In this piece for the project “A Dialogic Exploration of Gluten Ataxia“, Ruth explains why Sheffield has become a special place for her, and reacts, from a creative writer’s perspective, to the photography project ‘The Image Speaks‘ [.pdf] that Nina was involved in earlier in the year as one of a group of PhD researchers from the Arts and Humanities here at Sheffield University.
A photo of a pot of Sheffield Honey that I’d brought back with me as comfort food after my diagnosis was confirmed. For someone who had been there to support me. I could not pay her, or repay her, so I gave her this image as something that somehow encapsulated for me what all this has been about. Sheffield Bigheartedness.
I did not know at the start that any of this would be happening to me, that so many friendships and contacts would arise, and that Sheffield would loom so large in my life. But it has. And why would I send a photo? So it could be embedded in an email, along with silly bits of clip art, anything that somehow captured what I was trying to say. And these feature in a growing conversation about many things, including life, death and almost everything quirky in between.
This narrative begins in a rather unusual way, with a chance phone call, a casual enquiry about something I was interested in and had read about in a magazine at the hairdressers in Redcar. This was in 2012. It was an article on Rhythmic Auditory Stimulation, which sounds rude but actually isn’t. It’s to do with Dance being used to help people with Parkinson’s. I was in the process of getting my head around the news that what was now happening to me was likely to be much more threatening than my doctors originally thought, and I was seeking out any information I could find about things that could help with my neurological disorder.
I rang the University and spoke to someone who, it turned out, has become a really significant person for me. Our correspondence led to my journey being changed, the points being switched, because in seeking to support me through the work she did, it ultimately led to me to becoming a writer for Storying Sheffield. It is a story of trust, mutual respect and a common belief in the idea that possibilities can be grown into realities, and shared. Through humour, persistence and that rather special thing, that could almost be a class of train, Serendipity. Railway metaphors will abound in my blogs as I and others describe the lines, the stops and stations, the network of support and the links between your University and the Royal Hallamshire Hospital next door.
This person, known between us (and here) as Amp, has been the cornerstone of a journey of rehabilitation for me, and without her this would not be happening now. She has been my champion, a guide, a supporter and a cheerer-on; a wise mind, and a patient one; someone who has been able to reach out and be there for me.
My thanks to you now, Amp, as you see this project happen. And to someone who too, took a gamble on me, and heard, through my stumbled words, on paper and in conversation, a story they felt embodied this notion of civic engagement, of the University’s drive to allow ‘porosity of thinking’ between itself and its city, of giving folk a chance.
You’ll hear more of porosity and permeability when the experts here write of gluten – the stuff that makes bread have that wonderful stretchy feel to it that makes breadmaking so appealing. Gluten also has the ability to do damage to the body in a whole range of ways, not least in the brain, as the components of gluten can start crossing the blood-brain barrier. When coeliac disease was first discovered, it was known as a disease of the gastro-intestinal tract, but interestingly, it was also known as the Great Mimic, as it seemed to earlier generations of doctors as being like many other conditions in its symptoms. It has a younger sister as well now; non coeliac gluten sensitivity. With the help of medical experts, we’ll be sharing more about this. It’s a complicated story and an emerging one. And much of those discoveries have been made by the clever folks here in Sheffield, and through their networks and collaborations. You may not know this, but the work done in Sheffield has a worldwide reputation.
My academic partner in this creative adventure, Nina, also has coeliac disease. About one in every hundred people have it. It may well be more than this, as testing has got more sophisticated only recently.
It affects people in many ways; there is a whole spectrum of symptoms from bowel and stomach problems to rashes and even neurological problems. I have gluten ataxia, the neurological manifestation of it, a condition that affects my balance and coordination, and sometimes speech and swallowing. Someone in the ataxia support group I run described it to me as having ‘blighted’ their lives. It’s tough. Not just for the person with it, but for their families too.
In wanting to explore my journey, I was offered the chance to work with Sheffield University and the Royal Hallamshire Hospital where I have been a patient for almost twenty years, and where I was diagnosed by the neurologist Professor Marios Hadjivassiliou, who has since become the world expert on the condition. I was one of the first in the world to be diagnosed with gluten ataxia back in 1998. This was really significant because it required for me to go strictly gluten free. I made a complete recovery and had good health for some eighteen years. I did not know then how significant this was. Then, about three years ago, I became ill again. But this time something occurred that is rare. I had an autoimmune double strike reaction, where the initial symptoms returned with a vengeance and were to be much more serious. I came back to Sheffield as a patient again. And the long wait began; to explore what this new condition would entail, what was known about it and how I might fare. Because the body has been primed to fight back and this gets triggered, much more damage ensues: this is described in the literature as being progressive and neurodegenerative.
So this project is, for me, about the chance to give something back; to thank some of the key players in my life today, and find ways to explore this journey of discovery that is made by the researchers more widely. It is a testament to the work being done here in Sheffield. I am privileged to be playing a part in it.
I agree with Nina that those living with coeliac disease, both with its gastrointestinal symptoms, and in the ataxic form I have, regularly find themselves in situations, both in public and private, in which they must decide whether and how to share knowledge of their condition. By revealing our circumstances we know we may encounter issues of misunderstanding, ignorance and, sometimes, blatant scepticism concerning the reality of the disease.
For me this journey is one that will cross these critical zones in different ways, because my symptoms and signs are becoming more apparent and therefore more visible, and so too are the territories of acceptance and understanding changing the relationships I have with others; family, friends and those who were colleagues.
People are changing in their reactions to me as I change. Not unduly so. There is more observation, an experience that is both wearing and wearying. And at times dispiriting, as Amp would say.
But often it is the idea that help is required. That’s hard to square. Yes it’s needed, but I’d like to choose to have this and be the one asking, rather than by being told I need or want help. Sometimes you give in to make it easier for the person; so they feel they are doing right. Tough tango.
As Nina writes, in a society in which presumed health is (still) the norm, sharing a story of a rare and complex condition would involve taking risks. She says in her ‘Image Speaks’ essay: ‘Sharing personal perceptions and experiences of illness therefore is a political, even ethical, act as much as it is one of personal importance.’ Upon reading this, I knew that our academic partnership would flourish and the story of that happening would be, if we got it right, something that could be not just personally important, but have resonance and significance for others as well.