No Feeling Is Final

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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.

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Right to Exist

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“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.

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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Days Like Today

Days like today, days when my life feels so full and so ripe with possibility, days like today I am so fucking glad that I didn’t jump in front of that train.

At those darkest moments, when everything hurt and I felt so worthless, when it felt like the pain and shame was all I had, at those darkest moments I had no idea how much joy and hope and light was just a few steps ahead of me.

The dark days are still there, pain is still a struggle but the shame is so much quieter, my heart feels so fucking full and so I feel strong and resilient. I feel so fucking rich, so gloriously fat on love, sex, connection and art.

At those darkest moments, I thought I knew what I was. At those darkest moments, I thought I knew what my future was. I did not. I could not. Days like today, I am so fucking glad that I didn’t jump in front of that train.

in and out

The rules state that pain must be internal. Like blood, milk, shit, piss, cum, tears, farts, ugly laughs, dirty sex, pubic hair… We are horrified by anything that highlights the truth of us as vulnerable, organic, meaty, stinking flesh. We love fruit when it is ripe and are revolted when it rots. We are tormented by taps that leak.

Those who expose the truth of us too freely are labelled impolite or scary or dangerous or insane. They are shunned, they are punished. If we don’t stone them to death, we laugh, we gossip or slowly, cautiously back away.

There are so many things we have all silently agreed not to talk about. Don’t talk about the things you want the most. Don’t talk about the things that really hurt. Don’t tell us how you really like to fuck. Don’t tell us how scared you really are. Don’t be too angry. Don’t be too much. Don’t.

The veneer of civilisation is thin and tenuous. We guard it out of necessity, it’s a useful structure, it’s a good thing that we’re not always raping and murdering each other. But within our constructed comfort, we become so fearful and feeble. We forget the flexible pragmatism of social structures and mistake them for inviolable law. We make Gods and use too much antibacterial hand wash and have too many four-wheel-drives in the city.

It’s claustrophobic. It’s suffocating. It makes deviants of us all and when we don’t fit in for our sex, our skin colour, our poor health, our pain… the feeling of isolation is devastating because we are social creatures who long to be loved. We fear that if we show the things we truly are, we will be shunned. But then we are alone and our loneliness accelerates our rot.

I hate it. I hate the artificial walls we thoughtlessly and religiously maintain. I grow all the more determined to smash them and this involves a process of directly observing myself and then attempting to communicate those observations. I try to catch myself when I engage in the act of self-censorship, I ask myself to be less fearful.

So tonight I’m going to attack a personal taboo that I never talk about publicly. Today I received a blow I’m struggling to cope with. The specificities of it don’t matter in this particular piece of writing, what matters is that tonight I was screaming at somebody who probably loves me more than anybody in the world because I was furious at the world and furious at him because sometimes he has been my only reason for living and today I hated him for that. For keeping me alive. For not letting me give up. For being my fucking hero.

I am not proud. I am whatever is the opposite. Ah, ashamed. I am ashamed. As I should be. My pain is not his fault. He tried to help me and I bit him.

He went to bed and I didn’t know what to do with myself. I wanted to paint but could not. I wanted to leave the house but my arms were throbbing in too much pain to drive. And though I was feeling self-destructive, I wasn’t up for going walking in the night-time and inviting other people to do the job for me.

So… I have no idea why, but I filled the bathtub with my UHT, lactose free milk that for some reason I always feel a mild and undefined embarrassment for drinking. Then I sat in the bath, singlet and underpants still on and gently pressed my surgical knife into my thighs to make the most slender red lines. It wasn’t a violent act, it required barely any pressure whatsoever.

It calmed me. Just like it calmed me when I used to engage in the same activity (minus the milk) as a chronically ill teenager. It gave me that same sense of control and quiet and I was in awe of the beauty of red blood on white milk. The bathroom was perfumed by the odor of milk. I have never experienced a room full of the smell of milk before. That comforted me. I swirled the creamy liquid around and watched the water turn pink. My mind became empty, the way it used to do when I would paint. The way it did when I smashed those glasses. 

Even as I write this I am so aware of how it could scare and anger people. I am not keen to be perceived of as crazy because I do not truly believe I am. What I think I am is someone who, like many people, is experiencing a lot of pain and sadness and is trying to find a way to effectively express, communicate and manage it. I’m not advocating for self-harm but… Fuck, maybe I am. Maybe tonight I can’t think of anything wrong with the pretty and harmless marks I made on myself.

I took photos on my phone. I think that they are beautiful and I love the raw immediacy of cell phone photography. I want to post them here and am going to. Even as I know that this thing which I think of as beautiful and vulnerable will be seen as… ugly, stupid, childish, scary. Even as I fear being feared and thought of as crazy and no longer taken seriously.

That’s ok. I have to be ok with that. I want to be brave. I want to be a person who isn’t afraid of the things that most people are.

The marks on my leg sting a little but a lot less than my arms hurt every day. I guess I am a mess. I guess maybe I need help but I also feel like… this isn’t a cry for help. This is… I don’t know what this is. I’m just tired of feeling trapped. My body is a cage I cannot escape because it is a tangible, physical thing but those invisible walls we construct, I just want to burn them to the ground and then stand in the ash and embers, screaming like Xena Warrior Princess. This is how I obtain a sense of power and that’s no small thing.