Saturday, January 17, 2009

Heart in Pilgrimage

As we settle from this cloud of activity and disruption, mostly I'm trying to come to terms not with diagnosis, but with the idea of diagnosis.  For over ten years we've been in a searchers mentality: everything had been about the next step, another possibility.  I have a pile close to two inches thick of only the most pertinent of Robert's medical records.  His chart at Georgetown Pediatrics is in its third volume now, and that's only his general peds care and earlier testing and hospitalizations.  

Like the last shot of the Ford film, "The Searchers," we find our child again, grown and changed beyond what we remember, and we retreat into our house, close the door and black out whatever is outside.

I have a whim to go through Robert's xeroxed medical records and start pulling out phrases and write some kind of prose poem.  Something that would reconstruct him out of the deconstructed mess that he became at one point.

At this level of diagnosis, your child is a potential journal article for every neurologist by whom he is seen.  Scary, but comforting.  At least someone cares.  As a former and recovering academic, I can understand the draw toward the fascinating subject.  Sometimes I even see Robert that way myself: much of the last decade of my life has been spent trying to objectively observe him.  How were his movements qualitatively different today from last week?  Is he better on three doses or two, and of which of the five medications?  It's kind of like spending a decade at the eye doctor's, locked in a little dark room, staring at a lit chart with the spectacles machine pulled up to your eyes, while the lenses flip, first in one eye and then the other, and the doctor says in a soothing, rhythmic voice, "which is better now?  One?  or Two?  One?  Two?"  But you never get to the point where you can see clearly.

Basal ganglia disease.  No, biotin-responsive basal ganglia disease.  Biotin is the first thing he's been on, ever, where the difference between on and off, one and two, was so stark and so clear.  And he's growing--gained 7 pounds in the last 3.5 months.  Maybe his brain is growing, too.  Maybe he's making new cells.  Maybe those cells are not compromised.

I went to a cocktail party for a school fundraiser the other night and spoke to a woman involved who is also an occupational therapist and knows our neurologist.  While I make a good show of understanding neurology and so on, I couldn't repeat all that she said without making grievous errors.  But I was heartened to know that new research into the basal ganglia shows that, in certain regions of the ganglia (which is composed of four or so parts), cells do not appear to die.  They just shut themselves off.  And if we can figure out what the neurochemical key to to turning them on again, well, that would be something now, wouldn't it?  

I mean, isn't that amazing?  It makes me feel as though I am not crazy.  Throughout this whole thing, this whole long soap opera of medicine, I have argued and believed that Robert's brain problems come and go, wax and wane.  That the problems are severe and for a while there was a long, gradual downhill roll, that I would not argue.  But I've seen flickers of change, unexpected shifts, been frustrated by Thing I Saw, But F*ck It, Now You Can't again and again.  I have been to appointments where medical professionals looked at me sympathetically or with a clearly skeptical demeanor.  

The brain in hibernation.  Or, to quote Herbert, the heart in pilgrimage.  He has flickers of finger movement now.  Pulls his back up and sits away from the Tumbleforms chair.  Grabs things.  Responds to questions with a new clarity.  We'll see.  

1 comment:

Elizabeth said...

What a wonderful post -- and not just the possibility. It's the evocation, the articulation of hope and coping and stubborn belief.