Traumatic Brain Injury and Denial–My Perspective as a TBI Survivor

Hello and welcome back to Second Chance to Live. I am happy to see that you decided to stop by to visit with me. You are always welcome around my table. I met with a group of friends tonight. During the time together, I felt led to share some of my struggles as a traumatic brain injury survivor with a friend of mine. My motivation was to provide encouragement and insight from my experience, strength and hope as a traumatic brain injury survivor. You see, her boyfriend went through a series of treatments several years ago to treat a malignant melanoma. The interferon saved his life, but in the process caused some brain damage. The damage to his brain has limited his ability to function at the level prior to the cancer treatments.

As I have shared in my post, My Journey thus Far (please read for further details) my brain injury occurred in 1967 when I was 10 years old. I was in a coma for 3 weeks and in traction to set my left femur, which was also fractured at the time of the accident. After being placed in a Spica or full body cast (for my left femur after completing traction) I was transferred to another hospital where I underwent brain and skull surgery. Several months after the surgery I went through a battery of cognitive, psychological, and social tests. I also had 2 EEG’s done—the first was done with metal spikes. Thank God technology improved by the time I had the second EEG, which was done with electrodes pasted onto my head and not drilled into my skull.

The results from these tests were shared with my parents, however they decided to keep the findings from me. I did not find out about those results until after I finished graduate school. My Mom revealed that the test results, done some 30 + years before, showed that due to the extent of my brain injury I was not expected to advance beyond my high school education. Another piece of the puzzle became apparent approximately 3 years after I completed my graduate degree.

While working as a master’s level rehabilitation counselor in a state department of vocational rehabilitation, I began having difficulties performing job duties as well as interacting with other staff.

This experience was not unlike many of my professional and non professional jobs that I had through out my 20 + years in the work force.

After working on the job for several months as a master’s level rehab counselor, I started having difficulties completing some of the job duties, as well as interacting with other staff members. In my frustration, I decide to disclose to my supervisor that I was a traumatic brain injury survivor. She in turn told her boss, who in turn told the district director, who in turn had a meeting with me. She determined that it was in my best interest to become a client of the department of vocational rehabilitation. Over the next 3 months I was transitioned out of my job as a rehabilitation counselor into the role of a client or consumer of services. As you might imagine, this period of time in my life provided confusion and depression.

After being given my own rehabilitation counselor, I was scheduled to undergo another EEG. My counselor also arranged for me to undergo a neuro psyche evaluation. The results from the EEG confirmed that I had some brain damage. I then met with the neuro psychologist to complete the neuro psychological evaluation. Several weeks after I completed the evaluation, I received a detailed report of his findings. The long and the short of the findings showed that I was functioning at a level above my abilities. The second revelation that the neuro psychologist shared in his report raised a key question. He stated that I had somehow had been able to obtain both my undergraduate and graduate degrees despite my cognitive and psycho social deficits. The Dr. went on to say in his report that he attributed my success to sheer persistence and motivation.

When I said his report raised a key question, I was not making an understatement. How could I be able to obtain my undergraduate, graduate degree, as well as my national credentials as a certified rehabilitation counselor, but not be able to function at an undergraduate or master’s level in the work force. The conclusions drawn by the neuro psychologist seemed to be in direct contradiction with what I had been able to accomplish. His findings did not make any sense to me. I was both frustrated and bewildered after reading his report.

When I shared the results of the tests with my family they all thought the neuro psychologist did not know what he was talking about concerning my level of functioning. For the next 3 to 4 years I continued to work under the assumption that the neuro psychologist findings were rubbish. My parents and brother continued to concur with the assumption that the reason I was having difficulty maintaining employment was because I did not try hard enough. Nevertheless, I continued to get and lose jobs.

Even after I had been declared disabled, part of me continued to believe that my parents and my brother were right and the test results were bogus. What made matters worse for me was that I berated myself for my inability to maintain employment. My Dad also mercilessly criticized my inability to get along with people. His denial crushed my ability to love and accept who I was in the face of what I could not understand. My Dad wanted to believe that if he pushed me hard enough that I would straighten up.

I share the above information with you, as I shared with my friend’s girlfriend to illustrate a point. Traumatic brain injury in many instances is an invisible disability. Although the individual may appear to be functioning well on some levels, they may still have a brain injury which grossly interferes with their ability to function on other levels.

My interest in sharing my story is to illustrate how a person with a traumatic brain injury can be misunderstood and minimized. What I needed most from people was understanding. I needed support and understanding because I had experienced a significant brain injury. But this understanding did not come for many years. I shared this information with my friend tonight in an attempt to help her understand that her boyfriend’s acquired brain injury should not be denied. I told her that denying the reality of his brain damage would not change that reality. Denial would only perpetuate his feeling of inadequacy and anguish. I also encouraged her to support her boyfriend and to not place demands on him. I encouraged her to accept his reality and to love the person. As we spoke, I emphasized that he was not his brain injury. Please read my post Traumatic Brain Injury — Following your bliss…regardless. Thank you.

For many years, I bought into different denial systems. I believed that I should be able to function as a person with out a brain injury. My denial was encouraged by those who could not or would not accept that I was indeed disabled because of a traumatic brain injury. Consequently, I continued to berate myself until I began questioning my own denial system. When I stopped trying to measure up to or be someone with out a brain injury, I was able to accept myself as a person with a traumatic brain injury.

In the event that you have someone in your life who has experienced an acquired or traumatic brain injury, please understand we are not faking it. We are not fudging or making excuses. You may have a hard time accepting our reality, but that does not change reality. We are not like people who have not experienced a brain injury. What we need most from you is support and understanding. Don’t make us live in your denial system. Please understand that we are doing the best that we can, just for today.

For my brothers and sisters who are traumatic brain injury survivors, do not give up on your selves. Keep the faith and keep trucking. Your brain injury makes you unique and magical. Revel in your position. You are beautiful just as you are. Follow your dreams. Dream big and do the footwork. Live each day with zest and vigor. I guarantee that more will be revealed in time, one day at a time. Most of all please remember that you are undoubtedly a very valuable and special person. You are not your acquired brain injury. You are a bright and shinning star and you are a gift to your world.

So where do I go from here? When will I find my Destiny?

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