Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30
Showing posts with label Adam Dzialo. Show all posts
Showing posts with label Adam Dzialo. Show all posts

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 presence...show 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 lives...it 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 you...you 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 anything...to 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 life...it'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 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).

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 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....

Elie Weisel, The Perils of Indifference, 1999




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

     
       

Thursday, May 23, 2013

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.

Sunday, May 12, 2013

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!

Sunday, November 4, 2012

The Wedding......A Time for Magic

       My daughter, Aimee wed Tony Iannotti on November 3, 2012.  It was a day of magic, awe and wonder.  Sharing a few photos of the day:
Pre-Wedding Preparations

Groomsmen with Aimee and Tony

Bridesmaids with Aimee and Tony

Mon, Dad, Adam and Aimee

Mom, Dad, and the uber-groomsman (Adam)






The Moment

Our Princess!!

Now, Mr and Mrs. Iannotti

One of many floral arrangements (this one for the vows)

Post Wedding breakfast

Dealing with pre-nuptial anxiety

The products of pre-nuptial anxiety



THE BLESSING GIVEN BY THE FATHER OF THE BRIDE (me)

Apache Wedding Blessing
Now you will feel no rain, for each of you will be shelter for the other. Now you will feel no cold, for each of you will be warmth to the other. Now there will be no loneliness, for each of you will be companion to the other. Now you are two persons, but there is only one life before you. May beauty surround you both in the journey ahead and through all the years, may happiness be your companion and your days together be good and long upon the earth.   Treat yourselves and each other with respect, and remind yourselves often of what brought you together. Give the highest priority to the tenderness, gentleness and kindness that your connection deserves. When frustration, difficult and fear assail your relationship – as they threaten all relationships at one time or another – remember to focus on what is right between you, not only the part which seems wrong. In this way, you can ride out the storms when clouds hide the face of the sun in your lives – remembering that even if you lose sight of it for a moment, the sun is still there. And if each of you takes responsibility for the quality of your life together, it will be marked by abundance and delight.

In the middle of the party that never ends.....Aimee, Tony, Juli at the Coonamesett Inn
Falmouth, MA 











Wednesday, September 5, 2012

Back to School: Part 2A School-Based Physical Therapy

    
     Many children who have severe special needs and attend public schools will receive a "related service" called Physical Therapy through their IEP.  In many cases, these children are neurologically affected because of a brain insult, i.e. stroke, cerebral palsy, traumatic brain injury, muscular dystrophy, genetic mutations, metabolic disorders, etc.  These diagnoses result in movement disorders as a result of spasticity, dystonia, contractures of limbs, scoliosis, hip subluxations and a host of issues which impact a student's ability to progress educationally.
     From my experience as a high school principal for over 30 years, physical therapists and their assistants work with students to overcome these deficits to some degree.  Most of their efforts result in more severe, sustained damage rather than good.  Most IEP's call for 30 minutes of PT about 3 times a week; the equivalent of receiving no service at all.
       A bit of history is required.  Physical therapy is based on a model which has not changed over the past 50 plus years.  This practice is often in direct contradiction to research and science based evidenciary approaches.  I would assert that most school based physical therapists know little about the human body and movement, but they would be insulted.  I do know that the approach in school based special education program does not work, is not scientifically based and is harmful in many cases.
       Adapted physical education is a component of regular physical education...the curse of most students.  It's actually activity which could be directed by any paraprofessional.  Also PT may be beneficial to those students whose muscles may need some strengthening but possess normal tone.    That's where the value stops.
       School based PT's are infamous for intruding into territory where bodies or limbs or spines are spastic, contorted, dystonic, deformed, non-mobile, etc.  Here is the area which abounds with failure and damage because their bag of tricks is rooted in orthopedic modeling.  The bag of tricks includes stretching limbs, rolling spastic bodies on therapy balls and bolsters, standers, gait trainers, etc.  They also frequently recommend AFO's,  DAFO 's, and consults for medicines and surgeries.  So let me take a   look at several tricks which cause damage: stretching spastic muscles, standers, and orthotics.
       STRETCHING:  Well, it's obvious that a brain insult results in a collapse in the fascia.  The musculo-skeletal systems are there, but relatively useless without the support of a network of connective tissue called the myofascia.  Without an intact, seamless, strong fascia where the layers glide seamlessly, the other systems don't work.  An inability to hold one's head upright is not a function of a lack of cervical vertebrae, nor cervical muscles...it a collapsed fascial system.  This is a symplistic explanation of a newer view of a dynamic interaction of systems.

      So, PT's believe that if you stretch spastic muscles or contracted limbs, the muscles will lengthen.  When the muscles lengthen spasticity will decrease and movement is more probable or efficient.  The reality is that the opposite happens .. the more stretching, the more intensity of stretching, the greater the intensity of the spasticity.  This occurs in the context of collapsed fascia.  Despite the research, PT's stretch the shit out of kids' muscles.  It never works but you keep doing the same thing.
       Research references on stretching muscles and spasticity:



       STANDERS:  Here is another very expensive, relatively meaningless piece of PT equipment which after a few months of use ends up sitting around.  There is minimal research concerning the effectiveness of standers.  A PT will say that it allows a disabled kid to appear more "normal" in that he or she can be at eye level with kids and adults.  OK?  The only research that I was able to access was that over a 6 week period of time, standers did temporarily lengthen hamstring muscles ...note for only six weeks.  Anyone know of positive research?
Place this child in a stander with the effects of
gravity and you will amplify the existing curvature
      Of course the negatives are big negatives.  Strap a kid in an upright stander and imagine the strain on the system?  Here is a scenario with my son, Adam, in a stander for one hour a day.  First you have a weak core of fascia which envelopes the trunk.  Oh, the fascia supports the muscles and the vertebral column.  So, a weak support system of fascia leads to uneven support of the spine.  Some muscles pull left, others right, some are weak, others strong....a tug and pull on the spine.  Add an upright stander and add the effect of gravity pulling the cores and the spine downward...the weakness of the fascia provides the ground for an unequal distribution of forces which allow the gravity to pull downward unequally on the spine.  The result is scoliosis.  Once the curve is initiated, the more time in the stander, the greater the curve.  Seems simple.  The cure for the resulting scoliosis is either orthopedic intervention by fusing vertebrae or inserting titanium rods which have snapped due to increasing spasticity. 
Piss poor operation to insert a titanium rod
to solve the problem of scoliosis
This is a high price to pay for eye-level positioning.   And, the surgery further weakens the fascia through scaring and adhesions.   Do no harm?

      Orthotics?  They take the intricate web of bone and assume it's similar to a hoof.  One simple joint at the heel or the ankle.. The purpose?  Dunno!  Can't correct a deformity, can't strengthen the myofascia, can't prevent spasticity or contracture ... do have some mild effects with children who are walkers.  Big money and they hurt!

  •    Braces and Orthoses in Cerebral Palsy (YouTube explanation of why they do not work in most cases)  


      For the past 50 years we have considered the same interventions based upon faulty assumptions of how the body works while there is skepticism towards newer approaches which have positive and non-intrusive effects on the body.  But they don't teach these in PT schools which are probably endowed by durable medical suppliers and keep making the same devices without peer-reviewed research as to their effectiveness.  I truly believe that the present system of school based physical therapy is minimally bogus and generally dangerous.
      I could share thoughts and experiences in more depth on orthopedic surgery for scoliosis and various subluxations, on spasticity meds and baclofen pumps, and I will on request in a later blog, but only if there is interest (please comment if you want me to explore interventions of orthopedics or physiatry). 
      The follow up post will focus on promising modalities which work more effectively than the old stretch and pull. There are a number of promising approaches based on scientific evidence that you won't see in school, unless, of course,  you throw a hissy fit as a parent.  Remind PT's "FIRST and Always Do No Harm!"

Wednesday, August 29, 2012

Chronic Sorrow: Creating Ceremony for Healing


  
          "While chronic sorrow is conceptualized as being normal and understandable, there are no formal and customary social supports and expectations, rituals or recognitions of the catastrophic loss, since the person who is the source of the loss continues to live." (Chronic Sorrow, Roos) This sentence   from my last post on "remembering" echoed in my consciousness.  There are no rituals for chronic sorrow...no baptisms, no funerals, no goodbyes, no parties...Nothing to help the healing and thus sorrow gains the status of "chronic".  That is, unless you create a ritual...personal to each situation.  The following is a brief excerpt from  Sharon's book "Ceramic to Clay" which describes our ritual and shares pictures from the ceremony.  The event occurred in the Summer of 2001, three years after the accident.

How do you move beyond a catastrophic event? Time, everyone says. I was not satisfied with that response. I had an intuitive feeling that we needed to go back to the river. Three years had passed since Adam's near-drowning. He was now 15 years old. Adam was attending my husband’s school; this was the only way I could assure his safety. He was severely brain-injured, tube-fed, in a wheelchair. He was placed in a program for children with severe special needs, and he had Jody, a wonderfully compassionate one-to-one aide who acted like a second mother. Adam needed serious, loving, care-taking. Our daughter, Aimee, now 17, was completing her junior year in high school. I had returned to my job as a high school counselor. 

With help and guidance from friends, we planned a ceremony at the site of the accident. I was prepared for an emotional day, but I could never have predicted the impact of that day on my daughter. 

We began by offering tobacco and honey to the river;
to demonstrate that we knew the river meant no harm!
Aimee sat with us in our living room the morning before the ceremony. Aimee's life as she knew it had come to a screeching halt after her brother's accident. He was severely brain-injured and needed 24-hour care. She handled this with a mixture of anger, disappointment, frustration, and worry. Aimee had held on to her own life with incredible determination; her life was not going to change. She wanted her parents available, our finances solid, and, more than anything, she did not want to feel different from her friends. Aimee consistently challenged the premise that our life could never be the same again.


Our dear friends Terri and Jenny joined us for a quiet prayerful moment before we departed for the river. Terri had created the ceremony and would be facilitating the whole process. We were meeting a large gathering of friends, a few family members, therapists (old and new), and some staff members from the camp. The two counselors who had been supervising the boys the day of the incident had agreed to join us. 

To Aimee, our bright, beautiful, tenacious daughter, almost everything and everyone we had invited into our lives since that day appeared bizarre: the therapies, the alternative medicines, the spiritual practices. 

“Can't you just be normal? Can't you act like you used to? Why do you keep bringing strange people into our life? Isn't there any other way to do this?” 

I tried to understand her feelings. Prior to this life-changing event, my husband and I had not been aware or open to these healing ways. Aimee's continual resistance troubled me immensely. I did not want to lose our daughter while we worked so hard to save our son. 

Aimee invited two friends to join her for the river event. She refused to drive with us. She had chosen friends who might not judge whatever happened at the river that day. In other words, she felt safe with them. 

We arrived at the home of one of Adam's therapists who coincidentally lived very close to the site of the accident. People gathered slowly in front of the house, each one taking a moment to greet our family. Eventually, we formed a huge circle to begin the first part of the planned ceremony. Aimee held back, probably wondering what kind of religion we had converted to—the blessings to the four directions, the prayers, and the burning of sage. I concentrated on the ceremony, pleading for some sense of peace in our life. 

The group proceeded toward the river, singing a song written just for our celebration and gifted to us. 



River, touch our lives today. 

River, touch our lives today. 

Touch the anger and the fears, the guilt and the tears. 

River, touch our lives today. 

River, take them all away. 

River, take them all away. 

Take the anger and the fears, the guilt and the tears. 

River, take them all away. 

River, bring us love today. 

River, bring us love today. 

Bring the healing and the balm, the peace and the calm. 

River, bring us love today. 



Aimee ran to the river, impatient with the procession, not willing to sing. She stumbled down the steep and rocky slope. We had never wanted her to face the scene of the accident alone. It had taken me three years to visit this place, and I had been accompanied by a therapist. Facing the scene, visualizing the accident, had been an overwhelming emotional experience for me. Aimee had no idea what she was about to experience. With the exception of the initial days and weeks following Adam's accident, she had never allowed herself to feel. If she felt sad, bad, or anxious, she could not function, and then she would not feel normal, a condition she would find intolerable. She therefore avoided feeling. Somehow, her stubborn, adolescent mentality worked this out for her. This day, however, would be different. 

When we reached the path that would lead us to the site, we were initially preoccupied with Adam. He had been in his wheelchair during the procession, but now he needed to be carried down the rocky, steep hill and held by the river for the second part of the ceremony. We had baskets of flower petals, each basket symbolizing a different emotion—anger, fear, guilt, and sadness. Phil and I awkwardly held Adam, his rigid body not easily conforming to sitting in front of us close to the shore and not far from the rock that had entrapped his foot nearly three years ago. I held on tight and watched as all of the participants walked in front of us, gathered petals from the four baskets, and offered them to the river with a blessing. 

After some time had passed, I began to search for my daughter. I found her standing away from the group, sobbing intensely. I left Adam with my husband and gathered her into my arms. 

“Mom, I hate this; I just want to leave. All of these people are weird. This whole day has been awful. I don't want to do this.” 

A bouquet of flowers had been set aside for our family, the same type of flowers used in the ceremonial baskets. I gathered them, took Aimee by the hand and brought her to the river's edge, and said through my tears, “This is how you can make peace with the river, the accident, and the huge changes in your life. This is what you can do because you miss your brother. Take these flowers—your anger, your fear, your guilt, and your sadness—and offer them to the river. The river never meant us harm. The river held your brother and brought him back to us.” 

With my arms around her, I watched as Aimee gently tossed the flowers, one by one, into the rushing waters. For one moment, one beautiful moment, Aimee joined us, no resistance. She allowed herself to participate in not only her brother's healing but also her own.

And so, ceremony is created for healing chronic sorrow...and must be re-created over again (still working on this).  To conclude with the amazing...after trying for several years to sell our house in Greenfield, we learned upon re-visiting the site of the river and the ceremony on the 9th anniversary date of accident, that the house sold.  Our broker called us on the afternoon of July 24, 2007...at the river with the news.  So, the Universe does care for its own.
.



Sunday, August 26, 2012

Just Remembering, Just Calibrating, Then and Now...

       I was recently triggered (unintentionally) by a friend's blog to return to a place of feeling ...it's hard for men to feel so we repress those feelings and live in the moment.  Often we forget that there is a history to the present moment  ... a continuous thread which pervades life and living.  I needed to go back and remember Adam prior to July 24, 1998, the moment of his accident and a point in a timeline of change and personal growth.  These moments below allow me to remember and experience that "chronic sorrow."  That is good...because I know that today is the same as yesterday, and, in many ways, better.

     "Chronic sorrow " is a set of pervasive, profound, continuing, and recurring grief responses resulting from a significant loss or absence of oneself (self-loss) or another living person (other loss) to whom there is a deep attachment.  The way in which the loss is perceived determines the existence of chronic sorrow...a painful discrepancy between what is perceived as reality and what continues to be dreamed of.  The loss is ongoing since the source of the loss continues to be present.  The loss is a living loss." p.26

       "While chronic sorrow is conceptualized as being normal and understandable, there are no formal and customary social supports and expectations, rituals or recognitions of the catastrophic loss, since the person who is the source of the loss continues to live.  Adaptations are usually drastic and disorienting.  Simultaneously and absurdly, the person who is the source of the sorrow may at times be socially unrecognized, as if he or she does not exist.  If there is no existence, there is no loss; therefore  the grief is unacknowledged and unaddressed by society." p. 2
        
      The above quotes are taken from a book, "Chronic Sorrow", by Susan Roos









Couldn't crop out the stomach and  double chin, but that was long ago ...
bit different today (sayin' that makes me feel better)





Taken just days before the accident (near-drowning)



       .....everyday is better than yesterday....the honor of caring for a severely disabled child/man.






Saturday, August 4, 2012

My Descent Into Madness.....

     This life of care-giving, year upon year, takes the mind where minds don't usually go!  That's not an original phrase but robbed from the rock opera "Tommy'" by The Who.  Most readers are too young to have a clue about this rendition.  Anyway, psychic triggers abound after the years and issues which most people in the "real" world would ignore ignite atomic explosions in my soul.  Last week, the trigger was organized religion....'nough said!
      Today, alas, today, it was the use (abuse) and handicapped kids in fashion advertising to promote the delusion of inclusion.  It reminds me of the day when blacks were included in advertising as long as they were light skinned blacks.  Blacks who were really dark-skinned reminded the masses of the agony of the years of ignominious slavery...can't do that, can we?  So we carefully picked just the right shade of black and the right features so these folks who appeared with whites in fashion mags looked like darker skinned whites.  Triggered the ever loving crap out of me.
Delores Cortes, Spanish Designer

      So, now we enter the world of disability inclusion; just so that we are all marginally PC and we can get the disabled community off our backs.  I mean, really now, with ADA, IDEA and the like dribbles of legislation, what more do these folks want.
       I am watching fashionistas use handicapped disabled kids to promote their new lines of wear.  First, light skinned blacks, then plus size women, now disabled kids.  Is there no extreme that we will go to in order to make a buck?  Here's the rub which triggers ever frayed nerve in my jangled tangle of neurons which even a valium won't abate.
Our friends at Target

       First take the right kid...someone with Down Syndrome who is cuter, more adorable, more hugable than the highest angel in the heavens.  Then take said child and use them to promote swimwear, to promote inclusive clothing in a chain store striving to break the corporate delusions of a Chick-fil-A or a Wendy's or a Limbaugh sponsor.  The message is that we are so fuckin' good because we include the adorable disabled child.
       Now this child has none of the pronounced features of a moderately severely DS child and could easily be mistaken for Sally down the street.  The issue is not because of a commitment to disability awareness or the promotion of inclusion in society.  The message is not that the lives of the severely disabled are worthy of life in the fullest.  The message is we "luv" cute disabled kids and we want to to know this so you buy our product.  The same is true of the purveyors of adaptive and assistive equipment...cute, well-groomed, almost normal looking kids. I know, and if you follow me in this blog, that all disabled kids, even the most severe are beautiful...I somehow think that society does not subscribe to our definition of beauty.
And our friends at Nordstrom's

       Did you ever see an advertisement for a product which features a kid with a trach, with a g-tube, having a massive seizure?  How about spastic kid with contorted hands and feet?  How about a kid modeling an aeropostale shirt with severe scoliosis?  Better yet, how about a kid in a wheelchair with a urine collection bag attached to the side?  Now that's a pair of jeans that would sell and make the manufacturer a billion..
One cool dude...what's he selling?

       Why do I feel that a rampant hypocrisy underlies the depiction and the inclusion of adorable disabled kids in advertising?  Why do I feel that the really really severely disabled are unworthy of fashion modeling?  Why is that I feel severely disabled can't sell clothes, standers, wheelchairs or modified toilet seats?  Something is wrong and like I said my "mind goes places where minds don't usually go?"  Is this my descent into madness?

Not to be limited to cute, hugable kids

Like I said, the perfect kid in the perfect stander...bet it sells......


    So tell me, have I descended into the eternal hell of madness?

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