Posted on March 1, 2014
It is Saturday afternoon, a mild day, a greyish light, some bird song, mild temperatures, mild breeze, the last of the summer flowers putting on a bit of a show, dog snoring softly on his bean bag and me deciding in a lazy way what I need to get done for the day.
My friend Helen, in commenting on an earlier post, had wondered if there were ways of engaging with the ideas and language of chaos that might help move it from notions of despair and fragmentation to the possibilities of it as a creative space. Part of this reclaiming was to attend to the acts of agency a person might engage in when refusing notions of compliance and where the acts of resistance could be seen as a creative search for more acknowledging medical practices. The making visible for remark that even in chaos people refuse passivity and will act to shape the outcomes of their lives and their preferred identity .
I had been mulling over this idea for a day or so and had looked at a fragment of W. H. Auden’s poetry quoted in an article (also flagged by Helen) by Richard Flanagan. This quote from the article had me thinking about the power of language in constructing people’s experiences of life.
http://www.theguardian.com/world/2014/feb/27/on-love-stories-and-reza-barati?CMP=ema_632
Time that is intolerant,
Of the brave and innocent
And is indifferent in a week
To a beautiful physique,
Worships language and forgives
All those by whom it lives;
Pardons cowardice, conceit,
Lays its honours at their feet.
There is a body of thought in small, seditious corners of the International Development field that call for the deconstruction of “good” words. A requirement to examine the politics, power and silencing of such unassailable words and this had put me in mind of the subversive possibilities of deconstructing ideas held in “bad or worrying” words. Helen’s invitation to see what possibilities words held also suggested a looking beyond Western language contexts to see what else might be available for rich thought in other traditions.
A telephone call just came through with the shocking and heart breaking news that someone in our extended family has been diagnosed with Motor Neurone Disease. The prognosis is very poor and the knowings that sit with the diagnosis has members of the immediate and wider family experiencing shock and terror for their Mum. A sense of horror has descended. The availability of our mothers to our lives rears its head, as a mother my availability to my children’s lives clamours for attention, another dot to be joined at a later time, some dots must wait.
This sad and pain filled news has me thinking about the need to pay attention not only to the “how” and “what” of words constructing lives and experience, but to the timing of how words are used and subverted. The “when” of inviting conversations that explore the wealth of what is absent but implicit in ‘worrying words’. I recalled times when I have told a listener of some of my despair when mayhem has resulted from the unpredictable effects of this illness, of a longed for trip suddenly hijacked by a flare up , my rage at not being able to participate in planned events, my dismay when simple tasks like carrying out and hanging up the washing have become impossible, my grief that pain has made me unavailable to hoped for connections, my need at that time for someone to listen to that unhappy, uncomfortable, havoc driven experience.
Most people telling their illness narratives, including myself, are vigilant for all sorts of cues when telling tales of woe. If I feel hurried past the particular, the often chaotic experience, if I am invited too quickly to look at other possibilities contained in the experience and language I am using, then I read into the hurrying that the listener has been made uncomfortable, is uneasy with my sadness and anger, that I need to modify my revealing, I need to protect and not alienate them.
When chaos is rampant in my illness experiences, either because it defies control, planning or predictability, or because it carries in its wake a knowledge that the outcome is irrevocably predictable, then what I feel at this time is despair and exhaustion. Having trusted others willing to bear witness to this exhaustion, involve themselves in this difficult task is a generous act of compassion. When I am heard in this way I start to find a space in myself that is available to conversations of what else is possible. Because even as I tell these tales of woe there is a yearning in me for other possible stories, ones in which a better future is possible, where other understandings and meanings may yet come forward.
But first I need my listener to be present in non-hurrying ways to this tale of distress, then often, a little further down the track, between us we can enquire about the skills for living, endurance and resilience that were also told in the shadow spaces. We can both shape and tease out understandings that sit with those acts of endurance, the knowledge and skills of life that have made enduring possible and gain an appreciation of why someone would bother to keep on ‘keeping on’.
A little further down the track.
Attending to the distress and pain of those trying to find a place to stand in the chaos and disarray of today’s new and unexpected disease prognosis, reminds me to bear witness and be willing to be changed by people’s sadness. To be quiet. To try and hear what is absent but implicit in their grief. To do by not doing.
Time may create a space where the void that has opened up in these lives can hold new possibilities, but not yet. I am thinking that taking care with timing could be considered an act of grace.
Illness Narratives 