Sharing the unshareable

by Christy Ducker, Writer-in-Residence

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Earlier this year, Northumberland poet Christy Ducker was writer-in-residence for the Catch Your Breath exhibition, Palace Green Library, Durham. As part of her residency, Christy ran a series of writing workshops with the Durham and Derwentside Breathe Easy (BE) group, exploring the ways in which chronic breathlessness might be communicated and understood more widely. Participants visited the Catch Your Breath exhibition and were invited to offer their unique perspectives on breath. Some of the resulting poems and testimony are incorporated into the collaborative film ‘To Breathe’ by visual artist Kate Sweeney. Christy writes about the workshop process, and posts some of the participants’ poems…

In late-January 2019, I was invited to join the Durham and Derwentside Breathe Easy group for lunch at The Red Lion pub in Plawsworth, Co. Durham. Over scampi and chips, we began the process of reading and writing poetry about chronic breathlessness. Our aim was to make the invisible visible, and the seemingly unshareable shareable: by using the right words, by choosing the most striking images, by writing in the most powerful of voices. The group’s chair Jill Gladstone opened the group up to the possibilities of poetry with this:

A Chance 
 
Grab, grasp with gratitude 
this chance to speak. 
To say what? 
Can I do it? 
Can we do it? 
Do we have the courage? 
Do we have the language? 
We have the thoughts, 
mostly hidden. 
But words? 
Denied, or rather not asked for 
over the millennia. 
 
Thoughts fly. 
Words flood. 
Whose language  
do we use? 
Who can share? 

Jill Gladstone

Each member of the Breathe Easy group has a chronic breathing difficulty: some have struggled to breathe for 65 years having had childhood tuberculosis (TB), some have chronic obstructive pulmonary disease (COPD), others are living with pulmonary fibrosis or the impact of lung cancer. Although raucous over lunch, the BE group members have encountered much stigma and silencing in response to their conditions. Like many people who experience breathlessness, they have quietly made their conditions discreet and invisible. Breathing difficulties are often judged or misunderstood in wider society: a waitress at the pub responded to a coughing fit from one BE member by saying ‘don’t worry, a few germs never hurt’. This was well-meaning but missed the point of what it is to live with breathing difficulties, and the attendant terror of cold germs getting into the lungs. Jill Gladstone later wrote in response to this:

Common 
 
Too common cold 
Too common cough 
Too common death 
Too visible 
Too messy 
Too fearful 

Jill Gladstone

During our pub-meeting, and a February meeting at Willowburn hospice, we explored how to put breathless experience into poems. As Havi Carel observes: ‘the experience of breathlessness is total and overwhelming to the sufferer, but also largely invisible to the outsider’. The BE group addressed this in three particularly powerful ways, intending to share their experiences as clearly as possible: by using metaphor as a tool, by promoting first person accounts of breathless experience, and by writing sensory poems in response to the Catch Your Breath exhibits.

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The well-chosen image

The group worked with metaphor, to bring their experiences into relief. Finding the right image for your own perspective can be very empowering, not least because it helps patients to differentiate themselves from one another and avoid being either silenced or ‘pigeon-holed’: whilst one BE member felt her body was ‘a clever machine’, another felt hers was more of ‘a wombat’. We drew on the work of Julia Darling, using in particular her poems ‘Too Heavy’ and ‘Ways of Discussing My Body’. The aim was to carry on Julia’s work in developing new vocabularies for pain and illness, to promote understanding and empathy.

The following three poems show a range of the vocabularies and images BE members used, to foreground themselves and their conditions:

Trapped 
 
My lungs are like chains, holding me back, 
now I’m unable to climb the stony track. 
Life is now smaller. 
 
Carrying my lungs is like carrying 
dense blocks of wood. I’m now unable 
to walk where I could. Ever-decreasing circles. 

~ Lesley Hughes

Ways of Talking About my Body 
 
I’m a clever machine, reacting in wonderful ways. 
I’m a rug chest, tidy and contained. 
I’m a warm day with no wind, keeping my balance. 
I’m the hospital I used to work in. 
I’m a scarf, colourful and shimmering in the sun. 
I’m a landscape with water cascading over rocks.

~ Dorothy Maskery (Babs)

The images of lungs that prevail in British culture need challenging – they are often misleading and, again, silencing for patients. Whilst the heart is associated with love, warmth and even religiosity, lungs are perceived as less glamorous, troublesome, and slightly unhygienic. A range of consequences stems from this: research into heart conditions outstrips by far any investment in research into lung conditions; people suffering from lung conditions encounter a lot of assumption and misunderstanding from others. These themes are addressed in Jill Gladstone’s two poems which counterpoint the status of hearts and lungs in our society:

Hearts and Lungs 
 
You can stuff hearts, 
edible and tasty, 
maybe a treat. 
But lungs 
are fed to the dogs 
as lights.

~ Jill Gladstone

Hearts and Lungs 
 
Hearts are invisible, mystical 
even religious. No sputum, 
no spit. Mysterious. Symbolic. 
 
Lungs can be foul – 
Frequent 
Frightening 
Fatal 
So flee!

~ Jill Gladstone

Rarely broached in society is the reality of caring for a patient. Again, the well-chosen image helped with this – Irene Waggott uses imagery to convey the experience of caring for a lung patient, nursing him through to the end of his life:

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The first-person voice

When sharing a hidden health condition, the first-person voice is key. Breathlessness is often presented clinically in an opaque or refractory manner. Poetic language and first-person accounts from patients can help to overcome this, giving more prominence to the experience of breathing difficulties. Below is a range of poems from BE members which voice very directly aspects of their experience:

When Poorly 
 
Listen, listen, please. 
Plan ahead. 
Ahead – anxiety seeps in. 
Ahead – anxiety creeps through. 
And stays for a while. 
 
It’s new territory. 
New. Different. Uneasy. 
Vulnerable. 
Strong and weak. 
Open and closed. 

~ Jill Gladstone

from Ways of Discussing my Breath 
 
I feel at times as though a bag has been pulled over my head 
I have to fight my way out. I know it will end 
with a huge explosion of coughing. Did I listen 
all those times people told me to? Oh no –  

~ Olive Peak

Decorations 
 
Christmas 
decorations  
are boxed 
and put away. 
Will they find me 
next year? 

~ Jill Gladstone

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Responses to the Catch Your Breath exhibition

On Valentine’s Day 2019, Lanchester Breathe Easy visited the exhibition at Palace Green Library and responded to the art and objects on display. Their perspectives were each completely unique, and added a valuable further dimension to the exhibits.

Lesley Hughes counterpointed her lung condition with Jayne Wilton’s lung-like glass sculpture, building on the artist’s intention to make breath visible:

Glass Sculpture 
After a sculpture by Jayne Wilton 
 
 
The blown glass looks like lungs. 
Mine are ugly and clogged 
but these are so clear and beautiful. 
 
* 
 
Smooth tactile glass. 
Caves worn into it, perhaps by waves 
and not at all meant to be lungs. 
 
* 
 
The glass sculpture of lungs 
is smooth, clear and beautiful – 
not like mine which are so so heavy. 

~ Lesley Hughes

Sylvia Hocking was shocked to come face-to-face with the lung-collapsing device used on her a child. Suffering from TB in a polluted Co. Durham pit town in the 1940s, Sylvia had been resentful and afraid of the device which became a painful fixture for years. This ‘museum piece sprang to life through her eyes, and had the visceral resonance she articulates in this poem:

The Breathing Box 

Now: an exhibit at the library – 
a box with doors which open 
to display a cylinder, tubes, 
needles, a plunger on top
to blow up ‘magic’ to inflate 
an air duct 
to collapse 
 
my diseased lung and promote healing. 
 
Back then: I would lie on a table 
and wait in dread for the needle 
to be inserted, the plunger  
to be pressed, while staring 
at the ceiling. 
 
Now: I stare at the scarring 
of pin holes left after years 
of needles. Was all this worth it? 
 
Yes.  
All to breathe. 

~ Sylvia Hocking

Some group members wrote poems to suggest additional exhibits we might add to Catch Your Breath: the objects suggested were all key to their personal experience of coping with breathlessness. Dorothy Maskery (Babs) championed her walking frame as an essential item to be included in future exhibitions, not least because it enabled her to get to Catch Your Breath independently in the first place:

The poems and testimonies of Lanchester Breathe Easy were collected into a film piece, ‘To Breathe’, in March 2019. The artist Kate Sweeney and I worked with the group at Jill Gladstone’s house, converting her beautiful dining room into a makeshift studio (and being very well looked-after in the process!). This film will continue to tour along with the Catch Your Breath exhibition and will remain accessible online thereafter. The group’s unique voices will continue to have prominence, and assert something of the lived experience of breathlessness.

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On Thursday 13 June 2019, Durham and Derwentside Breath Easy group and Christy Ducker showcased their poetry at Lanchester Community Centre. If you’d like to join us, then you can find further information on the event’s page here.

Christy also led poetry workshops and showcased the work she created with Kate Sweeney in London at the Royal College of Physicians. This is part of their Museum Lates series, which took place on Thursday 4 July 2019.