A Big Deal

James's psychologist on the team also speaks with me to check-in on my mental health--she is there to support James through recovery but also, his family as well.  I like her.  She has told me, repeatedly though, that this is a BIG DEAL.  I slightly recoil in my mind during the quiet pause she provides for emphasis after saying BIG DEAL to give it time to soak in. I also find it a somewhat comically obtuse word choice.

I am well aware of the size of the deal.  I sat for a month, every day, in the NICU at Bellevue watching James's arms make involuntary muscle movements which the doctors pointed out were a negative neurological sign, known as "presenting" that may indicate brain stem damage or a decline.  I spent hours researching right temporal lobe damage and the statistics for recovery.  All the dry research helped to tap down the emotional volcano brewing inside me because the reality of it was so close--it was my life partner lying a few feet away from me possibly dying in his bed or if he did survive, he may not recover his spirit and mind.

Rehab is definitely the next step in the challenge but there is a size differential to the deal.

I thought it might be prudent, to say once again--that the rehabilitation process is for James's brain--not just his body. It's not as if the brain recovers the same way as say, a broken leg.  It is a mystery, even to the doctors and therapists that have spent their careers working with brain injured patients.  James is exhausted because he uses his brain to sit up, scratch the side of his face, swallow, move his eyes around the room, walk, cough, move his hand to make the "ok" sign because it's too difficult to send the message to his mouth to say yes--you get the idea.  He's experiencing therapy by sitting still and silent in his chair. 

When James does an activity with his occupational therapists such as looking at a photograph and naming every object he sees and recognizes--it is exhausting. He has nothing left over after doing a ten minute exercise such as circling all the small stars on a worksheet covered with stars of different shapes.  I am sharing this with you not as a means of belittling James's efforts or with the suggestion that he will not progress forward and recover.  I am attempting to explain his current state and spirit so that you, his loved ones, will know that he's not going to spend his down time sketching in his room. He's not there yet.  There is no down time.

I also want to mention creative capacity.  His doctors and therapists have really latched on to James's identity as an artist. I think it is a good thing and I have always joked that artists never really have a day off--they are constantly working away in their heads.  James thought of himself as a conceptual artist despite the fact that he is a painter.  He has some serious, bad-ass attitude about his art process.  I have no idea where that portion of his soul is right now.  I like to think it may be hibernating. 

Recovery of one's brain is a process that involves the core of a person's selfhood and identity.  James is not himself in a very profound way right now and yet, he is himself.  That creative person still resides inside his spirit but it's floating, tethered to circuits that are reforming. 

He is full of surprises.  When I arrived today, his room was empty--no bed--his chair was there with a sheet of paper that had the following on it:

J  Joyful, Jubilant, Jolly, Judicious, Just
A Awesome, Amazing, Agreeable, Artistic
M Marvelous, Magical, Masculine, Merry
E Enthusiastic, Entertaining, Energetic, Excellent, Exceptional, Extraordinary
S Sensible, Smart, Silly, Subtle, Special

He was having an X-ray to confirm that his lungs are clear to prepare for a swallow test tomorrow.  James told me that the name list was made in his group session today with other patients. The descriptions of James were provided by the peer group.  James was pretty content while I read him the list of words and asked him about it.

I then asked him, since he was already in bed, if he wanted a foot massage. I put on some Glenn Gould Goldberg Variations and James fell asleep as I worked on him.  I include leg and arm stretches in the routine now and realign his shoulders, neck and head.  I am working a few acupuncture points too--placing a little pressure on them and trying to send my energy through him.  At one point, when I made my way back down to his feet, after applying pressure along his legs, he woke up and smiled at me.  He said, "You still have it."

He's such a charmer.