Illness Narratives

First Published  March 6, 2014 by marydenese

In 1973 Brian, myself, along with Aaron, Carla and Pearl as littlies,  were living and working in New Guinea (Steff wasn’t on the planet at this stage).  A friend came round one night with a new LP that he thought we’d really enjoy. The album was David Fanshawe’s African Sanctus. We listened spellbound and then went into celebration mode as we delighted in this mix of Western and African music roughly shaped around the Latin Mass. Ecstasy and bliss, we were transported and wildly enthusiastic about the music which has remained a fave throughout the years.

Fanshawe re-released the album with added music in the late 1990s. I was curious when I first listened to the CD, appreciative of the sharper quality of sound, the polish, the extra musical works, but it left me dissatisfied. After playing through the two versions of the work several times I realised what I missed in the newer, shinier work was the rough edged quality of the original work, the immediacy, the almost palpable sense of excitement that came though. Whenever I play African Sanctus now it is always the earlier version I listen to. I think it fit for us at the time because we were doing interesting work in PNG, our  living conditions were a bit rough and ready, we too thought everything was possible and we were up to our necks in the adventure of it all. The original version of the work, without the later polishing, better recording equipment, and more grown up, professional  finish held a lot of the energy and  brashness often found in “first time” projects, including the one we were involved in at the time.

As time passed I continued to choose work in my professional life that involved start-up projects, projects that the conventional wisdom of the day would suggest had no hope of succeeding, that were difficult and hard to plan for, where problems or solutions were as yet unthought of and the likelihood of misadventure was high. Projects where the task was to put it on the ground and find a way to make it work and to stay available to be delighted by the unexpected, projects where notions of polish and finish were of no relevance.

I can hear a sigh from you the reader, yes, yes, yes, but how does this spiel about African Sanctus, rough-edged creativity and past projects possibly become a dot that might fit into this blog on illness narratives?

Patience grasshopper……..all will be revealed……maybe.

It has to do with my delight in being a part of things that aren’t thought through to the final step, where the unexpected can happen, and the the rough edges illustrate some of the energy of doing the unthinkable. For me the notion of ‘practice makes perfect’ has had little attraction. Ideas related to perfection have rarely energised me.

This week has been a particularly tricky and difficult one health wise. I have been experiencing a seemingly endless ongoing problem with severe back pain, this has made me unavailable to doing much else other than getting through the day and trying to manage not being eating alive by the pain. I could describe this as being engaged in a relationship with Endurance. And while this had initially been a relationship to support my attempts at living, Endurance holds a slippery set of ideas that have had me shifting from endurance as an act of agency in an attempt to live my life despite the pain, to endurance as the goal in itself. Last week during a brief respite from this pain I realised I had become so enmeshed in Endurance’s ideas that I was no longer taking any new steps to change what was happening. I also realised I was no longer living my life, I was just trying to manage pain, and the participating in and enjoyment of other things that were happening had fallen through the cracks, they had become a casualty of a now tyrannical practice of Endurance.

I gathered up every ounce of energy I could find, I could feel my body become tense in my efforts to hold a new focus, a focus on what steps I could take to bring about some changes and who I would need to bring on board to help make this happen. On the Tuesday of this week I had several meetings, this Tuesday was also the day I was going to begin the changes to cast off the thrall of Endurance’s ideas. This was the Tuesday to get something new happening. One of the meetings was long and tricky and after it I wondered if I would have the energy to follow through on getting a phone appointment with the specialist.

I was holding tightly to my ideas for change and organised a phone consultation that evening with the Rheumatologist who continues to work with me. So the phone call set in place, the tricky meeting behind me I took myself out for lunch to celebrate the steps so far. I then made a plan of how to approach this coming conversation to give the doctor the best information I had, in a quick and timely manner, and make news to him of what I was hoping for in the coming weeks. I wrote down the salient points, sequenced the ideas, gained clarity about my purposes for the conversation and then later that afternoon had the phone call. The doctor was courteous, quiet and listened thoroughly as I explained to him that I was now fighting for my life.

I explained this was not about staying alive, but about being able to live the life I had, my desire to be available to life as it happened and to be able to participate and contribute to events, without pain using up every ounce of my energy and imagination. I asked that if he did not see a link between this pain and the disease that was having its wicked way with my bodily self, then I was asking that he refer me on to someone who might be able to bring about some changes.

Some of the ideas that had allied themselves with “Endurance as Enough of a Goal”  were clamouring for my attention as I held myself tight and pushed down this track of help seeking. Ideas like: perhaps you aren’t trying hard enough; there are other people worse off than you; how dare you demand this specialist’s time, he is a busy man; can’t you put up with a bit of pain; the person at the front desk will be impossible to get past; women your age are very demanding; your language is too flowery and emotional;  etc. etc. I tried to keep my focus on the task of help seeking while  having to push against this cabal of clamorous ideas that were demanding their voices be heard and acted on, ideas that were busily pushing right back against my efforts for help.

The specialist spoke quietly about how we might negotiate the next set of steps we would take to support this effort of fighting for my life, and with new plans in place I finished the phone call. My knees almost buckled with relief and exhaustion and I promptly and messily sobbed with relief that I had been heard so carefully, that I had been able to speak so clearly about what was happening and what I was hoping for in the way of change, relief that Endurance and its allied ideas hadn’t silenced me, and  relief that I could now stop holding my bodily-self so tightly, as I had tried to stay on task and not get fobbed off about stating my concerns and hopes.

Next day had me wondering how I had been able to follow through on this path I’d set myself and I realised that part of what had helped enormously had been my writing up on this blog. The practice of writing up my experiences in my own words, in my own way, not mediated by the need to consider academic or professional conventions, the learning to trust my own voice on my illness experiences when putting down my thoughts and words in a way that made sense to me while also trying to share those ideas with you the reader.

This had me thinking several things. One was perhaps there are times when the opportunity to ‘practice makes perfect’ makes other things possible. Not to gain polish, perfection or a smart finish to a project, but rather to help us have our voice heard and so we can state our ideas clearly. The second thinking was about what happens if people get the opportunity and time to practice the telling of their illness experiences in a forum that receives the narrative with respect and compassion and respects the narrator’s authorship. Does gaining skill in the telling of an illness narrative then enable us to get the sort of help we need from other people even in times when we are stretched to our personal limits and on the very edges of keeping going? Mattingly (2008) suggests that there is a need to develop narrative schemas to organise, remember, then tell of these events and Frank (2007) suggests that if people are given the tools to scaffold their experiences for telling, it can have the benefit of taking people beyond coping and into the realms of of agency, choice and ‘liberation’.

For me the practice of blogging my experiences and ideas about illness has certainly supported my efforts in finding a way past the ideas of “Endurance as Enough of a Goal”, has helped me organise my ideas for the telling, kept me connected to my own ‘voice’, and has brought me closer to the sort of help I need for taking back my life from the margins of just keeping going.