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Arrogant Hope or Utter Despair?

Sunday, January 2, 2011

Suffering from Cystic Fibrosis is a microcosm of the human condition.

I realized this tonight when I ran across this quote:

"To be human is to struggle between two emotional magnets.  On the one hand lies the temptation to give in to a sense of total abjection.  After all, humanity is mortal, is limited, is feckless, is a history of disasters.  On the other hand, there hovers in an unbounded awareness of what it means to be human, the probability of sinking into unbounded arrogance.  Humanity is, after all, also a bundle of beauty, a reservoir of ability, a possibility unlimited." (Joan Chittister, "The Liturgical Year"*)

That's exactly how I feel with CF.  I am forced to live between two emotional magnets with regard to Cystic Fibrosis.

On the one hand, I face despair in the losing of my son to a disease for which there is no cure, a disease that will slowly suffocate him to death.  It is a place where I could, reasonably, decide to give up.  Why fight a losing war?  Despite all my greatest efforts - all the vest treatments and medications - my son is going to lose his life to Cystic Fibrosis.

On the other hand, I face arrogant naivity that a cure, which will come just in the nick of time, will solve all of my son's health problems and take away the decay his body has already experienced.  Here I wrestle with arrogance.  Why consider the gravity of the situation when a cure is "just around the corner"?

Neither place seems safe for me to stay.   I cannot live at either extreme.

I do not know the future - will my son succumb to CF as he is expected or will my son overcome CF as is hoped?

I am left only to sit in the inbetween.  It's an uncomfortable place to be.  I am left to sit between abjection and arrogance.

This place keeps me from being able to fully cry from sadness of Bennett's situation (why cry when the future is not written) and from fully rejoicing (how can you rejoice that the future is bright when the future has not be experienced). 

Every day, I face this place in which I am forced to stay...during tube feedings, vest treatments, fears over germs and the administration of medications.  I cannot give up.  But I cannot really expect that it will change.

"It is a pitiable position, this inherent struggle in us between a sense of hopeless degradation and a posture of terminal arrogance." (Chittister)

And yet, this place - where I am - is exactly where God is.

"Only the awareness of a universe whose Creator is outside and above the boundaries of humanity can save us from either the curse of futility or the devastating consequences of self-satisfaction unfulfilled." (Chittister)

It is here...in the inbetween that I must surrender.  I cannot throw every part of my being into finding a cure (what if it never comes).  But I cannot curl up into myself refusing to fully love my child who might very well live past his life expectancy (who knows what children with CF born today will face in the future).

I must merely be present - trusting God.

"To know our place in the universe is to recognize that God is God." (Chittister)

Suffering from Cystic Fibrosis is a microcosm of the human condition.
Rarely do I think about the human condition but I think about CF everyday.


*a complimentary copy of this book was provided by BookSneeze for an honest review. So, here's my review: Man, this is a good book. It's well-written and offers some great insights into the value of the church calendar. As a protestant with no theology background, I found this book to be very helpful for expanding my insights and appreciation for this ancient practice. And, as the above indicates, the book affected how I understand the spiritual dilemma I face with my son's terminal disease.

One Response to “Arrogant Hope or Utter Despair?”

  1. Breck, you come across such great books. I'd love to have you send me the ones you most recommend :)

    ReplyDelete

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