Monday, 14 July 2014

Rehab DIY

I may get a little flustered at times.  I may come off as inconsiderate.  I may sound angry.
One could point to what else, my brain injury?
When it suits you, I have a brain injury and not just an opinion.
If I suggest my behavior is in  direct relationship to the loss of brain wiring, you are doubtful.
Your expertise is that you have lived as long as I without a TBI, therefore you can state inequitably that my short term memory loss is not that bad.
My inability to hold a conversion or get a joke is nothing more than an inconvenience that I should get over it.
My lack of compassion for the passing of a loved one means I am a psychopath.
When I cry at another person crying, I am over sensitive.
When I forget a name, I am rude.
When I forget an appointment, I am irresponsible.
When I apply for a Job that requires an aptitude test that is timed, do I state I have a learning problem.  Do I lie and say I am dyslexic?  Do I say I have a permanent disability?
Will I get hired if I do?
Yeah, I have a right to be angry.  I am high functioning disabled however the key word here is disabled and that is my dilemma that has haunted me for 40 years.
Help?  I had none in 1977.
None in any years since even with 2 neuropsych tests in 78 and 1994.
Its ironic that the tester of the neuropsych test knew I was disabled but could not refer me to someone who might help.
My rehab was simple. DIY.

Ignorance! Alive and Well in 2014

As a member of a couple of brain injury groups on the internet, I find the all too prevalent misunderstanding surrounding TBI/ABI, still persists.  I recently read a story of a woman forced to move back with her senior citizen mother who, by grace of her age, doesn't grasp the depth to her daughter's brain injury.
Now this I can fully appreciate, and would not expect a senior citizen to fully understand brain injury especially when in her days, "One flew over the Cuckoo's nest" mentality and Lobotomy were the only recourse to mental abnormalities; But come on, this is the 21st century, isn't it?
Her struggle isn't so much with her mom but with those who by grace of their position should know better; Her church, pastor, and congregation.
This ignorance towards the most vulnerable of our society, the brain injured needs a voice and the church and the medical community need to put their mouths where their experience should be.
I am not surprised, however, there is no excuse for those in positions to help educate society with regards to the struggles of brain injury.
I was given a golden handshake in 1977 when it came to brain injury.  My neuropsych test stated I was disabled.  I scored in the 7 percentile of the population had my memory ability. In other words I went from 4 point 0 down to an E average.
I have, over the past 40 years, adjusted for my short term deficit, but the score remains the same.
Our struggle is made more difficult with statements of, "We all forget, so get on with it" or "You're not that disabled." Or"At least you can walk."
Yes, I have heard all of this.  I cannot emphasize how crushing this is to a brain injured whose struggle back may be a life long journey.  Brain injury is an assault on self.  Brain injury is an assault on the family.  Brain injury is an assault on friendships.
Your help and understanding can and will make our journey back easier.  Please take the time to become informed.  You will not find it in a book but rather from a brain injury support group online so join, immerse and have a change of mind.

Friday, 27 June 2014


When did you learn about gravity?
If like me you would state in school.
In fact you didn't.
You learned it when you first tried to roll over or tried to crawl or walk and fell over.
If I asked you to climb atop of your 2 story house and jump off, chances are you would respond, "You first!."
The reason is you need no scientific proof of velocity and the sudden stop at the end to convince you, "This is gonna hurt!"

If we go out fishing and catch a fish, remove the hook and release the fish back into the water, one could assume that the fish saw its world from a different point of view.  It also saw its limitations and how it was bound to its watery confines.

Welcome to the world of the brain injured.  
 If you are a caregiver for the first time.
If you are a survivor for the first time.
Each of you are like that fish.  Your perspective has been changed.  The world for your friends carries on but yours will never be the same.
The point of view of friends and family may not coincide with yours.  They are not wrong, they just haven't been pulled out of their world and viewed it through your eyes.  Chances are they will never get it.  Why should they?  They too, have a comfort zone, have time constraints, and all the daily constraints  that differs from both of you.
They are not wrong if they leave you behind.
In essence both you, caregiver and survivor have taken a different path too.
Yes, you may miss the friendship or be angry for their lack of compassion but there are truths about brain injury you need to appreciate like the truth about gravity that will need to be accepted if  you desire a less traumatic path to acceptance.
Friends will abandon you.  Regardless of brain injury, friends will come and go.
Family may abandon you.
Its hard to get around the word permanent, the word disability and forever.  Put them into one sentence, "Your loved one has suffered a brain injury and will be permanently disabled and the affects are most likely forever.
You are and will yearn for who you once were.
You will gauge your progress on who you once was clinging to any inkling that he is resembling his/herself.
The more you chase the past, the more anxious and frustrated you will become.
Gauge the process from the date of the injury and move forward from there celebrating any  new progress made!
You are like a new child, a new employee on this path for the first time.  Do you berate a child for failing in his/her first dozen attempts or give them encouragement?
So, caregivers, you need patience and be positive.
Brain injured?  Give yourself some latitude to screw up.  Like gravity, you will stumble and fall
You will master your new world minimizing the affects of having a broken  brain and have a new perspective that those who failed to follow you in the progress of healing, are most likely doomed to return to the bonds of earth and repeat the lesson of compassion.

Tuesday, 24 June 2014

It Just Happened! What do I do?

This is the time to act.  You see insurance companies act post haste, to minimize the cost of damages.  So should you.
Regardless of whether this is a TBI or an ABI.  Whether insurance is availble or not, you do not have time to begin either the healing process or the legal process.

If you have either insurance or injury occurred at work, if a representative offers you a settlement, politely say, I must speak with my attorney first. (Of course "I" being the spouse or caregiver)
Lawyers better be well versed in Brain Injury.  This will be a long process.
Long term?  Possibly for the rest of his/her life where the file needs to remain open.
We may hope for a complete recovery, but we need temperance, and plan for something in between.
Things to consider long term.  Income loss, siezures, scar tissue building up on the brain over the years.
Yes, you may be fortunate like me, no scar tissue build up, yet.  No siezures but one can never rule them out.
Get a goooooood lawyer who ensures you file is ongoing.

Now if you have no coverage, had a stroke or tumor then you need to turn to help groups immediately.  They can direct you to government or charities that may offer assistance, like walkers, wheel chairs, wheel chair ramps, medical beds, hoists to aid in moving the most serious.
You will also need to know what rehabilitation is for your loved one.
The proper neuropsychology testing.
The newest treatments like Hyperbaric Oxygen Therapy (hbot).
The quicker the rehab and legal process begins the better the outcome for both you, your marriage, and or family.

Hope you never need me but I am glad to be of some help if you do.

Saturday, 21 June 2014

A Question Of Faith

In my last blog, I mentioned faith or spiritualism as a means for healing.  Now many require no convincing of the power of meditation or divine intervention.
Some athiests may scoff at the idea that a mystical being has anything to do with the healing process and it's all in your mind.
I agree with both!
Those who have a faith whether they believe it or not are using an icon, to really still the mind to access the subconscios mind which I feel is connected to a greater power I refer to as the "Collective Consciousness" that some refer to as God.
Whether you believe or do not believe is neither up to me or anyone else however, if you are worldly, meaning tolerant and respectful of all beliefs or non-beliefs then I pose a simple question.
What harm is it in believing in spiritualism as part of the healing regimine?
Let me put it to you this way.  If we believe that Global Warming is true but the nay sayers hijack the argument and say it is not so and we destroy this planet then we all lose.  If we support the argument that global warming is real and are proactive in cleaning the environment, what do we lose?
Nothing.  In fact we gain a cleaner environment.

So if you allow for prayer in any form, whether from a specific faith or from someone who has faith in a healing rock, a pool of water, or an annointed person, and when you die there is no afterlife, what have you lost?  Conversely if you deny the possibility of life after and there truely is then you may have denied yourself the option to healing yourself or a loved one by way of prayer.

You merely have to still the mind at night and simply ask the power to be to please bring balance, harmony, health, success and love to the named injured person.
Positive reaffirmation.
What have you got to lose?
To me it's a win,win kind of situation similar to those who would rather destroy the environment instead of leaving it cleaner than it was when you got it.

Wednesday, 18 June 2014

The Spirit Within

I may not be the best person to speak about spiritualism for obvious reasons, like I don't follow a religion, have not read the bible, have for the most part of my life been an agnostic, yet I am going to share my story and hopefully you won't be offended or think that I am a lost cause.
It has taken me 40 years to come to the conclusion that in fact the power of prayer may work.  I say may for those who are like me a little cautious.  You see I was mad at my God, for giving me this terrible challenge.  I could understand it if in fact I was the cause of the aneurysms but they were formed before I was born.
Now the reason for writing this is to help those who are more faithful than I and maybe open the minds of those still wondering.

As I told you, this all began at 14 when aneurysms began to rupture.  In actual fact without going into great detail I ask you to simply follow my thought patterns and determine whether it was luck of the draw or a greater force was involved starting before even I was born?
A simple thought for the non believers is simply this....We have two minds.  The Conscious mind.  This is what governs our conscious decisions.  To walk, run, laugh, cry, wear a helmet or not, get behind the wheel, call a cab.  Everything we do, right or wrong is governed by our conscious mind.
The second mind is the subconscious mind.  This works 24/7, regulating your heart, managing your temperature, blood pressure, growing your hair and finger nails.  It fights infection and it does what no doctor or psychologist can do and that is to heal you.  Yes, a doctor may set the broken leg, which removes  the block so that your body can begin the process of healing.   The same with the psychologist.  He guides you from the darkness so that your mind can begin to heal itself.  All healers, whether Christ, Mohamed, Buddha and dentists, physiotherapists, chiropractors and the like are facilitators for the process of your subconscious mind to promote its own healing whether it is physical, mental or spiritual.
Now I am of the mind that the planet is much older than 6000 years, that the big gang occurred but the question still remains, who created the big bang?
Along comes a scientist and The "Theory Of Everything", by Robert Lanza, who merges the realm of science and Biology which allows for both science and spiritualism to exist.
Now I am not going to go further in explaining the theory of relativity, the big bang, the reason for us being here but in that same thought I will explain how I think that possibly the hand of God played a role in my life.

Dr. Heffernan told my mom not to give birth to me until July 21, 1959 as he was on vacation until then.  I decided that I like the number 19 and at 6 am, on the 19th, I was born.
Dr. Sinclair was the attending doctor and as fate would have it, I chose to see him over Dr. Heffernan in the years that followed.
I began passing out in or around age 13-14.  Dr. Sinclair prescribed something for poor iron blood.  It had little or no affect as the passing out continued.  Wishing to avoid the cod liver mixture I simply stopped complaining about my passing out frequencies.
My grades began to plummet along with my concentration and my scholastic abilities were a swiss cheese of some grade 9, 10, 11 by the time I finally dropped out.
My dad decided to send me 500 mile north to Vanderhoof, B.C. hoping that working for our farmer friend would convince me to go back to school and get a good education.
Late July, I became nauseous from what I would later learn was an aneurysm rupturing.  No pain, just disorientation.  Still concerned I went to the doctor and he stated it was my spleen.
I though it was my head but who was I to question the doctor?
A week later I have the car accident and get a free trip with my broken leg back to Victoria.
I go to the emergency, see Dr. Mackie who is in the process of taking over doctor Sinclair's practice.
He discovers my broken arm missed by the hospital in Vanderhoof.
October 31, I have the major aneurysm rupture.
Dr. Mackie refers me to Doctor Cameron who saves my life.

Lets sum it up.  For some unknown reason, I get Doctor Sinclair as my doctor before I am born and he is to retire and Dr. Mackie is to take over his practice on or around 1977.  The Doctor in Vanderhoof 's misdiagnosis of my rupturing aneurysm.  To get to Victoria something grand has to take place.  Let's see, God throws a pick-up into my path and I break my leg.  They miss my broken arm, another miracle, because Dr. Mackie remembers that and decides I need a brain scan, an X-Ray and an EEG.
The tests prove I have 6 weeks to live.  To me, too many coincidences along with the timing leave me wondering.
I could not deny the many faiths that prayed for me to say that the power of prayer did not have an impact upon my recovery.  I could tell you that these farming friends used to reside in Sidney which was outside of Victoria and moved to Vanderhoof in 1974.
The fact remains whether it is fluke luck or divine intervention, I personally lean towards the latter.  I believe our bodies are not perfect but the soul within is.  I believe we are divinely perfect and that our connection to heaven or the divine consciousness is through our subconscious mind.  If you still your mind and feed your subconscious mind with healing positive thoughts you will consciously see the healing manifest itself in you.
I may not know what is in store for me.  It may be this blog.  It may be to give you hope,  It may be to say a loved one is too broken and it is in God's hands, or may be a loved one passed already and you need to know all was done by you for him or her.  Whatever the reason I hope this blog continues to help you in your healing or acceptance of the loss of self one has or is still facing.

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.