CHRONIC PAIN – It’s so difficult to explain in words, but it affects every aspect of your life and the lives of your loved ones.
For me, I walked away from a very independent woman overnight, got married for less than a year with so many plans for my future – and became an almost childlike version of myself.
I was dependent on my husband and mother for everything. Food, clothing, medication, socializing, rent, welfare, visits to the doctor – everything. I felt like I no longer had an opinion in my own world because I was completely dependent on my fellow human beings.
The guilt associated with canceling short-term plans and not being able to attend big events was harsh, but seeing my husband carry our lives on his shoulder was almost unbearable.
Originally from Carlow, I’m an artist and illustrator based in Cork City. My education is in the field of fine art printmaking and graphic design. When I was 32 years old, I had an accident in 2015 that left me with chronic sciatica and nerve problems in my back and legs.
Before the accident, I had known next to nothing about the reality of living with chronic pain. Of course I now realize that thousands of people are living with chronic pain, but it 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 could often only experience the outside world through a filter – second-hand through other people, through television or the Internet.
My situation of being able to receive only this distorted, filtered experience of the outside world gave me a connection to Alice in Wonderland.
And then, at a particularly lonely time, my husband suggested that we get a pet so I could have company every day. When we got to the pet store, I found the perfect little creature to keep me company. A little white rabbit we called Opie. Then I knew that my fate and the connection to Alice were sealed!
Alice fell and I fell too.
Open the world
My new reality of living with chronic pain was really difficult for me to convey to my family and friends, as much as they wanted to be helpful and supportive.
They couldn’t understand why I wasn’t feeling better, so I started, down through the rabbit hole, to illustrate my experience as a chronic pain diary, thinking that a picture is worth a thousand words.
I didn’t want to look back on my time with pain as a waste of time: I wanted to show something for this experience. And this is how My Chronic Pain Diary was created, which balances the weighty topics with delicate lines and bright colors.
And the diary opened up the world to me in a way that I did not expect. It gave me something to work on and to work towards. Drawing and creating my diary was a way for me to get things back. Over time, I began to see my worth more and more. I started getting used to the way my body worked now and started adding more to my relationships.
I was delighted when my illustrations for My Chronic Pain Diary won the Silver A’design Award from the Institute of Designers in Ireland and I was nominated for the World Design Award from the Association of Illustrators. At the European Pain Awareness Conference in 2019, I had the opportunity to work with Pfizer Pharmaceuticals on their chronic pain campaign, and the following year I worked with Toyota Mobility on the Toyota Mobility Foundation’s Going Further campaign.
Take the next step
Last year I realized I had reached 100 illustrated diary entries and decided to take the next step with this project. I applied for funding through the Arts Council’s Arts and Disability Connect program, administered by Arts & Disability Ireland. I was thrilled that this application was successful and was able to develop a three-part project for September this year – which, by the way, is also Pain Awareness Month.
The first item is a printed book with over 100 illustrations from My Chronic Pain Diary. The second part of the project is an exhibition of digital prints from this book at Cork Printmakers. Aideen Quirke, the director of Cork Printmakers, was such a remarkable influence on this project. At times when I was losing confidence in myself and my big ideas, Aideen was there to move them forward, to help me develop them and to see the value of my efforts.
No news is bad news
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The third part of my project is an art trail with illustrations from the book in 2 and 3D in shop windows across the city of Cork. These windows will be decorated and filled with illustrations from My Chronic Pain Diary, embroidered artwork, and origami figures with brightly colored fabrics and lighting, along with video pieces showing short animations of some of the illustrations.
Accessibility is very important to me so that a person can travel from window to window by using shop windows on foot, by bike, wheelchair or in the car. With accessibility in mind, each window has a QR code which when scanned leads to a Soundcloud file on www.mychronicpaindiary.com where you can hear an audio description of the contents of each window. 15 shops are involved in the art trail, and in September we will be organizing two-day guided tours through the shop windows, one of which is the Culture Night.
Funding the Cork City Council Art Office meant I was able to hire a project coordinator, Aoife Claffey, a visual artist based in Cork City. I created the artwork, but Aoife is helping him bring it to life. We put all the artwork together at St. John’s Central College and then she installed all the artwork in the windows, did all the heavy lifting, and coordinated everything. Without them, I couldn’t install the artwork. She’s not afraid to try things, she drives me everywhere and her enthusiasm for the project is so refreshing. I’ve lived with these images for a number of years so it’s brilliant to have their new perspective.
I was also helped along the way by the Cork Chamber, Notes to Cork, and Crowley’s Opticians. Support also came from St. John’s Central College, The Paint Store in Ballincollig and Sooner Than Later in Dublin, who printed the books.
The people who matter
Chronic pain is a very polarizing experience, but it shows you the people and relationships that are really important to you.
You learn to let go of the people who step back – but the people who step forward are gifts that you have probably taken for granted by 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 the city of Cork.