Have you seen the movie “Oscar and Lucinda”?  It is based on a book by Peter Carey, starring Cate Blanchett and Ralph Fiennes. The book was released in 1988, the movie in 1997 with the story set in the 1880s.

There is a  scene in the film in which a glass church is being floated down an outback Australian river.  The church is so ethereal, so fragile, so beautiful, so ephemeral, so precarious as to take your breath away.

So how has this floating glass church wended its way into these illness narratives posts?

In earlier posts I mentioned how a full blown ‘flare-up’ has been pushing my life around this week. The drug intervention used to manage this event is quick, powerful, and brings almost immediate relief from the savage pain of the flare up. Then four days down the track this drug starts to have an added effect. It gives a voice to anxiety which then starts screaming in my ear, in my head, next my body shakes and shakes, my hands can’t hold things reliably and the ideas anxiety generates are woe-filled.

So I think I need to add the notion of slivers to that of shards and fragments. When one of my daughters was about 11 she ran through/into a full length glass door which broke apart and fell to the floor in glinting, razor-edged  slivers of glass. Fortunately she was bounced back from the door on impact and the glass slivers hit the floor and tore holes in the tiles and timber while her body was out of their range. Today  a much cared for and valued gift  fell through my confused hands and smashed. More shards and slivers. Connections represented by this precious gift now feel under threat of fragmentation.

This shivery, shaky, highly anxious state has me thinking of the glass church. Though not imagining myself as ethereal (if only), the sense of impending peril is very present. The notion of being in danger of speedy disappearance is chittering-chattering away in my head. Problems take on the proportions of Godzilla. Trying to stand in a relationship of curiosity to this phase of the drug’s impact is beyond me. So what to do? What to do? This is a chemically induced anxiety and  not available to rational thought.

A friend of mine said that when she was nursing, she noted that lots of anxieties settle a bit when the body has food. So I eat some food.  A warm, slow shower helps a little, chamomile tea helps, watching something easy on TV helps a little, ironing helps a lot, walking slowly with the dog helps, reading particular books helps,  but the night waits and as Nabakov said “night is always a giant, but this one [is]… especially terrible”.

This has me thinking about the changing relationship I have had to negotiate with my body over the last 5 years of this illness.  A very loyal body I would once have claimed, one I dragged kicking and screaming behind me as I romped off on all sorts of adventures. But as I find myself watching with a sort of detachment the crazy things my body is  currently going through I can see that the contradictions involved in my treatment can be madness-making. Trying to negotiate the contradictions of wanting my body to be safe and free from pain while agreeing to interventions that are often painful, anxiety producing and a form of insult are not navigable. I think of Johnella Bird’s work that invites me to find a metaphor that has more agency, possibility and future than going down the madness path.

I come up with the notion of taking  small steps, small courageous steps. I start to wonder what knowledges I hold about courageous steps, what are the practices that might encourage the taking of such steps, what effects these steps will have on the effects of madness, what rememberings and knowledges do friends and family have of my taking courageous steps at other times? The world starts to feel more stable.

The discourses of contradictions would invite us to think about ourselves as liars, confused, irrational. Demand that we ‘make up our mind’ about where we stand and what we want. This relational work of Johnella Bird offers me the chance to find a bridging metaphor to start working with, one that can find a harmony between seeming  competing contradictions, one that has a fit for the life I would prefer to be living, one that brings forward a sense of personal agency and helps construct and thicken up identity conclusions that reconnect me with the valued notions of compassion and kindness. I feel the stirrings of curiosity about what these small steps might look like, where they might take me, who might accompany me, and the day stabilises a little more.

Mayhap approaching night need not loom so large now.

A soft day, thank God,

A wind from the south

With a honeyed mouth;

A scent of drenching leaves,

Briar and beech and lime,

White elder-flower and thyme

And soaking grass smells sweet,

Crushed by my two bare feet, While the rain drips,

Drips, drips, drips from the leaves

W.M.Letts

A soft day, I have a body free from pain, the cockatoos were right, the rains came, and the day is soft, grey, cool and feels like a blessing.

The sort of day that allows for physical ease, enjoyment of reading, drinking Singapore Breakfast Tea, for just being present and sharing small conversations. This is what disease and illness and pain attempts to take me  away from, this hope I hold for lots of ordinary days, a seductive possibility.

This idea of holding hope is also a tricky one for me. There are times when hope is too heavy, too demanding an idea to carry, so it helps if I can have a holiday from staying connected to hope and get someone else to carry it for me for a while. In structural, polemic thinking the idea of taking a break from hope would have us thinking the only option to fill this gap, this newly created space must be hopelessness or despair. Whereas for me having a rest from hope is an act of care and kindness to myself, an intentional act of agency.

There are many expectations of people speaking or writing illness narratives to make evident a strong, unwavering, unchanging relationship with hope. A requirement to take up the burden  to be inspiring, adding to the illness experience the burden of ‘noble suffering’.  The willingness to listen to illness stories that do not conform to these requirements, stories that speak of chaos and rage are difficult to listen to. However if we stay present and can bring forward what is absent but implicit in this rage, what it is giving testament to, the stories hold the possibility of making stronger the storyteller’s connection to a preferred life and identity.

I would sound a word of warning here that while the building and telling of stories seems a personal even private act, there are always cultural, social, political and economic pressures at work on the voice of the storyteller that attempt to mediate what is told. There are discourses acting on and competing for supremacy in this space and these discursive practices will have effects in the storyteller’s life and on what is not spoken/written.

This had me thinking about how most stories including illness narratives, while stitched together from fragments, recollections, shared rememberings, and the incidents of today, have as their focus preferred futures, the life yet to be lived.

However for me today is just fine, tomorrow can wait its turn. The dog pongs because he is wet, I came back dripping and cold from our morning walk, my iPhone camera isn’t working, and internet connection is intermittent at best, but for today it’s all good. A soft day indeed.