Showing posts with label cystic fibrosis. Show all posts
Showing posts with label cystic fibrosis. Show all posts

Friday, June 3, 2011

Shine On, Joshua

"With all your science - can you tell how it is, and whence it is, that light comes into the soul?"
-Henry David Thoreau




Joshua James Schoenhoff
1986 - 2011


The Cystic Fibrosis has died at last.
The light from Josh will shine on forever.



...And when the night is cloudy, there is still a light,
that shines on me,



shine until tomorrow, let it be.


I wake up to the sound of music,
mother Mary comes to me,


there will be no sorrow let it be.


Let it be, let it be, .....


Tuesday, May 31, 2011

Delicious Ambiguity

"I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious Ambiguity."

- Gilda Radner

Circle Limit - M.C. Escher

What an amazing way to look at the changes presented to us in our lives. To think that Gilda was able to articulate this idea so beautifully as she was immersed so suddenly and deeply into the treacherous waters of cancer is a testament to her shining soul.

Sometimes welcome, sometimes despised, Change comes. It can stalk us for days or weeks, or it can assault us suddenly. It may be heralded by great joy, or preceded by angry tears.  Still, it comes, uncaring and even completely unaware of our personal needs or desires.

Change comes. We cannot control it, we cannot avoid it. We can only hope to experience each moment as a sort of delicious ambiguity.

Our beautiful Young Man will soon be released from his tethers to this world. This is the most unwelcome of changes to all of us who love him so dearly. The only ambiguity is in knowing how truly delicious it will be for him to breathe free for eternity.


Wednesday, May 18, 2011

The Limbo of Things

"Dreams are excursions into the limbo of things, a semi-deliverance from the human prison."
- Henri Amiel

The Dream of Solomon, Luca Giordano, Oil on canvas, 1693
Museo del Prado, Madrid, Spain


Limbo: [14th century. < Latin, "on the border (of hell)," form of limbus "border, edge:]   
in limbo - in a state of uncertainty or of being kept waiting.


That pretty much defines the situation today. Everyone is on 'the border of hell' and in a state of uncertainty. None of us, though, can know what is going on in the heart, mind, and soul of our young patient.


What is happening during this medicated coma?  Is he feeling his mother stroke his foot? Does he hear his wife tell him he's loved? Does he know how many people are praying for his recovery?


A very dear friend told me she thinks some heavy negotiations are going on right now between him and the Divine. I'm inclined to agree.  


To my mind, it might be something like the painting above by Giardano. He depicts Solomon, surrounded by spirits and angels, the seraphim and the cherubim, God speaking to him without words, saying to him, "Ask me for whatever you want me to give you." (I KINGS 3:5-15)


And now, anyone who knows the young man lying in a coma right now also knows how funny that image would be to him. He may look as if he's slumbering peacefully, but if our young man is in any sort of discussion with the Divine, I'm guessing he's more than a little testy right now.  In fact, it's probably more like an angry debate between two adversaries.


I can hear him now.


"Are you crazy? I just got married a few days ago. I have a beautiful wife and great parents and stepmother and brother and a nephew I've never even held yet, not to mention a hundred other loving friends and relatives who want me here...I demand to know the meaning of this!"


The truth is, our young man is a little irreverent. That image is fine with me, too. I do hope he and the Divine can come to some sort of agreement soon.  And if there is some meaning to this experience, may it reveal itself soon, too. Please. 


Because for his family, this limbo is...well, like waiting at the edge of hell. 


Amen.


As I thought about the music selection for today, it came to me that the 'negotiations' going on day and night might be something like the legend of Scheherezade, the Arabian bride who kept her king distracted by telling a story each night for 1,001 nights, thereby saving her life.


This is Rimsky-Korsakov's 5th movement of "Scheherezade" with Sergey Levitin conducting the Kirov Orchestra. 


I should make it clear that I imagine the cymbal clashing and thunderous roars coming, not from The Divine, but from our young man.


The lyrical strains of the violin and strings seem to be The Divine offering comfort and peace to him...come what may.


Let the debate begin...  


Tuesday, May 17, 2011

The Exquisite Hour

"When we have done our best, we should wait the result in peace."
- Sir John Lubbock


Woman in White, Pablo Picasso, 1923
Oil, water-based paint, and crayon on canvas
Estate of Pablo Picasso
 


My family is in a waiting period right now.  At this moment, we do not even know the path that we must travel, but either path will be difficult. 


A precious young life hangs in the balance, awaiting the miracle of a double lung transplant. Time is of the essence, and yet we know we cannot pray for tragedy to befall another family.


My heart aches for this young man, his wife, his mother and father, and his brother. No one should have to endure this pain. 


We can only pray for strength to endure either path. 


A gift arrived today from a dear friend, Tess, the brilliant poet from
 Life at Willow Manor
and with her permission, I share it with you. Thank you, Tess. 


It's not the magic of a simple answer to the unbearable question, "What will happen?" but serves as a peace-giving interlude while we wait for the path to unfold before us...as we await the exquisite hour.


This is soprano Susan Graham performing" Reynaldo Hahn's "L'Heure exquise". This composition is set to the poetry of Paul Verlaine, who reportedly wept when he heard it first. Pianist Roger Vignoles provides the accompaniment.

This composition is lambent with peace and hope...something precious and rare in hospital waiting rooms around the world. 


I dedicate this to all those who wait today. 


Translation of text:
The white moon
Shines in the woods;
Each branch
Share one vote
Under the arbor ...
O beloved.

The pond reflects,
Deep mirror
Silhouette
Black Willow
Where the wind cries ...
Dream, it's time.

A vast and tender
Appeasement
Seems to descend
The firmament
Iridescent as the moon ...
It is the exquisite hour.