Saturday, 15 March 2014

An Epiphany Into Muddy Waters

          I apologize if it has been a while since my last entry, but my 12 hour days and having only Wednesday and Sunday off, I find myself either sleeping or catching up on more pressing matters.
          I have spoken at length to the fact that Brain Injury of any kind is probably the most insidious, misunderstood and maligned disability out there.
          Please, I do not wish to argue with someone who is paralyzed or has lost a limb.  I should have said that truly, any disability that is life altering is the most insidious form of disability.
          I can attest to the fact a simple fracture of my pinky, has caused me some trouble and it is life altering.  My little finger will not close completely and is forever bent.  Now being over simplistic, when I grab a handful of peanuts in my right hand which sports the bent little finger, the peanuts fall out of my grip and I leave a trail behind me that any squirrel would be envious of.   Who knew the little finger served a purpose until it was rendered incapacitated.
          Yes, there are many challenges with many forms of disability.  My argument is that as we heal and adjust from any other form of disability the same cannot be said for that of a brain injury.
          You see, when you have any other disability, you have the benefit of a healthy unencumbered brain to help you adapt to your new environment and after some trials and tribulations, the brain adjusts for you and compensates.
          What happens if the very computer you depend upon stops working fully in one or two functions?  What if as quick as I type this word it is lost because the (RAM ) Random Access Memory or short term memory of the computer is no long available?
           What happens if it functions one time and then not another?
            What happens if it fails with no regularity with no set pattern?
            Its a case of muddy waters and believe me, this is just the tip of the iceberg when it comes to the life and times of a brain injured person.
            I believe I have even mentioned this in past blogs and one would be so fortunate if all that was wrong was one simple malfunction of the brain.  When the brain is traumatized it usually, let me rephrase that, never is only one area of the brain affected, let alone only one function.  A concussion is the brain bouncing off of the interior of the skull and then swishing back and bouncing off the opposite side of the Skull.  This would then indicate that multiple issues will occur.
            Even a an ABI (Acquired Brain Injury), results in multiple regions of the brain.  Yes, I had a stroke better known as an AVM (Artery Vein Malformation) that was localized to my left temporal region of my brain.  Now the arteries ruptured, while some were clipped off and blood clots had formed placing pressure on otherwise healthy brain tissue.  One could say that being localized means only one function would be damaged, however, the arteries clipped off or that had ruptured, carried life giving oxygen to other regions of the brain meaning in short that multiple functions were adversely affected.  Like a computer with tons of code, processors and wires leading to other regions, many functions may be at risk of losing ability to process information.
           I am not wanting to get into detail, in fact it is impossible to get into detail and that is what makes brain injury so insidious.  You see, the experts know the outcome of loss of limb or paralysis and can treat everyone the same.  It is that one fits all treatment that alludes that of a brain injured person.
           I was told to take notes to help me remember.
           Boy, I was prolific in my writings, so much I decided to write a blog.
           Did my memory improve?
           Not in the slightest.
I could never remember to refer back to my notes in time to remember the event I was to be reminded of.

Now tell a person who has lost a leg that they will need to remember their crutches, prosthesis or wheel chair and I bet you that you need only tell them once.
          Again I am not making fun nor do I take it lightly that recovering from any debilitating injury is any less life altering.  I get it.  You lose an arm, you cannot tie your shoes or button up your shirt as readily.  Your life as you know it has been forever altered.  Your dream of being a major league pitcher, a competitive  swimmer, a typist, a logger have all gone up in smoke.  The difference is that you can by virtue of a fully functioning brain, adjust, make a new career choice, and become a contributing member of society.
         When it is the brain, the reliability is lost and the brain injured often and most unfortunately, keeps his/her healthy former self in the rear view mirror, in hopes to one day meet or exceed his or her former self.
         It is the biggest trap we set for ourselves. I know that for the past 36 years, I have been in awe of my former self and deeply envious of him and so much so I failed to realize that I eclipsed him so many years ago.  The specter of that young man who could memorize lines in a play at a glance had so dwarfed me that I had not realized that at 14, I was not a father, a husband, a grandfather, a first aid attendant in an industrial setting, had not owned several businesses, yet somehow he was better than I, all for the fact he could remember.
     I belong to a couple of online brain injury groups and I see the same concern and the same questions and it saddens me that even with the passage of time, many if not the majority, use their former self as a point of reference in the process of healing.

    You have to assess where you are and then move forward from there.  There is no guarantee of fully recovering.  I am not saying, accept your limitations.  Contrary to that.  The challenge to you the brain injured is, O.K., this is what you have; Now, what are you going to do to mitigate it so that it is less of an issue to you?
Take a picture of yourself today, not the day before you suffered your TBI and see where you can take that new you to, in the realm of being a brain injury survivor.

        Now I stated in the title that I had an Epiphany and it came quite by accident by a new friend and truly it was like a weight came off of my shoulders.
        We as humans are conditioned at an early age to be prompt to appointments and not to keep people waiting.  We are also asked to pick up after ourselves, close doors, cupboards, run errands for our significant others and for the most part society tends to follow that rule.  Certainly there are exceptions to all rules and some people were born lazy, and are inconsiderate of which none of my bloggers are.
        You see, I am for the most part, one of those people who like to arrive a few minutes early however when it comes to cleaning up after myself, my wife might wish to differ on my abilities.
       When I prepare my lunch, I place the soup on the stove and clean up as I go but my brain does not keep in sync with what my body is doing.  So I open the cupboard and grab the pan to place the soup in and that reminds me,  that I must also go grab a bowl to place the soup in, and I'll need the butter out of the fridge and place that by the toaster. Whilst I am at it, before I forget, I will need the bread placed in the toaster, and a cup of coffee needs to be prepped.   Now as the coffee brews, the soup is heating I put the toast on. The soup is hot and I pour it into the bowl and turn quickly to place pan in sink and add water to let it soak.  My coffee is ready so I add sugar and whitener as the toast pops.  I butter the toast and place the knife in the sink, stir my coffee placing the spoon in the sink too.
Done!  Now the cupboard door to where the pan came from is open along with the one the cup came from. Same for the cupboard where the soup bowl was retrieved. The stove is still on and I'm sitting down to a great meal that took all of a few minutes to conjure up.
My brain took control.  With each new thought, I feared forgetting the next step so as quick as I thought it I got it and in my panic to complete all tasks I forgot so many others.
       There is no AHA moment here but as I explained my memory issue to my friend, she said something that forever changed the way I look at myself.
        Due to conditioning, I would forever beat myself up for forgetting to return a call, keep an appointment, to take out the garbage when asked and I cannot tell you how many times I have called myself an incompetent.  Over 40 years since the arteries began to leak in my brain, I was called a malingerer by my doctor, lazy by my parents and teachers, berated by co-workers and even out of frustration my wife has sounded off on me.
       This friend stated 4 simple words that turned my world and how I view it, upside down.
                                                    "IT'S NOT YOUR FAULT"

Here I am 54, my doctor back in 1977, said the blood clots were at least 4 years old meaning my brain injury began at 14.  I have lived 40 years with this brain injury and how this has woven itself into my psyche.
I have been called everything under the sun and even though I know deep down, the cause is my brain injury, I blame myself because that is what a responsible adult does.  He accepts responsibility for his or her incompetence like a good boy.  I can't tell you how many times I have raked myself over the coal for my failures.
You see, we as brain injured get slammed by well meaning, misinformed friends, doctors and relatives that you are using your brain injury as an excuse to get out of something.  For fear of it becoming a crutch we the brain injured deny its very existence and blame ourselves instead.
Can you spell LOW SELF ESTEEM?

Wow what an Epiphany!    Its not my fault at all!  Its my brain injury that is at fault!

You see, if you think for a moment, that I would intentionally miss a physio appointment, my doctor appointment, fail as an adult, or as a child growing up to take the garbage out, fail to turn off  the stove element, misplace 8 wallets at great cost to me? Then you are the one who has a brain anomaly and I am sorry for your lack of insight and compassion for those of us that truly are brain injured.

If you are a caregiver, if you are a professional, doctor, therapist, a relative or friend then yes it is the fault of the brain injury and not that of the Brain Injured so cut us some slack because this confounded brain injury is not going anywhere soon and might just be forever like it is with me.




No comments:

Post a Comment