Writing about chronic illness can be a difficult and challenging experience. For Gut Feelings – my verse novel aimed at Young Adults – I drew upon my own experiences. I wanted to highlight my own encounters with chronic illness and how that interweaved with, and impacted, other areas of my life growing up, particularly as my own illness is quite rare and hasn’t really been written about in books or covered by mainstream media.
It took me a long time to understand my condition and to truly comprehend what it meant for me. Familial adenomatous polyposis (FAP) is a genetic condition where hundreds or thousands of polyps develop in the large bowel (colon). These polyps or adenomas start to grow during teenage years. If left untreated, they can develop into cancer. FAP is an inherited condition and my mam and grandad both had the illness so luckily, they discovered I had it before the adenomas could spread.
I’ve always found it really to talk about my illness. I’ve only met one other person who knew about it and some of the challenges I faced before explaining it to them. When trying to explain what FAP is and how it’s changed my life, I struggle to do this because it’s almost impossible for me to sum it up in two lines; to reduce the physical, mental and emotional impact to a mere few words. Inspired by this, the idea to tell the story in verse entered my head. My debut novel, Fall Out, was an LGBTQ+ Young Adult novel and given that I was a child when I was diagnosed, I knew this was a book that needed to be written for young people. I hoped they would empathise with the journey I’ve been on and that would foster compassion and understanding in their everyday lives and hopefully, that empathy will be carried through into adulthood.
Before starting, I thought of all the ways that my illness was limiting, all the things I should have been doing as an eleven-year-old. In many ways, the story was a quick one to write but as I was drawing upon my own experiences, I would finish a section and add to it further down the line. I would wake up in the middle of the night or speak to my mam and it would trigger a memory. I wrote everything down on scraps of paper. I’ve found that doing something outside your routine can really chip away at the memories held in our subconscious. I struggled to be vulnerable and to tell the story I needed to tell, I had to shed the fears and the embarrassment. I had to carve deeper and capture every tear, every pain, every moment of gratitude that I felt along this journey. It became a form of therapy, a moment of catharsis. I was able to work through some of the trauma I’d endured in free verse form. The poems flowed. I didn’t feel weighed down by rules or conventions. I felt the emotion and let the words paint a picture on the pages. The chronology was the only major issue I encountered. It was something I had to keep re-visiting because of the sporadic moments where I would trigger a memory.
I wanted to incorporate some of the challenges that people with chronic illness face and weave this into the wider emotional and psychological that we as humans face. When I was 11, the doctors and nurses bombarded me with medical terms like “dysplasia” and “adenomas”. I had no clue what they were talking about and until I came out the other side of the surgeries, I really had no idea what it would mean for body and mind. I think this is a common theme for children and young people were medical professionals explain a diagnosis as if they were communicating it to an adult. To a child, this can feel catastrophic. I channelled these emotions into the novel, particularly when exploring the first section of the novel – diagnosis – which offers a snapshot of my life and the journey leading up to my first surgery.
For my own journey, my sexuality – being gay – further complicated my experience with a chronic illness. At 13, I had my large intestine removed. At 17, they removed the lining of my rectum and created an ileal-anal pouch (or a J-pouch). I was left with a stoma and had this reversed when I was 18. Being a gay man, that presented many sexual complications for me and as embarrassing and frightening as it was, I knew that if I was going to tell this story – if I was going to tell my story – and shine a spotlight and FAP, I had to dig deep and be vulnerable in every aspect this illness affects me. The second section looks at the treatment – the medication and surgeries – I underwent to allow me to live relatively carefree and safely.
The third section was perhaps the most challenging to write: the aftermath of the illness. I had the surgeries. What next? I had to listen to my body, learn lessons the hard way and remember that my mam had the same illness. I could always turn to her. I drew upon her wisdom and she was a true inspiration in writing the book. It was her story in many ways as much as it was mine. We went on much of this journey together. I got to explore so much of myself and my own relationship in this book and although it’s been difficult, although sometimes it’s been an uphill battle, I have embraced who I am. I live with my illness, but I’ve turned my experience into something that young people will hopefully be able to benefit from.
(c) C.G. Moore
About Gut Feelings:
I learned that words,
More than weapons,
Could destroy bodies,
Could break hearts
More than fists or fury.
This is the story of Chris, what happened to him at age eleven and how that would change the rest of his life. A life-affirming and powerful coming of age verse novel that shines a light on chronic illness, who we are and how we live.
Familial adenomatous polyposis
fa mIljal aedI na matas p la pousIs
An inherited disorder characterised by the rapid growth of small, pre-cancerous polyps in the large intestines.
Gut Feelings is published on January 14th 2021. Pre-order your copy online here.
The book launch for Gut Feelings will take place on 14 January 2021 from 6.30pm. Reserve your spot here.