Our bubble

My feet were completely soaked since I was basically wearing sponge shoes this afternoon on my way to the hospital. I made a stop at the local drugstore near Mt. Sinai and bought some plastic flip flop type sandals and an electric razor for James--I did not want to walk around the gym in squishy shoes, possibly causing a water hazard for the patients.  It made me slightly late. I caught the tail end of James's physical therapy session which was focused on preparing James for those future thirty steps up the stairs of our apartment.  Nehal told me they did at least ten extra steps today over the thirty.  She had set up a short platform for James to work on initiating the step down for himself.  I am amazed how mobile he is now--an improvement from just 24 hours ago!  Nehal said the chair's days are numbered.  He did not even have the wheel chair in the gym--he walked down the hall with his walker.

Once back in his room, James had to use the bathroom and stood straight up from his wheel chair as I raced to grab the walker.  I said, "Don't you need the nurse for this?"  He came right back with "You're here."  I complained, "But I do not know how to spot you...." but he was already in the bathroom.  He told me that I had better get used to it because this was how it will be at home. He was so feisty today, pretty confident and at ease. He walked over to the sink to wash his hands!

Then, he just put himself in bed.  I was astounded.  Later, he admitted that he's scared to come home--the transition seems daunting. I think he may have forgotten how he exists at home. It has been the goal he has been working toward, but every day that he improves and the entire staff of rehab are excited by his strides, he is closer to the realization that he will be on his own, without them.  James mentioned that Nehal may be the person that comes for the visit at our apartment to figure out if it's viable for him to recover there.

The speech therapist wants to try electric stimulation to James's neck so I had to carefully shave the area above his trach hole. James suggested buying the electric razor since the therapist had doubts if the nurses would allow James to attempt shaving himself with a regular razor. I was not comfortable having James even use the electric razor on himself so I had a go with it.  We both felt a little giggly about it. 

As I prepared to massage his feet, I asked James what sort of music he wanted to listen to--he shrugged his shoulders. I offered, "Hey, what about that great Ethiopian pianist that Matt played for you at Bellevue."  He did not recall Matt's visit at all so I thought, oh, wow, great, I get to introduce him to this music now--he'll love it. I found an hour length album on youtube and turned it on.  The solo piano music filled the room--I knew that it would launch him directly to his living room growing up in San Jose--his family house on Bright Oak Place.  The light and time of day were exactly the setting for a particular memory that I knew James would tap into--he would often play the piano by himself as a teenager, improvising. 

He was listening intently to the music and he declared, "This is the best I have felt during my entire stay in the hospital. Right now, this moment."  When I finished the massage, I brought out his painting things and told him about my Cezanne's wife idea. He was game.  I took a pot of violets that were given to him as a gift and held them in my lap, posing in a chair across from him.  The music played on and I confessed to him that I was struggling to stay awake. He said, "Yeah, this music is great."  I asked him, "Does this remind you of Bright Oak Place?"  He grinned, "I miss having a piano. I want to play a piano." 

I told him we should get a piano. He added, "Yes, in a kit house in the woods."  I said, "With baby goats and chickens?" He said, "Solar power, compost toilets, and a windmill--we'll be totally self-sufficient." 

All James wants is our bubble--a place to make work.  I asked him, "I have to bring my books....." and he said, "I will build you floor to ceiling shelves."  He continued on with his painting, the music floated around the room and we were both really content.  The nurse stopped by to take his blood pressure and told us she would do it as quickly as possible so as not to disturb us. 

It was a short respite.  I was back out on the street in my now freezing cold shoes, making my way back to Brooklyn through the evening rush hour.  A message was on my telephone from the insurance company regarding my Family Paid Leave application. I will have to give them a call tomorrow. I am keeping my fingers crossed about that since it appears that I have run out of personal days at my job and my salary may be cut due to the part-time aspect of my hours there. I am grateful to hold onto the job but I would be lying if I said I did not feel a loss of humanity today--the realization that I am simply a replaceable employee that is not doing my job.  I know this about the world I live and work in but it's still disappointing on a personal level. 

James does not need to know about any of this though--he's busy learning to walk up and down stairs again. Who knew that carpet is dangerous!  I showed Nehal the photos of our staircase and she was bummed out by the carpet.  It's easier to slip down stairs with someone learning to walk down them again--right angles are better than soft edges. I find myself looking at everyone's feet and walking styles these days.

Treasure your flow and ease as you walk around in the world tonight!