In May 2007, I wrote and published the article, Traumatic Brain Injury and Denial — My Perspective as a TBI Survivor.
In today’s article, Brain Injury, Facing Denial and Creating Hope to Have a Good Life, I share a revision and an update to that article.
The Beginning of Awareness
I met with a group of friends tonight, in May 2007. During the time together, I felt led to share some of my struggles as an individual living with the impact of a traumatic brain injury survivor with a friend of mine’s girl friend.
You see, my friend went through a series of interferon treatments several years ago to treat a malignant 4 stage 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.
I shared my experience, strength and hope with my friend’s girlfriend, because she was debating whether she was going to continue dating him. I shared with her because of what I thought was important. That she loved him despite how the interferon treatments affected his brain.
What I shared from my Experience living with the Impact of a Traumatic Brain Injury with my Friend’s Girl Friend
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.
Months after the surgery, after being taken out of the full body (Spica Cast) that I remained in for 5 months until my femur healed) and after learning how to walk, my parents took me to meet with a neuropsychologist. At the appointment I underwent a battery of cognitive, psychological, and social tests.
Results from the 1st 2 EEG’s and Neuropsychological Evaluation done in 1968 at the age of 10
One EEG was done with little spikes that were pushed into my skull. The 2nd EEG was done with electrodes that were pasted on my skull.
Results from those tests were shared with my parents, however they decided to keep the findings from me. I did not find out about those results of the test done in 1968 until the day of graduation from the masters program in rehabilitation counseling. My Mom shared what the neuropsychologist told her and my dad concerning the results of the EEG’s and the battery of neuropsychological testing in 1968.
The results showed that I was not expected to succeed beyond my high school education.
I went on to obtain my undergraduate degree in 10 years (4 different majors) and my graduate degree in rehabilitation counseling in 3 1/2 years (2 masters programs and 2 graduate schools.
After I received my Masters Degree in Rehabilitation Counseling and my Credentials as a Certified Rehabilitation Counselor
Another piece of the puzzle that chipped away at my denial — approximately 2 years after I completed my graduate degree.
The experience was not unlike many of my professional and non professional jobs that I had through out my 20 + years in the work force.
While working as a master’s level rehabilitation counselor in the Florida Department of Vocational rehabilitation, I began having difficulties performing my job duties, as well as interacting with other staff members.
In my frustration, I decide to disclose to my supervisor that I experienced a traumatic brain injury when I was 10 years old, given that I was in jeopardy of losing my job.
Disclosing my Traumatic Brain Injury to my Vocational Rehabilitation Supervisor
She in turn told the manager, who in turn told the district supervisor, who in turn had a meeting with me. The district supervisor determined that it was in my best interest to become a client of the department of vocational rehabilitation, while still working as a DVR counselor.
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, after being terminated as a DVR counselor. As you might imagine, this period of time in my life provided confusion and depression.
Given my Own Rehabilitation Counselor
After being given my own rehabilitation counselor, I was scheduled to undergo another EEG. My DVR counselor also arranged for me to undergo a neuropsychological evaluation. The results from the EEG confirmed that I had some brain damage. I then met with the neuropsychologist to complete the neuropsychological evaluation over the course of 2 Saturdays.
Three weeks after I completed the evaluation, I met with the neuropsychologist and went over the results of the testing. I also 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. He stated that I had somehow been able to obtain both my undergraduate and graduate degrees despite the findings of the neuropsychological examination.
He stated that I had somehow been able to obtain both my undergraduate and graduate degrees despite the findings of the neuropsychological examination.
His findings and report did not make any sense to me. His findings and report left me frustrated and bewildered.
How could I be able to obtain my undergraduate, graduate degree, and my national credentials as a certified rehabilitation counselor, but not be able to function at an undergraduate or at a graduate level in traditional work settings?
The conclusions drawn by the neuropsychologist seemed to be in direct contradiction with what I had been able to accomplish academically.
He said that I had succeeded far beyond all reasonable expectations through sheer persistence and motivation.
Results of my Second EEG and Neuropsychological Evaluation in Florida shared with my Family
When I shared the results of the tests with my family they all thought the neuropsychologist did not know what he was talking about concerning my level of my functioning. For the next 3 to 4 years I continued to work under the assumption that the neuropsychologist’s 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.
My Relationship with my Dad and Denial
Even after I had been declared unemployable and disabled, part of me continued to believe that my parents and my brother were right and the test results were bogus.
My Dad also mercilessly criticized my inability to stay employed, not accepting that I was living with an invisible disability.
Prior to facing my denial, my dad’s inability to accept my reality crushed my ability to love and accept myself. My Dad wanted to believe that if he pushed me hard enough that I would straighten up. My dad never fully accepted that I was doing my best and continued to blame me for what he could not or would not accept.
What made matters worse for me was that I berated myself for my inability to maintain employment. As a result, I maintained a sense of shame and guilt for not being able to not be affected by the open skull fracture and brain injury that I sustained in the motor vehicle accident in 1968. In the process, I maintained a low-grade chronic depression.
For many, many years, I had no idea that although I looked “normal”, I was struggling in life because of my invisible disability.
Recruited by an Insurance Company and Moving to North Carolina
In 1996, I was recruited by an insurance company to work as a master’s level rehabilitation counselor and certified rehabilitation counselor in the field of workers compensation. Four months after moving from Florida to Charlotte, North Carolina and beginning the job, I was told my services were no longer needed and I was terminated.
Bewildered, I replied for the 3rd time with the Social Security Administration (SSA) to begin receiving SSDI. I also applied to begin receiving services through the North Carolina Department of Rehabilitation (NCDVR).
After completing the evaluation process with NCDVR, I was told by my counselor that I was unemployable. Shortly after receiving this news from NCDVR, my 3rd application was approved by the SSA and began receiving SSDI benefits in the beginning of 1999.
Being deemed to be unemployable and declared disabled, was both frustrating and relieving. Frustrating, because I had diligently applied myself for many years — but was unable to maintain employment in a traditional work setting. Relieved, because I had lived for so many years with financial insecurity.
Although I felt like someone, “all dressed up with no where to go” I still wanted to use my gifts, talents and abilities.
Because of the Length of the article, I decided today to divide the article into 2 Parts. To read Part 2 of the article, please click on this link: Brain Injury, Facing Denial and Creating Hope to Have a Good Life Part 2
To listen to and watch the video presentation of Part 1 of this article, click on this link: Brain Injury, Facing Denial and Creating Hope to Have a Good Life Part 1 Video Presentation
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