Darkness and brightness both

Taking my little love to the pool in the hot weather, she runs before me splendid and energetic while I shadow her, watching for danger. She is everything I ever hoped for.

Both girls home, baking in my kitchen. My heart bursts with joy.

Away on holidays with Nana, who is too sick to stay. The big plans get put aside again and yet I know, how deeply I know, the mundane things are sacred. She brushes Poppy’s hair, we play a child’s board game together on the floor. When health is lost these are the things you dream of, to have enough strength in your arms to brush their hair.

Some mornings I wake to the feel of death and the memories of those I’ve loved. If I can find way back into my dreams I often wake later to a different, kinder world. Sometimes I find myself reaching for a sense of meaning and falling instead into a dark void. Each time I must weave my own answer, and each day the answer needed is new. My life slips through my hands in fretful hours.

There’s been such pleasure in my studies. My mind enjoys complexity and challenge. The health of groups is a topic well suited to me. I’ve learned many things that have been questions for a long time. I’m always asking questions about the nature of the world, of reality, what it is to be human. My life can be measured in my pursuit of understanding, what had emerged and from which sources. I find myself curious that in some ways public health is so ignored. We consult psychologists about the health of crowds when they spend very little time studying this. When you want to know why individuals behave as they do, they are excellent. When you want to understand why entire groups behave in certain ways, public health is invaluable. It embraces complexity, exploring the causes and the causes of the causes. Social determinants emerge and I find research to support many private theories and wisdom from lived experience. It’s incredibly validating in many respects. It provides the context I’ve been craving.

I’ve gained confidence and learned gradually how to not write to excess, to do only what is required. My marks are very high and I feel a thrill of accomplishment. I’ve been exploring my next study plans for months and have not yet settled on a solution. Pleasure is one thing, but viable work another. I remain perplexed by the challenge of what I can meaningfully and profitably turn my hand to.

I still wish to pursue my questions, to build frameworks and explore knowledge. I adore learning and even more so in the company of other learners. I have theories about psychosis and multiplicity I wish to develop and share. I know there’s such a need for training and teaching that’s complex and authentic, so that calls me. I’m still seeking more understanding of wildness, art, Narnia, poetry, safety, and why some things make us feel alive while others numb us and break our hearts.

I’ve started working with a business mentor I have great respect for. Gradually I’m untangling some of the knots that have bound me – the need for my work to be somehow unique and spectacular, to build it quickly, to find confidence despite crushing experiences and limited qualifications, to not work alone, to work in ways and places that use my skills and skirt my limitations. To have others set my pay and value my skills because my self loathing forbids me to set myself above the lowest paid and punishes me for ambition or self interest. The fog slowly clears and I find some possibilities emerging. I cannot tell how long the path is that lies before me, and I’m often silenced by my awareness that showing behind the scenes of this area reduces confidence in my capacity, that when I pull aside the curtain to show my doubt and humanity I do so in the terribly shiny setting of consultants and entrepreneurs who sparkle with confidence. Authenticity and public sharing have costs and limits I struggle at times to navigate. And yet, so much of my credibility is based not on my book knowledge but on my capacity to articulate things I’ve directly experienced, and synthesizer it with wider knowledge. And that includes the darkness, the self hate, the terrible blocks that keep us from things we dearly love. I’m not alone in this struggle and neither are any of you. Struggling is part of being human.

In therapy I’m working on self compassion, an extraordinary challenge for someone deeply wedded to self loathing. I pick apart old journals and blog posts, looking for threads and connections. Somehow it’s connected to my struggles with paid work in ways I don’t yet understand. I’ve been trapped here a long time and my struggles, hopes, and self hate have not freed me. I’m trying to face it with calm acceptance and find compassion for this unreachable dream and my own compulsion to keep reaching even though I fall every time.

When I let go of paid work I feel free, and then my sense of self and meaning fray and I start to free fall into despair. When I strive to grasp paid work I become broken by my obsession, working intense hours in impossible circumstances and exploiting rather than nourishing myself. So the path forwards becomes not one thing or the other. A medley of intention and distraction, a part time world of parenting and art and study and paid work and therapy. It is extremely painful, utterly confusing, and thrillingly wonderful all mixed in together.

I don’t have those answers yet but I love and I am loved, and I’ve found good company for the journey. My heart is a tangle thorn and my hands are shredded but my mouth is bright with kisses and my books comfort me when the world goes dark.

Studio Opening Success

My Studio Opening was delightful. Thank you to everyone who came, brought gifts, sent messages of support, or signed up as a philanthropist, I feel very loved. It was a pleasure to share my space and I’m delighted to hear it was inspiring for others creative pursuits too. There’s something incredibly special to me about studios and behind the scenes peeks into the home and birthplace of art. One guest is even looking into renting a space themselves, and there’s several lovely Christmas gifts safely on their way to new homes. The weather was bizarre but the cookies were delicious and the company even better. 💙

Image description: non binary person with short spike brown hair and teal lips smiling at the camera in front of art sketches and photos pegged on a string.

I’m about to leave for a week, when I get back I’ll create a walk through video and share a few special embellished prints I’ve been working on recently. I’ll also send my first philanthropist only email and start my gift lottery for these wonderful supporters. You folks are the best and I’m excited by what’s possible with your help.

Embroidery sampler

It’s been a glorious day. I’ve handed in my final large assignment for my grad cert in public health. We’ve passed our rent inspection. I took the day off and went to the zoo with my family. It’s the first day in about 6 weeks I haven’t woken up feeling hideously anxious. I’m happy.

Image description: a needlework project in progress. A multicolored bird embroidered using a range of stitches onto cream cotton. On the right is a pouch of sewing tools and threads, above that is paper with a sketch of the bird and names of the various stitch styles.

I’ve taken up embroidery again because I find it helps when my mental health is rough, and I’ve been grabbing onto everything that helps. Darling Rose is dealing with a lot of trauma stuff, which means I am too. My doctor put me on an antidepressant to try and reduce my anxiety, the starting process of which has been absolutely brutal with severe side effects including ironically enough severe panic attacks where my body goes into shock and chills. They are finally starting to ease off which is such a relief. I’m starting to embrace my life balance of part time work, part time study, and part time looking after my family – along with play and rest and hobbies and friends. Getting out of my obsessive focus on work is very difficult but so rewarding.

I’m absolutely thrilled that I’ll be graduating. I now have so many further education doors open to me and I want to do all of them. I’m taking my time deciding.

My week still contains holding the fort after trauma therapy, preparing for a family holiday, my studio opening, and face painting. I feel so relieved and joyful after every goal we nail. At some point I’ll finally empty my inbox again and all will be well with the world. In theory.

Embroidery is something I initially took up when very ill. I’ve loved doing it again, the little bird is a sampler of useful stitches to use as a guide for other projects. There’s a major art series I’d love to do one day in embroidery so honing my skills will help with that. Right now it feels like I’ve been battered on rough seas for weeks and I’m finally resting blissfully on an island in the sun. Soaking it in.

Studio Opening this Saturday

If you’re local, you’re welcome to visit my lovely art studio this Saturday 30th Nov, 10.30am – 12.30pm. Get your $5 ticket here, kids and philanthropists are free.

It’s extremely rare for me to invite folks into my precious creative space. It’s been a couple of years since my last studio opening, at my previous studio in the city.

I’ll have some lovely art work available to buy of course, but there’ll be no sales talk. It’s a celebration of my new venture over at Armchair Philanthropy. I have just set up my special mailing list for philanthropists and I can’t wait to send them the first message to say thankyou and share gifts and talk about the next project I’ll be working on.

Given it’s the silly season I think it will be a very intimate opening, so I’ll be happy to give art demonstrations, answer questions about my creative or community work, or just hang out together. You know me, I’m a ball of anxiety about selling my stuff but love to feel helpful, so come and talk to me.

There is a lift for those who need access help, but there is a small step to get in to the building itself at the front, through the art supply shop. Huge steps at the back! Let me know if you are concerned and I can send you a photo or short vid.

If you can’t make it but you’re keen, keep watching the blog or hop onto my mailing list. I’ll be sharing a little walk through video for all the readers from further afield. Don’t like you folks to miss out either, don’t worry.

Beyond dogma and empathy failure: the power of listening to understand

I’ve been enjoying and slightly overwhelmed by my new Public Health class: Global and Environmental Health Issues in equal measure. I was surprised by the info on systems thinking, which makes complete sense when you’re thinking in terms of ecology, I just hadn’t expected to encounter it and I’m very pleased to learn more about it. My favourite quote so far has been from the Global Health Ethics video by Greg Martin:

If you want me to take your argument seriously, you need to show me that you can argue the counter-factual. If you can’t, then it’s likely that you’ve taken an unthinking, dogmatic position based on some sort of knee jerk philosophical reaction that you had, and you really need to take a closer look at the other side of the argument.

Greg Martin

This made me extremely happy to hear because I’m often frustrated with people’s unwillingness or incapacity to consider opinions they disagree with (even when I disagree with those opinions too). I’m especially concerned at the way this is at times used as a kind of badge of honor that the wrong ideas are so wrong and illogical and irrational they can’t be even comprehended by sane and sensible people like us. Our failures of empathy and imagination are not a merit, nor are they proof against being wrong! Many opinions that are awfully wrong have excellent merit from particular perspectives. Moreover being able to deeply empathise and understand other perspectives is a crucial step to being able to engage them.

Understanding the building blocks of ideas and beliefs – the experiences people are extrapolating from, the accepted wisdom of the experts they trust, and why they are trusted, the logical fallacies we are all so vulnerable to, and often the ideas start to become less incomprehensible and outrageous. Your own ideas are formed in exactly the same ways, which is worth keeping in mind. We are all highly fallible, and we all extrapolate from personal experience and are vulnerable to bias. It’s not unusual, it’s the human condition, however diverse the result. We all share similar processes in how we develop and defend our beliefs, even astonishingly unlikely or dangerously untrue ones that may be experienced in psychosis. The mechanisms and interplay of knowledge, experience, and emotion are surprisingly standard. We have more in common than we think, which can be an uncomfortable thought. It’s far easier to remain baffled by opinions you hate and the people who hold them than it is to acknowledge common ground and genuinely ask “why do they believe that?” – whether we’re taking about someone with opposite political beliefs or “crazy” paranoia. The unsettling reality isn’t how diverse we are, it’s how similar the underlying mechanisms of our beliefs are. We build our ‘sanity’ with the same blocks that also build ‘craziness’ and ‘wrongness’.

The heart of being able to listen and learn like this is a concept I think is best summed up by the phrase “Listening to Understand”. It’s an empathetic stance, but that doesn’t mean it’s mindless – to the contrary the more complex or different the ideas, the more you’ll need to be able to think carefully to reconstruct the framework you’re hearing. It’s not listening to find differences to debate, or even common ground to connect with. It aims to leave unchanged whatever is presented, but to simply and deeply comprehend it and be able to articulate it.

This type of listening is a profound tool to have in your communication kit. It’s an essential aspect of community engagement, research, interviews, and relationship. In formal settings it’s often needed to be able to translate and transport opinions into other spaces, such as understanding why people believe and behave the way they do when you’re trying to design a health intervention, training, or policy. Failures of empathy are behind many failed efforts in governance. When we do not truly understand an issue our best intended efforts are often half effective at best, and may be horribly harmful instead.

In teaching, this empathetic engagement is crucial to bridge the gaps between what people know now and what are trying to teach. Education is far more than imparting information, it is often about a process of shifting frameworks and belief systems. Long after the facts have faded the mindsets and beliefs remain. Poor quality education neither knows nor cares what the current knowledge and beliefs are, it simply imposes over the top. This is why so much cultural awareness training fails, it is underfunded, too brief, and places heavy burdens of understanding bigotry and the ignorance of privilege onto those who suffer the worst consequences of it. It is experienced by those forced to sit through it as a set of new behavior rules and rejected as “PC” thought policing because there so little time and capacity to empathically bridge what the beliefs are now, with the ones you are hoping to instill.

In informal settings it’s about having a more informed perspective on the people around us. We all make assumptions constantly about what’s going on inside each other, what we really think and feel and why we do what we do. We have to do this in order to predict each other and function socially. Far too often when it comes to divides of belief we defend our own perspectives by staying willfully unaware of what and why others think as they do. This failure of empathy means we often set up strawmen not as a deliberate strategy but simply because we’ve failed to grasp the real position of the other person.

This approach of listening to understand is tough in everyday life when we’re trying to have relationships with people who have vastly different and at times flat out incorrect ideas. It takes a special capacity to listen closely and be willing to be unsettled by the internal logic of others’ ideas to begin to understand why people think, feel, believe, and behave the ways they do. It’s also very humanizing and can connect us across divides. It can also unmask narcissism and predatory behaviour that hides in the imitation of caring words but is revealed by patterns of behaviour where people are harmed and discarded.

Being able to listen this way to people very close to us creates opportunities to be seen and heard and validated. It bypasses the trap of ‘who is right’ and moves instead into wanting to get inside the other’s perspective and really understand it. It shows how limited our internal models of each really are, however well we feel we know someone, the real person is always more nuanced and complex. There’s always things we don’t know, influences we hadn’t considered, conclusions we weren’t aware of. Particularly in long term relationships, we often feel secure that we really ‘know’ each other, and more and more we relate to (and argue with) the version of them that lives in our mind. This erodes connection. Being willing to suspend that certainty and deeply listen can profoundly change the context of your relationship.

Empathy is essential to authenticity. It emerges through a range of capacities – being able to hold a range of contradictory beliefs in your mind at the same time, being able to hold your own perspective lightly enough to genuinely seek to understand another, and firmly enough to integrate new knowledge and experiences without losing your own. Polyphony – the willingness to allow multiple voices and perspectives to exist without requiring consensus, is profoundly helpful. Every experience and conversation we have is adding to our own frameworks and beliefs in ways we are often not aware of. The heart of the work for me isn’t just this willingness to accept I may be wrong, and a lack of fear of exploring other beliefs, it’s also about being able to bridge a fundamental tension in how I see other people. There is both a profound diversity, and an underlying common ground to being human. Empathy emerges when we hold these in tension with compassion.

Complexity is one of the hidden faces of Authenticity and Diversity – it deserves defending

Complexity is very difficult for human brains, and we don’t much like it. We much prefer single cause-effect thinking and ‘this or this’ options to systemic thinking and ‘this and this’ options. Hence the vast quantity of memes and concepts widely shared, largely contradictory, and all intended to help guide our attitudes and behaviours in conditions of uncertainty. Complexity is confusing and stressful. We need the memes, the simple concepts, the straightforward protocols. They are the shortcuts that help guide us, over simplifications that function as maps to make it possible to navigate without overwhelm.

The shortfalls of over simplified ideas are all around us – they are like blunt tools misapplied to delicate situations. You should be a decent friend and stick by people through thick and thin but also weed out obnoxious and negative people from your life. Somewhere in the middle lies the messy complexity of real life, real relationships, and your own level of obnoxious and negative impact on the people around you. Over simplifications occur when we are overwhelmed by complexity and retreat to safe platitudes or rigid guidelines, or when we fail to engage with the topic or people with sufficient depth or empathy to understand it.

The New Zealand study has come to be what I term a ‘‘research-has-shown’’ moment in the public discourse, where the results of one study are overextended to reach an unwarranted conclusion.

Steven M Schnell

The risks of this ‘research has shown’ approach are huge. It is a soothing idea and one that is often used in training – I’ve used it myself when talking about diversity in the workplace and myth busting ‘common wisdom’. But it’s so easily a tool that misrepresents complexity and reduces it to something over simplified and destructive.

Complexity has many shortfalls too, too much of it too often leads to decision fatigue, decision paralysis, confusion, shame, and hopelessness. If we can’t find guiding principles in difficult situations we are at risk of collapse or disengaging. This is incredibly important when the complexities are social, and a common dilemma for anyone working or designing interventions in the community sphere. I know how exhausting it feels to pull all of the issues on to the table and try and really grasp the context of problems. It’s tempting to give up and return to ‘business as usual’ even if we know it has serious limitations. Complexity can be too much to deal with and break our spirit if we feel doomed to failure no matter our intentions.

Complexity is also magnificent. It is nuance, shades of grey, texture, authenticity. It is the realness so often missing from curated and risk adverse stories and services. It’s the stories that don’t fit, the diversity not captured by the ‘normal template’ on which our world is built. It’s why we are not cogs in a machine and not replaceable to each other. It is part of the astonishing depth, the contradictions, and the richness of our lives. It’s one of the reasons people love art, which refuses categorization.

All the quotes in this post come from this delightful article analysing the “local food” movement and backlash in my public health studies this week, Food miles, local eating, and community supported agriculture: putting local food in it’s place, by Steven M. Schnell. While it is a very interesting account of that topic, it is also a defense of complexity and the process of deeply understanding the nuance of topics and communities.

What is missing in many of these discussions is recognition of food system participants as fully rounded individuals, balancing many different, sometimes contradictory concerns, and making decisions about food within the complexities of the real world. Any attempts to understand what the idea of ‘‘local’’ means to consumers must not discard this complexity in favor of rhetorical,ideological, and quantifiable simplification.

Steven M Schnell

The approach I’ve found most helpful in my work and speaking is to give value to both complexity and simplification. When I illustrate my presentations and use a combination of text and image, that’s a deliberate choice to help to capture a complex idea or important topic in a way that fits easily into our brain – the meme. Each contains a ‘halo’ of the complex information it was embedded in, but where that knowledge is swiftly lost, the meme remains and holds a place for it. It’s like a process of loops – we dive into complexity, then surface into a place holder – a principle, premise, learning, or guideline that stands in place for it. They are the nutshell ‘key take away ideas’ that lose value on their own, but when presented with the complexity are retained in a way that represents much more complex shifts in mindset and belief than a questionnaire check box evaluation could assess. For example, much of my work in mental health speaking is about humanising the person in pain. It’s not always explicit but is embedded throughout the materials and part of the more subtle shift in how we feel about and engage such people. Mindset shifts are the trickiest but by far the most effective changes we can make, and making complexity safer to navigate is a crucial part of that.

I’ll finish with this lovely one-liner, so applicable in community and health which are often uncomfortable bedfellows with neoliberal ideas of individual responsibility and free markets.

Doctrinaire free traders, it seems, are all in favor of freedom, unless consumers are using that freedom to choose values other than low prices to guide their decisions.

Steven M Schnell

She loves me

When Rose packs lunch for me, she sends with a little container with my tomato slices, carefully salted and ready to go on my sandwich so it won’t get soggy. I’m a very, very lucky person. 💜

Image description a sandwich with the top slice removed, showing ham, cucumber, and tomato slices. In the background out of focus is a blue lunchbox with yogurt and a banana.

Sashiko and visible mending

Image description a child’s long sleeve purple top, with a round green floral patch in the middle of the back, sewn on with many lines of blue stitches that radiate out from the patch. To the right is a small box of sewing supplies.

I’m healing well from the gallbladder removal. I’ve been hand sewing while recovering. This technique is called Sashiko, a Japanese form of embellishment or mending. I love visible mending, it’s a beautiful way to extend the life of garments and reduce waste. The little shirt above is Poppy’s and had a hole at the back. Below are some jeans I bought from a local op shop which are comfortable but not a colour I like to wear. It’s a very wabi sabi approach to consider imperfect and transient things to have great beauty, and to take an older, damaged article and elevate it through care and love to be considered more valuable than a brand new one. I find the concepts deeply soothing.

Embellishments also help me to see garments differently, they take on more detailed form beyond their use as clothes. I begin to appreciate the fabric itself, colors and patterns, the cut, and quality of the stitches. Not having to mend clothes is a luxury, which means when I do it’s pleasurable. I am not volunteering for anyone else’s mending however!

Image description a pair of pink 3/4 leg jeans, with two embellishments, one at the knee and one at the hem.
Image description a closer image of the knee embellishment. A circle of navy blue denim has been covered in many lines of thick white stitches covering a much larger square of fabric.
Image description a closer photo of the hem embellishment. A light and dark blue denim are patched overlapping with a rectangle of white and light blue batik cotton. A repeating circular pattern of stitches in red is binding them all together.

Shut up

When the world is built on principles that make pain private and unspeakable, anyone in pain feels alone.

When those in power make the rules that hide their indiscretions, their avarice, and the suffering left in their wake, it is literally unspeakable. The nature of oppression is the way it can not be spoken or at times even thought.

The average customer satisfaction rating is above the national guidelines which is a fantastic indicator of success. Within the dissatisfied customers are a smaller, highly diverse group of people so harmed and traumatised they would rather suffer great pain and risk terrible harm than be exposed to them again. We do not collect that data. We not speak of them.

Friendship is the building block of every community, an elastic concept applied to the closest confidant and loosest acquaintance but all with an implication of acceptance and mutuality. It saves us from impersonal formal care, and it fails us in ways too painful to put into words. It is at once more robust and more frail than we think.

Therapy is at times merely an expensive process of transferring trauma in contained doses from one person to another.

Bitterness is almost beautiful – Wendy Orr

I cannot speak of your brutality and of your tenderness at the same time, people hear with only one ear, listen to only one story.

We do not speak of the truly horrifying things. And when we do, we mouth platitudes and vomit rage and break spirits.

After all these storms and tears, I must go home, and face the truth that no one dies of loneliness. More’s the pity – it seems the obvious solution.

On the floor of the therapists’ office I die and come to life. I break into a thousand pieces and walk out again with my face almost but not quite put back together. Pretending to be human with everyone else pretending to be human.

It would be funny if it wasn’t so absolutely f#@$ing sad.

It nearly destroyed me last time. The moment I feel blamed I’m leaving.

Such perfect companions. You betray me and I betray myself, and all who love me. We are always fated to find each other, through history and all of human life, a pairing that inevitably meets over and over again.

Good intentions are not enough. They are all I have. My hands are empty. The ones who did such harm while doing their best, the unquiet ghosts.

Sex and rape look pretty much the same if they are described in writing with no attention paid to the ‘customer experience’. My health and hospital records also probably read quite well, good care, good outcomes. So what’s the problem?

But how was the play, Mrs Lincoln?

Trauma creates a form of diversity. Brains are literally wired differently and it’s visible on scans and tests.

We all want to be virtuous but we don’t like risks and we don’t want to be uncomfortable.

Sometimes I hate myself so much it’s hard to breathe, speak, feed myself, stay alive. Yet it’s like a safe cave for me, when I step outside of it and see the vastness of the pain and betrayal that’s waiting for me, I don’t know how to bear that and I turn back around and hide in my cage. It anchors me.

How can you be so mean to someone so meaningless? – Batman Returns

Stockholm syndrome applies in some degree to every human in existence. We all need to eat and so we all need to lie to ourselves. All our captors are kind and brutal in turn. We empathise with them.

I was not punched or raped. My trauma is not trauma the way we think of it, my scars are self inflicted partly out of a craving for scars, pain I can see. Yet I am a freak, different, awkward, unlovely, excluded, and painfully unsubtle about my feelings on the matter.

I first wanted to die when I was ten.

People reassured me the nightmares would go away when I became an adult. They were wrong. They started to ease off when I came out at 29.

I spent the precious hours after my daughter was born sobbing and unable to move, strapped to a table while vapid doctors sewed me up like a lump of meat. Something in me broke that I can’t mend. It remains stubbornly misshapen and brutalized as a monument to an act of harm that would not even be remembered by the white coats who perpetrated it, utterly secure in their certain good intentions. Only I know if it was sex or rape. They didn’t ask. It wasn’t sex.

I have only ever wanted to belong. We do not create mental health resources for the oddballs, like everything else they are written for the normal, white, cis, straight, middle class, able bodied who have gone through a rough patch and just need to hold on for things to get better.

The very best part of my days is the night, sleeping next to my child. The smell of her hair, warmth of her breath. I soothe the growing pains, calm the bad dreams. When she is content my world is at peace.

Everything anyone has ever thought is true – Phillip K Dick

You’re a hopeless romantic… It would be funny if it were not serious. – Ray Bradbury

You’ve got to jump off cliffs

All the time

And build your wings

On

The

Way

Down.

– Bradbuy

Blessed with more days

I’ve made it through the surgery. The procedure itself went smoothly, the post op care was a mess but I’m happily home now and ensconced on my own couch with books and films, dreaming of the next steps, the days on the beach with my daughter, moments of closeness with friends, projects and opportunities waiting for me.

Image description: three large ruffled pink poppies, flowering among green leaves and purple irises next to a black rail fence.

I’ve got the books Frida Kahlo at Home by Suzanne Barbezat which is gorgeous and embeds her artwork in the context of her life and philosophy, and Her Husband- Hughes and Plath: A Marriage by Diane Middlebrook which is surprising, dark, and clever. Poppy is still destructive to physical books so these days my library is mainly on my phone. Reading physical books is a kind of luxury.

The garden is in full bloom. My people are alive and well, I am alive and healing. The world is beautiful.

Transforming the forbidden

This blog has been a curious project to understand. I’ve always related to Stephen King in his book On Writing where he describes thought dumping his first drafts then sending them to close readers who help him understand what he’s written so he can edit and shape the work into something coherent. Every year or so, I find myself reflecting on the role this blog plays in my life, why I’ve written it, and what I’ve written.

I started to share publicly, to advocate and humanize and in that respect I feel a sense of peace and accomplishment. Things that were once my dark unspeakable secrets have been put into words, images, poems. Given context, embedded in community, spoken aloud. I have made a platform from it, tackling the difficult topics, confusing diversities, and isolating traumas. I own those secrets now and wear them in public. Yes, I’m strange and different, and this is how, and this is why, and this is our common ground – that we are all in some way strange and different, and that we are all human and often longing for the same things from each other.

I’ve learned more words to describe what I’m doing here: intuitive artist, social practice arts, discovery writer and one of my favorites ‘pantser’ (those who write without plans, but fly instead by seat of their pants).

I’m struck by how many people in my world know things about me and my ideas I can’t see how I would ever have found a way to share otherwise. I’ve used this blog to bridge many gaps between my strange self, my largely invisible experiences, and my community. Always building connections in some way.

I’ve documented parts of my life, both the carefully researched and constructed reflections, and the beautiful or sad trivialities that make up the rich detail of a life. I’ve aimed to make myself human, and public, at a time where we don’t talk about multiples as human but as liars or freaks. I have a soft spot for freaks and embrace freakishness in my own way. We’re all freaks, and that can be so lonely, but it doesn’t have to be. Connection, empathy, bridging gaps between us are easier when we are alike, but possible nonetheless. It’s less about finding similar people and more about learning to listen and be heard. That’s a magic I’ve finally begun to grasp, after so many years of feeling different and looking for people like me. It’s not about ‘people like me’, it’s about people who are listening, the way I’m listening to them. It’s about love.

I’m going into surgery tomorrow. I strongly dislike the feeling of general anaesthesia. Falling into the void and having no control terrifies me, I fight it and the more I fight, the more powerless I feel and the more terrifying it is. I can only submit and rest in it when I’ve made my peace with death. This year that is hard. I’m not at all ready to die. My eldest is fighting with me and my youngest is so young. I want to be here with every breath in my body. My Grandpa was not ready to die either. Yet he is gone. My friend Leanne didn’t go to bed at peace with Death, that last night. Narrative arc, fairness, or the power of love are no armour against the fragility of life. Peace is hard to find.

It is what it is. Despite all the broken and unfulfilled dreams, the incomplete artworks and friendships that never quite ripened into closeness, I’m proud of what I’ve done, who I’ve become, how I’ve lived. I’m proud to have been part of your lives, all of you I might never otherwise have met or known, all of you who know more about me than our meeting would ever have normally permitted. The rules about public and private life are largely arbitrary, unthinking, even brutal. Many can be summed up simply: joy is to be shared, pain is private. How stunted our lives are when we obey those rules, when we suffer alone and come to believe we are alone in pain, the only person to have felt what we feel and wrestle with what’s drowning us. More so for those of us who are more hurt, or who’s entire lives are deemed to be suffering: disability and illness of which we should not speak.

These things are universal. Our fragility is part of what makes us human – our capacity for loneliness, grief, despair, even self hate. Our yearning. Our fear of rejection and abandonment. Pain is best bourne in connection. Somewhere out beyond the fear of inpropriety or oversharing, is the transformation of the forbidden experiences we feel most taint us, into the universal threads of pain, courage, humility, and hope that connect us.

It’s foolish and maudlin to think of death, gallbladder surgery has minor risks. As a multiple I switch and fall into voids I can’t control or explain many times a day. But it is what it is. The world has tasted sweeter this week. I’ve looked more closely, soaked it in. Sleeping beside my daughter is one of the most beautiful experiences of my life. My garden is in full Spring bloom, spectacular and luscious. My darling Rose has cooked and cleaned and held a space for me in a way that soothes my heart. I’ve finished admin, touched base with my people, cuddled my cats, finished reading my book and downloaded many more to start.

I never know quite what I’m doing, at the time, only in reflection do I glimpse behind the curtains to the needs and longings and beliefs that animate my actions. I’ve fallen far short of my hopes in many ways. But of what I’ve made here, I’m glad. In a world swamped by sales funnels, content creation advice, and strategic business cunning I’ve been as useless and embarrassingly sincere as any poet. I’m glad to have touched your life, fellow poet, freak, artist, madman, flower grower, dreamer, and/or reader. Until tomorrow, with great love.

Art speaks for us when we are without words

A friend recently went through a huge ordeal, their kiddo had been suffering from debilitating headaches and was suddenly diagnosed with a brain tumor and scheduled for surgery.

I live on the other side of the world. You want to be there, to hold hands and make food and crack jokes and bring tissues. Everyone feels helpless and mute.

The surgery was a success and the long rehab is going well, albeit tough. I thought about the workshops I’ve run with people who’ve been marginalised and harmed and ignored, the power of a zine to bring together deep insights and bypass all the rules and blocks and limitations that inhibit us. So I mailed a gift pack. An example zine of my own, a brief set of instructions. And a zine I created based on online photos of the experience.

This is one of the simplest styles, a single piece of paper, cut along the middle, folded into a small booklet of 8 pages.

Sydney sent me a zine in return, which was beautiful and made me cry. These moments of connection are precious and healing. Art can help make it possible. I hope you find a way of reaching out too.

Making friends with failure

I have spent the morning in my local hospital going through pre-op assessments for my gallbladder surgery next week. I am nervous and excited and relieved and have that vague niggling worry that perhaps I’ll somehow not make it through the procedure and this will be my final week alive. Anxiety is so dramatic!

But I’m in good spirits, yesterday a friend kindly helped me move my things from the wonderful office at SHINE SA to my studio. I’ve been planning this since I moved into my bigger studio space, but needed moral support and assistance and every time I made arrangements something tricky happened at the last minute. Well, not this time! We packed up a whole lift full of art and project files and filled up a desk at the studio to be sorted through later.

Image description: very old style wooden lift half full of boxes and bags of canvas paintings, books, and stationary.

There were two major challenges to work through, the first is that I have mixed feelings about the move. It’s absolutely the best next step, having everything in one space will streamline my work processes and make life much easier. But I love the folks at SHINE and will miss them, and my failure story is easy to trigger with anything I’d hoped to do but couldn’t bring to fruition, like some of my business plans during the residency that took a back seat when I was needed at home.

Our second moving challenge became apparent once we finished unpacking everything into my studio. No keys. They were on the bench in the lift, which is collapsible and was bumped at one point. Meaning they dropped unnoticed into a bag or box. We eventually found them in the back of a magazine folder full of hand made book making instructions!

I alternated between packing and crying, which I didn’t particularly want to inflict on the lovely staff, hence the perfect timing of a public holiday. Fortunately my helper was an art therapist who was excellent at distracting me whenever I started to fall down the failure well!

If you’ve come through childhood adversity you probably have a failure story too, created from all the bag memories, firewalls you couldn’t reach, times you lder yourself down or were failed by others. Most people who’ve been mistreated or abused, especially by someone they cared about or looked up to, have strong failure stories about not being able to find a way to stop it. Unemployment, especially long term, can deeply grove a sense of social rejection, exclusion, worthlessness, and failure. Gifted people who struggle to feel they’ve lived up their potential, people who had plans derailed by illness, or who found disability or mental health struggles meant no one saw potential in them often have strong failure stories too.

My failure story is incredibly strong and like most people’s, very painful. For me it’s particularly around work, fueled by misplaced shame for needing welfare and years of being forced to apply for unsuitable jobs. It’s taken a very long time for me to understand my failure story means I need to mindful of certain emotional risks I might want to take, to gather support around me in some settings. And that it in no way speaks to my competence, capacity, or worth. It makes certain things very hard for me and fuels high anxiety and overwhelm in some situations, but in many others it’s a minor background noise, aquiescent as a sleeping cat.

Most of us have a failure story of some kind, but in work and business we are strongly encouraged to keep them hidden. This creates a toxic culture because if no one is safe to fail or even feel like a failure, no one can risk or be vulnerable. Without vulnerability or risk there’s little creativity, innovation, or human connection. Safety and failure are intrinsically linked.

Considering my art and community development work need creativity, innovation, and human connection, I’m learning I need to make friends with my failure story rather than ”recover from it” and put it behind me in work settings. It’s actually a valuable part of my history and the foundation of some of my skills – if you’re building rapport with someone is that easier to do with a human who has failed, or someone shiny and perfect? It’s such a common mistake to hire a shiny person for a job where you need a human. And such a common misunderstanding for people like me to think we need to be less human and more shiny to be professional. In some ways it’s actually a useful resource, a point of common ground to help other folks who are struggling to feel safer around me and to help me design and implement resources and engagement approaches that click with them. That’s hard to do for folks in strife if you’ve never been there yourself. Shame is destructive but humility is valuable, and we rarely learn it from our successes.

Ink Painting: There is no bridge

Image description: Blue, purple and black ink artwork depicting a dead elderly man in a boat full of flowers on a river, with a young girl on a swing anchored to the boat, and a woman mourning on the riverbank.

My Grandpa’s committal service was beautiful and painful, lovely and heartbreaking. I read a letter by Rilke exhorting the mother to embrace death as an essential aspect of life, part of a whole that is richer for it. Rilke was an astonishing poet and letter writer, full of passion and depth. Looking for a suitable poem to read at the service was good therapy.

We painted this today, with Robert Oster’s Blue Black ink. The text along the riverbank reads “There is no bridge between us where you are”. The ink is watersoluble so the brush and pen work is completed in layers, drying then reworking the water to create depth. The color is stunning, a dark purple that bleeds blue.

Rebellion and Glee

Our lives are easily stolen from us, consumed by grief or given up to ideas that give nothing back to us. It’s been a strange week, in an odd way a wonderful one despite sadness and sickness. I’ve been playing with choosing what I want to do and being less ruled by anxiety and duty. I eat what I want to eat which is frankly a bizarre and liberating rebellion for someone with chronic illness – which is always targeted through diet by doctors and witchdoctors and people you meet at the bus. I’m enjoying a book by Laura Thomas, Just Eat It. Slowly overhauling my relationship to food is sumptuous.

Image is of multicolored flowers

My friend brought me these stunning flowers when my Grandpa died. I got stuck having a transvaginal ultrasound recently and added to quality chocolate to the indulgence. I’m fiercer and enjoying life more, the more I push back in tiny ways against the self sacrifice that’s been so ingrained.

Image is of an orange beetle painted onto a white skinned arm, resting on a black and rainbow knitted blanket

Face painting and glitter tattoos have started up again with the Spring. I’m doing more work in my diverse communities of interest, particularly LGBTIQA+, and disability. It makes my heart happy.

Image is of a 3 year old child in a rainbow hat feeding an ear of corn to a capybara

Poppy and I are back in our grove of regular adventure days. Today we went swimming, then scooting in the park, and lastly painting. Recently we went to circus skills Training With Cirkids, then Gorge Wildlife Park with our friend who works there.

Image is a self portrait of Sarah’s face, in bed u tucked into a purple blanket and looking unimpressed

I’ve been sick with something not yet identified, very painful, but not infectious. Grateful for my laptop so I can study in bed. Grateful for Rose who works around me and cooks me wonderful meals.

Image is of a cupcake in a green case with white icing

It was a friend’s birthday party recently and I indulged in baking. These are lemon meringue cupcakes, made with vanilla sponge cake, stuffed with lemon curd, and topped with meringue icing. They are delicious. I got the ultimate cook compliment when a crew of folks at the party who didn’t know I’d made them dragged each other to the plate and rhapsodized while devouring them. I have brought a large plastic tub from the local hardware store so I can easily soak my trays, which makes the after-baking cleanup slightly less onerus.

Image is of a yellow cupcake with lemon curd in the centre and white icing, cut in half. It’s on a white plate with a decorative floral border.

I’m back in the swing of study, this time going down the rabbit hole of climate change and environmental impacts on health. It can be brutal at times so I’m using my standard approach – find the people I love and break up the depressing or awful stuff with things that strengthen and encourage me. I’m not sure what I’m getting into next year yet, but I’m determined I’ll be doing something. It’s far too fantastic to walk away from.

Parenting with chronic illness

Each gallbladder attack I have is taking longer to recover from. My fibromyalgia flares and I feel like I’m recovering from getting a good kicking. I recently learned that I’ve been cutting too much fat out of my diet to try and prevent extremely painful biliary colic episodes. The extra low fat diet left me with headaches, exhaustion, foggy brain, and chronic pain. Bumping my fats back up has been quite magic and I’m feeling much better. I’ve been scheduled for surgery to remove the gallbladder next month.

Image description: A young child on a park swing. There are trees, lawn, and bark chips. A small green bike is lying on the ground by the swing.

In the meantime I’m muddling along. I used to be so afraid of this place: sick and trying to parent. It is hard. It’s really hard. I’m so incredibly fortunate to have good people around me, that network I put effort into building has saved my life. It saves me when I can text a friend in distress instead of crying in front of Poppy. When there’s someone to pick Poppy up from the ER so I can be treated. When our daycare provider lets me arrive late while I try and coordinate a crisis. My world has flexibility, care, accommodations that ease the sharp edges of my limitations and soften the harshness of the things I’m dealing with.

This creates capacity I wouldn’t otherwise have. So rather than merely the nightmare stories I feared, mostly Poppy and I muddle through. Rose takes her so I can rest or nap. I walk her to the park so she can ride her bike. We snuggle under a blanket with a hot water bottle and watch a movie together. We do crafts or painting on the dining table. She plays in the back yard while I hang washing.

I have a collection of low energy/high pain ‘tough day’ activities like this I can enjoy with her. And I’m still working towards the lower daily effort/systems and routines/life on the easy setting changes I started making last year so that my home and work is efficient, sustainable, and frees up as much energy as possible for the things I’m passionate about – such as parenting, care giving, socialising, adventures, and creativity. With thought, planning, and support, it’s actually still wonderful to parent even in a rough health time. I’m incredibly fortunate and I love her to bits.

Inks have a language of their own

Watercolors are wonderful. Light fast, easy to transport, to layer, just such a good idea. I love them. But… my heart goes back to ink. I started with ink, when I was so sick I could not shower myself. I started when I needed something to speak for me instead of blood. I was too frozen with perfectionism to make art. But I could still write, poems with my fountain pen. So it was a smaller gap to leap to making art with it, little lines and dashes to sketch the shapes in my mind. Designs I thought were just place holders, capturing images that would later be done properly, at a larger scale, using a ‘real’ medium.

Yet I’ve learned to speak in inks, in snatches, small scale, moments between dreams, rough designs that somehow hold a little of the emotion I felt.

My week has been beautiful, heartbreaking sad, hard, choked. I took some time today to play in my studio, swatching my ink samples. I like to see how they write, how they handle in a brush, how water changes them. It’s unpredictable, colors can split into components, purple may bleed blue or pink, green may blush peach. My favorite ink, the teal I paint in most often is incredibly unusual. A combination of waterproof black and watersoluble blue, the lines stay black but bleed blue when touched with water. It’s spectacular. I’ve been painting with it for many years and I still adore it.

Swatching like this is like learning a little of the language of each colour. Its range of tones and value, how it feels. Some are watery, some oily. Some read almost black at full strength, others never do. When I’m working on a project I can lay these out and see who speaks to me, who pairs well.

Commercializing a creative process is fraught. Business is about something that can be replicated reliably. Finding the right kind of jar to hold a light in that won’t harm it can be such a challenge. There are days and weeks I am still frozen until I tell myself to create for myself and no one else, to make things that are useless for any purpose except the song and the sadness in my own heart.

Image description: Business card sized papers painted with inks in every colour

Death of a grandparent

Tonight we had a picnic dinner in hospital to visit my Muminlaw. Poppy was the life of the party, leaping off a bench into my arms, helping to rub Nana’s sore feet, and clambering about like a monkey. It is very precious to spend this time together.

We had only been home a few minutes when I received a call that my grandfather has died of a heart attack. I drove up to the hospital to sit with him and people in shock. We did not get time to rub feet, tell stories, or be close. In fact, tonight was the first time I’d seen him in ten years. He was not a queer friendly man and I didn’t need any more relationships that crushed me. When he got sick recently I’ve been behind the scenes, supporting my mother as she struggled to arrange care for him. I planned to visit shortly, but not with Poppy. She’s facing enough sad and confusing situations already.

And just like that, his book closes. I have many wonderful childhood memories of him. Some bad later ones. We last properly spoke at the funeral for my grandmother, whom I loved dearly. It was a rare moment of clarity and connection and I knew it would likely be the last time we were close. He was uncharacteristically tender and it’s a treasured memory. He’s my last grandparent to pass.

Life is strange. His story is neither triumph nor tragedy. He was complex, a devoted man, also a bully. He was lonely. I have been painfully aware of how leaving behind all these people has torn great holes in my life but I don’t think I have realised the holes I’ve left too, that I’m as irreplaceable to them as they have been to me, these people I’ve loved.

I wish everything had been different. I wish he’d had a better last few years, a better death. I wish there’d been more between us. I wish something as stupidly simple as who I love hadn’t been a problem. I waited until my Grandma died to come out at 29. Homosexuals were denounced from the pulpit at her funeral. I never gave Grandpa the chance to lecture me about it. I waited until my Father didn’t know where I lived. I lost my godparents, my cousins, my childhood friends… my conservative little world burned down around my ears for me to survive, and while I’ve rebuilt as best I can my heart is still broken and deeply scarred.

I’ll miss Grandpa. I’ve been missing him for years. These people I love from far away, their lives don’t stop. They get sick, they age, they die. I built my life in the ashes of my childhood. There’s wastelands of pain between.

We sat by him together tonight, telling good stories, laughing at old memories. It was fitting, heartbreaking, dignified.

It’s 2am. I’ve crept into bed next to Poppy and Rose. I have the memory of my hand laid lightly on his still chest. I’ve brought the fourth murderbot ebook for company. The house is dark and quiet. I’m full to the brim with sadness. His life has ended, he is now remembered in stories. I wish there was a better ending. I wish love was easier for people.

Seven years with Rose

There is a curious thing about getting to know a person. We often think of it as a linear process, a step towards them, slowly getting closer. More truth, more unfolding of their history, more revealing of their self.

Maybe this is true for the first year, but after that… There’s change and flux it’s hard to account for. It’s not like getting to know a book. It’s more like getting to know a river. Some seasons flooded, others maybe dry. Riverbed changing course. Unless you understand the changes, you don’t really understand the river, only a snap-shot of it. How the river was at that moment, in that time. It’s real but it’s limited.

Rose is still who she was 7 years ago when we first met. Her passion for adventure, creativity, love of children, and zest for life remain, like flags flying high. They are the heart of who she is, whatever darkness, chaos, or pain storms through her life.

She’s also changed so much, shifted course in ways I hoped for and others I couldn’t have predicted. I find, seven years in, that I’m still surprised, sometimes confused, or delighted by the process of unfolding, growing. She’s different because life has happened – birth, death, loss, wins. Different because she knows me, and in seven years we’ve woven each other into the heart of our worlds, which has changed us both. Knowing her remains a principle rather than a goal I can achieve, a process of listening and asking, holding lightly to my memories of who she was last year, last month, giving her space to keep changing. It’s surprisingly hard to do. But so astonishingly rewarding.

It’s easy at the start, before you’ve let each other down. It’s much harder when pain dims everything and you’re both stumbling through how to heal wounds you didn’t mean to inflict. And yet, I sometimes wish I could show her to you in those moments. Because the things I can easily tell you about – her bright spirit, her beautiful smile, her amazing crafty arty skills, they are things everyone can see. Everyone who knows Rose has seen her amazing capacity to care for children, her wonderful adventures. Few have seen her courage to face down her own demons, to confront terrors, learn hard truths, accept losses, and take charge of her life. Her trauma therapy has been a full time job and her incredible bravery and willingness to dive into the most awful experiences imaginable in order to deal with their impact on her life and family is frankly inspiring. Watching her fumble through painful conversations to find the magic to unlock hope and connection makes me love her far more than the qualities any idiot can see. Her devotion to our family is spectacular and we would be devastated without her. In the incredibly dark times we’ve faced of death, loss, and serious illness, her humor and tenderness remain like bright jewels. Like stars, they shine only brighter.

She is a tree, savagely scarred, very beautiful, providing shelter. Her roots were once shallow but sink deeper each year. Watching her soothe our crying child, create magic learning spaces for friend’s kids, and wrestle to really hear someone who’s hurting because of her in some way – her integrity, and quiet strength are foundations of our family, the timber of the boat we sail in. I am blessed to love her.

Damn gallbladder

Hanging out in the ER again tonight, incredibly lucky to have good support from staff and friends and family. I’m poked full of holes and apparently a vampire’s nightmare but feeling much better than I was a few hours ago.

Image is of a white woman with short brown hair and a wry expression, in a hospital bed

I concluded my casual position providing support to NDIS recipients with Uniting SA today, which I would probably have more feelings about if I hadn’t started having a gallbladder attack in the middle of my last meeting! I loved the work a great deal and will miss the team.

I’m continuing working with TACSI in their chronic illness project and finding it grueling but incredible. My studies are also going well, my current class is about policy advocacy which I have adored. We had a 5,000wd group assignment recently graded at HD which was satisfying.

I’ve decided to take things slower during September and give myself some rest and recovery time. I’m reading some great books and looking forward to more studio and family time. Frankly right now I’d be happy with a week on the couch in front of Netflix!

Family traditions

We planted this simple tripod made of stakes and string at Easter, and have been harvesting snow peas all through the middle of winter. The colors are richer purple the more sun they are exposed to. Rose found the seedlings and was tickled by their unusual color, they certainly taste delicious.

In a small way they are emblematic of values in our family: a delight in the unusual, the desire to plant and reap, an appreciation of simple joys, the willingness to try and fail and try again. Easter is a mixed time for us with our histories of painful religious experiences. Making private space for those and giving Poppy traditions of family, planting and harvest is one way we are navigating our uncomfortable heritage.

At times it takes great courage to continue to live in a world that has dealt so much pain and uncertainty. We work hard to weave what Poppy needs: stability, love, compassion for imperfection, joy in each other. From courage comes life.

Love, by the water

Endometriosis, adenomyosis, PMDD, and PCOS is an extremely unhappy combination of troubles. For me it means very heavy, painful, unpredictable periods that often trigger severe depression and sometimes suicidal distress.

I’ve spent most of the last 2 days in bed with a heat pack. Today Rose took the lead and set up a beautiful family trip for us all. She made savory muffins and took us all down south to a beautiful beach for the afternoon. I went for a gentle walk in the surf, Poppy collected rocks and shells, and we all enjoyed watching a seal frolic in the light rain.

Image is of Poppy, aged 3, wearing fabric rainbow butterfly wings and running along a beach.

It was so joyful and relaxed and a safe space to just be. As the rain fell lightly into the shallows where I walked I wept. My heart has been full of doubt and confusion and heartbreak lately. Watching the light catch the water and the foam on the sand, I’m so grateful.

One of the things I fell in love about Rose was her ability to create these beautiful adventures: inexpensive, simple, and so connected to the moment and the environment. I’ve often yearned for these things but when I’m sick or distressed I struggle to arrange them. My initiative is paralyzed, so I yearn but cannot act. I recall many days when I lived in my unit by the beach, longing to go down to the water and unable to. I could never have made it to the beach today, but with her doing all the heavy lifting I could be swept along to something beautiful and nourishing. I fall in love all over again.

Happy Birthday Poppy

I took yesterday off, mostly. Apart from some admin and a therapy appointment that made me want to sleep for a week. I went back to bed and read some book and listened to music and it was glorious. Tuesday night at midnight I submitted a 5,000 word group assignment of Policy Analysis and Advocacy. And the weekend had the wonderful birthday parties for darlings Poppy, who turned 3, and my adorable niece, who turned 1!

I had a rough week last week and some kindly folks reminded me that baking cakes was only for people who felt up to dealing with the dishes, so Poppy’s gorgeous octonauts cake is a couple of supermarket mudcakes and a lot of tasty buttercream icing. It was a fantastic day.

Three is a special age, and somehow Poppy feels so much older so suddenly. I’ve been out a lot lately and missing her. The sweet cuddles and silly games we play when I’m home are the most wonderful things in the world. She is pure magic.

Public Health Quote of the Day

I’m in the final days of a group project report for my advocacy class. I hated this project for the first several weeks when I couldn’t get a single person in my group to respond. Now, in the final days, with 4 separate contributions to knit together cohesively, some idiosyncratic (mis)interpretations of the brief to work with, and a lot of references to get into one referencing software, I find myself surprised to be enjoying it. Our report is vastly different from anything I’d have written myself, including our choice of topic, and yet it’s been fun to let go of the usual goal of top grades and instead focus on engaging and supporting and the usual herding-of-cats that is pulling together a group project.

Tonight I am reading up on Advocacy strategies and I laughed out load at a quote from pg 16 of The fight for public health by Chapman, S., & Lupton, D. (1994).

Looking at the vast literature on health promotion programmes, it is almost as if there is… an inverse analysis law operating in public health: the more trivial the intervention, the greater the research interest; while the greater the potentional for population-wide effect, the scarcer the analysis.

Simon Chapman

Complexity is tricky, folks, and we don’t like it much. I was inspired recently by a conversation about one of the biggest challenges in health is trying to move from linear (one cause, one outcome) to systemic thinking (multiple causes and multiple outcomes including vicious or virtuous cycles). Systemic thinking is hard when you are used to linear, like going from juggling two balls to ten. But in a way it’s also much more intuitive, we know that the context of a person’s life is crucial to their health in multilayered ways that go far beyond the reductionism of simple cause and effect, even in the realms of trauma.

I do love this work.

Everything is happening and a lot of it is on fire

There are times in my life when things seem to reach a quiet kind of calm. Perhaps I’m on uni holidays, my main projects finished… I’m looking around for the next thing to do, hanging out my shingle, contemplating my book or the next art exhibition. Sometimes it turns out to be the eye of the storm and all manner of hell starts raining down on me. It does make for a hard time scheduling my life.

I had a week like that recently. I’d gone for a job, not heard back, moved on and put in other applications. I picked up the TACSI project. Then got a call and offered an entirely different job but still great work, so I jumped in.

The week I started the new job, I spent a night in ER in a pain crisis being pumped full of fentanyl. Follow up ultrasound the next day gave me a new diagnosis of gallbladder disease. I have one very large stone, a very inflamed gallbladder, and a lot of, and this is apparently the correct medical term, ‘sludge’. I’ve had to radically alter my diet and I’m in a fair bit of pain most days. I have appointments coming up with a surgeon.

Okay, curve ball but I’m still in with a chance.

I went to a medical which turned into a ptsd nightmare I’m still dealing with.

Horrible, but I’m still hanging in there.

I tried to access Disability Employment Support and spent weeks jumping through pointless welfare hoops to prove i was able to do the work I’d already been doing. The support turned out to be far harder to get than the job was.

Infuriatingly stressful but I’m nothing if not stubborn.

I got home from day one of induction to learn that Rose’s Mum (foster Mum) has been diagnosed with a particularly aggressive lymphoma and is starting chemotherapy immediately. Round one of chemo kicks her around so badly she winds up in the ICU incredibly ill, at which point I cry uncle and take a week off work plus put Poppy in daycare, so I can do visits, support Rose, cry, and catch up on laundry.

I’m in a group project for my studies where no one would start work until the final week the project is due, which is now.

I just had emergency dental work on a decayed tooth because it’s part of a TMJD flare I’m in that’s so bad I have tinnitus from it.

I am still standing dudes. But August had better get easier.

The new job is as a Lived Experience Mentor with Uniting SA. It’s a brand new, experimental pilot program, working to create an interface between a dedicated team of employees and a group of folks receiving support through NDIS funding. The people we are supporting, and the team are the clear highlights of the work. The administrative nightmare I’m in of multiple forms of reporting using different measures, rates, and software between work, NDIS, and welfare, is considerably less awesome.

So, this is me, doing my best at self care, advocacy, scheduling, caring, and figuring out what I can eat that doesn’t make me want to die. Don’t call me, I’m not in.