, keep seeking, the right answers are out there for you.  Be careful not to accept just any answer because it came from a “doctor.”  If you aren’t getting better, there may still be something wrong with you and time and effort will not heal.  Keep seeking, the right answers are out there. 

December 2009

If you would like to know more about Ethel Dimont, go to http://www.etheldimont.com