‘The Face of Chronic Pain’ Series
This series was unintentionally born from pain. Trapped in my body unable to move, I had intense cravings to draw. An outlet you may say from the extreme physical pain and emotions I couldn’t escape from.
Over the slow process of losing my identity through the loss of movement, ability to take care of myself, losing my job, and becoming homeless, art happened to me. At my lowest, like a life raft, an art course was advertised with award-winning Australian artist as my teacher - Mr John Forrester Clack.
I will forever be indebted to John as he taught me to draw from what I was feeling, not about perfecting technique. As my first exposure to any formal teaching in the arts, I am so very grateful that I was first taught to lead with the heart and not the head. In effect, John laid the foundation for freedom of expression and with this freedom, this gift, it finally gave my pain an outlet.
In his classes, we had live models and what I learned looking back on my work from this period is that I saw the many faces of chronic pain. My work was a product of who I was in that moment, more so than the model in front of me.
This series consists of 21 pieces that I have selected from my work with John that give a voice to the many faces of chronic pain.
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This charcoal study was done early on in my rehabilitation after my car accident when I was experiencing the sharpest electrical nerve pain in my body. In the beginning, I couldn’t even look at this piece as it brought memories of the intense pain to life but now I see it as one of my favourite pieces of work, whilst also reminding me of how far I have come. Needless to say, I have a lot to be grateful for that art came into my life just when I needed a lifeline the most.
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Exhaustion. Exhausting. Exhausted.
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Feel the (electrical nerve pain) burn.
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The phrases and sentiments like: “Not this again”; “I can’t take anymore”; “Leave me alone”; “Don’t open the curtains, it’s too bright”; “I can’t do this anymore”; “Please. I beg you. Make it stop”; “Why me?”, come to mind when I reflect on this early piece. The body looks twisted and deformed in charcoal yet also reduced to its simple shape and form.
Some of these early pieces in my rehabilitation were incredibly raw but also very honest about the complexity of chronic pain. I didn’t understand the power of art then to express something that didn’t have words but I certainly do appreciate it now.
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This piece still affects me. For me, chronic pain became my demon - something that instilled fear in my mind and body. It was something I avoided dealing with and kept busy so I wouldn’t have to deal with it. The only catch was, it would creep in the more I avoided it and it brought along its friends too - demons of the past. What is that phrase? Misery loves company.
For me, my journey with managing and accepting chronic pain changed the day I started to deconstruct my demon instead of running from it. It took a lot of personal courage and education from my medical team to understand my enemy so I could befriend it. It wasn’t easy and absolutely one of the hardest things I have ever had to do but I’m definitely better off having gone through it.
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Chronic pain is a constant balancing act. Give and take. Push and pull. Stop and go. Fast and slow. Like all the great battles, it comes down to two strong opposing forces and in the beginning, I wanted one to overcome the other but I have since learnt it’s not about that - it’s about finding balance.
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Chronic pain for me brought on this hypersensitivity in my body. I would experience heightened sensations on the skin, through the nerves and in any slight movement. Some areas of my body were super sensitive whilst others, completely numb as the body tried its best to protect me from pain. There were days I wish I could just shake it off my body - off my back; like shedding a skin you no longer need.
Just like a sneeze that comes or the quivers before a body shake when feeling cold….these natural processes have a satisfactory ending to an uncomfortable sensation but unfortunately, with chronic pain, you are stuck on a loop, on repeat, with no ending in sight.
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Blue days.
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The hard days. No explanation needed.
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The balancing act of chronic pain on a tight rope. Having chronic pain and nerve pain is incredibly hard to navigate; you can do everything right and still have major flare ups in the simplest of movements or just from taking a breath. The margin of error between ok and in hell is so minute.
Trying to walk this thin tight rope of chronic pain can even bring on more pain itself as you swing from polar extremes trying not to fall and lose your balance. It’s hard and exhausting and even after all this time and experience, I can still frustratingly experience the major swings that land me flat on my face having to start all over again.
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To help people to understand what it is like living with debilitating chronic pain, I sometimes describe it as a slow waking mummification process: it sucks every part of you, your energy, finances, your identity and what you enjoy most bone dry till you are a hollow shell of your old self. I wish I was over exaggerating.
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Where am I in time and space? Going through chronic pain, I lost connections with my body as my body tried to protect me by being in a state of numbness. I started noticing that I was bumping into walls, tripping up stairs, having lots of little accidents and falls; I literally lost the connection of where my body was in time in space to move through the world safely. For a long time, I even lost a connection to feeling my own heart beat as the muscles in my chest turned to a hardness like bones. This automatic reptilian brain survival response to danger in my body has been a service and disservice to me.
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The cost of meeting a deadline. It’s exhausting to manage the busyness of life whilst juggling electrical nerve pain. When pushing through all the signs to slow down and stop to reach a deadline, the pain just gets worst and worst that it manifests into other intrusive physical symptoms.
You know that lyric, “When the going gets tough, the tough get going’…well I grew up with that philosophy. I would push and push through barriers of pain until I was physically stopped and unable to move. This picture captures those messages in the body getting louder and sharper and a reminder to myself that no deadline is worth not listening to your body and its limits. For every action, there is a consequence…especially with chronic pain.
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This drawing for me captures the strength of choosing to get up day after day but the struggle of doing it too.
Of course I am biased saying this but people with chronic pain are some of the strongest people I know. You have to dig down deep to find the strength to keep going and get up every day. I find the greatest battle I have is to fight to have a life, not just to exist. I only found out or understood the fleeting nature of life when the threat of its valued existence was challenged. Is it exhausting? Absolutely! Is it worth the fight? Absolutely!
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With chronic pain, there is an awful lot of sitting or lying down waiting for the nervous system to settle and realign. You can’t push through it and you can’t completely stop living either….you just have to find that sweet spot of sitting and waiting whenever the twinge becomes louder before you get wiped out flat on your back unable to move. As a type A personality that likes to always be on the move, I still push the boundaries and struggle after all this time as I find it challenging to be forced to sit still and do nothing.
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The invisible disability. People can see me but without being able to see and understand my chronic pain, they will never be able to really see me.
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The weight of it all. Chronic pain requires budgeting your “activity minutes” to use the jargon of my medical team. Every action takes energy and physical work and with chronic pain, you have to get good at budgeting your body’s time and negotiating between activities that are essential, like breathing and those that can wait, a.k.a, everything else.
For example, if you have a restless night and compromise recovery, you lose activity minutes the following day. If you are stressed and have a lot on your mind, you lose activities minutes because it robs your energy. If you burn the candle at both ends, it’s not long till you have “spent” your minutes and you need to invest in rest and recovery and can’t do anything else.
As I run out of “activity minutes” to spend, I start to feel the heaviness, fatigue and pain increase in my body. I know the projects I have been working on have been close to my heart and worth the push, bringing joy and purpose but I can’t deny the honest truth too that my body is feeling really heavy and blue.
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Pinned against the wall: you want to do more but your body says no more.
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I often refer to this sensation as the “angry bees”. With chronic pain, the nervous system is poked in a way like you can imagine poking a hive of angry bees and dealing with the consequence of them swarming around you. Once my body felt a threat of intense pain, the panic button, most often referred to as a fight or flight response was triggered. Under this perceived or immediate threat of things about to get a lot worst, the rush of adrenaline is released and I can feel the busyness in the body ramp up. I can feel the rush of communication along the lines of the nervous system and the noise in the brain and body…like the sound of an angry beehive. It then quickly manifests into all the classic physical signs and symptoms of a fight/flight response.
Having an occasional fight or flight response is all part of being human but being permanently stuck there or triggering it frequently is not and over time, it re-wires your brain and physiology. I found this out the hard way and it took a lot of pain management training with my medical team and patience to find ways to calm down those angry bees.
Unfortunately, after all this time and training, if I don’t get the balance right and poke those angry bees, they don’t hold back and are quick to swarm around my body taking me days, if not weeks or months to fully calm down. It often feels like one step forward and a hundred steps back with chronic pain as you are not only dealing with pain, but all the survival responses on overdrive in the body and mind that have been triggered too.
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Deep in thought. Chronic pain brings a lot of uncertainty and can turn your life upside down. The path ahead is not so clear anymore. This drawing for me captures the strength and resilience of moving forward but also the doubt of what the road ahead looks Iike when managing chronic pain. I, myself, have been caught in this pose many times in the wee hours of the morning deep in thought, worry and doubt thanks to chronic pain; just another way it keeps you awake at night.
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One of the hardest lessons I have had to go through with chronic pain is that you can’t do it alone. It is still a hard thing to say and admit as a feisty independent as I still believe I can do it but the science of pain continues to teach me otherwise. Healing doesn’t happen in isolation.
I don’t need to share any research or beliefs here but let’s just say, humans are social creatures and isolation only turns on the fundamental alarm bells making things a lot worst. You may have experienced this yourself during COVID lockdowns. It’s also why giving yourself a massage is not as enjoyable or beneficial to healing as compared to receiving one. We need human connection. We were designed that way whether we like it or not.
The important thing when connecting is to find the right people; people who can really listen rather than tell you not to think about it or tell you not to worry. In the beginning, the only people who could do this for me were my amazing medical team as they understood what has happening to me and could hold the space for difficult symptoms, sensations, experiences, emotions and choices. It’s not the fault of loved ones that they couldn’t do this - it’s just that they didn’t know how to help and my suffering was hurting them too.
This piece is to acknowledge that I wouldn’t be here and able to do what I can do had it not been for all of the amazing people in my life who helped me and continue to help me along the way. Thank you.