Pain is Not a Punishment

My psychologist says that my pain is a trigger for me. He’s right. It happens when my arms and neck burn for weeks with neuropathic pain like hot needle pricks bubbling and fizzing ceaseless and seizing up my muscles so my hands grow tight and numb. This is when I start the stories about blame and shame and name myself the number one culprit the cause for everything that ever goes wrong.

I overdid it underdid it tried too hard tried too little didn’t try quite the right way at quite the right time. I’ve blown it broke it wasted the chance I was given watch as all that money and love and patience you gave me goes gurgling down the drain and you realise that the ones who said nasty things about me were right all along and they were the only ones who spoke the truth. I’m a piece of shit. Was is always will be. Shit.

“Pain is not a punishment, pleasure is not a reward” I repeat the words of Pema Chodrom in my head as I turn with hope to self-compassion and the kindness I know I need. But the voice that feels more honest tells me if only I had more self-discipline, if only I were a better version of myself, stronger, calmer, smarter. Get your shit together piece of shit.

Pain is not a punishment. Pleasure is not a reward. Pain is not a punishment. Pleasure is not a reward.

This body and brain are the body and brain I’ve been given. They have no inherent value, they simply are. These are my resources. I must work gently with them. I must remember that below the anger, self-blame-loathing-hatred-shame lies grief and even deeper than that is a calm sort of acceptance of the nature of reality. All that all this is is this right now. Tomorrow won’t be the same. It’s not even the same in my head since I first started writing this.

I’m not a piece of shit. I’m flawed and brave and beautiful and trying.

Pain is not a punishment, pleasure is not a reward.

I’ll repeat it until I believe it.

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Lost Time

I’ve been trying to make up for lost time, haven’t I? I’ve been trying to play catch up in a race that is rigged by forces beyond my control and perhaps exists only in my head. A competition between myself and imaginary rivals with doubters and detractors watching from the sidelines. “I told you so” I cry triumphantly as I flip them the bird and take what’s mine. What is mine? The friends I never had in childhood? The high school I never graduated? The accolades I was never awarded? The bragging rights I never gave my parents? The income I never earned? The paintings I never painted?

Now that the surgeries where they cut muscles and removed bones were successful, I paint joyously and gratefully, I never thought I could have this back. But the joy turns to intensity and the intensity turns to anxiety. I paint furiously, forgetting I am still a cripple and pushing my body beyond its current capacity. I retreat guiltily, depressively as my body responds in pain and seized muscles. I fall into old habits of beating myself up for my failures in self-discipline and lack of wisdom and the inability to indulge my wild passion in more restrained measures.

I panic and sleep too much and eat too much sugar and ice cream and wonder how I’ll ever go Vegan and why the hell haven’t I managed to make myself meditate lately when I know it helps and why haven’t I gone for a walk and why haven’t I saved the Great Barrier Reef and now that I no longer have my disability as an excuse, what if I’m still useless, still nothing?

But my disability was never an excuse, simply an explanation and I’ve never been useless, never been nothing. I drag myself to a group meditation and spend the whole time feeling like I might start screaming from the panic attack I am silently experiencing. Yet, the facilitator speaks of compassion to our own emotions and of sitting with a gentle kindness with ourselves and though no words particularly stick with me this time, I find myself calmer at the end of the session. I start to notice what’s going on.

What’s going on is that I’m scared. Scared as my body heals that I will fuck it up and ruin all the hard work and money that has been invested into me. Scared as my body heals that maybe it’s too late to make a something of myself. Scared as my body heals that I will have nothing to offer. Scared as my body heals that I will lose the hard earned wisdom I gained from my chronic pain and disability. Scared as my body heals that I will hit a wall and still be disabled and lose the patient compassion I have had from loved ones.

It’s useful to put words to those fears because I can challenge them and realise that what they are about is that my life is in transition. A shift from one sort of existence to another but not a miracle cure sort of shift, rather a slow and ongoing changing without a knowledge of what the end destination might look like. Only now I have hope. And I guess maybe that’s what scares me most… I never want to lose hope again.

And so with these realisations, I hold myself in compassion because I’ve had these fears before, the first time I started to recover from a chronic health condition, only to fall into another. I realise the thing I need currently is not to suddenly fill my life with achievements and become obsessively caught up in my identity as an artist and the ways in which that can make me feel valuable and lovable but instead to remember the value of meditation, loving kindness, gentle compassion, human connection and a returned focus on self-care both physical and psychological.

This is not to say I am de-prioritising my artist practice, it is my passion and always will be but I need to bring these other aspects back into focus because I still have this disability and need to find sustainable ways to explore and work with my shifting capacities. I need to do this gently, kindly and I need to forgive myself when I stumble and struggle. This is better than before the surgery and for that I am grateful but this isn’t suddenly easy and I need to remember that and be kind.

a little less

(Note: This was written for a desktop and formats badly on a mobile phone.)

Maybe I could try a little harder to be a little less
suck in that gut pin up that skin oil those surgery scars but
the makeup can’t conceal the way recent trauma aged me
and I can’t always avoid eye-contact

What I could just do is speak a little softer
less opinions whining contradictions and fuck shit cunt words
the problem’s that the stuff piles up under my tongue then
spews out sudden dishevelled tangles of my truths

Perhaps I should take my clothes off less often
stop the cock sucking pussy licking arse bruising and forgetting
who I’ve fucked blurred boundaries are my comfort zones the
bearable lightness of being spread wide open

It could be that I’m tacky for loving in multiples
spreading my too much too thin too many partners a gluttonous
abundance needy greedy helpless I just can’t shut love up by
covering my ears and screaming only one name

Maybe I could try a little harder to be a little less
or maybe I just need a bigger house.

First Feelings

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Just around this time last year, my husband Wes whisked me away in an aeroplane for an emergency holiday in Bali. I say “emergency” because that is how it felt to him, digging deep into his tax return, he flew me to a place that was tropical and vibrant as a means of emotional resuscitation, a life-saving procedure. We were lucky to be in a privileged enough situation to be able to do so and I am lucky to be so loved.

Only a few months earlier, a different lover (Wes and I identify as polyamorous, that is to say we are in an open relationship where we both have multiple loves and yes thank you we’re very happy that way) let’s call him Pete, had flown me to holiday with him in New York where things between us had gone incredibly sour. Upon my return, I was diagnosed with a sort of post-traumatic syndrome and my therapist and my closest people were telling me that Pete was behaving in ways that were emotionally abusive. Combine that with the depression, chronic pain condition and suicidal ideation I had been struggling with for the last couple of years and you’ve got yourself a recipe for someone who doesn’t really want to exist anymore. Suicide was constantly on my mind, I had planned how and had come close one too many times. The light within me was flickering dangerously and Wes, who knew and loved me best, was terrified.

So he flew me to Bali and just as he had hoped, the change in the air and colour and the company of my beloved quickly had me waking up. I adore the tropics like no other place and the ugly beautiful intensity of Bali mirrored something within my own internal landscapes. I started to feel excitement again, particularly as we were to do a diving course which would have us realising one of my lifelong dreams of scuba-diving in coral reefs.

Except as I already knew too well, life doesn’t always go according to plan. On the first day of our diving instructions, an over-eager instructor gave us flawed lessons which caused us both to sustain inner-ear injuries which we only became aware of late in the day. That night, Wes and I sat in a restaurant overlooking palm trees, chickens and tourist resorts and realised we were not going to be able to complete our diving course.

Heart swamped by bitter disappointment, the vision of my green cocktail blurred with tears. I felt miserable and I felt stupid for feeling so miserable when here I was drinking a cocktail in the tropics, a vision of privilege and good fortune. I felt ashamed of myself for feeling so unhappy when our holiday had only just begun. Optimistically, Wes said “Hey, no need to be upset, we’ll still have a good holiday, you know?” and at those words, something inside me clicked and, emotionally, angrily I snapped “I know, ok? I know it’ll be a good holiday! I know we are lucky to be here and I know we will find other things to do but right now I’m really fucking disappointed because this is something I’ve always wanted to do and now it’s just another fucking broken dream, you know? Just another thing I can’t do to add to the giant list of things I can’t do! Can I just wallow in this misery for awhile? I’ll be okay but can I just fucking be upset for awhile?”

“You know what, you’re right. That’s fair. I’m upset too. This fucking sucks.” And so when we went back to our hostel, we wallowed. We ate junk food, drank beer and I cried in Wes’s arms. I cried giant, heaving sobs of bitter disappointment that were a little about the ear injury but much more about the broken dreams caused by my chronic pain condition and disability as well as the deep hurt I was feeling over the betrayal of trust and emotional violence enacted upon me within my relationship with Pete who I was still deeply in love with. I allowed myself to feel sorry for myself, really, truly sorry.

Wes held me and I bathed head to toe in the bitterness of my disappointment and misery and after only an hour or so of wallowing… I felt fine. Better than fine, I felt good. Better than good. And happily, we planned out the rest of our holiday, adjusting our plans, discussing possible new adventures. We then went on to have an incredible holiday, one that was full of exploring, eating, fucking, nature, beauty, art and healing. During that time, we read Buddhist books together and I discovered the philosophy which has helped me develop a deep compassion for myself and a capacity for coping with my struggles with greater equilibrium.

So I learnt something really important through that experience. I learnt to take my emotions seriously, to stop judging them and stifling them and instead to let myself feel them completely so that they might pass through me and shift and metamorphose into something else. My therapist spoke of that phenomena as the idea that we experience both primary emotions and secondary emotions. Primary emotions are the first emotions we have in response to the phenomena of our lives and those emotions are understandable, reasonable things to have. Secondary emotions, the emotions we have in response to our emotions, more often than not, those guys are cunts. In my experience, secondary emotions tend to be judgemental emotions, the guilt that says “I shouldn’t be feeling this, I’m stupid for feeling this.” Secondary emotions are perhaps useful in helping us keep some perspective on our emotional landscape. Maybe secondary emotions are like our conscience, but left unchecked, they’re the jerks that stop us from giving ourselves the compassion and mental space to actually process what we’re feeling.

Similar concepts are described in Buddhism. My friend, Chance, explains it well in her excellent writing here:

“There is a Buddhist parable (or koan) about “the second arrow”. In short, the parable says that if a person is shot with an arrow, there is no point shooting a second one. The teaching is that sometimes in life you will get hit with an arrow. But many of us then shoot one at ourselves in response.

Buddhist teacher Tara Brach uses this parable to explain the phenomenon of blame – the human tendency to react to painful events by blaming others, or blaming ourselves. I remember when I first heard this parable (not from Tara but another teacher, Gil Fronsdal), I was struck by the idea that we could separate feeling awful, burdened or weary from being angry with ourselves for feeling those things. Perhaps it would be easier if we could just feel them.

This is what often happens with depression: we feel like crap, and then feel ashamed of feeling like crap, partly because we see the impact of it on those who love us. Sometimes shame is useful, and there is room for looking for answers, but if you are already wounded, injuring yourself further doesn’t help. It makes it doubly hard to put the pieces back together.”

So when I experienced the disappointment of not being able to complete the diving course, my habitual pattern was to emotionally attack myself for feeling disappointed, to tell myself that emotion was self-indulgent. But this time, I allowed myself to indulge that emotion, I validated the reasons I was disappointed and gave myself the compassion and space to feel unhappy for awhile. Through the act of doing so, I was amazed to see how quickly the miserable feelings passed and how quickly I was able to go about the task of having an amazing holiday with my gorgeous husband.

When we returned home, I ended things with Pete via email because I realised that there was no reason I should have to endure another verbal sparring match with him, no reason I had to listen to another cruel word. It would still take me over six months to start taking seriously the depths of the hurt his emotional abuse had caused because of course his default position had always been that I was overreacting and playing victim. Gaslighting is like the externalisation of the second arrow – your abuser shoots you with the arrow of their initial violence and then the second arrow is their denial of their responsibility, their insistence that you, in fact, are the one to blame for their bad behaviour. Their stubborn belief that your recovery from their wounds is your responsibility alone. For a long time, I internalised that message and in fact I’ve only recently allowed myself to feel the deep rage and disgust I have towards him for his behaviour. That has been healing as for a long time, I denied myself my fury.

Several months after returning from Bali, I had my first surgery for my thoracic outlet syndrome, a scary prospect with no guarantees. After my surgery, the surgeon came to me and said that mine was the worst case that himself and his assistant surgeon had seen and, after thanking him for such incredibly validating news, I broke into tears while my mother and husband held me and cried with me. After many years of not being taken seriously by a great multitude of medical professionals who made me feel as if my struggles with my health were just me being a hysterical woman, or incompetent, or crazy or just overreacting to my pain, after so many years of essentially being gaslit by medical professionals, to discover tangible evidence of the reality of my experiences was profound. And healing.

I’ve always been an emotional person, as a child I was told by adults that I was too sensitive, and as an adult I have often been told the same thing. After the experience in Bali, after the experience with Pete and after the experience with my surgery, I resolved never to disregard or minimise my emotions again. Yes, it is true that I feel emotions with perhaps more intensity than many and it is important for me to regulate and manage my responses to them with self-awareness, however emotions are a type of intelligence and more often than not, a reasonable response to the circumstances of our lives. We do not have to be controlled by our emotions but nor do we have to deny them, our emotions are a fundamental aspect of our lived experience and they have a great deal of wisdom to impart to us.

From now on, I am determined to listen to my emotions. I am determined to sit with the truth and wisdom and beauty of them. I am determined to give myself the compassion I deserve when I struggle because life is goddamn hard sometimes. And I am determined to do the same for others. Contrary to the belief of some, becoming better acquainted with emotions does not weaken me, in fact I have never felt stronger, never felt more resilient.

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Watch the stars – we navigate points of light in the dark

My incredible friend Tawhanga wrote a beautiful piece here that I highly recommend reading. Tawhanga and I went to art school together, Waiariki Insitute of Technology in Aotearoa and Tawhanga is one of the people dearest to my heart and art. Here’s a quote that I almost gave a standing ovation, despite reading it alone in my pyjamas.

Although the transformative potential of art is understood within Western cultures, the often used scientific modes to practice and consider art overlook simple ways to engage life, making and thinking. There’s nothing wrong with science, but thinking details without feeling their impact blurs realities. With science and empiricism comes a barrier to emotion, and stasis cannot support the life of a womb-like space. For art to have potential then we need to do away with restrictive measures. Indigenous communities have knowledge that can free art and its power from institutional confines … art needs to release its ability to heal!

Do yourself a favour and read the entire article here. 

“I love you” words

How did we get here? Like you’re a stranger I always knew or actually I think I always imagined you but now you’re here and I can touch you and I keep thinking maybe I’m making you up but the details are so much more than my notions and daydreams and longings. I never thought you were real because you never think dreams are real and even when you believe them you never do. But I can touch you and you’re tangible, physical, beautiful.

My heart is racing and my body shakes sporadically from the adrenaline. Your hands are so much bigger than mine, your body is so much heavier and so you easily crush me under the weight of you and keep me still so still when sometimes you even stop my breath and it is solace and safety and you look into my eyes and our fear makes us glow all the brighter.

Freedom is an illusion because our time and physicality and capacity is limited so limited so finite. But don’t we just forget that in the moments that pass too quickly but are the most brilliant fireworks? Multichromatic paroxysms that make us gasp and our chests hurt and our tears mingle as our faces press together and we are afraid to be so vulnerable as to cry but, defiantly, rebelliously, we do. What sick fucker ever told us it was wrong to cry anyway? I want to lick up your tears, not to hide them but to adore them. I want to worship at the altar of your pain. I adore every aspect of your humanity.

Freedom is an illusion and yet the possibilities are so much greater than our poor, sweet, dear little brains can imagine when they are trapped in labyrinths and habits and well-trod pathways. It takes energy, bravery, compassion and comradery to break with tradition and roam in the wilderness. We hold hands and offer comforting “I love you” words as a means of sustenance and strength. We fuck and talk and talk and fuck until sleep and other practical matters such as the rest of everything demands our attention and then only for a little while.

Here you are with me in dark places I’ve only ever glimpsed alone before and then you shine your flashlight on me and see me and tell me I am beautiful and bravely ugly. Suddenly, loneliness is a memory. We share our worlds and pains and loves with one another, we make offerings and slowly we learn to trust and take them.

Treading Water

You’re treading water in a vast and dark ocean full of sunken memories and shipwrecked dreams. I’m in my little boat with my little lamp, a carefully protected firelight. Dotted in the distance I can see other boats, other little lights that bob up and down. We communicate with words that float across the water and with body language flickers. Sometimes, many times, our speaking shifts in shape as it travels from one vessel to another, lost in transit our tools for communication are imperfect but necessary and so we keep calling out to each other. We tell stories to share our pain and joy and we cultivate these fierce fragile fires that keep the cold dark at bay.

My eyes are fixed upon you as my mind scans the black, murky water. My body shudders with the memory of the time I too was treading water and how the only thing that got me out was the small cluster of boats that appeared around me. Arms reached down and pulled me out of the water over and over until I had gained enough strength, filled up with enough warmth to once again man my own vessel. I can feel the ghosts of that cold, of those waves, I can remember the fog of my perception, how I saw nothing ahead but the endless treading of water and how I began to close my eyes and let go. Oh the relief of sinking, oh the beauty of surrender.

The horror is bile in my throat. That wasn’t my time. My time will come but that wasn’t it. That would have been unnatural, wrong, ugly. That wasn’t the way I was supposed to go. That wasn’t my time. I still had light to shine in the world.

You’re gasping and choking on icy salt water and you flicker like a firefly. I look down at my hands and see traces of your phosphorescent moonlight which has entered my skin, I watch it travel through the rivers of my veins. I realise that my own light has grown and that the colours and textures revealed can only be observed or occur under the particular phenomena of our light in unity.

My vision of you blurs with the miniature oceans that spill from me and into the infinite everything. I’m calling out to you, imploring you to wait, to hold on, to trust me and to let me help. It doesn’t feel like a choice I have, it feels like I am trying to salvage some precious part of myself.

We only just met.

I pause. Instantly everything is still and quiet and barren and dry like a desert. Who the fuck am I? Who the fuck am I to think I can help? What do I know of the world? Of you? Of your struggles? Is my desire to help you ugly and stupid and selfish? Would it be more humane to let nature take its course? Is this what you actually want? Or is this foolish and naïve? Am I putting my own light at risk? Will I also be sucked down into the murk? Will all of us? What the fuck do I know of anything or anyone besides myself? Who the fuck am I to try help you?

Waves crash across the deck and I am soaked ice cold. My light doesn’t flicker, instead my skin is electrified and my heart pounds and my focus grows more fixed. Who the fuck am I to try help you? I don’t know. I know I’m just one small beacon of light with arms that are weak and easily tremble. But I know that even if I turned around and navigated my vessel elsewhere, every time that I closed my eyes, I would see you treading water and I would never be the same. I don’t know what I am but I know I don’t want to be that.

And I know that I love you.

And as I observe the particular beauty of your flickering light… it doesn’t feel like this is your time to go. Your time will come but I don’t believe that this is it. My heart tells me that you still have light to shine in the world. Phosphorescence, luminescence, moonlight.

So I remain here in my boat that bobs up and down, I remain here with my arm stretched out and my hands open to you. I hope you have the strength to hold on. I hope that I can provide you with enough warmth and light to sustain you and strengthen you so that we can make maps together and navigate us all to warmer places where our fires can grow.

We are weak. We are strong. We are scared. We are love.