First smile

James has a black footed ferret (Frank) as a comfort animal to squeeze while he is in bed and also to distract him from pulling on the tube that provides extra oxygen flow to his trachea.  Our good friend Kevin Corrigan sent me a pint sized Claude Monet (holding a brush) to give to James as a replacement for Frank, perhaps feeling that Monet was a more respectable totem to hold in a hospital bed.

I forgot to pack Monet on Saturday for our visit so I brought him out, first thing today.  Imogen and I had a terrifically late morning and afternoon at the house. We slept in and then, before we knew what happened to the morning, it was 3:30.  Subway trains were closed off due to construction so by the time we arrived at Mt. Sinai, James was already in bed!  He had a full day of therapy but he was awake and happy to see us.  I pulled out Monet and handed him to James.

James's face completely transformed into a smile.  It was the first one since being hospitalized.  He beamed and immediately reached out for it.  He thought it was completely silly but was absolutely delighted. He gave Monet a big squeeze.  I placed Monet next to Frank and Imogen clicked a photo to commemorate James's first smile.

James wanted to talk and asked me for pen and paper, then wrote "Tough day today--tough!" He also wrote, "Traich, what is it?"  It took me a moment to realize he was talking about his tracheostomy. The therapists must have mentioned his "trach" to him and he had no idea what it meant. I have explained his tracheostomy every day since he has been admitted to rehabilitation.  I drew him a picture of his head and neck, with a small hole in the neck, and explained the stepping down of tubes and that eventually, it would be removed.  He wrote, "This sucks! I want to be healthy again." He also asked when he would be going home.  I have a feeling that we will discuss these same topics repeatedly until he regains the capability that allows him to retain information.

Shannan, a swimmer friend of ours who has experienced recovery from a stroke, is a complete force of support for me.  She empathizes with James's recovery process and has been extremely helpful to me as an informed guide through the NICU and rehabilitation, similar to Virgil leading Dante through the inferno. She mentioned to me the term "premorbid" meaning, the state existing before the occurrence of a physical disease or emotional illness.  In other words, the James that I am experiencing now will never be the premorbid James.  There is no such thing as full recovery, in a sense, because there is a before and after with regard to his brain abscess and the damage that was inflicted on his brain and psyche is a complete unknown factor. Medical science does not address this ghost in the machine.

This may seem like a completely obvious thing but it is not really, in reality. Everyone has their own perceptions or interpretation of what a recovery process would be like as an experience.  All of James's friends and loved ones have their own personal relationship with him and have an idea of who James is in this life we all share together.  James's life has had an interruption that is a complete mystery to all of us because it involves damage to his brain. I am eager to meet this new James and find connections to the premorbid self. I am trying to remain free of expectations and support him as best I can in this new self.

He also asked me to take a shower. I like this desire to return to normalcy.  I read in his admittance papers that he was not allowed to wet his head due to the operation but I thought, perhaps a shower from the neck down might be possible. I asked the nurse and she explained to me that no water may enter his trachea because it would flow directly to his lungs. No showers until that trachea is back to normal. When James first asked me about the shower, I looked him over and he's so clean--it was not clear to me what was driving this desire. I asked him, "Have you had a bath--you look really clean, Jim?" He shook his head no.  The nurse was a little peeved with us. I think she thought I was trying to insinuate that he was not being kept clean. She told me, "He receives a bath in his bed every day."  I tried to make light of it and told Jim, "See, I thought so, you look really good."  He waved me away with his hand and the nurse began to gather her things together to give him a wash up. 

Who knows what sort of mischief he cooks up when he is on his own.

Tomorrow, I return to the office in the morning. I am feeing a little dread already. I am starting to feel overwhelmed, knowing that we have to move and everything that will entail.  I also feel the weight of the unknowing on my shoulders and it's such a heavy load.

Imogen and I ran in the rain from 99th Street and Madison to the working subway station at 87th and Lexington. We were laughing, getting soaked--no umbrella.  We ducked into a small deli, the only store open on that stretch of upper east side on a Sunday night. It was a real closet of a space!  I looked up near the ceiling and there were various umbrellas for sale.  I spied one for $8.00 with a wooden handle, not so bad.  I pointed at the umbrella to the deli man and he said, "Twenty dollars." I could not believe it.  I told him, "It says eight dollars right on it!"  Imogen was embarrassed and said, "Mom, please!" I said, "What, come on, it's not $20.00 it's $8.00!"  The deli man reluctantly agreed. Imogen added a bag of popcorn and he said, "Ok, nine bucks."

It was cozy riding home tonight and finally putting the key in the door.  Our downstairs neighbors were cooking something delicious.  I love this place.  Hearing the rain falling outside as I write this and the chilly smell of wet leaves flowing in through James's studio window, I feel a slight despair of having to leave this place.  I have such fond memories of waking at 4 a.m. to nurse Imogen as a baby--the hush of the neighborhood, the aroma of Peter Pan donuts.

Better get to bed.  It's 10:30!

Peace out and snuggle down to the pater of raindrops Brooklyn.