Anatomy of a Choice

Women with BRCA1 mutations carry up to 44% risk of developing ovarian cancer, and up to 87% risk of developing breast cancer. Here, Jill Mueller - an artist who was diagnosed with a BRCA1 mutation in 2012 - shares with The Eve Appeal how she has used art and creativity to explore her medical experience.

I had two immediate responses to the news that, like my younger sister, I carry a BRCA mutation. The first was that I would choose to have preventative surgeries to remove my healthy breasts, ovaries and fallopian tubes – despite the fear, or perhaps because of it. The second was that I wanted, needed to document my experience, to engage it creatively and share it with others. As an artist, I make sense of my experience through creativity.

Early on, I asked photographer Maja Daniels to document my BRCA journey with me. What began with writing, conversations, research and Maja’s photographs of my hospital appointments evolved into more creative explorations in an art studio. As a patient, I wanted to understand the science behind the process I was entering into, and what would happen to my body. As artists, Maja and I wanted to visualise the emotional and mental transformation that takes place alongside the physical one. The bulk of a patient’s experience exists between the ‘before and after’ moments we often see and beyond the clinic, out of sight and often inside the mind and emotional body. Maja and I hoped to draw out the deeper experience of a patient living in the world to allow it to sit alongside the clinical medicalisation of the body.

Maja asked me to respond to some of her images, and I found my way to stitching into them with thread. The piercing of the paper was quite raw and visceral, painful even – reflective of the surgical interventions made to my body. But through this physical creative engagement, I began to reclaim ownership over some of the more challenging moments within my medical journey, moments in which we hand over control to medical staff when we are in their care and environment. This creative engagement allowed room for me to develop a critical voice about my process as a patient, and a safe space as an artist to express that voice. Over time, as my relationship to the events I had experienced evolved, I began to reshape my own medical narrative.

On my MA Art and Science course, I developed new approaches and techniques to engage scientific and medical knowledge through art, moving from 2D to more 3D installation work. But my experience with BRCA filtered into many of my projects. A trip to CERN to engage particle physics led me to create work about PET scans and family medical genealogy; and a residency about astronomy in Italy spoke to the overlaps between looking in to the body and out into space, leading to work that integrated an image mapping the stars with a micro slide of the lining of my womb.

My final project considered more deeply how to bring a viewer into such an intimate medical experience. Anatomy of a Choice is a large hexagonal installation that invites you to peer into a patient’s inner world through peepholes and lenses. The work has roots in genetics and the clinical experience – and is accompanied by large screen-prints of a both healthy and mutated BRCA1 gene – but at its core it is my personal journey as both BRCA patient and artist, and is intended as a personal experience for you to make your own meaning from.

I want to encourage empathy among viewers, not distress them, and I put great thought into what imagery to share and how to present it. What I’ve discovered through this project is that creative interventions with medical documentation, images, objects and experience provide a veil viewers can gaze through to engage these challenging topics without forcing them to encounter personal or medical worlds in ways they aren’t prepared to.

The creative collaboration and work on the course prompted me to step outside the immediacy of my situation and consider it within a wider context, to ask bigger questions about the broader implications of this modern medical choice. This is the power of artwork engaging science and medicine: it provides a platform for new voices and different perspectives to emerge; it encourages empathy for one another’s experiences; and finally, it is a catalyst encouraging conversations around the complex nature of the choices we are faced with today.

Please click here to see more of Jill’s extraordinary work.