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.

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That Cripple Girl

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“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.

The Shape I Am

_MG_7556-Edit(I wrote this in August last year for an artistic feminist porn project that I shot to come out late this year with Post Reverie but I thought I’d post it here too because… because writing this felt important at the time. Because it’s intense and personal and that is important. The photo is one I took awhile back.)

I want to find words that consolidate all the pieces of who I am and what I desire, I want to use language to pin myself down and hold myself still so that we can spend some time together. But isn’t the reality of the thing that we are all phenomena in flux? Shifting somethings consisting of chemistry, biology, shapes, patterns, atoms. As soon as I believe I perceive the shape of myself, it begins to melt into something else.

But in this current moment, the shape I am is probably this. This 33 year old female thing with hair she feels is too thin and eyes that can’t see too far, with heavy breasts that men suck the nipples of for too long, an arse she likes to spread open and a cunt that she has lasered the hair off because the feeling of permanent pornographic exposure arouses her and because she likes the subtle sensations of her girlfriend’s tongue.

That shape calls itself “me”, “I” and a few different names depending on the context. So this is me. I am a creature, a thing of meat and flesh in flux, morphing and shifting as time passes through me. And what do I like? What do I like? How can I expect to solidify my sexual identity when nothing else stays still? I cannot. But the moment I say that, it feels as meaningless as everything and I feel mute and unable to connect or communicate. So I find my definitions in common themes and currents and stories of where I’ve been and how I’m seen. I start to say “I am”.

My cultural context is that I am an outsider. I’ve wrapped myself in words like “polyamorous, kinky, sex worker, slut”, I inhabit the periphery of society with other words like “disabled, artist, queer, woman”. My cultural context is that I am an insider. Existence has arbitrarily granted me privileges of education, relative wealth, the colour of my skin and the dumb luck of being born into a time and place where I can express my notions of myself without being stoned to death.

I am monstrous feminine and devious perversion, an abject other protected by a thin veneer of respectability and the tiny smidge of extra freedom allowed to artists. Words are used to tame, “eccentric, quirky, strange” and alleviate the fears my difference arouses. Strict, paternalistic, dictatorships are right to distrust and restrict the freedom of anyone whose existence subverts the dominant and comforting paradigm, we reveal the horrifying, chaotic truth of reality – that the only truth is change. I am cute and small, I am gigantic and terrifying.

I am a filthy whore who is familiar with the feeling of choking on cock while drool runs down her chin and neck. I am an insatiable slut who eats pussy like she is starving, pushing her entire face into the labia as if she is trying to merge with it. I am a wild thing that craves the calming catharsis of violent beatings and a hand around my throat. I am a beautiful animal who wears colours that stimulate her salivary glands and low cut tops to attract the attention of potential mates. I am a sweaty old pervert who sits at home wearing ugly stained pyjamas and masturbates to porn she finds morally questionable.

I am soft. My physicality and my sensitivity. I wish more lovers would tell me they love my belly the way I love my belly. I’ve never wanted it to be flat. I am strong. Living is hard work that eventually destroys every single being. I am hurt. I am angry. I am furious. I am fucking furious.

For a little while, I played at being property. I gave myself over entirely to another, to my Dom. I let him dictate how I dressed, who I fucked, how I was fucked. With my consent, he beat me, he berated me, he violated me and he loved me. I loved him. I was intoxicated by the intensity of it all, the humiliation, the adoration. I was shocked at the depths of my emotional entanglement with him, when he threatened to have his property tattooed, I was horrified at the knowledge that I would probably acquiesce. Head in the toilet, mouth full of his piss, licking his horrible friend’s balls and altering my entire identity to suit his whims, I was addicted to the dark music of this subterranean microcosm we had constructed. I found myself traversing territories with few other tourists and we touched upon private vulnerabilities and taboos that I may only ever carry internally, until they fade and fall away from memory. For the entirety of that time, I invested my identity into a single word… “submissive”.

That thing we had, that intoxicating, magical, horrible thing… it ended suddenly, violently. It ended well before its time. We should have had many more years yet, we should have watched each other grow old and so I am left with the feeling of carrying around an open wound that leaves me howling. Now I have a knowledge that sex can leave me utterly drunken and immersed and so I feel a new fury at him for destroying the precious thing we had because yes, I blame him completely. Trust is slow to build, fundamentally important and so easy to exterminate. So lately… I feel rage. At him. At everyone. At the sort of selfishness, greed and fear which is causing the destruction of the Great Barrier Reef and the destruction of every little thing that is beautiful and strange and precious and will never exist again. At the ugly, hateful selfishness that destroyed us.

Fuck.

It hurts.

The thing that’s hard to express, however, is that rage is its own sort of intoxicant. I am flirting with my anger and my hurt, attempting to find a way into it that will allow me to harness this wild new energy and channel it into my own agendas. Into a new sort of strength and power and sex that I can invest into other loves. I’m painting more and just recently, I beat a man and sunk my teeth so deeply into his skin that the marks were purple. The sound I made while doing it was the same bellow of animal fury I used to make when my Dom would painfully penetrate me. And then the man fucked me and we made sure that it hurt in all the right ways. I always want it to hurt.

The next night, my girlfriend ordered me to sit still on her bed. She covered my head with a pillowcase and violently pushed a butt plug into my arse so that it actually bled a little which, of course, I like. She then brutally fucked me with a strap-on and the combination of the plug in my arse and her cock in my cunt which is relatively small and tight caused me to scream and cry and cum loudly and violently. She is brilliant, that beautiful, glowing woman who I love and I was so grateful to discover that I can still lose myself in the sublime, ugly violence of sex. And that somewhere in that lies a thread of fury.

It’s new to me, this anger stuff. I don’t yet have the stories and words to define or explain it. All I know is that it feels big and important. He ignited this fury, that stupid, wonderful man I loved. Love. Will probably always love. He unlocked the filthy whore inside me and for that I will be eternally grateful to him. He also gifted me with his rage but I don’t want mine to be mean, petty and uncontrolled like his, I want mine to be brilliantly radiant. And I want to stay soft, radically soft. And I want to stay kind, furiously kind. His sort of anger destroys worlds, I hope that my sort of anger will protect them.

My collision with that man who I love caused a nuclear explosion and the effects were devastating and almost fatal. But now strange new flowers are growing in the altered landscape of my self-perception and their scent intrigues me. I am beautiful, ugly, monstrous feminine and lately as I hold up every single part of myself with curiosity and pride, I feel like maybe I am really fucking powerful.

A lazy form of grief

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I’ve been listening to Tara Brach’s incredible three part series of talks “Freedom From Othering: Undoing the Myths that Imprison Us”. In part 2, she quotes a line from a Nicole Kidman movie that made me feel like I was being punched in the chest.

“Vengeance is a lazy form of grief.”

Brach suggested that the reasons we might decide a person is wrong or bad is because it is a defensive stance that masks deeper feelings of vulnerability, of hurt. In fact, I already knew that because in recent times, I had to cultivate an artificial sort of hatred within myself towards two people I loved. I cultivated this hate in order to create the sort of boundaries, safety and distance that I needed from those people who I’d loved deeply but who were no longer emotionally safe for me during the biggest crisis point in my life. Since then, I have experienced a childish frustration within myself because I did not believe they were behaving in ways that were right, or kind, or good. And the honest truth is that these stories about their bad, hurtful behaviour were playing in my head on repeat. No matter how much effort I made to process, to meditate on forgiveness, on compassion, no matter what magic rituals I undertook to move on and let go… in any moment when my emotions were just a little shaky, I would be right back to ruminating. It felt like my brain was stuck and I was sick and bored of these emotions. I am sick and bored of those emotions.

In Brach’s talk, we were invited to investigate our feelings towards a person who we had placed in our mind as a “bad other” and the reasons we might do that. We were told to look beyond the surface of our anger and disgust with them to the soft place, the truth of our feelings towards them. This wasn’t difficult at all for me, my carefully constructed hate was like the thinnest membrane spread protectively across something deep, almost unfathomably deep.

When you strip away the storylines, all that is left is the truth of our hearts, an animal, vulnerable, child’s need for love and as I pushed through that membrane and into the murky depths of things that hurt, a voice within me cried:

“Why did you hurt me? I thought that you loved me! Why? I thought you loved me! Why?”

I collapsed on the floor where, for a few minutes, I allowed myself an ugly, loud, childish sobbing. I allowed myself to whisper “why?” over and over in the pitiful, superstitious hope for an answer I’d never receive. Then that thing happened that I learned to do last year where I just thought “Enough.” And just… turned the emotion off.

I don’t like that. I don’t this new skill, this ability to go numb and disconnect from my emotions. One of the biggest reasons that I realised I needed to leave him was because, in order to be around him, I was having to switch off my emotions for fear of his disgust. And then I just kept those emotions switched off in order to just… cope. Survive. Live. But as Brene Brown says, if you want to do more than just survive, if you want to thrive and live wholeheartedly, you cannot selectively numb because when you numb your capacity for pain, you also numb your capacity for joy.

I believe this to the marrow of my bone and so I continually strive to allow myself my emotions. Not to get caught up in the stream of them, but to simply honour their transient presence and allow them to flow through me. And so I’ve been turning things back on lately. Processing. Letting myself feel through what I need to feel through. It’s frustrating work, I am tired of my heartbreak and bored of the ways my brain still obsesses over hurt that happened many months ago. But I get it, I get that it won’t go away through sheer force of will, instead I need to grow with and through it. I need to honour my heartbreak and past experiences, even as I continue to move forward.

I loved him so much. I loved her so much. Life is long, hurt happens. I do feel myself moving on but… but when I stop numbing, I am faced with the truth; I still love him. I still love her. So much. Neither are in my life anymore and the part of me that clings, that wants everything to stay the same, that struggles with loss and the ugly sadness of life… that part wants to hear their laughter and to wrap my arms around them and feel the glow of the love we once shared. I miss the way her eyes went wide with the wonder of the world. And fuck… I miss the way he would whisper “you’re the love of my life” in my ear. I miss his whisper with an intense sorrow that doesn’t seem to lessen as time goes by.

So I guess that once someone occupies my heart, they will always be there. And perhaps I will always see things that make me think of them and bring the taste of tears into the back of my throat. But when I let myself feel those things… they pass through me. They don’t pass permanently but they do not dominate with their original intensity. And allowing myself to connect to them, as painful as they are, is also allowing me to connect more deeply to every other intense sort of emotion.

I suppose this is what acceptance is. I am lonely. I am loved. I am heartbroken. I am joyful. I am slowly building a collection of scars both tangible and intangible and they are evidence of a life lived bravely and fully.

I had hoped to hate those who I felt wounded by because that strategy seemed safe and easy. But it doesn’t work for me. I allow myself my anger, yes and I know my boundaries, what behaviours I will and will not accept from the people I keep close to me… but just because they are no longer in my life, it doesn’t mean my heart has closed. My beautiful, broken, hurting, happy heart.

The harder task is wishing them joy. My sense of hurt still runs deep enough that a part of me wants them to suffer because a part of me feels they never learned any lesson from the hurt they “caused” me. That child crying “why?” and wanting the world to be simple and just. But I know everything is more complex than that and so when I go even deeper than my hurt, I can access a place where I genuinely wish them well. And I do. When I allow myself to accept just how much I still love them… I genuinely wish them well.

And that’s what I want. Love is hard work and anger is an important emotion to understand, honour and work with… but not hate. I reject hate. It’s just not for me. It’s lazy and ineffective. And so the process of moving forward isn’t a straight line but circuitous. And that’s just how it is and so that’s ok.

Suicide and Love

(Trigger warning for discussion of suicide and disability, this is actually a positive post but it’s still very intensely emotional stuff.)

Earlier this year, I stood on the edge of a train platform in New York City and nearly jumped. I had been struggling with suicidal ideation for the last two years, my chronic pain had pushed my brain into a clinical depression that was almost relentless and I had experienced several major mental breakdowns, the accumulation of which, coupled with a traumatic event, had left me feeling utterly useless and hopeless and so I stood on a train platform and contemplated jumping. In fact, the only thing that stopped me was the thought of Wes, one of my partners, having to pay a fortune to have my mangled body shipped back home. Sometimes I am still blindsided by the horror, the sickening realisation of what I nearly did.

Lately, my life is really incredible. My arm has been slowly improving and I’m getting back the things I thought I was losing forever, my ability to paint and write and drive and just… just live with some freedom of movement, without my body feeling like a cage that is shrinking smaller, smaller, smaller. I had lost all hope that I could ever be so lucky and so I feel my luck with an intense gratitude and a deep, heartbroken sadness and compassion for everyone who is currently lost, and scared, and hurting and may never be as lucky as I am.

I am also intensely aware that I don’t want anyone to think my life is only better now because my arm is getting better and frankly, that isn’t true. My life actually started getting better before the surgery, it started getting better on the night when, back from New York and in an abject, miserable, broken state, body trembling and eyes red from crying for days, I screamed at Wes to help me, to please help me, please why wouldn’t anyone help me.

He called suicide hotlines and they were not helpful (this is not a criticism of that resource, it’s just the advice that was offered was… ok it wasn’t useful so maybe this is a criticism?) and so instead he called my mother and with her advice and the help of some of my friends and lovers, Wes organised for me to go on suicide watch. For the next several weeks, I had somebody by my side every day and through that process, I realised how loved, how very loved I was. I realised how important love and community and kindness is and my life started getting better.

Then I started meditating, and reading books on shame and daring greatly and grief and finding Buddhism, and practising self-compassion and loving kindness and learning from the wisdom of an ancient philosophy that someone called “positive nihilism” which suits me well as it’s is all about love, connectedness and how to navigate the facts that suffering and change are unavoidable truths.

And I went on SNRI antidepressants as we came to realise that though my reasons for feeling unhappy were valid, nonetheless my health had pushed me into a clinical depression and my brain needed some assistance climbing out of that. And I was already getting therapy and that helped a little though not as much as the support of my friends and family because the mental health support system is overstretched and besides I was tired of the dehumanising process of being a problem to be fixed, that was in fact part of what was hurting me so badly.

And I went through loss, I had two important relationships fall apart at the exact same time and felt the ache and hurt and heartbreak and confusion that comes from conflict with those you love and then I practised self-compassion and honouring my heartbreak and sadness and letting myself move through all the stages of grief and anger and loss and letting go. I am still moving through those but the process of doing it with a great deal of compassion for myself is strengthening me further as heartbreak doesn’t have to harden me or destroy me, but instead can soften me to the pain of others. And as my compassion grew and therefore my sense of connectedness to others, my life started getting better.

And I started letting go of shame. I was shaming myself a little less for not earning money and struggling with mental health problems and I was valuing myself a little more for the contributions I was making in the world. And I realised my principals are entirely about kindness and that made me feel strengthened and driven. I decided I was going to be ferociously kind and I started to get more in touch with my anger (with unfortunate mishaps along the way because I’m still working through trauma and anger and it’s messy stuff) and I started to get more in touch with my pain. And my life started getting better.

Earlier this year, I stood on the edge of a train platform in New York City and nearly jumped. Sometimes I am still blindsided by the horror, the sickening realisation of what I nearly did. I saw oblivion and what I went through had the trauma of a near death experience. And now I look back, I can see that during that time, I felt utterly alone, utterly worthless and utterly helpless because I thought that my disability made me unworthy and meant I could not live a full life.

So though my life is definitely made -significantly- easier because of the surgery and the fact that I’m one of the lucky ones who might be able to get better, I want to reject the toxic notion that the only reason my life is better now is because I am starting to become more abled bodied, more “normal”. Yes, it’s true, I’m happier because I’m seeing that I can start to follow my biggest dreams again. Yes, I’m happier because life is fucking easier. This is true. But it’s not the only truth and not the only possibly positive outcome.

Because it may not have been the case. It was entirely possible that the surgery wouldn’t work and the thing I realised, before I went under the knife, was that even if my body didn’t improve, I could still live a good, full, rich life, it’s just I’d have to work a whole lot harder than most people and I would need to surround myself with gentle people who would not resent me for the things I could not do or be. In fact, I’m still disabled it’s just… less than I was.

So I really want to say this with as much emphasis as I possibly can… if you know someone who loudly complains about their pain, please think twice before you shame them for “whinging” because you don’t know what it feels like to be inside their skin. If you know someone who is engaging in acts of self-harm and suicidal ideation, please don’t dismiss them or get angry at them for the state they are in. It’s so hard to look straight at pain, it’s so hard to look at people who are suffering because the sheer existential horror of it scares us and so we’d rather look away in fear and disgust. But I need to say this with as much emphasis as I possibly can, the only reason that I am alive today is because of the people who didn’t walk away, didn’t angrily chastise me, who instead sat with me through my pain and reminded me that I could have joy. The only reason I am alive today is because of the people I gave love to and who loved me in return.

Let me say that again. The only reason that I am alive today is because of the people who didn’t walk away, didn’t angrily chastise me, who instead sat with me through my pain and reminded me that I could have joy. The only reason I am alive today is because of the people I gave love to and who loved me in return.

Disabled people and the chronically ill can have amazing lives, do amazing things, make the world richer, kinder, wiser. But so many of our struggles are invisible and so much greater than you may perhaps realise so please, as much as you can, strive to be patient and generous and kind and to realise that though someone might have more struggles than you, it doesn’t mean they can’t have brilliant, beautiful, valuable lives. Please, I implore you, behold the pain of others and of yourself with gentleness and kindness, not pity and anger.

My life started getting better when I started being kind to myself and surrounding myself in kindness. That was the thing that saved my life and made me want to stick around in this world for as long as I possibly can, love. Just love.

Heavy

Deciding to live is not the same as wanting to live. This depression is thick and heavy, I feel immobilised. I understand that there are still good things and that there is still hope but that only sits in the part of my brain that deals with concepts, nothing feels good and I guess feelings are the stuff of motivation.

I had a moment of feeling good the other day. The helplessness had become unbearable and so I worked on my website for an hour. It felt… good. Yeah. Good. Because there I was, there was the person that I love to be.  I am so capable of the things I love to do, the stuff of my art, the thinking with my arms. How do I explain that I think with my arms? How do I explain how much it breaks my heart, every single day, to struggle to simply hold them up?

I know I sound like a broken record. I know I am wallowing in self-pity, tortured by the person stuck inside my crippled body. I know there are people who get on with things, no matter what and I fear I am not one of those people. I’m trying. God, I’m trying. I diligently attend my therapy, I try to make myself do things that will be good for me but without my arms to think with, it all feels like a shitty substitute for the life I want and it’s hard to muster up the positivity to feel like there is a point to this. I’m supposed to accept, to adapt, to move forward… and maybe maybe maybe I could actually do that if I knew where I was going but I’m still waiting for the big unknown of surgery.

And it’s two days later and I am still paying for that thinking with my arms for an hour. My body doesn’t allow for much of that anymore. Yesterday, my battle for the entire day was just continuing to sit up because my head felt too heavy and my arms were enormous weights pulling on my neck, stretching what can’t be stretched because it is trapped in spaces that are too small. Nerve pain is like when you lower your body into a bath that is far too hot, you just want to get out get out get out get out get out get out get out but you can’t you can’t you can’t you can’t can’t. You can’t.

I went on holiday recently, two weeks in New York and my body demanded my attention the whole time. I understood then that there really is no escape from the prison of my flesh. It was devastating and lonely. Crying on trains in New York was good though because nobody even cares. Why can’t the world be more like that? Why can’t we just cry when we’re in pain? Why do I put so much effort into concealing how I feel so that people won’t reject me? Is pretending to be ok a prerequisite of love? Life is hard and hurts and why do I feel so much fucking shame for feeling so weakened?

Fuck.

I’ve not been okay for a while now but there have been good days among that. I’m not feeling those good days anymore. I’m just waiting. Waiting for a medical system that is slow, indifferent, expensive and has almost entirely failed me so far. Waiting for the day when I have muscles and bones cut from one side of me. Then the six months of healing. Then, best case scenario, I get muscles and bones removed from my other side and spend another six months healing. And a year later, if I’m really lucky, I might be a little better.

See this is all I can reasonably hope for, is that I might be a little less crippled, or at the very least, that I don’t keep getting worse. Best case scenario, I can be a little better. But I’ve already watched my life grow smaller over the last seven years and I’m so tired and so bitter. I hate watching people do what they love, I see their freedom and it makes me feel so sick with jealousy. And I hate them for not knowing how free they are. And I hate myself for becoming this. I feel like I’m getting old and ugly. I guess I should be in my life, I guess I should be using what I do have and being grateful.

But I’m just not. I’m trying so hard to be. But sometimes the battle just to remain sitting upright, or to not cry in pain when I’m socialising because I want people to still love me and not grow tired of the tedium of my existence… that just depletes me of my mental and emotional energy. I’m so low on motivation. I am afraid that the smaller my life becomes, the harder things become, the less I will have to offer. I feel distant and disconnected. I fear becoming unlovable.

Talking to other disabled people helps sometimes. They understand. They know what a battle just getting through a day is. But nothing seems to stick. Deciding to live is not the same as wanting to live. I’m not ok but I really don’t know what to do about that. I’m doing things, I’m getting therapy, I’m taking on projects but everything hurts and I’m struggling to see the point.

I’m trying. I’m living for him but struggling to want to for me. I guess I still feel some hope but I don’t have anything like faith. Inside my head I observe myself screaming “help” but what the fuck does that even mean.

Shame is Boring

Recently I started making my own little youtube videos and though I’m still feeling awkward as I learn to navigate a new medium, I am finding it to be a very exciting, raw and direct means of communication and self expression. I feel tremendously excited but also incredibly vulnerable, as I allow my imperfections and awkwardness to be seen.

But I am proud of this video particularly.