Grateful Growth

EPSON MFP image

So I’ve been having a really bad pain flare during this week just passed but I’ve been in very good spirits. Why? Because I’ve realised that these horrible pain flares are now relatively rare, only happening a couple of times a month and this one’s only lasted six days now. They used to happen all the time and often last a month or more. A year and a half since the first surgery and almost a year since the second surgery for my thoracic outlet syndrome and things are slowly improving with my body. Having those muscles cut and those ribs removed was one of the best decisions in my life!

I’ve been slowly becoming more and more able to produce art again. The process is still slow and I’m still painting less than I’d like – perhaps four hours per week now. But that’s a significant improvement to before surgery! Here’s just a few pieces, randomly selected from my website www.jngaio.com, that have been done since my first surgery (click on the pics to see bigger versions.) There’s more on my website and more in the process of being made/documented. Slowly, surely, I feel I am developing a stronger artistic voice, Slowly, surely, my style is maturing and catching up with the stuff going on in my mind. My disability and chronic pain no longer dominate my life the way they did and for that I am deeply grateful.

I still have a lot of healing and strengthening of my body to go and sometimes I have setbacks but to have tangible signs of improvement, to be gaining my art back… this is so deeply good for my self-esteem and morale. I am so profoundly lucky that after all the years of struggle and pain, I was finally able to find medical care that has helped me and I am determined to never forget how lucky I am, to never forget all the people who are still in pain, still lost, still feeling hopeless and helpless. I’ve been there and I’m determined to remember my suffering as a means of keeping my heart open, with compassion, to the struggles of others.

Your pain is real, your struggles are real. I see you. You are not alone.

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.

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.

First Feelings

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.

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.

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.

Tonight

Tonight I am wallowing in a psychological rut. Letting go is so much easier when you’re moving forward, it’s this reality of my physicality that forces me to be still until the pain decreases.

If the pain decreases. God it takes so long and the surgery has caused new issues that at least are not the same issues but I’m forced once again to sit still. So I read Buddhist philosophy and meditate and tell myself I’m teaching myself to sit more comfortably with the unavoidable reality of suffering and sometimes I feel so proud of my resilience, of how I can weather the most violent and painful internal storms. Sometimes I feel so wise, so connected, so grateful, so much love and so I work to keep my focus on the beauty that is a purring cat on my lap, a storm of autumn leaves on the road, my mother humming in the kitchen, a lover telling me I am beautiful.

And I am getting better at sitting in this stillness, there are moments when I feel the reality of my body and accept it with grace and calm. There are more of those moments now as I have begun to let go of needing to meet any standards but for the ones that are realistic and kind. Everything is easier now that I am kind to myself.

Easier but not easy. Sometimes I look at my life and see how much of it has been spent from a place of enforced stillness, watching as everything moves and grows and shifts around me and I am forced to wait while my body ages and my face starts to sag. I no longer want to dwell in the bitter taste of envy when I behold the able-bodied who know not the privilege of doing without thought, I no longer want to feel as if I might die when I watch other people paint or play music or do whatever they love with unnoticed freedom. But when months go by and I am unable to pick up a pencil or brush without unworkable pain… well, to pretend that isn’t devastating would be a lie. It’s grief, it still is, maybe it always will be.

There is that temptation to fall into that grief and succumb to an overwhelming hopelessness like I once would have. I can see why I wanted to go there in the past, I can see the horrifying way in which giving up would have been a relief. This existing in my crippled and chronically painful body is hard work, it requires constant vigilance, such intense internal work, such a deep and brave and thorough exploration of myself, my worth. It requires the ability to stare into the cold face of reality and unrealisable dreams, it requires the ability to resolve to keep trying and loving and hoping no matter what. It requires a dogged determination to perceive the beauty and tenderness in whatever I might face, no matter how utterly cold and cruel it all seems.

It requires a deep humbleness, an uncompromising kindness and a gentler hold on my own ego. It requires the careful cultivation of people who can hold space with me through light and dark, sickness and health. Compassion has become non-negotiable.

Tonight I am wallowing in a psychological rut. Tonight I may cry for an hour and feel entirely bereft and alone. Tonight I might not be ok. Tomorrow I may step outside and notice something overwhelmingly beautiful such as the drama of sunlit storm clouds. Tomorrow I may read a book that takes me out of myself. Tomorrow I might have a drink with friends who make me feel loved and content. It’s light and dark just every day, it’s pain and joy just every day.  The magical highs, the tedious lows, much of it is unavoidable and inevitable so I might as well learn what I can from it all. I hope, no matter what, that I can learn to navigate the entire spectrum of experience with equilibrium, curiosity and dignity.

That Cripple Girl

“I just don’t want people to think of you as that cripple girl.”

A lover said to me as we lay in bed together, he was questioning why I regularly wrote on social media about my experiences with my thoracic outlet syndrome. Later in our relationship, he begun to accuse me of whingeing and playing victim when I expressed my anxieties about money, he was angry at me because I had achieved some big things with creative projects which to him proved that I was therefore capable of working, if only I was creative enough to come up with a solution, if only I stopped whining, if only I stopped acting helpless and started living in the real world like he did.

“You are just a piece of shit to me right now” he said and because he’d also been calling me the love of his life, I sat and I listened. At the time, his words hurt like hell because I thought he was right. I thought perhaps that I had earned the disgust burning in his eyes and I even felt a sick sort of gratitude towards him for “just saying what everyone is thinking” because secretly, I did believe that people must look at me and think that I am just weak-willed, attention seeking and whiny. I challenged myself to speak openly about my experiences with my disability in order to combat those fears and to decrease the isolation a person can feel when they experience chronic health issues but it didn’t mean I wasn’t afraid of being secretly judged. I was, in fact, really afraid and often still am. After all, I had had that exact experience in my childhood when I was chronically ill and my classmates would tell me that their parents said I was faking it. I’ve had doctors tell me there is nothing wrong with me. I’ve had a lot of people’s responses to my health problems make me wonder if I’m crazy.

Several months after I left that lover, realising that his behaviour was emotionally abusive while still struggling with the fact that part of me still believed his words, I got surgery on my right side. I had two scalene muscles in my neck cut and my top rib removed. The two surgeons who performed this procedure on me said it was the worst case they had seen. When I was told this in the hospital, I broke down in tears, along with my mother and husband who both held me and cried with me. After so many years without diagnosis, so many years of having an invisible disability, to have a specialist in my field tell me I was a worst case he had seen was actually incredibly validating and I will always have the scar to prove the reality of my experience to myself and to others.

The improvement was almost instantaneous and for several months after surgery, I was able to progress with my physiotherapy and was even able to start painting more and more. However, for the last month, my right shoulder has dropped and have been unable to do anything. This has been really scary and disheartening but tomorrow I see my physiotherapist, who has been away, and on Monday I see my surgeon so hopefully they can offer some answers and help me get back on track because I’m scheduled to be operated on my left side on April 10 and this has made me a little anxious about whether I’m making the right choice. I’m actually still reasonably sure I am because on my left side I have some signs of arterial compression which can be quite dangerous.

Despite the emotional turmoil of the last month, I have been struck by how resilient my mental health has been through this experience, compared to last year when I was suicidal and despairing. A few things have changed since last year; I started reaching out to people more for help when I am too sore to get things done myself, I’ve been meditating a lot, I’ve been reading lots on self-compassion and focusing on not shaming myself for doing what I need to be happy. The biggest part of that ability comes from one simple realisation:

I am that cripple girl.

My disability affects every aspect of my life, every decision, every night, every day. Though disability is not visible on the outside, though my face does not crinkle in pain with every movement I make, it is omnipresent in ways that someone who is able-bodied could simply never truly comprehend without living in the reality that is my body.

Over the last three weeks, I hadn’t been posting about how bad things were because I was afraid people would see me as whingeing. I had been so positive, so excited, so productive until just recently and I was afraid that people would be disappointed with me, exasperated with me for not just getting better after surgery. But for many disabled people, there simply aren’t easy answers because bodies are more complicated than we currently understand. Over the last month, I hadn’t been reaching out to my friends and family and talking about how I was scared, scared of how the surgery seemed to be causing new problems for me, scared about going under the knife again in April, sad and unhappy because I haven’t been able to do most anything while I’ve been having these problems.

But then I realised I had to call my friends, I had to start writing again, I had to start talking about my experiences because this is the reality of my disability. Because there are no straightforward answers. Because this is hard and I need support through it. Because this isn’t my fault. Because this could happen to anyone. And when I reached out to people, I was met with nothing but compassion.

Because I am that cripple girl, that’s just my reality. I’m also that artist girl, that queer girl, that kinky girl, that comedian girl, that kind girl, that weird girl, that short girl.

I was talking to my therapist the other day, a new one I started seeing to figure out why it’s taken me so long to work through the hurt done to me by that ex-lover. The conclusions we’ve come to is that my ex-lover triggered deeply held fears I’ve held about myself since childhood and my adult insecurities about being disabled. My therapist said that he believes that some able-bodied people struggle to sit with the reality of disability, because they can do things and the idea of not being able to simply do those things is horrifying for them. It’s easier for them to judge you rather than to sit in compassion with your experience. He described my ex’s response as emotionally lazy, he said that being disabled is hard enough work without expelling energy on people who are not kind, that disabled people in particular need to surround themselves with people who are thoughtful and compassionate.

Compassion is not the same as pity. Pity is “you poor, sad thing”, pity is looking down at a person and thinking you could never fall as low as them. Compassion, however, is standing face to face with someone as an equal and realising how easily their struggles could be your own. Or as Buddhist nun, Pema Chödrön put it:

“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 am that cripple girl. It’s simply a fact of my reality. It makes my life really hard in a lot of ways which I reserve the right to talk about, to emotionally struggle with and complain about. I am that cripple girl and sometimes being trapped in this body of mine is the stuff of existential horror. But that’s only one part of my life, one part of me. I am that cripple girl but if you think that makes me sad or pitiable, the only person that says anything about is you.