What

What is this feeling is it biting off more than I can chew so my jaw hurts so my eyes pool up with salt water and I drive down the road blank and staring and watch the road don’t forget to watch the road what is this what is this what is this.

I’m scared scared for him of him scared of my own desire scared of whorephobia homophobia every phobia scared of this claustrophobic isolation sensation scared I’ll wind up dead braindead spine snapped windpipe crushed. Scared of silence no more phone beeps no more messages scared of the darkness scared of the truth no the half-truth scared I am scared.

The weight of the world is crushing away his joy and I’m afraid of anger and maybe I don’t know how to hold space for it I don’t know what is safe and what isn’t maybe the other one was right maybe I don’t know how to deal with anger maybe the one before was right maybe my sunny optimism is sickening stupidity naivety what am I doing what am I thinking what is this Buddhist bullshit I cling to to surf the waves of suffering what is this what is it.

How do I explain this to someone anyone how do I separate the threads of stories how do I articulate my needs my fears my concerns how do I even start where do I start I don’t know how to start don’t know how to explain don’t know who can hold this darkness don’t know if I should hold this wonder if my light is foolish.

What are the warning signs and what are the answers and what if I’m stupid and what am I doing and God fuck I feel lonely and I don’t know where to put that like I act as if I’m so wide open to the world but perhaps it’s just an elaborate protective mechanism I expose so much and hide so much more.

What is this am I triggered is this hormones are these warnings what do I do what do I say what.

What the fuck am I doing. Maybe I don’t know a single thing.

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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.

I Wish

I wish I could travel back in time. Back to when you were wide eyed and tiny, back before the world had you so badly battered and bruised. I wish I could hold you in my arms, kiss your sweet forehead, stroke your soft hair and tell you that you’re safe. I wish I could have made you safe, kept you warm, sheltered from what was yet to come.

I wish I could soften the world around you. I would file and smooth the rough edges so they could no longer pierce your skin. I would take away the violent forces of inequality, brutality and modern forms of slavery that suck away your blood, breath, strength and hope. I would take you to an open field and watch you frolic in the daylight. I would strip away my clothes and frolic with you.

I wish that I could shoulder your burdens for you. If only I had a stronger frame with which to carry things, I would take it all off you so that you might experience a lightness so profound that you take to the sky like a butterfly.

Were it an option, I would take a thousand beatings to see you flying free. If I could negotiate with the Gods, I’d offer my soul in exchange for you emancipation.  But, mortal and small, all I can do is hold your beautiful hand and love you with all the things that I am.

Sometimes I feel overwhelming dismay at my own impotence. In the cold reality of existence, the beat of my heart feels like a speck of dust in the face of a tidal wave. Feeble, I feel, foolish. But when my heart pounds and glows just underneath my ribcage, I know it is the only thing I have to give.

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.

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.