Last post Fri, Apr 11 2008 5:37 AM by Deacon Patrick Jones. 22 replies.
Posted by secondchancetolive on May 12, 2007
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 Passion.
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.
Table Topics for the Soul – Journey to the Heart. LC Registration #: TXu1-330-434 Copyright © 2007
I am the mother of a tbi. My son had a car accident in 6/05. Since then, he has not been able to hold a job for a long period of time. He also has no ability to save money and buys what ever he wants with a credit card. My husband and I are at our wits end and don't know how to help him anymore. It is like he has given up on trying to re-wire his brain. Do you have any suggestions?
Hi Mom and Dad,
I am not a medical Dr. and I do not know how your son's brain was damaged -- the location and severity -- so I can not give you any medical opinions, as to the why. In my expereince and from what I have learned along the way, whatever behavior was present before the tbi occurred may be seen to be exacerbated in the individual after the brain injury.I am quite sure how to best recommend how to best curtail the excessive spending apart from taking away the credit card and placing your son on a strict budget. If your son lives at home you may have some say so as to how he spends money, however if he does not live at home you may need to enlist a life coach that has experience working with tbi survivors, not just someone that kinda, sorta has experience working with tbi survivors.
Because I was 10 years old at the time of the car accident that resulted in my being a tbi survivor, in the year of 1967, and because I was able to, by the grace of God and hard work I was able to teach myself how to walk, talk, read, write and speak in complete sentences I was never treated as a tbi survivor. As a result, I had to cognitively retrain myself --- being Neuo Rehab was not available in 1967. With all the advances in Neurological Rehabilitation and Cognitive retraining their may be a specialist that could motivate your son to stick to a budget. I do not like financial insecurity so I stick to a stick budget given I am on a fixed income too.
Again, I am not a Dr., nor do I know what kind of brain injuries occurred at the time of the accident, so I can not begin to suggest how to best proceed on the front of cognitive training. You may want to contact neuro rehab centers in your area to set up some additional life coaching. You may also like to contact the United Way and ask them to set your son up on a budget and then have someone meter out what he can and can not use the me money he earns or receives from a SSDI check or other fixed monthly income.I hope that what I have shared above has been helpful to you Mom.
Please keep me posted. Thank you.
Craig
Dear Craig,
Thank you for responding. David will be 21 in Feb of '08. He does not communicate or socialize with us anymore. Only when he has a question or it is an accidental meeting do we speak.
He suffered bi-lateral frontal lobe damage and deep inside the brain. He had a basaler skull fracture, loss of hearing in right ear and severe road rash on his back and left arm. He was life-lighted to Kansas City to surgical ICU. When we got there, they asked us if we had decided if we would be donating any organs. David made a miraculous recovery and was sent home a week later.
He can speak, walk, work and doesn't show any signs of a disability. However, if one spends time with him, his manner of thinking is odd and sometimes doesn't make much street sense. We have not given him any of the credit cards that he is using now, but do throw any new that come this way.
I am not familiar with life coaches and did not know that they existed. David has no insurance, mainly because he will not go back to school and does not keep a job long enough. He feels that he is going to be a police officer as soon as he turns 21 even though he has made no attempt to communicate with them or get a degree in law enforcement.
He tried to get into the military, but was denied because of the brain injuries. They told him that he could retry in a couple of years if his brain injury gets better. I guess now David thinks that it is going to go away.
Maybe these details will help explain our situation a bit more. Thank you for your patience. Diana
Hi Diana,
David has been through a tremendous amount because of traumatic brain injury. I am not a Dr., however from what I understand basaler fractures are frequently fatal. David is indeed a miracle. God bless him, you and your husband in your process's. No doubt you are all struggling as a result. In my experience I had to begin to accept my reality, the reality of having an invisible disability before I could begin to heal and make sense of my journey. If I may suggest, I have a 4 part series, My Struggle Living with an Invisible Disability http://secondchancetolive.wordpress.com/2007/08/14/my-struggle-living-with-an-invisible-disability/ and my 2 part series, Having an invisible disability -- the Consequence of Denying my Reality http://secondchancetolive.wordpress.com/2007/08/21/having-an-invisible-disability-%e2%80%93-the-consequence-of-denying-my-reality%e2%80%94part-1/
On Second Chance to Live at http://secondchancetolive.wordpress.com/ I present topics to help the reader to live life on life's terms. On http://secondchancetolive.wordpress.com/ I have a site map. May I suggest that you spend some time reading through the titles. I share from my experience, strength and hope on a wide variety of topics from the perspective of survivor, as well as from being a master's level rehabilitation counselor. You may also want to read my 3 part series, My Journey thus Far http://secondchancetolive.wordpress.com/2007/02/18/my-journey-thus-far/ to gain more insight into my process. The principles that I share through out Second Chance to Live can be applied to anyone who is looking for encouragement, motivation and empowerment.
I have a suggestion that you may like David to consider. Applying for Social Security Disability Insurance or SSDI may be a very practical solution. David may also like to apply for SSI, which is different than SSDI and will work to help him pay bills until he is approved to begin receiving SSDI. From what you are telling me about David, he may be eligible for Adult Medicaid too. Check with the Social Security Office in your area to begin the SSDI process, as well as and Social Services to have David meet with a case worker / interviewer to determine David's eligibility to begin receiving Medicaid. He can also apply for food stamps with the Department of Social Services. I would suggest that David get an attorney to represent him through the SSDI process. Many attorney's work on a contingency basis with no up front cost to you or David. An attorney could possibly expedite the process for David to begin receiving SSDI. Through the above process, David could be assigned a case worker who would help him apply and begin receiving other services.
Please feel free to stay in touch with me. You do not have to go through the process by yourself. Please read my post, The Power of Identification http://secondchancetolive.wordpress.com/2007/04/18/the-power-of-identification/
I will say so long for now. God bless you in your process.
Dear Diana,
First off, my heart surrounds you all. My son is a multiple TBI survivor. He is 21 now and finally gets it. What I've experienced with him is that at the young age of a male, acceptence is the hardest thing to do. Their whole world has been turned upside down and to admit it is like admitting you've failed in everything you dreamed of, were taught to do, required to do, hoped to do etc. He is at a socially prime of his life and to be disabled is way too much for him to admit. For healing, acceptance is key. And because of his age he has to come to it on his own with gentle supportive role from his closest allies, you and his friends that he feels safe with. (His friends are a great resource of the changes they have observed. They care about him and don't know how to dialog about it. Open up that communication link, you'll be amazed at the support you receive from this.) But you need a 3rd party. A Neuropsychologist is very helpful in identifing where the deficets are from the TBI. It helps your son and you know where the problems lay. Memory? processing speed? reading? sound sensitivity? cognitive? understanding directions? He needs to identify (and you) where the healing and therapy need to happen at. He is most likely struggling and not trying to admit it to you. Your right on, Mom. Your picking up on the basics that aren't there. My son was 15 with his TBI. No visual signs but the Neuropsychologist found major problems with processing speed. An A student that dropped to D's and F's. Socially prominent, socially outcasted after the TBI because no one could get the dramatic change. He fought hard to be the same, denying every report, every suggestion because he just wanted his life back. TBI's at this age, I feel, are the hardest. Especially when its silent in physical observation, yet prominent in functioning mentally. Children, at this age, are just trying to form their lives of their own. Be independent, as taught, yet with the TBI are trapped with such great need. He needs to know what is up for him. Patience, steadfastness, support and love are vital. Their self esteem is on the line. Every rejection, every non-performance of what they know their suppose to be hampers the healing of the TBI. Do you know of this website. If not, check it out. It has alot of good info and you can search by state. http://www.biausa.org. My son also has no insurance. I have found that everyone I have dealt with has been willing to set up payment plans or find alternative ways for funding. My son also knows to sign a release that allows me to communicate and discuss his condition with his doctors. He has been most grateful for the support of tracking everything along with him. It takes off alot of pressure. I hope I'm making sense. As I write this I realize I have a thousand or more things to say. It brings up alot of memories. My son was also airlifted. And I'll never forget the drive to get to him nor the emergency room nor the hospital nor the years to this date. It is life with a different bent that I would never would wish would happen to another person. But it is and to be engaged and active in it, like you, is the testimony of love. I'm there for you and your son. It will get better and healing is there. Time is a factor but your on the right track. Asking questions and moving forward. Positive outcomes happen. Tell your son, i Believe in him. He's great. Maybe the military is not what he needs to be doing. Maybe he has other talents that are waiting to surface through this all. And what are they? k
Hi Michael,
Hmm. I am not a Dr., so I can not advise you medically, however I would encourage you to make an appt. with a Neurologist and discuss your symptomology. He could rule in or rule out whether a there is injury to your brain. He or she can then point you in the direction of possible strategies to compensate for the effects you are experiencing. You are a champion Michael.
I would strongly recommend that you visit Second Chance to Live at http://secondchancetolive.wordpress.com/. When you visit Second Chance to Live, please read through the titles in my Site Map Michael at http://secondchancetolive.wordpress.com/site-map/ and read each of the posts that resonate with you. You do not have to be alone in your struggle to understand. Please read my post, http://secondchancetolive.wordpress.com/2007/04/18/the-power-of-identification/.
I hope the above has been helpful. Have a wonderfilled holiday season.
Craig J. Phillips MRC, BA
Second Chance to Live
Our circumstances are not meant to keep us down, but they are meant to build us up!
Brain injury is one of those things that never goes away. I, too, am not a doctor but have lived with a brain injured family member for 17 years. Memory problems seem to be the root of all evil because memory problems magnify cognitive problems. The combined confusion and frustration from those two sets of problems magnify behavioral problems.
Reading and working puzzles are a good supplement to therapy or a good beginning if an occupational therapist is unavailable.
Great point Larry about memory. Because brain injuries are very often invisible family and friends do not get the reality that brain injuries often result in memory problems, which as you poinantly stated magify behavioral problems, ect. Thank you for leaving this comment my friend. You are a blessing to the brain injury community. Thank you my brother!
Have a great day and God bless you!
am the mother of a tbi. My Doughter had a accident in 7/200 and is crime victim/coma 3/2007. Since then, she has not working.She have to lern walking and everything again. It is like he has given up on trying to re-wire his brain. Do you have any suggestions?
Thank you,
jolien
freejolien@yahoo.com
HI Jolien,
I am a little confused as to the date of the injury to your daughter. 7 / 200???. Has she been in a coma since that time? Can you please be more specific with me concerning your daughter?
After reading this post I see I am not alone. I have had this difficulty with my son for 15 years. I do the best I can. I am happy I found this site. I am sure I will be in contact often. Especially since we are now experiencing some of the same difficulties we had when my son first became a TBI survivor.
LARRY,
I was happy to see your post. I am the mother of a TBI survivor. My son was 18, never had work ethics or skills to fall back on later in life. He met a girl 5 years after his accident. She did not know about his difficulties but fell in love with him. Ended up getting pregnant and that was the beginning of very difficult times. I now have 2 grandchildren from this relationship. They are the apple of my sons eyes. However now his wife has realized she cannot fix things. So now that she has left I have to once again pick up the pieces. I sometimes wonder if I will ever have some piece in our life. I will accept whatever happens but it sure makes lifte difficult.
Hi Mom4U,
I am a traumatic brain injury survivor and a master's level rehabilitation counselor. I created Second Chance to Live on February 6, 2007 where I share from my experience, strength and hope as a traumatic brain injury. My url is http://secondchancetolive.wordpress.com. Traumatic Brain Injury and Denial -- My Perspective as a TBI Survivor is from my web site. I want to share another article below that may be of encouragement to you. Please feel free to contact me through a comment or a confidential email.
Have a pleasant day my friend.
Posted by secondchancetolive on February 13, 2007
This simple but profound concept alluded me for a large part of my life. You see, I thought that perfection was the benchmark of success. The demand of perfection clouded my eyes and I was unable to celebrate the progress I was making in my pursuits. Perfectionism kept raising the bar of expectation. The fear of failure coupled with a pervasive sense of shame seemed to be my constant companion, dissuading me from trying new projects, activities or goals. I was stuck in an abyss of fear and anxiety.
In my attempt to silence the voice of shame and inadequacy, I found myself tenaciously pursuing the illusion of perfection. As I continued to overcompensate, I found myself in a dilemma. Because the good that I did was never good enough, I found myself in an endless cycle of striving to be more and do more. As I began to realize the futility of my efforts to be enough, the clouds that once kept me under a yoke of oppression began to part and my spritual eyes were opened.
Through my pursuit to be free from this faulty belief system, I had spiritual awakenings. I began to realize that life is a process, not to be defined by outcomes. I also discovered that when I attempt to define my life by potential outcomes, I set myself up to be irritable, restless and discontent. In my process of growth, I have discovered that I could be satisfied with small successes brought about by the footwork that I set forth in all my endeavors. I have also discovered that it is in my best interest to trust the God of my understanding with any and all outcomes.
My belief system has changed. I no long feel the need to overcompensate, in order to prove my worth and value. I now know that I am enough. Trusting God with the outcomes frees me to enjoy the footwork. I now find myself encouraging people I meet along the path of life with this statement, “Take one step at a time, keep going at what you are doing and before long you will look back and see how far you have come”. This philosophy has inspired me to enjoy the process of living, which in turn keeps me from judging my efforts, one day at a time.
All material presented on Second Chance to Live is copyright and cannot be copied, reproduced, or distributed in any way without the express, written consent of Craig J. Phillips, MRC, BA
