death, disability, disappearance

I returned this past weekend to Temendia, to clean out the kitchen cabinets, haul boxfuls of paper, unsalvageable kitchen wares and cardboard (boxes of boxes) to the recycling center, drop off at Goodwill disused clothes for which no one who remains here, in Temendia, has any use. It stimulated useful, if far from original, reflection on impermanence and the pathos of the struggle to hold on to a sense of selfhood. (Whether that sense of selfhood is sensible, or not, is another question.)

All that stuff — nine largely unused boxes of Kleenex, all opened with only a sheet or two snatched out; cabinets crowded with empty jam jars, pickle jars, jars from salad dressing, mason jars; a surprisingly large number of wearable but seldom worn clothes in storage beneath the bed, unworn because forgotten; baskets full of birthday and holiday cards from friends and family members spanning years, many with annotations (‘replied May 9’, ‘send a thank-you note’); odd bits of writing on scraps of paper; folders of newspaper articles and excerpts from books that I had thought might interest her; recipes created for her, long since cooked and eaten but documented for future reference — all that stuff is a far from mute testimony to the tense, anxious, relentless effort to preserve a life, a sense of self, against the relentless erosion of progressing disability. (The life to be preserved: no mere appearance of a life, but the lived experience of a certain way of life. The testimony not mute if you stop to listen and let yourself hear, if you stop to look and let yourself see.)

I miss her terribly — recognizing all the while that “it is Madeline you mourn for.”

The night at the end of the tunnel

WP_20130518_037_snipHere’s the thing: I stumbled into Temendia, by taking one day at a time, always supposing that this was temporary, short-term, just another in a long series of choices and half-choices that could be reversed at any time. Midway, or more, along that path I woke in a tunnel at the end of which was only night, made darker by the bright light of my fantasies. But Temendia only makes the darkness visible — the light at the end of the tunnel, if light there is to be, is only the light I bring.

Things lost on the path

Missing shoeTemendia absorbs me. No there. No here. No then. And, as a result, no real sense of now. I arrive, take care of things as best I can, try to retrieve and sustain for a few moments an echo of the past, and then leave. But I do not leave, for there is no there to leave. Leaving implies the possibility of return, but here is only recurrence without return. I have left the path without wandering from it. I continue on it, but without a destination. I can no longer imagine the course of this journey. Only now do I realize I am missing a shoe.



Losing your head … and trying to keep it

lost_head_snipSpending the past couple of days immersed, once more, in the world of dementia — experiencing it in some ways vicariously but in other ways in the first person. It is inaccurate to think of those suffering from dementia as ‘demented’.  The suffering, even at very advanced stages, is a way of life associated with fragmentation of memory.  Memory allows the past to cohere with the present.  The continuous flow of memory that most of us take for granted enables the imagination which connects our present with our possible futures.  Without memory and imagination, the ongoing flow of experience — life itself — becomes a baffling sequence of events: a perpetual uneasy, half-conscious sense of being interrupted while in the middle of some urgent task … but what, exactly, you cannot say.