Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Wednesday, August 3, 2011

We Are Sisyphus

      In 1942, Albert Camus, the French existentialist, wrote The Myth of Sisyphus.The final chapter compares the absurdity of man's life with the situation of Sisyphus, a figure of Greek mythology who was condemned to repeat forever the same meaningless task of pushing a boulder up a mountain, only to see it roll down again. The essay concludes, "The struggle itself...is enough to fill a man's heart. One must imagine Sisyphus happy."    


       In The Upside of Irrationality Dr. Dan Ariely describes an experiment that tests how people respond when the meaning of their work is diminished. The test condition is referred to as the Sisyphusian condition. The two main conclusions of the experiment are that:

  • people work harder when their work seems more meaningful;
  • people underestimate the relationship between meaning and motivation.
       This epic myth and Camus' interpretation resonate with me as the parent of a severely disabled child/adult.  Meaning is crucial to the ongoing commitment to care and to care with enthusiasm and commitment.  That care is clearly similarly analogous to rolling the rock up a hill, to making great progress and strides forward and to have the rock slip back down.  We balance increased comfort, increased development, increased presence with consecutive regressions...respiratory difficulty, spasm, contracture, rigidity.  The pendulum swings back and forth as scoliosis diminishes, hips sublux; as hips normalize feet rotate.  Today breath is normalized, tomorrow it is shallow and raspy, the next day, normalized.  Steps forward and steps backward.  The persistence of the journey must continue.  Our commitment to his therapy must be unwavering despite the soul weary residuals.  The force on the rock cannot be mitigated by circumstance.  Our meaning comes from the "work."  Nothing else matters.

In that daily effort in which intelligence and passion mingle and delight each other, the absurd man discovers a discipline that will make up the greatest of his strengths. (The Myth of Sisyphus)
   

  And, so, as parents of severely disabled children, meaning comes not from getting on with our lives; it comes not from making sure that we have a life; it comes not from closely knit circles of family and friends.  Nor does it come from great literary contributions to humanity, nor from scientific discovery, nor the accumulation of money and possessions.  It comes not from curing our son or daughter nor from having the world appreciate the "miracle" of our child, nor from teaching others the value of caring and the sins of indifference.  Meaning does not come from our advocacy or our advice to others; it comes not from sharing our wealth of accumulated knowledge of disability.  Our meaning comes from the unwavering, unceasing rolling of the stone up the mountain, day after day, year after year for as long as it takes.  We have a privilege of meaning that so few others have the opportunity or desire to pursue.



The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor.
The Myth of Sisyphus
The Myth of Sisyphus.
Opinions differ as to the reasons why he became the futile laborer of the underworld. To begin with, he is accused of a certain levity in regard to the gods. He stole their secrets.
The Myth of Sisyphus
The Myth of Sisyphus.


      
           We have the privilege of stealing the secrets of the gods ...that the belief of the gods was that there was no more dreadful punishment than futile and hopeless labor and their belief was wrong.  There is wonderful and powerful meaning which accompanies the rolling of the rock.  The gods were wrong and it is parents who daily care with passion for their disabled children that have proved the gods wrong.  We have discovered meaning and daily battle never to lose what we have gained and learned.  Our lives are our meaning because we have chosen our work with a fierce determination.  As Mary of Magdala spoke in her gospel, "...know ye not that ye are all gods?"

I see many people die because they judge that life is not worth living. I see others paradoxically getting killed for the ideas or illusions that give them a reason for living (what is called a reason for living is also an excellent reason for dying). I therefore conclude that the meaning of life is the most urgent of questions.The Myth of SisyphusAbsurdity and Suicide

       We are the privileged...the parents of the severely disabled.  We need not search for meaning.  It has been given to us as a gift.  We simply need to accept it.  What others struggle a lifetime to decipher, we have been given in an instant.  Embrace of the gift is all that is required.





   

9 comments:

  1. What a great post! I am going to put a link to this post on my blog, so that my readers can read this!

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  2. I will think about this for a long time. I particularly like this statement: "We need not search for meaning. It has been given to us as a gift." I realize, often, that I already "know" things by virtue of having and caring for my daughter -- this happened recently when I went to a class on Buddhism and mindfulness meditation. I "knew" nearly everything the teacher spoke about, "knew" the meaning already. And that IS a gift.

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  3. Great post. I am feeling more on the meaninglessness side lately, but this glimpse has helped. Thanks.

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  4. I love this post Phil, you are absolutely right xox love Mel xxx

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  5. It never occurred to me that I needed to decide something. For me there can never be another option;"many are called...."
    Even my mother, bless her, always says to me, "but what about your life?" The answer is always the same, "But Mom, this IS my life". Of course when others hear that, they assume, quite smugly, that because of my acceptance, there is no need to help.

    I remember reading 'The myth of Sisyphus' until I thought, 'such convolution!' and put it down. That was about 30 years ago but your succinct extrapolation is spot on, Phil. I would just add that we, the caregivers also suffer from the Cassandra syndrome.

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  6. Phil, I have never read this Greek myth before and found your interpretation of it really interesting. I often seek explanations of what we do - and this was an inspiring way of looking at it. I've always known that we're different and we're special or unique. I agree that we get tired and nobody else gets us - but I never feel that I want to stop pushing the boulder.
    Marcelle.

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  7. Yes Phil, you and Sharon have been given a gift. You understand so much more than others. You are evolved souls and caring for Adam is part of it for sure. How appropriate that you chose this story, when you and Sharon literally push the egg every day to help Adam!

    I feel honored to be one who reads the information you and Sharon share about your life. I also feel blessed by the blessing that is my daughter.

    Sending you and all of your lovely family hugs,

    Sue

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  8. Phil, I love this post. I love the "MEANING"...so powerful and true! We are privileged with this meaning that so many can not feel or even imagine.

    Hugs to all,
    Lisa, Chris and the boys

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  9. Thanks all for the great comments. It's obvious that we all share the "gift" which gives us a deep meaning and understanding of humanity which few are graced with it. It's a long "roll" but I am continually amazed and blessed to know so many people who continue on a daily basis to do what is right and exude that unconditional love for their children. You are all truly wonderful people who add to the positive energy which keeps the universe in balance.
    And Eric, so right about Cassandra: the ability to know and see the future, but to be cursed that no one believes you...damn Apollo, if she only gave into his romantic advances?

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