Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Wednesday, March 28, 2012

Dark Places...


       I have been reading with great interest comments about the George Hodgins (murder) and Elizabeth Hodgins (suicide) which recently occurred in Sunnyvale, CA.  George was an autistic 22 year old man who was rather severely involved, behaviorally and cognitively.  He was non-verbal.  Elizabeth, his mother,  cared for her son and searched for a day habilitation placement when he aged out of school.  Nothing appeared to work out. No supports, no plans, no real assistance...she decided that their lives should end together.  It's commonplace to refer to this as a :murder-suicide. This is one story of many which follow the same theme....severely disabled child-loving parent!  These stories are legion.
       Many people, especially in the ASD (Autism Spectrum Disorder) community on Facebook, are outraged over the focus which the media has placed on an over-wrought, emotionally depleted care-giver mother.  Commentators focused upon the lack of attention given to the killing of a disabled child and the murderous act of the mother.  Writers and bloggers believe that yes, there was a paucity of services; yes, the mother was over-wrought and that she should be identified as a perpetrator and murderer.  Comments abound that the killing of a disabled child is a heinous action and that it can never allowed to happen again.

       Could there be another side to this very tragic story?  Is the world so black and white that no other explanations are possible nor plausible?  Could, in their dark place, the hidden recesses of the human psyche, there be a place for an act like this to be a act of love?  The murder of a severely disabled child is a heinous event if the parent lives, becomes unburdened and is freed from an impossible life without supports.  Is the scenario  identical when a severely disabled child and a loving, care giving mother leave together?  There are no blacks and white, no absolutes and above all there should be no judgements by those who do not know.  The dark places in our souls can reveal truths no one wants to hear.  So let's explore this further....

      My son is totally disabled and a medically complex human person (sorry, Amber).  My wife and I alone know his body:  how he needs to be fed, how he needs secretions cleared, how his bowels need to be stimulated and retained urine released.  We know how he signals pain and how he signals peace.  We know how to get him to sleep and when to re-position him.  We know how to clear his lungs.  We know how to prepare his pureed meals and provide a host of supplements and feed him over an hour's time.  We know when he is ill.  Doctors depend on us to tell them what is wrong and what needs attention.  Left to modern medicine, he would have his g-tube replaced and a trach inserted with regular suctioning.  We know how to manually release his spasticity.  We know his soul and his body as he is totally dependent upon us.

     Our dark place is that he will outlive us and if he does he will be alone.  Children/adults like Adam (who is now 26, 14 years post accident) usually have one option:  nursing homes, which are cesspools of germs, staffed by some people who are under-paid and blatantly indifferent.  Nursing homes for the severely disabled are rank with neglect, with abuse, with indifference and patients are prone to being sexually abused,  Placed in a nursing home with people of all ages, many of whom have lost their minds and spirits, is a death sentence.  Don't kid yourself!
       My dark place is that my son will outlive me.   My dark place is that no one else knows him, his body and his spirit; and that few really care...they all have to get on with their lives so they can enjoy their brief stays on this temporal planet.  In a nursing home or a residential placement, Adam would die and it would not take long, and even that length of time would be marked by horrific abuse and indifference....yes, that indifference that reduces people to an abstraction.  No one really cares about abstractions!

       My dark place leads me into the fear that my son will be alone and aloneness is worse than death.  He can never be alone, in life nor in death.  He has a father and a mother who love and protect him from the indifference and harm of the world.  My deepest darkest place is my son's aloneness...he does not deserve that nor will I allow it to happen.
       
       Would you condemn us or judge us if we left this plane together?  Would you understand our need to express our love to be together?   Would you mock our belief in the beyond?  Many people believe that their companion pets will meet them at the rainbow bridge and cross over together.  Can we extend that same belief to humans?  Would you condemn us as murderers of a disabled person is if we chose to be together at a point in time?

       Bloggers and newscasters who are  righteous and condemn Elizabeth Hodgins have usually not cared for a severely disabled, medically complex son or daughter and committed their lives to that task.  Black and white judgement is very, very easy to come by. It requires no effort nor an ability to "see and hear" that which is not apparent.  Judgement of others and their decisions is perhaps the greatest of sins, just behind human indifference.  What dark places to you venture to?  Our stories are legion!






23 comments:

  1. As a society Phil, we always want to point a finger so we ourselves are not suspect.
    Many of the most vocal people have no real experience in these matters and cannot know how they would react.

    Recently, as you know, my mother died. I don't say 'passed' because that's a nice word, whereas what happened to her is suffering that I have not seen, not even with my son.

    Possibly you will get many polarizing responses to this, brutally frank and therefore much needed, post of yours. People are afraid to be caught with their pants down, ethically and morally: so they will rant about things they really should keep quiet about.

    As I said my mother died and before she did I went to see her. Also as I said her suffering was, if not unimaginable, truly horrifying and my point in recounting this is because, having gone through a great deal of near death experiences, mainly with my son, but also myself, having treated a number of terminally ill patients up to the day of their dying, 'up close and personal' as we say, nothing prepared me for the tour de force of seeing my mother die.
    It was as if, no, it was actually a case of losing control of myself not only emotionally but physically. As though I was a stranger in my body or the other way around.
    Extreme stress and emotion, the kind that becomes sharpened like a knife when providing continual chronic care for someone you LOVE, is exactly the kind of situation that can see people make bold decisions that otherwise they wouldn't have.
    I know 100% for certain that if my mother had been given better care, easily within reach if there is the will, she would not have signed papers to end her life and especially not in the way she was offered.
    Nevertheless the only thing I truly felt at that time was that she shouldn't need to suffer.

    We can easily judge people for taking someone's life, after all people will come here and say, 'perhaps you are condoning the killing and therefore we should not punish anyone'. Obviously such blind and simplistic thinking is not worth consideration.

    While at the hospice I got into an argument with a nurse. She had pulled me aside after I had increased my mother's oxygen supply (which she was given only because I demanded it), stating that my doing so without first consulting her and the doctors, going through the protocol of a meeting first, I was 'disrespecting her profession'. She was very calm and nice towards my mother but that is no excuse for a lack of medical knowledge, let alone a lack of humanity. Then she dropped the bomb on me, saying, "you know, when I go home at the end of the day, I want to do that with a good feeling".
    I could've ripped into her but preferred to leave her in her ignorance. Nice choice of profession, sister, I thought. Yeah, you get to go home. Go home and think, that no good so and so, coming around and trying to boss us! The nerve!
    Yes, sister, you go home happy while my mother dies in agony.
    If I could have ended it for my mother at that moment, I would have. I contemplated it, but felt it would complicate things for many other people involved.

    Understand: I didn't want to euthanize her because it is 'the right thing to do', but because she was suffering unnecessarily. In other words treated improperly and this was a question of pure ignorance, disguised as protocol: because you know people should suffer horribly while asshats twiddle their thumbs and pretend to be caregivers.
    This is what happens when people who have a complete lack of empathic ability are put in charge of caring for others.
    Until we realize the importance and proper nature of mitigating suffering, not just end of life suffering but the suffering of severely physically and mentally compromised individuals, we will continue to see cases such as the one you talked about. Instead of a society pointing the finger at the mother, this death is more her pointing a finger at society and THAT of course no one will take responsibility for.

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    1. Thank you for sharing your very poignant and probing story about your mother's death. I so very much respect what you say and what you do because you have walked this talk with Segev for the past 14 years. Our experiences with severe disability, near death, and fundamental human vulnerability allow for a look into humanity which is unique and perhaps not understandable to many people. The bonds form out of the nature of disability between parents and children are unlike any human experience which the universe provides people. We and our kids survive, we continue and hopefully we honestly share what we have learned with others. I always appreciate your insight!

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  2. Had to condense my above response! by the way the motto of my blog is"non nobis solum nati sumus", not merely for ourselves are we born, and certainly as the picture says, it should be seen as a disheartening failure if we die alone.

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    1. Again, I understand and could not agree more!

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  3. These issues are ever-present for many of us with older children. Were you to leave and take your son with you, no, I would not condemn. Religious proscriptions aside, whatever slippery societal slopes people fear or infer, there are circumstances in which I regard such acts as loving and highly moral, even heroic, decisions. I've never forgotten an interview I heard many years ago with Hanna Krall, author of Shielding the Flame, in which she described a pediatrician who, just before her small patients would have been removed from her hospital to Nazi death camps, went from bed to bed with doses of cyanide. Yes, dark stuff.

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    1. A, thank you so much for sharing your insight and your story about the death camps...it gives me great pause. Of course, parents of younger disabled kids and never confronted with these issues. As we age and our children age, our daily anxieties are replaced by fears that they may be alone...a very dark place, perhaps the dark night of the soul. Thank you...

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  4. Poignant, powerful, dark and the 'leave together' totally understandable

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  5. Thanks, Claire....and welcome to our journey!

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  6. I'm certain that no amount of grappling with these issues can prepare one to make that decision. Therefore, I completely understand and would never condemn what that mother did, and to those who do, I think four, concise words: shut the fuck up.

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    1. Agreed, Elizabeth, we are never in a position to read, know or judge the hearts and minds of those people who walking our path....

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  7. I can remember a few years ago here in Australia where a mother of a young boy with severe austism killed her son while he slept. She also attempted to take her own life, however, it was unsuccessful. I clearly remember how she was treated by the media, and how people passed moral judgement.

    My mind has been consumed by death and life after death lately, and there is only one thing I am certain of. I don't see how Ryley would ever survive if we weren't around. And I desperately hope he doesn't ever have to be in the situation.

    I can totally understand the actions of a parent who doesn't want to leave her child behind to experience pain and suffering.

    Great post. I can't believe you have written something that is something I have been struggling with this week!

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    1. Anna, must be the great synchronicity in our small universe. These are issues which are constantly in our minds as they are pieces of our journey ...sometimes they rise to the surface as a might phoenix. I believe it allows us to touch the basic fragility of all life and highlights our great need for inter-dependence.

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  8. Phil, I am filled with dread at the thought of leaving my disabled children behind. My solace is my eldest daughter who has already said that she would take on that role - and I know she could and would. Naturally I am guilt ridden over the prospect of that as well. However, it gives me great peace knowing that she would do the job so well - and that their lives would be happy and settled. That's the plan. There's no telling what life has in store for any of us and those circumstances could change. I can only just hope.

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  9. mhk

    Phil, I am filled with dread at the thought of leaving my disabled children behind. My solace is my eldest daughter who has already said that she would take on that role - and I know she could and would. Naturally I am guilt ridden over the prospect of that as well. However, it gives me great peace knowing that she would do the job so well - and that their lives would be happy and settled. That's the plan. There's no telling what life has in store for any of us and those circumstances could change. I can only just hope.

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    1. Marcelle,

      My daughter has also recently told us also that Adam would never be alone and I also share your hope and belief in that future, I can also understand and share your guilt ... thanks and warm regards

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    2. Phil,

      Thank you for doing what you do. I read your words and I feel the same thing I feel when I listen to a singer with a beautiful voice. What a gift you have and I appreciate that you share it with us. Just as I cannot carry a tune, I have a difficult time transferring my thoughts and feelings into the written word. But, I read what you write and I feel like I've been given a voice . . . one that other people might actually give a listen to, too! lol

      My son Andrew is 20. He is severely and profoundly disabled and was diagnosed with Spastic Quadriplegic Cerebral Palsy before his first birthday. I have dealt for two decades with the fear of losing my son. However, as he and I age I realize that my Dark Place and yours have the same zip code. The thought of not being alive or able to meet his daily needs fills me with absolute terror.

      I, too, am fortunate enough to have an elder daughter that says she will be there for Andrew if his father and I cannot. She says it and I know she means it . . . but it only slightly diminishes the fear. She loves him, but she doesn't LOVE him like I do . . . she knows him but she doesn't really KNOW him like I do. I know she would do her very best to provide a loving and caring environment for her brother, but Andrew is used to so much more than that. As much as he is a young man, he is so much more my baby. And she has babies of her own to love and take care of . . . so there again is The Guilt and The Fear.

      Along our journey together, my son and I have faced some horrible times. Watching him in unrelenting pain for months and months at a time, all the while with him not being able to just tell me what hurts. That helpless and hopeless feeling of seeing your child in pain that he can only communicate by heart piercing cries . . . there were many times that I considered taking us both to a place of peace. And, I can honestly say that if we find ourselves in that scary, dark place again . . . who knows . . . I won't have to worry anymore about that other Darkest of Dark Places. Sure seems like there should be another option . . . I'd like to see what's behind Curtain #3, Please!

      I apologize for being so long winded. This is my first time, so I pray you'll be gentle with me. :-)

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    3. Donna,
      Many thanks for sharing your journey with your son Andrew with us here. There is no such a thing a long winded because the emotions of our stories can never be expressed in a few words, years of accumulated feelings and fears could fill volumes in the library of life.
      I understand your story and your words and there is very little that we have also not experienced. I believe that we have learned about the nature of unconditional love in a way that many people have not...that is the gift of our children to us. Your experiences, even in our dark places, have allowed you to touch the sacred and to be able to share that with others.
      I have no answers but only the belief that the universe will take care of us , each in our very special way. We are not alone, as I am learning. Thanks!

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  10. The poor woman, I cannot imagine how alone and desperate she must have felt.

    A close friend of mine found out 9 months ago that her baby son has cerebral palsy. She comes from a very loving and supportive family and she is a very strong positive person. The doctors said her son would never speak or walk, he does both.

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    1. Thank your for your comments and for joining our journey, Vivian. I would certainly agree that the medical profession is often wrong and it is the love and devotion of caring parents which can achieve a miracle which is not understandable in the world of medicine.

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  11. Could we be clear on one thing? Elizabeth Hodgins was not elderly, not ill, and not in danger of imminent death. She was 53 and in good physical health. Her situation is wholly different from someone who knows that death is near and is afraid to leave a helpless child behind.

    She was suicidal. Being suicidal is quite different from being terminally ill.

    Having struggled with suicidal thoughts in my traumatized youth, I can say with some clarity that once I had a child, suicide was never an option. Why? Because my life is no longer my own. It is mortgaged to someone else. And so I think that the problem here was that Elizabeth Hodgins couldn't stand her life anymore and decided to take her child with her. Do I have empathy for people in so much pain that they see suicide as the only way out? Yes, of course. But I have more empathy for the young man who was taken along with her, who had a whole life in front of him.

    George Hodgins had a day placement. It was the same one he had been in since he was young. It appears that it was not quite the right one, in his mother's mind, but there is no indication that he was being abused or neglected there, and he was not facing imminent institutionalization. I have read comments by parents of autistic children who knew George and had spent years in the same placement with him. None had anything bad to say about the place.

    Those of us who have protested the treatment of this tragedy have done so on one basis: that all of the mainstream stories have shown empathy for the parent's feelings, desires, and mindset, not for the disabled person's feelings, desires, and mindset. It shouldn't be an either/or. It should be a both/and.

    And I don't think that anyone should STFU about these things -- especially us disabled folk.

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    1. Thank you for you for your insightful and strong commentary, Rachel. I am convinced that there are many aspects of this tragic situation which will never been known, nor will they be revealed through any source. We do not know, nor can we be expected to know, the hearts and the motivations of the Hodgins family. That knowledge and that judgement should be left to a higher power, if such a one exists.
      Reality, perception of reality and limits of vulnerability to life's burdens are incalculable. I know very little factual about this particular case, other than than which I have read in the media and other bloggers' posts. The truth is probably unattainable...all we can do is feel deep empathy and suspend judgement. The human psyche is so very fragile...my warmest regards and appreciation for your insights.

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  12. Rachel, while I appreciate your opinions and viewpoint, I maintain my personal wish that those who raise their voices in judgement about such excruciatingly sensitive subjects as these should shut up. I'd add that silence, reflection and deep compassion are called for rather than censure, argument and righteousness. My previous crude comment was not personal but rather a reflection of my growing general impatience and revulsion toward social politics and those who would cram their opinions and shallow insight on exceedingly complex human problems and predicaments.

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    1. Elizabeth, if my blog has a "like" button, I would click "like very much". Complex human predicaments should be free of judgement by society and individuals...perhaps sitting in silence allows the god of understanding and compassion to infuse our being!

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