Though much is taken, much abides

When she was confused and incoherent and aggressive, it was consoling to think that this was not really Elaine. This was a disease having its way with her. She was still there, in there somewhere, but this was not her. This was not real. I still think that was true, and tonic for our distress, but at the same time she demanded and deserved care because she was still herself. Though ravaged and fouled, her personhood was undiminished. 

This is the thinking behind a reconsideration of dementia care in the US, based on the work of British social psychologist Thomas Kitwood, a pioneer of what it seems strange anyone should have had to pioneer: person-centric care. It's a view that critiques our prizing of cognition over other aspects of human being, like sensuality, intimacy, pleasure, which survive the dereliction of the mind. A view that returns us to the mystery of human life, the more mysterious at the moment of its unravelling.

A recent New Yorker piece describes what Kitwood saw as the problem. “In advanced Western societies, where a sense of community is often weak, the evident frailty of people with dementia generates fear; this unease is socially managed by turning the demented into nonpersons, who are warehoused in nursing homes and pathologized with terms like 'resisting care.' The problem, Kitwood concluded, 'is not that of changing people with dementia, or of “managing” their behavior; it is that of moving beyond our own anxieties and defences, so that true meeting can occur, and life-giving relationships can grow.' Only in this way could the personhood of people with dementia be conserved, even as their intellection declined." This is about seeing people for what they keep, not what they lose. Though much is taken, much abides.

None of this does away with the indignities of showering and feeding and changing nappies, but perhaps it transforms them from mechanised processes into acts of grace. Acceptance instead of anxiety. Love instead of fear.

When I put out to sea

This is the last post for a while as we're travelling overseas for the whole of October. Tennyson's “Crossing the Bar” is really more about death than travel, but it's beautiful and I've been wanting to post it for a while.  
Sunset and evening star,
  And one clear call for me!
And may there be no moaning of the bar,
  When I put out to sea,
But such a tide as moving seems asleep,
  Too full for sound and foam,
When that which drew from out the boundless deep
  Turns again home.
Twilight and evening bell,
  And after that the dark!
And may there be no sadness of farewell,
  When I embark;
For tho' from out our bourne of Time and Place   
  The flood may bear me far,
I hope to see my Pilot face to face
  When I have crost the bar.

 

The breath of the author

I liked this article in the New Yorker, but in my experience, hearing writers read their own work is rarely as good as you hope it will be. You expect to hear something rare and golden, sacred even, in a writer breathing life into his own text, giving it the inflections and dynamics it was meant to have, dwelling, crooning, over cherished phrases. But more often than not (living) writers brush quickly, diffidently, across the surface of their creations, careless of the meter and the rhythm you thought were there. The words lose much of the resonance they had in your head.

With writers from the past it's often worse. One of the most simultaneously thrilling and disappointing experiences of my literary career was hearing a recording of Tennyson reading “The Charge of the Light Brigade.” It was extraordinary to hear the voice of a great poet more than a hundred years dead. But his manner of rendering the poem was so removed from our sensibilities it might as well have been another language.

Perhaps this is because as readers our imagination, interpretation, sensibility, and endowment of significance are what constitute most of our enjoyment of a text. I don't agree with everything Roland Barthes thought, but I think in “Death of the Author” he was onto something:

“It is language which speaks, not the author; to write is...to reach that point where only language acts...The Author, when believed in, is always conceived of as the past of his own book: book and author stand automatically on a single line divided into a before and an after. The Author is thought to nourish the book, which is to say that he exists before it, thinks, suffers, lives for it, is in the same relation of antecedence to his work as a father to his child. In complete contrast, the modern scriptor is born simultaneously with the text, is in no way equipped with a being preceding or exceeding the writing, is not the subject with the book as predicate; there is no other time than that of the enunciation and every text is eternally written here and now.”