Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Thursday, May 1, 2014

A Broken Man Cannot Be Broken...a new book

Click here to purchase

     Some publications are memoirs, some are narratives, some are fiction.  It is rare that a book of poetry resonates with my soul.  To touch the deepest parts of my self, the poetry of Eric Fischer, probes the issues of very extreme caregiving, of life with a severely disabled son who lives with Ohtahara Syndrome, of introspective views of other very medically compromised children, of living a worthy life and of death, a topic we all avoid.  
      Eric Fischer, whom I consider a dear friend, lives in Israel with his son Segev.  Caring for Segev, who is a very severely disabled 16 year old, has shaped his life and his view of reality and of the potential of human existence, the sheer pure dignity of life in the world of disability.
      This book of poetry which spans nearly 20 years of writing and reflection probes darkness, doubt, living a worthy life and death.  There is an absence of the superficial and the overwhelming presence of the depths of human experience and understanding.
      For all people, for parents who care intensely for severely disabled and medically fragile children, for those who face the death of their children at any moment, for those who confront the passage of parents, for those who struggle with these battles alone...this book of poetry is a MUST read for you.  You will be able to see the world of disability from a purer perspective and understand the human spirit confronting the unimaginable.  You MUST read this book of poetry...and read it slowly, read it as a daily meditation in your life.  You will leave having learned and experienced.
     It is an honor to call Eric a friend.  It has been an honor to read his collection of poetry and meditate on each piece.  It is a honor to reread the collection.  Of course, the book lives and embodies spirit and any profits contribute to Segev's care.  Please buy a copy of the book using the above link.
      Eric also blogs at: place to visit and absorb a real story of living a worthy life.

Tuesday, January 21, 2014

Terror, Aloneness and My True Community

Adam, January 21, 2014


At the Falmouth Hospital ICU, alone with my love, my life purpose. Adam developed bronchial pneumonia quite suddenly. After admission, his chest was heaving so unnaturally, terror racked his face...every breathe is a struggle to live. He was in fear, I was in fear. Fear is a poor word, terror better describes the feeling. Terror is accompanied by tears, many tears, tears shed alone.

His infection compounded by his cellular memory of drowning is more than the human spirit should endure. But, he is a warrior, a fighter with his mother and father by his side every minute.  The pulmonologist placed him on a vent and intubated him to allow for healing and rest.  Waiting to grow a culture to determine the right antibiotic.  He's given five antibiotics and they need to reduce them.

Sharon and I live in his room, sleep in his room, not from worry, but so that he never feels aloneness...the greatest fear that anyone can experience.  He will be ok

My greatest desire is to be surrounded by physical presence of support so that I can be strong although weakness is to be accepted and overcome.  Family, except for my seven month pregnant loving daughter and her husband, have never offered to give us relief and sit with Adam  I have had the love of hundreds Facebook friends, all of who have severely disabled kids sending healing energy and light.  I am wrapped in this love of my community.  A few neighbors brought food and compassion...without asking "what can I do?"...they just did because it was right.

My belief is never to ask terrified, exhausted parents "what can I do?"  Just do it.  Come here, family, and wrap us in the tenderness of your strength.  And, a phone call or an excuse, is woefully insufficient...just do what is good and worthy.  Come and wrap us with your love through your Adam your love in his time of terror and fight.  It requires time and courage, but all of our time is limited and courage springs from deep within...all of us want to live worthy lives, good is the meaning of life:  never allowing our disabled kids to feel fear, to feel alone but only to feel love which sustains life.  This is not a time for regret, but a time to learn to be the best we can.

Adam told his clairvoyant many years ago, at a time when we performed ritual to have him keep his spirit in his body, that "Love means being here, even when you don't have to..."; I spoke the same words at Aimee's wedding.  Be here!

To my Facebook community and many of you I have not met personally, I love have taken time to express words of love, hope, presence, tenderness and with you I no longer feel alone.  We will survive and so will our warrior son....My joy, my daughter Aimee had offered to do take Ollie, who can be a pain in the ass; to sit overnight with Adam in ICU, despite she is a corporate tax manager in the midst of a busy season and seven months pregnant.  It take no skill to recognize true love.  She has learned that "Love means being here, even when you don't have to."  It such a simple formula to life a worthy's all that is necessary to live a worthy life.

Sorry for rambling, but the brain simply rambles...

Because of indifference, one dies before one actually dies.

Friday, July 19, 2013

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 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 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 do good and live a worthy life.


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).

Wednesday, July 10, 2013

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?
        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)
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 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 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 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....

Elie Weisel, The Perils of Indifference, 1999

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

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