Writer Lia Mills tells us how the notebooks she kept as a cancer patient helped her retain a sense of self during her treatment and led to a positive shift in her relationship with her artform.
In Writing: finding a way through illness
Ten years ago I was diagnosed with an advanced stage squamous cell carcinoma in my cheek and gums. By the time I got the diagnosis, the cancer had spread to several lymphnodes with perineural invasion, which means that it had also progressed to the space surrounding multiple nerves in my neck. The prognosis was bleak. The proposed treatment included radical surgery to my face and neck to be followed with aggressive radiotherapy. I would get a whole lot worse before I got better. If I got better.
I was working on a novel at the time, so I brought notebooks into hospital with me, thinking that I’d work on storylines while I was there; I wasn’t about to let a thing like cancer stop me.
Before long those notebooks were overtaken by lists: of names, individuals and specialities, options and treatment plans. Being in hospital is a lot like moving to another country – there’s a whole new vocabulary to learn, new customs, geographies, constraints and possibilities. I had to record everything so that I wouldn’t forget or confuse the details. At the same time I was noticing everything around me with a peculiarly focused attention. I wrote down everything that happened. What people said and did, what I thought and felt. The notebooks would eventually grow into a book, In Your Face, but I didn’t know I was writing a book at the time. I only knew that I used them in a desperate attempt to hold onto something precious – a thing that turned out to be myself. There was a woman on the ward who used to call out a name, over and over, the name of someone who never came. In the book I suggest that the name she calls is like a rock she clings to as she drowns. The notebooks were my rock.
Before all this I’d have said that I write because I have to. It’s a physiological need for me, I’d have said – did say – like breathing. I meant that, but I meant it from somewhere near the front of the mind. In spite of it, I was often at war with myself. I needed and wanted to write but had to struggle to do it, often feeling utterly unentitled, fraudulent – a toxic disempowerment that is the cruel opposite of the authority a writer, by definition, needs. This conflict has tangled personal roots that are irrelevant here, only the fact of their existence matters. Many writers experience similar blocks. If we’re lucky we find ways to work against or around them, to hold doubt at bay while we finish a piece. Even if we think, as I did, that we understand the issues on an intellectual level, the effort can be exhausting. It undermines the actual work. This writing was different: urgent, necessary and absolutely mine; a lifeline that anchored me to the world and held a place in the world open for me – not just mind but heart and root.
There was little I could do to help myself through this illness and treatment, other than to find ways to express what was happening in my own terms, to resist medicalese and the standard consolatory euphemisms. Not that I was above euphemisms – the first one that dawned on me, the first chink of light, was when I realised that cancer is a word, not a sentence. I would learn that other people had come up with it before, but it came to me like a new-minted phrase and getting there felt like shelter. Words and sentences are what I know. I spun phrases and conjured images and sought the right words, a clear expression of every thing that happened in terms of its meaning for me.
Writing my illness in this engaged, focused way, I was not so much telling or describing it but living it in writing. The phrase ‘my mouth is eating me’ steadied me. When I put the question What will it be like to have half a face? on paper it looked back at me, perfectly calm. The image of my tumour as a crab gave me a sign to look for and I found it everywhere – in the behaviour and sensations associated with the kind of pain, the pincer like restriction of my jaw, the ugly red, the carapace. When I was allowed home for visits we’d walk around the harbours and beaches of South County Dublin. I saw signs everywhere – empty shells, broken claws – and felt enormous pity. One of us had to go.
I was absolutely present in that illness, one big ball of apprehension: nervy, taking every thing in. My mind had nowhere else to go. My tools of engagement were: attention, observation, language. In writing I could translate experience to words, images, sentences. I was relatively powerless in physical terms, but there were powers I could summon – powers of suggestion, of association, of imagination and naming.
Somewhere in that labyrinth of experience and observation, of dread and love and awe I came home to myself in writing. It was a while before I noticed: I was happy there. There was no space for the old mechanisms that used to interfere with my own work or my sense that I had a right to do it; no room for doubt, vanity, self-sabotage, self-protection or evasion.
Writing with that intensity healed a tectonic fault in my sense of myself as a writer. I realized that the faith and commitment a writer needs are a choice every writer has to make, every day. The many obstacles I had to negotiate to bring my whole self, my full attention, to my work, were absolutely mine to dismantle and discard.
I had been sleepwalking, now I was wide awake. If there is something that you burn to do, a thing that makes you feel most passionately alive and you’re not doing it – why not? What are you waiting for?
Lia Mills writes fiction, memoir, essays and an occasional blog. Her most recent novel, Fallen, was the Dublin/Belfast Two Cities One Book selection for 2016. In Your Face, a memoir of mouth cancer diagnosis and treatment, preceded it in 2007. Lia was a founder member of Mouth Head and Neck Cancer Awareness Ireland, which has run an annual Mouth Cancer Awareness Day in Ireland since 2010. She is co-editor with Denise MacCarthy of Word of Mouth: Coping with & Surviving Mouth Head and Neck Cancers (2013), available as a free download from the Dublin University Dental Hospital.
Somewhere in that labyrinth of experience and observation, of dread and love and awe I came home to myself in writing.