Illness Narratives

First Published  February 25, 2014 by marydenese

I was doing some ironing on Sunday. In part to keep the chittering-chattering noise of anxiety at bay as the emergency meds did their task, and in part to watch the sunlight start to lower through the trees and get that deep gold glow that comes only at the end of a late summer afternoon. The radio was burbling away in the background and I was dreamily off in some other place in time. An interview started and I listened with half a mind as I breathed in the smell of sunshine on the laundry that drifted up as the heat of the iron contacted the cloth. Bliss….. this is a favourite smell of mine. Then the blocks came tumbling down as I realised the interview was about the experience of chronic illness and its effects on a life.

This is a poetic I scratched out as I listened to the interview on Sunday, 5.05pm; ABC Radio National’s “The Body Sphere” with Havi Carel.  Carel, a philosopher, has written a book titled Illness: The Cry of the Flesh.

Fear it, face it, here, read about it in a manual,

This diagnosis changes everything.

The body as object, silent when working well, when strolling in the evening.

The body as lived, in illness, then it is the cry of the flesh.

There is a rift.

Health professionals are after the numbers, interventions, all  focused on disease, they give a hostile witnessing.

For the patient, the tests always a little bit worse, incredible sadness, crying for support.

It isn’t always about time, it’s about how you are present; the need for a practical wisdom.

 

I remember days, weeks, months going by as my experience of this illness asserted itself, and me feeling as if my body had been taken over by an alien. I viewed my body with a sort of horror, a rage about its betraying acts, its ever increasing propensity to developing further complications. This body had become unknowable, unpredictable. I can remember during many of the interventions both chemical and physical, often very pain filled and chaotic in their effects, the temptation to step away from my body during these procedures, a wanting to distance myself. In some ways I could identify this as an act of agency, doing something, anything rather than being a passive recipient with no choice but to acquiesce. However  this mental distancing is risky as it  increased my experience of  body alienation.

I remember thinking at the time that this distancing was like trying to keep at arm’s length a person, someone I didn’t particularly like, who was trying to establish a relationship/friendship with me when I wasn’t interested. That feeling of keeping a measured emotional gap between me and the other person, a wariness, a watchfulness, a need to keep my guard up. I remember one day feeling profoundly sad at this loss of connection to my body, I felt bereft and realised this loss was also contributing to my feelings of fragmentation in this illness.

Illness narratives will often be an attempt to re-connect with the sense of a future now under threat from chronic illness, re-connection to others often at risk as solitude is chosen because  interacting with others as a ‘sick person’ becomes more unacceptable, re-connection to identity claims now under siege and breaking apart, and also a yearning for a reconnection with one’s body. Frank notes that there has long been a dualism in discourses that separates the ‘self’ from the body, and cultural and societal factors can increase this separation. As in Carel’s interview her plea that medical professionals have a care for the rift they foster when they treat only the disease of the biological body and see as irrelevant the patient’s ‘body as lived’  subjective experience.

I remember sitting down one morning, it was winter and the fire was ticking softly, the wind outside was cold, but in the house it was warm and comfortable, and deciding I would take steps to re-establish a relationship with my body, the loss and separation was too sad to bear. I decided I would try and build an alliance with my bodily self rather than continuing in the experience of being held hostage to it or regarding it as a somewhat creepy, unknowable, alien artefact.

I started a diary to record the unknowables, to see if I could find a pattern that would at least give me some way of predicting my physical responses and symptoms, some small sense of knowing and sites for re-connection. I did this carefully over many weeks and what started to become visible was the many ways my body was continuing to behave in ways that I had long known and trusted. I was delighted to find that while many things had changed there was much that was familiar and could still be relied upon. This felt very liberating and a massive weight slid from my shoulders.

I remember making a commitment to tread softly with my bodily self, appreciating that the loyalty I had experienced from it previously was still present, in fact even more so given the unrelenting illness effects, and rather than trying to gain some mastery over the illness and my body, which made each day exhausting, my bodily self and I would go as easily as possible over the coming hurdles.

Like any relationship it has it good and bad days, however the ideas connected to my body have moved from rage, betrayal, alien and oppressor to ideas of care, respect, compassion and ally.

This also has me wanting to address the notion of bearing witness to illness and pain, ways other than being hostile or ‘removed’. I recently read some work of Rita Charon, a medical doctor,  in which  she suggested the practice of witnessing illness narratives from a position of ‘narrative humility’. A willingness on the part of  health care professional and carers to listen to the stories offered, knowing they are not the authors or experts of the narrative, and making themselves available to be changed by what they hear. Quite a challenge with lots of risks and nuances to be managed, and emotional work of great complexity. Michael White, building on the work of an anthropologist Barbara Myerhoff, developed  a narratively informed therapeutic practice called  “Definitional Ceremonies” to support counsellors to be available to ‘being changed by what they hear’, while positioning themselves in a way that keeps the storyteller centred and the expert in her/his own life. Food for future thought mayhap?

I am a tad bemused at this post, it seems a lot of words to come forth from listening to a half an hour radio interview. Even ironing has its risks.