Sunday, 16 March 2014

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.  

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