Tuesday, April 21, 2009

Evading closure

Think of the hospital as a sort of theater.  Not the operating theater--the ward theater.  The pediatrics ward was certainly such a place.  The stages are the multiple rooms, some open to public view, some closed, some with "contagious" signs taped upon the door.  Into each of these rooms walk a variety of individuals: the attending physician, the resident, the medical student,the surgeon, the nurse practitioner, the RN, the therapist, the various medical technicians, the parent, the patient, and visitors.  Each time one of these actors enters one of these rooms, he or she has a part to play.  Sometimes there is a script: test results, discharge protocols, for example.  Sometimes it's all improvisation.  

We were the room with the constant improv.  Was Robert better today?  Was he worse?  Some days we knew, some days we didn't know.  Enter stage left an attending with test results that are negative for a condition that seems very much like the diagnostic cues Robert displayed, except for that one bit there.  Time to reassemble the patient presentation.   

In the elevators at Georgetown, there were prominent signs that warned medical personnel to respect patient privacy and refrain from carrying on conversations about patient care.  It was a big stage with many sets and many players.  A very postmodern drama--like Stoppard's Rosencrantz and Guildenstern are Dead.  

At the time, I was caught up in our own drama within our own room.  But now I wonder what it was like to walk into our room, to check your ordinary person bags at the door, set down the joke you just heard, the plans for dinner circulating in your brain, stop thinking about the person you met at the party last weekend, and walk in to something everyone was at great pains to understand.  Do you tip your hat to the uncertainties of the universe, or drive forward on ego alone?

I continue to have great respect for doctors to this day, but the urge or, perhaps the necessity, to diagnose is something I don't quite understand.  Unless I see it all as theater.  Or a sonnet: diagnosis is the closing couplet in an English sonnet--three quatrains of speculation, and a neatly rhymed closing assertion.  The play can't end until someone speaks the closing lines that make sense of it all--an Oscar Wilde play--the social complications solved, the displacement of identities reverted to common order, and all go home satisfied.

Robert continued to evade closure.  And, eventually, each multiple week hospital stay would end with discharge and further instructions.

For the first several weeks and months of this, I was obedient.  I answered questions, I racked my brain, I followed instructions.  I was docile and hopeful and sure someone had an answer.  I mean, there were a lot of people coming in and out.  One of them must have the key.  

We still have a pile of paper four to six inches thick from those first two hospitalizations, almost all of it test results.  Negative.  Normal.  

Naturally, we became cynical.  Myself much more so than my husband.  Or, rather, I fell back on alternate frames of reference.  

When I was a grad student in literature at Columbia, you could not have told me that poststructuralist and postmodern critical theory would be the best preparation possible for coping with doctors, hospitals, therapists, and teachers regarding the health and general welfare of a disabled child who had no diagnosis.

Yet Roland Barthes, Jacques Derrida, Michael Foucault, Terry Eagleton and others were my best line of defense against an increasingly puzzled medical and educational establishment.  Medical treatment and educational practice start with diagnosis, with a sort of definition: these are the parameters of your child.  Here is what he can do, what he cannot, who he will be, who he will never be, what he can learn, what is impossible for him to understand.  It's deductive reasoning.  Or reasoning based on a belief that meaning is absolute, objective, and innate.  The kernel of the nut in an ordinary sailor's tale.

But Marlowe, in Conrad's tale, relays his stories in such a way that the meaning is like a glow or haze around the outside of events.  Robert was all symptoms, all presentation, no diagnosis, no meaning.

Yet people will try to find one, one that fits their purposes.  Whether the purpose be haste, discharge, ego fulfillment, research goals, or the limited resources of a flawed American educational system.  To fit within a society and its structures, identity and its details must be constructed.

Despite the bad reputation postmodern theories have accrued, these theories are useful frames for difficult situations.  To grossly oversimplify: poststructuralist and postmodern literary theories do not insist that meaning does not exist.  On the contrary, they simply dare to question and evaluate the ways in which meaning is constructed.  Whether the constructions are linguistic, syntactical, cultural, or political.  Suggesting, on balance, among them that, perhaps, there is no meaning to extract from literature, but that meaning is a scaffolding constructed around literature.  And that the site of meaning is typically "contested."

I realized, early on, that the analysis of my son's symptoms and physical presentation was a battle for the meaning of my child.  And that I would never let anyone else take away from me or from Robert the meaning of his existence, so help me god.  Unless I were absolutely certain he or she was right and without obvious bias.  Robert had become a "contested site" and, were I clever and strong and resolute enough, I had a role to play in revealing to the players the subtle biases of their thinking.  So I did.  If I didn't agree with the way a conclusion was framed, I reframed it.  And I have postmodern theory to thank for it.  

Stanley Fish writes, "Literature is a kinetic art, but the physical form it assumes prevents us from seeing its essential nature, even though we so experience it."  A growing child is also a kinetic art, as is the flickering of Robert's defective basal ganglia.  And the physical form Robert assumes prevents many, many people from seeing his essential nature.


Leightongirl said...

Another brilliant analysis. I agree that it helps to be trained in literature and semiotics in order to cope with both the search for meaning and diagnosis of our children (doctors, evaluations, tests) as well as the failure of those efforts (shoulders shrugged, gestures of confusion). What else do we have other than, "This is a narrative, for better or worse"? As mothers, we also learn that beyond the mysteries there is, simply, the loyalty, devotion and love we have for our children. Beyond that there really are no words.

Renee said...

Robert is a lucky boy to have a Mom like you.

Hospitals and doctors can be so intrusive on one hand and so kind and helpful on another.

Renee xoxo

Elizabeth said...

jeneva, you are really so amazing -- your thoughts and writings and ability to peer under your "situation" is inspiring. I always leave your posts with so much to think about and think about...