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Final Days...That It Will Be So For All !!

       Death faces us all; some with an ability to verbally express what life has meant.  Others have an inability to express what life has meant, but, nonetheless, the experience of life is there.  The inability may be a function of severe disability, the suddenness of onset of death, accident or other life circumstance.
       I would hope that we all are able to face death with the grace and dignity of Zach Sobiech.  Those medically fragile, compromised children and adults who have been cared for with diligence, full attention and unconditional love express without words the message of "My Last Days".  I hope that have the experience that their spirits emanate this joy for their existence and for those who are important in their lives.




       The value of life is not measured in years;  it is not measured through accomplishment; it is not measured by philosophical rants.  The value of life is that someone cared very much, even if  that 'care'  may be from a single person.
        We will all have our final days and it bodes well that we have loved and are loved, no matter how small our universe may be.  To parents who have lost a child, the words of Zach ring true...life was meaningful.  To those living under the threat of serious illness and medical complexity, Zach's words are a testament to the care of parents and caregivers.  To the rest of us, we should never want for inspiration, we should not ever overlook inspiration...inspiration is good.
        Able to express or unable, the testament to caring is there!  Know that every act of kindness adds to meaning of a short or a long life.  Indifference diminishes that meaning!  Inspiration takes many forms and it is good!

Breathin'....Sustaining Life Forces

 

 Breathing, respiration, oxygenation, the movement of chi, the life force which sustains, resides in a small set of paired organs.  The breath of the outer and movement of the inner....it is that which sustains every vital process in the body.  The simple exchange of the most basic molecules enables the body and soul to sustain connections to the universal process of life.
      In the world of disability, respiration is perhaps among the most vital and sustaining forces of life.  In the expanse of disability, mucus, stickiness, shallowness, lowered blood saturation levels, hyper or hypo ventilation, compromise the body healing and curing itself.  This exchange between the inner and outer worlds enhances, inebriates, defeats or compromises living.  To me, the lungs are paramount for my son; this organ and its process physically and spiritually maintain the force of life.
      If you not severely compromised, you can learn deep breathing, yoga, various respiratory protocols which enable a decrease of stress, a hyper-oxygenation of the blood, a rhythm of interaction with the outer and inner and an enhancement of immunity.  There are many conscious adaptive approaches.  BUT, what if a child or adult is so fragile, medically complex that conscious controls are not available?  So, so many of our friends have disabled children or adult/children who are challenged by forces of the body and the environment and they develop respiratory issues which make them vulnerable to a diminution of life force, to pneumonia, to shallow breathing, to airways and bronchi clogged with mucus, to.... are there interventions which strengthen the most vital of systems?
      One ABR (Advanced Biomechanical Rehabilitation) protocol which has significantly assisted my son is noteworthy;  it's a modification of a older protocol.  Posted a while ago on my Facebook page, I wanted to share this protocol for parents to assist in strengthening that which is so vital.  I know it is not the only intervention; I am sure others could add various techniques.  Breathin' is so very important.
       Here is our exercise explained by Leonid Blyum, founder of ABR , on Adam in April, 2013.

2013-04-22 Chest Exercises from Phil and Sharon Dzialo on Vimeo.

A Piece about Peace's Piece or "I wish that my child did not exist?"

There are all kinds of stupid people that annoy me but what annoys me most is a lazy argument.
Christopher Hitchens


I must confess that I have been an avid follower of Bill Peace's blog, http://badcripple.blogspot.com/. Reading it often, commenting infrequently....

Recently, Dr. Peace posted about those vile people who take issue with his positions about disability issues and disability representation. Shame on you all! Shame on you if you support the various "Death with Dignity " initiates because laws allowing the terminally ill to receive assistance in choosing a "good death" will suddenly enhance the demise of the disabled...that's because of the "slippery slope argument". Of course, by definition the "slippery slope" is an epistemological fallacy. "A" does not always mean "B". Also a note that extraordinary claims require extraordinary evidence.

Cures? Well, that's another vile taboo subject akin to incest. Isn't it much better to accept your child who cannot walk and look askance at recent developments in light weight exoskeletons?  Is it not better for a child with refractory epilepsy to just be accepted as they are?  Isn't it better to solely accept a child with severe spasticity and contracture than to hope that some day stem cell research will result in cure? Actually, if you didn't realize it,  the cure industry is the Satanic arm of Big Pharma. Just provide sufficient services to the disabled and adequate supports and all will be will in Camelot.  From my sarcasm you can readily ascertain that these are NOT my positions as a father of a severely disabled son.

So let's use a real life example. My son is spastic, very heavily contracted, with rotational scoliosis, and has multiple physical and cognitively expressive issues. Does that say anything to you? Well, try this experiment if you will indulge my ramblings. Tense your body, tense and intentionally contract every muscle you can....see  how long you can maintain this intentional position. One minute, two? Pretty painful; in fact, it's godawful painful; in fact, the pain is unremitting and intractable. Now smile while you're doing this. Interesting...now do this for 24 hours a day, 365 days a year, 15 years. Now, watch this suffering of pure humanity in your son for 15 years...would you hope for a healing cure, for an abatement of suffering?  Would you sacrifice your own life so that your son or daughter would not suffer?  Most parents would, but would the advocate of acceptance?

So, in the context of the argument written in this post by a man dismayed by his critics, he responds to a kindly mother and I when we rather gently question his disdain for the cure industry. Please read with the realization that it may be very difficult.

  william Peace said....
       Elizabeth, I have been thinking about your reply as well as Phil's. When you state you wish a cure existed for your children this is what I hear--and this may or may not be intentional, only you can judge this. I hear I wish my child did not exist. I wish my child was typical. By logical extension I wish people like my child did not exist. Talk of cure makes me decidedly ill at ease. (emphasis is mine) Is a quest for cure not an effort to eliminate those society does not value? I lived the first 18 years of my life as a typical bipedal person. I have lived almost twice as long as a paralyzed man. I consider my existence before and after paralysis to be equally valuable. Yet my existence is often called in question simply because I am not bipedal. Hence I would suggest we accept people for who they are and value that individual as they are.

May 8, 2013 at 12:33 PM

     As I mentioned in the opening of this discussion, this is quite a lazy argument - no proof, no objective validation, just a statement from what I perceive as a skewed academic mind.  Of course, I responded ... privately and by e-mail.  My words were unworthy of publication, private and spurred by indescribable rage (that means nasty, vile words).  I want a cure, I want a relief of suffering, I want life for Adam to be more filled with ease.  The parent of EVERY medically complex, physically and cognitively child wants  something to make life easier for the child, not the parent. Although a bit of reprieve for the caregiver might allow for a few more years of life.

      As parents and caregivers of very disabled children or disabled adults, we have accepted who they are and we fully value their humanity.  We spend every waking and sleeping hour doing what is right...to the very point of a profound weariness of the soul and the body.  I believe my words are the words and the thoughts of most every parent of a severely disabled child I have met.  I have no idea where in the recesses of any mind a human could say to another human, " your desire for cure, your desire to alleviate suffering is a function of an unconscious wish that "your child did not exist."  Vile....

        After a rancorous exchange, w. peace did apologize:

william Peace said...

Single Dad, I am well aware I hurt two people very badly. I deeply regret this. I do not want to engage further because I fear my words will only cause more pain and hurt. I was wrong. I am sorry. This is inadequate I know. Again, I am sorry.

May 9, 2013 at 3:08 PM

Well. many, many more than two people were emotionally battered by a generally respectful and insightful blogger on the area of disability and discrimination. Every single parent of a severely disabled child or adult was pained and hurt...every one that I have every met. We are all aware that cure may not be attainable in our lifetime, our kids' lifetimes or ever. That never precludes the search, the worldwide search for that which will make our sons and daughter suffer less...no matter what the means are.

I am bewildered that such a statement could be made questioning whether any parent could wish whether their child existed?  "I was wrong." does not explain the underpinnings of such a statement, no matter how admittedly wrong it was.  Why was the statement made?  What belief system underlies such rage?  "I was wrong" is insufficient. Not engaging in further explanation of what you said reflects more an attempt to stop a conversation than to avoid further hurt.  I want to understand where such an observation comes from when  it can be directed at the most vulnerable segment of the disability community.  Commentary should be withheld  and one's observations should be limited to one's experience and knowledge...people with limiting physical disabilities.  Please leave the caregivers of the severely disabled alone; it is a world you cannot understand.  Our issues far outweigh handicap access, "inspirational porn", neurodiversity, critical analysis of theatrical productions, etc. Our issues usually center around two simple, inescapable facts of life:  living and dying on a daily basis.  

Each severely disabled person and each caregiver of a severely disabled person experiences their life and their soul in a different manner...there is no standard approach, no model better than another, all barriers are very different.  Each one's emotions, motivations, energies, levels of resilience, levels of depression and levels of weariness are unique and sacred...and all are to be equally respected.  Every experience of this world is valid and it is inappropriate to evaluate or comment on other's experiences and expression of their disability.

You can never claim to be a disability advocate by vilifying or targeting portions of the disabled community.  It is already fractured within..  The assumption of a larger than life position in the advocacy world necessitates a larger than life responsibility to represent and understand all  or either to be clear whom you represent!

Little Job's Book of Broken Poems, Volume 2 by Eric Fischer

        My dear friend, Eric Fischer, has recently published his second volume of poetic reflections from the perspective of a primary caregiver of a severely disabled and certainly medically complex son,  Ohtahara Syndrome is a rare, debilitating disorder marked by epilepsy and numerous other medical complication.  Eric and his son Segev, reside in Israel.  He writes from the heart and soul and express the fullness of an unconditional love of an extreme caregiver.  Eric also blogs eloquently at  http://iamabrokenmanyoucantbreakme.blogspot.com/
         These poetic reflections express the soul of a father and his son in a thoroughly unique and insightful manner.  The book 1s available at amazon.com and also in a kindle format.  It is an absolutely must-read for parents coping with serious medically fragile and medically complex children.  Do not hesitate to order it for a moment, you will not regret.

Little Job's Book of Broken Poems, Volume 2 by Eric Fischer 
(click link above to purchase)

     Get's my highest recommendation!!!

I AM BACK........

     Well, my hiatus from the blogging world in disability land is over!  Many events have occurred over the past six months which re-energized me to continue Adam's story and my commentary about disability issues. I have grown weary of reading about a condemnation of parents of severely disabled kids who seek a "cure."  I am tired of self-styled advocates who maintain that search for cure translates into "I wish my child didn't exist."  I am tired of advocates who equate the amelioration of our childrens' suffering with a failure of acceptance of their condition.  I am tired of groups who rail against "good death" choice for the terminally ill and freedom of choice because they live in perpetual pathological fear that society is out to kill them.  I am sickened by the constant reference and rhetoric about "inspiration porn"; a juxtaposition of  words which are vile expressions unto themselves. I am tired at the times when  disability advocates rail against choices of other disabled people and criticize in an inflammatory manner how they choose to live their lives.
      I am irate at college authors who write books lately about Adam and fail to ever contact us, during and post-publication.  I am tired of college authors of texts about Adam's case who refuse dialogue about why they never contacted us until we only discovered the text on "google."  They negligently inflict emotional distress and could care naught because they seek notoriety and profiteering ....a story which must be told in detail.
      I have grown weary of victims who have become victimizers; advocates fighting discrimination against disability who become discriminators themselves.  I am weary of people who continue to focus on normal, when normal does not exist.  I am weary of those who rob others of hope and attempt to impose their world view on others...they believe they have the one true church where all people with disability must worship.
      It is time for a challenge to conventional thought, a time to review a world view which fails to evolve.  I am back!