Disability and Love

Recently I was talking with some women who have chronic health issues and though our health problems manifest differently, we all spoke of having similar insecurities around talking too often or too openly about our troubles. These insecurities come in many different flavours; we the chronically unhealthy are afraid of being perceived of as whingy, boring, pitiable, crazy, energy vampires… the list goes on. Because of these fears, we are constantly engaging in a juggling act between our inner turmoil and our outward appearance – from one minute to the next, we are weighing up whether or not we should speak up about our struggles.

Personally, for every one time I decide to talk about my experiences with chronic pain, mental illness and disability, there are twenty times I keep quiet and hide how I’m feeling so that people won’t tire of me. I often challenge myself to speak publicly of my struggles because I know that when others do the same, it makes me feel less alone and better about myself and I believe this encourages compassion and connection. I have seen the evidence of this because every time I speak candidly of my problems, I will be the recipient of a multitude of messages from others who are going through their own trials and who are grateful for my honesty. Conversely, I know that if I speak of my problems a little too often, people will experience compassion fatigue and start tuning out, unfollowing me on Facebook and even resenting me. This is not paranoia, this is the lived reality of many who have walked the chronic condition walk and we have all experienced the exasperation of someone who is sick of our complaints. Even if that someone is simply ourselves.

Recently a friend sat on my couch drinking tea and, through tears, she spoke of her struggles with chronic pain. She confessed to frequently choosing to make the decision to smile through her suffering when in the company of others because she didn’t want to lose their love. She said she felt that was probably a bit of a dark and bleak outlook but I told her that I do the exact same thing and do not feel any shame for sometimes choosing to conceal my misery. Why? Because, to some degree, I am in pain almost all of the time but I don’t always want to talk about it, nor be viewed as someone to be pitied. Because sometimes I like to pretend, just for a while, that I am able bodied and as capable as I’d like to be. Because often I am miserable and happy in the exact same moment.

But most of all… because I need love.

We need love. Humans are social animals and love gives us an evolutionary advantage – love forges the bonds that incentivise us to look out for one another. Within a capitalistic and individualistic society, we create and revere a mythology of the self-sufficient and self-made person but the moment you examine that idea, it disintegrates like the illusion it is. No man is an island, this is so obvious that it’s cliché and yet we forget it is true.

My disability makes me acutely aware of the interdependency of humans and, well, all life on this planet. I have many needs; food, shelter, medicine, art, fun… and since I don’t qualify for any disability benefits in this country I am not a citizen of, all my needs are paid for by people who love me. Learning to be comfortable and at peace with this fact of my life is an ongoing process and it is still easy for me to fall into a spiral of shame about the perceptions I sometimes hold of myself as a worthless bludger. I counter this negative self-image with evidence to the contrary – to those that support me, in return I offer the things that I can, housework, food, adventures, sex, art, comedy, connection, love. Perhaps my acute knowledge of my own need has made me particularly talented at the last two, like they are skills I have honed out of necessity. If I love you well, you will love me well and then we can really take care of each other. Not co-dependent but interdependent.

Except… sometimes it feels imbalanced. Chronic pain and health concerns often preoccupy me and sometimes leave me feeling so deeply frustrated, depressed and miserable that the offerings I make in exchange for love seem lesser, stunted as they can be by the exhaustion and bitterness I sometimes feel. It’s hard being in chronic pain and I’m harder to love when I am in chronic pain. When someone you love goes through a personal tragedy, it is easy to support them because you know at some point there will be a light at the end of the tunnel, that they will most likely be better someday. With chronic health problems, there is not necessarily a point where the person gets better and things get easier (though certainly we develop the most incredible coping strategies!) So much of living with chronic pain is facing the same problems day in day out with no necessary end in sight. This is exhausting and also incredibly tedious. It tests all but the strongest of bonds.

This is not to say I am unlovable. In fact, I am blessed with a whole lot of love in my life and like I said I work hard to earn and sustain that love. However, only a few of my truly closest people get exposed to the complete truth of me – that sometimes loving me is a lot of work. I cry, a lot. I hurt, a lot. I feel, a lot. For the last couple of years, I’ve battled suicidal ideation and pretty serious mental health problems as a direct result of my physical health struggles. Often, I am insecure. Often I am lost. Often, I am exhausted. Sometimes loving me is a lot of work.

But, I repeat, I strive to make it worthwhile and I have been told it is. And lately I believe it. Lately I can see that my life experiences have given me the ability to throw myself into joy, when I receive it, with the wild abandon of someone who doesn’t take joy for granted. When I feel freedom I feel it with an exuberance and intensity that I believe is infectious. Living on the periphery of society has the incredible effect of making me less concerned with abiding by its rules, rules which I have forgotten or never learned in the first place. My own struggles have given me a deep supply of compassion for the ways other people can struggle and I believe this has made me into an open minded and caring person. Finally, I love with the intense gratitude of someone who knows exactly what a gift of time, energy and vulnerability it is. I do not take love for granted.

Sometimes when friends read the things I write online, they exclaim to me that they had no idea about my struggles. They tell me, with kindness and generosity that makes me adore them, that I do not have to hide it from them but the honest truth is… I do. Sometimes I do. And I want to. See, the thing is, if I complained to you whenever I hurt, I’d be a cracked record that you’d soon tire of listening to. This is not your fault, or mine, this is just the truth. Chronic health problems are boring, tedious and exhausting. If I showed you how I’m really feeling all of the time, if I let you know every moment when I am weakened, you wouldn’t want to be around me. And that’s fair because you need energy to fight your own battles. My struggles might be greater than some able bodied people, but that is, to some degree, something I have to face on my own. This is the juggling act we all have to do between external connection/interdependence and independence/emotional resilience.

Recently, a new love came into my life and as I came to love and trust him deeply, I allowed him to see the truth of me. We loved one another passionately but witnessing my truth was too much for him to sit with and so, one night, to diffuse his own discomfort, he used my greatest vulnerabilities as a weapon. In anger, he thoroughly shamed me for the ways in which I depend on other people both financially and emotionally. His words were vicious and personal in ways that I am not comfortable writing about publicly and they continued in smaller doses over the next several months. These words had me feeling small and pathetic, precise as they were in their intent to wound me. I was looking at myself through his eyes and what I saw was a parasite. Over time, I overcame the deep feelings of humiliation and shame by realising that though there was some truth in his words because he knew me well, mostly they said more about his internal landscape than mine. Having done the work to overcome that hurt and having extracted myself (with a great deal of sadness and heartache) from that relationship, I am now feeling stronger than I have in a very long time. But it wasn’t easy.

What got me out of that dark place was love. Love from my friends, family and other partners but most importantly, love from myself. In order to survive one of the moments in my life when I was most vulnerable, when I saw my very existence hanging by a tenuous thread as my suicidal ideation reached an unbearable pitch, I had to take myself on a crash course in self compassion and learn to love myself. I talked endlessly to people who suffered from a multitude of health struggles and was struck by the similarities of our experiences and as my heart expanded with compassion for others, so too it grew for myself. I got counselling from a lovely therapist who spoke my language. I went on SNRIs to cope with the clinical depression I realised I was struggling with. I sought wisdom in the written words of others and my bibles were “Daring Greatly” by Brené Brown, “Option B” by Sheryl Sandberg and Adam Grant, “How to be Sick” by Toni Bernhard and perhaps most influential of all, I am finding myself being deeply affected and influenced by the words on compassion, suffering and kindness from Tibetan Buddhist, Pema Chödrön.

“Compassion is not a relationship between the healer and the wounded. It’s a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others. Compassion becomes real when we recognize our shared humanity.”

― Pema Chödrön, The Places That Scare You: A Guide to Fearlessness in Difficult Times

I stopped wanting to die when I started to believe I am a creature that is worthy of love, not in despite of my struggles but because of them. Because of the ways they make me the person I am today. I stopped wanting to die when I stopped feeling like a parasite and truly embraced the beliefs I’ve always held but never applied to myself; humans are social animals. The very foundations of our evolution as a species have been innovation, intelligence, diversity and in my opinion most importantly, interdependence. That’s why ants dominate underground and that’s why we dominate on land. None of us exist without support from others. None of us. None. Though I might not have the normal symbols of status and power to offer loved ones – money, a career, regular “achievements”, my offerings are, nonetheless, precious to the people who know me and who love me.

Because I am not a parasite. Chronically ill and disabled people are not parasites. We are in configurations of mutualistic symbiosis with those we love and we have much to offer the rest of the world too. Though the things we offer might be quieter, less immediately obvious, they are there and to the ones who adore us, we are irreplaceable.

So yes, sometimes loving me means extra work because I have a body that is prone to failing and that means I have to work harder to inhabit my flesh. But my capacity for giving love is momentous and now, as I learn what it truly means to love myself, I know I am worth the work.

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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.

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.

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.

Suicide

There have been a couple of times in my life where I have felt suicidal and though I’ve briefly mentioned it before, I don’t want to talk about it in detail so I am going to. When I was a teenager, I observed that my favourite artists were so often brutal, awkward and unattractive in their honesty which had the effect of making me feel more comfortable in my own skin and less alone, so I challenged myself to be the same. I still try to. Enough stalling, here goes.

I don’t know what it takes to be part of the Totes Legit Suicidal Club because I never swallowed any pills or jumped off any bridges. Though, at about the age of 12, I became very fascinated by the warning message on my aerosol deodorants “Intentional misuse by deliberate concentration and inhalation can be harmful or fatal.” I only tried to misuse my Vanilla Kisses body spray a handful of times and don’t remember much more than dizziness and once, a slightly uncomfortable headache. I remember the emotions though, I remember the shame.

The shame wasn’t about my flirtation with mortality, the shame was about my inability to commit to my demise. At that point, I had been chronically ill for some time and felt myself to be a burden on my family and to have no purpose or future. I felt that I was nothing but a shadow of a person, heavy and stagnant and the gesture of self-destruction felt like it would at least be… something.

And of course it would be an escape. Perhaps the worst thing about chronic illness, worse than the humiliation, the pain, the isolation… the worst thing I remember is the boredom. The days that melted into each other, stretching endless and tedious behind and in front. Sometimes I fish about in my head for memories of those years and only get feelings that make me uncomfortable and vague memories of bedsheets and shitty TV shows. I know that this wasn’t the entire truth of those times because as an adult, I see the privileges from my childhood but I believe that being ill for so long made me perceive everything through a very deep depression.

Bored and caged animals will pluck their feathers out or chew at their flesh. I have an intimate familiarity with that impulse and for some years I was the cliché of teenage angst, late at night when the frustration, self-loathing or tedium became unbearable, I would take to my arms and legs with a kitchen knife, slowly slicing shallow red lines into my flesh. It is not in accord with popular opinion for me to say this, but it truly felt as if that behaviour curbed my violent impulses and I recall the ringing in my ears and the nauseous calm I felt as I watched bloody lines appear. It was like white noise, it blocked things out and focused my attention. Cutting is seen as an unhealthy behaviour and certainly mine was a symptom of a great unhappiness, however I think that channelling the violent emotions I was feeling into something that had no long term negative effects on my physicality was actually… helpful. I am not necessarily defending the behaviour, though I do believe it kept me from something more drastic.

I haven’t cut myself in years, having learnt more “constructive” and “adult” ways of dealing with my emotions. However, in 2014, when I turned 30, I was thinking a lot about how I wanted to be dead. My (then undiagnosed) Thoracic Outlet Syndrome was at its worst, I was in constant pain, unable to sleep, dependent on my partner financially and unable to do any of the things that made me feel valuable, excited, alive. It had been over four years since I first had problems with my arms and it seemed to only be getting worse. My future and prospects felt bleak, once again I felt like a burden, once again I was the thing I had been working so hard not to be, once again I was nothing.

It felt like a Chinese finger trap, the harder I struggled, the tighter the grip it had around me. I was bored, frustrated and just so sick of trying. And now I had access to the Internet, I thought about how easy it might be to just research the most painless, simple methods of self-annihilation. I was an adult now, maybe this time I had the willpower to follow through and…

And I thought of Wes. And I knew how I might ruin his life if I did this. And so, though it was incredibly hard to do so, I told him how I was feeling and he implored me to keep trying, he promised he would help. In honesty, I half hated him for it at the time, half hated him for the way his love meant I had to keep trying when it felt so hard and I was so tired. So completely spent.

But I kept trying. In honesty it was for Wes at first and not for me, but slowly things started to improve during 2015. I found mindfulness meditation which has helped me be gentler with myself and better tolerate the things I hadn’t control over, I found my cat, I did some volunteer work, I started working on a web series, I started learning to sing. I got a diagnosis. I fell even more deeply in love with Wes and back in love with someone else who I never thought I’d see again.

So this year, 2016, has been kind of incredible so far. The diagnosis of TOS has transformed my self-perceptions and given me a sense that my future is no longer hopeless. I have an abundance of love. And for the first two weeks of this month, we were filming the web series that I first conceived of in 2014 when I was thinking about how I would like to be dead. Filming was the most scary, exhausting, stressful thing I have possibly ever done and I was so ecstatically happy. I rediscovered a self that in 2014, I thought I had permanently lost and I felt like the poster child for an “It Gets Better” type project. I am struggling to express what those two weeks meant to me but there were so many times when I was thinking to myself “Remember this. Remember that if you had given up, you would not have gotten to do this.” While feeling, truly feeling, that it was all going to be better from here.

Two days after we finished filming, my body seized up with pain from computer work and I was blindsided by the sudden onset of old, morbid thoughts. I was devastated, my body felt like a trap again and the joy I’d been feeling felt like a sick lie. For just a little while, I resented how amazing I had been feeling for how hard I was now crashing. But the people I love helped pull my head out of that ugly place and though I am now feeling a little shook up, vulnerable and prone to moments of sorrow, I do believe things are improving.

It’s just… it’s not a straight line pointing upwards for the rest of my life. My body will always cause issues, horrible things will inevitably happen and there will probably always be many things I am unable to do. I may always be taunted, in my vulnerable moments, by the self I could have been if only my body hasn’t failed me so many times and I’ve now had to face the unpleasant reality that suicidal thoughts may not be something a person can permanently escape. This might be something I have to battle again because that is what life has to do, life has to fight.

But if/when these morbid thoughts reawaken in my head, here is what I will tell myself: Despite how seductive it can be, suicide is not the opposite of stagnation. Fight and be proud of yourself for doing so because life fights. And remember, when you wanted to die, you could never have known how amazing you’d feel when you moved to Melbourne, produced and starred in a stupid musical theatre comedy that would receive rave reviews, married your best friend in a pantomime unicorn outfit, roamed the streets of Berlin with a wonderful lover, lay on the side of the planet and stared into the stars with a man who makes you feel alive, spent two weeks in a studio filming the most ambitious project you’ve worked on up to this point, danced all night, played with your cat, painted for an hour without pain, baked a cake, learned to rap, laughed with your idiot friends… the list of good things far outweighs the negative. These things, these moments of joy and triumph are always worth it.

Always.

On an almost daily basis, I struggle with the feeling that I am nothing and it’s true. I am. We all are. Ultimately, we will all be helpless in the face of our own mortality, it’s just that people who have their body fail when they are young have to face that reality earlier than some. In the smallest fraction of time, everything we know will cease to exist. In the interim, I am taking the resources I have and making some fucking spectacular moments with them, like fireworks exploding in the cold and dark night sky.

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.