Heavy

Deciding to live is not the same as wanting to live. This depression is thick and heavy, I feel immobilised. I understand that there are still good things and that there is still hope but that only sits in the part of my brain that deals with concepts, nothing feels good and I guess feelings are the stuff of motivation.

I had a moment of feeling good the other day. The helplessness had become unbearable and so I worked on my website for an hour. It felt… good. Yeah. Good. Because there I was, there was the person that I love to be.  I am so capable of the things I love to do, the stuff of my art, the thinking with my arms. How do I explain that I think with my arms? How do I explain how much it breaks my heart, every single day, to struggle to simply hold them up?

I know I sound like a broken record. I know I am wallowing in self-pity, tortured by the person stuck inside my crippled body. I know there are people who get on with things, no matter what and I fear I am not one of those people. I’m trying. God, I’m trying. I diligently attend my therapy, I try to make myself do things that will be good for me but without my arms to think with, it all feels like a shitty substitute for the life I want and it’s hard to muster up the positivity to feel like there is a point to this. I’m supposed to accept, to adapt, to move forward… and maybe maybe maybe I could actually do that if I knew where I was going but I’m still waiting for the big unknown of surgery.

And it’s two days later and I am still paying for that thinking with my arms for an hour. My body doesn’t allow for much of that anymore. Yesterday, my battle for the entire day was just continuing to sit up because my head felt too heavy and my arms were enormous weights pulling on my neck, stretching what can’t be stretched because it is trapped in spaces that are too small. Nerve pain is like when you lower your body into a bath that is far too hot, you just want to get out get out get out get out get out get out get out but you can’t you can’t you can’t you can’t can’t. You can’t.

I went on holiday recently, two weeks in New York and my body demanded my attention the whole time. I understood then that there really is no escape from the prison of my flesh. It was devastating and lonely. Crying on trains in New York was good though because nobody even cares. Why can’t the world be more like that? Why can’t we just cry when we’re in pain? Why do I put so much effort into concealing how I feel so that people won’t reject me? Is pretending to be ok a prerequisite of love? Life is hard and hurts and why do I feel so much fucking shame for feeling so weakened?

Fuck.

I’ve not been okay for a while now but there have been good days among that. I’m not feeling those good days anymore. I’m just waiting. Waiting for a medical system that is slow, indifferent, expensive and has almost entirely failed me so far. Waiting for the day when I have muscles and bones cut from one side of me. Then the six months of healing. Then, best case scenario, I get muscles and bones removed from my other side and spend another six months healing. And a year later, if I’m really lucky, I might be a little better.

See this is all I can reasonably hope for, is that I might be a little less crippled, or at the very least, that I don’t keep getting worse. Best case scenario, I can be a little better. But I’ve already watched my life grow smaller over the last seven years and I’m so tired and so bitter. I hate watching people do what they love, I see their freedom and it makes me feel so sick with jealousy. And I hate them for not knowing how free they are. And I hate myself for becoming this. I feel like I’m getting old and ugly. I guess I should be in my life, I guess I should be using what I do have and being grateful.

But I’m just not. I’m trying so hard to be. But sometimes the battle just to remain sitting upright, or to not cry in pain when I’m socialising because I want people to still love me and not grow tired of the tedium of my existence… that just depletes me of my mental and emotional energy. I’m so low on motivation. I am afraid that the smaller my life becomes, the harder things become, the less I will have to offer. I feel distant and disconnected. I fear becoming unlovable.

Talking to other disabled people helps sometimes. They understand. They know what a battle just getting through a day is. But nothing seems to stick. Deciding to live is not the same as wanting to live. I’m not ok but I really don’t know what to do about that. I’m doing things, I’m getting therapy, I’m taking on projects but everything hurts and I’m struggling to see the point.

I’m trying. I’m living for him but struggling to want to for me. I guess I still feel some hope but I don’t have anything like faith. Inside my head I observe myself screaming “help” but what the fuck does that even mean.

Shame is Boring

Recently I started making my own little youtube videos and though I’m still feeling awkward as I learn to navigate a new medium, I am finding it to be a very exciting, raw and direct means of communication and self expression. I feel tremendously excited but also incredibly vulnerable, as I allow my imperfections and awkwardness to be seen.

But I am proud of this video particularly.

Cities

Something past midnight, rural Victoria. Fog illuminated by headlights and very little else but for the painted lines of the road falling towards us. At some point the grey, yellow, pinkish murk melts away to a deep black dotted with artificial lights like carefully arranged fireflies. Then suddenly the city. A million lights that tremble in the autumn chill. Ephemeral phenomena. All of it. Cities are so fucking beautiful when you remember that in the history of existence, their appearance is so sudden and so temporary. These monolithic beasts of glass, steel and concrete reveal themselves for what they are… fragile and fleeting. Shimmering dots of light, like the glow of stars that died a hundred million years ago.

in and out

The rules state that pain must be internal. Like blood, milk, shit, piss, cum, tears, farts, ugly laughs, dirty sex, pubic hair… We are horrified by anything that highlights the truth of us as vulnerable, organic, meaty, stinking flesh. We love fruit when it is ripe and are revolted when it rots. We are tormented by taps that leak.

Those who expose the truth of us too freely are labelled impolite or scary or dangerous or insane. They are shunned, they are punished. If we don’t stone them to death, we laugh, we gossip or slowly, cautiously back away.

There are so many things we have all silently agreed not to talk about. Don’t talk about the things you want the most. Don’t talk about the things that really hurt. Don’t tell us how you really like to fuck. Don’t tell us how scared you really are. Don’t be too angry. Don’t be too much. Don’t.

The veneer of civilisation is thin and tenuous. We guard it out of necessity, it’s a useful structure, it’s a good thing that we’re not always raping and murdering each other. But within our constructed comfort, we become so fearful and feeble. We forget the flexible pragmatism of social structures and mistake them for inviolable law. We make Gods and use too much antibacterial hand wash and have too many four-wheel-drives in the city.

It’s claustrophobic. It’s suffocating. It makes deviants of us all and when we don’t fit in for our sex, our skin colour, our poor health, our pain… the feeling of isolation is devastating because we are social creatures who long to be loved. We fear that if we show the things we truly are, we will be shunned. But then we are alone and our loneliness accelerates our rot.

I hate it. I hate the artificial walls we thoughtlessly and religiously maintain. I grow all the more determined to smash them and this involves a process of directly observing myself and then attempting to communicate those observations. I try to catch myself when I engage in the act of self-censorship, I ask myself to be less fearful.

So tonight I’m going to attack a personal taboo that I never talk about publicly. Today I received a blow I’m struggling to cope with. The specificities of it don’t matter in this particular piece of writing, what matters is that tonight I was screaming at somebody who probably loves me more than anybody in the world because I was furious at the world and furious at him because sometimes he has been my only reason for living and today I hated him for that. For keeping me alive. For not letting me give up. For being my fucking hero.

I am not proud. I am whatever is the opposite. Ah, ashamed. I am ashamed. As I should be. My pain is not his fault. He tried to help me and I bit him.

He went to bed and I didn’t know what to do with myself. I wanted to paint but could not. I wanted to leave the house but my arms were throbbing in too much pain to drive. And though I was feeling self-destructive, I wasn’t up for going walking in the night-time and inviting other people to do the job for me.

So… I have no idea why, but I filled the bathtub with my UHT, lactose free milk that for some reason I always feel a mild and undefined embarrassment for drinking. Then I sat in the bath, singlet and underpants still on and gently pressed my surgical knife into my thighs to make the most slender red lines. It wasn’t a violent act, it required barely any pressure whatsoever.

It calmed me. Just like it calmed me when I used to engage in the same activity (minus the milk) as a chronically ill teenager. It gave me that same sense of control and quiet and I was in awe of the beauty of red blood on white milk. The bathroom was perfumed by the odor of milk. I have never experienced a room full of the smell of milk before. That comforted me. I swirled the creamy liquid around and watched the water turn pink. My mind became empty, the way it used to do when I would paint. The way it did when I smashed those glasses. 

Even as I write this I am so aware of how it could scare and anger people. I am not keen to be perceived of as crazy because I do not truly believe I am. What I think I am is someone who, like many people, is experiencing a lot of pain and sadness and is trying to find a way to effectively express, communicate and manage it. I’m not advocating for self-harm but… Fuck, maybe I am. Maybe tonight I can’t think of anything wrong with the pretty and harmless marks I made on myself.

I took photos on my phone. I think that they are beautiful and I love the raw immediacy of cell phone photography. I want to post them here and am going to. Even as I know that this thing which I think of as beautiful and vulnerable will be seen as… ugly, stupid, childish, scary. Even as I fear being feared and thought of as crazy and no longer taken seriously.

That’s ok. I have to be ok with that. I want to be brave. I want to be a person who isn’t afraid of the things that most people are.

The marks on my leg sting a little but a lot less than my arms hurt every day. I guess I am a mess. I guess maybe I need help but I also feel like… this isn’t a cry for help. This is… I don’t know what this is. I’m just tired of feeling trapped. My body is a cage I cannot escape because it is a tangible, physical thing but those invisible walls we construct, I just want to burn them to the ground and then stand in the ash and embers, screaming like Xena Warrior Princess. This is how I obtain a sense of power and that’s no small thing.

Procrastibation

Though I had been sexually active since I was 16, I didn’t learn how to orgasm until I was 22. So my first orgasm via masturbation wasn’t accidental, it was the result of a concerted effort, a campaign to cum that involved hours and months of exploration, wise advice from a sex worker friend and a savvy investment in an expensive vibrator from a female owned and operated toy store. I still remember how relieved I was to discover that I wasn’t broken, that I was completely capable of climax, I think I even cried.

That year, I spent a lot of time wanking in my tiny room in a student hostel overlooking Swanston Street. It was a joyous and unselfconscious experience that was dampened only slightly when one night I heard a bunch of drunk students making moaning sounds outside my room and then laughing uproariously, making me embarrassingly aware of how loud and obvious my activities had been. Orgasm was an exciting new discovery that I was a little bit obsessed with, sometimes I masturbated for hours, listening to music and focussing my attention on my clit. I was astounded by my own capacity for pleasure and it was entwined with my excitement about the new life I was starting in Melbourne.

Today I watched porn that I find morally objectionable while cumming distractedly. Procrastibation, the art of wanking to delay facing the mundane pain of reality. My mind wandered, I was feeling guilty and unattractive. This stuff is the junk food of sex. A little bit is comforting but too much is heavy lethargy.

I did house work. Necessary activities that give me little pleasure and also feel like an avoidance of more important things which is probably partially patriarchal smegma, something to do with domesticity and traditionally female activities being undervalued but it’s also because I just don’t want to be doing this. I want to be painting and working and able bodied and capable. I am avoiding things, I’m avoiding doing my physiotherapy that lately feels sort of futile because even though I know it helps, it doesn’t help a lot. The payoff feels like peanuts. Insulting and unfair.

I hate myself for that last bit. Life isn’t fair, bitch, get over it and get on with shit.

I bring towels in off the line outside because there is a forecast for wild weather. When I start folding them on my bed, I discover they are covered in tiny little winged insects. The bugs are coupled off in pairs that seem to be attached to one another by the rear end. Teensy little creatures fucking on our flannels, arse to arse, bound by the bum. I feel a stupid guilt for bringing them inside; perhaps now their mating is useless and pointless because how can such tiny creatures find their way back outside? Will they live and fuck and die in vain? Will I?

Stupid. Stupid useless thoughts, bitch. Guilt is boring. You’re being boring. The universe is brutally indifferent and existence is dumb luck. Just keep trying until you die and stop wasting your time agonising about wasted time.

I probably shouldn’t wank again today though. I really need to wash my hair.

Taste

The taste of arousal in my mouth is the same as inspiration. Will that even make sense to anyone? I get a taste in my mouth when I have an exciting idea for a painting and I get the same taste when I want to be fucked. Well, taste is the closest way I can describe it. It’s like a feeling of warm air inside my mouth that gets registered by my taste buds.

Another commonality in my experiences of art and sex is that they are both best when uninhibited. The best fucking happens when you are so immersed in the sensations and emotions of the experience that you don’t care about the ugly sounds of squelching and screaming, the comical faces, the abject imperfection of the body and the immense vulnerability of exposure. The best sex happens when you don’t try to tame it or make it presentable. Don’t pretend that the porn you like best is pretty.

It’s the same with art. My favourite sort of art is… the beautiful grotesque. The ugly honest. The awkward vulnerable. The spectacular perverse. I love when art tells me things I don’t want to hear but does so in magical ways. I love art that excites and confronts and challenges.

I love being slapped in the face. Literally and metaphorically. I love one hand around my throat and the other violating my cunt. That one I mean literally but I’m open to creative interpretation.

Right now, I’m way better at fucking. My art is still far too mannered. I’ll work on that.

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Old selfie taken in 2013 for a fetish website.

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.