(Feature artwork above: 100 days…. by Nic Plowman)
HOW IT ALL STARTED
In Autumn 2015, Pain Management nurse, Bertilla Campbell sat in a Lower Murray Medicare Local (LMML) staff meeting discussing the possibility of a project with clients suffering from Complex Pain. The aims of the project were to address the isolating nature of complex pain by encouraging sufferers to engage in community projects, provide a means to express their life journey and to educate the public about this growing, silent epidemic. Ideas bandied about ranged from booking a pain expert to deliver an address to sufferers and their families through to the writing and production of a play about living with complex pain. Bertilla interrupted the meeting announcing that she wanted an arts project and knew who could develop and deliver it for them.
She rang me and immediately I was excited by the possibility of not only getting to work with her (because she is one of a kind) but also the idea of developing a project that involved expressing the often inexpressible through art and words and added bonus of the kind of project where I was not only the event manager but also a writer!
I had worked on similar projects before including a stint at the Royal Children’s Hospital in Brisbane composing original songs with terminally and chronically ill children and conversely had also worked with older terminally ill patients developing a life soundtrack by identifying and collecting music and songs that had accompanied their big moments through childhood, puberty, romance, relationships, parenting, signifying their dreams, ambitions, achievements etc up to now when they faced their own mortality. Coupled with my skills as a former festival director and event manager, this project was right up my alley and I immediately began to formulate ideas addressing all the aims and decided on the idea of art workshops and an exhibition. I immediately thought of Nic Plowman, an exciting young painter (I had met through my son and his partner) whose work was often informed by his pain resulting from a congenital heart disease and the ensuing surgeries, compounded by injuries sustained by a traumatic fall from a balcony a few years ago.
I put together a proposal for LMML with Nic conducting art workshops and me writing artist statement/life story to accompany their artworks in an exhibition scheduled for July 16 2015 at Gallery 25 on the opening night of the Mildura Writers’ Festival.
Working with the LMML team, Bertilla identified and engaged the participants while I managed the logistics of the workshop and exhibition requirements including Nic’s engagement in the project, booking venues, buying supplies and media coverage etc.
From the moment the participants arrived at the first workshop I knew this was going to be good. Bertilla and her team made everyone feel welcome, Country Care and Vision Australia delivered furniture and aids, we had some fabulous cakes made by a local ‘cook cum coppa’ to accompany many cups of tea and then Nic told his story and inspired their confidence in themselves as artists able to express a world of pain.
I was moved by the stories, the courage and the camaraderie in the room but I have to admit that I was staggered by the quality of the work produced. I knew it would be a good and important project but expected the work to be basic, simple…well, maybe not very good. I was so wrong and am impressed not only by Nic’s talent to convey simple strategies to get their thoughts onto paper and into paint, but more by the joy in the room and the courage that found its way onto each canvas.
To develop the text accompanying their artwork, I sat and spoke to each artist, asked them to complete some basic information about their lives, talked on the phone often and visited many in their homes which was such a pleasure.
A recurrent theme during the development of each story was that each one had not felt so listened to in a long long time. That people had grown impatient and disinterested in their stories of complex pain. The simple act of listening was deeply appreciated and importantly provided a space for them to tell their story that I can now share here with a salute to the 12 wonderful artists. Read through to the end where you will find feedback and exhibition launch images.
“You get into medicine for altruistic reasons, to help people, but when you get into hospitals you’re so busy you lose sight of the patient in the bed and find it difficult to engage on a human level. I didn’t even know I’d lost that until I saw this exhibition. I know the full medical details of two people whose art is here on the walls and it gives me insight not only into their health but how it impacts on their lives. This exhibition is an important experience for me as a doctor”. Daniel Bennett | 3rd year medical student, Monash University.
‘I was visiting a friend in Mildura over the weekend and spent some time in the gallery/cafe where these works are exhibited. I found the images and essays moving, and thought they were very valuable for medical and nursing students, as they provide some very meaningful insights into a person’s experience of the healthcare system and the importance of humanity in our work’. Dr Chris Hopkins | Senior Lecturer, Teaching Specialist, Department of Pathology, Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne
I’d just like to say thank you to everyone who contributed to the exhibition. You are all amazing people, I hope the process has been very healing for you all. You have all shown incredible strength. Good luck to you all – I loved the exhibition, it has helped me with my pain. It’s a great thing to express your pain like this. Angela, Melbourne (from a note left with staff at the Gallery)
BREAKING FREE FROM THE TURBULENCE OF DESPAIR WITH TRIUMPHANT DEFIANCE
I have chronic back pain with several degenerated discs to the point that some vertebrae are grinding against each other. The pain jumps out at you like its red hot and it’s followed by black, gloomy despair. It is crippling, has changed my life dramatically and I can no longer do physical work or be employed in my former work.
Recently I have decided to further my education and seek less physically demanding, more intellectual work and I am really pleased to be starting university at the end of July to study social work.
I wanted my artwork to reflect this change, my optimism in the face of debilitating pain and I was really excited by how my artwork piece came together.I enjoyed the workshops, being with good, positive people and learnt so much from Nic about technique and how to translate feelings to paper and canvas.
I am a quiet thoughtful person and was quietly chuffed when some of the other workshop participants referred to me as the Che Guevara of the group. The fist represents defiance bursting through the murky, turbulent waters of despair, to triumphantly embrace a brighter and better future.
LINUS AND I
Over a seven-month period both hips and the left shoulder were replaced. Three anesthesia’s delivering a severe, short-term memory loss. Prior to these operations I was totally optimistic that once ‘done’ I would recover and get on with my life. Now I’m in a situation of un-moderated pain, compounded dramatically when I sit, a condition basically unchanged after 3 years. I’m physically limited although mobile and am a ‘monk’. I’ve undertaken pIlates, yoga, swimming and walking as key activities to rehabilitate myself. Now I only walk as the others ‘fire up’ my problem.
My shoulder is a challenge; I cannot sleep on my left side. Slowly muscles are wasting away. My pain is coming specifically from the sciatic nerves through the hip area agitated by muscles that are in spasm. After a short time it is like I’m sitting on a severe toothache in focused hot spots. It feels like my buttocks region is on fire. (Yes, yes I’ve heard all the jokes about my hot ass!).
I’ve tried a scaffold of treatments including cortisone injections, acupuncture, pilates, yoga, an ‘AFL” genius of a masseur, remedial massage, physiotherapists and neurolistic chiropractics, a chiropractor, a specialist in neurology, pain specialists, Ayurvedic medicine, a change of diet, the next best “thing” and I’ve given up alcohol (nearly) but nothing changes.
I use a variety of cushions to reduce my sit down pain and realise, like the character ‘Linus’ in Peanuts, that I take comfort in my cushion always being there. I currently use a roho cushion designed for cushioning astronauts when blasted into space. It adapts to the shape of the seat I’m on and allows me to ‘float’ above hard surfaces. When driving or watching TV I have an esky of ice packs so I can numb my bum and not feel the pain so much. Hot arse indeed. Thus I do what I can to ensure my life is as positive as it can be. I will despite it all visit family and friends, socialize, attend festivals and events and venture into places of beauty.
Where to from here? This is a mystery. Without pain surely – but I doubt that will happen. I have my doubts about all current treatments. The last pain specialist’s ‘advised action’ put me into emergency care at the Base Hospital. There is an embedded cynicism about pain it is you who feel it so I am looking forward to the time when brain scans can illustrate with clarity the intensity of the pain being experienced. All pain is registering in your brain but experienced elsewhere. The brain that changes itself is a brain with chronic pain. I moderate my pain with four drugs used concurrently. As I have always done, I keep engaged in my social, political and cultural life because that is me. Staying still, resting and sitting does not mean comfort. I am continually, everlastingly curious and find good people to engage with. Sometimes I get angry, but never have a sense of ‘why me’. My boys and friends set ourselves a goal to climb the Ethiopian Mountains in 2013 we missed that date. Life has always been a journey; I’ve never been disengaged.
My philosophy is that climbing the mountain (both as a metaphor and in reality) to see the view brings great pleasure and satisfaction – I will keep searching for a way to get out of pain – I just haven’t found it yet. Life though, is short but wide and I really do appreciate the people I engage with, and the things I do.
PAIN AND MY DOG MY DEAR COMPANION
I was driving home with my dog when I lost control of my car and had rolled it in a single vehicle accident. I spent 14 days in a spinal unit with a fractured C6 and C7 vertebrae, had a bone graft from my hip and wear a butterfly plate with four screws in my neck. When the car came to a standstill I was in excruciating pain and have lived with total discomfort on many levels, especially my neck and hip, ever since.
I had very high expectations for my life and was a highly energetic and enthusiastic person. I wanted to be a pilot from a young age and studied psychology but now my work capability and life in general is limited because of the injury and restricted movement. It’s hard to find work that I am physically and emotionally capable of doing and this has led to debilitating depression. I often feel guilty, people keep saying, ‘get over it, it’s been 9 years’ it can be frustrating and I feel isolated, alone.
I felt wonderful after painting the picture. I didn’t think I could do it, the scary part was putting on the colour. I’ve never done a painting before.
My dog was my best friend and after the accident he disappeared for a whole week while I was in hospital. But he eventually came home. He died 3 years and 3 months later.
The flowers were sent from my ex employer, who I was very close to she loved me and was like a second mum. After the accident I was depressed and in so much pain that I never caught up with her and she passed away before I could see her. At last I have acknowledged and honoured her with the flowers, they are very symbolic for me. I didn’t intend for my face to come out like that, it shows stress, I look very sad and that makes me sad because I’m trying to be happy.
Attending the Pain Management Clinic and doing this art project have been valuable and an inspirational to me. To hear other people’s stories, understanding what they have endured has made me feel not so alone and it is a memory I shall hold onto forever.
MOUNTAINS OF MY LIFE
I’m all shook up but that’s alright mama.
My life was hard, some tough things happened to me. I was hurt as a child, my national service resulted in post traumatic stress, I’ve had a number of car and bike accidents and many years of basketball and football – even winning equal first for goal kicking in the Millewa league in 1976. I lived in the fast lane but I guess I like things gentle and soft now.
I dived into the river and broke my neck in 1979. I was clinically dead and revived after 8 1/2 minutes. It took 3 months for me to even move a finger and live now with the ongoing impact of spinal cord injuries. I’m in constant pain and my days are unpredictable, some are good and some are bad.
It can be very lonely but I love music as it really helps me relax, especially classical music, Elvis Presley and Bryan Ferry who distract me from the pain. On good days, when my body is up to it, you wouldn’t believe I’m the same person when I get into my Elvis Presley rumpus room and rock and roll dance with my wife.
With the enormous support of so many people including my psychologist Wendy, and my wonderful wife Julie, I remain determined and proud I have come this far as I fight to get up the mountains of my life.
YOU NEED TOOLS TO REBUILD YOUR LIFE.
During the first workshop I saw Peter running across the carpark; smiling broadly and bounding back into the building after a break. I had a feeling he had been running and smiling all his life.
He reported a recent breakthrough in the treatment of his complex pain where his psychiatrist has diagnosed him as having an empathy problem. That he takes on the emotions of others rather than determining/trusting his own feelings so he can feel elation with a happy person and despair with a sad person. Even being with Sam the happy yoga teacher brings him to tears of joy. Maybe it’s because he doesn’t trust his own emotions from a time when he was abused as a child?
The last four years have been ‘bloody terrible’ where he has had to push himself to do everything. Diagnosed eventually with extreme tinnitus and hyperacusis – imagine every sound inside and outside your head being amplified ten times and you have an idea of the impossible situation that contributed to Peter’s social isolation, fear of normal sounds and depression.
A few months after this diagnosis he was brought down by inflammatory arthritis. At times life seemed pointless and although he contemplated ending it all, he never gave up always with one eye on the light at the end of the tunnel.
Peter seeks out quiet, relaxed and gentle people and situations and enjoyed the good company during the art project. He is a builder who understands tools and has used this theme to emphasise how critical they are for building his new life in which he plans to include a new found love for drawing and painting.
“I thought I was just doing an art workshop and look what I’ve got out of it”
I jumped out of a plane on my 80th birthday. It was fantastic. ‘Did you feel nervous’ I asked. “Oh I had a few flutters, but no I felt great!’ This is the pragmatic, just do it, Beth. Watching her paint this picture of her childhood home I was struck by how absorbed she was in the task and wondered if this was rare – for her to have the opportunity to lose herself, to be distracted from what life has dished out to her. Immersed in mixing colours, applying the paint and rebuilding a place that reminded her of happier times, I supposed she was wandering down memory lane. No such thing. “There’s too much brown and I can’t get the colours right’ she replied when I asked what she was thinking. She was immersed in a different, even better way than I supposed and declared that she didn’t paint the picture for any sentimental reason, although ‘It was a place where we felt where we felt safe and peaceful’. ‘I painted this house because it was easier than trying to paint pain’. Her approach to painting and jumping out of planes, as in her life, is doing the best she can, living in the moment. It is the same open hearted and under stated approach she takes to caring for and sharing life with her daughter, who suffers constantly from complex pain brought on by domestic violence related injuries. ‘When she is in pain, I suffer with her in some way’.
OH THE PAIN
“I always used to stand between him and the kids. But one day he pushed me against a fence and a bolt sticking out pierced my neck going up into my skull’
Judith sufferers from constant extreme pain from the top of her head to the bottom of her feet on the left hand side as a result the domestic violence but despite the pain and anxiety, there is a spark that burns for love and life.
When asked if she would speak to the ABC presenter doing a story on the art project, she looked down, coy, gently rocking. I gave her a nudge shoulder to shoulder “Come on Judith’ I cajoled, ‘You can do it’ She playfully nudged me back struggling out of the withdrawn life she lives, because of the immense pain, and rose to the occasion.
‘The art project has given me a new option on pain management’ she told the presenter ‘I have found another release and got to know myself a bit better. My picture depicts trying to have the pain dragged out of my head and thrown away, but it’s there forever. All I can do is live in hope.
LOOKING TO SPRING
Despite the cold, windy, bleak, dark days, I am like a tiny bud on a bare winter tree working towards spring. Bending but not breaking. Even though I am now a dependent consumer, I remain positive and am growing on the inside to find a way to bloom again.
I have endured almost 21 years of cancer with surgeries and extreme damage from radiotherapy and I have watched my world shrink. I was a busy active contributor but broken and damaged, found myself isolated having lost the links that connected me to work, family, friends to life.
Once I found Bertilla and the Pain Management Clinic the world looked a little bigger and a little easier.
This workshop has got me out of my house to be with such lovely people and confirmed my long held belief that I have no artistic talent, but more importantly, that even in the darkest place you can find hope if you look for new ways to express yourself.
Art and narrative have helped me focus away from the sadness resulting from a devastating road accident. The driver was almost 6 times over the legal blood alcohol level and weaving all over the road coming towards my friend and I as we cycled one summer evening on the outskirts of Mildura. I crossed the road to get away from him, but he recorrected his path and as he hit me, my leg was crushed and I got entangled in the car as he careered up the hill with my head dragging on the ground – I was partially scalped, sustained internal injuries and multiple fractures thoughout my body.
I was a physical person prior to the accident, my identity was my body and I struggle with the loss of confidence in my physicality. I used to wake up feeling thankful for the day, a spring in my step ready to run, do yoga and meditate. Now I often wake full of dread and exhausted, feeling stiff, splintered, rickety and inflexible. I wonder if I will ever stop feeling like I’ve been hit by a car.
In many ways I feel that the whole experience has taken me out of the picture, dehumanised me, like a number in the system the health system that focuses on each injury separately, the judicial system, the police, the insurance company, the lawyers, case workers, victim of crimes, the courts – all invite me into a space of being broken and its frightening how easily I could swim in that world of being a victim.
When I’m stuck, fixated, latching onto those feelings of trauma and identifying as broken, I neither accept or reject them, rather I have come to understand that identity is fluid, dynamic and I am allowing all to be. I had self-image body issues which have been somewhat resolved by actual disfigurement so I’ve given away the game of trying to be perfect and am embracing my imperfections with a powerful need to nurture and heal my body.
My work is a self-portrait of the night of the accident, a bedpan reflecting my pain and vulnerability but also gifts to the observer, perhaps me, my true soul – my determined, fighting spirit. The face in the painting is of someone I didn’t know very well, who emerged after the accident – a part of me who didn’t let myself go. I didn’t abandon myself, I was totally there, challenged and drawing on resources of protection and strength I didn’t really know I had.
Expressing myself though a creative narrative I can step back and look at the experience as an observer, see it as a human story and re-frame what has happened as my body and mind get stronger. I have created marker moments run a little further each day, danced again in my lounge room, shifted in my yoga practice, gone back to work part time and given myself space to feel alive again and some days I surprise myself that I haven’t thought about my accident for two hours!
I wasn’t built like a whippet and the wear and tear from years of basketball, cricket and football brought on back pain that resulted in surgery six years ago. Now I have enough nuts and bolts in me to build Sydney Harbour Bridge again.
I don’t want to sound woofy, but I haven’t been the same since, the arthritis has progressed and I just spend a lot of time at home. I used to be so active and enjoyed a lot of things in life like coaching football and being involved in the young blokes’ lives, all their ups and downs, but I had to stop that.
I hadn’t drawn or painted until about 6 years ago when a long time family friend who had cancer was doing an art therapy course and trying to draw trees. She wasn’t doing such a good job, so being a former engineering draughtsman and knowing a few things about perspective and shape, I took her to the river to look at the trees before trying to draw them. This picture reminds me of those times when she got better at drawing trees, and before she died.
I didn’t paint much after that. You’ve got to feel like you want to do it but the pain and medication take away the enthusiasm for art and painting.
The art project workshops were very relaxing and rewarding and I just might get back out into the shed where I have my easel and art supplies and start adding a few more drawings and paintings to the wall. Who knows?
PRESSURE BECOMES PAIN
Despite my pain and isolation, I took to these workshops like a duck to water. I had such a good time and loved being with people in the same situation. I realised that I am not so alone.
My pain feels like hands pushing my lower back, pushing me forward and causing me pain. I have to go slow, like a turtle, so as not to exacerbate the pain. I was a designer, a seamstress earlier in my life and have used a dress making block to achieve the shape of my body and my own hand prints pushing against the back.
I had so much fun creating this artwork and was on such a high after the workshop that I couldn’t shut up when I got home. I didn’t think I would come up with something to paint and I did!
CAN YOU HEAR ME? CAN YOU SEE ME?
Maybe I need to speak up, look up and face you so I can tell you how a drunk driver took away so much from me when he hit our car head on 2 years and 5 months ago on New Year’s Eve. My sight. My ability to drive and be independent. My health and mobility. My confidence and peace of mind. I had to say goodbye to my job. Just at a time when I was moving on from a traumatic childhood and feeling strong and so happy after the birth of my first child who, due to my precarious health, may be my only child. The drunk driver who hit me spent time in goal now he walks the streets of my town. He has never apologised or spoken to me or my family about the accident. He got 6 months and I got life.
Before the accident I was a very loving and optimistic person. I worked hard in the same job for 12 years as well as helping my husband’s family on their block. Now I am fearful, I do not sleep well, I feel depressed and anxious and my life revolves around specialist appointments, surgeries and health support services.
I am very good at keeping everything to myself just to please others, but this workshop and painting this picture, which I am so proud of, has helped me to express myself, to face myself. I am a fighter and maybe I can find it in my heart and my head to accept everything this accident has done to me and focus on the love of my family and looking after myself – so I can find peace.
Over 100 people attended the exhibition opening including family and friends of the artists and some of the Mildura Writer’s Festival guests including Tom Keneally who was very moved by the works as was Bruce Esplin, Chair of Regional Arts Victoria, who was in town to open an exhibition by Robert Hague the night before at The Art Vault
Since the exhibition opened we have received wonderful feedback, but nothing measured up to the appreciation of the complex pain sufferers including this public letter to the editor in the Sunraysia Daily on 1 August 2015.
Exhibition shines light on dark world of pain
I would like the opportunity to publicly thank all those involved with the Medicare Local Service that existed until recently and all who took part in the current Complex Pain Art Project Exhibition at Gallery 25. As a participant in both I cannot fully express my gratitude to all those who encouraged and supported us.
Most notably Bertilla Campbell whose professionalism and generosity of spirit went way beyond her duty of care, the entire LMML team; the young artist Nic Plowman whose help and encouragement made it possible for my small depiction of my life with pain to not only express the emotions but turned a simple painting into a work in which I could feel some sense of achievement.
Helen Healy, whose lavish praise and support added much needed sunshine to my small, dark world.
The people who came out on a cold evening on July 16 to the opening night and who were so generous with their comments and support also goes a heartfelt thanks. I also thank all from the arts centre and the staff and management at Gallery 25 for allowing us the use of their rooms and facilities.
Thanks to the 11 other participants for the bravery they showed in coming together to shine a light on the many people who, like us, have found their world forever changed because of the little understood chronic pain.
I would like any of you to contact me if you might like to talk about forming a social group of similarly affected people, perhaps we could help each other to expand our ever shrinking world.
I’m hoping to see you all. Lyndal Moore, Mildura
The Exhibition runs until the end of September 2015. For inquiries regarding developing a project for you please contact Helen