CHRONIC PAIN – IT’S so difficult to explain in words but it impacts every aspect of your life and the life of those close to you.

For me, overnight I went from a very independent woman, married less than a year with so many plans for my future – and I turned into a version of myself that was almost childlike.

I depended on my husband and mother for everything. Food, clothes, medicine, socialising, rent, income support, medical visits – everything. I started to feel like I was no longer entitled to an opinion in my own world because I was entirely dependent on those around me.

The guilt associated with cancelling last-minute plans and not being able to attend big events was tough, but watching my husband carry our lives on his shoulder was close to unbearable.

Originally from Carlow, I’m an artist and illustrator based in Cork city. My educational background is in Fine Art Printmaking and Graphic Design. In 2015 when I was 32 I had an accident that has left me with chronic sciatica and nerve problems in my back and legs.

I’d known next to nothing myself about the realities of living with chronic pain before the accident. Of course I realise now that thousands of people live with chronic pain, but this was all a total shock to me.

Art created by Ciara

After my accident I had the most intense feeling of having ‘fallen into a rabbit hole’. My new condition meant that I was often only able to experience the outside world through a filter – secondhand through other people, through the TV or the internet.

My situation, of only being able to receive this distorted, filtered experience of the outside world, gave me a connection to Alice in Wonderland.

And then during a particularly lonely period, my husband suggested we get a pet so I would have company each day. When we got to the pet shop I found the perfect little creature to keep me company. A little white rabbit we called Opie. I knew then my fate and connection to Alice was sealed!

Alice fell and I fell too.

Opening up the world

My new reality of living with chronic pain was really difficult for me to communicate to my family and friends, however much they wanted to be helpful and supportive.

They couldn’t understand why I wasn’t getting better, so, from down through the rabbit hole, I started to illustrate my experiences as a chronic pain diary, with the thought in mind that a picture tells a thousand words.

I didn’t want to look back at my time with pain as time wasted: I wanted something to show for this experience. And so My Chronic Pain Diary was born, using delicate lines and bright colours to balance out the weighty themes.

And the diary opened up the world for me in a way I wasn’t expecting. It gave me something to work on and something to work towards. Drawing and creating my diary was a way for me to claw things back. I started to see my value more and more as time went on. I began to adjust to how my body now worked and started to contribute more in my relationships.

I was so delighted when my illustrations for My Chronic Pain Diary received a Silver A’design award, a commendation from the Institute of Designers in Ireland, and I was shortlisted for the Association of Illustrators, World Design Award. I had the opportunity to work with Pfizer Pharmaceuticals on their chronic pain campaign at the European Pain Awareness Conference in 2019 and the following year I worked with Toyota Mobility on the Toyota Mobility Foundation’s Going Further campaign.

Taking the next step

Last year I realised I had reached 100 illustrated diary entries, and so decided to take the next step with this project. I applied for funding through the Arts Council’s Arts and Disability Connect scheme, managed by Arts & Disability Ireland. I was thrilled to be successful in that application and so I have now been able to develop a three-part project for September this year – which also happens to be Pain Awareness Month.

The first element is a printed book with over 100 illustrations from My Chronic Pain Diary. The second part of the project is an exhibition at Cork Printmakers of digital prints from this book. Aideen Quirke, the Director of Cork Printmakers has been such a remarkable influence on this project. At times where I was losing faith in myself and my big ideas, Aideen was there to push them forward, help me develop them and see the value in what I was trying to accomplish.

The third part of my project is an art trail of illustrations from the book in 2- and 3D in shop windows throughout Cork city. These windows will be decorated and filled with illustrations from My Chronic Pain Diary, embroidered artworks and origami characters with colourful fabrics and lighting, along with video pieces of short animations of some of the illustrations.

Accessibility is very important to me so by using shop windows a person can walk, cycle, use a wheelchair or stay in the car to travel from window to window. Keeping accessibility in mind, each window will have a QR code, which when scanned will send people to a soundcloud file on www.mychronicpaindiary.com where they can hear an audio description of the contents of each window. There are 15 shops involved in the art trail, and we’ll be running guided tours of the windows on two days in September, one being Culture Night.

Cork City Council Arts Office funding meant I could hire a project coordinator, Aoife Claffey who is a visual artist based in Cork city. I created the artwork but Aoife is helping it come to life. We put all the artwork together in St John’s Central College and then she’s installing all the artwork in the windows, doing all of the heavy lifting, and coordinating everything. I couldn’t install the artwork without her. She’s not afraid to try things out, she drives me everywhere and her enthusiasm for the project is so refreshing. I’ve been living with these images for a few years now so having her new perspective is brilliant.

I’ve also been supported along the way in this journey by Cork Chamber, Notes to Cork and Crowley’s Opticians. Support has also come from St John’s Central College, The Paint Store in Ballincollig and Sooner Than Later in Dublin who printed the books.

The people that matter

Chronic pain is a very polarising experience but one thing it does is show you the people and relationships that really matter to you.

The people that step away, you learn to let go of – but the people that step forward are gifts you probably took for granted before now.

To find out more about the My Chronic Pain Diary events taking place in Cork in September, visit Ciara’s website. Ciara Chapman is an award-winning artist living in Cork city.