Since August last year, I have supported the poet Ruth Chalkley in her contributions to the blog Storying Sheffield. Our joint efforts to reflect on living with serious illness, and the many effects this has on the self, bear the title ‘A Dialogic Exploration of Gluten Ataxia: Lived Experience, the Medical Condition, its History’.
Ruth lives with this rare, progressive condition on top of having coeliac disease. Her doctors describe what’s happening to her as an autoimmune double strike to gluten. Effectively, this means that in her case, gluten does not only cause an autoimmune reaction that harms the intestines, but that the protein found in our most common grains (such as wheat, rye, barley) also affects her nervous system in manifold ways. Even following a strict gluten-free diet, the effects of ataxia (including physical disability, epileptic episodes) cannot be reversed. At the most, so it is hoped, the diet can help slow down the deterioration of Ruth’s health.
Ruth probably would not call herself a poet as straightforwardly as I do here. Yet from where I stand, I can see that the bundle of creativity that is Ruth lives and breathes poetry. I remember how much it surprised me when she reacted to the death of Robin Williams last year through poetry, and yet, on second thoughts, perhaps it shouldn’t have.
The literary scholar Belinda Jack, writing in the Times Higher Education, has put in a nutshell some of the advantages of poetry:
‘Like the novel, poetry can tell us about human experience, but it does this in its own language and not the more straightforward language of prose. It works by suggestion, but this doesn’t mean that it cannot console, teach, amuse, enlighten, mimic, disconcert and so much more. It can capture – or cause us to reconstruct – experiences and feelings that we might otherwise not be conscious of. Poetry’s use of language is at the furthest extreme from the self-help book, which is often dogmatic, insistent, reductive, bullying even.’
Poetry can capture the mundane as much as the extraordinary, and in much of Ruth’s poetry writing, as in her experience of illness, it seems to me that the mundane and the extraordinary converge.
But Ruth of course has many facets to her identity; in addition to being a poet, she is also a patient, a former teacher in early retirement, and an activist for Ataxia UK. She is a wife, a friend to many, and a mentor to some.
Much of our collaboration has been over the phone and via email. We met and still meet whenever she comes to Sheffield, which is for treatment at the hospitals here. But it’s been mostly across a distance that we talked to each other, exchanged ideas, pinged drafts back and forth. I became her ‘ampersand’, her link to Sheffield, to the University, to Brendan Stone and to a wider, academic community.
The nickname, though playful, indicated that I suddenly had a real responsibility towards an individual. Someone’s trusting me here, I thought, and I was wondering if I had yet earned that trust. The collaboration with Ruth, from early on, and in more intense ways than I had prepared myself for, brought home the challenging reality of the topics – of illness, and of dying – that I deal with when analysing the autobiographical literature that forms the basis of my PhD work. In my own thesis, I necessarily create a certain distance between myself and the stories I analyse. Collaborating with Ruth, I was unable to do so to the same extent. And yet, that’s something I am glad about.
Ruth in turn soon began to sign off emails as ‘Umlaut’, taking joy from the fact that I am a native speaker of German, yet wanting to express something about herself on a more metaphorical level too – altered sound being something she would use to describe her own changed, and changing, circumstances.
I remember how ‘careful’ I tried to be with her in the beginning, knowing that, simply due to the nature of the blog project, she would have to open up to me about what most people consider highly personal stories. I wanted to offer the same, so that our exchange wouldn’t turn into a one-sided and potentially exploitative endeavour. Yet I also wanted to provide her with a more objective, analytic view that I knew I could bring to her blogging; helping her by reading what she’d sent me wearing my editor’s hat. Trying to strike that balance meant that, especially when we were still getting to know each other, I spent a lot of time editing emails before sending them, and often worrying how she would react to them. Over the months, I learnt that there were times when, due to having to prioritise work on the PhD thesis, on conference papers, and on teaching, I had to tell her to be patient with me, and sometimes I couldn’t help but feel guilty for not being able to reply for a week or two.
But Ruth took this in her stride. In fact, she taught me that it was not so much the result of the blogging – though of course this also mattered, as a lasting legacy and resource she continues to create online – as it was the practice of drafting ideas, getting in touch with people about the blog and ideas for individual posts that she experienced as therapeutic.
As cheesy as it may sound, it seems that sometimes, the journey is indeed its own reward. As our joint work is coming to a close, Ruth is continuing that journey without me. The ampersand is becoming more and more dispensable; it’s time to withdraw. Yet I am pleased to have been allowed to act in this role for a little while. Working together and contributing to Storying Sheffield I believe has been a valuable experience for both of us. Without a doubt, I will remain her number one reader, and am looking forward to seeing where she takes her blogging, and her poetry, in the future.
Explore the fruits of our labour here, and watch the blog grow as Ruth continues to expand it: http://www.storyingsheffield.com/project/gluten-ataxia/
 Belinda Jack’s full article on the rise of the medical humanities and the therapeutic effects of poetry: http://www.timeshighereducation.co.uk/features/the-rise-of-the-medical-humanities/2018007.fullarticle