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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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.

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.

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.

Outback

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I need to find a way to capture some of this feeling before it dissolves in the atmosphere of the city.

It’s flat, the outback. It reminds me of the way the world felt when I was a kid, yanno, big. Big like when you stand outside at night and stare into the universe. That awestruck thing of you being so small, so insignificant, that liberating thing of some getting some goddamn perspective. Oh hey ego, shut up a tic and look at this cool shit, hey?

Over the anniversary of my 10th year living in Australia, we explored Lake Mungo, the ghost of a lake that once was. Now a dry and flat expanse covered in alien vegetation, 50, 000 years ago this place was freshwater mussels, giant marsupials and people. Some of their bones remain around the edges of the extinct lake and our guitar toting tour guide showed us ancient fire pits, fossilised fish scales, preserved footprints and freshwater mussel shells that looked as if they had been deposited on the ground just yesterday. Actually, the mussel shells were perhaps one of the most striking things – the fact that they did not look old gave me a strange sense of vertigo, a connection with the past and a palpable understanding of how recently that lake existed in the history of things.

For centuries the fossils and things have been preserved in a museum of mud and sand but now the wind is uncovering them and slowly they erode and disintegrate, blending with the dust and sand. Poetry like that is the kind of shit that puts a lump in your throat. Mortality, ephemerality, it makes you feel lonely and sad but in a good way, a poignant way. Isn’t everything just so fucking beautiful when you remember that it’s all temporary?

It’s dry, the outback. To an untrained eye it might seem hostile to life but in fact the biodiversity is astounding and you see things that are so alien and specifically evolved to the ecologies which they inhabit. Brilliantly coloured parrots screeching in voices that somehow remind me of Fran Drescher, lumpy turd shaped lizards with giant mouths, Emus that look like dinosaurs and a run like terrified but athletic nerds, beetles with markings that look tribal and might get them entangled in an online argument about cultural appropriation, weird fungus that is the texture of a pavlova filled with black nightmare weirdness and flowers with petals that feel like dry straw.

You have to stop though, you have to stop and stand still and pay attention. That’s a good rule of thumb in general when it comes to the natural world, remembering that it doesn’t exist to entertain you. The animals and plants have their own shit to do and if you take some time to tune into what that shit might be, you realise just how little you know, just how many worlds exist right before your mostly blind and ignorant eyes. It’s humbling.

“Humble” seems like an old fashioned word doesn’t it? I’d love to see a renaissance of humbleness. Can somebody bring it back into fashion? I don’t mean humble as in subservient or lacking in pride. I mean… Remembering how little any one person can ever truly know, remembering there is always more to learn. Always.

It’s bright, the outback. This part will go down as one of the great memories of my life. The part where we got out of the car and clambered up white sand dunes. When I reached the top of my first dune, I let out an involuntary and childish squeal of excitement and I started to run along it. I’m grateful for the times when I forget to be self-consciousness about what a giant dork I am.

I’ve never been on sand dunes before, not proper ones like this. They were a thing of myths, of the books I read in my childhood. It is utterly thrilling to be somewhere that just looks and feels so different from anything familiar and I swear, my heart raced with excitement as I bound down the side of the first dune in giant gravity propelled leaps! I ran through the flat valley between the dunes then up another, down another, up again. I felt a manic, brilliant joy.

When I paused for my breath to catch up on me, I realised that the white expanse seemed to be spinning and flickering just a little, as if my brain couldn’t quite take the exertion, the heat or the brightness of the sun reflecting with such intensity on the white surface. I wondered if I was going to faint and the idea seemed so hilariously pathetic that I burst into laughter. Then I stopped to breathe in the place and listen to the absence of traffic, the wind, bugs and the occasional bird or rare other tourist.

I watched him in the distance, my travel companion who is one of the great loves of my life and who has a thirst for adventure and novelty that feeds and ignites my own. I knew, through the excited grins we had shared all day, that he was finding this as magical as I, albeit in his own way. He looked up into the sky and I followed his gaze, it was a bird. The internet tells me it was probably a nankeen kestrel.

It hovered and wove silently through the sky and as it came towards me, that feeling of awe I had been experiencing all day seemed to reach a climactic peak. As it flew directly above me, I literally fell to my knees and watched it pass in front of the sun, an act which caused its feathers and much of its body to glow. Holy. Fuck.

I have a voice memo on my phone from after that moment. My voice is faint, trembling. You can barely hear it over the wind but I wanted to transcribe my words, rambling, unaltered.

“Today I saw the sun shining through a hawk while sitting on a sand dune… and I’m so glad I lived for this. I wanted to take a photo or a video for the memory and for writing about it but I thought that would be really inferior. And I thought about the shame I feel for taking photos instead of living in the moment. 
But then I thought about how we’ve always told stories, the thing that makes us human is telling stories about the things we do, that’s why we take photos of everything and try to record things… that’s something really special about us… that we… we tell each other stories about what we’ve done, what we’ve eaten, where we’ve been. It’s how we learn, it’s how we relate and I think we should tell all our stories. I don’t think there should be bad stories. I think we should tell stories about the most poignant moments in our lives, the moments when we run across sand dunes but also the time we shit our pants on the tram down Sydney Rd or the sex we had that was just so filthy or… the time we wanted to die.”

Exactly a week before I was running on the sand dunes, I wanted to die. The theme was one I had written of before, unhappiness with my health, sorrow about how significantly decreased my abilities are, chronic pain, lost potential, fears of things worsening, missing painting with the ever-present ache of lost love. I felt trapped, I had temporarily stopped seeing the colour in things. All I could see when I closed my eyes was a recent x-ray of my fucked up body and all the ways in which I cannot have the things I love.

Exactly a week afterwards, I sat in the dark where we had set up camp and though the suicidal inclinations had passed, I was still feeling tenuous. I decided to risk trusting this relatively new love of mine with the story of my sadness and he gave me the generous gift of listening and then just holding me for a little bit. Something lifted after that, it is such a fundamentally human need to have our sorrow witnessed. And our joy. One of the most meaningful things you can give another person is to listen to them when they tell you how they feel. I am tremendously grateful for the people who have loved and listened to me and I hope I do the same for them.

The next day, I was watching the sun shining through a hawk on a sand dune. Then I stood up and went to my love, we embraced and showed one another various treasures we had discovered – old fashioned glass fragments, dead bugs, bones. We both went wandering in separate directions again and I played a game with myself where I walked along the flat sand with my eyes closed until eventually I reached a dune that meant I was now climbing upwards with eyes still closed. Suddenly my foot touched air and, gasping in surprise, I fell onto my arse, I had reached the top of the dune and had fallen onto the other side of it. I laughed, filled with joy over how effective such a simple game had been at delighting me in this magical place.

I made a second voice memo.

“I can’t remember the last time I was this happy. It’s that thing… that thing where you have to tell the stories you don’t want to tell. You have to accept your vulnerabilities you have to (the wind gets too loud here and my voice is too faint to decipher for a moment) … somehow it just frees you up. It frees you up to feel good. It’s that Brené Brown thing about vulnerability it’s…oh my God I just found a little jawbone!”

A week ago I wanted to die. A week after that, I visited a place so special that it unlocked passions for the natural world which had lain relatively dormant within me since childhood. When we got back to Melbourne, my mood dropped and I cried when I walked into my house. But it was nothing dramatic, I’m feeling a lot stronger and my cat has been demanding cuddles which always helps me keep it real, yo.

It’s important to remember that the pain is real but so is the joy. It is so important to be reminded of how incredible the world is and I will hold onto that for dear life.

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