My Website


Hey guess what? Over the last couple of months, I’ve been able to slowly update my website, after it lying dormant since 2012, as I slowly get somewhat more able-bodied post-surgery. I’m not finished yet, there’s a couple of things yet to come but it’s mostly there! I’ve tried to combine many facets of myself there and this includes the overlaps between art, comedy and smut. So it’s VERY much not safe for work, there’s a LOT of nudity and sexually themed art, you have been warned.

It is such a damn good feeling to be improving enough that I can actually start building my profile as an artist again. I have to work very slowly but I’m able to do it and so putting together this website has been so good for my goddamn heart.

Anyway, blah blah blah, check out my stuff at if you’re so inclined and you can also follow me on Instagram. Viewable on phones but significantly better on a desktop.


babe I’ve got you

(Last year, the wind spraying my face with water from the cold pacific ocean and inspired by one of my favourite songs, Asido by Purity Ring, I wrote a song in my head which is something I often do, even though I don’t know how to make music and have no particular talent for it. Still, I thought I’d share the lyrics to this one because this was the closest I ever came to articulating the specificities of my own experiences of the private pain of broken trust. If anyone ever wanted to turn this into a proper song, they’d be so very welcome to.)


I paused at the step of your door
just like so many times before
so I could hear you playing your guitar
your voice was maple syrup and cigar

you sung words of pure emotion
words of love words of devotion

I won’t let you down
I won’t let you fall

and then you kissed my mouth
and then you pushed me down

and you fucked me like your whore because I was

and when I dropped you held me near
and then you whispered in my ear

babe I love you
babe I need you
babe I’ve got you

I won’t let you down
I won’t let you fall

and I listened to those words, complete belief
and my heart it opened wide,
such sweet relief

it broke down my defences and resistance

but then the storms so cold they came,
hard wind dark sky and endless rain
it followed me around painful persistence

and your eyes grew dark with loathing and hate
and your brutal words shot lethal and straight
with your disgust your cruelty and your distance

you called me pathetic and bad
a whiny piece of shit you said
as I hovered on the edge of my existence

and then you kissed my mouth
and then you pushed me down
and fucked me like your whore you thought I was

and when I cried you held me near
and then you whispered in my ear

babe I love you
babe I need you
babe I’ve got you

I won’t let you down
I won’t let you fall

babe I’ve got you

A lazy form of grief


I’ve been listening to Tara Brach’s incredible three part series of talks “Freedom From Othering: Undoing the Myths that Imprison Us”. In part 2, she quotes a line from a Nicole Kidman movie that made me feel like I was being punched in the chest.

“Vengeance is a lazy form of grief.”

Brach suggested that the reasons we might decide a person is wrong or bad is because it is a defensive stance that masks deeper feelings of vulnerability, of hurt. In fact, I already knew that because in recent times, I had to cultivate an artificial sort of hatred within myself towards two people I loved. I cultivated this hate in order to create the sort of boundaries, safety and distance that I needed from those people who I’d loved deeply but who were no longer emotionally safe for me during the biggest crisis point in my life. Since then, I have experienced a childish frustration within myself because I did not believe they were behaving in ways that were right, or kind, or good. And the honest truth is that these stories about their bad, hurtful behaviour were playing in my head on repeat. No matter how much effort I made to process, to meditate on forgiveness, on compassion, no matter what magic rituals I undertook to move on and let go… in any moment when my emotions were just a little shaky, I would be right back to ruminating. It felt like my brain was stuck and I was sick and bored of these emotions. I am sick and bored of those emotions.

In Brach’s talk, we were invited to investigate our feelings towards a person who we had placed in our mind as a “bad other” and the reasons we might do that. We were told to look beyond the surface of our anger and disgust with them to the soft place, the truth of our feelings towards them. This wasn’t difficult at all for me, my carefully constructed hate was like the thinnest membrane spread protectively across something deep, almost unfathomably deep.

When you strip away the storylines, all that is left is the truth of our hearts, an animal, vulnerable, child’s need for love and as I pushed through that membrane and into the murky depths of things that hurt, a voice within me cried:

“Why did you hurt me? I thought that you loved me! Why? I thought you loved me! Why?”

I collapsed on the floor where, for a few minutes, I allowed myself an ugly, loud, childish sobbing. I allowed myself to whisper “why?” over and over in the pitiful, superstitious hope for an answer I’d never receive. Then that thing happened that I learned to do last year where I just thought “Enough.” And just… turned the emotion off.

I don’t like that. I don’t this new skill, this ability to go numb and disconnect from my emotions. One of the biggest reasons that I realised I needed to leave him was because, in order to be around him, I was having to switch off my emotions for fear of his disgust. And then I just kept those emotions switched off in order to just… cope. Survive. Live. But as Brene Brown says, if you want to do more than just survive, if you want to thrive and live wholeheartedly, you cannot selectively numb because when you numb your capacity for pain, you also numb your capacity for joy.

I believe this to the marrow of my bone and so I continually strive to allow myself my emotions. Not to get caught up in the stream of them, but to simply honour their transient presence and allow them to flow through me. And so I’ve been turning things back on lately. Processing. Letting myself feel through what I need to feel through. It’s frustrating work, I am tired of my heartbreak and bored of the ways my brain still obsesses over hurt that happened many months ago. But I get it, I get that it won’t go away through sheer force of will, instead I need to grow with and through it. I need to honour my heartbreak and past experiences, even as I continue to move forward.

I loved him so much. I loved her so much. Life is long, hurt happens. I do feel myself moving on but… but when I stop numbing, I am faced with the truth; I still love him. I still love her. So much. Neither are in my life anymore and the part of me that clings, that wants everything to stay the same, that struggles with loss and the ugly sadness of life… that part wants to hear their laughter and to wrap my arms around them and feel the glow of the love we once shared. I miss the way her eyes went wide with the wonder of the world. And fuck… I miss the way he would whisper “you’re the love of my life” in my ear. I miss his whisper with an intense sorrow that doesn’t seem to lessen as time goes by.

So I guess that once someone occupies my heart, they will always be there. And perhaps I will always see things that make me think of them and bring the taste of tears into the back of my throat. But when I let myself feel those things… they pass through me. They don’t pass permanently but they do not dominate with their original intensity. And allowing myself to connect to them, as painful as they are, is also allowing me to connect more deeply to every other intense sort of emotion.

I suppose this is what acceptance is. I am lonely. I am loved. I am heartbroken. I am joyful. I am slowly building a collection of scars both tangible and intangible and they are evidence of a life lived bravely and fully.

I had hoped to hate those who I felt wounded by because that strategy seemed safe and easy. But it doesn’t work for me. I allow myself my anger, yes and I know my boundaries, what behaviours I will and will not accept from the people I keep close to me… but just because they are no longer in my life, it doesn’t mean my heart has closed. My beautiful, broken, hurting, happy heart.

The harder task is wishing them joy. My sense of hurt still runs deep enough that a part of me wants them to suffer because a part of me feels they never learned any lesson from the hurt they “caused” me. That child crying “why?” and wanting the world to be simple and just. But I know everything is more complex than that and so when I go even deeper than my hurt, I can access a place where I genuinely wish them well. And I do. When I allow myself to accept just how much I still love them… I genuinely wish them well.

And that’s what I want. Love is hard work and anger is an important emotion to understand, honour and work with… but not hate. I reject hate. It’s just not for me. It’s lazy and ineffective. And so the process of moving forward isn’t a straight line but circuitous. And that’s just how it is and so that’s ok.

Good News

(This is cross-posted from my Instagram where I have been most active lately. It’s not a poetically written post but it contains happy news about my thoracic outlet syndrome and I think this blog needs a bit of that.)


Succinctness will never be my talent but my health stuff is going amazingly well and so I wanted to gush about that.

Before I got surgery for my thoracic outlet syndrome, I was feeling trapped in my body. After years of incorrect diagnoses, shitty experiences within the medical system and my disability and pain increasing with every year, I was feeling utterly alone, utterly dejected.

Four months after surgery (where the surgeons found I had the worst compression they had seen) and I’m actually starting to see real, tangible progress from the physiotherapy I’m doing. I’ve started lifting a half kilo weight and more amazing than that, two months ago I started doing a gentle rowing motion with a very gentle theraband, this was a HUGE deal because before I had surgery, even after a year of physiotherapy, I couldn’t do the row without pain. I simply wasn’t able to do it. But I’ve been doing it for two months now and a couple of weeks ago, I graduated to a tougher theraband, at which point I got tearful in front of my physiotherapist. She apologised for how long and slow this process is to which I responded “no, the thing you have to understand is to me, this is nothing short of a miracle. Before surgery, the idea of being able to do this exercise felt like dreaming too big” and it did… it seemed as out of reach as the idea of me walking on Mars. But it’s happening, twice a day I do twenty rows and it’s hard, my body has a lot of shit that needs correction… but it’s happening! It’s really happening! I’m improving!

Yesterday I drove almost two hours and I was only in mild pain afterwards. Today, I painted for almost three hours and though that was definitely pushing it too far and I need to not make that a habit just yet, for the first time in perhaps seven years, I wasn’t a broken wreck afterwards.


Here’s a portrait I did of an Instagram friend in 3 hours. Ok, I was actually pretty sore the next day but I’m still excited about being able to paint for longer than I could before surgery

I will always have thoracic outlet syndrome, I will always need to keep on top of my physio and practice management strategies. But that’s ok because for the first time in such a long time, my hard work and discipline pays off! Do you know how much easier it is to keep pushing onwards when your hard work gets results? Do you know how much easier it is to look after your body when it isn’t in pain all the time? Do you know how much easier it is to get through the day when you can take a quick drive to the shops without it hurting? My brain feels so much clearer and my heart is opening with the joy of it all.

I am acutely aware of how lucky I am that the surgery for this poorly understood and rare condition actually worked for me. I am, in honesty, still in shock and every day, when I realise how much easier life is for the able bodied, my heart goes out to everyone who struggles against impossible, invisible enemies, myself included. I never believed I could be this lucky. Perhaps in a year’s time, I’ll be using a rowing machine at the gym. Perhaps I’ll be painting every day. But even now… I’m better than I had thought I could possible be when I lost every shred of hope last year. I am so lucky, I am so incredibly lucky.

(P.S this post is public because when I desperately needed TOS success stories, I couldn’t find any. Down the track I would like to make a website about it or something but currently I’m just focusing on my own healing. My second surgery is booked for April 10, I am still pretty nervous because it’s major surgery but I am not terrified like I was the first time.)

Suicide and Love

(Trigger warning for discussion of suicide and disability, this is actually a positive post but it’s still very intensely emotional stuff.)

Earlier this year, I stood on the edge of a train platform in New York City and nearly jumped. I had been struggling with suicidal ideation for the last two years, my chronic pain had pushed my brain into a clinical depression that was almost relentless and I had experienced several major mental breakdowns, the accumulation of which, coupled with a traumatic event, had left me feeling utterly useless and hopeless and so I stood on a train platform and contemplated jumping. In fact, the only thing that stopped me was the thought of Wes, one of my partners, having to pay a fortune to have my mangled body shipped back home. Sometimes I am still blindsided by the horror, the sickening realisation of what I nearly did.

Lately, my life is really incredible. My arm has been slowly improving and I’m getting back the things I thought I was losing forever, my ability to paint and write and drive and just… just live with some freedom of movement, without my body feeling like a cage that is shrinking smaller, smaller, smaller. I had lost all hope that I could ever be so lucky and so I feel my luck with an intense gratitude and a deep, heartbroken sadness and compassion for everyone who is currently lost, and scared, and hurting and may never be as lucky as I am.

I am also intensely aware that I don’t want anyone to think my life is only better now because my arm is getting better and frankly, that isn’t true. My life actually started getting better before the surgery, it started getting better on the night when, back from New York and in an abject, miserable, broken state, body trembling and eyes red from crying for days, I screamed at Wes to help me, to please help me, please why wouldn’t anyone help me.

He called suicide hotlines and they were not helpful (this is not a criticism of that resource, it’s just the advice that was offered was… ok it wasn’t useful so maybe this is a criticism?) and so instead he called my mother and with her advice and the help of some of my friends and lovers, Wes organised for me to go on suicide watch. For the next several weeks, I had somebody by my side every day and through that process, I realised how loved, how very loved I was. I realised how important love and community and kindness is and my life started getting better.

Then I started meditating, and reading books on shame and daring greatly and grief and finding Buddhism, and practising self-compassion and loving kindness and learning from the wisdom of an ancient philosophy that someone called “positive nihilism” which suits me well as it’s is all about love, connectedness and how to navigate the facts that suffering and change are unavoidable truths.

And I went on SNRI antidepressants as we came to realise that though my reasons for feeling unhappy were valid, nonetheless my health had pushed me into a clinical depression and my brain needed some assistance climbing out of that. And I was already getting therapy and that helped a little though not as much as the support of my friends and family because the mental health support system is overstretched and besides I was tired of the dehumanising process of being a problem to be fixed, that was in fact part of what was hurting me so badly.

And I went through loss, I had two important relationships fall apart at the exact same time and felt the ache and hurt and heartbreak and confusion that comes from conflict with those you love and then I practised self-compassion and honouring my heartbreak and sadness and letting myself move through all the stages of grief and anger and loss and letting go. I am still moving through those but the process of doing it with a great deal of compassion for myself is strengthening me further as heartbreak doesn’t have to harden me or destroy me, but instead can soften me to the pain of others. And as my compassion grew and therefore my sense of connectedness to others, my life started getting better.

And I started letting go of shame. I was shaming myself a little less for not earning money and struggling with mental health problems and I was valuing myself a little more for the contributions I was making in the world. And I realised my principals are entirely about kindness and that made me feel strengthened and driven. I decided I was going to be ferociously kind and I started to get more in touch with my anger (with unfortunate mishaps along the way because I’m still working through trauma and anger and it’s messy stuff) and I started to get more in touch with my pain. And my life started getting better.

Earlier this year, I stood on the edge of a train platform in New York City and nearly jumped. Sometimes I am still blindsided by the horror, the sickening realisation of what I nearly did. I saw oblivion and what I went through had the trauma of a near death experience. And now I look back, I can see that during that time, I felt utterly alone, utterly worthless and utterly helpless because I thought that my disability made me unworthy and meant I could not live a full life.

So though my life is definitely made -significantly- easier because of the surgery and the fact that I’m one of the lucky ones who might be able to get better, I want to reject the toxic notion that the only reason my life is better now is because I am starting to become more abled bodied, more “normal”. Yes, it’s true, I’m happier because I’m seeing that I can start to follow my biggest dreams again. Yes, I’m happier because life is fucking easier. This is true. But it’s not the only truth and not the only possibly positive outcome.

Because it may not have been the case. It was entirely possible that the surgery wouldn’t work and the thing I realised, before I went under the knife, was that even if my body didn’t improve, I could still live a good, full, rich life, it’s just I’d have to work a whole lot harder than most people and I would need to surround myself with gentle people who would not resent me for the things I could not do or be. In fact, I’m still disabled it’s just… less than I was.

So I really want to say this with as much emphasis as I possibly can… if you know someone who loudly complains about their pain, please think twice before you shame them for “whinging” because you don’t know what it feels like to be inside their skin. If you know someone who is engaging in acts of self-harm and suicidal ideation, please don’t dismiss them or get angry at them for the state they are in. It’s so hard to look straight at pain, it’s so hard to look at people who are suffering because the sheer existential horror of it scares us and so we’d rather look away in fear and disgust. But I need to say this with as much emphasis as I possibly can, the only reason that I am alive today is because of the people who didn’t walk away, didn’t angrily chastise me, who instead sat with me through my pain and reminded me that I could have joy. The only reason I am alive today is because of the people I gave love to and who loved me in return.

Let me say that again. The only reason that I am alive today is because of the people who didn’t walk away, didn’t angrily chastise me, who instead sat with me through my pain and reminded me that I could have joy. The only reason I am alive today is because of the people I gave love to and who loved me in return.

Disabled people and the chronically ill can have amazing lives, do amazing things, make the world richer, kinder, wiser. But so many of our struggles are invisible and so much greater than you may perhaps realise so please, as much as you can, strive to be patient and generous and kind and to realise that though someone might have more struggles than you, it doesn’t mean they can’t have brilliant, beautiful, valuable lives. Please, I implore you, behold the pain of others and of yourself with gentleness and kindness, not pity and anger.

My life started getting better when I started being kind to myself and surrounding myself in kindness. That was the thing that saved my life and made me want to stick around in this world for as long as I possibly can, love. Just love.

Daring to Love


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.

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.