Fist Published Posted on February 19, 2014
Again an overcast morning and the promise of some significant falls of rain, eagerly looked for after weeks and weeks of heat, drying winds, dying grasses and plants and rapidly shrinking dams. I was, yet again, out walking the dog (or was the dog walking me?) in the cooler, overcast morning and this hope for rain had me maintaing a vigilant stance in relation to the smell of the wind, searching, searching for a hint of moisture, watching the movement of the clouds to see if downpours were imminent, noting the flocks of black cockatoos in the conifers and recalling local anecdotes that if black cockatoos arrive then rain won’t be far behind.
This state of hyper awareness in relation to the hoped for rain had me thinking about the sort of vigilance that I now find myself holding in relation to this illness. A sense of being aware of small changes, trying to anticipate if this is the beginning of some new problem, wanting to pre-empt it if possible, monitoring, monitoring, endlessly asking ‘is it time now to be alarmed?’ This hyper-vigilance is also a hallmark of trauma, but we will explore trauma, illness and illness narratives a little way down the track, yet another dot to join. Dots everywhere, the floor is strewn with them, such a wealth.
What caught me by surprise is how, when my attention is taken up with this need for alertness to small danger signs, it is distracted from other useful knowings (those absent but implicit resources) that I can call on in times of trouble. I am currently experiencing what is known in this illness as a ‘flare up’. Flare ups are signalled by extreme pain as previous well-controlled sites of disease go off their chops and start shrieking for attention. Douglas Kahn wrote about the changes in his life when he was involved in a bicycle accident (The Guardian. 23/01.2014). He writes of his walking progress after the accident “without my normal strength or reflexes, and with pains laminating each step, the path became fraught with loose rocks ….”.
The notion of ‘pains laminating each step’ so captured for me the experience of each movement when a flare-up is in control. The tricky part of this experience is it throws me back to the unrelenting pain of the four years before this disease was under any sort of control. The suffocation and exhaustion caused by the pain returns me very quickly to that previous time where pain is a sort of familiar, weird ‘normal’. Again some strong links to trauma here for future conversations.
“So what” you ask, where is today’s illness narrative leading this time?
Another friend of mine mentioned in one of our conversations that illness often works hard to keep the ill person to itself, it thrives on keeping you isolated, it gets to establish itself as the expert on your experience and your own knowledge, skill, resources, understandings and supports start to disappear from the dialogue.
My first-born son, who currently works in Africa rang yesterday to have a chat. He usually rings as he walks to work in the early morning, and I am here in what is my afternoon, he has his phone on face time and has the camera facing the direction he is walking. So we get to chat and I get to wander along the streets of Addis Ababa with him, soaking in the sounds and sights which delights me enormously. He said he thought I sounded a little weary and I mentioned my body wasn’t doing too well. After a brief conversation in which his voice challenged the dominance of that day’s isolation he suggested I immediately ring the medicos, have a conversation and get some help.
24 hours later this seems such a simple and obvious suggestion to make and not too big a step to initiate. How come I hadn’t done it myself? However when flare-ups have been shrieking for several days, my own knowledges have been silenced by exhaustion and pain, ideas of being stoic have taken hold and a sense of being back in a ‘weird normal’ are shaping my responses, the power of illness to keep me to itself is quite powerful.
This has me wondering what made Aaron available to hearing the weariness in my voice and then following up on this awareness? What made me available to telling him, half a world away, of the un-wellness but had me silenced when asked by other trusted people much closer to home? How had Aaron been present in our conversation that had him subverting the slippery tricks of isolating illness? Surely a rich territory for future conversations.
Illness narratives often have the purpose of reducing a sense of isolation and a plea for someone to witness the acts of agency, based in hope for a future, that would otherwise go unacknowledged and disappear.
Having another person come forward, stand with me in a shared desire for my days to get a lot better, make a simple suggestion that is not too big a step to make happen, suddenly the hold of illness loses its grip, interventions happen and the world opens up again. This reminds me to act and ask for help before illness has me silenced and convinced of its crushing inevitability in which I have no agency for change.
Still no rain, what were the black cockatoos signalling?
Illness Narratives 