May 9th, 2016
Laura La Rosa in conversation with Flutter Lyon (Robyn Wilson)
Sliding homepage image by Amy Piddington
Robyn and I know each other from high school, and by “know each” other, I mean she was this ultra gutsy kid in my drama class I admired quietly from afar. She spoke her mind, fell in to character and projected her voice like no one else, sung Van Morrison’s Moondance in front of the whole school, and inadvertently introduced me to ambition by inferring at the age of 16 that we could in fact “go places”.
Back then, she seemed so confident, determined, and rightfully wild, all the while sitting left of the ‘mean girls’ category in that she was always kind. We grew up quite separately in the Hawkesbury region before the post-2000 motorways boom and the city felt far and estranged.
Like myself, Robyn and a handful of others would eventually leave our small town and start a life in the city’s outskirts in search of wider culture and influence. It would be some years later via social media that a friendship and some beautiful parallels would begin to unfold.
Now in my early 30’s, I still watch Robyn from the sideline, in awe of the way she transformed from that gutsy kid in drama class to one of the most savvy, selfless, driven and compassionate people I know.
Robyn, who also goes by the alias and the name of her organisation Flutter Lyon, is an Australian contemporary artist and founder of Reflected Legacy Palliative Care Project. Based in Liverpool Hospital and supported by The GroundSwell Project, Reflected Legacy is the facilitation of storytelling and art making sessions for patients as they live their end of life experience. The project has been awarded major funding by Creative Partnerships Australia and Dry July to continue to implement its unique creative and social strategy.
We caught up recently to talk more about Reflected Legacy and the intersection of life, death, art and storytelling.
Laura: When I think about being seriously ill, I picture a hospital bed, a white palette, the smells, the sounds, the healthcare professionals coming and going etc. Am I right that Palliative Care is a multidisciplinary approach that houses a different picture to this?
Robyn: The team at Liverpool certainly take a very multidisciplinary, human-centred approach to their care of people in the latter stages of their life. The physical environment is mostly as you’ve described, though it is becoming more vivid as this project unfolds on the ward. But the care of a person in the palliative space, as opposed to other wards in the hospital, is slightly different.
When a person is at the stage of an illness where it is apparent that their life is going to be coming to an end at some time in the next days, weeks or months, their care is largely focused on comfort and conclusion. A patient is given care not only by the medical team, but also psychologists, diversional therapists, physiotherapists and social workers working in collaboration to help the person have their wishes met before they pass away. There is also a lot of family support involved and engaging with family members to help them move through the changes they are seeing in their loved one and the beginning of the grieving process that often begins before a person dies.
Laura: You ran a Pressing session with me. I was initially (and by nature) reluctant to open up too much. I was surprised to find myself sharing components of my life that I wouldn’t ordinarily vocalise. We delved into conversations about courage, freedom and love, and you facilitated this with so much warmth. I felt safe to open up with the absence of judgement. You must hear some incredible stories at the hospital…
Robyn: I do, yes. Humans are wonderfully interesting, individual, complex. I’ve been holding sessions for 6 years now and I’m often asked about some of the standout stories I’ve heard. It makes sense, I get to hear some of people’s most intimate stories – it’s a deep honour and privilege. But you know, defining one story as being more interesting than another, that’s kind of just to the left of what the practice is all about.
I am so glad to hear that you felt safe and free to share your stories with me. Also, hearing that you felt no judgement – that’s something I strive to achieve across my life in all encounters with other humans. I can’t say I’m perfect but I really try to understand where someone is coming from and be open to their journey as a human and invite them to share whatever is truest for them during their time with me.
Every person has an interesting soul and story. The stories of our lives are the words we place upon our time on this planet, to give it meaning in the verbal and narrative sense – but really, we’re each existing as single incredible miracles of life. Every soul/spirit/being is as rich and as complex, as gentle and powerful, as the next. That miracle unfolds in different shades, textures, settings, sensations and moments for each of us.
Life is messy, beautiful, connected, isolated, peaceful, questioning. It’s a landscape. The sessions and ink-pressing maps are about sharing, seeing and reflecting upon the multiplicity of our experiences, and coming to find acceptance of all of those things alongside each other. The darkness makes sense of the light, our questions are answered only by doing, and our strength is built only by climbing those mountains and seeing what’s on the other side.
I think we all really just want to make sense. To feel that we have a place and a grasp, even if it’s at times tiny, on why we’re here and what we’re here to do. Those things help to form the meaning of our lives.
“Life is messy, beautiful, connected, isolated, peaceful, questioning. It’s a landscape. The sessions and ink-pressing maps are about sharing, seeing and reflecting upon the multiplicity of our experiences, and coming to find acceptance of all of those things alongside each other.”
Laura: Intersecting art and storytelling with the hospital space, it’s such a powerful concept. How has Reflected Legacy been received so far from the entire Palliative Care community?
Robyn: So far, I’ve really been working on this project quite independent of the rest of the community or industry. I’ve wanted to let it grow organically, to respond in real time to the human beings and needs of the ward, without too much influence from the outside world.
I’m getting ready to connect more with the community now – via media and speaking engagements – but as it’s such a sensitive and complex area of work to represent, I wanted to find my own language around the project’s impact first. I wanted to see how patients engaged with the sessions, what families said, how staff responded.
In such an existential setting I’m finding it’s the nuances in conversations, the cracks between words that tell the most and provide the most profound insights. I want to talk about the project with balance, truth and reality, to share what’s it’s like to sit with someone who is dying, to look into their eyes, to hear their stories, to create beauty in response even when I feel challenged by the sadness and grief that runs alongside the profundity of dying.
This week I held sessions with the staff – doctors, nurses, therapists and management staff, and gained a whole new level of understanding of why they do what they do and where the work that Reflected Legacy does fits into the broader care of patient.
Laura: Death is something I think about a lot. My mother died in her early 40’s, which has left me acutely aware of my own mortality. Every day, you go into your workplace, a community of people that are confronted with ‘life and death’ in their day-to-day. The people you are connecting with, facilitating Ink-Pressings for, and going home thinking about, are facing some pretty heavy realities. It’s very unique work that you do, and at the risk of sounding clichéd, it takes a special person to do so. I’m wondering how you keep your own wellbeing on track?
Robyn: Great question. I managed last year’s 3-month pilot program without too much personal impact – it was a new experience and the concept was strong. I could engage with the work on a level that didn’t engage my own personal self too much. I was there to provide a deeply meaningful, rich experience for each patient and family but then I could healthily detach at the end of the day.
This year, I’ve been challenged to expand my practice (and personal self) to the next level. About a month ago, the grief and reality of it all started getting to me. I couldn’t walk through the ward without feeling like I just wanted to turn around and walk right back out – into the light of day where pretty people sipped coffee and flicked through design magazines – you know, the life we see on social media. But this project is about real life and real death. It’s visceral, intense, sad. It’s so real, it’s blinding. It makes you have to confront your own mortality, health, life purpose and meaning.
But I know I’m supposed to be doing this work. I know it with my whole being. So I knew I had to expand, not retract. So, I’ve opened up to my colleagues, I’ve done some deep thinking and connected with my friends, I’ve turned to my spiritual teachings and psychologist for support. The end of life is a profound and stunning thing, just like birth, but we may need to go on a journey that helps us carve out the space to receive that richness of experience.
Now I’m back at the hospital after a week off and I’m engaged and inspired again. I’ve learnt more about the process of art creation and personal nourishment and creative sustainability. If we are to make things it – of course – makes sense that we must replenish our tanks. I now know more about the things that replenish me so I can be strong and able to hold space and create art for people in the ways that I love to.
Laura: Can you tell us a little bit more about The GroundSwell Project, and how the funding for Reflected Legacy came about?
Robyn: I owe The GroundSwell Project so much! They are absolute legends. So, early in 2015 I got in touch with Kerrie Noonan, founder of TGP, because I thought that Pressing Sessions might be a useful experience for people at the end of their life (TGP bring together creativity and health to make meaningful change around death and dying in Australia).
We started working on bringing the Sessions into Liverpool Hospital, applied for a grant from Creative Partnerships Australia and were awarded $8,000 in funding if we were able to raise the same amount via crowdfunding. We ran a successful Pozible campaign – which not only raised the capital to fund the 3-month pilot program, but also helped raise awareness around the end of life and the role that art can play in healthcare.
In November we were awarded close to $30,000 by Dry July (a charity that raises funds for people living with cancer) to fund another 6 months of the program in 2016.
The next phase as we move into the second half of this year will be about raising funding for a further extension of the program. It’s all part of the process: the art, the human beings, the funding – it’s all integrated and I enjoy all of it.
Laura: You started out studying fashion design, before moving on to more contemporary art practices, curation and performance art. I’m wondering if and where the connection and passion for the health space came from for you personally?
Robyn: Although I had a deep love of the beauty and aesthetics of fashion, while I was studying I realised I was actually more interested in the people wearing the clothes than the clothes themselves. I was interested in the way people represented their internal selves via external means; through their clothes, their home, their creativity, their community.
I wondered about the idea of the way a person is ‘seen’. Moving away from judgement-based seeing, and whether the way someone looks is right or wrong, cool or uncool, understood or not understood, and looking from a more essential position. Every human being has a right to live the life they’ve been given and to explore the soul they inhabit, with as much honesty, honour and vibrancy as they desire. Yet, this rightful place of perception, of personal freedom, is often hard for us to access in a world filled with influences, definitions and association.
“Every human being has a right to live the life they’ve been given and to explore the soul they inhabit, with as much honesty, honour and vibrancy as they desire.”
The Pressing Sessions provide a moment in time, a space and tangible symbol of freedom and courage. A place to seen and heard. When we feel free, acknowledged and accepted in our simple humanness, it can help us to understand our existence as something with meaning and purpose. I believe that a sense of meaning and purpose is fundamental to human happiness.
The hospital space is often where people are not only at their most vulnerable, but it’s also where much of their identity is stripped away. Some of the things that would usually help to signify a person’s identity are simply not relevant to being in hospital – plain hospital gowns, beds, and rooms make the experience homogenised for every person.
A human becomes a patient. A life becomes a diagnosis.
Particularly in the palliative care setting, where a patient might spend an extended amount of time, things like exercise, entertainment and creativity are greatly limited. These things not only fill the human experience with colour and stimulation but they contribute greatly to the way people feel like ‘themselves’.
So here we have human beings who are physically and emotionally vulnerable who don’t have access to the usual things that nourish the ecosystem of identity, helping to balance them during challenging life experiences.
Sitting with someone who is dying is a visceral, profound experience. None of us chose to be alive; to engage in this thing called the human experience. We are simply born and then our life just ‘is’. Who we are becomes built over time, over moments and years. A full array of challenges, achievements, surprises, learnings and changes spread out across the lifetime of our lives. That lifetime could be short or it could be long. It could be many moments or just a few.
What we experience and who we are become intertwined to create a narrative, a life story. Reflected Legacy is about giving that person in the hospital bed a potent hour of attention where their memories, emotions and stories are shared with trust and honour. The stories then become mapped across the paper with the ink-filled syringe, each line and form becoming a signifier of each story shared, before being pressed together to create a striking, symmetrical image.
An ink-pressing is a tangible way of saying to a person – who you are is seen, and the stories you have to share are heard. Through the ink-pressing sessions, I hope to provide a greater sense of personhood to someone at the end of their human life by capturing their legacy for generations to come.