Story Exchange
The Story Exchange was an online programme of creative workshops bringing together people with lived experience of chronic cough and people working on the research and treatment of chronic cough, to participate equally in exchanging stories.
Between March and June 2022, creative
facilitators with expertise in writing, poetry, storytelling, visual arts
and comedy led 24 participants through a creative process of
sharing their experiences about chronic cough and building a rich
collective picture of chronic cough and its impact on people’s lives.
Cough is...
Cough is…
Cough has taken over my life.
Cough is out of control, a hypersensitive nerve response.
Cough is part of me.
Cough is mysterious, vague, difficult to pin down, slippery.
Cough is complex.
Cough is…
Cough is misunderstood.
Cough is with me all of the time, even when I am not coughing.
Cough is annoying; cough is irritating; cough is embarrassing.
Cough is being offered sweets, bay leaves steeped in tea, glasses of water, honey and lemon.
Cough is dirty looks from strangers.
Cough is being able to clear a train carriage in three seconds.
Cough is…
Cough can be funny.
Cough is ruining my life.
Cough is an ugly feeling. if it were an animal, it would be a hyena.
Cough is a bully, a villain, a terrorist, an alien, a black slimy amoeba, a monster shark.
Cough is not going to stop me from living my life.
Cough is…
Cough is the enemy.
Cough can be defeated. It will not defeat me.
Cough is a journey.
Cough is being part of a tribe, a connector, a community builder.
Cough is not feeling alone, not being the only one.
Cough is lonely.
Cough is…
Cough is what I am known for. Pals say, if you didn’t cough, it wouldn’t be you.
Cough is a loss of a past self, an experience to be grieved. Loss of singing, loss of quiet nights in front of the telly.
Cough is a thief. Cough has stolen my voice.
Cough is tangled in my body with back pain, rib pain, muscle pain, leaking, aching, not sleeping.
Cough is unpredictable, a source of anxiety, a source of stress.
Cough is connected to the brain.
Cough is not all in my head.
Cough is…
Cough is exhausting. I am so tired.
Cough is three-dimensional, multi-dimensional, two headed, two sides of a coin.
Cough is new connections.
Cough is not being a victim.
Cough wants to destroy me.
Cough is…
Cough is counting and listening and feeling.
Cough is emotional. An emotional burden. An emotional toll.
Cough is new treatments that will work, for some people, just around the corner, Cough is hope.
Cough is not, just a cough.
Story Exchange Facilitators
Jarek Adams
Jarek is a writer who has created books and plays that bring voiceless characters to life, and which explore the links between writing and wellbeing. She has an MA in Creative Writing and Wellbeing, and continues working on writing for wellbeing projects including podcasts and community based writing projects.
The most rewarding part of facilitating the Story Exchange workshops was helping to release the experiences of the participants and finding they were not alone in their experience of chronic cough. Sharing stories with all the participants brought to light some extremely difficult experiences, but there was also humour and camaraderie in talking about everyone’s personal journey with their physical and mental health.
Laiqa Miriam
Laiqa is a UKCP Trainee Integrative Therapist who has been working for a decade as a community researcher, designer, and facilitator in radically-led creative spaces. Across all her roles, she draws from her background in Intersectionality, and works at the crossroads of the visual arts, mental and somatic health and wellbeing, and community engagement.
What has stayed with me most from the Story Exchange are the visceral images and phrases that came out of our creative exercises with the participants. I remember the lasting visuals of chronic cough as a “bomb” ricochetting through the body or a “creeping centipede” stuck in the throat. And, I often come back to my experience facilitating the Story Exchange when I want to remember the power of words and images in translating the intangible and unexplainable into something evocative and moving.
Rachel Bower
Rachel is an award-winning writer and creative facilitator. She is the author of two poetry collections and a non-fiction book on literary letters. Her poems and stories have been widely published, and she is passionate about the power of creative writing and storytelling, particularly in relation to health. Her work is represented by Cathryn Summerhayes at Curtis Brown.
I learned so much about chronic cough during the Story Exchange, especially about the role of the brain and nerves. I also loved learning new creative ways of facilitating from other artists. The Story Exchange participants shared so openly and generously – I found this very moving, and it was an honour to be involved.
Sally Pomme Clayton
Pomme a performer and writer who has been creating performances, books and plays of stories all her life. Her shows focus on powerful female protagonists, such as ‘The Frog Princess Punked’ a feisty feminist fairytale with girl punk band and live projections. Pomme has written 16 books for children and has published ‘The Mighty Goddess- world myths’ for adults.
Hearing everyone’s stories about cough was the most valuable experience of being part of Story Exchange. The courage, determination, and even humour that was part of these stories was moving and inspiring. And I felt honoured to listen to them. Hearing the researchers talking about cough in such fine detail was staggering and impressive. Sometimes I had the impression that, as they were talking about cells, or the inside of a nerve, or receptors, I was travelling into outer-space! Following a nerve was equivalent to a vast and unknown journey into another world!
Alex Dunlop
Creative Story Prompts
These are some examples of the kinds of creative activities that were developed by the Story Exchange facilitators and completed by participants in the workshops.
COUGH OBJECT
Choose an object that you feel is connected to your cough. Hold it for a moment. Where did it come from? What does it mean to you? Where does it belong?
Pick up a pen and write freely about the object for 2-3 minutes.
COUGH METAPHOR
Thinking about your unique relationship to cough, answer the following questions…
If cough was a colour, what would it be?
If cough was a shape, what would it be?
If cough was a texture, what would it be?
If cough was a animal, what would it be?
If cough was a landscape, what would it be?
If cough was a building, what would it be?
A DAY IN THE LIFE…
Think about a typical day for you. Think about some of the small details of your life that reveal your relationship or connection with cough – things that happen to you, things that you experience, tasks that you complete, daily routines, habits…
Write down three examples of these ‘daily life details’.
COUGH CREATURE
Imagine your cough is a creature. What does it look like? What does it feel like? What does it smell like? What does it do? How does it move?
Draw your cough creature.
A LETTER TO COUGH…
Write a letter from you to cough.
What do you want to say to cough? What do you think about cough? How do you feel about cough? What do you want from cough?