Daring to Love

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My love,

I’ve been thinking of you while I navigate the world with a broken heart.

We are phenomena – a combination of processes, electrical signals and chemical reactions combined into conscious creatures in a constant state of negotiation with the reality we inhabit utilising our limited tools of perception. We are animals who name ourselves. We are weird, scared, lonely, lovely little miracles.

Our ancient drives are self-reproduction as a battle cry against mortality which manifests as self-obsession and a desire for confirmation of our own existence. And so we seek love with the hopes that it will mean permanence and protection from the only constant which is change. But love, to our horror, has the very opposite effect of comforting us because love challenges us. The process of opening to another changes us. Our consciousness, our habits of thought, the phenomena of “us” becomes permanently altered by the phenomena of “them”. It’s like the act of intimate contact is a merging of atoms and electricity so that parts of them float within us for the rest of our short and hard and beautiful lives.

Intimacy is a coalescence, a vulnerability, an invitation of other into self. It is an act of enthusiastic and terrifying consent – “I love you, please come inside” and once we let someone inside, the shape of us, whatever that is, is forever altered. Their colours and textures permanently tint and transform our own in ways that ensnare us in thrilled awe.

You changed me and you will remain inside me until this thing I call myself falls apart.

Contact between self and other is never easy. In our desperation for comfort and stability in a reality where the only truth – impermanence – terrifies us, we desperately cling to our fixed ideas, our fixed identities, because this comforts us. Love, that abject state of gaping wide open, confronts us to the core.

Loving you scared me like the realisation of the vastness of space and the finality of death.

When two conscious beings collide, the friction, the tension of phenomena meeting phenomena is alchemical, a birthing of alien landscapes sparkling with crystalline creations, populated with strange new flora and fauna and marred occasionally with sites where the act of impact has become violent. Blackened landscapes caused by natural disasters, forest fires and comet collisions.

When two phenomena learn to co-exist and navigate their collisions with grace, the blackened landscapes become places of rejuvenation and renewal, together you establish and nurture delicate new life forms in the landscape named “hurt” and the plant life is stories about regained trust and personal growth.

Loving you made me feel alive and brilliant and free, like the beauty of the desert sand dunes we ran across, like the stars we looked sideways into, like the filthy way that we fucked among the flies. It painted new colours and patterns on my skin, it made me beautiful. When you whispered “I’ve got you, babe” I fell into those words with the grateful, unbelievable softness of trust.

But then there are the less natural disasters. The nuclear reactions. And a nuclear reaction is different. This is when consciousness becomes aggravated at the discomfort of difference and begins to act in violent defensiveness, sending out antibodies to destroy the other within its system using whatever means necessary. Love’s immune system attacks itself and the self sickens, the landscape becomes toxic. This is neurosis, violence and abuse and it is destructive, it is dangerous.

Without maintenance and care, what rapidly results is a landscape devastated beyond two human animal’s capacities to repair. This landscape becomes expansive and blackened, the poison begins to intrude even on the beautiful spaces and the life within it becomes decrepit. This is a terrible place for an animal to find itself in and so sometimes, in a desperate act of self-preservation, a creature must tear itself from its entanglement from another.

Loving you broke my heart too many times. Loving you nearly broke me. I wish you’d accepted just how unhealthy, how cruel, how violent your words, unquestioned thoughts, assumptions and habits were. I wish you’d valued softness over hardness, kindness over rightness, maybe then we’d have stood a chance, maybe then I could have mustered the bravery to try and trust you again… but it’s too late now. Our time has passed into the past and I’m slowly letting go of my anger and sorrow and regret.

Slowly. Sometimes I still burn with a violent fury at you for ever making me feel so small. Sometimes it still really hurts and yes, I blame you for things falling apart. But I’m letting go of that hurt. Slowly.

When a separation happens, a rift, a tearing apart, often suddenly and violently… it leaves us heartbroken. Heartbreak is… it is the feeling of your skin and insides dragging behind you in tendrils that float and ache and hopelessly reach for the other being they had attached themselves to who is no longer there. Heartbreak is a howl of despair.

I’m sorry I left, my love. I will be forever sorry about that because I thought, I truly thought… I thought we would watch one another grow old. But I’ve had to let go of that dream. Nothing has ever been harder. Nothing.

For a while this violent disentanglement leaves us broken and shut down, for some time we close off and vow never to open ourselves up ever again. We become a small, bitter, angry, sad, closed consciousness who doubles down on the defensive behaviours that cause our perceptions to narrow, our connections with the world to vanish and so we become deeply lonely creatures.

But my love, it doesn’t have to be that way. If we open to our pain, our hurt, our deep and agonising vulnerability, we realise that though we have lost the thing we had, we had it once and now it is forever entangled within the phenomena of the thing that we call ourselves. And we can access that and we can carry it into the future to make our world more beautiful.

It will never be the same because nothing in the history of existence ever is. But each thing that is now comes from the thing that was before. And so… you will forever be part of the big story I tell myself about myself. The good parts and the bad, I’ll wear them both, I’ll honour my love and my broken heart and I hope you will too.

Love is the stuff of braveness and openness and vulnerability and metamorphosis. Joy and pain are inseparable truths. The other truth is change. But when I loved you, I loved you forever.

My heart is broken but it is also shifting into new spaces and shapes. And as I move through my small life and realise that even with you gone, you have left your mark, I am utterly grateful for the collision of us because I love the textures and tones of what I am now. As dangerous as you were for me… you were magical too.

You can never have something back once it has passed. But the fact of it ever existing is a miracle and that is the most beautiful and comforting truth I know.

Thank you for daring to love me. We were so brave to try.

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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.

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.

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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