Wednesday, April 08, 2009


When I can pull the rotation of my thoughts out of the orbit of daily life and its round of disability and care tasks, grocery lists, medical supply and prescription ordering, school form completion (so many dead trees!), laundry folding, and so on--when I can jar my internal universe out of its typical orbit, I find my thoughts orbiting lately around old images, old passages from literature, old scenes from films.  And then, of course, I end up exploring those points of literary contact for points of reference to my current life.  Is this productive?  Don't know and don't care, but it's an intriguing parlor game.

The focus of literary meditation for the last few days has been a passage from Conrad's Heart of Darkness, which I managed to teach to tenth graders a while ago, much to their initial consternation and eventual fascination.  Heart of Darkness is a tale within a tale.  Marlow is the secondary narrator.  He is said to have (with some dread on the part of the primary narrator) "inconclusive experiences."  Let me here raise my hand.

The primary narrator tells us readers:

The yarns of seamen have a direct simplicity, the whole meaning of which lies within the shell of a cracked nut.  But Marlow was not typical . . . and to him the meaning of an episode was not inside like a kernel but outside, enveloping the tale which brought it out only as a glow brings out a haze, in the likeness of one of these misty halos that sometimes are made visible by the spectral illumination of moonshine.

This passage makes me think of our whole long quest for diagnosis with Robert's illness.  The big, broad river of symptoms like the Congo, which leads into the interior of his brain with its chaos, the enslavement of its thoughts.  And the fact that the river leads somewhere, but somewhere most of the researchers and doctors we've sought counsel from have never been.  And along the way there is often bad advice or odd diagnoses (like the medical student who, needing a reason to release us from the hospital after a trip to the ER for something that always seemed to cause the medical students and residents a great deal of excitement as this case presented 'opportunities'--the medical student who assured us that while this was not a typical presentation of botulism, it surely was botulism and would probably resolve at some point--this a couple of years after debilitating onset of symptoms--we said, 'thanks' and were grateful to go home).  And this is like Conrad describing the man of war firing into the bush: 'there she was, incomprehensible, firing into a continent.'

But the tale.  Diagnosis is like being able to crack open that nut and retrieve that kernel, because, surely, it is there!  But Robert is like this unknown, inconclusive interior glow with the meaning, or diagnosis, hazy around the outside.  The tale is perhaps, the outside, the dim recollections of symptoms and what we were doing at the time, what can be remembered, what can be retrieved and ordered from the randomness of it all.

All of my thoughts on this, all of my memories simply return to the day, the single day, it was apparent that something was dramatically, instantaneously wrong.  No real warnings, unless we can go back and randomly guess, hey, was that odd little thing a warning or a figment of our imagination?

And I was the only witness.  And I can never, ever get over the magnitude of that: being the sole witness to the bizarre, freakishly sudden breakdown of a brain and a body over the course of a few short hours.  

The day before he'd been fussy, had fallen over strangely and not gotten up.  The babysitter had been worried he'd seemed 'out of it' periodically.  Sleepy.  Ptosis is the word we later learned.  I'd put him to bed early and thought I'd phone the doctor in the morning.

The next morning, my husband left for work.  Robert woke up.  Was like himself.  Thought I'd shower, get ready because I had that feeling they'd say bring him right in, which meant a drive from Bethesda to Georgetown.  I showered.  He played in the bathroom with toys.  And then he simply turned inside out.  His gaze went to his interior.  He didn't notice what was around him, recognize his name when I called.  He was perfectly still, slumped into himself, still sitting but as though he were without the benefit of bones.  It was not a seizure; it was something else that I have never been able to define--it was a self presenting as absence, but with the traces of the self still drawn on the exterior.

And then, suddenly, he snapped out of it.  As if it had been a dream or an apparition.  He knew me again, he crawled after me into the bedroom where I was somewhat frantically trying to pull myself together.  He pulled himself onto the edge of the bed to stand.  He was himself, the child I knew--happy, lively, smiling, connected.  

Why I stood there then, I don't know.  But I called for him to come after me, to go back to the living room and the phone.  And I stood there and I watched him.  Because I thought maybe I should understand this, maybe I could understand this.  If I watched.  If I observed.  Because that is what I had been trained to do: read or watch, observe, analyze.  

And he looked at me, puzzled.  And he spent perhaps five minutes picking his way down hand and finger by hand and finger from the edge of the bed to the floor.  Uncertainly.  Pausing.  Stopping.  Looking.  Trying to think about movement and what it was.  Each placement of the physical body uncertain.  And he finally was as, good boy, he should be: on hands and knees, ready to crawl.  And he looked at me as though he had no sense for what that might be--to crawl.  And he put his forehead down on his hands and he cried, not from helplessness or fear, but from confusion.  

And I picked him up and comforted him.  And we left for the hospital.  And I left the child I thought I knew in that house, in our bedroom, like a ghost.  And for years, I couldn't think of leaving that house, selling it, remodeling it.  Because he might come back.  The house has since been torn down.


Elizabeth said...

Oh, my. This post has left me stunned and stricken, really. Your description is just astounding -- I don't think I could use enough superlatives to describe how much it evokes, provokes, defines. I appreciate the words on so many levels -- on the pure sense of them being words, beautifully wrought ones that are so perfectly placed and thought, an expression of thought so beautiful and perfect -- on the level of knowing -- knowing exactly what you're describing, especially what is going on, what went on in your head in that moment. It's as if you've frozen time and then extended it. But now I'm making no sense and I want to just think abou this. And my heart feels your break, is broken, too, for you.

datbot said...

Jeneva - Oh. Oh, oh, oh. What a horrible moment. And though I'd like to make some comment/ response about the writing and artistry here, it seems inappropriate. Just thanks for telling this so honestly.

jeneva said...

Thanks. I'm finding the post a little difficult to re-read right now. It seems important, for some reason, to write this all down.