Tuesday, February 05, 2008

Wandering in the wilderness

Robert continues to improve, and we've gotten word from the doctors at Kennedy Krieger that all tests except the research lab test for biotin-responsive basal ganglia disease have come back negative or normal.  We have a long relationship with testing that comes back negative or normal.  A romance, in fact, in which we both love and hate the relationship.  On the one hand, it means that yet more terrifying things have been avoided or averted or turned away.  Those things cannot touch us or him.  

Yet, on the other hand, there is a child in trouble for whom some sort of treatment or knowledge might yield improvements.  But why hope for a diagnosis that might scare the hell out of us?  A diagnosis that would put the lid on a person, a child, an agent of potential?  Diagnosis: lid or destination.  I once wrote: "diagnosis is not a destination" in a poem.  I mean, you only want diagnosis to be a destination if it's what you'd like to sail toward.  Otherwise, you are furiously paddling against it.  

One of the things I hate about the idea of diagnosis is the sense of finality that it expresses.  Diagnosis now has connotations of finality, of endings, of dead ends, of nowhere to go.  Diagnosis a brick wall that I would rather not have us slam against.

Part of me thinks that Dr. Gusella's lab will find nothing and yet the biotin seems to be doing something.  So that would be weirdly positive and happy: no finality, no endings, but a dietary supplement that seems to be inverting circumstances.  Why should things change now?  Things have always been undefined, uncertain, unreal.  I'm used to it now--to wandering in the wilderness.  I simply can't believe that Dr. Gusella will serve us up a diagnosis.  

1 comment:

nikki said...

I read you blog with concern. Jeneva, I have always thought the a diagnosis would be a beginning, a place that one could start with a treatment and if that treatment didn't work, one could try another until all treatment is exausted, I think one must have a diagnosnis if improvement or cure of situation can occur. With that said, you have bravely sought out everything you could to help Robert in every way. I may not have told you or told you enough times how much I admire your tenasity, your braveness and above all your selflessness you display in coping with Robert. Remember, part of you "village" is hte Stone households and we love you and of course Robert very much. Nikki