No Moral Here

Photo I took in 2017.

Did you know that overexplaining can be a symptom of trauma? When a person grows accustomed, over a long time, to being criticised and/or disregarded, they learn that if they just explain as much as they possibly can, perhaps, just perhaps, someone might at last listen. Truly listen. It doesn’t work though, instead people tune out if you talk too much.  

Did you know that oversharing can be a symptom of trauma? Profound loneliness breeds a need to be seen. Feeling monstrous creates a need to confess. It doesn’t work, though, because one day you realise you’ve exposed everything to everyone, not everyone should be trusted and your truth becomes weaponised. Then you become afraid of sharing anything at all.

Did you know that trauma is somatic? Even if you come to understand the why and how of something, as a dear friend once said to me “the body doesn’t speak English” and our nervous system is trained from childhood. Conventional wisdom says not to live in the past, mindfulness practices help us sit in the present, but what if the past planted something painful so deep inside you that sitting in the present can be a practice of sitting with a deep, aching and ancient feeling of loneliness?

Did you know that suicidal ideation can become a habit? If, for example, you’ve imagined ending your own life since the age of 11, these thoughts and desires create grooves in your brain so deep that you can’t imagine how it must feel to be a creature who only wants to live.

Did you know how pathetic it can feel to be climbing towards 40 and to still struggle with that sinking feeling that often makes going to bed a miserable affair and getting out of bed even more challenging?

Do you know how much work it takes to try to pep talk yourself into putting one foot in front of the other when the world is on fire? And as much as you try not to live in the future, this too is a habit so deep that you’re forever sitting at a point in time where everything hurts and everything ends.

Do you know how hard it feels to fit the shape of yourself into a world that rewards people with thick, callous skin? You watch all the ones you love struggle, you watch the world suffer and it seems as if the only ones who are able to pay their bills are the people eating others alive. How do the Jeff Bezos of the world live with themselves knowing they have the power to change the world for the better… but they don’t?

I want to leave this writing with something positive, something hopeful… but I don’t feel that today. As I age, I want to be wiser. As I age, I want to be stronger. But perhaps this isn’t how it works, perhaps we only build ourselves up for a time before we start to crumble. Perhaps the only thing we can do is practice self-compassion, communicate our suffering and offer each other empathy. The warmth of company as we grow, change and then start to fade like flowers, like stars, like the sun.

Perhaps the hopeful thing here is this: This evening, I saw a knife in the kitchen and flirted, for a moment, with the slightest penetration of my skin. Just a scratch. But. Instead of going further, I instead came here to write and you know what? Giving myself the space to express my emotions has actually calmed me down. I used to write in my old livejournal freely as a teenager and it helped keep me alive. Perhaps that’s a strategy that anyone of any age should be allowed, my inclination is to judge myself for being so angsty, maudlin and childish but the fact is that I felt utterly despairing when I sat down to write this and now I feel a little better and a little calmer.

Did you know that emotional dysregulation is a symptom of trauma? If in childhood, we did not have our emotions validated and were not taught how to process them, perhaps instead being told not to whinge or “dwell” on things, we may find ourselves as adults who are afraid and ashamed of our feelings. Feelings don’t respond well to judgement and shame, they need space for validation, compassion and healthy expression without the person feeling they are “wrong” for feeling what they feel. If, as an adult, we contain a wounded child who hurts as a child does, one of the most important strategies suggested by psychologists and Buddhists alike is to offer that wounded child authentic and heartfelt compassion.

So maybe there’s something positive to this writing after all: Life is full of misery and suffering, it’s ok to feel this, it’s ok to be affected by it and it’s ok to express it.

Then again, maybe I’m just looking for the positives because I feel as if I’m supposed to.

Fuck it. Morals are for fairy tales. I’m going to bed and, as with every night for the past 36 years, I shall not be killing myself. Not a bad track record, come to think of it.

If the land is sick, you are sick.

I just read this article: ‘If the land is sick, you are sick’: An Aboriginal approach to mental health in times of drought.

It made me think…

We were camping in outback NSW recently and the signs of drought were everywhere. The last time I’d been there, the land was abundant with strange and fascinating wildlife, lizards, butterflies, birds and plants I’d never seen before. Now it was just dust and underneath the worryingly dried out trees, I found the picked over corpses of baby kangaroos and baby emus.

I felt the reality of the climate crisis, I saw that we are truly losing these incredible treasures to the devastating affects of global warming. I thought about how Aboriginal Australians have been on this land for over 50,000 years, I thought of the book “Dark Emu” which demonstrates overwhelming evidence of how they had sophisticated agricultural practices that once made this land a fertile and abundant place and how in such a devastatingly short place of time, colonialism and Western agriculture devastated the land.

Not only were their people raped and murdered, not only was their culture silenced but the carefully tilled soil on their land was stomped down into compacted clay by the hooves of imported livestock, the grasses they made bread with were devoured… in a horrifically short space of time, colonialism and cultural imperialism transformed their verdant, fertile lands into something that was so much less.

And it keeps happening. They keep losing their lands because of our ancestors and because of us. Because of our mismanagement of the land our ancestors stole.

There has been a national crisis of Aboriginal suicides, over this summer, eight Aboriginal children took their own lives. Eight. Eight children killed themselves. Doesn’t this just make your heart break? Doesn’t this make your want to break down in full body sobbing? What drives children to such hopeless despair that they take an action that ends their own lives?

As I walked around the outback, there was dust, bones and silence. Too much silence. The climate crisis is not only taking it’s toll on the beautiful natural world around us but also the people least responsible for it happening. Taking action, demanding better from our politicians, our business leaders and ourselves… it’s our responsibility not just for the sake our our natural world and ourselves, but something we must admit that is a dark debt we owe as part of our colonial inheritance.

I love this country. I’ve lived here my entire adult life and I feel it in my bloodstream as much as my home of Aotearoa New Zealand, I also acutely feel my privilege and the understanding that for Indigenous and underprivileged people around the world, the affects of climate change are already here and they are utterly devastating.

Still

Why does it make me so anxious to be still?

Is it our crowded culture of constant competition? Yes but also.

It’s that I don’t want to be back there, isn’t it? Back then. Back when.

Small. Silent. An ugly, isolated, unhappy little monster, sobbing and sniffing aerosol spray in the hopes that she might get high or die. What sort of 11 year old hopes to quietly cease to exist?

One who is desperately lonely and believes that it is all her fault. The egos of children are like that, they believe they are the cause of every negative thing and so by the time they’re an adult and realise otherwise, the emotions are so deeply embedded that they are more like personality or fact.

There is no fact of fixed self. We grow and change. But sometimes it doesn’t feel that way, leave me alone for just a little while, leave me in pain and unable to distract myself, expose me to a harsh word either internal or external and suddenly I’m that little girl again.

I’m sorry, I’m awful, I’ll keep out of your sight. Oh God, I’m lonely, look at me and love me and tell me I’m special.

I’m not that little girl. All I am is phenomena in flux and the stories I tell myself about myself. But how much of my identity revolves around proving to myself that I’m not that little girl? How much energy do I put into being noticed? Into finding evidence – that is never enough – of the importance of my existence?

I’m not that little girl but. Also. I am that little girl. I grew up but she’s still inside me and when she’s feeling vulnerable, as an adult I am learning how to give her the kindness and compassion that she so badly needed back then.

It’s ok my love, it isn’t your fault.

Intergenerational Trauma

I’ve been thinking a lot about intergenerational trauma. Like how someone might be abusive because his father was abusive because HIS father had untreated PTSD from going to war as a teenager.

Then I think, as I often have, about how a privileged person might look at a population of indigenous people and wonder why they “haven’t got their act together” without taking into account what might happen to a people when they have, in recent history, the collective trauma of an entire stolen generation.

I think about how I am someone who has had a relatively stable, middle class upbringing, with access to books, family, love, a roof over their head… and how those things can give one a belief in their right to love, to education, to a voice that should be listened to. I think about someone who has been through a broken home, poverty and homelessness and how that might cause them to believe that they are unworthy of education, of security, of love.

I think about how our self-perceptions inform our decisions and how the outcomes of our decisions inform our self-perceptions. I think about poverty traps. I think about the ways in which we discuss the privileges of money, gender, race and so on… but what about the privilege of love? What about those who haven’t had love in their childhood? Isn’t love a privilege that not everyone is given?

Those who go unloved, or are badly abused or neglected when they are small, when their beautiful brains are still developing… what an incredible, long-lasting trauma that must be. What a tremendous setback at the very start of your life, like the race has begun and your legs are already tied together. How hard that must be, how brave and resilient such people are for pushing onward.

I’ve been thinking a lot about compassion and empathy. How undervalued it is. How desperately we need to cultivate more of it. How many more discussions we have to engage in about the way pain breeds more pain. How someone’s bad decisions might be the result of the only coping mechanisms they were capable of coming to when they were small and vulnerable.

I’ve been thinking a lot about how much healthier we’d all be if we funded better mental health care, if we listened to more stories of people who aren’t the same as us, if we simply sat with ourselves and practiced loving kindness directed both outwards and in.

When I see someone behaving in ways that seem stupid, baffling, or infuriating, I try to ask myself where that comes from. So often, the answer is pain. There is so much pain residing in the hearts of our species, I hope never to close to it but to remain open, to sit besides it with empathy and compassion.

2019 Will Be Beautiful

At the start of the year, I made a Spotify playlist called “2018 will be magic”. It was a desire, a decision, a hope. 2017 was a year of trauma, of mental health collapse, of emotional abuse, of the worst sort of suicidal ideation, of conflict, of loss, of feeling the pain was forever and hopelessness was the only truth, of grief, of decisions, of bones and muscles cut, of hope, of hope, of growth, of change, of love.

2018 would be magic, not matter what. Something had shifted within my eternal landscape, with Buddhism teaching me about the ways in which self-awareness and self-compassion compliment one another, with the realisation that generosity, empathy and kindness are not character traits I had to be ashamed of (how strange and sad and sick our society is that somewhere along the line, I eternalised the idea that these traits of mine made me weak) but that if we give our light openly, it only grows. Light only grows.

Emotional abuse combined with chronic pain and depression showed me what the worst sort of self-loathing feels like which nearly culminated in a cessation of my own existence. Learning the skill of self-love was not as a thing of scented candles and Instagram capitalism, but a thing of valuing and caring for oneself with the same compassion and understanding that you would show a dear friend or precious child. Learning the skill of self-compassion taught me to be better at sitting with the pain of others, while also becoming better at understanding my own boundaries and limits of what sort of behaviours I will accept in others. Brene Brown was right, the most empathetic people are the best at practising boundaries. Love the person, don’t love the behaviour.

And I’m learning to practice empathy for my need to hate, also. Learning to value and protect my right to anger. I still think of my ex at times and have these spikes of pain and rage that anyone could ever call me the love of their life and a piece of shit within the same day. I still feel confusion and hurt, sometimes, when a sense memory reminds me of how I felt so utterly alone and abandoned in New York. I still can’t look at photos and footage of the place without feeling nauseous and shaky. One day my heart will heal and let him go entirely, but I am kind to myself about the effects of trauma and if for now, hate is what my heart needs, I hold that emotion gently, carefully, cautiously, examining it, letting myself know what that feeling is and the grief and pain that lies underneath. I honour the child contained in my heart who cannot understand – even long after I feel I’ve processed it on every other level – how eyes that looked at me with love could suddenly burn with disgust and loathing.

2018 would be magic, no matter what. But actually, it’s been the most amazing year of my life so far. There is new love opening up parts of myself that had previously been unexplored and unarticulated, as well as old love deeping, ripening, strengthening. New friendships blooming, others growing as I learn to better open myself to people with personal truth, vulnerability, sublime stupidity and joy. The have been supremely fulfilling artistic collaborations, absurd, colourful, sexy parties and adventures, a reconnection with my love of nature, learning how much I love my friend’s children, exciting new projects on the horizon and clown school.

Holy fuck, clown school. Where I discovered things about my physicality that brought me joy and insight and a love for my body and movement when a lifetime of chronic health conditions had left me feeling disconnected from my body at best and like it was my enemy at worst. Where I learned to be more brave and vulnerable and open to the stuff of myself than I have ever been. Where I learned how to breathe into the energy of a moment, of an audience, of a feeling. Where I learned to take the energy of fear and ride it like a wave. Where I had moments of feeling myself to be utterly fucked up, utterly insane, a complete snivelling, disgusting, abject mess… and instead of hiding away, I stood up in front of my classmates and rode those energies. Not mental illness, not at clown school, just extreme states. Glorious, invigorating, terrifying, exhilarating and addictive extreme states. Clown school, where the teacher confirmed my belief that you can get so much more out of people if you practice empathy, remain open to their energies and critically engage in their art in a way that is generous and open, without treading on their heart and soul. Everyone got a turn to shine at clown school and it further deepened my belief that we shine so much brighter when we shine together.

2018 has confirmed my horror at the capitalistic and individualistic concepts that permeate our culture, attitudes, relationships and souls. It was an antidote to so much of that. It was a year of sharing, of collaborating, of helping and letting myself be helped. It’s been a year of learning all the ways in which I am privileged and how deep the systems of inequality and oppression are and affect so many living beings.  It’s been a year of opening myself, properly, to my joys, pains, fears, darkness, hopes… and of opening myself, properly, to that of others. This process of openness, of not clinging to a fixed identity, of not shutting down to pain or the discomfort of conflict and of growth, it’s a constant one and it requires the right combination of discipline and gentleness. It’s the work of a lifetime, really.

2018 has contained the continual discovery of how my surgeries have transformed my life. The process is imperfect, my structures are still a struggle and the neuropathic pain has become it’s own disease. Nonetheless, my capabilities have been increasing and I have slowly, steadily, been spending more time in my studio. The feelings are mixed, sometimes it’s joy and freedom and an overwhelming sense of gratitude at my unbelievable luck. Other times it’s guilt, anxiety, fear that I’m too far behind my peers after so many lost years, frustration at the ways in which pain still holds me back, fear that I’ll fuck this up and wreck my body again, guilt that I still get depressed and anxious and whingy when my life is so much better than it was. But I breathe, I give myself compassion, I gently move myself back on track. It’s ok, I tell myself, it’s ok.

It’s ok. It’s better than ok. This year has not been without challenges, deep fears, so many tears and I know the way that life works, I know that it isn’t just an upward trajectory. I read the signs in the air, I smell the warnings in the wind and worry for the entire goddamn world. But I’m resolved to keep fighting for the values I have defined for myself, those of light, love, hope and art.

I’ve made myself a new playlist, it’s called “2019 will be beautiful” and it will. No matter what. No matter what waits in store. Even if I have to frame a steaming pile of shit and blood in plastic op-shop gold, 2019 will be beautiful.

Our Tangled Roots

I’m learning on the fly how to hold the pieces of myself together. It’s a skill I’ve never been good at before, I’ve so often crumbled, wilted, broken down, melted down. But now I know it isn’t just about me, now I know the ways in which the architecture of myself is interlocked with the structures of beloved others so that we hold one another up.

Did you know that some trees fuse their roots together? They share information and nutrients and become stronger within this interdependence.

I used to think that I wasn’t important, that my absence would be to the detriment of nobody. Wisdom came when I nearly ended my own existence and was confronted by the tremendous pain of a beloved. Now I can clearly see the way hurt spirals outwards and I feel, as a deep responsibility, the importance of my continual striving to keep myself intact.

Kindness is to never shame those who cannot cease their disintegration. Compassion is to understand the drive towards self-destruction and know it for what it is; the anguish of an animal in acute pain. Pain that may feel utterly inescapable. Pain that may be utterly inescapable.

Do you know that you are important? Perhaps you cannot conceive of the ways in which your existence enriches mine, perhaps you cannot believe that your absence would leave a permanent wound within my chest. Do you know that you are a source of love and light and joy? Do you know that I’m holding the pieces of myself together for you?

Look, can you see it? Love, can you feel it? My roots are fused with yours.

No Feeling Is Final

There have been many times in my life when I have hovered on the edge of my own existence but the closest call I ever had was last year. I was in New York and in the depths of shame and despair, I was only seconds away from jumping in front of an incoming train. The only thing that held me back was the thought of my partner, Wes, having to spend all this money having my mangled body shipped home.

I spent several months after that navigating my way through the murk and though there were a multitude of things that helped me out of the darkness (community, compassion, Buddhism, books, medication, therapy) there were some words I would often scrawl on my hand, on my studio wall, above the toilet and so on…

“No feeling is final” was something I’d heard my friend Honor Eastly say and it became a mantra for me. It became a reminder that though everything felt completely bleak and hopeless, though I felt completely pathetic, defeated and helpless… I hadn’t always felt that way and that someday, the weather of my life would change and a new season would begin. This is the truth of reality, that everything is in constant flux, including our internal landscapes and our very selves. That reality can be horrifying, terrifying and devastating but it can also be liberating, beautiful and comforting.

“No feeling is final” was a perfect way to gently remind myself that nothing ever stays the same, not even the most profound pain, shame, heartbreak or grief. Those words were a part of what helped to save my life and now those words are the title of Honor’s new podcast on her personal experiences of suicidal ideation, mental health and existential agony. It is so profoundly moving, kind, generous and brave. I would like to implore everyone to listen to this beautiful, compassionate, lovely, important podcast because I genuinely believe that it is going to help save lives. Search your podcast player for “No Feeling is Final” or follow this link. I definitely recommend starting at the beginning of the series.

Right to Exist

“People may think you’re giving up, when in fact you are simply giving in to the reality of your new life” – Toni Berhard, How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers

When you have a disability and suffer from chronic pain, sometimes your achievements will be weaponised; “You could handle making a web series so you could handle having a job.” In fact, I can see how it must look from the outside, when I walk into social engagements bursting with energy, when my artistic output appears impressive to some, it can be hard to look at me and understand how small my life can be from the inside. In fact, I think I’ve tended to keep the smallness of my life hidden out of shame. Now that I have observed this about myself, it is my intention to attempt to shed this shame and open up about the realities of my existence.

Surrounding every achievement of mine is a lot of empty time where I wander about the house, perhaps doing a little bit of gentle housework, listening to music, taking naps with my cats, staring at the wall and crying. This time is my rest time, my recovery time, there is a lot of it and it has intersections with depression. In fact, there is evidence that chronic pain and depression access similar pathways in the brain and so when I am having a pain flare, it is likely to include depression. This lowers my cognitive capacities so that this time is not a productive time where, say, I am reading, learning, studying and resourcefully making the most of my situation by enriching my mind. It’s not like that, it is instead a time where days drift by in a haze of chronic pain and a constant contending with the grief of all the years in my life that have been lost in this limbo of non-achievement.

I have this aspect of myself that is incredibly ambitious, driven by a desire to explore every inch of existence, to travel the world, to make art with every breath, to create just as much as I consume. It is a fire, a passion, a drive and sometimes a mania and anxiety, a fear of missing out, a fear of ceasing to exist. That part of myself has forever been in battle with the realities of my limited capabilities. It is a simple fact that my body responds poorly to a great deal of activity, this is inclusive of stress which causes my muscles to seize and my neuropathic pain to burn and bubble. It is a simple truth that I must surround my achievements with more downtime than most inhabitants of Western cultures could perhaps conceive of.

For most of my life as a person with a disability, there has been no pleasure or joy in this downtime, laced as it has been with shame. What does this shame look like? It is a shame around being financially dependent on others, on not being a productive and contributing member of society, on not reaching my potential. Sprinkled amongst the shame has been fear, fear of missing out, of wasting my life, of how I could possibly survive without the assistance of others. Finally, there is an emotion below all that which is the most raw and painful and that emotion is grief, grief for all the days when I stare longingly at my paintbrushes and have to walk away, grief for the long gone days when I could hold a book up on a train, grief for the bed-ridden little girl I was who spent so much time staring at her ceiling, grief for every other person who has to sit and watch the rivers of life flowing past them.

But over the last year, I have adopted a sort of secular Buddhism that fits within my own life philosophies and values. Included within this Buddhism are meditative practices that I am slowly getting more skilled at as well as regularly engaging in concepts of self-compassion and loving kindness. Through these practices, I am learning to sit more gently and kindly with reality and learning to allow myself joy that shines through my suffering. It is not a joy that denies the difficult truths of things, it doesn’t negate my pain, nor minimise my struggles, however when I accept the reality of my life and am gentle with myself, it makes all these quiet days more bearable.

Often, when I wander the house with a burning body and a blank mind, I feel the tightening sensations of self-loathing and sorrow. Here I am, getting older, here I am with a life half spent in a sort of nonexistence, how pathetic I sometimes see myself as being. It is a cruelty of the constructions of our culture that we believe our only values are in how busy we are, how much money we make, how much we put out into the world and how attractive we remain while doing so. It is a cruel game, it is one I am simply unable to play and I’m tired of feeling as if I have to justify my life. I am allowed to just be. There is no law in the universe that requires proof of our right to exist, a flower, a tadpole, a pebble, a sunbeam, a teardrop… none of them ever worry about their worth.

I sit outside on my deck crying for the third time today until eventually the tears cease. I breathe. I watch clouds morph and merge in the springtime sky. I breathe. I sit with my pain with gentleness, putting less emotional energy into investing it with value judgements that are always so cruel. My cat chirps at me and jumps onto my lap, her fur is luxury to my fingertips. My heart swells with joy and love and gratitude.

I’ll cry again. These cycles will happen again. I breathe. I accept. It’s a relief to let myself be in exactly what I am. This isn’t giving up, this is letting go of the struggle against reality. Much of my life is lived very quiet and very small. That’s ok, there is so much beauty right here, right in the midst of the suffering.

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.

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.