This page is written by Ruth Chalkley with assistance from Nina Schmidt for the “Dialogic Exploration of Gluten Ataxia” project.
Trains of Thought. Keeping On Track: A conversational journey for coeliacs
This project has started a remarkable journey for me.
One I never imagined I’d be making.
I’ll explain. And describe. And share with you a journey of illness, self-discovery, and I hope, a lot more.
Our journey takes us to many places familiar to you, as I’ve based my journey on the Sheffield Tramway with its three lines, and used this as a means to share my story and my links to the city, its institutions, and the people who I’ve grown to love over the years.
We’ll be using the idea of stops on these lines to take us to the places and ideas and circumstances that have become my journey. Life’s a journey, isn’t it, so it seemed to be a good way to tell my story, help you understand my condition, and share how it has impacted on my life and the lives of others in this City.
I’ve been lucky enough to have a travelling companion with me: not many folk have a fellow traveller like Nina; someone who wanted to hop on board and do some of the stops with me; to shop and have a tea with, to point things out in shop windows, help with the bags, to talk and share; guiding and supporting me in a rather special way, as so many others have on my journey.
But I have to tell you, she is but one of a stellar cast of folk who’ve hopped on as well. Some are the Conductors, who’ve clipped my tickets and who know the whole Network and who gave me my Wanderer Pass; some are fellow passengers I’ve nodded at and smiled. Some are my guests, who fancied a Grand Day Out, who’ve come with me to enjoy it all and bring their sense of fun and curiosity- and some baggage of their own. Some are folk who’ve heard about these trips and fancied it themselves, others are you lot – who don’t yet know where we’re heading, but think it might sound good and want to keep reading on!
If you don’t yet know what ‘gluten’, ‘coeliac’ or ‘ataxia’ mean, don’t worry. Travel Ataxia (North) to learn more. There’s been a time when we didn’t either.
Background
Becoming ill has given my poetry writing a new perspective, which I wanted to share as part of the project. Nina, in working on her PhD thesis, takes a major interest in how the authors of the autobiographically inspired illness narratives she analyses anticipate, and deal with, reactions by the media and the reading public.
I of course have had reactions like this myself, born out of the wish of others to be well meaning, but also in misunderstanding and ignorance.
In my collaboration with Nina, of which one outcome is this blog, I want to explore the idea of patienthood, of transition, and of post-traumatic growth. I feel I am now at a point where I have departed from Mawkish Central, where I found myself just after diagnosis, now travelling to Hawkish East – a liberating direction to be travelling.
My second wish is to develop a positive role model of a notion called Patienthood. How will being a good positive patient help me and those around me? How does the idea of others being empathic help in all this? Well, empathy has several dimensions, or habits, to it. I have found these incredibly helpful on my journey. They are the tickets almost, for the journey. See what you think.
Habit 1: to cultivate curiosity about strangers. Be ‘bothered’ about them.
Habit 2: Challenge prejudices and discover commonalities.
Habit 3: Try another person’s life.
Habit 4: Listen hard—and open up.
Habit 5: Inspire mass action and social change. More of that in a moment!
Habit 6: Develop an ambitious imagination.
This cultivating curiosity about strangers, challenging prejudices and discovering commonalities is what I have done – and still do – with Nina. But this conversation that we started does not end between the two of us. The aim is to see it grow. It’s about trying to show how, in starting an empathetic connection, there are some really important reasons in opening up to people and this is what I am doing sharing my story on line as part of Storying Sheffield.
We may not all be able to inspire mass action and social change, but each of us can change ourselves, and perhaps be the grains of sand that make pearls in other people’s oyster shells!
Ambitious imagination? Now that’s central to me. We visit it with lots of stops on the red Creativity Central line……
The third notion I want to explore on this patienthood journey is something I discovered through counselling.The idea of bravery in illness.
Melanie Greenberg lists these:
Feeling fear yet choosing to act. Following your heart. Persevering in the face of adversity. Standing up for what is right. Expanding your horizons. Letting go of the familiar. Facing suffering with dignity or faith.
Each of these are, in fact, stops on the line. But not for now.
Time to stop! Have your tickets ready….
To read more click the image.