First Published April 5, 2014
The joyful will stoop with sorrow,
and when you have gone to the earth
I will let my hair grow long for your sake,
I will wander through the wilderness in the skin of a lion (The Epic of Gilgamesh)
The previous post was about one of the steps that reconnected me with my words and voice that had dried up as a result of tiredness and intensive medical interventions. It also brought forward the question of what was it like to live inside that period of muteness?
I found it hard to feel anything or at least anything I could put words to. Feelings, without the words to think about them, were unavailable to me. No words = no feelings = numbness = muteness = being cut off from myself = being cut off from others. I remembered a time I was having some therapeutic conversations with a young girl who was finding life’s burdens far too heavy to carry. She spoke several languages and said she was trying to decide on words to describe what was happening for her, she said there were so many words but none of them seemed to fit. After several rests and periods of silence she asked me if I could speak “feet?” I said that it wasn’t a language I knew and asked if it was one she had some fluency in? She said it was the only way she knew what she was feeling when her feet spoke to her about her problems, her feet had just the right words, her feet knew the words that fit. I asked if she would be willing to translate for me and she did this with great facility. We continued to have conversations over a period of time during which she continued to translate ‘feet speak’ for me, and her ability to share her feet’s ‘knowing words’ became a valuable ally to support her efforts to find words that helped her find ways forward.
I wondered about the long periods in history where a person experiencing illness had no legitimate voice. Several writers have identified the place of the patient’s voice in the shaping and telling of illness narrative in western medicine’s development (Frank; Parson;Bradley; Jewson) . Once upon a time, a pre-modern time, people got sick, got better or died. If they were wealthy they could tell a doctor what felt wrong, where the problems were located and what effect that problem was having. If they had no money they had no voice. Then a fascinating path follows as medicine moved into the modernist era with the development of hospitals, disease detection, interventions and the mapping of effective outcomes and the rise and rise of science in the treatment of diseases. In these times of modernity the voice heard was that of medical expert knowledge, the language was medical and the “patient” was not visible. Experiences of illness and effects of disease became collapsed into a generalised set of symptoms and treatments. Patients even told of their own illness experiences through the borrowed language and lens of medical science where physicians became the spokesperson’s for the disease and the medical narrative was reified. In this era of medicine (still very much in evidence today) bodies were acted on, treatments were decided on, and there was no acknowledgement from the field of science and from medical practitioners of their need for patients and their illnesses, and the only role required of a patient was to submit themselves to an expert medical regime and get better. This approach is consistent with practices of colonisation. What was colonised in this sphere were bodies, experience, choice and language in which patients’ voices of protest were silenced.
In these post-modern times patients have claimed the right to represent their experiences in their own voice and in their own language. It has been a demand to make visible the particularities of experience, and one of the noted aspects of patient’s voices in post colonial medicine is the absence of both medical professionals and medicine and the unashamed desire on the part of the person with an illness to make their own meaning of the illness experience and develop an identity beyond that of a patient. This post modern voice is the voice found in illness narratives.
So back to joining some of the dots noted earlier in this post, when rereading what I had written at the top of this page I noted the use of the symbol = . I thought of this symbol joined up and it started to look like a fence, a boundary and I remembered the work of Michael White (2011. p.87-88) in which he noted the therapeutic use of externalising a problem when the problem is intangible, and it then becomes “virtually impossible for people to distinguish the sphere of influence of the problem, to distinguish where it starts and where it finishes. Through externalising conversations, problems become bounded … [and once bounded ] it ceases to represent the totality of a person’s life. ” Over the years I have found this idea of bounded problems to be such a relief, such a hopeful and do-able concept when working with problems that plague both my own and other people’s lives.
Looking at the sphere of influence of illness and exhaustion on my voice, my attempts at identifying the limits of this problem, refusing its totalising attempts, noticing how the problem had, in the slippery way of such problems, used tricks to double back and bind/corral my voice instead, reduce it to muteness and my feelings to numbness, had me looking for other ways to help my voice escape this imposed silence. I thought about other times I have experienced a loss of words and what reconnected has me with the power of language, and I realised that for me re-connection is made possible by my relationship with poetry.
The poet, Audre Lorde writes, “. . . poetry is not a luxury. It is a vital necessity of our existence. It forms the quality of light within which we can predicate our hopes and dreams toward survival and change, first made into language, then into idea, then into more tangible action. Poetry is the way we help give name to the nameless so it can be thought. The farthest horizons of our hopes and fears are cobbled by our poems, carved from the rock experiences of our daily lives.”
So via poetry I shall keep ‘cobbling together’ my ideas and curiosities despite illness and exhaustions. I have included a fragment of poetry at the beginning of this post, not because it has a particular fit with the ideas explored here, but rather because it doesn’t.
Hehehehehehe ………. for someone who recently had no words this is quite a long post….hurrah…words are back.
Illness Narratives 