Sunday, 16 March 2014

Memory? Where for art thou memory?

I would take an educated guess that the most prevalent issue found among the brain injury community is short term memory deficits.  Furthermore, I would say that in fact it is not truly short term memory that is to blame but rather the short term recall of said memory.
Either or will suffice when it comes to this injury in as much as almost all brain injured survivors state this is an ongoing concern.
We all know of amnesia.  I suffered from it in my car accident in 1977. To this day I have no recall of the accident.  This is caused by the trauma that the brain shuts down to protect itself from dying from the shock being inflicted on the body at that moment in time.  Well thank God for built in computer systems that protect you from having a heart attack brought on from fear of what your eyes are seeing.  I survived, so it works well.  I would not recommend you try this at home because it also means that you probably got  some kind of rattling of the brain to which you were diagnosed with a concussion.
Just trust me that the body has many built in safeguards to protect you from dying.

My interest lies in the short term memory that we often allude to.  What is it? How does it impact on me overall?

I believe more people have suffered from this anomaly some time in their life.  Most likely in school.
Have you ever studied for an exam, received a question that for the life of you stumped you, yet you were certain you knew the answer.  When you left the exam, suddenly the answer popped into your head, like it was there all along.
This is the short term recall memory issue I am referring to.  While you were under stress, the answer was lost in a sea of confusion.
This is the constant state a brain injured finds himself or herself in on a daily basis.

It adds to frustration, anxiety, depression, anger and may even see the person withdraw from society because they no longer feel they can contribute in a meaningful way to something as simple as a conversation.  It is hard to fathom a conversation where you stutter as you try to recall a pertinent piece of information that contributes to the general flow therefore you find yourself pulling back in hopes you won't be found out.
It in fact is the opposite to coming out of the closet.  In fact you withdraw back into it until you disappear.

The answer lies in who you surround yourself with in the arena of friendships.  You may lose some friends but if you are open to well meaning, non-judgmental types then join a brain injury group.  I often sound off in my brain injury group online and no one cast fault, blame or calls me down.  They know exactly where I am coming from.  They accept me for my struggles because chances are they have similar horror stories.  No one can appreciate or understand the plight of a brain injured unless they too are brain injured.  It a private club that you do not want anyone to join but are glad when they do because it means you are not alone.

I am not going to suggest solutions because what works for one may not work for another and that is the problem with brain injury compared to all other disabilities.  there is no one fits all cure to the problem and each case is unique and unto its own.

What I can say is that if you acknowledge memory as being an issue then it is the single most concern you will have to contend with long term.  Deal with the memory and see the anxiety and anger subside along with all the other traits brought on by it.

It means accepting new limitations.  Can you structure your life where the memory is less intrusive?

I place my keys in my hat along with my wallet, my lighter and smokes.  I always wear my hat so if all my belongings are in it including my cell phone then I am good to go.  I will not get into heavy repairs to the house where a lot of tools are required.  If I put the wrench down and go and get a screwdriver I will forget where I lay the the wrench and frustration results.
You know what your tolerance is.  work within that construct and you will succeed!

Defining "NORMAL"

Eureka! Finally someone is about to define "normal".

I was born in 1959, the book of the month was a story of Dick and Jane and a dog named spot.  The story was all about an idyllic setting with the one car, the white picket fence and if you were not a part of this click then you were abnormal.

Here is the true definition of normal:  If you have an alcoholic in your family, have a child molester in or around your family, have a child that goes off the beaten track and embarrasses the hell out of you, have at least one divorce under your belt, know of or are a wife or child abuser, have dealt with drug addiction, smoke or have smoked, are broke or have been broke, had a family member die from cancer, had broken bones, been in a car accident, gotten measles, mumps, chicken pox, have a gay friend or relative, been fired from a job or been downsized out of your job, had a concussion, scraped a knee, received stitches, lost a tooth, have stolen something, not returned something, spoken behind someone's back have a relative that no one likes, have a friend or loved one in jail, know of or have had a teenage pregnancy, then by God you are almost NORMAL!

Yes, this is what normal looks like to me so why in the hell would you want your brain injured loved one to become this?

Does normal makes sense to you now?

Then why waste time pursuing it?

It forces you into the wrong direction!   Backwards when in fact you want to go forward.

You do yourself and you brain injury survivor a great deal of harm if in fact you yearn for what was.  The past is the past and the future is yet to be defined and it is what you do with the time at hand that will determine a favorable or unfavorable outcome in the future.

It is up to you to take oneself from where you are to where you want to be and attitude is what will get you to your final outcome.  Have a bad attitude?  Get a bad result.  Have a reasonably positive attitude and the outcome will be what you expected it to be, a reasonably positive one.
If you set your expectations too high then the fall from not achieving them will be as equally low.  If you lower your expectations and keep them positive then if you fail to achieve the fall from grace will be less.
Take baby steps back from the brain injury and do not expect the world or thinking the path to Normal is forward. Normal is anything other than where you truly want to be.  You want to be better than what you are right now.  It may be a departure from the path you were previously on and I can share in your grieving process, but you now have a new path with new challenges and new goals.  Take them on with pride and maybe in 10 or 20 years you too will look back on the fallacy of what you thought was normal and laugh into its face and declare, I am so over who I was and a better person for it!

Things You Should Not Say or Expect

Carrying on from my previous Blog that these behaviors are "NOT MY FAULT",  I find a sour taste in my mouth when:

1) All the healing from the brain injury will be completed within a 2 year window.

I had a profound awareness after 40 years of living with a brain injury.  There is always hope.

2) It's all in your head so get over it.

Ouch!  I realize its all in my head so what is your point?  Lets see, my brain is in my head? My brain is broken irreparably yet somehow you want me to have a spontaneous remission like what?   Cancer?  Start Praying!

3) You're forgetting things is an excuse to avoid the truth.

Yeah, like I enjoy being told how incompetent and irresponsible I am at age 54.  Give your head a shake!
I love the fact my entire teenage and adult life, I have been misunderstood in this manner.  I like losing wallets. Its a form of therapy to me to give to the less fortunate in this world, my meager earnings, my ID, my credit cards.  I enjoy trying to get my ID back when I have none.  To get my Birth Certificate, I need ID.  To get my Drivers licence, I need ID.  To get my social insurance number I get it.....I need ID!

I muse that I have been practicing for old age since I was a teen but how cruel this brain injury has been to me.  It cheated me of my relationship with my parents in a way that mattered.  Do you think they would have been so hard on their incompetent son if they fully understood the depth to which this brain injury would impact upon on me?  When I was retested in 1994, my dad wept when, for the first time, he understood that I truly was disabled.  It wasn't in my head after all.

4) He or she is almost back to normal so lets not make such a big deal out of that nagging behavior.

The same can be said for all types of emotions caused by the brain injury.  Depression, Anger, inappropriate behavior, that quite often we turn a blind eye to because at least we got him or her back almost fully in tact.  For the brain injured, one cannot downplay any issue like it does not really exist.  The issue will not simply go away on its own.  If he/she displays anger then one must address the cause and teach the brain injured what is socially acceptable all over again.  If you don't then all hell will break out!  On top of brain injured, he may become a pariah to society because he beat his wife, child or pet!
Now pile that on top of an existing brain injury and the survivor is in for an even greater challenge.

5) The doctor said "So."

 So what?
 A doctor said it was my spleen?  Good thing I didn't have it removed because its been functioning quite fine thank you, for the past 36 years.
Another deemed my passing out as poor iron blood.
One has to understand the source.
A General Practitioner has a degree in medicine.  They are taught to diagnose a myriad of conditions but up until recently very little time is spent on brain injury beyond the text book terms of being able to identify the signs and symptoms.  Some doctors are great in their ability while others no so much.

Neurosurgeons have a greater understanding of the structure of the brain because they specialize in it and have operated on many a brain over the years of practice.  My neurosurgeon was the best in his field.  You could not of ask for and have received a better outcome to what was a person with all the odds stacked against him.  I am so grateful as I have had 36 years of bonus life. However, Dr. Cameron is a Neurosurgeon and does not specialize in the rehabilitation of said brain therefore he does not know nor is he expected to know what to do or where to go long term when it comes to post surgery issues that will show up.

A Neurologist specializes in diagnosis of brain injuries and make referrals to Neurosurgeons or Oncologists or those who deal with other brain anomalies.

A Neuropsychologist deals with identifying behaviors that may present themselves after a brain injury.

A Therapist may or may not be trained in brain injury but can help in the healing process.

I have over simplified the above roles and at no time do I downplay their significance in their perspective fields but they are not GODS!

It is only in the past decade or so, that emphasis has been placed on brain injury by the media because some pro athletes have received oodles of money when they learned the dirty secret that actuaries feared the sport of football and hockey were in for some major law suits by turning a blind eye to the truth of long term affects of concussion among its players.

My parents were the type that took the doctor at his God-like word to the detriment of me.

It is so imperative that you get to the right doctor, the right diagnosis and the right outcome if you want the best for your loved one.  Get referrals and join help groups.  Network, Network, Network.

6) You are just lazy.  

This is the lament I often hear from relatives.
I agree.
I began to need more sleep at age 18.  I was over the hill at that age, so sue me.
I suffered a serious attack on my very essence had my brain operated upon and now I need more sleep!  I wonder why?  It takes 2 to 3 times the brain effort to function close to that of a normal brain!  I came to this conclusion when it took me 4 hours to complete a 1 hour math exam and got that prestigious "A".  Simple math shows my brain has slowed but yet I can still get good results.  It just takes me longer to get there.  After that effort I am fried.  If ever you have smoked a joint and realized how out-to-lunch you were after then consider the possibility that I feel that way almost everyday without the need for a drug to place me in that state of mind.   I will continue to need copious amounts of sleep everyday for the rest of my life!

7) When will he/she be "NORMAL?"

What in the hell is normal?  Is there a scale of normality somewhere? Did you get your source from the book about Dick, Jane and a dog named spot?  Hellooooooo??????  Is anybody in there?
What part of permanently brain injured did you not get?  Brain Injury is Forever kind of like, "They lived happily, forever after!"
The truth about any brain injury is that it will last, hold onto your senses, I don't believe I am going to say this,

                                 F   O   R   E   V   E   R !

8) Its a mild brain injury.....

NO ITS NOT!!!!!!!!!   
Any trauma to said, the most important organ of the body, the very essence of self, all body functions require it, is serious!  
This is not some kind of brain injury competition where we vie for supremacy in the world of my brain injury is more severe than yours, therefore I win!
They should strike Mild or Moderate brain injury from the medical books.  
Common sense dictates that a person who is brain dead due to severe trauma is worse off than any other form of brain injury.  O.K. a person who dies from a brain trauma is the winner!  My mistake, how dare I?

Does that make you feel better? 
 There are degrees of brain trauma and some more complex than others, however they all have one thing in common, they are permanent and though we may see improvements, they will not fully recover and there will be issues that need to be explored.  It may take, as I stated above, forever to heal from a brain trauma.  Now if that statement makes no sense to you then welcome to my world.

9) How long is forever?

There is no stupid question.  It is so hard for us to get our minds around the word forever. It is what you do with that information that is going to make a world of good come from the trauma of brain injury. There is no time limit.  There are workarounds that may not eliminate the said issue however it may reduce its affects somewhat to make the brain injured less encumbered. Does a wheelchair replace legs?  Of course not but it does give the person wheelchair bound his or her mobility and possibly independence. 

10) It's Not My Fault

There is a fine line between faking it to avoid doing it to a favorable outcome.  It is an excuse if he or she refuses to try to overcome an anger issue and refuses to take appropriate steps in mitigating the issue.  It is not an excuse to be angry because you continually forget.  This can bring about anger but if you have taken several anger management courses to help offset the memory issue then forgetting is not an excuse and the anger is.
I learned that it was better to avoid triggers.  I don't attempt repairs, I delegate them to others.  It may cost me some money but I never get mad and my home is much calmer as a result.  I can change a light bulb but when it comes to major repairs, like replacing a faucet, I find I lose my tools and then the anxiety increases.  Isn't that why they invented plumbers for in the first place?
Yes there are excuses and if your loved one is avoiding a task then it is an excuse but one must be cognitive of the underlying message the brain injured may be trying to convey.  Is it the anger that is the issue or is it the loss of memory?  Anger is usually the outcome of some form of anxiety.  If you lock your keys in your car, you not only face an issue of anger at oneself but are embarrassed to call upon someone to open the car.  Magnify that 10 or 20 times in a day or for that matter in an hour and then you have a glimpse into the day and a life of a brain injured person.
There is no excuse for violence but it is incumbent on you to identify the cause and have it dealt with promptly.
You the caregiver, have your work cut out for you.  
The brain injured has his or her work cut out for them.

When a person does something inappropriate in the realm of brain injury remember this

It is not their fault.  It is the cause of the brain injury.  If they the brain injured did not behave that way before the injury then why would you think it was anything but the cause of the brain injury.

You need not accept inappropriate behavior from the brain injured but you must expect it from time to time.  

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.