Life In Slow Motion

When you get admitted to the cancer center they do this test on all the patients to assess their cognitive function to get a baseline.  So then when the patient is all looped up and spaced out on drugs for pain or sedation, they can determine how far off the curve you have fallen.  This is Nick's first one of these assessments.  This is the second page of the test.

They would hand him the paper and say, "do what it tells you to do on the paper."  So of course, he would close his eyes.  Then they would have him trace the shapes on the paper and then draw them.  Then they would ask him to write something.  Nick would always write something and hand the paper back to the nurse.  I never knew what he wrote.  I always wanted to ask him what he wrote, but I never did, feeling like an intruder in my own child's life or like it was some kind of invasion of his privacy.  After Nick would hand back the paper, the nurse would always read what he wrote.  Sometimes looks were exchanged or the nurse would comment on what Nick had written.  After several of these exchanges,  I sometimes wanted to jump up and tear the paper out of the nurse's hand and say, "Let me read that...he is my son. I should get to read what he is writing."  But I never did.

Instead, when I returned to Hopkins after Nick's death, to go through all of his medical records in hopes of bringing a lawsuit against the hospital, this is when I found all of these papers!  This is when I read them for the first time.  As I went through the reams and reams of paper which represented the horror of his life with cancer and the months and months of his life he spent there...this is when I found the papers, this is when I read what Nick wrote with each new admission back to hospital.  These admissions always felt like defeat, like a battle lost, like another step toward losing the war.  Nick hated to go back, he hated to be admitted and he never liked this stupid test.

I have been meaning to present these in the order that Nick wrote them over the timeline that they were written.  I am now finally doing that...even now it is so painful to see his words, to see his handwriting, to know his thoughts and wishes, and worst of all to know that none of them were ever fulfilled.  They reflect the beauty of his heart, his spirit, his soul...the essence of who he was in every way.  To me, they are nothing short of heartbreaking and gut wrenching.

This is the first one....this test was done on the second day of that first fateful admission, when we first found out Nick had leukemia.  He was too sick to do it on the first day.  His words...

"I wish I was at the sea."

“My soul is full of longing for the secret of the sea,
and the heart of the great ocean sends a thrilling pulse through me.” 
~Henry Wordsworth Longfellow

“There was a single blue line of crayon drawn across every wall in the house. What does it mean? I asked. A pirate needs the sight of the sea, he said and then he pulled his eye patch down and turned and sailed away.”   ~Brian Andreas

I feel like my life continues to be laden with grief, mourning and sadness.  I stopped writing because I really had nothing new to say.  I still don't.  The melancholy of David Gray's song touches me and I feel like my life is in slow motion somehow, and yet, the time of my life runs past me, as if mocking my fate. It is difficult to explain the abyss, the quicksand, the darkness....I am doing the best I can, which most days does not seem near good enough. I let others speak now, for they do so with more eloquence and grace.  I have no energy for such things it seems.  But the calender forced my hand on this one and so it begins....