Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Saturday, December 4, 2010

A Level Playing Field, Ya Think?

       Many people (friends, family and most of the world) assume that the playing field of human relationships should be level and that everyone should play by the same rules, adhere to the same conventions and that precise and measureable reciprocity should guide all behavior.  Well, mostly this is true; but, in some cases, like ours, it's an untenable myth.
         When you carefully examine why people who offer a helping hand in the beginning  often disappear, it can sometimes be attributed to a perceived injustice "you didn't take our advice", or "well, you could pick up the phone, too" (that is between 4 hours of  manual ABR, 10 hours of machine ABR, diaper changes, pureeing foods, lengthy feedings, appointments and a few precious hours of sleep), or "you're always welcome to visit us at our homes" ( but is your home wheelchair accessible, nearby, has a hospital bed, nebulizer, suction machine and a case of enemas?).  Somehow when taking your child to a movie down the street is a major production, traveling many hours in a wheelchair van with half the house packed in back just doesn't seem reasonable.  But, calling, visiting, etc. is something we should do regularly if the playing field is to be level?  Gee, it's not!
        Also, when you examine why some old friends disappear and you and your disabled child are no longer their social good-will project, you hear the same type of dribble which always assumes the playing field is level.  Here are a few: "Well, you have a phone, too.", "This is too hard to look at, it's like Adam sees into your soul.", "Just so very busy.", "It's depressing.", "You have such a hard life.", "We don't know what to say or do."  And so it goes.  Thankfully, my South and Central American ABR comrades have assured us that this is a cultural, American phenomenon...or so I hope.
          After a time, you realize that the journey is lonely yet personally inspiring; disability exists only in the eyes of the beholder; and inability to move or speak makes for a pure soul, a contorted body is merely a temple of the source.  Few are willing to accept these realities and so they make up a "personally plausible story" why it's too hard to stay connected for the necessary years of care-giving, however long that may be.....authentic healing is a long, loving process.  Parents embrace the process because they connect with the deeper roots of love.

           Parents, siblings and disabled children have quickly learned that the playing field is never level.  If you are married or in a relationship, have two kids who walk and talk and are college material, have a house and two cars and a white picket fence, and a steady job, then you can ascribe to the level playing field theory.  The usual readers of this blog can't simply adhere to that belief.  We are a bit wounded, a bit opinionated about what works for our kids, a bit cranky to everyone but our kids.  We stay home a lot (not out of choice), don't have the energy to chat relentlessly on the phone, go to socials or cocktail hours, take classes or host potlucks.  We do, however, make it through the day (barely); we love our children and are episodically cranky to our pets.  The only humane response to folks in situations with serious life challenges is to meet them more than half way, to have little expectation of reciprocity.
              One of the beauties of existence and a proof that the source exists occurs whenever a person commits to befriend a disabled person, a widower (another category of humanity often confronted with disappearing still married friends), our terminally ill brethren, and our extreme caregivers.  A commitment is made to never  abandon these friends or family, no matter what.  A consistent, on-going, never-forgetting kindness of commitment is the highest form of human relationship; as long as the expectation of reciprocity and the level-playing field concept is not demanded . The giving is pure.  Frankly, all you can expect in return is appreciation, a warm reception and a periodic bout of crankiness...
             Adam's words (through his friend and clairvoyant) are  "Love means being here when you don't have to...."   Change is possible, a new consciousness is evolving...there is never a moment when this cycle of fear and a clinging to old behaviors cannot change.  Opportunities present themselves to us on a daily basis.


  1. I so agree, particularly Adams definition of Love. Well we're not going anywhere, I know we're thousands of miles apart, but your always in our hearts. (unintentional rhyme) - our "social lives" has changed too with 3 hours of manual and 12 of machine. The road/journey is lonely, your blog just puts all my feelings into words, and makes me feel so much less lonely. Love Oatie's Mum x

  2. Personally I understand others drifting away or meekly making what may seem like excuses. The situation you face is difficult and requires a level of dedication few can understand. Choosing to instigate a particular method of treatment which in itself is eclectic and demanding may seem strange or extreme to others who then feel that the difficult situation has made YOU the stranger. After all, nothing has changed in their lives, but everything is different in yours.

    I often wonder how much my focus on keeping my son alive has a part alienating all but a few. Then again, I am unforgiving when it comes to expectations of those that purport to be there for my son.

  3. sometimes
    it feels like
    if you haven't gotten to the other side of
    a catastrophe
    or near death or some such enormous challenge
    "life" as we know in america
    is total delusion
    finding the deeper roots of love
    as you say Phil
    the deeper root of truth
    and insight
    seems to be
    is the only point to human existence

    it takes perseverance not to get stuck
    in delusion


Related Posts Plugin for WordPress, Blogger...