Our community

I spent today split between a morning visit with James up at Mt. Sinai and sharing the afternoon with Imogen as she prepared to participate in the PS34 eco-fashion show held this evening.

I have not really seen James wake-up and prepare for the day, although, his occupational therapists were hinting that I should see him rise out of bed.  He is learning to sit up on his own and swings his legs out of bed onto the floor.

Everyone should do a meditation tomorrow morning.  Upon waking, be mindful of your body as you make the transition of rising out of bed and then finding yourself standing upright on your feet.  Slow down and think about each movement instead of the spontaneous, effortless swing we all take for granted.  It is indeed effortless.  The older folks out there (including myself) may groan a bit upon reentry into the world of the standing bipeds but not much thought goes into the actual movement itself.  James struggled to move his left leg to the floor and it took several minutes with constant encouragement from Jack, his OT, to keep trying until he achieved it.

James slept only three hours last night. I agreed with the doctor to another trial of the sleeping medication this weekend. He's so exhausted and he needs the sleep.

James had a group therapy session today which was rather inspiring.  There were a variety of patients recovering from brain injury in the group for this particular session:  a man in his 50s that had been hit by a car and who did not seek medical attention until a week afterward when his family finally brought him in, a 60ish woman with a large, Frankenstein surgery scar along the length of her scalp who continued to smile constantly throughout the meeting, a 50-something man recovering from his second stroke, a quiet, elderly woman who had no physical manifestation of her injury, and James. The discussion for the day was the patients own insights into their recovery process. Car injury man did not want to be in the group and stated flatly, "I just want to get the hell home; this place is jail." Stroke man backed-up the notion of rehab as jail.  The moderator of the group was very respectful of acknowledging everyone's comments without redirecting or being condescending.  He turned to James for his thoughts.

James said rehabilitation was similar to preparing for a marathon. It was a lot of really hard work and training that was a long process but for an attainable goal.  The moderator loved this metaphor and wrote it on the large whiteboard wall behind him. Stroke man had earlier told his own story that had him squinting back tears of frustration and sorrow. He nodded to the metaphor of the marathon as James spoke and by the end of the session, after a body scan meditation lead by the moderator, stroke man stated that he was made to feel better by James's contribution of the marathon metaphor of recovery shared with the group

I wheeled James into his room afterward and said to him, "You see, you contributed to that man's recovery. He was feeling down, agreeing that rehab was jail, and you turned the conversation around and empowered everyone in the room."

I realized it was necessary for me to be there in the mornings. James was wheeled into group therapy by his occupational therapist and left there with the moderator. A nurse would have been called to wheel him back and no one would have followed-up on the opportunity to highlight to James that he made a difference not only in his own recovery but in the new community he has joined by being at Mt. Sinai. This is exactly the psychological encouragement he needs to battle depression.

At this evenings fashion show, I spoke with two teachers from PS34, Lisa Summa and Cynthia Hahn, that James truly admires, respects, and loves.  I do not think that's an overstatement.  James actually cares very deeply about everyone at PS34--it was a large part of his life for the past six years.  The picture of Imogen painting was taken at our house when we gathered friends and families together to paint the backdrop that was used for the stage at one of James's beloved Saturday Socials--a PTA sponsored event that was meant to draw the community together not necessarily to raise funds or advocate for public school education, although that was a nice by-product, but rather, to share a moment in time to speak with one another, face to face, in a comfortable setting, with good music and love in the room.  That was all James really ever wanted to do--assist in the creation of meaning in other's lives and form a community based on true friendship.

Lisa handed me a bag tonight with cards signed by the teachers and staff of PS34--notes written to our family and a box of homemade biscotti, still warm! There was also a generous contribution for James's recovery.  I am once again filled with gratitude for those that have given us so much already! Thank you with all my heart.

It is rather ironic timing because today, James asked me if anyone at PS34 knew he was sick.  I told him about the Disney stage set production and that Lise Brown and Andrea Kubis were taking care of it.  He asked me with big eyes, "Do they know I am sick?"  I thought that was a humorous understatement. I reminded him that he has been ill for quite sometime and that I have been writing an update of his condition on a daily basis.  James knows this--I have shown him the blog--but for some reason, it does not really sink in. I watched his face as he contemplated the notion of people knowing about his illness and I noticed that his brow was slightly furrowed. It disturbs him on some level. I wanted to confirm that he felt comfortable about the blog and although his brow did not smooth out, he did give the thumbs up.

I will bring the cards tomorrow for him to see--to hold in his hands--I think it will make his illness a little more tangible for him, which is scary, but at the same time, remind him that he is part of the larger world outside hospital time and that people care for him.

James is apprehensive of the knowledge and memory that is slightly beyond his range of cognition. He is very aware that it is there but it is intimidating, like a wave that is growing in strength and height.  He's deciding whether to dive under it or ride it out to shore but in the meantime, he is treading water--floating beside this enormous energy.  I would be frightened too.  Having the community there for him may be another indication of the enormity of what he is standing outside of at the moment, but I think it is important to bring him back into the circle, little by little.