OK, Happiness Is.....

"Taking Mercy"....When Right is Wrong and Wrong is Right?

       I have carefully read many blogs lately which have unequivocally condemned parents who have killed their disabled children.  I have carefully read and reflected upon many blogs which have condemned the media for its emphasis on the lack of attention given to the children victims and the emphasis placed upon the "burden of disability" on the parent.  I have read many blogs written by people who have media reports as their only frame of reference, and many by people who have not experienced caring for non ambulatory, non verbal, medically compromised children.  I have read many blogs written by people who are long on condemnation and short on empathy and  very short on compassion.
        I believe that many issues in morality and ethics are black and white.  Rape is wrong, always.  Theft, when one is not on the brink of survival, is always wrong.  Murder, as revenge, as part of the commission of another crime, as rage, as jealousy, as punishment,  is always wrong.  There are many areas of human morality which are clouded by a karma which possibly can be mitigated.  Even grave karma, can possibly be mitigated.
        Today, I viewed a video about the beliefs of Robert Latimer and Annette Corriveau respecting the euthanasia or killing of their disabled children.  As the parent of a severely disabled child whom I have loving cared for since 1998, I wanted to condemn their actions and their beliefs.  I could not, but I could cry....many tears.

       Robert Latimer killed his daughter who had cerebral palsy, endured numerous operations and who could not tolerate pain relief medication because of contraindications with seizure medications.  Annette Corriveau wants to kill her two adult children who have San Filippo Syndrome.. I wanted  to condemn these parents because others would have me believe that their murder would devalue all disabled people, that their murder would reinforce the belief that some "life is not worthy of life."  I could not think in terms of right and wrong and black and white.  Annette Corriveau refused to discontinue life support (withdrawal of the feeding tubes)  because dying of an absence of hydration and nutrition was cruel and horrifically painful, she wanted them put to sleep.  I wanted to pull out my indignation and  religious morality (which I don't really have), my secular humanism (which I pride myself on) or my disability advocate "hat", but I could not.  I could only shed tears...

       Would their actions be misguided mercy killing, legalized assisted suicide (which I constantly rail against), euthanasia, genocide or plain murder?  Would the desire to end horrific and unmitigated suffering be an act of ultimate parental love?  I only have the raw emotion of tears and an absence of judgement!  I would pray never to face such a circumstance and then, whom am I to speak about the decisions of others?

       What I did see in watching the experience of these parents was a profound lack of affect.  I am sure that they have lived a thousand lives, have experienced a thousand thoughts and moments of introspection.  I am sure that their actions are thoroughly premeditated and consonant with their hearts and souls.  I believe that the absence of anguish and loss of affect indicates that they have metaphorically died long before their children.  After all, the spirit leaves long before the body ceases function.

       I am left wondering.  My wife and I have been able to leave a written "advanced directives" that no extra-ordinary  measures be taken to prolong our lives when our bodies are incapable of sustaining life.  The suddenly disabled, the progressively disabled, the born disabled have never had the option of  "advanced directives."  Who is it left to make the decision?

       I know very little.  I know that I cannot be outraged nor condemn these parents.  I know that I cannot judge.  I know that I am not a god.  I know that life is transitory and I know that most parents strive to love their children the best they can.  I know that human resilience is not infinite; it has its limitations.  I know that most people have a deep and abiding conscience.  I know that  the "book" speaks of not judging others, lest one be judged.  I know that my only reality is tears.....and you?

        

ABR Egg Rolling on Adam's Back...Fixing Lots of Stuff

       Well, Adam has scoliosis (which has improved dramatically); a depressed vertebral column; insufficient space between the vertebrae, and intercostals which seem to fuse ribs together. Also the illiacs and the sacrum need to be shifted forward. These issues are common to the collapse of the myofascia which often are a result of Traumatic Brain Injury and a near drowning.    
         And so, here is a video in which Leonid explains how to use the egg and the "blob" to roll on Adam's back and extract the dural column and "unglue" the intercostals. The instruments and the technique have been further developed since our last visit six months ago. We expect clearer and deeper respiration and increased flexibility as well a strengthening of the core.

ABR Egg Rolling Demonstration on Adam ..Separating Upper Ribs from the Clavicles

The New, Improved Egg Rolling Exercise...a demonstration of refinements to the egg rolling exercise by Leonid Blyum. This video focuses on selection, hand technique and work on separation of the clavicle from the 1st and 2nd ribs and their connection to the manubrium.  The fusion of the myofascial fibers  result from their collapse during the aftermath of a traumatic brain injury, This separation is vital for the improvement of respiratory processes in the upper thoracic regions of the upper anterior portions of the chest wall.

 

ABR Evaluation, April 2012

       We were able to participate in a two hour evaluation of the history of Adam's progress over the past year of ABR (Advanced Biomechanical Rehabilitation).  Leonid Blyum, through a pictorial history of Adam's body was able to demonstrate the changes in his core stability, thoracic expansion, vertebral lengthening and pelvic floor adjustment. Positive changes in the strengthening of the myofascia, which supports all structures in the body, also presents future  challenges which need to be addressed.
        We were fortunate to share our evaluation with the many members of the ABR international team from South America, Europe, Canada, Hong Kong and a guest and friend from Hawaii.

Sharon Dzialo, Leonid Blyum (developer), Annie LaChaud (Director ABR Canada),
Sarah Lee (Director ABR Singapore), Diane Vincentz (Director ABR Demnark),
Gavin Broomes (ABR , Argentina) review Leonid's photo records from
the past years.

Leonid explains how Adam's respiratory compartments have expanded from the upper thorax
to the lower thorax...a deeper breathing, which also brings up and out years of
accumulated "gunk" in the lungs.  Not pretty to look at, but it's a transformational landscape
based upon excavation of submerged and rigid structures.  This "archaeological dig" takes
years to extract the vertebral column and unglue intercostals, but it is working its magic.

Ball rolling along the vertebral column and also along the illiac-sacral triangle
has allowed Adam to sit more squarely in the chair for longer periods of time.

Gavin Broomes (Argentina) and Sarah Lee (Singapore) video
Adam's evaluation by Leonid for training purposes at  their respective
ABR centers

Leonid examining upper thoracic division developing in
Adam's C-7 and shoulder blade areas which need further
"excavation" and extraction for core stability

        The evaluation highlighted many positive changes in Adam's core strength, head stability, respiratory capacity (especially in the lower thoracic areas), increases in the spaces between the vertebra in the dural column, and a stabilization of the pre-existing pelvic tilt.  

        Also the evaluation indicates that work needs to continue on the intercostals, dural tube, area between C-7 and the shoulder blade, the occipital area, and the space between C-7 and the should blade.  Much emphasis will be also placed on the anterior thorax and continuing work on the illac-sacral triangle.  

        Interesting to note is the fact that in a traumatic brain injury the body loses its motor map, which needs to be regained.  Two legs are treated as one because of the loss of a motor mapping; two arms lack differentiation and compartmentalization...many projects to work on.  The latter notions seem to be consistent with the theory and work of Anat Baniel who trained with Moshe Feldenkrais.  This is another piece of the complexity of Traumatic Brain Injury: the body needs to re-learn its motor map.

        The following post will focus on the prescriptions and exercises for the next six months.

ABR in Montreal: April 4 - April 7, 2012

         Well, back again in the city of perpetual road construction and re-construction and more traffic tie-ups than perhaps any other place in civilization.  Today, we begin our ninth (9th?) year of work in re-sculpting Adam's body.  Changes are happening and the changes produce challenges in their own right.  We need Leonid's learned eye and adept hands to help is discern the nature and direction of the myofascial change and to develop a treatment plan for the coming months.  At least the boy could never complain about lacking human touch...how about all day!
        Anyway, I cannot get pictures up into blogger from my computer at our hotel in LaChienaie...I hope this is a transient Canadian issue...will post more pictures from the evaluation and new exercises when we get back to the "mainland"...hopefully will post on Monday!