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.

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.

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.

My Website

Hey guess what? Over the last couple of months, I’ve been able to slowly update my website, after it lying dormant since 2012, as I slowly get somewhat more able-bodied post-surgery. I’m not finished yet, there’s a couple of things yet to come but it’s mostly there! I’ve tried to combine many facets of myself there and this includes the overlaps between art, comedy and smut. So it’s VERY much not safe for work, there’s a LOT of nudity and sexually themed art, you have been warned.

It is such a damn good feeling to be improving enough that I can actually start building my profile as an artist again. I have to work very slowly but I’m able to do it and so putting together this website has been so good for my goddamn heart.

Anyway, blah blah blah, check out my stuff at jngaio.com if you’re so inclined and you can also follow me on Instagram. Viewable on phones but significantly better on a desktop.

Good News

(This is cross-posted from my Instagram where I have been most active lately. It’s not a poetically written post but it contains happy news about my thoracic outlet syndrome and I think this blog needs a bit of that.)

Succinctness will never be my talent but my health stuff is going amazingly well and so I wanted to gush about that.

Before I got surgery for my thoracic outlet syndrome, I was feeling trapped in my body. After years of incorrect diagnoses, shitty experiences within the medical system and my disability and pain increasing with every year, I was feeling utterly alone, utterly dejected.

Four months after surgery (where the surgeons found I had the worst compression they had seen) and I’m actually starting to see real, tangible progress from the physiotherapy I’m doing. I’ve started lifting a half kilo weight and more amazing than that, two months ago I started doing a gentle rowing motion with a very gentle theraband, this was a HUGE deal because before I had surgery, even after a year of physiotherapy, I couldn’t do the row without pain. I simply wasn’t able to do it. But I’ve been doing it for two months now and a couple of weeks ago, I graduated to a tougher theraband, at which point I got tearful in front of my physiotherapist. She apologised for how long and slow this process is to which I responded “no, the thing you have to understand is to me, this is nothing short of a miracle. Before surgery, the idea of being able to do this exercise felt like dreaming too big” and it did… it seemed as out of reach as the idea of me walking on Mars. But it’s happening, twice a day I do twenty rows and it’s hard, my body has a lot of shit that needs correction… but it’s happening! It’s really happening! I’m improving!

Yesterday I drove almost two hours and I was only in mild pain afterwards. Today, I painted for almost three hours and though that was definitely pushing it too far and I need to not make that a habit just yet, for the first time in perhaps seven years, I wasn’t a broken wreck afterwards.

Here’s a portrait I did of an Instagram friend in 3 hours. Ok, I was actually pretty sore the next day but I’m still excited about being able to paint for longer than I could before surgery

I will always have thoracic outlet syndrome, I will always need to keep on top of my physio and practice management strategies. But that’s ok because for the first time in such a long time, my hard work and discipline pays off! Do you know how much easier it is to keep pushing onwards when your hard work gets results? Do you know how much easier it is to look after your body when it isn’t in pain all the time? Do you know how much easier it is to get through the day when you can take a quick drive to the shops without it hurting? My brain feels so much clearer and my heart is opening with the joy of it all.

I am acutely aware of how lucky I am that the surgery for this poorly understood and rare condition actually worked for me. I am, in honesty, still in shock and every day, when I realise how much easier life is for the able bodied, my heart goes out to everyone who struggles against impossible, invisible enemies, myself included. I never believed I could be this lucky. Perhaps in a year’s time, I’ll be using a rowing machine at the gym. Perhaps I’ll be painting every day. But even now… I’m better than I had thought I could possible be when I lost every shred of hope last year. I am so lucky, I am so incredibly lucky.

(P.S this post is public because when I desperately needed TOS success stories, I couldn’t find any. Down the track I would like to make a website about it or something but currently I’m just focusing on my own healing. My second surgery is booked for April 10, I am still pretty nervous because it’s major surgery but I am not terrified like I was the first time.)

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.