Time

James is having difficulty with the conception of time.  Right before he fell ill, we were joking that our lives felt similar to the film Groundhog Day because we were experiencing a template of the same hectic day over and over again--fast-forward-intertwined-with-rewind experience of time. There was a slight variation on the theme but basically, each day was rushing past us in this familiar pattern.   James has hit the pause button.

Imogen and I arrived at the hospital to find James laying on his side with a gigantic rubber fist on his bed.  I thought it was the next level in hospital mitten and wondered if James had attempted to chip away at his leg casts last night.  James explained that our friends Milo, Laura, and their son Horatio had stopped by for a visit and the fist was actually a gift--it was a beer can holder.  I laughed!  Horatio is the same age as Imogen. They grew up together in Greenpoint before the family moved to lower Manhattan a few years ago.  Milo and Laura had the craziest themed birthday parties for Horatio each year in which the gift bags were full of insane boy treasures--stink bombs, plastic zombie body parts, elastic vomit and poop.  We never knew what would happen at the parties and looked forward to them every year. 

I asked James how long he had been lying on his side and he told me, "oh, for hours."  I immediately straightened out his legs and made adjustments to his pillows.  I gathered his laundry together to take downstairs to wash when the nurse and attendant came in and the attendant said rather flustered, "Why is James on his back, we just adjusted him."  The attendant explained that the visitors had departed a few minutes before I arrived and they had checked in on him at that time and bolstered him. He had been on his side for less than twenty minutes! 

James looked over from the bed at me with wide eyes, surprised in disbelief, and animated since we were discussing him and his errors about time.  The attendant said, "You cannot go by what he says!" which is the first time that has been said in James's presence.  I usually joke and call him the "unreliable narrator," and the nurses have been quick to correct me by saying, "we always listen to the patient's requests."  I could see that the nurse was slightly irritated by the attendant admitting as much in front of James.

Although James enjoyed the visit with our friends, I could tell he was cognitively exhausted.  I saw his sleep schedule from last night and he slept straight-through--eight hours, albeit, he started at 7:00 in the evening so he woke up at 3:00 a.m. James is disoriented about the passage of time--he feels lost, especially this weekend since he has no physical therapy scheduled due to the casts and no structure to his day similar to the week.  He was feeling anxious over the fact that I will not be visiting him at all tomorrow since we will celebrate Imogen's birthday with a small outing to a sky-diving simulator and then, share cake with friends at our house later in the afternoon. I could not squeeze in any time with him. 

He seemed forlorn with the idea of having Sunday to himself--stretched out in limbo time since he has no way to judge or mark it passing.  Horatio managed to ask the nurses to bring James a bit of ice and they complied despite the fact that James is on a no-water or ice restriction except for speech therapy sessions.  James asked me immediately for ice when I arrived which had melted slightly. I told him to go slow and he hungrily drank from the cup and ate a large bit of ice.  It made him cough.  I explained to James, once again, that we really need to follow the rules of rehab because we do not want him to get sick. He was peeved with me a little and said, "You make me feel paranoid." 

This was saddening to me because it plays into our past a bit.  James would not like it if I made him feel worried or guilty about, say, not looking after his health properly. Imogen calls it "yucking my yum."  I would scold him for eating big bowls of ice-cream or suggest that he try to get off coffee because it was causing him to have upset stomach and migraines. 

In this case, with the water, it was not a matter of paranoia.  If he inhales water or food particles into his lungs, it could very well lead to a serious complication.  He is not swallowing properly and it was proven in the test they gave him. It is a fact.  Everyone has explained this to James but it is not something he is able to fully comprehend or retain in his memory. Instead, it feels like irrational fear or punishment that we are trying to lay upon him.

I meant to bring one of my anatomy books from massage therapy school so I could show him the inside of this throat and what we mean about the water flowing down the wrong pipe. I will bring it with me on Monday.

I also meant to bring his electric beard shaver--his face is becoming a bit scruffy and since he is given bed baths instead of showers (due to his trach), the skin underneath his beard seems dry and flakey. Probably too much detail but I decided to give his face a wash with warm water and a facial cleansing wipe.  He watched me and held out his chin, smiling.  He knows how to charm me in an instant.

James is still uncomfortable with Imogen in his room. It is a mutual feeling between the two of the them so it becomes a feedback loop. They both feel better when Imogen is in the day room and I am sitting in with James.  He likes to smile and wave to her when she is leaving but there is a strange anxiety he displays when we first arrive, before I take her to the dayroom.  I think it may stem from the fact that he feels instinctually flooded with daddy dharma. I think it is this pull to grasp what is out of his reach at the moment, it is the ungraspable--he knows that his life responsibilities are near, that there are facts that he cannot quite recognize or grasp, and Imogen is a huge totem to it all.  This is my theory about it.  I could be completely wrong.

I give them to each other in little doses and explain to Imogen that she should not feel that he does not love her.  She understands and sympathizes with his inability to be a father right now. She gets it and I am so relieved.  He needs to understand himself first and then, expand that circle out to include father, teacher or even, friend. 

As I was getting ready to leave, he really looked pretty downhearted. I asked him if he would like someone else to stop by tomorrow and he locked my eyes with his own and said, "No, no one!"  He told me that he wants to sleep away the day tomorrow so Monday will arrive and he may begin his rehab work--they will cut off the casts and he will walk again. 

I bought him a small radio that he will be able to play for himself.  I am hoping he will recall how much he enjoyed listening to NPR and it will help him to mark time in a way through blocks of shows that he was once familiar with or the cycle of the news segments. 

It is ironic that this is exactly what we were wishing for--to step outside the strictures of time and our schedules!