Suicide and Love

(Trigger warning for discussion of suicide and disability, this is actually a positive post but it’s still very intensely emotional stuff.)

Earlier this year, I stood on the edge of a train platform in New York City and nearly jumped. I had been struggling with suicidal ideation for the last two years, my chronic pain had pushed my brain into a clinical depression that was almost relentless and I had experienced several major mental breakdowns, the accumulation of which, coupled with a traumatic event, had left me feeling utterly useless and hopeless and so I stood on a train platform and contemplated jumping. In fact, the only thing that stopped me was the thought of Wes, one of my partners, having to pay a fortune to have my mangled body shipped back home. Sometimes I am still blindsided by the horror, the sickening realisation of what I nearly did.

Lately, my life is really incredible. My arm has been slowly improving and I’m getting back the things I thought I was losing forever, my ability to paint and write and drive and just… just live with some freedom of movement, without my body feeling like a cage that is shrinking smaller, smaller, smaller. I had lost all hope that I could ever be so lucky and so I feel my luck with an intense gratitude and a deep, heartbroken sadness and compassion for everyone who is currently lost, and scared, and hurting and may never be as lucky as I am.

I am also intensely aware that I don’t want anyone to think my life is only better now because my arm is getting better and frankly, that isn’t true. My life actually started getting better before the surgery, it started getting better on the night when, back from New York and in an abject, miserable, broken state, body trembling and eyes red from crying for days, I screamed at Wes to help me, to please help me, please why wouldn’t anyone help me.

He called suicide hotlines and they were not helpful (this is not a criticism of that resource, it’s just the advice that was offered was… ok it wasn’t useful so maybe this is a criticism?) and so instead he called my mother and with her advice and the help of some of my friends and lovers, Wes organised for me to go on suicide watch. For the next several weeks, I had somebody by my side every day and through that process, I realised how loved, how very loved I was. I realised how important love and community and kindness is and my life started getting better.

Then I started meditating, and reading books on shame and daring greatly and grief and finding Buddhism, and practising self-compassion and loving kindness and learning from the wisdom of an ancient philosophy that someone called “positive nihilism” which suits me well as it’s is all about love, connectedness and how to navigate the facts that suffering and change are unavoidable truths.

And I went on SNRI antidepressants as we came to realise that though my reasons for feeling unhappy were valid, nonetheless my health had pushed me into a clinical depression and my brain needed some assistance climbing out of that. And I was already getting therapy and that helped a little though not as much as the support of my friends and family because the mental health support system is overstretched and besides I was tired of the dehumanising process of being a problem to be fixed, that was in fact part of what was hurting me so badly.

And I went through loss, I had two important relationships fall apart at the exact same time and felt the ache and hurt and heartbreak and confusion that comes from conflict with those you love and then I practised self-compassion and honouring my heartbreak and sadness and letting myself move through all the stages of grief and anger and loss and letting go. I am still moving through those but the process of doing it with a great deal of compassion for myself is strengthening me further as heartbreak doesn’t have to harden me or destroy me, but instead can soften me to the pain of others. And as my compassion grew and therefore my sense of connectedness to others, my life started getting better.

And I started letting go of shame. I was shaming myself a little less for not earning money and struggling with mental health problems and I was valuing myself a little more for the contributions I was making in the world. And I realised my principals are entirely about kindness and that made me feel strengthened and driven. I decided I was going to be ferociously kind and I started to get more in touch with my anger (with unfortunate mishaps along the way because I’m still working through trauma and anger and it’s messy stuff) and I started to get more in touch with my pain. And my life started getting better.

Earlier this year, I stood on the edge of a train platform in New York City and nearly jumped. Sometimes I am still blindsided by the horror, the sickening realisation of what I nearly did. I saw oblivion and what I went through had the trauma of a near death experience. And now I look back, I can see that during that time, I felt utterly alone, utterly worthless and utterly helpless because I thought that my disability made me unworthy and meant I could not live a full life.

So though my life is definitely made -significantly- easier because of the surgery and the fact that I’m one of the lucky ones who might be able to get better, I want to reject the toxic notion that the only reason my life is better now is because I am starting to become more abled bodied, more “normal”. Yes, it’s true, I’m happier because I’m seeing that I can start to follow my biggest dreams again. Yes, I’m happier because life is fucking easier. This is true. But it’s not the only truth and not the only possibly positive outcome.

Because it may not have been the case. It was entirely possible that the surgery wouldn’t work and the thing I realised, before I went under the knife, was that even if my body didn’t improve, I could still live a good, full, rich life, it’s just I’d have to work a whole lot harder than most people and I would need to surround myself with gentle people who would not resent me for the things I could not do or be. In fact, I’m still disabled it’s just… less than I was.

So I really want to say this with as much emphasis as I possibly can… if you know someone who loudly complains about their pain, please think twice before you shame them for “whinging” because you don’t know what it feels like to be inside their skin. If you know someone who is engaging in acts of self-harm and suicidal ideation, please don’t dismiss them or get angry at them for the state they are in. It’s so hard to look straight at pain, it’s so hard to look at people who are suffering because the sheer existential horror of it scares us and so we’d rather look away in fear and disgust. But I need to say this with as much emphasis as I possibly can, the only reason that I am alive today is because of the people who didn’t walk away, didn’t angrily chastise me, who instead sat with me through my pain and reminded me that I could have joy. The only reason I am alive today is because of the people I gave love to and who loved me in return.

Let me say that again. The only reason that I am alive today is because of the people who didn’t walk away, didn’t angrily chastise me, who instead sat with me through my pain and reminded me that I could have joy. The only reason I am alive today is because of the people I gave love to and who loved me in return.

Disabled people and the chronically ill can have amazing lives, do amazing things, make the world richer, kinder, wiser. But so many of our struggles are invisible and so much greater than you may perhaps realise so please, as much as you can, strive to be patient and generous and kind and to realise that though someone might have more struggles than you, it doesn’t mean they can’t have brilliant, beautiful, valuable lives. Please, I implore you, behold the pain of others and of yourself with gentleness and kindness, not pity and anger.

My life started getting better when I started being kind to myself and surrounding myself in kindness. That was the thing that saved my life and made me want to stick around in this world for as long as I possibly can, love. Just love.

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Smash

Holding itself together is Life’s main job. We create ourselves out of the bits and pieces of stuff lying around and then spend the rest of our time desperately grabbing at the detritus of ourselves as time rapidly and indifferently happens and our bits and pieces crumble into dust and atoms that we can no longer grasp. It happens to us at different rates, those who have health problems in our youth perhaps witness the horror of our helplessness a little earlier than most. And sometimes there is an ugliness residing within those of us who have young broken bodies because we see the dumb bewilderment and despair on the faces of people who only experience physical suffering in their elderly years and our sympathy for them is tempered with the bitter knowledge that they never had the wisdom of experience to comprehend our own sort of agony when we needed it. So they are as alone in their pain as we are because we hate them for suffering at a slightly different frame rate to us. We are not as compassionate as we think we are and admitting that about ourselves is perhaps the most compassionate thing we can do. Hold my hand, tell me you love me, but don’t pretend you understand and I will do the same for you. Suffering is universal yet painfully solitary.

I am furious all the time. Furious at my mortality, furious because when I scream “help!” nobody can because that’s just not how it works, furious at myself for being so deeply involved in this, for not being Zen enough, Buddhist enough to rise above this. Sometimes I can sit with this. Often I can’t.

Holding oneself together is a full-time job, a hard job. Lately my edges have felt particularly crumbly and I haven’t been able to hold my consciousness above it, instead it is like I want to succumb to the violence of disintegration and in fact contribute to it, like I can no longer endure this laborious process of paddling my kayak upstream but if I paddle while going down with the current, it will be fast and glorious. But then everything will be over quicker which I don’t want because my belief systems have me close to certain that there is nothing over the waterfall but for empty oblivion and despite everything, I adore being alive. In fact, that’s what makes it so fucking hard, this goddamn mortal shell. This moronically limited mass of meat, fat, bones, genetics, electrical signals and emotional baggage. Biological machines are by their very nature imperfect, life has a desire to exist but there is no law of the universe saying it has to be easy.

Today is one of those days where I wake up sore. It’s perhaps been been months since I’ve had a proper sleep because my body is failing me again. I woke up with no fight in me, I would probably fall into one of those depressions where you sleep all day but for the fact that my body won’t allow that sort of escapism. So… I don’t know what have been doing with myself today. Drifting. Wearing my ugly grey dressing gown and filling the sink up with hot water to do the dishes. Trembling with frustrated fury.

I screamed in rage and hurled a glass at the ground.  What had been a functional object of substance, of density and mass, shattered into tiny fragments. For a beat, I felt horror and shame but one of the luxuries of being home alone is that you get to be crazy when you need to and so I started taking photos with my phone. Then I grabbed another glass, launched it at the kitchen floor and delighted in the eruption of my colourful cup from Kmart.

I luxuriated in the madness of it, of wasting resources, money, of creating the loud and ugly sort of sounds that might disturb the neighbours, of watching benign objects that I had comfortably lived with exploding into dangerous slivers that can get stuck under the skin and draw blood. It was the most fucking beautiful thing I had made in years. A moment of violent intensity glittering amongst the mundanity of domesticity. I broke two more glasses and then I stopped. A cacophony of clucking, the neighbour’s chickens must have been startled by the sounds. Maybe I smiled.

I felt better. The light and colour through the glass moved me and I took more photos, dodgy documentation that is not the actual experience. I felt better. I cleaned up. I resolved to feel no shame about this, to strive not to hide the ways in which being broken breaks me but to accept this non-acceptance as part of the price of existing. To write about these things and share these things and allow myself to fall into these things, do not be afraid of the mundane ugliness of it all but to find the poetry in the misery.

For a brief while I had a lover who used the word “catharsis” a lot. He understood something about that which has stuck with me. Broken glass is fucking beautiful.

Discovery

“Slow the fuck down you raging dickhead!” a red-faced, bald man screeches angrily at his bull terrier as it drags him towards the water. The water in question is Edwardes Lake, a brown, soupy, polluted puddle in a pretty little park in Reservoir. I’m here by accident.

Today has been one of the days that are so common in my life right now, when my arms are too sore to do much of anything and I find myself at a loose end. I drift through these days feeling listless and without direction. I’m bored and feel boring. There was a time, pre-injury, when I felt inspiration to be endless and I channelled all that through my arms but the last five years, this has led to physical pain. So I’ve learnt to suppress inspiration when I feel it and mostly I’ve avoided going to galleries because the first wave of excitement I feel is always quickly followed by anguish and a desire to just… not exist.

It used to be that I channelled all my existential angst, dread and joy into making. It used to be that my arms served as a conduit for the intensity of how I seemed to feel pretty much everything. Now this quiet depression, this gentle fog, this numbing of emotion has been a survival strategy.

But it’s so tedious. So I try to find something to pass my time and often end up exploring the surrounding suburbia on foot. I think it takes a slight edge off my desire to travel and I get a thrill from making discoveries such as the house that has a cat tree in every window, old crumbling chimneys, or the time I found an abandoned Bunnings Warehouse full of incredible street art that was demolished by the time I came back to photograph it a few weeks later.

Today, as I walk around the lake, my first discovery is the inflamed man with the enthusiastic dog. My second discovery is a turtle. It is sunbathing on a log with its long neck stretched out as if it is attempting to get a tan and there is something about this image that causes the fog to vanish in burst of happiness. Mood dramatically altered, I continue my walk, often stopping to watch the varied bird life and to think.

I think about how I have spent the last five years mostly just passing my time, waiting for my arms to get better so I can go back to being the self I once was. I realise that I have let a lot of time slip past as I’ve waited to get better. I think about my hopes that I will someday be able to paint prolifically again but how I can’t let the present go to waste while I wait for a utopian future. I think about how in this protective fog the colours are less spectacular and I feel like a dusty old book that nobody wants to read. I think about the people around me who laugh and cry and glow with their passions and I want to glow again. I am becoming increasingly determined to find a way glow again, not sporadically as I currently do but with a more sustainable regularity.

I reach a point of the park where very tall trees stand and sway in the hot, dry wind that is suddenly central in my awareness because of the enormous roaring sound the trees are making. I stop to listen and watch the water ripple while dramatic, dark grey clouds swirl slowly in the sky above. After a while, I sit down and start to collect tiny little pinecone things which I have decided I will form into a word. It’s hardly an original idea but I decide it will be a fun creative exercise and that I am going to start challenging myself to find more constructive ways to channel inspiration without hurting my arms. Little things, humble things, things that might help me to find myself again.

While I am collecting the little pinecones, Wes calls me on the phone and we have a discussion about what word I’ll write. Wes suggests “graffiti”, I ponder over “mistake” but eventually I decide I will write a small sentence documenting a moment that meant something to me today.

I try to assemble the pinecones into letters but the wind is so fierce that they keep blowing away. An old man wanders over, eyeing me suspiciously and asking if I need help, I thank him, no, and decide I need to find a more sheltered spot. Eventually, I find a place that is safe from the wind and I write my message, albeit awkwardly, due to the curved and slippery surface I am working on. I wonder who might see my message and what it might mean to them. I think about the ephemeral nature of site-specific works and how it relates to art and the search for meaning in defiance of mortality. I think about how important context is and how the necessary choice of installation space will surely effect a viewer’s reading of my message.

Then I take a photo with my phone and go home to share it.

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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.

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.