Jay is trapped in bed

We need urgent help

Image courtesy of Image by Николай Егошин from Pixabay
Image description: large house fiercely on fire in the night, guttered with the windows burned through

Context:

Updated list:

More details:

In Home Safety Issues:

  1. Raised by RN
  2. Raised by Support Worker
  3. Raised by Jay
  4. Verified by Occupational Therapist – pending

Current Status:

I need 2 staff 24/7 with Jay and there is nowhere in the present home for them to sleep, and no separate spaces for them to have downtime. Due to severe sensory issues they also need to be able eat away from Jay, as most food smells are highly distressing and many cause meltdown/shutdowns.

An occupational therapist visited yesterday morning for staff training with safe use of hoist. Could not proceed,  Jay was in too much pain and then went into meltdown due to overwhelm. OT has shut down use of hoist, shower chair, and commode because of the severe pain Jay is experiencing. Given we don’t know the cause of the pain, we are risking potential severe injury to them if we mobilize them with the hoist.

Jay spent the weekend in the local public hospital ED. We called an ambulance for them when their pain escalated into crisis with symptoms mimicing a heart attack. Jay has no ambulance cover – we have promised we will cover it with our donations fund. (THANKYOU ALL!) Edit – wow it turns out NSW has different rules around ambulances to SA and there will be no cost. Awesome! We really need to do something about that here where I live.

Jay was unable to get proper care or assessment in the ED despite everything their entire tried over the whole stay. And I mean EVERYTHING we tried – but that’s a story for another time.

His GP was booked for an urgent telehealth appt over 2 weeks ago but has never called. This is the GP who has not followed up on a highly vulnerable trans client who’s hormone shot is over a month overdue. Apparently this is pretty common for them – can’t even blame COVID19.

Trapped in bed

Trapped in bed at present without capacity to get into their wheelchair. Jay now needs 2 staff available 24/7 to enact pressure sore protocols (need to roll them every 4 hours and apply cream to skin) – we think – we can’t yet get anyone into the house to tell us! Jay’s skin has already thinned badly due to a long time trapped in bed while abandoned in their home – also a story for another time, but I can tell you it’s been a really bad year for Jay.

We urgently need a GP for a wide range of assessments and referrals related to chronic and severe neglect.

We also have immediate medical questions we are not qualified to answer and we need a GP or someone trained to guide us!

We need from a GP: Immediate:

  • We need covid tests for Jay and all staff. The ED Jay spent the weekend in was a hotspot for covid but refused to refer or administer tests or medically assess the support workers. This means we can’t take them into places where high risk residents are in lockdown. We need clearance to open housing options or to know housing options closed because we are now infected and risk killing the rest of the residents. 
  • We need medical assessment and advice of the risks of using the hoist to mobilize into the chair, vs feeding someone with severe dysphagia while lying down in bed. 
  • We need to assess, diagnose and treat the pain crisis or provide referrals to those who can.

We have managed to arrange:

  • 9 April disability specific physiotherapist for telehealth assessment.
  • 14th April we have booked trans friendly GP: should be able to provide script for hormone, we can then hire a nurse to administer. 

Jay reports a bad sore throat today and has been feeling constantly very hot then very cold for the last two days despite no fever on the thermometer. This lack of temperature regulation is very concerning given other health conditions. Jay reports severe neck and back pain, radiating down both arms, which is especially concerning because Jay is usually unable to feel pain even if it’s a really bad injury. We are all afraid something very bad is happening medically. We desperately need a disability GP with experience in spasticity – we are making calls and waiting to hear back. If you know anyone – please get in touch with us urgently, my phone is on 24/7.

How to Stand with Jay

Looking for NDIS support workers

I need a couple of new folks on my teams, one in the Western Sydney Parklands/Mount Druitt area, and another in the Northern Adelaide area. Both folks need people with integrity, disability and mental health experience, and who are taking the COVID-19 health and hygiene precautions super seriously.

Whether you are already working in the NDIS, run your own business, are new to the NDIS but experienced with disability and mental health, want to be subcontracted or employed, I’m pretty flexible. The model can be variable, it’s the person and capacity to learn that I’m focused on. Get in touch and lets see if you’re a good fit.

You will need to have or get a clearance for working with people with disability, full first aid training, medication handling training, and COVID-19 hygiene training (the last one is free and easy to arrange). Your own car is vastly preferred. Lived experience of disability, diversity, neurodiversity, and so on is preferred but not essential.

Dearest Rose

Who is she? This woman I fell in love with seven years ago? We play supporting roles in each other’s lives. We wound each other in ways no one else could, deep in each other’s heart. We live in the brightest hopes and most painful broken dreams of each other. We are each the sun to the garden of the other. She speaks and my ear is a basket gathering petals. She is the child in the night, sleeping under a roof of stars and never entirely comfortable in a house again. She is the cat purring by my chest, full of love. She is a kite that flies out beyond my grasp, never entirely mine. Never tamed or owned or fitting within one role or name or way of being in the world.

She adores me. Her devotion is terrifying. She wraps her life around me, her hopes and belief in the future. She’s tender and generous. She forgives.

She hurts me. I live in the shadows of her wounds, in the debris left by everything that shattered and starved when she was excommunicated from a world where there was enough food, love, safety, and hope.

We dream new dreams. This is the first challenge after loss. Without new dreams there is no life.

We grieve. We learn how to say goodbye, how to let go and hold on. How to let go over and over again in a thousand little ways, like prayers for the future to be worth living for.

We own the scars. We find pride in them, we hold them tightly. We find the world ended but we are still here. We live with our mistakes and we do better.

We reach into the gap between dreams and reality and we do the work that bridges it. The hard and glorious work of being liberated from the past. To expunge the shame and agony. To let the memories burn down from raging fires, to coals, at last to cool ash.

She blesses me with her kisses and her silences, her fingers restless tapping my skin like rain on a window pane or a broad leaved plant. She holds my heart. All my world has been planted in her chest, birthed through her love. She gave me my daughters. She remembers the trees for me. She is my love.

Speaking about vulnerability

Well. So while I was wrestling alligators, fighting off polar bears, and manhandling monster trucks… I tripped and fell hard in my driveway. I’ve broken my left arm and bruised and sprained a few other things. For someone who has been busy with NDIS work driving to people’s homes this has been pretty inconvenient.

ID: smiling person with short brown hair, snuggled on a white couch under a faun blanket. Their left arm is wrapped in a thick white bandage.

It did mean however, that I was unusually available for a short notice speaking opportunity today. One of the reasons my work crosses several areas is to help me stay afloat when encountering difficulties like this- I’m not much use as a gym buddy for one client right now, but I don’t need my left arm working to talk about diversity and vulnerability.

It’s a precious thing to be offered the floor in a space like that, an expression of trust and hope that you’ll help people find the words for what needs to be said. I’m home now, exhausted, pleased, strangely sad in that indefinable ‘post event’ way. I know the real work starts after I walk out the door, the challenge of holding safe spaces and integrating complexity.

I find myself so moved by our common ground, the similarities in our hopes and struggles to be human whether we are the most fortunate or most destitute. And how unaware we are of each other, but where the blindness of the poor makes little difference to the lives of the powerful, unawareness for the powerful builds the walls that exclude and create so much needless suffering. The burden of responsibility is so much higher, and our need for allies in those spaces is so great. I’m glad to play a small part in humanising people to each other. Our work in that space will never be finished, but I believe each moment counts.

At the end of the day

Curled into bed at the end of the day with my little girl in my arms smelling sweetly of honey soap. My garden is growing wild in the darkness outside, full of seeds thriving and vines twisting and the ghosts of birds long since bones. The fan rattles on, talking to itself. Cats come and go. My bone pen calls to me like rain far away at sea or over the mountains, unheard but felt in some strange sense we have no name for. My Studio is a ship far out at sea with the lights still burning. My little girl radiates the soft warmth of a banked fire, embers safely glowing within her chest.

My work is good. It satisfies me, immensely. A parched place within is soaking in the long steady rains of over 2 months constant work and much more booked in ahead. I’m turning down many opportunities and focusing on my areas of strength and passion. The NDIS support worker is complex, challenging, taxing, subtle, and deeply fulfilling. I feel of use in the world and with the help of my business mentor I am starting to shape my business into a sustainable and enjoyable model, with a balance of creative and intense emotional work. My life is incredibly full.

Rose is out at Amanda Palmer, it was by far her turn and she needed the opportunity, the inspiration, connection, and compassion I’m sure she’ll find there. We both went too see There Will be no Intermission for our anniversary and it was stunning. Such raw honesty, brutal intensity, deft humor, and compassion. Amanda delivered something incredibly dark and beautiful.

Rose, my beloved, continues to wrestle with her old demons. She’s walking a hard road at times with horrendous anxiety. But she’s also stepping into her own work and volunteering opportunities as well as being Poppy’s primary carer. We are all learning how to grow plants from seed together, and she tends a small veggie patch I organised her for Christmas. The roses are stunning in bloom, by far the most luminous is Jude, the rose she chose the weekend I proposed in what seems like a hundred years ago. Sometimes our path is painful but there’s also so much tenderness in it. I’m so grateful to her for the joy and spark she brings to Poppy and I, her joy in the little things, her creativity and sense of adventure. She is utterly ernest in all things and so devoted. I’m hoping she was able to open her heart a little tonight and soak in something precious. She so deserves all the safe, inspiring, dark, raw, and soulful nights in the world.

Helping bush businesses after the fires

The fabulous folks I volunteer with at the Freelance Jungle have stepped up in their own unique way after the horrifying bushfires here in Australia. They’ve put together a new projected called Skills for the Bush, where self employed people from anywhere in the world can register to donate their skills and time to support a bushfire affected small business to recover and grow.

Read more about the great project on the Freelance Jungle blog post Freelancers Helping with Bushfire Recovery, or sign up through the Skills for the Bush survey.

I know many of us are already donating and supporting causes. I also know that many of us feel helpless in the face of the sheer scale of the disaster and how long support efforts will be needed. Participating can be powerful way to reduce the impact of vicarious trauma, so whether you are driving supplies for fruit bats, buying quality face masks to donate to fire fighters, or getting involved with the Skills for the Bush project, doing something sustainable and connecting benefits everyone. ❤

Where I’m going in 2020

I’ve just arrived safely in Melbourne for the LGBTIQA+ “Better Together” conference. (Say hello if you’re coming too) I’m tired and excited and really looking forward to it and meeting all the other amazing folks.

Image description: smiling person with short hair and a bright blue shirt with the image of a kitten asleep under a book and the slogan “Curl up with a good book”.

I have Rose to thank for the cool t-shirt. I’ll be away for 5 days and my heart aches knowing the nights will probably be tough for Poppy. I, on the other hand will probably get a bit more sleep while I’m away. Parenting dilemmas!

ID person in a blue shirt and a child in a yellow shirt tendering hugging each other

It’s been a full on couple of months. Massive bushfires have been destroying huge areas of Australia. It’s an unprecedented disaster with the largest evacuations we’ve ever experienced. The losses are staggering. Some folks are in the thick of it, while those like me who are lucky to be safe are watching with horror and confronting survivor guilt and vicarious trauma. Helping out through donations and community support eases the helplessness and is a small balm to the fury and grief. Sometimes it’s big things, others it’s smaller gestures like taking fruit to the local wildlife carers or joining in a working bee for a local damaged farm. Anything helps to unfreeze, to ease the impact of months of bad news and horrifying casualties.

If you’re feeling paralysed, silent and distraught like I’ve been, you might find it helpful to look for something small you can do and do it. Look for good news, for people’s kindness, and share that too. Walk away from it at times to build your capacity to stay engaged and not burn out.

A lot of people are in terrible pain, facing life threatening conditions, or handling thousands of burnt animals. These are all high risk for trauma, and the survivor guilt of those of us who are lucky can lead us to torture ourselves as if more suffering would somehow help. This is part of vicarious trauma, and things that help with this are connection with community, breaks from it, humor, and keeping a clear sense of responsibility.

It is not my fault, I do not deserve either my good fortune or to be punished. I am a better ally and supporter when I’m not overwhelmed.

The other major focus for me has been my work and studies. I’ve been in an intense process of wrapping up projects and studies and launching new ones.

I’ve completed my grad cert in public health with mostly high distinctions. The mentoring program with Sally Curtis has started and been full of invaluable learning already.

I’ve started in two new LGBTIQA+ representative positions, one on the Consumer board with the Southern Adelaide Local Health Network (the hospitals, rehab facilities and so on). The second with the Freelance Jungle as an admin on the team which supports a 5,800+ online group of Australian and New Zealand freelancers. I’ve been a member and then patron of the group for a couple of years, and it’s a fantastic resource with a great focus on mental health and inclusion. The Better Together conference will help me understand both the needs and resources of the wider community.

Consulting and community development work has been so satisfying last year with a creative health project in prisons with SHINE SA and a peer based research project about systems change for people living with chronic illness with TACSI. I was so pleased to support these, they were both work I’m very proud of and look forward to sharing more about.

With face painting I’ve been getting more work from councils and organisations aligned with my focus around diversity and inclusion, such as schools for autistic kids, or queer events, which I’m very happy about.

I’ve launched a whole new arm of my business, providing independent support work for folks through the NDIS, with a special focus on mental health and diversity. It’s going very well and I’ve found that I love it even more than I anticipated. Being able to cone alongside people in their lives and homes and provide personal peer based support that is therapeutic but not ‘therapy’ is simply wonderful. Like a doula it’s a flexible mix of practical and emotional support, looking towards bigger goals but also very present in the moment.

It’s very similar to the group work I used to do in mental health services, such as facilitating the hearing voices group. I’m part of a small community of practice with a professional organiser and a handyman, and I’m setting up supervision and a network of resources. I’ve been extremely busy with it which was a bit unexpected – it’s taken off very quickly and I’m largely booked already.

I’m also booked to deliver a new series of local creative workshops which I’ll share more about shortly.

My work life is all coming together under an umbrella of creativity and diversity. I’m very passionate about it and excited to watch it grow in 2020. I’m putting applications in for further part time studies to continue to develop my skills in this area, and looking forward to getting back in the studio sometime to pick back up my current project there.

Thank you all for your encouragement and support, it’s taken me awhile to find my niche but I’m incredibly happy to be doing what I am, and feeling very aligned with the values and quality that links my different business areas together. 🧡 If I can support you or your project in some way, get in touch and let’s talk.

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.

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.

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 bad memories, dreams you couldn’t reach, times you let 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.

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.

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.

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.

The little details of a good life

It’s been a hectic few weeks. Tonight I’m finally playing catch up with the ever growing collection of socks I keep ignoring when folding the washing. It’s a peaceful enough job, especially if you have company on the phone.

I recently had a particularly fun evening. Poppy scooped a handful of petroleum jelly out of a tub, and ran shrieking around the house wiping out over everything. Rose was napping in the bedroom so I put Poppy in time out in the bathroom for 2 minutes. She was not impressed about this and locked the door in protest. When allowed out, her hands were too slippery to unlock it. I grabbed a screwdriver but the lock jammed! Fortunately Star was visiting and climbed straight through the window and into the sink like a champion, saving the day.

Speaking of sinks, every evening when we brush our teeth together, Poppy insists on putting the sink plug in and leaving a little pool of water “for my leopards”. I have no idea what the leopards are about, but sometimes it’s best not to argue.

We had a lovely time out at the local waterfall recently. Winter had been dry but it finally rained enough to wet the creek briefly which was fun.

In and around the big things in our lives are these little ones, cooking meals, hanging washing, looking for opportunities to have adventures or learn something new, to wonder or find gratitude and beauty. It’s very hard work but also such a good life, so wanted. The joy is in the details, these so forgettable tiny moments of day to day life. Making a starfish together from playdough.

Chopping ingredients for dinner together. Sitting on the couch with Rose at the end of a long day and holding hands. The little squeeze that says I see you, and I’ve got you. The highs and lows of the big dramas of our lives, and the little bumps and dips of the daily mundane world. They all add up to something incredibly precious. Life lived deeply, breathed into, not flinched from or dulled down.

Here it is, my little girl brushing her teeth and carefully making a pool for the leopards. Washing the same 10 mugs for what must surely be the millionth time. Making time to cry when there’s sad news. A hot cuppa and a journal to write in in a quiet moment. Talking with a friend online. Noticing how beautiful the clouds are, the feel of sunshine on your skin when hanging yet another load of washing. A stem of jonquils from the garden, filling the whole house with perfume. The last winter rose and the first winter lily. Going to bed at night with a very good book and a very fluffy cat. This is a very good life.

Finding Ways out of Burnout and Overwhelm

Poppy and I went adventuring in a creek recently. It was so peaceful. There are struggles and difficulties all around, then there are these islands within it all that are so precious, where everything is still.

I clear a space and ignore my phone. No multi tasking. The curse of the freelance life – work creeping into every waking moment, is deliberately put aside. I don’t problem solve, plan dinner, handle admin. There is a rare clarity, ice clear and deeply refreshing.

Since I last burned out a couple of years ago, I’ve been quietly exploring a private project: what creates overwhelm, and what reduces it? Burn out is bigger than overwhelm, but for me it was the biggest and longest issue I had to deal with. I see overwhelm everywhere, not just at work but in everyday life, most especially for parents. It’s often framed as part of various mental illnesses and disabilities, but it’s such a common and difficult experience I feel it needs its own name and space to be understood.

For me, overwhelm is a chronic state of exhaustion, scattered thought, poor concentration, emotional intensity and changeability, and inability to grasp or manage tasks.

Reflection

I’ve been borrowing ideas from many sources, and using my own therapy as a kind of compass to treat my own overwhelm. I try things out and notice if my overwhelm deepens or eases. I’ve found reflective journaling is ideal for this. Each day or two I journal and notice what’s helping and what’s making things worse. I get an overview that’s nearly impossible for me to find any other way.

Some days when my overwhelm is high, I can barely walk into my shed. It’s way too much to handle, a million things all needing organisation I simply don’t have and I feel such panic that even opening the door makes me want to cry. Other days when my mental space is going well I can walk in and my mind is clear. It’s really not so bad, just a few bits and pieces. I can see what needs to be culled or sorted, packed better, given away. It’s so manageable. The difference can be startling!

Trying harder doesn’t help

For example I’ve found overwhelm is often embedded with false beliefs about productivity – that doing more and working harder and longer are essential to productivity. So my intuitive solution for the early signs of overwhelm (one of which is reduced productivity) is unfortunately to do a bunch of things that are likely to make it worse.

As counter intuitive as it feels, rest, doing something completely different, and setting aside proper time to deep dive instead of scattered multi taking are all very useful for productivity.

Understand the weight of the invisible mental load

One of the challenges about burnout in life rather than work is how difficult it can be to get a break from it or even see it clearly. Some of us find a lot of our work isn’t only unpaid but unrecognised, even by ourselves. We feel exhausted but can’t name what we’ve done all day, can’t take time off but don’t use the concept of being ‘on call’, and end up fitted to the gaps in the somehow more important activities of study or formal paid employment being carried out by those around us. Being able to notice what we do and who we do it for can be essential to recovery. I have found simply tracking my time has been eye opening in terms of things like how much sort work I do for others on a daily basis. This isn’t a bad thing – unless I don’t factor it in. This is a very interesting article on the topic of invisible mental load.

Executive function capacity is a limited resource

I’ve also found it useful to consider ideas around ‘executive function’ from the autism community (here’s a great post about an adult autistic’s perspective on his struggles with executive function limitations). Executive function issues also turn up a lot for folks with ADHD, trauma, and dissociation. They relate to our ability to plan, sequence tasks, keep track of time, and prioritise.

Many higher level brain processes are limited resources. If I’m living such a chaotic life that I need to use a lot of thought to plan hanging out my washing, that’s a lot of capacity being used up on tasks of daily living. Routines, structures, and rhythms are ways I can take those tasks out of intense intellectual activity and into habit, which is largely mindless and takes little mental energy. (which can help explain why some folks become very wedded to routines – if you have limited executive function your routines are your safe way of keeping life going)

It’s the same process that makes driving an intense intellectual process for a new driver, and something that can be done on autopilot for an experienced one. Autopilot frees up capacity for other tasks, or mental rest.

The impact of decision fatigue

Decision fatigue is also an important aspect of overwhelm, and one that burdens those of us in poverty much more than others because poverty involves constant trade offs – and these are the most mentally exhausting decisions we make, between two or more important things when we can’t have both (like food or medicine). There’s a great article here that unpacks this more as well as a lot of interesting research behind the ideas.

Sometimes the job is impossible

Overwhelm is often a response to a catch 22, or an impossible ask. Parenting through adversity of any kind often involves trying to accomplish very challenging tasks, such as supervising very young children while severely sleep deprived or ill, or trying to provide quality childcare and household management simultaneously,or meeting the physical, social, and emotional needs of several children of different ages/needs, at the same time.

I sometimes find it helpful to think of parenting as if it was a job, and thinking about what my union might be asking for when they want better, safer conditions. Do I need less tasks? More time? More skills? Rest? Support? All of the above, of course, but some weighed more than others, and some easier to find solutions to.

When I ask myself ‘What’s usual in thr paid versions of this role?’ sometimes the pressures and catch 22s emerge in a way I couldn’t see before. It can also help me to see and articulate difficult concepts such as I love being with my kids but I hate trying to create fun safe times together and also sort out all the washing. When everything merges together it can hard to figure out where things are actually working because it all feels awful.

‘All or nothing’ is a game you always lose

Another thing I’ve been finding helpful is to watch out for the ‘all or nothing’ mindset that kicks in when I’m overwhelmed. I know I need a break and I’m dreaming longingly of the weeks away on camp, but turn down the opportunity to have ten minutes to myself because frankly, what’s the point.

I have been finding it difficult to make ‘wild time’ since the kids came along. I miss my long late nights writing poetry, driving under stars, and sitting by the sea. For the last month I’ve experimented with 10 minutes by myself in the bedroom each night, with candles and my journal. Part of me hates this – where’s the spontanety? The stars overhead? The long hours? How can wildness be scheduled?

That part is right, it’s not the same.

And yet, it’s better than not doing it at all. It’s still a candle, a bone pen, a sacred space. It might be a snack instead of a full meal, but it still nourishes my soul. And a nourished soul speaks its needs louder, is more playful, resilient, and certain. It keeps seeking a heartful and passionate life. 5 minutes of painting is better than not touching the brushes for 5 years because you don’t have the time.

‘Freeze’ is a type of threat response that looks like overwhelm

I’ve found helpful with overwhelm to understand what scares me. This is much harder than it sounds. Sometimes I know I’m scared, sometimes I just get sick, or develop new pain or symptoms. As someone with childhood trauma I have the common but deeply frustrating experience of sometimes learning about my feelings through problems with my body and health. This means having to interpret the myriad of random symbolic issues that turn up. It can be a slow and frustrating process.

Other times I’m well aware I’m stressed, panicked, frozen, blocked. But I often have little idea why or how to get past it. Why is it that some days emails make me freeze and are impossible to reply to? I’m sitting at my desk in tears, humiliated and full of frustration and self loathing, but I cannot make myself do the un-doable task. We’ve all heard of flight and fight but are less familiar with freeze. If you are scared and don’t feel up to a task you are facing, some of us freeze and shut down.

Overwhelm can be a response to abuse

Not being able to think straight, remember, plan, or use higher mental facilities around an abusive person has long been recognised as a common problem for people being harmed. Making plans away from them is often essential because deciding what to in the moment can be impossible. There nothing wrong with you and it’s not unusual

It’s also not uncommon when the abuse is internal. For example, if I’ve often used a ‘stick’ to motivate myself with, forcing compliance even when I’m frightened, tired, or overwhelmed, using meanness and bullying to push myself through hard tasks, I’ve set this scenario up. Overwhelm at some point is as inevitable as a plant wilting without water.

Empathy is restorative

Making safe spaces to deeply listen and empathise with myself has been crucial. I’ve been working with an art therapist on this, instead of trying to push through or problem solve, instead to deeply and non judgementally listen. It’s harder than it sounds!

Deliberately seek the opposite

There are many opposites of overwhelmed such as calm, content, flow state, and confident. Some of them will resonate as more important to you than others, and you can explore more about those ones.

For me one of the biggest costs of overwhelm is in my confidence, so a side project that’s developed out of this one has been: what builds my confidence? I’m finding resources like this TED talk insightful. Repetition builds confidence which is useful to be aware of given how often I work at edge of skill, seduced by the appeal of a challenge. I adore challenges but I’m also anxious, vulnerable to imposter syndrome, and discouraged by failure and rejection. Learning to pull back on the challenges a little and build on more successes is helping greatly. Intentionally working to reduce my overwhelm this way has been incredibly helpful for me.

If you are struggling with overwhekm or care about someone who is, take heart. I hope there’s been some useful food for thought here. Our interdependence is invaluable in situations like this. Someone we can swap scary tasks like booking each other’s dentist appointments. Sometimes the one with more executive function can help break down a task or sequence a series of goals for someone struggling. Many articulate people with these challenges are sharing their strategies so others can borrow and build on them. You can tweak and change and develop things so that the overwhelm eases and you can think again. Best wishes.

Acing Public Health

Happy Dance! I got back my grade for my major assignment of the trimester, a report into the health impacts of different systems of income redistribution (welfare). The subject is at Masters level and I was given 96% for the report! 91% for the overall subject. That’s despite wrapping up the trimester with pluerisy.

I am so happy to have found Public Health, the bigger picture thinking suits me so much and it links across all the projects I love, whether that’s policy level advice or direct client work. All of them need to be underpinned by this understanding of the context in which people are crushed or thrive. Social determinants of health are so crucial and I’m stunned there wasn’t a whisper of them in my mental health peer work trainings.

So that’s a big confidence boost! I’ll be graduating at the end of the year and then will have the option to continue on to the grad dip or Masters – or go sideways into a different field like philosophy which is also pretty tempting. There’s a lot of philosophy in what I do, really we’re all philosophers at heart in some way even if we never verbalise it. We hold beliefs about people and life and live to them. I have very fond memories of some of the conversations with the hearing voices group around a campfire in my backyard, that rare space in which it was possible to break the social conventions that normally silenced us and talk openly, if we wanted to, about how we experienced the world. Even if it was just to have a whinge about the stress of being on welfare.

Studio as a sacred space

Glorious studio days recently. Even by artist standards, I have a pretty intense relationship with my studio. Moving into this space, it took me a long time to let go of my previous space and fall in love.

I will be moving to a bigger, brighter, better space in the same building in July and I’m so excited about it. It will also mean I can integrate my office and studio spaces together and have everything under one roof. This should stream line all my processes considerably, mean I don’t need a lot of duplicate stationary anymore, and make it easier to move between admin and art on the same day.

In preparation I’m sorting, tidying, and planning. I have a pinterest board of studios for inspiration. I’m keen to create something both functional and aesthetic. One thing I’ll make sure to do is set my oil palette up on the right hand side of my easel, so I’m not constantly crossing over myself for new paint.

As part of this preparation, I’ve overhauled my watercolour and oil painting set ups. A friend suggested standing for my large watercolour paintings and I’m already noticing the difference; more confident gestures, better blending, and finally making progress on an image I’ve made 5 versions of that I wasn’t happy with so far.

This drawer beneath my glass desk keeps my palettes and paint protected from dust while I’m not there. The large white palette on the left was an op shop find, a flat porcelain plate which is is wonderful for watercolours and much cheaper than specialty art palettes. Watercolour handles so much better on porcelain than metal or plastic, it’s much easier to mix colours and shades accurately.

My oil paint set up is also much better now. This little glass top table was a steal from the local garden supply store. I lifted out the glass and backed it with a few sheets of neutral grey pallet paper for easier colour mixing. It cleans off while wet with a baby wipe, or once dry, with a wall scraping razor.

I had partly completed this artwork in a class last year about painting in the style of the Old Masters. It’s a copy of a painting ‘Arachne’ by Diego Velazquez. This week it was time to finish it.

She still needs a few more glazes but I’m very happy with her.

It was fantastic to get back into oils, I’m looking forward to my next one.

I have a number of irons in the fire at the moment for my next projects and so far there’s promising feedback on a couple of them. I’m excited about starting the new financial year with a better working space to meet whatever comes. 🙂