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Could this Nightmare with Traumatic Brain Injury be Ending?

07 Feb

I was sure this nightmare with head injury was nearing the end. I guess my expectations were unrealistic. Being well-educated in the field of brain injury and rehabilitation did not prepare me for all that was to come in December 1991. I thought I was better shortly after brain injury but it got worse.

One could only believe with rest, sleep and time you would recover.  It seemed like the more rest I got the worse I was. My recovery was not slow because it was a worker’s compensation situation, as so many believed. That is really a very sick thought! It was slow as a result of undiagnosed conditions and complications with traumatic brain injury.  Unfortunately, through this experience I have learned that those injured while at work anywhere in the American system are frequently labeled and discriminated against. Bureau of Worker’s Compensation works well if you get better, but if you have complications you may be to blame.  Early interventions would help prevent further complications.  Is this a system to cover the employer?  Or a system to help the employee? It is difficult enough for individuals struggling with a traumatic brain injury of varying degrees from numerous types of injuries … and it seems like each one needs to struggle with all the causes as well as the healthcare, legal, insurance, employee systems as well.

Two weeks following the assault my family physician ordered a CAT scan of the head.  The results were “normal” at least that is what I was told.  Only to find out nearly a decade later that the quality of the CAT scan was so poor it should have been repeated immediately.  Who pays the price for this horrific misdiagnosis?  Yes, it was this family and not just this nurse! If this happens to you, get an expert in the area of Neurology or Brain Injury … it’s your life and you will pay the price! Even at that, a second, a third, or as many opinions as you need till you improve.  You know what you are going through and do not let anyone make you feel as though you do not know what you are talking about. If that happens move on.  You do know how you feel and you have better things to do in your life then running back and forth, expending your limited energy to physicians and various appointments with healthcare.

A100319_MAMC_TBI 1

Image by Joint Base Lewis McChord via Flickr

Now that the internet is handy, search on line for help.  Now many Americans, including an enormous amount of citizens with brain injuries do not have insurance, so check out all the resources on line. Even your most trusted physicians may not help. Hopefully, they will but I have been in a situation that the outcome was not positive.  When there is an error in judgement and you have a brain injury, you need someone to step up and advocate for you.  Your treatment may become deplorable, as mine did! Many will cover for their colleagues before they advocate for you as a patient.  And there are many medical errors.  It’s not about holding anyone accountable for their mistakes.  It’s all about getting better and being the best you can be.  This is not only a challenge with brain injury but also a challenge of your mind!

I struggled over the following weeks.  I tried to attend classes at Kent State University (graduate school) to complete the semester.  I went through the motions attending classes, but could barely accomplish assignments. It was a good thing I completed assignments before the end of October including a journal article School-Age Children’s Responses to Parents with Disabilities.  Rehabilitation Nursing.  Volume 19, Number 4 Jul/Aug 1994 203-6. I needed to have a co-author to review and submit my manuscript since I was not able to work on it after October 30, 1991.

How much is your brain worth?

By December I was certain things were getting better.  Maybe it was just wishful thinking or my “eternal optimist” attitude, thoughts and behaviors.  My friend and I were scheduled to take the Certification Exam for Rehabilitation Nursing. Obviously I was not able to study for the exam, but I had enough confidence to take the exam anyway.  That was the day I knew something was very wrong, but I was not sure what.  My friend was driving to the exam and we arrived early.  Thank goodness we did, because I gave her the wrong directions, wrong building, and the wrong city.  So what else could go wrong?  I felt horrible.  I knew exactly where we were supposed to be.  I could visualize the place and I do not even know where I came up with the directions.  All I know is we were at the wrong place.  In spite of being about 10 miles away from our proper destination, we made it in the final minute before the doors closed for testing. That is a good thing, as it was costly and the exam was given only yearly at that time.  No late admissions for testing was accepted and that’s routine for all nursing exams, not just for certifications.  Not in time, you don’t take the test!  Thank you my dear friend for speeding and getting us safe and in a timely fashion!

This was the very first attempt at testing or challenging myself since the injury weeks earlier.  The test questions were simple, but the situational questions were very difficult for me. I could not remember the first thing I read in paragraph format of test questions.  In addition, I noticed I was having double vision.  I was sitting there covering my eye and writing all over the test paper.

Young Cambodians doing an exam to be admitted ...

If testing is difficult at any point after injury and this is a change for you ... get another professional opinion!

I was doing whatever I could to get through this nursing exam and pass it!  I know every nurse is familiar with the complexity and level of difficulty of nursing exams and the testing environment.  I was not going to let anything from stopping me.  I signed up for the Certification before the injury and I had no reason to believe I would not use it in the future.

The nurse monitors were standing over me, as though I had a cheat sheet on the desk! I constantly looked at my watch and clock.  Time was another concept that seemed impossible.  I could not tell how much time had lapsed even looking at the clock.  Duration of time has been a problem ever since, hence I have clocks in every room and everywhere I go.  It’s just not as severe, or I have just compensated for it over time.

Within a week of taking the exam I had paperwork to be filled out for a worker’s compensation claim.  As time went by I was unable to fill out the paperwork.  Hence, I contacted legal assistance.  Gee, now I was a real troublemaker according to the nursing department at this Cleveland, Ohio rehabilitation health center!  Rumors spread quickly that I was going to sue the hospital.  I know that was never my intention.  It has not happened yet, and I’m twenty years post-injury.  So who was looking out for my welfare?  So, I would say they were wrong!  Who even thinks of suing or litigation when you plan on returning to work?  It just does not make any sense suing your employer just for the heck of it.  For that matter, I never did…but I should have.  I never realized the ramifications of a traumatic brain injury or my future (if I had any left?).  I barely existed for the next two decades.   All I needed was someone to help me with paperwork.  No one to this day has helped me from my place of employment.  Our worker’s compensation system in America is a joke!  I could hardly write a check, let alone to fill out an entire questionaire that was foreign at the very least.

FSA

You may need to get a patient advocate or legal assistance immediately following TBI.

I knew the lawyer I had contacted.  I had worked as a legal secretary/assistant bookkeeper for three years some time ago so I felt someone might be able to help out.  As far as I knew this was the first person to fill out any paperwork and expedite a simple worker’s compensation claim.

None of this would have been necessary if  management or anyone was assigned to help injured employees. This was not the first time I was assaulted at this rehabilitation center, but I did not miss any work after an  earlier assault.  I guess that is what made it okay.  I  had been employeed without loss of work due to work related- injury for over 20 years before this injury at work.  And after that another decade lapsed before anyone helped. I was approved for worker’s compensation in 2003 and not retroactive for pay either.  So that was 12 years without pay from Worker’s Compensation System.  To date, I believe I received about $7,000 for this   permanent partial disability of closed head injury, traumatic brain injury. Ridiculous!   So your brain is worth very little, according to this system.  Most of us cherish our brains, and there is no dollar value one can put on your brain or any body part, let alone your life and all the changes around you.

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4 responses to “Could this Nightmare with Traumatic Brain Injury be Ending?

  1. brokenbrilliant

    March 11, 2012 at 10:12 am

    Ah, yes, falling down the rabbit hole of TBI… It really can be surreal. And all the suspicion and distrust can reach levels of the absurd. Sometimes I’m amazed that any of us make it through in one piece. A lot of us don’t. The weird thing is, so many people have no clue and cannot fathom what it’s like to struggle at that level. And at the same time, they simply flat-out refuse to help.

    It would make sense to me, for people who have just experienced TBI, to team them up with folks who have long-term recovery behind them, to help them through those “simple” tasks that become insurmountable. Sometimes all we need is a little help, but without that, even the relatively minor issues — that could be helped with just a little non-judgmental assistance — turn into nightmares. And the problems just get worse.

    It’s like our society is primed to worsen the situation — a weird darwinian kind of drama that only hurts the whole culture.

    But if we could organize some sort of 1-to-1 support network for TBI survivors… how much might that help?

     
    • brain injury self rehabilitation (BISR)

      March 11, 2012 at 7:00 pm

      I totally agree. A 1-to-1 support network might be the only opportunity for new tbi survivors to the best recovery. The earlier the intervention the better. It might need to start with the family of a newly diagnosed TBI and a recovering TBI. The teaching a TBI survivor can do to help a family through this time can ultimately change the entire course of recovery even before the newly diagnosed TBI individual is aware of their surroundings. This type of intervention may far surpass what limits there are on America’s healthcare and insurance issues, healthcare professionals and what limits these professionals put on themselves.

       
    • jack

      October 2, 2013 at 3:38 pm

      Broken brilliant I run into you again and as always I find your posts to be helpful in order that I might endure. JF

       
      • brokenbrilliant

        October 9, 2013 at 6:25 am

        Hi Jack,

        I’m really glad to hear this is helping you. It helps me, for sure, and I hope it does the same for others.

        Have a great day and hang in there!

         

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