Back to the future

James was bright again today, to my relief.  He was exhausted by his physical therapy but was standing up against a table when I entered the gym today.  James's physical therapist is of the opinion that James has a good command of the mechanics of walking with regard to his legs.  His weakness now resides in his trunk, keeping his shoulders back, chest out, hips centered, and head up.  James's brain is directing him to favor his right side since the left is weak. His physical therapist wants James to outwit his brain by teaching it to ignore the signals and restrengthen the "lost" left side.  To strengthen his trunk, she wants to focus on standing this week and then, next week he will put on the robo-suit which will move his legs in a coordinated effort that will balance and center him in his core.  It all sounds great and exciting.

He has been taken off the oxygen and no longer has the tether of the oxygen tank to follow him around the gym.  He is a step closer to being free of the machines.  James has the cap on this trach and is capable of speech, when his mind allows the thoughts to reach his mouth to verbalize.  He has that gap from the spark of the response to the actual forming of words. James finds this particularly frustrating. The pause to grasp the word is similar to a stutter--he searches with his lips moving to form the word but at times, the word does not appear.  It tires him out and disappoints him.

I brought up the visitor question yet again because he had a wonder jam session with Charles and Paul on Sunday night. He described their encounter as "cool" as opposed to the frustration of being unable to form words which "sucks."  James confessed to me that the reason he does not want visitors is that he feels humiliated. He is embarrassed by his appearance, lack of conversational speech, and his inability to swallow on a regular basis which causes saliva to gather at his lips that he must wipe away with a tissue.  I told him that his friends love him and do not care about these superficial maladies.  James has his pride and sense of self.  I sympathize.  He is also in a great deal of pain and does not want to have the extra burden of masking that pain in front of others. He wants to feel at ease in the present moment and having visitors would cause him to create a false front or attempt to hide what is essentially his sense of self right now--it's too difficult of a task to form a persona on a mind that is becoming.

I asked Charles to visit James because I was unable to travel to the hospital with a sick child at home.  I asked James today, "What if another occasion arose when I was unable to visit, wouldn't it be pleasant to have someone else here with you?"  He rejected the notion. He does not want anyone beyond me.  Today, he even asked the nurse to leave the room for privacy so that he could pee.

James and I have joked in the past that we were one person with two heads.  We have been together with one another for so long, I do not think he feels odd having me with him. It is not an intrusion.  Anyone else in the room makes James self-conscious.  I am not a witness to his humiliation because he is a part of me.

In the gym today, I heard a familiar voice just to my right. I looked over and locked eyes with a notable actor.  It was slightly surreal. I did the typical New York thing of looking immediately away as if that person was not famous.  James was busy working with his occupational therapist on a cognitive drawing exercise and did not see the actor who was being assessed by walking over a short staircase.  This actor is known for having Parkinson's Disease.  Later, when we were back in James's room and alone, I had to tell him who I saw in his gym!  James's eyes grew quite large and he smiled.

His occupational therapist told me she wants to film James because she cannot believe the pace of his progress. She said, even two days from now, he will be surprised by the difference in the gain concerning his efforts to rise from his bed in the morning--the grace that is flowering over time.  She was hinting that she would like me to film because they are not allowed due to patient privacy. I will have to ask James.

James and I spent some time staring into each other's eyes. I am not sure what he's thinking and if he's struggling to form words or if his mind is simply spinning.  I asked him, "Are you thinking of the past, present or future?"  He was quiet and then said, "Future."  Just hearing that word said out loud unlocked whatever was blocking him and he easily began to say sentences strung together about going home--thoughts about getting in and out of bed, having help to get to the bathroom, understanding that he will need caregivers--getting up and down the stairs. He was almost breathless in the stream flowing out. I told him that our beloved friend downstairs, Dan, offered to help carrying him up the stairs if need be!  Jim rolled his eyes at the ridiculousness of the offer because James is well aware of how difficult it is to manage his big, tall body.  It takes two people to get him in and out of bed. His mind is residing at home, lovingly relishing the various aspects of his room and the familiarity of his belongings.

He wants to travel back to the future.