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.

Heavy

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

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

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

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

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

Fuck.

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

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

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

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

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

Shame is Boring

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

But I am proud of this video particularly.

Cities

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

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.