However, my choices are, abandon hope all ye who enter here, or, seeing what I see, which is not quite that bad, and being realistic about the clear negatives and positives. It still puzzles me that people expect me to come to some kind of final conclusion or belief about my child. Do parents of typically developing children reach finalities of expectations? I think not. So why do I often get the sneaking suspicion that, just because my child is disabled, I should not have 'expectations,' even though those expectations might be measured and reasonable? This is all part of my theory that people who are outside the direct caretaking circle of children with disabilities have a psychological need to reduce a child to an absolute diagnosis and prognosis, even if its implications and actualities are simply theoretical, even baseless--it makes their lives more comfortable and their social interaction with your family clearer, less problematic, and, perhaps, reassuringly peripheral.
That said, there are days I am quite tired of wandering in the wilderness without answers. And, hell, even if I turned to the various theoretical implications, those are hardly hard and fast answers.
The same is true about Robert's gastroenterological care. But this is the stuff of my nightmares. It seems clearer now that his unexplained periods of feeding intolerance, boiling gastritis, and vomiting have some link to the slow progression of his brain disease. But living through each of these periods, hoping for its end, while being able only to comfort your horribly ill, distraught, and frightened child, while trying to put on your best "parent" face and say, over and over again, though you may say it only to try to sandbag the rising terror of your own doubts, that everything will be OK, you'll be OK, mommy can fix this--this is the worst hell I can image. Forget each of the awful punishments of Dante's Inferno, putting on a brave face for your child in the face of utter terror and the unknown is the lowest circle of Hell.
Each time we make changes to Robert's g/i care, we seem to enter unknown territory, and each bump in the road ignites the old terrors and the old days of being without a road map, doing guesswork, and treating your child like a science experiment.
So this has been the spirit of the last few days.
During the midst of this, I developed an intense frustration with poetry. Well, with certain types of poetry. There are poets who use disjunction and unconventional syntax to up-end conventional thinking, to allow the mind to make new, neo-metaphysical connections. This stuff I like. Then there are others who are sort of past strict Language poetry, but who are still enamored of setting up signifier after signifier stripped of its connection to the signified. All of these signifiers are nice and concrete and 'imaginable' and are held together by rhetorically complete phrases with appropriate grammatical and syntactical connections--but what is signified is insistently, mysteriously not even veiled, but reduced to empty gestures in order to represent, I guess, the futility of emotional content or meaning. Like a suit flapping on the clothesline puffed up with air. I don't know if this makes sense--because I see the first group with intentional leaps and disjunctures as inviting me into the space, inviting me to connect, allowing me to construct an emotional trail. But the second group often wants to use the intentionally snipped relationship between signifier and signified to distance emotion (as though it were beneath us) and insist upon unreadability.
I would give examples, but don't want to risk pettiness. Those poets whom I know who read this blog, don't worry, I'm not talking about you as the negative examples. But I think that even Lyn Hejinian's My Life falls into the second category. While she's trying to frustrate the development of absolute meaning, the repetitions and the elegance of the language of the sentences, their signals of emotional content, all allow the reader space to create meanings and emotional vibrations, even if those are highly individualized. That's my take on her at any rate. Some of this other stuff seems done in order to preclude that. Am I being fair? Probably not.
But it occurred to me, I who am relatively catholic in my appreciation for a wide range of aesthetics, and patient and appreciative of difficulty, am losing patience with the second group in part because I live in this world at the level of the real and quotidian in which I am constantly dealing with signifiers (symptoms, observations) for which causality is tricky and for which signifieds (biochemical certainty, exact understanding of brain structures) are often unknowable--and this is not an intellectual game. This is life with dramatic consequences. With real things at stake. With material things at stake. And I have lost all patience for poems that enjoy frustrating meaning and connection purposefully--and let me reiterate that I still have affection for those poems that use disjuncture and syntactical maneuvers to help the reader see differently, to jog the brain from its habits of thought. Seeing the world differently is about all I can do in my situation, and prevailing upon others to do so as well. So, shift my consciousness and frame for the world and I love you for it, but don't talk down to me by pooh-poohing my desire for connection of some sort as though desiring that were evidence of my ignorance and naiveté.
I heard Matthew Zapruder discuss last night at a reading, what he saw as the prevailing winds of Language poetry and its corollaries losing their momentum because they've made the point that language is a faulty series of signs clear to all (and, sure, it's a reasonable point). He noted that the tide is turning against this aesthetic because what is pressing down on all of us now in this increasingly political world in which material things are at all stake for all, what is pressing down on us now is the encroachment of the real, the actual. The implication is that words do have affects and effects, do have something at stake, do have relationships to expression. It seemed right. It seemed wise. It made me feel hopeful.