‘In bed I cut words’; the art, the making, the journey.

Where to start. 

A year after my last blog I did write some blog post - but only in my head. I ‘write’ at times when I have no access to my phone or iPad, or my body is simply not able to go beyond mere thoughts. Thus these words don’t see the light of day. Some scribbles are noted in my private notebook. Below is a compilation of notes collected/written over at least seven weeks or probably much longer. I hope they make sense of a complex situation.

IN SHORT

There are very contrasting realities going on at the same time. The ever increasing levels of debilitating illness ME I live with for 26 years; added diagnosis and related test and medication, living in care, a creative mind and the ability to observe nature. All are sides of the same story. Intertwined they resulted in the publication of probably my most important Book: In bed I cut words

The momentous moment my book ‘In bed I cut words’ arrived
in my nursing home room.

How does one square this? To be honest, with great difficulty. At times I experience such deep sorrow and grief of the many losses. My creative mind remains accessible while my body is increasingly unreliable to cooperate, which mean the creative thoughts stay thoughts. The positive aspects, like my observations of nature, I share occasionally on social media, the other more difficult ones I keep to myself, explore in my mind or share with very few carefully selected others.

IN MORE DETAIL:

THE BOOK

I never thought I’d write another book again.  

And in a way I didn’t.

And in a way I did. 

A book with a selection of collages made over a one year period starting a year after my move into care April 2021 - aged 59.   

I was told these collages could make a ‘guide to what it is like to live in care’ as they were spontaneous, intuitive responses to my life in care. Perhaps for care staff to create a different perspective. Or support for others in my situation.

Recce at GOMA

In November 2022 at the recce for the I brought the dream of flying  exhibition at GOMA Gallery of Modern Art, Waterford. I said: “maybe I don’t need to have this exhibition, just a book with collages. A bit like how Invisible Octopus  poem came about after a period of exploring puppetry in terms of illness”. The simple wording and twelve images said perhaps more than a puppetry film… Well. I think it did.

We obviously did have the exhibition at GOMA in January 2023, and at Creative Brain Week March 2023. It is a true wonder what happened with that, from that, and since that.

I created more collages for a few months during and after the exhibition until my hands and brain made it impossible to continue. I put the collages scrapbooks away. Out of sight. In the wardrobe before giving them to my co-artist Caroline and to Waterford Healing Arts for safekeeping over a year ago. And to perhaps have them publish a book on my behalf. Under one major stipulation: “I do not want to take part in its creation.”

It didn’t happen that way.

A few months ago spurred on by the publication of ‘Art by their Side’ from the Irish Hospice Foundation, the collage book idea kept knocking on the inside of my skull. 

“Do you hear me. We want out.”

On a brave morning late April 2024 I emailed Lismore graphic designer David Murphy from Red Heaven Design about a collages book. Quoting the ‘poem’ which later inspired the title of the book.

In bed 

I cut words 

until I can rest 

in a world 

where loss and pain 

live alongside 

beauty and hope

(Corina Duyn)

We worked together before. I handed him the collage work to make into a book. Without me being involved.

Famous last words.

As it turned out I have been involved in every step and it has been both challenging and good for my brain. I am in need of the creative conversation. A creative collaboration. It is my lifeline.

And from a simple book with images, it has morphed into an astonishing beautiful book with a collection of images and written reflections. Not mine. But by some amazingly insightful gifted people. I could not have done this without them.

Collages at GOMA. Images from Case study

“To reinvent the medium of sharing is so cathartic and powerfully positive. It’s just as cathartic as the art itself. I love that your work can transcend to exist in a new place to be seen by more eyes.”      

(Moira Dillon. MEAI)

There were many days I felt the need to give up on the book. It was and still is overwhelming in more ways than I can express here. But the thought that from my huge challenges I can make perhaps a difference to other people’s experiences of illness and care kept me going. As well as the beautiful collaborations and support I received along the way at times from unexpected sources. 

For example when I rang the Samaritans a few months ago. First time ever in my life and had a wonderful conversation with a kind man who totally understood the challenges of being in care at a young age. Of losing my home. He really got it without me having to explain. And commented on how this (then) book-to-be and my concerns about it, and my previous work could potentially influence people’s minds in years to come. It was not said in a ‘This is what you need to hear’ kind of way. It was all said with such understanding, compassion and belief. It was a surreal experience.

Now the books are here. In my room. All 200 of them. And had a tiny but very significant ‘book-opening- celebration’. See more below at my hopes for the book. But first the other side…

Shirley (activities)  & Ian (maintenance) bringing in the treasures

The joy. Followed by the realisation of the story it holds…

ILLNESS & CARE

The ever increasing challenges exposed on me by Myalgic Encephalomyelitis (ME) over the past year result in further feelings of loss. Of grief. As well as fear during a full body paralysis episode which was unfortunately overlooked. I can hear and see. But can not move or speak. When after four hours I was found my speech was slurred and I was in immense pain, resulting in a trip to the Emergency Department. 

I am grateful to have had a positive experience with both the paramedics and hospital doctor who understood ME and acknowledged the decline in health I am experiencing. 

It has taken me a month to partially recover from this episode. 

5 days after the paralysis episode…

Days after, and at times still do, I sit with my sorrow. Reliving the moments, the episode, the incident, including when I believed I was dying. Which was actually a peaceful moment. How ever long that lasted I don’t know until I came round and realised I could not call for help.

I do cry at times of the challenges my body throws at me and try to understand the complexities of life in care. This deep sorrow which can perhaps be perceived as me being difficult. I also value the moments of good support I have here, and necessary outside support. 

There are more medical tests I had vowed to never do again. More medication which helps one problem but affect the ME in a negative way. Years ago I said I want quality of life, not quantity. No more big tests. But where can one clearly draw that line and say no. It all requires a constant evaluation of life. With illness. In care.

The overriding thought “I want to go home” is probably to not have to feel this way. To go back to a life. Then I cry a little and revert back to my long list of self care, of self compassion and try to find my way forward again. I usually do.

The book - in a way - is as a result of all of this.

And so is this (long overdue) blog. 

WHAT SUSTAINS ME

My ability to observe the world in the garden remains. Although I am very little part of it. I share images or stories on social media of what I see from my bed. Perhaps giving a skewed perception of my reality.

Nature makes me think of this quote by Charlotte Naughton about her aunt Ann Bruce: 

She told me that, for her, nothing tasted right any more, literally and metaphorically: “I can still enjoy things like the first snowdrop, bits of nature coming to life. But there’s not enough. 

My life is still good. What’s gone is my capacity to engage with it and embrace it and enjoy it.” 

However  I keep looking and being enthused by seeing the young fox ‘meditating’ by the tree. Or watching the friendship between hens and ducky. And observing a small flock of blackbirds devouring the bright red holly berries in the space of a few days. 

Creative thinking and conversations are a vital lifeline too.

…  It’s as essential as breathing

Or your heart beating, alive 

Breathing, smiling, living, hurting, loving

Sending nourishment to your whole body and mind … 

 

(Pascale De Coninck)

I deeply value kindness, respect and understanding. For my own well-being I spend most time in silence on my bed. I look after my house plants at the weekend. When able, or necessary I listen to meditations, with headphones on needs be. I like the lights off, and after 5pm the curtains closed. I change from being on the bed, to being in the bed.  I have battery operated candles near the Buddha sculptures in my room. As gently as memory allows I reminisce about the past, and what the future might bring. Where to go from here.

BACK TO THE BOOK. The small but beautiful book-opening-celebration

As I am not able to have a public launch I had a very small but beautiful ‘book-opening-celebration’ in my room with the three women who made my creative life in care a possibility, a reality: Maeve Butler from Waterford Healing Arts/Réalta  who answered my call for creative support through Catherine Drea back in 2021. Which brought Visual Artist Caroline Schofield  into my room. We had an extraordinary creative journey together. 

And Katherine Collins from Creative Waterford who was determined to secure funding to keep our work going beyond the first exploration phase supported by Waterford Healing Arts and funded the exhibition. Of which she said at the launch: “… two artist working collaboratively, showcasing how creativity can take place in unexpected places, in a nursing home […] it has broken down boundaries…” (about 7 minutes in)

It is through this art support I have funded the creation and publication of In bed I cut words. This limited edition of 200 books is free. Although to help me go ‘full circle’ donations are gratefully accepted to Waterford Healing Arts, at readers own choosing.

With Caroline Schofield

‘In bed I cut words’

With Maeve Butler

With Katherine Collins

Most copies are going out later this week/next few weeks to care organisations and those involved in healing arts: for example Community and Residential Care programs like Caru.ie and communication initiative Time To Talk  at Irish Hospice Foundation. To Creativity in Care (Scotland) for compassionate care programs and socially engaged arts. To libraries, arts offices with a track record of arts and health and arts and disability. Réalta, Creative Ireland; disability organisation and advocates. And all those whom have made this project possible.

As it stands - all the 200 copies are pretty much spoken for. What an honour. There will be an online version at some point in the near future.

Caroline, Katherine, Maeve, and my sculpture ‘Wisdom’
moving to the Art collection at Waterford Healing Arts.

My hope is … 

that the book will be re-published in paperback version in greater numbers. But this is outside of my ability to organise, fund, or distribute. I simply handed this thought to the universe and hope someone will take on the baton. If that is what is to happen to reach many more minds. 

For example books to the others under 65 in nursing homes. See Wasted Lived Ombudsman report. In May 2024 there were at least 1242 people under the age of 65 in nursing homes. 

Of which I am one. 

Maybe I can be one ‘less wasted life’.

Other books for training in community care, in healthcare, doctors, but also for bookshops, for galleries? Some of these ideas and wishes are my own, some are trusted to me by those who are deeply aware of the work. 

“This is a work of Art”, Caroline told me. And I trust her.

I am proud and at the same time hugely overwhelmed.

In bed I cut words

My gift to the world.

About the necessity of Art.

In illness.

In care.

In life.

This book came into being while life is severely curtailed by ME 

and through the collaborations with some beautiful minds along the way.

For any book related news and updates please visit:

https://www.corinaduyn.com/site/in-bed-i-cut-words

For the story and links about my now 26 year creative journey with ME please visit:

https://www.corinaduyn.com/site/

Be well

Corina Duyn

Artist in care