Life with multiple undiagnosed traumatic brain injuries
by Bob Westbrook
(a survivor of Traumatic Brain Injury)
I think it started with the unhappy and sometimes violent marriage I was born into. When it was discovered that my mother had placed me in a 24-hour day care, my grandmother "bought" me from her, gaining legal custody. There were great concerns because my right side didn't seem to work well and I didn't communicate or socialize well either. Yet I was highly intelligent, learning to read in a matter of weeks when told the balloons on the comic books told what the figures said and able to solve complex puzzles at six years old. There is a strong possibility I had or have Asberger's Syndrome. Regardless, I never got along, never had friends, was physically awkward, and was the kid everyone picked on. I had serious emotional-control issues, with an anger that would rage in a heartbeat.
At 14, tired of being beat by my father, who took custody of me when I was five years old, I ran away. When found I was sent to my maternal grandmother, who took on the challenge of raising a very rebellious boy. I found acceptance in the drug culture of high school and, for the first time feeling like I belonged, jumped in with both feet. I was still socially inept and never dated or had a girlfriend. I was also the kid who was most gullible, easily talked into doing anything.
At 16 I ran into the side of a car at 40 miles an hour on the off-road motorcycle I commonly drove illegally all over the small West Texas town I lived in. Unbeknownst to me, I broke my neck; that would be discovered years later. Whether this caused additional injury to my brain I'll never know, but my behavior escalated to include greater illegal activity. On my 17th birthday I was placed on a bus for basic training by a judge after stealing a car. Despite having only completed the ninth grade I passed my GED and scored so high on my military entrance exams that I was scheduled to be trained as a crew chief on B-52s. My tested IQ was 136, putting me in the top 98 percent of this country.
Military life didn't work well with me, and I continued being a social outcast. With the Vietnam War just ending, I was strongly encouraged to take an honorable discharge after serving only one year of the four-year enlistment. With that I returned to the drug culture I was familiar with, and at 19 was sentenced to prison for drug possession. Texas prison was a shock, to say the least. Upon my release two and a half years later, I enrolled in a Bible college to pursue becoming a pastor, definitely determined to avoid the previous mistakes of my life.
There I met the first woman I fell in love with and shortly after we got married. Graduating, I was ordained and moved to Toledo, Ohio, where my wife was from. Then I fell out of a tree. I broke my neck and back and received a concussion. This was when it was discovered I had broken my neck before. The doctor came in with the X-rays and asked when I had broken it before, showing me where the vertebra had healed after being splintered.
The recovery process was long and painful but the hardest part was the drastic personality change. There was no explanation for this from any of the doctors; no one seemed to have a clue what was going on or why. Here I was, a pastor, flying off in anger and calling waitresses "Honey" in a flirty manner with my wife next to me. This scared her and her family so much that they encouraged her to file for divorce. What a wrenching, heart-breaking time this was. Just tore us both up.
I remarried, too quickly, a woman who was unfaithful to her husband, divorcing him to marry me. Poor judgment would be an understatement. It was the beginning of a rough 17 years, but I became a successful businessman, founding two companies that at one time had 127 employees. The first one was a marketing company that provided services to area corporations, and I also was a consultant teaching them how to find and sell to customers as well as develop their corporate image. Not bad for someone with no business college education at all.
Then I fell 20 feet from the pallet racking in my warehouse. This brought another drastic personality change. My secretary later told me I became an instant assxxxx. It was the start of everything unraveling. I began making poor business decisions, my already shaky marriage really fell apart with me catching her with another man, deep depression set in, and I returned to drugs and drinking, which just made everything worse. I got in trouble with the law again and was placed on probation.
The day after I signed my divorce from my second wife, I loaded what I could in my car and headed back to Texas. I made it as far as Oklahoma, where I fell asleep at the wheel. It was a horrible wreck, and I was pronounced dead at the scene. In fact, I am still listed as a fatality on Oklahoma's computer. This was November 11, 2001.
I began to wake up from the coma just before Christmas of that year. It was a slow process, like coming out of a fog. Gradually things became clearer, and I was a little bit more aware during these periods of consciousness. I was in a hospital bed with something wrapped around my neck that prevented me from moving it. My hands were strapped down to the sides of the bed. The bed had a netting surrounding it to keep me from falling out. I saw a nurse come in and tried to talk to her. When that happened, there was a commotion. I heard someone say he's awake, and then others came running in. A doctor asked me if I knew my name. As I tried to answer the voice I heard was high-pitched like a child's. It added to my confusion as I wondered whose voice it was.
I knew my first name, and after some effort I think I recalled my last name. Then I was left alone and laid there trying to comprehend what was going on. Where was I? How did I get here? What was wrong with me? Why am I tied down? I knew I was in a hospital, but that was it. Nurses would come in to change my diapers or check the I.V.'s that seemed to be stuck in every vein I had. They told me I was in Oklahoma City and that I had been in a car wreck. I was later told that while in a coma I was cussing and would tear out the tubes and I.V.'s requiring the restraints.
There was a TV in the room and I was given a remote control to it, which I could sometimes operate when it didn't fall or disappear where I couldn't find or reach it. Sometimes I wouldn't remember I had a remote and would ask a nurse to turn on the TV. I would just watch it for hours and wonder about what I saw. Much of it was new, and there was this sweet lady named Oprah. I admired how much she would help people. What I saw stirred me in strange ways, and I would cry often. Then some of my memories began to return.
They weren't good, a confusing patchwork of bits and pieces that I couldn't put together. None of them seemed to be pleasant. There was an intense sadness attached to most of them, along with anger. I knew that I had been running away to Texas, I had been in trouble with the law, and I had been using drugs. I remembered owning three companies. I remembered a wife.
I could remember my home phone number but not my home address. It was one of the first of the strange gaps in my memory that I began to be aware of. One of the nurses helped me to call home to my wife and her two kids, whom I had raised and who called me dad. When her boyfriend answered the phone, a flood of memories rushed in. I remembered catching her having sex with him and knew we had been in the process of a divorce. For a while I had said the divorce had been finalized while I was in a coma, but I now know that it had been settled prior to the accident. That night after the call, as grief overcame me, I began crying so hard that everyone could hear me down the hall. It was almost like the wailing cry of an injured animal.
I was soon allowed to eat real food but seemed to be full after only a few bites. My taste and smell no longer seem to work very well. There is nothing like having your diapers changed when you are 46 to teach you humility. I began to insist that I be allowed to walk so I could use the bathroom. At one point two nurses came in and pretty much carried me into the bathroom and even had to help lower me down onto the toilet. This is when I began to understand just how weak I was. I found out that my weight was only 160 lbs, a far cry from the 240 I had once weighed.
Now that I was awake and slowly becoming cognizant, the hospital began the therapy. There was a speech therapist, who would help me learn how to talk so others could understand what I said. She would also bring up puzzles and things to test my comprehension.
Without insurance the hospital was in a hurry to get me functional enough to justify my release. Now began the process of learning how to walk. I learned that I was partially paralyzed, which would explain why my right leg was always numb and had that tingling feeling you get when your leg falls asleep. It was strange that, as I was being supported, my left leg would move when my brain told it to but not my right leg. I was told that this was due to brain damage and that with time and hard work my brain would rewire itself. I had at first thought that my paralysis was due to my neck being broken, and this was the first I heard of brain damage, which it turns out is my real problem.
The hospital was going to simply escort me out the door with nothing but a hospital gown and have me taken to the Salvation Army, but they located my brother, who agreed to take me. I was released to my brother's care, and he took me to St. Louis where he lived. The hospital gave him clear instructions on the care I needed, including rehabilitation, but he was an alcoholic and had no interest in doing any of it. Instead he put me in a dilapidated building with broken windows and gave me $20 a week to live on.
When I wandered into a hospital months later they were shocked. Upon learning of my condition and situation I was taken to the social worker, who got me enrolled for food stamps and also put me in contact with the Brain Injury Institute. They began working with me, teaching me how to compensate for the effects of my brain injury. Things were starting to look up.
Unfortunately, I had violated the terms of my probation by leaving the state of Ohio. I was extradited back to Toledo. The judge took one look at me and sent me out for medical evaluation. They decided to reinstate my probation instead of revoking it, I suspect to avoid the high medical cost of caring for me. So I ended up on the street wandering homeless. The streets I had driven for over 20 years were all strange and unrecognizable to me. I would walk for hours looking for anything familiar. I found the warehouse where my businesses were housed and after five days of searching found my former secretary's house. I came to find out I use to live next door. She had heard I died in the accident, so it was quite a shock when she answered my knock on her door.
I would spend many hours at the library downtown where, after being taught how to use the computers, I would research who I was. There were articles in the paper about my companies, along with my picture. I knew I had friends but couldn't remember who they were, so I e-mailed the local television stations. One of them (Channel 13, ABC) picked up the story and ran a piece on me called "Toledo's John Doe." When it aired, lots of people called in who knew me and offered to help. Thus it was I got off the streets and was able to greatly reduce the stress that debilitated me. When highly stressed, my brain would freeze up, making it hard for me to even talk.
One of the callers was my first wife, Cherie. It was a shock for her to see me on television, her former husband a disheveled homeless man with amnesia. We hadn't seen or spoken to each other since the divorce over 17 years earlier. Cherie immediately picked up the phone to offer help, for she knew a lot about my past. I even had my age wrong on the program.
When we finally met again we realized we had never stopped loving each other and soon remarried. It's been seven years since the wreck now, and I am doing much better. I inherited my grandmother's farm in Texas, where we work to build a life on my disability check. It's nice because things move slow here, with much less stress. I still have problems socially but found a group that is understanding of my issues and that helps a lot. Cherie is patient and has learned how to help me get things done.
Hope this is helpful.
Every morning I wake up and I don't know what to expect. There is nothing resembling stability, nothing I can rely on regarding my perception and cognizance. Much of the time I do not know what day it is till I look at the calendar or ask my wife Cherie. Then I often forget and need to check the calendar several times during the day. I sometimes wake early with my mind racing and lucid. At those times, which I call prime time, I try to write what is on my mind because I can always go back and read, thereby recovering those thoughts.
You see, my biggest drawback or what has been labeled as my disability is my memory. As much as I despise the label of being disabled, I must resign myself to the reality of it. My mind wanders between something resembling my former above-average intelligence to being confused and unable to make a decision. There seems to be no predictability in this, which drives me crazy.
What is reliable is that when under pressure and stress my mind will degrade, and I will have a greatly reduced ability to process information. Trying to apply humor in this uncomfortable and awkward condition my joke has been, "I am either the dumbest smart person or the smartest dumb person you will ever meet; it just depends on the moment you meet me." Everyone I talk to says they have the same memory problems I do, so it is not so unusual or they understand. I know as we age this is a common problem and that they are trying to relate or be nice or something, but I dearly hope they are not as bad as I am.
Let me describe what it is like for me with the hope of understanding.
When I shower, I often can't remember if I washed my hair so I do it again. I require a written list of things I need to do or they will not happen. If I get distracted while in the middle of a task, I move on to the distraction and the task is forgotten. My life is full of started projects that have never been completed. Some of them are simple tasks that need to be done to enable agencies to help me, such as filling out requests for medical records. I forget where I am going as I go there.
I also lost the ability to time-sequence. What that means is I can be visiting a friend and be there 20 minutes and think it has been hours or be there hours and think I have only been there 20 minutes. In addition, what I remember I have a hard time placing in a time line—whether the event happened last week or six months ago.
I must keep a journal to remember what I did yesterday, last week, and last year. With the journal I can sometimes go back and unlock the memories. The little reminders are like keys that allow me to access the recesses of my mind. It doesn't always work and some memories just vanish. Again it is the unpredictability that drives me crazy. Sometimes I remember things clearly, sometimes not. I suspect this is a factor in people shying away from me or their being uncomfortable, but I don't know.
Despite having been an avid reader who devoured books, it is a great regret that I can now only do so with great difficulty. Every time I pick a book back up I have to start over, for I can't remember what I read before. I have several books I have gotten over the last year or so that remain unfinished. I have just not picked them back up out of frustration. I do occasionally read them with the hope that the information received will come to mind when needed. A vain hope but it occasionally works. I can retain information when I work hard at it. Bible study is one of the few areas in which retention works, for I transcribe it and write thoughts as I study on the computer. I then go back and reread it. Thus it is one area I can speak comfortably on without the freeze-up I go through when stressed and having to process information.
Preseveration is a word I found as I researched brain injury, for it describes a common behavior with TBI (Traumatic Brain Injury) patients. We repeat statements over and over. The main cause of this is simply we forget having made the statement before, so when we repeat it we think it is the first time. Another underlying reason I have this issue is I tend to mentally focus tightly on things, and when I do all else fades. Regardless of the reasons it occurs, it appears to be one of the factors in others avoiding me. Unfortunately, what I tend to remember is the things that bother me, because I mull them over in my mind and with the repetition those things become ingrained in my memory banks. It is hard to have a positive mental attitude when most of what you recall is the bad things.
Because of the memory problem I am always unsure of myself. There have been times in the past, as I worked on rebuilding this mind, that I have said and done things that were not appropriate. As I look back over the early writings that I made shortly after waking from the coma I see a scary disconnection from reality. It is comforting to know that as time passed this came into balance. But this past experience has been a great contributor to my insecurity. In those first two years, control of my emotions was a big problem. Consequently, I now always watch those around me, wondering as I study their reactions if I said or did something to offend them.
Without clear memories of even yesterday, every day is like walking into a new and strange world. I constantly have people who obviously know me say hi, and I don't have a clue who they are. As I walk through a crowd, many faces seem familiar to me, but I don't know if I know them. I have introduced myself to a few to learn I did not know them, and then on occasion I do. When I first came back to Toledo, there were several who would approach me. It became a standard question for me to ask. "Do you know me?" This would surprise them, as few are aware I had the accident.
Here is another aspect of this few will consider. When most think of memory loss, they think only of the recollections of events and places, but there is much more to it than that. Consider that your ability to judge and interact in social situations comes from the sum total of your life experience. Thus you know when to laugh because you can recognize a joke is being told. You know how to read those around you because of the memories of past experiences.
Imagine then that slate being wiped clean. When I woke up, all the world was strange to me. My first experience in this new world was watching TV from the hospital bed and interacting with the nurses. Then I went through many terrible experiences as I began to learn how to act in what was to me a strange new world. These experiences gave me the only background I could tap into, to kind of guess what was to come and what to expect of those I met. It was a strange mix of my unstable alcoholic brother, gangbangers, drug addicts, church people who were both good and some not so good, bureaucrats, bar people, corrupt representatives of the court, and medical professionals. It has been a time of much confusion for me as I tried to understand and function as my mind and body repaired itself.
With only those first experiences since waking up and broken memory fragments of life prior to the accident, it is no wonder I am lost in social situations. Add to that my inability to catch "hints" or understand nuances. I remember one guy who, when I told him my perception of an earlier conversation, looked at me incredulously and stated he was just kidding and could not believe I took what he said literally. This is a problem I will find hard to correct. I do normally take what is said literally, and I try to listen carefully so I don't make mistakes. I often have to ask for simple instructions on how to accomplish a task set before me after having gotten lost trying to process the instructions just given, during which the person giving the instructions assumed I could fill in the blanks.
In my desperate search for something I could rely on, a solid rock I could stand on, a measuring rod I could use to help me understand others and know the correct way to think, I turned to the Bible I had once known so well. I figured that in the Christian realm I could find an atmosphere in which everyone was on the same page. Here I thought I could find friends who could understand and at least hold out their hand for me to grab on the bad days. Here I hoped I would be in a realm where I understood the rules.
But this was not to be. I tried to explain what it is like to be me and was told I talk about it too much. When I asked for help it felt like everywhere I walked many of those I had hoped would bring moral support would distance themselves from me. I could go through a crowd at church and watch some duck away as they saw me approach. I thought it was my imagination and asked Cherie about it to double-check myself as I so often do now. She also noticed this, so I had a sad confirmation that I was not mistaken. I would have rather been wrong. I asked some about this, if I had in some way offended them, and was told by one of the church leaders I made her uncomfortable and she would not talk now. She thought I was mad, so I explained I was just confused.
Part of the problem I have is I no longer possess many of the communication skills most take for granted and seldom recognize because they have had them their whole life. I have a difficult time reading expressions and do not recognize hints and subtleties. I need things explained in simple, clear terms like a child. A child is a good analogy, for children too are developing their social skills and learning to communicate. Another problem I have is my face is usually not very expressive, which some have interpreted as being serious or angry. Guile is an art I lost and have no desire to recover. Unfortunately, it appears in this culture that not having those skills, not pretending to think or act in a way that makes you more acceptable, regardless of the truth, makes one an outcast. Honesty and telling others exactly what I think has caused much discomfort, so I try not to say anything. I'm just not good at putting on a false face, and I don't care to be.
Here are some of the positive parts of the short-term memory loss. I can watch a movie for the first time several times before I recall enough to not be surprised. An old friend has a satellite dish and gets many movies that we watch together. I will go visit and a movie will come on and I will say "Wow, I wanted to see this one," and Allen will tell me I had just watched it a week or so ago with him. So I watch it again, and it still has all the impact and surprises it did the first time.
For me, many moments are like the very first time in my life. I made a list of the "firsts" I have experienced since the awakening. With some of those firsts often come an unlocking of memories long buried or inaccessible because of the TBI. This sometimes comes in a flood of recollection that includes vivid tangible smells, sounds, and emotions. Imagine falling in love for the first time again, with all the overwhelming feelings and emotions. Now add to that a flood of returning memories from a door just unlocked in my mind. Memories of falling in love with the same woman 25 years earlier. My first love ever, our hopes, our dreams, and then our sadness. Now you have a glimpse of what it was like for me to meet my first wife after 20 years of separation, whom I recently remarried.
Unfortunately, as I explore my past and enjoy the floods of returning memories they often fade away into obscurity as fast as they returned, which is why I purchased a recording device to document these memories. I have been interviewing those I can find from my past with this recorder.
Now that we've covered some of the mental aspects, what are the physical issues? I get tired easily and usually have to take a couple of naps during the day. With my neck being broken three times and my back once and a body that has experienced multiple traumas, I live with pain daily, pain that is as unpredictable as everything else. My paralysis is evident during times of slowed mental function, for then I limp badly. I have migraines that vary in intensity; sometimes they are so bad I must darken the room and turn everything off because of increased sensitivity to light and sounds.
My senses also come and go at a whim, so much of the time I have a greatly reduced sense of taste or smell. But then it is so enhanced I feel like a German shepherd able to detect nuances normally lost to most. The smells and flavors I used to take for granted are now at times wondrously intense and bright. Of course, there are times when these moments of enhanced senses are not so wondrous. Things don't always smell good.
Because I rarely experience the sensation of being hungry and can't remember if I ate, I must schedule meals, and Cherie has learned to make sure I have eaten. I can go for days without food and not know it.
I have seizures, which I take medication for now. I experience what I call fading in and out. At these times I mentally slow down, in some cases dramatically. An outward sign of this is found in my speech. I begin to stutter badly and have to search for words. Stress coupled with having to make decisions or answer questions are big factors in bringing this on, but there are times I wake up like this. This I can often hide but not always. What is frustrating is that I have periods of lucidity in which my mind operates at something resembling my former intellect. I am sure this throws others off who see me when I am doing well and then don't understand the change. It is not uncommon for those with TBI to be suspected of using drugs because of this instability. During the slow periods I can get so bad I must be led as a child. Fortunately, I don't get this bad often.
Most of us have filters that allow our minds to weed out all the distracting sights and sounds and allows us to focus on what is before us. These filters are damaged in me, and at times I am overwhelmed by a flood of sensory input. In order for me to accomplish a task I must turn off all distractions. There are times when I'm in a public place I must leave because I am being overwhelmed with this flood of sound and activity. Even the sounds of ventilation, the hum of lights, my computer hard drive, the things you normally can filter, are right at the forefront during these times. When I am going through a slow phase, I tend to brighten up when around others, for stimulus helps activate my mind.
Like all people I want to belong and feel accepted, but this seems difficult for me. Hopefully with understanding will come acceptance. I face a staggering task of rebuilding a shattered life, while at the same time learning how to overcome this injury. I often feel alone, isolated, shunned, and that I am incapable of accomplishing anything. Depression is a big obstacle and is fed by these feelings. Imagine what it would be like to have been on top of the world, running three companies you built from scratch, being able to juggle multiple tasks and issues in your mind, and having friends and respect. Then waking up to what I have described above, to being lost and confused. I would gladly trade off this body and be confined to a wheelchair in exchange for a reliable mind. It is frustrating to experience the lucidity and intelligence I once had and then to slow down and get confused with little warning.
While I can't recall the thoughts and motivation I had when I started writing this, I do know it is a cry for understanding and some simple emotional support. I think the lady I work with at the Bureau of Vocational Rehabilitation suggested I write this, but I can't remember. As I look at the e-mails I have sent over the last two years, I see me apologizing a lot. If this is redundant or not appropriate I apologize in advance but ask that you talk to me about it, which will help me figure things out and not feel isolated.
My blog is walkedwithangels.blogspot.com
Bob Westbrook, Stanton, Texas