How was the game?

I spent this morning at Imogen's soccer game on a field by the East River in Brooklyn. It was beautiful weather, if not even a little too warm, and the team was shaking off their winter shells.  After the game, Imogen and I stopped off for strawberry smoothies and headed up to Mt. Sinai.  When I entered James's room, I asked, "How are you doing?" and James gave me a thumbs up.  I had run into his occupational therapist on the street who told me they had worked all morning and that James was done for the day. Weekends have a much lighter schedule.

I apologized to James for being delayed and that the reason behind it was Imogen's first game of the season. I anticipated a blank stare back at me with no response and instead, James immediately mouthed, "How was the game?"  I did not quite catch it the first time he said it but then, he repeated it very clearly. I was floored by the perfect timing of his conversational response.  No lag time at all. I told him, "Imogen's team lost one to nothing but it was a pretty exciting game."  He raised his eyebrows as if to say, "Oh well, cannot win them all."  Imogen asked to wait in the family room (there is a piano and books!) which is around the corridor from James's room.

Today is laundry day at Mt. Sinai. I was told that the families are responsible for washing the patient's clothing and that the machines were free.  I took his smallish load to the laundry room, taking Imogen along with me. I told her that her father had asked about her game and was sitting in his chair--that she should come into the room and say hello. She agreed.  James looked up at her and waved.  Imogen felt comfortable enough to spend the rest of our visit in his room (although, part of the time she spent playing games on my laptop).

James was still a bit unclear why he had to remain in his wheelchair if all his therapy was done for the day. He also grumbled about keeping his shoes on. I explained that it is part of his therapy to be sitting up in the chair, awake. I explained that if he was in his bed, he would be asleep and lying down--not initiating any movement or using any muscles to keep himself upright. I reminded him again that he is in rehabilitation and every moment of it is work. He has a new job now and it runs the length of the day. He asked for pen and paper.

I am surprised how well he is writing. It was even more legible today. He only writes to complain, though. He told me that he's chilly at night and wants a comforter.  I told him I would tell the nurse before I left for the day. James sat there looking at me with his big blue eyes.  I wanted to find something on television for him to watch to keep him awake and amused.  He then reached out and pushed the button for the nurse. I asked him, "Why did you call the nurse, I am right here, what do you want?" and he pointed at his message to me about the blanket.  I said, "I told you I would tell her before I left!" but he did not trust me to do that--he wanted to be sure of it right then and there.  The nurse came and I explained that James wanted an extra blanket for the evening and she went out and found one directly. I turned to James and asked, "Are you satisfied now?" and he nodded with a bit of glee. He's a funny guy.

I think it is important to frame James's rapid strides in the last few days with his state prior to admittance to Mt. Sinai. Everyone on the rehab team has told me that they read his NICU case notes and they know the degree of James's disability and that he was basically a barely responsive man that was fighting to live just a few weeks ago. He almost did not make it into acute rehabilitation. I have to reiterate this fact so that my excitement about his current state has context and is not misunderstood. James has a long way to go in his rehabilitation. His muscles have atrophied and it will take some time to rebuild them. Although I am optimistic regarding his recovery, I do not know if he will indeed make it back to us in the state he was before his infection.  Similar to intensive care, I have to take his recovery one day at a time.

James is also receiving medication that helps him to be "brighter" and turned on so that he will be able to focus and be awake for therapy.  I am grateful for the meds but they do have side-effects and I want to be as cautious as possible regarding his care.  I have noticed the difference and I think it is a necessary part of his recovery.

Imogen and I indulged ourselves a little today after the visit with James. We had an early dinner at an upper east side diner, strolled a little through Central Park eating ice-cream cones, purchased a gift at the Met for Imogen's vice principal who is retiring, and ended the evening by viewing the new Wes Anderson film, the Isle of Dogs. James would have really enjoyed it. 

Before we left him today, I was surfing around his television trying to find him something to watch. He was giving me thumbs down until I found NHK, the Japanese television station. I said, "Oh, Jim, Japanese TV!"  James and I spent six months living in Moriya, a town outside Tokyo.  At night, we often snuggled down together, drank Japanese beer, and watched ridiculous variety television shows, made all the sillier since we did not speak the language and made up our own interpretations of the shows. I thought that he would find a great comfort in it and he gave me the thumbs up.

As Imogen and I walked to the elevator, Imogen asked me, "Mom, are you sure he wanted to watch that or was it something you just put upon him."  I told her, "No way, Imogen, your dad will love watching all that Japanese T.V., it will be the most comforting thing to have if he has to be in there alone--he will time travel back to the days in which he felt very safe in Japan." 

I hope he dreams tonight of a ride we took on our bicycles in Moriya one night. Moriya reminded us, strangely enough, of the suburb we grew up in California called Almaden. Moriya was considered a bedroom community or commuter suburb of Tokyo.  A high speed train was being built between Moriya and Toyko which would make the commute only twenty minutes (it was an hour and a half by car).   It was a similar distance from Almaden to San Francisco.  Moriya still had small farms around it but it was rapidly changing to suburban type sprawl. Moriya felt like a little silicon valley in the making, albeit, Japanese style.

James and I regressed to our childhood for those six months--no jobs or financial worries as James was provided with an artist grant and only a few obligations beyond making work in the studio--James painted while I read, wrote a little, and explored the town on my bicycle.  We would often meet with the other artists from the residency for dinner and drinks. There was a large harvest moon one crisp fall night. The farmers were burning leaves in their fields and we were slightly drunk.  We laughed and rode our bikes beside the fields feeling free and full of life.  I am hoping that he falls asleep hearing Japanese being spoken and it allows him a passage back to that delight.