Rock Art

We’ve been slowly driving down a gravel road on the outside of the Gariwerd. We have come this way to see what will be the first indigenous Australian rock art I’ll have seen. As we pull into the car park for Bunjil’s Shelter I battle my habitual instinct to be comically irreverent and suppress the urge to make a joke about how this would be a good place for us to dump the leftover food scraps and rubbish from the camping trip we have just been on. It gets on my nerves when people make jokes during tragic parts of movies or take jokey selfies in front of stunning landscapes they have only just arrived at, so I feel my stupid joke would be disrespectful and make me the kind of jerk I hate. I know my sense of decorum is somewhat arbitrary but that doesn’t make me feel any less self-righteous about it.

The walk is short; after a two-minute tramp up a small hill covered in boulders and scraggly, dry Australian flora, we are surrounded by a landscape that is rural with patches of forest and sandstone mountain ranges in the distance. We quickly come across the rock art, painted in a shallow little cave within a huge boulder. The art is separated from us by a protective metal cage but nevertheless I am struck by it. I didn’t know what to expect. I didn’t want to force myself to feel anything, like when you hold a hundred million year old fossil in your hand and try to make yourself understand, truly understand how ancient it is but all you can think about is how you’re hungry, horny and insecure about why so and so hasn’t called. But in this case, I needn’t force myself to feel something because I am struck instantly.

I’m reminded of a time at art school where we were made to do a meditative drawing exercise in the beautiful Tangatarua Marae. We were each blindfolded and then handed an object which we had to draw in our sketchbook for several hours without being able to see anything we drew. The instructor handed me a soft object, a roll of toilet paper, I laughed and cursed him but as the hours passed I found myself hurtling through swirling vortexes while simultaneously drawing them into existence. When we finally took off our blindfolds, I was disappointed and amused by how tiny and unremarkable my drawings were because they had felt immense. We discussed our individual experiences and one woman spoke of how she had spent the last half-hour sobbing because she had reconnected with mark making and was so deeply touched by it.

I remember that lady as I look at an artwork that I reflect could perhaps be 3000 years old. I think about mark making, how old and deep that impulse is within us. I think about how it is a means of communication through generations, an attempt at defying mortality, a method of creating and expressing meaning. I think about my own ever-present urge to make marks and how my body and my injury no longer allows me to do it compulsively. I think about how lucky I am during those times when I can pick up a paintbrush and how, to me as an atheist, art is the closest I come to religion, art is how I express angst and awe.  I think about how some of the marks are from more recent European white overpainting, an attempt perhaps at preservation. I think about white paint, white people, colonialism. I think about how I can never know what was going through the artist’s mind when they painted this, I can never know if they were inspired, leaving a message or simply a bored kid killing time through the hottest hours of the afternoon.

After a while I leave that spot and start to explore the small hill and boulders surrounding it. I want to hang onto this feeling I’m having, this calm, so I walk slowly, running my hand along the boulders and feeling as if I truly comprehend the weight of them. I climb up onto one of the rocks and look out across the landscape. I begin to imagine the people who had been here before me, thousands of years before me and I feel sorrow while beholding a landscape that I now perceiv to be blighted by agriculture and scarred by roads. I find myself imagining someone a thousand years ago standing on this same boulder and surveying a land unblemished and I am uncomfortably aware of myself romanticising a past, a place and a people I will never know.

I run my hand across the lichen and observe that this particular organism looks as if it is covered in thousands of tiny, gaping baby bird maws. I observe the whiteness of my own hand and the tacky cat print dress I brought in Thailand. I think about my own whiteness and about how when I was a kid growing up in New Zealand, I thought I was Māori because most of the kids at my school were. We sung songs in Māori, we ate hangis, drew koru patterns and my grandfather was Fijian which, to a six year old, is the same thing. When I realised I was not Māori, I remember feeling strange and uncomfortable about the realisation that I was… Pākehā. I think about how I never quite felt at home in New Zealand, America or, now, Australia. Perhaps I will always slightly feel as if I am trespassing on the space of others, but how this is not a feeling that especially causes me angst anymore because it simply is. Humans are an invasive species.

I think about my tendencies to daydream and how I love places with a sense of history connected to nature. I also think about how one can navigate an appreciation of other cultures and foreign lands without colonising those places, without romanticising the other. At the same time, I think about how romanticisation is a way in which we connect to the past, the way we feel a lovely and painful nostalgia for that which once existed but which we never knew.

I think about the more recent graffiti that people have left on the boulders and which has been removed by do-gooders with scrubbing brushes. I think about the value we place on the past while considering the scrawlings people have left from our own time to be without value. I think about how I am glad that the graffiti has been removed, how I am glad that we treasure the disappearing remnants of the past and try, desperately, to preserve places of natural beauty… but how we also forget that this current time we are in is just as transient, someday there will only be fragments of this left and someday there will be nothing. We think we are separate from nature but all of this is the exact same stuff and the only thing that separates it is the meanings we assign.

I reach my hands out and feel a warm wind blowing against my skin. The air here is alive, perhaps only with the meanings I have embedded into this place but nonetheless, it is beautiful and sacred and I feel grateful. As we leave, I find myself touching the blackened stump of a tree consumed by a bushfire and whispering “thank you”.

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Diagnosis

Last week I got an official diagnosis of thoracic outlet syndrome (TOS) from a physiotherapist specialising in shoulder therapy. I liked her, she came across as being that rare sort of fiercely intelligent person who is dedicated to truly understanding what they do. Her questions were thoughtful and relevant, and her explanations were frank and thorough. Quickly she came to a diagnosis and explained to me that my shoulders are hyper-mobile, therefore they sit in the wrong place, not in their sockets the way they should be. This combined with my, in her words “big head, big boobs and crappy little shoulder muscles” made me predisposed to this condition.

She told me I can blame my parents for this because this is their genetic legacy. She told me that my body was not made to be an artist and handle the kind of repetitive motions and load-bearing that art and computer work require. She told me if I ever have kids that I should encourage them to join the circus and become contortionists.

On the one hand, it made me incredibly sad to hear; my art is my passion and it is a sick, dark joke on behalf of the universe to give me this body that does not suit this temperament. But I walked out of that appointment feeling lighter than I have in years and I’ve spent this week feeling overjoyed.

Don’t get me wrong, there is a long, long road ahead of me of intense physiotherapy that is going to require real discipline and I probably won’t start seeing tangible results for at least a year. There is not a cure for my condition and surgery is not a useful option for my type of TOS. My life isn’t about to become easy, in fact I have a hard slog ahead of me and while the specialist was very optimistic that I could be helped, she couldn’t make promises. I respected that about her, I’ve come to distrust any medical professional who offers miracles.

Also, while I will never give up my art because this is my passion, my identity, my great love… I may never be able to pursue it with the intensity and dedication that I want to. I may always have to drip feed myself. That hurts but it’s also an idea I’ve been coming to terms with for some time now. In fact, last year during the worst times of pain, I thought perhaps I had lost my art completely and that was devastating. So while I am somewhat acclimatised to the idea of never being able to truly throw myself into my biggest dreams, it still does break my heart.

But this has done something huge for me. Now I know exactly why none of the doctors, osteopaths, physiotherapists, hand therapists, sports physiologists, Alexander technique instructors, yoga instructors, clinical Pilates instructors, etc etc, could not help me. Every single one of them was giving me advice, exercises and stretches that would not help my condition and in fact would exacerbate it. I always suspected that there was something off about the advice I was getting and I had to abandon so many options but every time I did, it made me feel as if I was a quitter, like I wasn’t trying hard enough.

But I was trying hard, it’s just that I was trusting my body when it told me the thing I was doing was wrong for it. As it turns out, I was completely right. The specialist told me that I couldn’t have done those exercises they gave me because of the complex structural issues stemming from the way my body is built leading to my RSI and TOS. One day those exercises will be good for me but not for a long time, not until we’ve completely retrained my body and muscles how to work. Strengthening is a long way off yet and it’s weird because nowadays I lust after the gym, I fantasise about someday being able to sit down in a rowing machine and… use it.

Now that I have this diagnosis, it’s like a giant piece of the puzzle has fallen into place and it’s just explained so much. For the last (almost) five years I haven’t been able to shake the feeling that this is my fault, but I can’t blame myself for my genes, I can’t berate myself for the body I was born into. If I had spent a year working out and strengthening my back muscles before I started painting when I was 14, perhaps I could have avoided this but otherwise this was… inevitable. This was written into my DNA. Five years ago, I would not have been overjoyed to be officially told that I have a disability but now I am just so happy to finally understand what’s going on with my body.

As for the length of time it has taken to get a diagnosis, well, in part that is due to the great surfeit of misinformation and disagreement regarding RSI that seems to permeate most every corner of the medical community. It’s due to people not listening, it’s due to doctors not caring. But, ultimately, thoracic outlet syndrome is somewhat rare and not very well understood and the symptoms can so easily be mistaken as coming from all sorts of other causes. Thanks to the internet and the wonders of Google, I was lucky enough to find a specialist with what seems to be a very thorough understanding of the structural underpinnings of my condition, but it took five years of hunting, reading, pursuing many dead ends, having several diagnoses that never quite seemed to fit, spending more money than I can bear to think about, and more emotional and physical anguish than I care to currently dwell on.

But this diagnosis… the more I look into it and learn about it, the more right it feels. It helps explain so much. I have felt trapped for so long, my body has felt like a monstrous, malevolent mystery. Now it’s simply a machine with faulty parts; faulty parts I can understand and perhaps learn to work with. And mercifully, I am finally truly letting go of the burden of blaming myself. I feel lighter than I have in a very long time. A weight has lifted; this is not my fault. This is nobody’s fault. This just is.

This is not a cure but I’d long given up on that idea. This is something more precious, this is hope that is more tangible and believable than I’ve had in a very long time. Though I expect there to be many setbacks, I’m just so overwhelmed with joy at the prospect of finally moving into the future. I’m nervous that this could turn out to be another dead end but this just feels different. I think this might be different. I feel tentative. I feel happy. I feel terrified of being happy and getting disappointed.

Is that a flicker I see at the end of the tunnel? Instead of my body being absolutely wasted by the time I am 40 as I have been so afraid of, might I actually be relatively capable? Might I be able to cobble together some sort of life for myself that more closely resembles my dreams? Might I be able to ride bikes? Carry bags? Paint every day for an hour or two? High five with impunity? Or even just sleep a whole night through without my body seizing up?

Oh God. I’m so happy. I’m so scared to be happy. I’m so relieved. So relieved.

Pain

(Note: This was written a few weeks back now.)

‘But who can remember pain, once it’s over? All that remains of it is a shadow, not in the mind even, in the flesh. Pain marks you, but too deep to see. Out of sight, out of mind.’
― Margaret Atwood, The Handmaid’s Tale

I equate pain to hunger; when hunger is intense, it’s omnipresent and demanding but once one has eaten their full, it’s hard to remember what that hunger felt like. Though I suspect that those who have experienced genuine starvation might always be troubled by the memory of that experience and it is similar with chronic pain.

When it is intense, pain is omnipresent and demanding like a troop of monkeys that follow you around all day screeching, crashing cymbals and revving chainsaws. It makes it hard to think, it shortens the temper and studies are showing that chronic pain not only causes depression and anxiety issues but that there can be more permanent changes to the very way the brain functions.

Fields […] described the psychological effect of chronic pain as “the clouding of the future. There’s no escape from it. You want it to end, but it doesn’t.” As a result, people become pessimistic and irritable, he said. “People come to expect the next day is going to wind up being painful. It just takes the edge off of life’s little pleasures — and big pleasures, for that matter.”
– From this article describing the brain mechanism behind chronic pain’s depleting of motivation.

My pain has been with me for almost 5 years now and over that period of time it has gotten worse. Not only have I forgotten what it feels like to not be in pain but I often struggle to feel hope about my future. Even on the days when my pain lessens, though I am grateful for those days, they always feel like a temporary reprieve and inevitably end up being so. It is also difficult to feel optimistic and motivated when so many things cause the fire to flare back up again. I mean, it’s hard to feel motivated to face the world when everything I love most is only available to me in the most limited capacity, if at all.

But it isn’t even the burn that is the burden, it’s the negative messages it seems to convey to me. ‘This will only get worse, I will leave you completely useless and completely helpless. I will atrophy your muscles and your body will curl and slump so you are old and broken before your time.’

I breathe in, I breathe out, I focus my attention on feeling a beam of sunlight on my arm or smelling the soft spring grass between my feet. The clamour of pain fades into my periphery but it never leaves, it’s always there waiting to burn and roar at the slightest provocation.

Today’s blog entry is a pessimistic one because right now I am feeling sorry for myself. Everything is so much harder with the constant noise of physical torment as a backdrop to everything I do, though the volume does change, it never completely ceases and moment by moment, it reminds me of its presence.

Company

Her skin is lumpy, her limbs asymmetrical and her breasts disproportionately large. The stitches he has sewn are inexpert so when he presses down on her, her seams start to split and the plastic bags she has been stuffed with rustle.

Utilising a permanent marker he has carefully, lovingly sketched her eyes that look like round, black spiders and painted her a smudged, smiling mouth with fuchsia lipstick by Maybelline.

He dresses her in different outfits, babydoll dresses with tan leather sandals, black silk gowns with sheer pantyhose and stilettos, pink negligee he orders online and manages to squash her awkward appendages into.

He never fucks her, he didn’t make her for that. He whispers that he thinks she is beautiful and he is grateful for her company.

Earliest Hours

The earliest hours of the morning are when I miss you, when the city is dark, quiet and abandoned but for a few solitary wanderers, stumbling drunks and a woman quickly hustling home after popping into an all-night convenience store to pick up Panadol and tampons.

As I unlock my car, the jingle of my keys is a little too loud in this otherwise abandoned car park building. Suppressing a shudder I climb in and turn the ignition, the engine comes to life and my music starts to play; angry rap about sex, violence and money that allows me escapism and a strange sense of being powerful. I take the tollway home because I love crossing the Bolte Bridge slowly at this time of night when nobody is there to honk angrily at me. I admire the sparkling cityscape on one side and the strange dystopian industrial zone on the other. I notice a dark flock of birds – or maybe bats – circling around the top of the lit up pillars; it is an eerie site and for a moment I forget to breathe as I am caught up in a sense of wonder, as if this is all for me.

I think about how you’re probably asleep right now. I imagine myself turning up at your doorstep, like they do in the movies but of course I wouldn’t do that, the reality would only be awkward and stilted. You can’t go back to something that never was.

Chronic

An elderly woman boards the train carrying several bags of groceries and a middle-aged man carries a toddler on with ease. Many commuters are hunched over their phones, typing and swiping for the duration of their journey while one teenage girl is standing, one hand raised up to grip the pole behind her, the other holding her book.

I repress that familiar feeling of bitterness and envy and look down at my hands which sit placed on my lap, useable yet useless. My fingers are curled in the way that always happens when my muscles tighten and my nerves burn, I try to focus on my breathing, on mindfulness, on anything that might help my body ease up just the slightest and give me some microscopic moment of relief.

I swallow the bitterness but when it reaches my stomach it becomes sorrow and once again I find myself crying in public. I find my mind fixating on the thought of people who spend countless pain free hours on video games, who can mindlessly utilise their hands for pleasure. What I wouldn’t give to have just a few hours to paint free of pain. What I wouldn’t give to have back the freedom I took for granted until I lost it.

Pain is a demanding companion, constantly clamouring for my attention. For the last several weeks my pain has sat at about a 6 out of 10 and while that isn’t as bad as it can be, what tortures me is how little I can do about this, how it is exacerbated by any sort of use of my arms so that my only real option is to wait this out but that waiting it out only means waiting for a decrease in pain because I can’t remember the last time it went away completely.

I truly have forgotten what it feels like to be completely free of pain. Every day is a negotiation, if I decide to drive for more than an hour, I may not be able to do anything else for the day. If I decide to sit down and write an email or two, I might not be able to paint for a week; if I decide to draw for an hour, I might be in especial pain for the next three days; if I use my phone, it will hurt; if I vacuum, it will hurt; if I bake, or weed the garden, or handwrite anything, or simply sit still to read a book or watch a show, it will hurt. Writing this is definitely going to cost me, despite the fact that I am using voice dictation software to make the process easier.

I am a person who thrives on activity and creativity but doing so little now costs so much. The things I love to do the most cost so much. Very often these days, my body feels like a cage and I have to fight the irrational but powerful desire to attempt to gnaw off my own limbs.

I was chronically ill in my childhood, bedridden on and off for many years and I still feel affected by the spectre of that experience. I have memories of immense loneliness, crushing boredom and claustrophobia, the feeling of being a burden to my loved ones and the despair of not being able to imagine any sort of future for myself. I remember at about 13 years old, I started thinking regularly about suicide; the idea enticed me, it seemed as if it would be an incredible relief, especially if I could find a way to do it painlessly and quietly, but the thought of causing my family that sort of pain held me back. I’m glad that despite my self-esteem being devastated by my illness, I was still able to understand that I was loved.

The other thing I remember from that experience was how many people told me I was faking it. Kids at school, their parents, family friends, relatives. So many people told me I was faking it that to this day I somehow don’t quite know if I was sick for all those years or if it was perhaps some early manifestation of the anxiety and depression I experience as an adult but now have the self-awareness and coping mechanisms to be able to manage relatively well.

Children have few defences against the unkindness and scorn of others. I felt an incredible sense of shame and began to dread being seen by people, for fear they would turn to my parents saying “she doesn’t look sick at all!” As an adult my response might be along the lines of “but you’re sure as dumb as you look!” but as an 11 year old, I just felt judged. Ashamed. Grotesque somehow. I can’t articulate why exactly, but I felt like I was failing at being what I was supposed to be and this made me feel ugly.

If I’m honest, I often still feel that way now. When I was a child it was Glandular Fever left undiagnosed for too long that became many years of Chronic Fatigue Syndrome culminating in a deep and abiding depression that I only managed to pull myself out of when I dropped out of high school, where I was too far behind to ever catch up, put together a portfolio and went to art school. I then had seven of the best years of my life, four years of art school and three years of working and living in Melbourne. Then I got Repetitive Strain Injury in both my arms which only recently has been given the tentative (but I believe to be correct) diagnosis of Thoracic Outlet Syndrome.

I could write about going through almost 5 years of unsympathetic doctors, misdiagnosis, misinformation, and bad medical advice that exacerbated and worsened my injury. I could talk about the miserable attitudes of the places I worked. I could talk about the incredible amount of money spent desperately trying to find a solution. It might be cathartic to write about those things but it would also fill a novel and be incredibly boring for anybody who is not me.

Instead, I will simply say this: for the longest time I blamed myself for my RSI. I told myself that I worked too hard and had caused the injury and a few years into my RSI, I told myself it was my fault that I wasn’t better, I hadn’t worked hard enough at fixing it. Basically, I blamed myself for working too hard and then blamed myself for not working hard enough.

We get told two stories in our culture. The first story is that if you want to succeed, you have to work hard, long and passionately. When I did that, it hurt my body. The second story is that if you are sick or injured, you can overcome it through sheer force of will and possibly a montage involving drinking kale juice, running along a beach and pumping iron with the assistance of a hot personal trainer. I’ve tried to get better in so many different ways and I continue to do so. Sometimes I do come across things that help and improve my quality of life but I am yet to climb Mount Everest using nothing but my teeth.

And sometimes I give up in despair. In fact it is a regular occurrence. There have been times when I have said “FUCK IT” and painted for too long, spent too long on the computer or neglected to do my stretches and exercises because sometimes they feel futile and I am just so tired of trying. During those times that I give up, I feel overwhelmed by the enormity of my failure and the physical pain feels like punishment for my weakness of will.

There is another story we tell ourselves in our culture and that is regarding the omnipotence of our doctors. I’ve lost count of the times I’ve been in conversation with someone who has repeated over and over again “Surely there is SOMETHING they can do! I can’t believe there is nothing they can do!” But the truth is bodies are complicated, medical science is still playing catch up and there is so much we are yet to understand. Until relatively recently, RSI was considered psychosomatic (an attitude I’ve seen still reflected by some of the doctors I have seen) and even now it is poorly understood. The surgeries are crude and have a poor rate of efficacy, in fact they can make the problem worse. I have tried a great multitude of treatments and the best results I have gotten is from deep tissue massage which only serves to relieve the pain temporarily, not fix the underlying cause.

But that attitude people have of doctors being all knowing, of medicine having a solution for everything – that is damaging. It hurt me when I followed poor advice and worsened the damage on my body. And it hurts me now when people don’t believe this has been as hard as I say it is. Effectively, I feel they are telling me that I haven’t tried hard enough.

I think I can understand this. I think that when we look at other people’s problems, we imagine that we would not get ourselves into such a situation. We like to believe we are smarter, stronger, better than the person who is struggling. It is perhaps comforting to think so.

I also believe that we have an almost animalistic reaction to those who are injured or ill, a fear of being infected by them, or of them holding back the herd. Whatever it is, weakness makes us incredibly uncomfortable and I can feel that when I talk about my injury or, as I am starting to think I should more aptly call it, my chronic condition. People don’t want to know, it is perhaps easier for them to view me as weak, whiny, overdramatic. Hell, for the longest time, I saw myself that way.

Another thing I have noticed is how often RSI, particularly carpal tunnel, is the butt of jokes in popular media. It is the imaginary affliction of hypochondriacs, drama queens and airheads. It is hard to conceive of an invisible, poorly understood affliction as being life altering. Perhaps this is the other reason I feel shame. Perhaps this is the other reason I ramble awkwardly and feel self-conscious when I speak to people about my experience; able-bodied people cannot imagine what it is like to have to pay the price of pain should you choose to do anything pleasurable, productive or necessary.

The other problem is that every second person has had RSI. Well, they’ve had pain from typing too much but it eased off quickly when they stopped typing or had a session or two of dry needling. That experience of RSI is very different to mine, just as mine is different to the people who have had it for 15 years, who have had permanent nerve damage, botched surgeries and who cannot even use a can opener. Because RSI is a blanket term, people struggle to understand that the temporary ache they have experienced in their hands is different to this thing that I fear might leave me unable to work for the rest of my life, the thing that makes me jealous of people who get to complain about the hard day they had at work.

Last year I was about to turn 30 years old and not long after that would mark the 4th anniversary of when I first noticed that tell-tale tingling in my right hand while I was video editing. I was unemployed, often in pain so relentless that I would wake in tears, unable to hug my partner in bed because of the discomfort and I felt completely worn out. I was tired of fighting and for the first time since I was a young teenager, I started to think about suicide.

That time was too recent for me to comfortably talk about in detail. Suffice to say, it was a dark, miserable period and Wes says it was terrifying for him. And Wes probably kept me alive.

Wes who has supported me financially for all these years and never makes me feel guilty about it, knowing how unhappy I already feel to once again be a burden on someone, though I know he doesn’t see it that way. Wes who massages my trigger points every morning and every night so that I can sleep without my hands going numb. Wes who has held me countless times while I cried for an hour. Wes who, simply for being in my life, reminds me to be grateful.

Here is what I am grateful for. I am grateful to have a partner who is consistently and unwaveringly supportive and loving. I am grateful that though it stretches our finances to the limit, we can afford my weekly myotherapy sessions that have decreased my pain somewhat and allowed me back into the studio just a little. I am grateful for the financial support my parents offer when they are able. I am grateful for having legs that can take me on long walks when I am in too much pain to sit still or do anything much else at all. I am grateful for Netflix documentaries that keep my mind stimulated when I feel starved and allow me to travel when I feel claustrophobic. I am grateful for audiobooks; where sitting still and reading for long periods of time has become difficult and painful, audiobooks have brought reading, of a sort, back into my life and currently I am devouring everything by Octavia Butler with relish. I am grateful for the incredible comedy group I am a part of, it has given me the sense of direction I lost, the creative outlet I craved and the sense of identity I needed. I am grateful for the incredible network of people I know who fill my life with colour, creativity and support. I am grateful for the stray cat, Dicey, who followed us home and now follows me about the house, keeping me company when I am broke, sore and sad and giving me a sense of having a future. I may never be rid of this pain, and maybe, Atheist’s God forbid, it may even get worse as the years go by, but for perhaps the next 16 years I’ll have a cat with a tummy that is soft, furry and made of joy.

It’s hard to talk about how my RSI makes me feel, how emotionally challenging this has been because I have felt so ashamed for how much this wears me down. But here it is, the truth is this injury has changed my life dramatically. In many ways, my life is worse, everything is harder and my future feels shaky and uncertain. Often, I feel vulnerable, lonely and unhappy. Sometimes I feel bitter, petty and jealous. Sometimes I feel grief for the self I was briefly able to be, the incredibly capable self who earned her own money, painted all day when she had the time, read in her spare time without pain, wrote constantly in her blog and looked towards her future with excitement. Sometimes I feel irreparably broken, indescribably weak.

But recently there have been some minor changes to that mindset. Recently I have stopped blaming myself so viciously for my injury, I refocused that anger on the doctors who told me there was nothing wrong, the work colleagues I had to battle simply to get basic ergonomic equipment and the society we have created that values ambition over compassion, competitiveness over kindness. This has been healthy for me. I am slowly coming to understand that this is not my fault and that I have tried hard. Really damn hard.

With that understanding comes a new sort of self-esteem, the sort where I can look at myself sometimes and admire my strength, my fighting spirit and my passion that keeps me being an artist despite how goddamn hard that is now. I’ve also learned to be more patient, to sit still and enjoy watching a tiny winged insect crawl across my hand even as my body throbs and burns and I now observe people who barrel through their lives doing a million incredible things, taking for granted a million different privileges but who can’t slow down long enough to enjoy any of it. I deeply believe that the struggles I have had over my life give me a compassion that I see sorely lacking in some others who have never been ill for a day in their lives, and the perspective to value, truly value, the gifts that life does happen to throw my way. Though the price I’ve had to pay for it can feel unreasonable and unfair, I treasure that compassion and those moments of wisdom. Lately, despite the continuation of the pain, the fear, the misery… I am finding ways to be happy again. Truly happy.

This is not to say I am happy with the way the dice has rolled for me but I know that it could be worse, so much worse and so I remind myself that in a universe indifferent to us, we are simply lucky to exist. On the days when my pain calms down and I can paint for an hour, I am so grateful and so happy that for a while everything else flows into the periphery of my vision. Joy is so precious to me that when I have it, I feel the ever-loving fuck out of it.

And of course I will never give up. Acceptance is different to defeat. Maybe I will never get better but I will never stop trying. The alternative choice is unacceptable to me.

Yesterday I found out that Invisible Illness Week had just passed. I missed it because I haven’t been online much recently due to a spike in my pain levels. It motivated me to write about my experience and I have endeavoured to be as honest as I possibly can. It feels uncomfortable to speak quite this openly about my experience but reading about other people’s struggles has helped me to feel less isolated and to find new reservoirs of strength within myself. I’m hoping perhaps my truth will resonate with someone else, perhaps even help someone.

I’m going to post this now before I chicken out. If you made it this far, thank you so much for reading. I think that most anyone who has ever hurt will agree that being listened to is all we really want from you.

Soft, furry and made of joy.