plateau

James was walking around the hospital and gym today without a walker and unassisted. The physical therapist was walking beside him but he was on his own.  His gait and the wild hair on the back of his head reminded me of the scarecrow from the Wizard of Oz.  I loved the scarecrow best and would always cry as a child watching the film--during the holiday broadcast on television--at the ending moment in which Judy Garland would whisper to him, "I think I will miss you most of all."

I stayed up past one a.m. last night as Imogen slept reading about rehabilitation for traumatic brain injury. I confess that I have not really read much on the topic.  I thought it would not bring me deeper insight to read about what I was witnessing during his sessions. Well, I was wrong about that--it was very reassuring to read descriptions of the various stages of recovery and what to anticipate regarding the patient's cognitive capabilities. I had read about the possible negative outcomes for right temporal lobe brain injuries but I did not delve into the recovery aspects of James's condition.

It was similar to reading What to Expect When You're Expecting.  I read through that book sort of snorting over all the ridiculous details of being pregnant--the swollen ankles, the legs cramping at night--but it ended up being such an exact prognosticator of my later experiences that it became a sort of a guidebook to my physiological future.

It was a relief, in a sense, to know that everything I have been noticing about James's behavior is textbook traumatic brain injury--from the first moments after his second surgery to his current lack of short term memory.  Instead of giving birth to a baby, we have delivered an injured brain into the world.

James's occupational therapist showed me some arm stretches I should facilitate for James when he and I are hanging out in his room together. I have dubbed them, "The Chris stretches."  James's brother Chris has a comfort position of kicking back in the chair he is sitting in (his mother used to scold him as a teenager when he would lean back on two legs of the kitchen table chairs in his biking gear with cleats still on after a ride) and placing his hands behind his head with his elbows out.

To do this stretch is very painful for James right now because his shoulders are tight.  Jack said that when James makes that wincing face--that's when you know you've done a proper stretch.  We need to widen James's range of motion and by noting that the stretches reminded me of Chris--I have found a simple way to recall exactly how to do them. It also makes James like doing them because he is able to see Chris in his mind's eye at that same kitchen table.  We love Chris and his wife Karen, who is now also experiencing what to expect when you're expecting--their actual baby, as opposed to a metaphorical brain baby, is due in July.

James and I attended a lecture given today by Eliette Markhbein, a traumatic brain injury survivor. Eliette was a journalist before she was hit by a car while riding her bike and severely injured her spine and brain.  During her rehabilitation, she discovered painting and became an artist.  The room was filled with patients nodding in recognition to Eliette's presentation of her paintings which she made over the course of her rehabilitation.  The images were mostly abstract but represented the experiences Eliette had overcoming the confusion, suffering, and loneliness of the recovery process.  She described various aspects of her recovery, including the strain on her relationship with her husband and acknowledging the loss of her past self--she was so vital, it was difficult to believe she was ever disabled.

After the presentation, she introduced herself to me and James.  The man sitting next to me, a stroke survivor joined us. The stroke man mentioned that he completely identified with her description of reaching various plateaus in recovery--thinking that one cannot move forward and that a kind of surrendering rest is the only recompense.  He explained that he often felt like giving up and decided to be satisfied with whatever plateau he happened to be on and then, to his amazement, he would begin to progress forward again and he realized, he was on to the next plateau.

This was incredibly helpful for me to hear.  Seeing how vulnerable James was today, walking with his stuffing showing, so to speak, made me nervous about the timing of his recovery and if he will experience slippage.  Having the concept of a plateau, a place of rest to look out on the ocean before getting up and moving on--it was such a relief to me.  We truly can take our time through this process.

James is so mobile, he put himself into bed today instead of sitting in his chair. His nurse found him in bed and exclaimed, "How did you get into bed?" I can just imagine the grin on James's face.  It is a serious risk he undertook because he often becomes dizzy when changing positions and one miscalculation could result in a fall which would undo all the work he has accomplished. It's frightening. As a result, the camera eye was placed back in his room. James cannot be trusted.

James's doctor stopped by to explain this to him.  He was wearing a tie made up of day of the dead skulls.  I said, "Nice tie" and he sort of covered it up with his doctor coat, seemingly embarrassed by the ironic humor of it.

James was not purposely being mischievous though--it was not an act of macho bravado.  James has no short term memory.  So, even though his occupational therapist seriously warned him the other day about moving about on his own and I have continued to remind him and even pointed at the yellow wrist band he wears that reads FALL RISK, James still forgets to be careful in that very moment he has the idea, "I want to get into bed." Only the very present is present in his mind. The doctor even mentioned the unknown, unknown!  James does not know that he has no short term memory because he's already forgotten the discussion about his lack of short term memory. It would be funny if it wasn't so dangerous.  As my friend Jeffrey likes to say, it's all fun and games until someone pokes out an eye, then, it's just fun.

I will end with a quote from W.G. Sebald from a book review of Robert Walser's short stories. James and I really love Walser--James even had the privilege of working on a show of his microscripts at the Drawing Center.  I am slowing starting to read on the subway again, beginning with a few articles here and there.  Sebald was wondering about the pattern and significance of coincidence.  In a coincidence of my own, the image I posted yesterday ended up being a drawing owned by a gallery owner that James occasionally works with to install art.  It appears that James may have hung that very drawing!  Sebald writes, "Are they rebuses of memory, delusions of the self and of the senses, or rather the schemes and symptoms of an order underlying the chaos of human relationships, and applying equally to the living and the dead, which lies beyond our comprehension?"