July 24, 1998..."If There is a God, He Will Have To Beg You to Forgive Him"*

My dearest son,

       On July 24, 1998 at 1:25 pm, exactly 15 years ago. you drowned.  I have never had the courage to use the word "drown" because of the terror that emanates from the image.  I have always said near-drowning, but the reality is that you did drown, submerged 25 minutes under the waters of a raging river, a foot entrapped in rocks.  Heroic efforts were made to bring you to the surface.  No pulse, no heartbeat, no respiration, just a blue pallor and a peaceful face.  God was asleep, he was absent, he was indifferent, perhaps he never existed.  Yet, you survived; not by any intervention of  divine nature but rather through the remnants of our evolutionary heritage's response to the possibility of drowning , the mammalian diving reflex.  You survived months in Intensive Care - left without speech, the ability to communicate, the ability to move, and a body which gradually froze in spasticity and contracture. You hovered between death and life and eventually chose life.  Everyone pretended to care, at least for awhile.  You were momentarily surrounded by friends, relatives, flowers, balloons and trinkets...for a awhile.  But that was 15 years ago.....
      To this day, I am plagued by images of you being entrapped and enveloped in water.  I am plagued by the terror which filled every cell of your being.  I am plagued by the fear of your impending death.  I am plagued by the image of planning a funeral as I traveled to the trauma center.  I was plagued by the possibility  that you might not make it, that you would be alone...your greatest fear as a child.  I am plagued that you always spoke to me about the need to be cared for, long before the accident.  I am plagued by the unspoken, unacknowledged burden and grief that these events have imposed upon my daughter, Aimee.   I am plagued...wounded, and the wounds can never, ever heal.  Maybe, they should not heal! One never gets over this terror.  For 15 years, I have never eliminated the fear that something can go wrong.  I think and feel the worst; smiling is a rarity for me, even though you, my son, always smile.  The sorrow is chronic and the fear unending.  I never, as a father, yield - always searching for the magic bullet which makes life easier for you.
       But you, son, are alone,   Alone in your fear, your thoughts, your dreams.  You are alone, even as mom and dad passionately and unconditionally care for you every minute of every day for 15 years.  Alone...but, does it have to be so?  Where are those friends, your cousins, your aunts and uncles, your teachers and therapists...all those who should care and reinforce the fact that you are not alone, that you are alive, that your life is worthy?  Why have they run?  Fear, lack of comfort, time and distance, not knowing the words to say. fear of the look in your eyes, my son,  guilt over the lies they told (remember, some said they would be there for however long it takes).  Do they see their souls in your loving and yearning eyes? What stories have they fabricated to justify leaving you alone?  Or is it the evil of human indifference, the "not caring" which renders you only an abstraction.
     July 24 will come and go.  We will celebrate your life and struggle with you.  Will there be a phone call to see if you are still alive?  Will there be cards, flowers, balloons, small tokens of love?  I know one hero who will call, who always calls on that day to say you are never forgotten.  One man, one constant voice in a wilderness and sea of indifference.  There are also a few others of importance and significance who will remember. Yet, your struggle is more meaningful than that of others to whom much is given...but should much not be expected from ?
        I have many questions to ask you?  How intense was the struggle to live..how much fear did you experience? Did you see the other side when you drowned?  Did someone tell you it was not your time? Did someone tell your spirit to return to your body?  How much did you fight?  How much do you remember?  What went through your mind?  Did you see the white light?  Was this side better than that side?  Did you know you would be cared for on this side?  Did you know the intensity your fight would demand of you?  Did you know and believe that  your parents would become warriors for you?  Did you know that your friends and relatives would soon leave?  Did you know that people would be fearful to visit you and to care for you...did you know in that 25 minutes what life would be like and why did you choose this life?  What do you feel about people who have abandoned you, who opposed you in your fight for justice?  Did you forgive them or is that forgiveness for them to find for themselves?  Is there any emotion which evaded your consciousness?  What prompts you to continue the fight on a daily basis?  Someday we will have this conversation...someday I will know and someday I will no longer have to wonder.  And yes, if there is a God, He will need to beg forgiveness from both of us...he was asleep, he was indifferent, he was absent...

       And so we continue, for many years ...as long as life sustains us.  We will continue with care and love to sustain your life.  We will continue with all the therapies and infusions of energy because they support life.  We will appreciate the efforts and energies of those who sustain the flow of that energy.  We will always continue for no reason other than these efforts are WORTHY.  There is no higher tribute to life than to live a worthy life.  To do this because you are my son, because there might be a god and a heaven, because we are linked, debases the reality that we do what we so simply because it is good, it is worthy and that is that sole nature of existence...to do good and live a worthy life.

dad

Of course, indifference can be tempting -- more than that, seductive. It is so much easier to look away from victims. It is so much easier to avoid such rude interruptions to our work, our dreams, our hopes. It is, after all, awkward, troublesome, to be involved in another person's pain and despair. Yet, for the person who is indifferent, his or her neighbor are of no consequence. And, therefore, their lives are meaningless. Their hidden or even visible anguish is of no interest. Indifference reduces the other to an abstraction. Elie Weisel, 1999

*“If there is a God, He will have to beg my forgiveness.” — A phrase that was carved on the walls of a concentration camp cell during WWII by a Jewish prisoner (Mauthausen camp).

About Us, But Never, Ever With Us.....Re-kindling PTSD

   Parents with children who are severely disabled inevitably suffer from PTSD, especially parents whose child's disability occurred as a result of an accident.  Sociologist Olshansky and later Susan Roos described this phenomenon in depth as "chronic sorrow."  Adam drowned on July 24 1998 after being under water for 25 minutes during an absurdly orchestrated  summer camp activity.  He was eventually revived at a trauma center.  That was nearly 15 years ago.  The trauma which we experienced  has been dealt with in  many ways, purged through ceremony, therapy and medication.  We "should" have gotten over over it.  We "should"  never relive the horror of imagining a child struggling for life, helplessly, under water in darkness and  fear embedded at the most deep cellular level (physiological terror) .  We "should" have gotten past anger. Right?... honestly, there are some wounds that never heal.  One doesn't get over it because someone else declares "it's time...get over it."  Trauma is relived and then triggered by many events, over and over again.  As a family, we have worked through the many layers of trauma,  We do not walk through this life as "undetonated bombs.'  However, a recent  horrific and unacknowledged experience, found us in the dark throes of PTSD!
     

Robert Kauffman, Ph.D.

 the look of compassion and understanding?

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        One "academic", Robert Kauffman. Ph.D.  (Rate Mt Teachers Link)  is, in our opinion, very responsible for our recent pain!  Kauffman recently published a college textbook, "Integrated Risk  Management for Leisure Services" in January of 2013.  He has a Ph.D. and is department chair in parks management and recreation at Frostburg State University, not exactly a stellar monument to academia. Frostburg State University's ranking in the 2013 edition of Best Colleges is Regional Universities (North), 124. (US News and World Report).........(and ranked "C" in academics at College Prowler)
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Amazon Best Sellers Rank: #2,883,638 in Books  (as of 7/10/13)
Amazon Best Sellers Rank: #2,922,124 in Books updated 7/13/13)

Well, Kauffman wrote this rather impoverished book with a multitude of references to my son's drowning.  He NEVER communicated in any way with us as he  was "writing" this text", never asked us to proof the text for accuracy, never asked if it was permissible to share Adam's story, never checked what effect it could have on us, never communicated post publication that he wrote about our son.  He never gave a second thought that resurrecting someones trauma was an issue.  We first found out about this debacle by googling Adam's name.  Well, trauma resurrected its ugly head, undifferentiated pervasive anxiety  blew over a calm spirit.  My question was "do you really care about Adam's and the family's true story?"  The book attempted to give advice to institutions to embrace the victim, yet the author blatantly denied the victim's pain and maintained a distant indifference.  Just like you would expect from an arrogant academician.  There was another co-author, Merry Lynn Moiseichik; however, she assured me in an e-mail that she did not have a role in selecting Adam's case nor writing about it.  Publishing the story of a disabled child, who can neither speak nor move, without his or his guardian's permission is classic abelism...outright simple.

        Sharon (my wife) reached out to him to explain the effects of his actions which he casually dismissed.  I confronted his actions and asked that he genuinely apologize for leaving us out of the entirety of the process resulting in re-opening of old scars.  He replied that I would apologize to him someday....the typical response of an obstinate academician.  Mediation has saved our sanity in the past, so I offered to pay all of his expenses to come here for a day, pay for a professional mediator, pay for it all....to close the wound and to have the man understand the effects of his actions or lack of actions on our lives...PTSD.  He never responded.  Our mediator, who worked through issues with us for months, even spoke with him by phone.  No response! It seems like the diametrical opposite posture of embracing the victim.  Use their kids story, never tell them, have them discover this apparent profiteering activity on line and essentially tell them to ......(fill in the blanks).
          In the last 15 years, several stories have been written about Adam's drowning at the hands of a summer camp.  Many journal articles have been written.  Countless newspaper articles were published and at least a half dozen news specials released on local and national television.  In every instance, the writers and producers communicated with us, received our permission, asked many questions and provided us a copy of the product.  Why?  Because they cared and were interested in the truth.  Kauffman NEVER communicated because he apparently didn't care about the effects of his words and then never cared when he was told that they opened wounds and scars which should have been left untouched.  Is there a clearer way to describe a closed heart?   To not even acknowledge a request for a fully paid mediation is a primary sign of arrogance and certainly a sign of a coward.
         Of course his text failed us at many levels, primarily it also failed Greenfield Community College, the sponsor of the summer camp.  He was adept at pointing out how the college failed (adept but not accurate) yet neglected to expound upon how the college and its president engaged in mediation, apology and closure.  Of course, he acknowledges none of this.  Piss on someone by failing to tell a full story and walk away.  He owes GCC a full and sincere apology and acknowledgement of their commitment to do that which  was morally and ethically right.  While Kauffman was legally in the right since Adam is a public figure, I would hardly use the words ethical or moral in describing his approach.  To tell the truth, the book wasn't even that good, not at a $67.00 price tag....talk of my perception of purported profiteering.  I have lived "leisure activity trauma" and its aftermath through six years of bitter litigation and could give advice in one paragraph. Simply and always accept responsibility for any incident which occurs under your care and ask the family immediately "what do we need to do to make this right!"  It is easy to write about something that you did not live on a daily basis.
       And then we have Frostborg's President, Jon Gibralter, Ph.D.  After an impassioned three page letter from me imploring his assistance in intervening with Kauffman...nothing!  Another righteous hero!
       There is a lesson to be learned here.  When dealing with parents of disabled children who hold trauma in every cell of their being, communicate with them.  When they tell you that you have failed to communicate, acknowledge that they are speaking their truth, apologize and do better...do the right thing.  They know their realities, they know their pain, they know when they are being patently dismissed  ... there is no greater evil than the evil of non response to a person in pain.  Traumatized people never just get over it, their wounds do not completely heal, no matter how hard they work. They care for their disabled kids 24/7 for life because it's the worthy thing to do.  To refuse to engage with these wounded warriors when they request it is the antithesis of  a good human being.  There is still much more to come....

It is, after all, awkward, troublesome, to be involved in another person's pain and despair. Yet, for the person who is indifferent, his or her neighbor are of no consequence. And, therefore, their lives are meaningless. Their hidden or even visible anguish is of no interest. Indifference reduces the Other to an abstraction.

Elie Weisel, The Perils of Indifference, 1999

NB: I did inform both gentlemen that I wrote this post which referred to them...

     
       

ALL Good People and Dogs Go To Heaven....the Pope

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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!