Wednesday, 2 May 2012

The Dance

I have touched on this subject a couple of times through this blog and there really is no way of preparing you for brain injury.  It is the most insidious, most misunderstood and probably most maligned form of disability mankind has ever known.  I cannot emphasize this enough.  Brain injury will turn your world upside down, alter the roles of every member of the family and tax you completely of all your energy in a single heartbeat.  There are going to be great gains followed by as many regressions, many plateaus and then again more leaps ahead.  Chances are this will be an indefinite dance that you the caregiver and the brain injured will perform for the rest of your life.
            The dance like the roles within the house will see the lead change and it may begin to resemble the following listed below.
            If you are a wife of a brain injured, your role will become the bread winner, the mother of a man that was once an equal and in the same breath you will be the one who holds the rest of the family together.  The children will be expected to become major players in this unfolding crisis.  If they are young adults, teenaged and up, they will have to take on the father role for the younger siblings.  They will have to accept responsibility that once was reserved for their dad.  The household maintenance and yard work may have to become their domain.  They may have to watch father while mom works and remind him of his duties.
            If it is the opposite way around, the husband will become the mom and dad while accepting the role of nurturer of the children and wife.  If she took care of the laundry, cooking and shopping that role will become the husband’s while the girls in the house will look for guidance from the eldest teen girl in the house.
            If it is a child who becomes brain injured, the mother will become the caregiver in most cases and may neglect out of necessity rather than by design, the nurturing of the other siblings.  The husband may become alienated as attention of the wife once reserved for him shifts to the brain injured child.
            If it is your adult child and you are retired, you might find him/her, the brain injured child returning home for help.
            Whatever the circumstance the one thing is for certain, you are in for a rough ride and every responsibility the independent loved once displayed has vanished and you unfortunately have to take that all on.  The name of this game is instant dependency on behalf of the brain injured.
            Brain injury produces an injury of the self.  Brain injury produces an injury to the “Who” in the term Who we are.  The one truth that remains is that “I am” however “I am” is devoid of the ego which is how we defined ourselves in name, body and personality.  That is the part that has become altered and may even be unrecognizable.  I know I am getting into some eastern psychology and I am not an expert on the subject. It is very difficult to describe the impact a brain injury has as opposed to a physical impairment.  A physical impairment affects mobility and may for a time impact on the personality until the injury or disability is accepted.  You are readily accepted as having a disability because it is visible.  One cannot avoid noticing a person with one arm or one leg.  My disability is covered by hair.  I have achieved to 100 percent of my disability but when I say I have difficulty in remembering, everyone states, “That’s ok so do I.”  If I was missing a leg and explained to a person I can’t walk without a prosthesis one would accept that at face value and a physically disabled person would not hear someone say “Well sometimes I can’t walk either.”
If I had a problem controlling my sex drive I would be shunned by society.  If I had an inability to edit my speech and swore in front of children, I would be shunned.  If I had an inability to change my train of thought and repeated my story over and over I would be shunned by society.  If I had an inability to comprehend what was being said or forgot time and time again I would be accused of being rude, lazy, incompetent and even stupid.
No one would accept me as I am and that lack of understanding over time creates even more issues for the brain injured to overcome.  Many well meaning friends abandon the brain injured and call him/her a malingerer because there is a great misunderstanding with regards to how the brain injury and the recovery process affects the individual suffering from it.  In most injuries the healing process is visible therefore the progress is easy to see and furthermore it can be gauged.  A fracture takes 4 to 8 weeks depending upon the severity of the fracture.  Eventually the person sheds the cast and becomes fully mobile.  In brain injury the opposite is true.  There are tell tale signs of recovery however some of the injury is similar in nature to an amputation and function is impossible to return.  If I am right handed and lose my arm, I will never write with that hand again.  Lets us not argue that with prosthesis we can.  Physically if the arm is gone many functions we take for granted also vanish.  Tying a shoe lace, cutting ones meat, throwing a ball and the list goes on.  The same can be said for a brain injury.  Some functions come back but some are lost for all time.  Some of the functions are overcome with prosthesis, such as a note pad or electronic memo pad while other details may never be completely compensated for.
This misunderstanding is paramount in the life of a brain injured because once the visible signs disappear and people start comparing the brain injured to physical recovery times the brain injured will be chastised for not achieving.  An example of this is the issue I have mentioned before where my wife has asked me to retrieve something from our car as I am leaving the house and I have agreed.  By the time I get to the car it is forgotten and she comes running out as I start to drive away.  One would say that I am lazy and was merely ignoring my wife’s request.  Some may accuse me of being incompetent.  Some may say they have teenaged kids that act like this all of the time and all I need to do is practice on my concentration. Maybe I’m a malingerer and using this as an act to avoid responsibility.  The difference is that I am 52 at the time of writing this blog.  The injury occurred 35 years ago and either I’m the best actor alive to keep it up for that length of time or I have to accept the fact that some issues associated with my brain injury are permanent.  If you think I haven’t attempted to correct this dilemma then please think again.  I have gone as far as speaking out loud the request or go as far as trick myself into remembering to no avail.  I have placed the letter I want to mail under my smokes because I won’t forget them.  I have then left for the mail box and gone to light up a smoke and realize they are at home.  I turn the car around and run into the house and grab the smokes leaving the letter behind and only discovering that when I’m at the mailbox.  It is a dichotomy or maybe even a ‘trichotomy’, if that were even a word which it is not, however the object lesson is that I can remember.  The problem is that I have greater difficulty recovering the memory from the memory banks and this is where I run into problems.  I also hear what you say and can remember what our last conversation was about, with a little prompting, but names or pertinent information that I need to recall instantly, fails me immediately and I must use the information or the name often enough that it becomes part of my long term memory.  This does not guarantee swift recall of that information.  I often look at a person and the name is gone even though they have been friends for several years.  If I relax the name might come back.  If I hear the first name, I’ll get the last name and visa-versa.  
With regards to eastern psychology, the intellect or the embodiment of the statement “I am” remains true.  The very fact that you are here defines this fact but the “who” we are has been altered.  Besides relearning the lost abilities, we have a new personality to become accustomed with.  This personality may be angry, complacent, happy, sad or a combination of them all.  We may not recognize the new you and even the brain injured whose intellect tells him/her that things have changed but may not know how to get back to the person he/she once was.  I know I repeat myself.  I try not to but often times I fail and then I kick myself for not overcoming that obstacle.  I often get mad at myself for forgetting.  I am probably more attuned to the fact I do forget but I don’t know when normal ends and the disability commences.  I have to accept that it is normal for me to forget often.  With that in mind it is still disconcerting when you catch yourself forgetting.  You have to allow yourself some grace and laugh at your short comings or you would go nuts.
            I am fortunate that my personal battle is minor in comparison to many other brain injured people.  In many cases they have lost everything, their support mechanisms, their income, are on welfare making between 500 and $800.00 a month.  They have mobility problems complicated with anger outbursts.  They are withdrawn, taken advantage of, are told it is all in their heads receive no rehabilitation or treatment for their anger, obsessing, sensitivity to light or sound and eventually end up in one of our local penitentiaries.
            To avoid all of this one needs to fully explore the full impacts of brain injury upon the individual and the entire family and educate everyone involved including relatives, friends and quite often the medical staff so that one can create a support system for that most vulnerable injured member and his or her immediate family. Most important in this is the longevity of that support.  It will go on forever and those close to the patient need to understand this.  Healing will not be a sprint but rather a marathon that sometimes never ends.
            In this guide I mention some of the most conventional methods of post trauma treatment but cannot and will not rule out other important holistic approaches that may offer relief and promote healing equal to modern medicine.
            We have seen a blending of east and western medicines and I feel that both have a lot to offer if they are properly researched before they are applied.  I do not recommend that one stops taking medication to control seizures because you heard that some ancient herb will have the same affect.  Do your homework and include your physician in any decision.  A holistic approach is honorable but without the proper guides in place, could prove to be most harmful.  We all know the old story that just because it is natural does not mean it is good for us.  Heroine is dangerous but the byproduct morphine used in a medical facility can reduce the pain.  The same can be said for cocaine and it’s byproducts we use daily in the form of Novocain and Solarcain.
            I have met with a psychologist, Dr. Colin Mallard, whose eastern psychology approach to healing is to the layman in the western world, different and maybe even foreboding, however I found it to be fresh and quite exhilarating as it gave me yet another angle in which to attack my disabilities and improve my overall physical and emotional health.
            I’m not here to recommend one treatment for another but the eastern psychological approach is different in its approach to healing the whole instead of just the part.  Western psychology is only recently acknowledging and incorporating some of these time tested eastern approaches in their treatments.
            At one time when a child misbehaved we sent the child to the psychiatrist and he would treat the child.  The child would return and then another child would act out and the family would send that child off to the psychiatrist.  Then a parent would feel like they were at their wits end and off they would go.  Now the western psychiatrist treats the family as a unit which is something eastern psychology has done for thousands of years.
            The objective of this book is to offer you several approaches to healing.  I have mentioned that the entire family is in jeopardy when a loved one is brain injured and thusly the sooner you include every affected member in the healing process the sooner all will be able to deal with their new roles within the dynamics of the unit known as the family.  It is important that one understands that the family extends to all those who are impacted by this injury.  It includes the spouse, the children, the grand parents, in-laws, friends, employers and even co-workers.  The more support the individual receives the easier the journey will become.  The better advised and educated the individuals involved, the stronger the family becomes and this in itself will improve the overall recovery of the brain injured.
            Can I convince you that you should explore eastern based medicines, like acupuncture, and psychology, yoga and the like?  No.  I can tell you that there are truths within these teachings that may have profound positive impacts on your life but you must be willing to seek out those answers first or they will evade you.  As I was informed by Dr. Mallard, I did not need to be convinced about the truth that gravity exists.  I was well aware of the affects of gravity when I tried to walk for the first time and fell down.  I did not know the word gravity but I knew it was there and no one has had to convince me of that since.
            The same can be said for his approach to healing.  He simply reveals similar truths that have always been there waiting for you to see them.  There is no convincing required.  As he taught me it is simply altering your point of view to see that truth and when you are ready to see it, it will appear.  The analogy was simply this, if you catch a fish and pull it out of the water, remove the hook and then return it to the water, for the first time in its life the fish realizes that it swims in water.  It saw it from a different point of view.
            So don't hesitate to explore medicines and treatments from different disciplines because it will take many kicks at the can before the right combination works for you.

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