Katy Eccles was diagnosed with Cystic Fibrosis at 9 weeks old and was given a life expectancy of 30. However with new treatment she has made a new life for herself, setting up her botanical Imprint Casts business.
I was recently asked my thoughts on growing older with Cystic Fibrosis and what the future held. And I was a bit stumped; how do I feel about the future? Something I have actively avoided thinking or planning for my whole life due to the knowledge that my life would be cut short by my disease.
This question holds particular importance given the recent shift in Cystic Fibrosis healthcare with the introduction of modulator drugs and the health stability they provide some CF patients. I am one of the fortunate CF patients whose physical health has greatly benefitted from Kaftrio but there are sadly many who cannot tolerate it due to the side effects or whose genotype is more rare and so the drug doesn’t work for them.
Up until I started taking Kaftrio I felt like I was living life in an egg timer, waiting for that sand to run out. Dealing with a long term illness is the only life I know; dealing with a long term illness whose expiry date has been shifted and is now unknown, is in some ways harder ground to navigate. I find myself in confusing territory, feeling unsure of how to forge a new path with the lease of life I have been given, whilst struggling to deal with the behavioural patterns ingrained by living life with a terminal chronic disease.
My creative art practice has been a huge solace during these post Kaftrio years, when life as I knew it has turned on its head (for the better in many ways) and my physical health has improved. I have found solace and peace in the slow, methodical process of creating my botanical casts.
Without this outlet I would have found the challenging shift of life parameters more daunting and overwhelming. I have always been a creative soul and art was my favourite subject at school however I lacked the confidence in myself as an artist at 17 years old and didn’t feel bold enough, or sure enough, of my artistic talent to go any further with it. So instead I followed my other passion, and leaned into my academic side to go forth and study Art History at Cambridge. Throughout my studies and my early career as a teacher, then art consultant and laterally buyer for a lifestyle brand, I invented various creative side hustles to keep my hands busy during hospital appointment and laborious treatment cycles. These kept me sane, relieved anxious thoughts and satisfied my creative imagination.
When my health took a turn for the worst around my 30th birthday (which was at that point my life expectancy age) I grew even more dependent on creativity to escape the difficult reality of facing my declining health. I had taught myself to embroider when I returned to Edinburgh after living in Australia in 2015 and started to take commissions for embroidery projects and artwork alongside my then full time job. I was very panicked about not being able to work and knew there would come a day when I may be bed, or wheelchair bound, so I focused on building my embroidery business so I could perhaps work from hospital and maintain some sense of purpose and income. But in reality the embroidery kept me calm and grounded in stressful, painful and immensely boring stints in hospital receiving treatment for my latest chest infection.
My health nose-dived further over the next few years and life as I knew it began to slip away from me. The impact multiple infections had on my weight, my diabetic control and flare ups of joint pain as well as complications of finding drug regimes that didn’t aggravate my liver disease meant I lived on a tightrope of uncertainty, fear and pain. I spent an increasing amount of time in hospital at this point, my lung function decreased steadily and my weight plummeted. Everything became a struggle, every day was a test of endurance.
So when I managed to secure a place on the medical trial for a new modulator drug it was a beacon of hope I clung to. No drug has ever provided a long term solution for CF treatment so I entered into the trial with trepidation and little hope. Everything to this point had been about tackling the most significant chest infection symptoms I was experiencing, essentially short term solutions to combat a long term, losing battle. Fast forward 3 years and the trial had proved the drug worked successfully and it became available to eligible CF patients all over the UK. Prior to Kaftrio, there was little room for hope; it was just a case of survival and taking each day as it came, not thinking too far into the future and living for the moment. I didn’t realise at the time that I was living in fight or flight, it was my reality and actually I coped fairly well living in this state.
It is only now my health has improved that I am dealing with the aftermath and the ripple effect of existing in the prolonged state of trauma. The quiet solitude of my studio is a safe haven to escape mental overwhelm and I can lose myself completely in the art of casting, the technical steps of its process which cannot be rushed and require concentration, focus and patience. This helps curb the arc of anxious thoughts I find myself in often and provides space and clarity, it is very much a form of therapy for me.
When my health stabilised I decided it was time to take the plunge and try running my own business - I had always wanted to work for myself but never had the courage due to relying on sick pay from my job when unwell. My embroidery business had grown steadily and I knew I wanted to give being an artist a go, to carve a more creative path for myself and listen to the entrepreneurial side of my character that I hadn’t feel well enough to embrace. My amazing mum had been casting for years after attending a workshop in London where she learnt the art of botanical bas relief. It’s quite hard to make a living as an embroidery artist so I thought I could join mum at Imprint Casts and we could run it as a business alongside my embroidery. She taught me her techniques and I then started to experiment, develop and hone my own practice through hours of experimentation, research into plasters and versions of clay. I made many mistakes along the way, faced multiple casting disasters and technical frustrations.
Mum's core passion is her beautiful garden and after running several businesses in her time she decided to hand the Imprint reins over to me fully in 2020 after a few months of working together so she could focus on doing what she loves the most. I then spent lockdown living in Fife, where my parents live and where I grew up - living apart from my now husband who was a key worker, hence I had to shield away from him. It was a difficult and stressful time but also fruitful and focused; I had all the time in the world to experiment and practice without the demands of exhibition deadlines or normal business. And from this point Imprint has grown and grown.
I truly feel at peace when making, I can go in to my studio, shut the door, leave my worries at home and lose myself in my practice. I still cannot believe the direction my life has taken in the last few years, I never could have believed I would be where I am right now but I know if it wasn’t for the years of dealing with trauma and health issues that I may have given up when it was tough or times were difficult. My CF has taught me resilience, courage and positivity.
My creative practice has taught me to embrace patience, presentness and hope. Life is not black and white, even the most unexpected and positive life changing moments come with their difficulties. I am in a new chapter of my life, one I did not expect to be in, and one I feel sometimes ill equipped mentally to deal with. But having a creative outlet has been a life saver, the satisfaction I gain from making, imagining and creating brings a sense of calm, fulfilment and peace to my life. It has given me direction and allowed me to plan, dream and build for the future as I head into the unknown.
Imprint Casts Bouquet Cast Preservation - Katy Eccles
