Thursday, November 1, 2012

Neurotrauma: Where is the Starting Line and where is the Finish Line.

This will most certainly qualify as a simple "rant".  I do not have anything particularly scientific to deliver, nor am I likely to mention anything that many haven;t likely already pondered...however, putting pen to paper (or "finger to keyboard", in this case) has always been consistently reliable in helping me to integrate and internalize certain ideas and concepts.  So perhaps this brief post is more "therapeutic" as opposed to enlightening.

Over the last 6-7 years within the CP / Neurotrauma landscape, I have had the privelege of engaging in hundreds of discussions and consultations with families from all over the world regarding the very specific and ultimately unique experience of having a child with some form of neurotrauma.  At face value, it would seem that this exposure and experience would yield some relative sense of "confidence" in being able to accurately identify and effect positive changes in the overall mindset of these families and their extended family unit.  However, the more this experience grows, the more my understanding grows as to how unimaginably complex this world is.  To be precise, it is a tangled web of fear, doubt, worry, stress, and potentially some guilt.  Within all of this mix of emotions, the concept of "where do I start" and "when will I be finished" is often contemplated...but is seldom answered.  Further, there is the additional stress of "what is the right path between start and finish"...which is often clouded and muddied by the background "noise" of competing rehabilitative philosophies and schools of thought.

In many circumstances, I have found that my efforts to "enlighten" and "educate" only served to contribute to the amount of "noise" these families were experiencing.  Although most professionals have genuine good intentions, the reality is that there is no real true concensus among neurotrauma professionals as to the best course of action...even to the extent where there are competing diagnostic definitions!  Therefore I was required to take a step back and search for a more "user-friendly" approach...which couldnt have been more intuitive.

Help to filter out the noise.  Before anyone can understand you, they must first be able to "hear" you.  Therefore, your first attempt should not be to "re-train" or "reprogram"...rather to provide some form of noise-cancelling support so that the family unit is more able to concentrate and think with more clarity and efficiency.  This involves some discussion / exxplanation / "de-briefing" on their experiences to are those x-rays evaluated...what are the systemic considerations of such procedures...what is/are the general perspectives of the medical community, etc.  I equate this to the experience of trying to watch a televison show on an old black and white TV...with white noise and static buzzing on the screen, other channels popping in and out, and sometimes the signal going out completely for a time.  In this sense, my honest and transparent efforts would be the equivalent of the neighbour dropping in to play with the rabbit is likely appreciated, but often times just as distracting.  Providing some insight into the more global considerations of the specific condition will ultimately generate some overall understanding and therefore result in the establishment of an intrinsic "filter" which contributes to clarity of thought. 

This establishes a relatively reliable "starting line".  Although many wait anxiously for diagnosis, the realities of the journey are still the isn't always necessary to defer your strategy until that point.  With respect to the obvious second question "where is the finish line"...the answer is generally not the most popular.  In truth, no one can responsibly provide the answer that so many people are looking for.  With all honesty and respect, this is a fundamentally wrong question to ask.  Even if someone could magically glance through a crystal ball and provide you with THE ultimate answer...would this determine whether it is "worth it or not"?  This is analogous to a young child setting a lifetime goal of achieving a gold medal in the Olympics and asking "is that possible".  Further, if that goal was never to be achieved, would all of his/her efforts have been in vain?  I recently heard a very insightful and powerful statement from a collegue: families spend so much energy trying to prove to the outside world that their child has value and that they are worth it.  This mindset ultimately contributes to the "white noise" that surrounds establishing "pre-set" standards of achievement and often times unrealistic measurement tools.  The finish line should therefore be honestly and responsibly defined as "unset and undetermined".

Instill an understanding of the "Happiness Quotient".  I will outline the genesis of the Happiness Quotient (HQ) in an upcoming post, but it's beauty lies in its simplicity.  Although it can be expanded in many different ways, it is essentially a balance between a number of oppsing metrics:  Pain/Pleasure, Joy/Fear, Achievement/Failure, Relaxation/Tension, and Satisfaction/Frustration.  Within the everyday life of a child with CP or neurotrauma, there are far too many events that contribute to the negative metrics of this equation.  There is always some consistent muscular tension which may induce some pain as well...inability to effectively communicate to loved ones breeds frustration and many cases, positional changes generate periods of fear, etc, etc.  Therefore, the role of the family (and extended family) partly becomes a source of contribution to the positive metrics.  Establishing those activities that create some form of joy...therapeutic interventions (regardless of their overall philosophy) that generate definite periods of relaxation...and even frequent physical contact.  Hugs ARE therapy...therefore they should be considered as fundamental tools in establishing some equilibrium in the HQ.

Definitely a rant...possibly too "fluffy"...but hopefully somewhat stimulating!



  1. Oh, Gavin. . . not too fluffy. You are right on the mark! As you know we have been on this neurotrauma journey for a long time and we can "hear" the "unset and undetermined" honest responses with gratitude because our goal with Adam is very simple - continually working to make him more comfortable in his body AND improving the quality of his life. The concepts we embrace with ABR - even the lack of answers regarding the finish line - well, we just hear HOPE that his life and ours can be better than it is today if we DO THE WORK.
    Grateful for your thoughts,
    Sharon Dzialo

    1. Sharon, it is always reassuring to hear from you and, of course, Phil. A great deal of my learning and understanding comes from my experiences with you guys and Adam. I consider my time with you all as very valuable and a great learning experience both professionally and personally. Im not sure if you have noticed "The Bookshelf" here on my contains the most influencial books I have read to date. Ceramic to Clay most certainly belongs there! YOU guys are my teachers and I am grateful for all you do! All the best! --Gavin--