This week, in our final post in the series focused on the experiences of women and gender diverse individuals with chronic illness, Mona's Editor in Chief Lauren interviews Cara-Ann Simpson, an experimental artist who has had a long history of debilitating illness and now channels her creative talent into accessible art.
You identify yourself as a 'collector' of chronic illnesses. Can you share some of your own journey with the chronic illnesses you live with?
Looking back, there were telltale signs of a chronic illness as early as high school. Things like unexplainable fatigue, odd clumsiness, and ‘funny’ episodes. For several years, I shrugged them off as annoying anomalies, or just clumsiness - sometimes laziness. Then in 2010 I had a more major ‘funny’ incident - I had travelled to the Sunshine Coast from Melbourne for a friend’s wedding. After stopping at a shop, I became disorientated and confused, wandering for hours, unable to think coherently. My friends found me babbling nonsense and unaware of who or where I was. An MRI showed that I had some brain lesions, but they didn’t explain what had happened. I went to multiple neurologists over the years, and all of them believed that there was no problem. I began having sporadic migraines. Within a few years, my migraines became classed as a chronic, constant migraine. The migraine never disappeared, it just changed in severity. I asked about MS, but my symptoms and the pattern of my brain lesions contradicted MS.
Then, in 2017, I had a week of excruciating migraines followed by strange periods of random blackouts. I was 6-months into a dream job - I thought that it was some of the pressure of running a non-profit. One morning, I drove home from work early, feeling unwell. I remember thinking that my left arm and leg didn’t feel right. Later that day, I drove myself to emergency because I thought ambulances were only for ‘true’ emergencies. For 12 hours I sat in an emergency waiting room at an outer Melbourne public hospital, as my condition deteriorated. Because I was quiet, I didn’t receive attention. By the time I was called, my condition appeared as a stroke - the left side of my face drooped and my left arm and leg no longer functioned properly. That spurred the emergency team into action, but of course, the signs of a stroke didn’t show up on the scans. That started long periods of being admitted into hospital, discharged for a day or so, only to have to be readmitted with new and scary symptoms.
By the time I had a lumbar puncture, I was in constant excruciating pain. Light and sound gave me migraines causing vomiting, nose bleeds, tinnitus, and constant ice-pick stabbing in my brain. My lumbar puncture results showed I had an unknown type of encephalitis - a brain infection. I’d been battling it for months with stroke-like symptoms and that terrible, non-relenting pain. Even then, it felt like a constant fight to stand up for myself and for the right to medical treatment. I was so lucky to have my partner Michael by my side during all of this. He advocated for me when I couldn’t, but also backed my story.
By November 2017, I was devoid of hope for any kind of future. I began looking for legal euthanasia options, even if it meant travelling internationally.
When I spoke with my specialist about it, he finally realised that he had to take action to help me. He set up an appointment with himself and his former mentor to meet me and review my files. I remember him not being able to decide between multiple sclerosis or neurosarcoidosis, and his mentor said: 'Why can’t it be both? Does it matter? Just start treating her with something that would target either.'
I finally began immunosuppressant therapy. It was uncertain whether I had MS or neursarcoidosis, so they started me on a treatment used for organ transplant patients. It is a total immune-system suppression, and I had several false starts before we found a way to titrate the dosage to suit my body. Within weeks, I could sit up on my own again, and could function without blackout sunglasses and ear plugs constantly.
From there, I then had to go into another hospital for a few months for rehabilitation, focusing on relearning to walk, and speech therapy. I had lost my articulation, but also struggled with finding words. After another few months, I finally returned home, and this time - armed with mobility and speech - my mental health finally broke. So, back into another type of hospital. Under the recommendation of a psychiatrist, I went through an intensive course of electroshock therapy. I lost many memories - a lot of my core childhood memories and more recent ones. Feeling fragmented, I went into a group respite home and finally, in that group setting, came to a point where I felt I could move forward with a new life.
Over the rest of 2018 and into 2019, I concentrated on rebuilding my physical and mental strength. I went through pain medication changes and natural therapies (I love lion’s mane mushroom). These things helped me regain some of my cognitive function. Where I had struggled to understand simple 3-letter words, I began reading novels again. For a period, I took singing lessons to help my voice recover, and learn better breathing techniques. I also became a board member and then board secretary for my local neighbourhood and learning centre: Living & Learning. The board and executive officer were a remarkable group of people, and I am incredibly thankful to have been part of the team during 2019.
Throughout this, I rediscovered my creative practice. While I was in rehabilitation, Michael visited daily and started taking me for short walks into their gardens. I would steal flowers and arrange them in plastic cups in my room. When I went home, I had to walk for my home-based rehabilitation and started picking some of my neighbours flowers and bringing them home to photograph. I setup a miniature photography studio in our spare bedroom’s wardrobe. This gave life to the start of my series, Furari Flores. This series, exploring the wonder of plants, has expanded into a multisensory project across image, video, sound, scent and touch. It gave my life meaning when I had lost my purpose, and continues to offer hope, love, and joy.
I still struggle day-to-day with my chronic illnesses. I’m sure there are many people, who, like me, have become chronic illness collectors. Apparently, this is common once diagnosed with one chronic illness to collect more. My health is like a complex project that is constantly changing, requiring responsive project management. Over the past few years, my migraines have intensified again. However, I’m currently several months into a new migraine injection, and for the first time in around 15 years, I can say that I’ve had migraine free days.
You live in a regional location outside of the major cities, how do you think those living with chronic illnesses in rural and regional locations might be even further disadvantaged?
Being able to easily access services and specialists is one of the biggest disadvantages to living in a rural or regional location. Due to the complexity of my health, my primary specialist is based in Brisbane, and I have to do annual tests at specific Brisbane-based clinics. This can be challenging, and ends up fatiguing me, so I have to be careful how I plan around my healthcare appointments.
Another disadvantage is isolation in terms of geography, and how having chronic illness deepens that isolation. I struggle with fatigue and live about an hour from the closest large centre, Toowoomba. While I feel guilty about not getting to exhibition openings, events or other activities, it’s important that I look after my health. I only have a certain number of ‘spoons’ everyday, and when I use more than them, the payback attracts a high interest! Driving to events and appointments takes a toll, as does being social and staying focused in group conversations. It’s important to remind myself that saying 'no' is ok.
My career has blossomed since I’ve been more forgiving to myself. Likewise, I’ve stayed connected to my friends and family more closely over the phone and social media.
There is a big BUT - even with those big disadvantages, I wouldn’t change it. I love the land where I live, and being able to wake up to this landscape every day is its own kind of soul medicine. I also love the sense of community, and how many people relate to what I’m going through. Things have changed drastically in recent years. Many in my circle openly discuss and share their lived experiences of illness, including chronic illness and disability.
Often, as women or people with gender diverse identities, our pain, concerns or
symptoms are dismissed or disregarded. Have you found this in your own experience?
Yes, definitely. Before my year in hospital, many neurologists shrugged off my weird and varied symptoms, with some even telling me it was psychosomatic. Others told me it was hormonal. Then, during that long, painful year, it intensified. It took months to be taken seriously and having to face being told to take some more paracetamol.
Like many women or people with gender diverse identities, I was quiet in my pain. I internalised it and fought to stay ‘normal’. Perhaps this meant that it was not taken as seriously as it should have been. It is my experience, however, that when I am in pain or I know something is not right, the medical world can shrug my pain off. Explained as a symptom of being female, or a symptom of my past traumas. Being part of the MS community has shown me that the medical world doesn’t take women’s pain seriously enough. It often feels that medical practitioners don’t see the pain of women as equal to that of men.
Since diagnosis (of MS, etc.) however, it has been different. Being diagnosed helps healthcare practitioners to better understand my pain, concerns and symptoms. Sometimes it’s still a battle — something that can seem scary, extremely painful and important to me is minimalised by my medical team. That these things are just part of my path as someone with chronic illness. That can be a tough pill to swallow.
Please activate the sound when watching the above multi-media artwork.
Your current exhibition is a multi-sensory experience that focuses on being accessible to all. What inspired you to create such a different artistic experience for your audience?
Furari Flores grew out of my experience with severe illness and recovery. During that time and since then, I have found myself less tolerant or willing to experience things that will take a toll on my health. This experience has allowed me to think more expansively about the work I’m making: How will it affect others? Will it affect people who are neurodiverse or people living with disability or chronic illness? What could the positive impacts be? What should I consider altering to make it more suitable to a broader, truly diverse audience? My chronic illnesses means that I’m sensitive to sensory input. I need to monitor my audio,
olfactory and visual stimuli to avoid being fatigued or triggering symptoms. If sensory input affects me in this way, how might it affect others?
Prior to this, I was interested in a multisensory approach to making art. However, I rarely considered broader needs, and how it might negatively (or positively) impact specific people. Being both an artist and an arts worker means I am well-suited to translating venue and exhibition accessibility into artworks and exhibition content.
You work in a lot of innovative media (photography, installations, sound...) and have
worked with a diverse range of artists and communities. Can you tell us about these?
Rather than being committed to a specific medium, I am interested more in ideas and concepts. When I have a concept, I make a plan for making the concept and this informs the materials and techniques that I use.
One of my favourite works is Geo Sound Helmets. This is an interactive artwork comprising oversized orange geometric helmets. When a person puts their head into a helmet a sound composition starts - made from field recordings of different locations from around the world. The person’s breath controls the audio output - changing the pace, reverberations and other aspects of the sound. I worked with a fantastic technical team to develop this work: Dr Eva Cheng, Ben Landau and Dr James Laird. I presented this as a prototype in Canada, discussed it as a conference paper at ISEA2011 in Turkey, and exhibited it in New Zealand and Melbourne.
More recently, in 2021, I was awarded one of three artist residencies through Toowoomba Arts Footprint. As part of my residency, I ran a collaborative project titled Spectral Sensoria. This project invited artists and individuals to share a sensory immersion experience. I worked with Paul Carmody and Gummingurru Aboriginal Corporation (GAC) to deliver the project. Paul is an Aboriginal knowledge holder and a GAC board member. His warmth, insight and generosity is truly inspiring. With Paul, we visited the sacred site, Gummingurru. There, we were greeted by Jarowair people who welcomed us in song, dance and a smoking ceremony. We were guided through the stone formations to learn about the cultural significance and history of the site. We then visited Peacehaven Botanic Park to learn about a range of Queensland native plants from Paul.
On day two, we visited the Bunya Mountains, where Paul and I led different versions of deep listening. These methods connected us to land and ancestors, engaging with the world in a much deeper way. Participants drew on their experiences from the intensive to create art and extend their practices.
I love the diversity of projects that I’m working on, and the flexibility to create.
Please activate the sound when watching the above multi-media artwork.
I notice that your artwork has quite natural themes. Who or what inspires and influences your work?
I’m always inspired by my environment. I am interested in sensory immersion, active observation and deep listening. These things allow me to connect more deeply with the world and give attention to the plants, landscape and animals that are around me. Currently, I’m very much inspired by the natural world - by plants, flowers, insects, birds, soil, minerals, rocks, clouds, rain, and sky. The sensory output by these different things builds my world, and keeps me immersed within it. I’m also inspired by many artists and artist friends.
Nicole Jakins, a good friend and talented artist, makes divine work. It holds a quiet power that I am simultaneously in love with, and envious of! I’m also inspired by Cat Jones' work that incorporates scent as a key component in artwork, and with Janet Laurence’s constantly evolving but ever-powerful practice.
Technology also plays a part in both inspiring and influencing my work. At the
moment, I’m upskilling in 3D scanning and 3D printing - hopefully things that will be incorporated into my practice soon. I love the incorporation of waste materials such as beer, coffee, oysters, scallops and nuisance algae into 3D filament. Environmental sustainability plays an important role in my practice. I try wherever possible to incorporate methods and materials that minimise my footprint but achieve my goals.
How do you think creativity plays a role in recovery or acceptance for those living with chronic illness?
Creativity shouldn’t be underestimated for its ability to transform quality of life for anyone. Creativity can promote positive mental health and provide acceptance. Being creative can also be a positive outlet for coming to terms with the complexity of chronic illness. There are a growing number of studies that show the positive impact of a multisensory creative environment as well. Another reason to extend our creativity across multiple senses.
As an artist, my practice is central to my being. It is a part of my identity, and integral to how I see myself. Besides that, however, creativity brings me joy, and connects me with others. It is a way for me to share my story through images, video, sound, scent or tactile artworks. The wonderful thing about creativity is that it is subjective - there is no right or wrong. In this space, beauty truly is in the beholder's eye. Failures can be breakthroughs and provide inspiration to build something new. It is a release from the everyday, and allows you to share truths or fantasies.
Without creativity, I would not have recovered - I would not have had the willpower or hope to keep going. The support and love from my partner Michael were absolutely part of that. When I lost faith in myself, he found my way for me - through creativity. The small action of bringing flowers into my hospital room saw the birth of my biggest and boldest series, Furari Flores.
You can see Cara-Ann's work and find out more about her exciting projects on her website.
All First Nations content in this post has been shared with permission. A special thank you to the Jarowair people on whose land the content was filmed and whose knowedge the project featured.
Interviewer Profile
Lauren Forner is the Editor in Chief at Mona Magazine. She has been awarded various prizes for her short stories and published a collection of poetry, Parts of a Whole, in 2021. Lauren has years of experience teaching English literature and creative writing to teenagers, adults and children and reads like her life depends on it. She is perpetually completing her Masters in Creative Writing and, like all good writers, working on the elusive novel. Lauren currently lives on Wiradjuri land in the Riverina, New South Wales, and dedicates most of her waking hours to her work in public mental health.