My vulnerability and wellbeing talk

I’m halfway through illustrating my vulnerability and wellbeing presentation for a Sydney conference for online activists.

I decided to go with black ink and watercolor for this series. It’s starting to look beautiful.

I’ll be sharing about the challenges and opportunities that come from being vulnerable in public, and about understanding and navigating online abuse.

It’s been a little while since I’ve given a ‘peer work’ based talk and I’m excited to be in that space again. When I was starting out, it was hard to find resources about exposure stress or dealing with abuse that spilled over from online into your personal life. There was a lot of general advice that often didn’t fit me or my circumstances very well. It’s been great to gather a broader and more nuanced collection of strategies for people to explore.

It’s also been really interesting to spend time reflecting on my work and experiences, on writing this blog and the impact it’s had on my life. I’ve challenged myself to take a fresh look at why I share what I share and if anything has changed the picture. Poppy is part of that. I hope I’m leaving a legacy by which she could understand me better and understand how deeply she is loved and how much she is wanted. I sit on the intersections of many stereotypes and minorities who’s stories are often not told, or told for us from outsider perspectives. This has been a place for my voice, an opportunity to meet me as I really am. Not a recovery guru or an infallible expert, but someone who has learnt to be mindful, reflective, and deft about vulnerability and community. Both more different and strange to others, and much more similar and human than the stories about people like me would suggest. Just like the rest of the world.

I don’t believe in normal, I’ve never yet met anyone normal. Everyone in some way doesn’t fit the average. It might be about things that are very small and almost never come up in our lives or it might be the constant daily cause of threat to our existence.

I also understand the usefulness and limitations of labels, the way ‘validated diversity’ becomes a game of box ticking and pigeon holing, creating new hierarchies of recognition and invisibility, of the mainstream and the marginalised.

It’s given me space to explore – and forced me to find words for the way I don’t believe in one size fits all ‘good life,’ or success, and I don’t believe in standardised recovery. Off the shelf ‘treatment’ for emotional suffering needs to recognise that relationship is the context in which the wounds are both inflicted and healed.

This seems such a contradiction for someone who is currently loving studying population based health and disease in epidemiology. The mantra of individuality and diversity can liberate but they can also paralyse – if you can’t take an off the shelf treatment, how do you figure out what works? How do we tailor our own hope and healing?

Exploring self regulation in a world that starts by assuming people in pain are broken and should be fixed by submitting themselves to an external expert is a challenge indeed. And the alternative extreme – placing the burden on individuals to navigate the traumas and challenges of entire social power structures, the brutal inequity and rankisms of our world as if they are personal failings. There is no one path and no right answer for us all. But there is between us, the creation of relationship and connection in which we all are held. There is between us the opportunity to explore what freedom looks like in connection with responsibility, to listen for the things that resonate and reflect on the tiny experiments we all make of each day. What hurt? What helped? Where are we more alone and suffering, and what brings us closer together?

We are complex creatures with minds designed to do exactly this – to predict, to adjust, to explore, to listen and learn as we seek the best pathways. There are times and places others know better than us or can see past a block we can’t get through. But there’s no world in which our lives are better for surrendering them to someone else entirely and forever. We trade off the needs of the one and the many, we blunt this or hide that to be part of the group. But our attunement to ourselves remains the closest listening and best hope for what we seek, and our relationships with others are still the best medicine for the wounds of life.

Insomnia as an Invitation

It’s too beautiful to sleep here tonight. The wind is restless and roaming the garden, slipping in through open windows to creak and sigh the doors.

I have little shorthand explanations of things that often help remind me of approaches I’ve found useful in the past. For insomnia it is this: I can’t sleep when my mind decides there’s something else I need even more urgently than I need sleep. If I can figure out what that is and meet that need even in just a small way, sleep will come.

Often it helps. It could be pressuring trying to figure it out, lying in bed exhausted and confused. That would be incredibly unhelpful. For me it’s more an invitation. It changes the problem from one of distress without meaning, something difficult and frustrating that just happens without cause and that I can’t control, to something that makes sense and is meaningful where I have power and influence. My mind and body for reasons unknown to me have prioritised something above sleep. What is it?

Sleep hygiene is important of course. It helps when you understand that melatonin, the hormone responsible for sleep, needs sunlight in your eyes for you to build it, preferably early in the morning. So insomnia can be helped by sitting in the early morning sunlight and helping your body build enough hormones to restore sleep routines. It helps when you learn that teenagers tend to have very vulnerable sleep routines that get out of whack quickly and need more sleep than they did as kids – and that some adults retain this and find that one late night means not being able to get to sleep at their usual time for days or weeks. Understanding the way blue light from phone screens interferes with sleep is very useful. All that biological stuff is good and important and sometimes it’s sufficient.

Sometimes it’s not. I’ve had terrible trouble with insomnia at times, and when there’s been other things going on no amount of sleep hygiene would help. Severe nightmares have made sleep a terrifying thing. I’ve stopped sleeping at times for weeks, heralding severe dissociation or psychosis. Very few sedatives work on me so there’s little help from that quarter.

So for me I’ve needed to find other ways to approach it. Thinking of insomnia as something that happens when something is wrong paralysed me. Thinking of it as something that happens when there’s something I need more urgently than sleep was useful. When I can’t sleep, I use the time to tune in and notice what’s going on. I might journal or write to a friend online and chat (it’s useful to have friends in different time zones for this reason). Sometimes I need to think about something, feel something, express something. Sometimes I’m too buzzing with excitement and need to do more to settle and calm my mind. Reading fiction often helps me, on a phone app with a blue light filter and the screen set to black and the text to white I can read in the small hours without disturbing roommates.

Sometimes Narnia is calling me, the night, the wind and stars, poetry beating in my blood. The ordinary world fades away with the dark, and for just a few hours I can taste my own soul, feel the wings at my back. Sometimes that’s a call I need to answer, more than rest, more than sleep. To creep away from sleeping household and stand under stars or paint with inks by lamp light in the silent house.

Some needs are bold and strong as lungs demanding air or stomach craving food. Others are incredibly quiet and can only be heard when the world is asleep or we are alone and without responsibilities. Questions we need quiet to ask or contemplate, trees that need to be breathed in. The dead remembered, the dreams counted. Sometimes it’s only at night the tears can come, or the poems, or the hope. And then it’s a blessing to be awake, that they do not slip past us unnoticed as we forget that the daylight world is not the only one we can walk, and that who we are in all those roles is not the whole sum of us.

Handmade Book: Little House of Colours Bestiary

I am thrilled to share this special project. It’s a tiny handmade accordion book, bound in silk with cotton and bead embroidery. The pages are a folded long giclee art print of my watercolour original. They are hand gilded with 24k gold leaf.

I’ve been working on it as time permits for months; the text, illustrations, and physical book are all my own. It’s the first handmade book I’ve completed since Mourning the Unborn. I’m still experimenting with different ways of working with cloth book covers, I love to bind them in silk or velvet but it is much trickier to accomplish. I’m very pleased with how well this has come together.

Peer Work and Activism

Peer work – using your personal, lived experience in some way to support others, is a passion of mine. Peer work may be a paid role, an informal willingness to share, or an activist passion in your life. They all count, they are all essential and wonderful, and they all have risks as well as offering opportunities.

I have been engaging in peer work and activism since 2010 when I delivered my first talk outing myself about my mental health challenges. Since then I’ve shared extensively on my blog and other online platforms, and cautiously engaged the media on occasion.

My top posts about navigating, understanding, and struggling with Peer Work:

Some examples of my own advocacy and sharing:

Freedom

Hey folks… I’m caught up on my business admin! I’ve reconciled my accounts to date, separating my income streams so I can easily see what’s going well – face painting, mentoring, community projects, speaking, training, and art. (Currently the first four are carrying the show, mostly because I haven’t had an exhibition this year yet…) Not that that’s a problem, but it’s helpful to see what’s paying the rent. 🙂

I wasn’t 100% sure if the breakthrough extended to business matters too or was more of a creative unblocking… I’m not saying I wanted to spend the day doing admin or that I had no anxiety, but it was manageable. I gave myself good snacks and breaks and was kind and THAT WAS ENOUGH. I didn’t cry or have a meltdown. I got a huge page of things done, sorted out all my work emails, and finalised my tax. This has been the biggest change for me in years. And today is a day off with Rose. ❤️

For a treat I mended trousers and watched an episode of The Good Place on Netflix. I’m finding I just have to do something with my hands every day, even if it’s just mending a hole. Poppy and I now have favourite pairs of trousers back, with tiny felt patches. ❤️ The garden has been soaked in anticipation of a hot few days. Everything is in order.

Epidemiology is wonderful. I’m getting top marks on my assignments and generally revelling in finally being past bachelor level education. The extra credibility is reducing my imposter syndrome way down to manageable levels too.

I’ve found my way. I’m sharing breakfast and a cup of tea in the backyard with Poppy and I have a future.

The Breakthrough

Endo has been kicking my butt this week and kept me home when I’d planned fun outings with family. However it’s not all bad because the major breakthrough I had about my work has been stable for a week now and isn’t fading. This time last week I sobbed myself to sleep with regret for all the choices I’d made about my career. The next day I read a chapter in a book (I Could Do Anything If I Only Knew What It Was, by Barbara Sher) about people wounded in childhood and stuck. They freeze whenever they approach mastery of a skill. Their work life falls far short of their capacity and is fuelled by very old stories about worth. Early injuries leave deep wounds in confidence and self esteem. They become paralyzed by a need for validation, for someone else to see them as worthy and rescue them. So they are miserable at the prospect of succeeding based on their own skills and hard work. They crave caretaking that didn’t happen and are trapped trying to right an old wrong. There’s other aspects that don’t fit me at all – these people are often narcissistic and lack empathy for others, exploiting those around them, for example. That’s very far from me. My weakness is pathological self hate rather than pathological self love. But the hard work not paying off, the freezing up at points in projects where mastery approaches, and the undefinable but overwhelming misery of trying to ‘make it’ when actually I so want to be ‘discovered’ in some way that would make me feel worthy and cared about… That resonated so powerfully and has unbound me.

Recognising the source of these blocks and starting to unpack those feelings has undone their power. So I’m journaling about how trapped, unloved, and exploited I felt in school, and watching my capabilities come back online. I’m crying for how alone, how freakish and despairing and suicidal I felt then. And feeling the present day traps creak open. Letting go of the vague but powerful dream of being ‘saved’ from intolerable circumstances, and finding my strength returning to do my own work and care-take my own life. Not as a sad second prize because no one else thinks I’m worthy, but because it’s my joy and responsibility and no one else could do it better.

Since then I have been into my studio 4 times! That’s more often than I made it in, in the last whole month. I have picked back up old projects I’d been stuck on and finished them. The blocks are gone. I am full of creative energy and every day I find myself itching to do something with my hands, working out how to fit my day around the primal need to create.

Not only is the creative block gone, but the blocks keeping me stuck in my business are also easing with this new insight. My inbox is organised. I’m keeping up with my studies. I’m writing and preparing my upcoming talks for Sydney and Melbourne. I’m taking time off for days with Poppy. I feel so liberated. Every morning I wake expecting it to have gone away, expecting to find myself full of the familiar exhausting neurotic blocks. It’s like living with a tooth abscess for years and waking up to find the tooth gone and the gum healing. There’s so much joy.

Instead of narcissism overlaying insecurity, I went the opposite direction. Raw vulnerability and destructive, compulsive self sacrifice. So where Barbara’s ‘ragers against the ordinary’ recover through altruism, it’s Rose who realised I will recover through connection to self. The past 6 months have powerfully brought home to me that when love is only ever sacrifice and loss, it erodes something essential. The relationships lose dignity. It corrupts instead of heals. There is something harmful about normalising relationships where one person has no needs, where their needs are never a priority.

This is self denial as habit. It is for me, partly the wounds of spiritual abuse, the child taught in graphic detail she had personally tortured and slain her god. It is the bullied and alienated child in unsafe places. It is feeling unloved and abandoned when I care for myself and wanting others to do it for me – a difficult ask when even I don’t know what I need. How can anyone be attuned to someone so disconnected from themselves?

So, in small ways, we tip things on their head. Rose makes me choose what I want for dinner. I mourn the dream of being loved and cared for by others without having to be connected to myself, but also find deep pleasure in reconnecting. I can finally name the story that’s been killing me, the trap I’ve had my hand stuck in for years. Not just me but those around me who also felt the unfairness of my story and hoped that one day I would ‘make it’ in some kind of karma or restitution. So much power comes with naming it, the dream I cannot ever have where someone saves the child. I know what I’ve been dying for. Now I can let it go and live.

In love with my studio

I think I’ve had a major breakthrough. There’s been so much soul searching, reading, reflection, and self discovery this year for me. Things are making sense. I went to my studio again today and it was glorious. Where there has been a sense of profound inner conflict and vulnerability, a kind of hysteria beneath everything like the high pitched keening of a structure under unbearable stress, there is now a lightness. I sang in the car all the way there, volume up high and tears in my eyes. Every time I drive over that bridge I remember 3 years ago when I woke up and the sky was so beautiful, so beyond breathtakingly stunning that I was driving and sobbing with wonder at the same time. I often cast an eye up, to see how it looks. My jaded, faded, greyed out eyes see only sky, no magic, no myth. Sometimes more sparkling and opal like, a hint of that true reality. Sometimes so flat and grey I know I’m broken inside.

Today I sang at the top of my lungs and tears ran down my face with relief. In my studio I embroidered and wove beads on my loom. I felt alive. Not a puppet with strings cut or a train on broken tracks or behind a glass wall but here and so content.

There was good food for dinner and enough money for a couple of luxuries (Nutella, maple syrup for pancakes) and wonderful company for board games. I’m showered and the kitchen is clean and Poppy is asleep next to me, warm and safe.

Life is so good.

I adore my studies. Epidemiology is wonderful. I’m finding it a little difficult to keep up with enough work as well to keep my studio rent paid, but I’m hoping to fix that with a few face painting gigs. I’m just happy. I adore my family and spending time with friends. I was giving serious thought to bringing my studio home and setting it up in my little shed, and I’m so glad I didn’t lose it before things came clear. It’s a good space, it’s perfectly dry and safe and sheltered, unlike my shed. I’ll figure it out. In fact, now that I’m friends with it I’m going to have that opening I wanted and invite everyone around to visit! It’s very special and lovely. I’ll share the details as soon as I’ve set a date. And for now, sleep.

Oil Paint Nymph

Last night I had a meltdown and sobbed myself to sleep in the grip of terrible self loathing and failure. Today I felt fragile and raw but there was a breath of space between me and the pain. I read, reflected, and wrote and found a little peace. I am finally recognising that a deep attachment wound cannot be healed through work or any sort of career success. More than that, it makes those things much more difficult to engage at all. It feels like deep failure about my work life, but the pain has been mislabeled. There is no work that could ease it. It is not through work that I will find a sense of belonging, value, or my place in the world. This is a strangely liberating realisation.

Then I did admin, reorganised the study, and worked on tax. Afterwards I gave myself the afternoon off and went to the studio.

It was beautiful, the sun was bright but the breeze was cool. I set up a 5 colour limited palette and a photocopy of this lovely Waterhouse painting and created this simple study in a couple of hours. I’m gaining more confidence in colour mixing. Then I wrapped myself up in a blanket and sat in the sun on the balcony, writing in my journal and feeling the wind on my face.

I came home to a webinar on supporting patients with somatic disorders, which felt to me like a well rounded day. Curiously the reflecting I’m doing about attachment pain is making the studio a more pleasant place to inhabit and easier to get to. Less blocks and baricades and frozen hysteria. I can see and somewhat predict the traps and monsters of exile and loneliness. I’m happy to have spent time there today and made something beautiful, pushed to develop my skills further. Oil paint is a delightful medium to work in, I look forward to mastering it more.

Passion and Balance

One day each week, Poppy and I have an adventure. Last week we went to the museum and looked at dinosaurs and opals. I thought I might be mildly hallucinating at one point but it turns out one of the taxidermy animals is animatronic and occasionally flicks it’s tail. A little sign about that would be nice!

Then one of us chased pigeons, played in a very small but nonetheless very wet mud puddle, and fell asleep. The other one of us packed up lunch and went to look at all the interesting things in the art gallery in relative peace.

It’s been a very recent development that I enjoy the art gallery. I’m absolutely wild about artists studios but have often found gallery spaces alienating. It’s been weird and a little embarrassing. It’s assumed they are my home territory when actually I used to have a lot of meltdowns after visiting galleries and didn’t usually go there if I had the choice.

But I’ve been doing lots of work unpicking mental blocks and old injuries, and Rose has taken me to some exhibitions where I’ve felt less overwhelmed by my stuff and more about to enjoy them at times. They are not home territory by any stretch (even my own studio isn’t that yet) but they are also no longer hostile territory. I wish sometimes it was a bit easier to be me.

Nonetheless, adventure time each week with Poppy is an absolute joy and doing us both a world of good.

This is one of the last little things I made in my flame work glass workshop, a tiny bee. Unfortunately because he wasn’t annealed in a kiln, his little wings broke as he cooled down. I’m currently immersed in research about kilns and torch types and where to buy oxygen tanks from. I postponed a planned exhibition of small sculptures when Rose became really sick, but I’d love to be able to put it together for next year.

This bead worked perfectly: I was practicing a technique that traps air bubbles under the glass. My teacher said I was the most gifted student with glass she’d had in 20 years of workshops. It just clicked. I adored it and I’m so keen to set up a flame work space in my studio.

I’m also hugely enjoying my studies. Epidemiology suits me and I’m loving falling down rabbit holes of information and getting a handle on the big topics. Today I was digging into health prevention, surveillance, and theories of health promotion. It’s fascinating to see how frameworks that fit one scenario so well (such as smallpox) have been such unwieldy tools in other contexts (such as diabetes), and how poor evaluation can make health promotion interventions look successful (eg education leading to increased health literacy) when they actually backfire and fail on the important scales (eg increased stigma, greater reluctance to engage in prevention or treatment). I’m just enjoying it so much.

My other project at the moment is a couple of talks interstate. I’ll be traveling to Sydney and Melbourne next month to give presentations at big events. This always involves a fair bit of preparation, both for the talk, planning the event with the folks coordinating it, and planning the trip. I’ll be doing a road trip and bringing the family with me to Melbourne, which is very exciting. I’m really looking forward to meeting the people behind the emails too.

I’m still practicing Kaizen and being mindful of Barbara Sher’s types of scanner, hoping that I’ll learn what schedule suits me best and how to set up my projects so they and I both thrive. I’ve several more wonderful projects waiting impatiently in the wings, but right now I’m finding downtime is important and immersion time helps, trying to change hats all day long is exhausting. Hopefully in time I’ll learn more how to balance everything I love so much.

It was a wonderful week and I’m excited about the week ahead too. We continue to muddle through; work, study, friends, home, family. Learning, helping, creating. Good things are emerging. ❤️

My torchworked glass

I’ve spent a fantastic couple of days learning how to make torchworked glass beads with Karen, who owns Adelaide Beads. I have been waiting for so many years to learn hot glass techniques and I booked this class months ago. It was glorious! I adored it and I took to it so fast. Apparently I impressed as a natural. This was the very clever set up Karen used:

And these are some of my first ever beads. I learned so much and I am so excited to set up my own studio space and explore more. My passion is more sculpture than beads (although beads are perfect for building some of the skills needed) and I am keen to try larger creations. The cost of a glass kiln is prohibitive, however!

It was intense and tremendous fun, requiring focus and a steady hand. At one point today I accidentally failed to warm a piece of glass correctly and it shattered, flicking a tiny bit of melted glass into my shoe, where it burned a hole through my sock. Oops.

Molten glass is magic. Making the mixed colour beads or dragging a tool through layers of colour to make a marbled effect was so beautiful. The calm state of focused effort is such a balm to my busy mind. I can see the little sculptures I want to make, clearly in my mind’s eye and I’m itching to learn more. There’s not a lot available locally by way of teaching for what I want to know, so I’m back to trawling YouTube and forums on glasswork. But this was the most amazing start, and I’m on my way now. I’m hoping to create more tiny dioramas and scenes like my Broken City sculpture. Watch this space. 🙂

Navigating overwhelm

Poppy and I spent the day together yesterday. We visited a festival in town, spent a long time learning how to cuddle bunnies, pat baby sheep, not to be scared of the chicks peeping.

It wasn’t one of the easier days. She had meltdowns about wearing clothes, and howled all through the bus trip because I wouldn’t let her kick the window. Sobbing hysterically on the seat next to me, wailing ‘Don’t touch me Mummy!’ as I dug deep for patience. There’s nothing like parenting an unhappy little person to make you doubt your competence! The best moment was when she was dancing to a choir, full of vim and delight and I could sit for a moment under shade and rest my tired brain from the high alert state of watching a small person running around an un-fenced area surrounded by traffic.

It wasn’t one of my easier days, wrestling a sinus infection and struggling to get up to date with the grad cert I’d been a late enrolment in… The challenge hasn’t been the content of the course it’s been the online format, which was a surprise to me.

So Wednesday for example I went into uni and hoped to get some work done after an appt, then discovered I couldn’t complete one assignment because the necessary information had been sent out prior to my enrolment, so I didn’t have access to it. So I hopped on a computer and figured I’d listen to a lecture, then realised I didn’t have earbuds with me so I couldn’t do that without disturbing others. So I came home and tried to access the lecture on the laptop I’ve been borrowing, but it’s embedded in a power point and the open office software messed so badly with the formatting I couldn’t follow any of the text. So I dug up a pair of earbuds and tested them in my phone to make sure they worked, then headed off to my office which has the microsoft office suite on my desktop. Where I discovered that desktops can’t process earbuds with inbuilt mics unless you have a splitter to separate the signals. So still no lecture for me. At which point I cried and came home.

The trickiest part is that I’m navigating these challenges I need to keep my mental space together. The more I struggle with things the stronger my sense of anxiety and displacement become – that I shouldn’t be in higher education, that I don’t belong and I’m going to fail (again). I’ve been talking myself gently through all the challenges for a couple of weeks and bouncing back well, but yesterday with uni and a work challenge not coming together I fell in a hole. I got back from my day with Poppy and couldn’t make decisions anymore. Should I try to get more done (everything is due on Sunday! and I’m late with everything!) or try to rest and clear my head? Bath for restoration or bed for sleep? Poppy woke me up hourly the night before and I felt like my head was a watermelon hit with a hammer. Am I getting sick with the cold everyone’s had, in which case this might be the clearest I feel as I go down over the weekend, or is this mostly sleep deprivation in which case don’t soldier through, rest and come back to it.

My mind obsesses about the problems, trying to solve them even when it’s clear I’ve no capacity left to think clearly. It adds in bigger, older ones I haven’t solved – what am I doing with my work life? How am I going to schedule everything? Where’s the next job coming from? Smaller problems get unimaginably large as the overwhelm diminishes my capacity. Everything clusters together into knots where I can’t assess priority anymore. It all feels urgent and impossible, the unmopped floors, the people I haven’t caught up with, the tax I haven’t quite finished, the assignments due in days… I notice the biggest anxiety is in thinking I’m supposed to look like I know what I’m doing but I’m scared it’s becoming obvious I’m unprofessional/incompetent/unskilled. I’m afraid this is the reason I’ve failed at all those job applications, and the more anxious I am that it’s my fault, the more desperately I try to show I’m competent rather than bewildered. A customer texts asking if I’m free for a gig and I seize up, unable to message back because I have a social engagement at that time and I can’t decide if I need the income or the time with friends more, can’t even work out how I would work that out, and my car died last week, very expensively, so if I say yes to the gig I’m also taking Rose’s car from her and making a choice about her access.

The longer I don’t text back the more my head is screaming with alarms about not being professional, and the worse the sense of failure and self loathing get. Once they are too strong, I can’t push through them enough to write back, can’t work out what to write, can’t make the decision, and everything I do, including continuing not to write back, is utterly utterly wrong, self sabotaging, and proves I have brought all the bad luck in my life on myself. I can see it happening but I’m swept along in a avalanche. Every move I make is wrong, and I can’t reach out for help because I think that’s probably wrong too. I open texts and messages and can’t work out what to write or who to send it to. I can argue all the cases (reaching out for help is a good thing, chasing being rescued is a bad thing, so and so won’t mind hearing from me, I’ve been leaning on so and so too much) and I can’t work out a fair or reality based guideline. I’m just lost and inclined to blame myself. My thinking spirals in on itself and the intelligence which is so useful and incisive in some areas becomes destructive beyond my control.

Overwhelm is such a huge part of dealing with parenting and mental health and yet I find it’s not talked about that often. It’s been a big part of my focus in my family for the past couple of months – what sets it off, makes it worse, makes it better? Carving up my life and rearranging it so it’s not part of my baseline anymore.

So yesterday I went to bed but couldn’t sleep, had a bath and felt physically a bit better. Visited friends for board games and found that I couldn’t do the games and run the mental programs of trying to figure out my study and business/work. That was desperately needed and nothing was engaging me enough to get me there until then. The mental break was restorative. Last night Poppy only woke a couple of times. Real rest, mental and physical. So today, I’ve read over the email from my lecturer that has bewildered me every time I’ve looked at it for two days and at last I think I can see what he wants, I think it’s just an odd grammar structure possibly part of English as a second language (wild guess on my part) where the the question asks What but really means How or Why. Maybe this is normal for public health? I don’t know yet. I’ll adapt.

These are the skills and patterns I need to get this cert. I am going to figure this out.

Deep breath. Soothing internal voice. We can do this. Back to it.

 

Adventure gives life meaning

Poppy and I are having wonderful adventures together again. Every week we hang out together for a day, just us two, and do something fun. It’s brilliant. I’ve been working on my garden and backyard, bit by bit, clearing up weeds and junk and setting up more interesting play areas for her. Clearing away the mess of half done projects that were simply out of reach, and simplifying everything. This gorgeous photo is of her laughing in a paddle pool under the peach tree when planted when Tamlorn died. She brings so much joy and life into my world. I love her so much and I don’t want to miss out on her.

My grad cert in public health is in full swing and very interesting. I’m juggling it alongside a few gigs and projects on the side, which would probably drive most folks mad but feels so balanced to me it’s a breath of fresh air. My ideal week is a sample pack, a pick and mix of favourite things: Poppy adventures, a date with Rose, cooking, study, speaking/training, friends, time in the studio, writing, reading, and projects. Enough housework and admin that everything keeps ticking along and my schedules nest all these different activities in well. I was watching a great interview with a favourite artist, Del Kathryn Barton, recently. She spoke about how lucky she was to spend 5 days a week in her at studio and how few artists get to do that. I felt a chill and realised I would hate that. I’d feel so lonely and disconnected in my studio for that much of my life. It was a strange realisation at first – most artists crave more studio time. But it’s not my marker of success. Which is helpful to know before blindly pursuing it.

I’ve been reading a few interesting books lately and getting a lot out of them. One Small Step Can Change Your Life by Robert Maurer has been fascinating and invaluable over the past month. Like many folks with a trauma history I tend towards trying to make huge changes, innovative, life changing shifts in how I do things that serve to destabilise and overwhelm me. This book discusses the power of making changes so tiny our brain barely notices them and doesn’t feel threatened. It’s change by stealth, laying down new neural pathways subtly without shifting so fast we kick off a panicked flight/fight response. It’s working very well for me.

Another is I Could Do Anything, if I Only Knew What it Was by Barbara Sher. Last night I was reading in bed while Poppy slept next to me, weeping through a chapter about understanding why you need to be rescued to validate old childhood wounds. A powerfully fresh memory of being stranded and trapped in school suddenly overwhelmed me. I was not just unhappy, I was distraught. I was first suicidal at 10. I cannot express strongly enough the anguish of feeling so different, so alone, and so unvalued. A gifted, traumatised, creative, multiple, queer young person, an outsider everywhere.

I mentioned cautiously to friends recently that I have started talking with a psychologist who specialises in gifted people. I told them that I’ve been so careful not to discuss it most of my life because people are so threatened and uncomfortable with people who are gifted. My friend looked baffled and said she loves taking to smart people, why would I be worried and hide that? It’s finally occurred to me that I am trying to hide things about myself to appease the insecurity of people who never liked me anyway.

Unlike the other case studies Barbara mentioned, I blamed myself rather than others for my misery, loneliness, and humiliation. I was isolated and bullied because I was a freak who deserved it. In some ways I am still waiting to be rescued from school, to feel wanted and loved and deserving and important enough to care for. So my tangled career reflects this too, a fear of being trapped, ambivalence and confusion, a vague hope someone will ‘discover’ me and fix things for me. Not expressed with blazing narcissism, but a kind of confused helplessness. If I make it because of my own work, that need to be saved goes unmet. As of course, it must. No grand deliverance now could ever take the pain of those years away. But I can live differently with the scars.

Fascinating book. Since the first chapter a curious change has happened in my miserable inner voice ‘I hate myself’. I still have bad days where it loops, but most of the time if I remember, I can say ‘I don’t understand myself’. And it concurs, and leaves me in peace. A strange inner quiet to contemplate just what that means.

Life is a strange and wonderful adventure. That’s a good thing for a life like mine to be, because adventures give pain shape and meaning and context. It’s not called an adventure if everything is comfortable and all goes to plan. Threads of sorrow, anguish, and darkness all belong in adventures, they can be part of rich and deeply lived lives. I am untangling and learning and find myself feeling very alive lately. I step in and out of poetry, of Narnia, looking at the world sideways to see how it changes. To see what I want and where I could fit. Standing in the hallway of Torrens University, a new student, lost in all possible ways, and feeling the thrill of belonging, being part of something. Is it not the work of our lives to understand the deepest desires of our hearts and seek them? To grieve the dreams lost and turn fresh earth to grow new ones? We are strangers to ourselves until we can bear to look, and look again.

One of the questions in Barbara’s book, designed to help us better understand ourselves, was ‘If you could spend a day with anyone in the world, living or dead, who would it be?’ Names of brilliant artists starting flicking through one part of my mind. Quite unbidden an answer welled up from my deeps: Rose and Poppy.

Already here, and blazing so brightly in my life.

Ink Painting: We fall into the stars

A3 size. Ink on Arches paper.

A little while ago, Rose took Poppy and I camping, back to Rapid Bay. The place we used to go when dating. The place I went alone to mourn Tamlorn the Mother’s Day after the miscarriage. The place I fell off the planet into the void when running from the ‘real world’, but sent alone under the stars, in exile.

Together we watched the stars, a million million of them, brighter than I’ve ever seen. Satellite and stars falling and the milky way a mist across the sky. In the bay, dolphins swam with their young. Poppy asleep on my lap, my eyes wet with tears. I didn’t know if there would more nights like this for us. Somehow here we are, holding hands under the stars.

It is the work of our lives to find some way to stay alive, to still feel alive.

In Rose’s arms there, I felt so alive, it was like breathing stars that fluttered in my chest. We sat up in chairs opposite each other, held hands and looked up. It felt like the world tilted and we were looking down, into an ocean of lights. We held onto our chairs and each other and kept looking, hearts cracked open in wonder. All that starlight poured in. Love grows stronger under moonlight, feeds on poems.

We sit at the edge of the world and hold hands. Our child sleeps. The wind is warm and soft. We look up. We fall into stars. Love binds us to the world and each other. We do not fall.

Glitter tattoos are awesome

There’s nothing better in the world than spending a busy afternoon giving face painting and glitter tattoos to a happy crowd of young and the young-at-heart, followed by going home to a hot bath, chocolate, and a book. ❤️ Endometriosis be damned. I’ve becomepretty good at freehand glitter tattoos, at this event everyone wanted their names sparkly, including my namesake here. 😊 The weather is warming up and parties are in fine swing. It’s such an excellent side business for a visual artist with brush skills who loves kids. I’ve got rent for my studio, time with my family, and all is right with the world.

I’m back at uni!

I am very pleased to share some wonderfully good news. I have been accepted into a Graduate Certificate of Public Health by Torrens University! I have been on tenterhooks all week awaiting their decision. I’m starting immediately, in fact the course started 2 weeks ago so I’m slightly late to it, but tremendously excited. Here in Australia a grad cert is about the equivalent of an honours. Usually you need a bachelor’s degree to access it, but I got in on the strength of my resume (showing 7 years work history in the field, and my cert 4). I’ll be studying online for the first time, back at uni for the first time since Poppy was born, and I can’t wait to get started. My first subject is epidemiology. I’m going to have to brush up on APA formatting. Eeeeee!

I am hopeful this may help with my severe imposter syndrome, and give my work a little more credibility. I’m looking forward to learning new things and having access to interesting books and theories. It also opens the doors to a Master’s or PhD should I decide to pursue that road down the track. I’m also just incredibly excited that I finally have a resume that a faculty head described as impressive. ❤️ That’s been a real labor of love and I wasn’t sure that freelance work would be seen in the same light as a string of jobs, but there’s some pretty fantastic projects in there. I’m very proud of it.

In a funny twist of fate, I have also contacted my old art school where I had been part way through a bachelor’s degree that was defunded. They are now offering a new bachelor of visual arts that has exit points at diploma and advanced diploma levels. It’s looking likely that they will credit me for some of what I’ve already studied and if I complete a couple of extra classes in second semester next year, I could graduate with a diploma and have something to show for my work. So I’m going to investigate that further too.

The news couldn’t be more welcome, especially considering that today was otherwise horribly challenging with a number of unpleasant surprises such as my car radiator cracking and dumping coolant into the alternator. So, bring on the higher education! I’ll be studying online so I don’t need a car for that anyway. 😉 Rose and I will book our van in for a bit of extra love given all the traveling and camping we’ve been doing in her, and share that instead. Onward and upwards.

Family Joy

My wonderful sister was married on the weekend! Rose and I were bridesmaids and Poppy was a flower girl. It was very beautiful, very moving, and I cried through most of it! We were not as helpful in months prior as I’d have liked to be, Rose being in hospital was unfortunate timing. But we were able to help a bit with their gorgeous newborn baby so preparations could happen, and I helped make a bouquet and the fresh flowers and pails for the flower girls and boys to scatter.

Most of the petals were harvested from my garden that morning, keeping to the theme of purple with a little white, pink, and red, and everything chosen needed to be soft for any bare feet to step on.

My clever sister designed her brooch bouquet with gift brooches from family and friends. I wired it up and helped secure it all in place.

This was the bouquet part way through construction: a bit less glam at this stage! Don’t ask me to make another one, I swear I’ve got more grey hair!

Funny story, I was finishing the handle with some small nails the night before the wedding when Poppy grabbed a jar of nails off my desk, tipped it up to her mouth like a cup, then coughed and spluttered. When quested she told us she’d swallowed a nail so we all had to trek into emergency again. There, the nurse stripped her down and discovered she set off a metal detector over her chest and back, faintly! We were facing possible surgery and most of us not making it back to the wedding. But the x-rays came back completely clear, so after many unhappy hours of nil by mouth, we were able to take her home and continue as planned. Lucky!

There was a surprise naming ceremony for my tiny niece at the wedding too, and I was so honoured to become a godparent. ❤️ My sister is a truly lovely, brilliant, and kind person, one of my closest friends. To celebrate and part of such a joyful (exhausting) time in her life makes me very happy. I can’t wait for our kids to play together. And maybe sometime for Rose and I to celebrate our family too.

Still kisses with saliva

You know it’s a good weekend when you wake up on an airbed on the floor of your mates place.

Rose was back in the ER last night having brain scans to rule out scary possible causes for severe headaches and really high blood pressure. I wound up driving all over the countryside and took her back up to the party late in the evening then decided to stay put. Her scans were clear, thankfully. Something’s going on but it’s for the local doc to sort out.

Apart from the health scare it was a great day. I even made it to the studio, bought some new paints, and started a new art work. Had some folks switch out who haven’t been around in ages. Felt liberating.

Rose and I celebrated 6 years together this week. We went out for ice cream together and have another camping trip planned. It feels like we reached rock bottom recently and are coming out the other side. Falling back in love. Making a life again, not just surviving and holding on. After the long downwards slide, engines on fire and screaming, it’s exhilerating. Still here. We’ll make it work.

Posted this on Facebook: Happy 6 years together, darling. What an adventure! You are the most amazing person, so kind, devoted and loving. You have such depth and complexity, so many contradictions and unexpected qualities. You give me great courage! Your patient and enduring love make you the most attentive and wonderful parent. Your honesty and bravery inspire me. Your dreams for our future make my heart happy. The humble way you learn and change your mind and explore life keep you open to new horizons and possibilities. You are beautiful and strong. I’m proud to be with you. I love you.

Waking up to find it’s all not as bad as it seemed. Counting the cost and tallying the things we still have. It’s enough. There’s enough here for a good life. There’s good earth here to grow in. Good memories to build on.

The household is still sleeping. Poppy is pressed into my back, warm and soft. The sunlight after the night’s storm is chill and white. My bones are full of happy conversations around the fire with friends, and chiming softly. It’s damn cold. But yesterday we switched and stretched and remembered the real world isn’t the only one out there. Stepped sideways into other places. Supped, cracked bones, sucked marrow from life. Ink on fingers, poems slyly in mind like sleeping snakes. She kisses me and I can tell she means it. I sit under the tree in the backyard and the world turns over in its sleep, I slip past and out some other door where my chest is a seashell holding the roar of the ocean. We drive in the night, Bowie, NIN, VNV, Numan singing of darkness. Into the company of people and we are not afraid.

Reconnecting with my daughter

Poppy is two now! She is one of the greatest joys of my life. I never thought I would meet anyone else who loves swings as much as I do! We spend hours on this little swing in our back yard, or bigger swings at the park. ‘Higher, Mummy!’ She sings to herself on them, her own complicated versions of Twinkle Little Star or Indy Wincy Spider, concluded with giggling. Sometimes like yesterday, she stays on so long so rocks herself to sleep. Her little head droops and eyes close. I gently bring the swing to a stop and gather her into my arms, soothing the storm of tears about wanting to be back on the swing until she calms back to sleep.

Most mornings we share breakfast together in the back yard. Porridge, cereal with banana, eggy toast, and tea. Under the tree my heart expands, wakens more softly and looks at the day with a hopeful spark.

All my life I have so deeply wanted to be a parent. I am so grateful and so fortunate. She is glorious. And over the past month, I’ve learned to my surprise that I love and am well suited to being a stay at home parent. When both Star and Rose needed great care I quit work and felt like my life had ended. A sense of fatalism and despair. But I also felt something I didn’t expect. Joy, relief, new hope. As I match my days to Poppy’s needs and rhythms, a life emerges that is splendid. There’s peace, and fun, and connection. So I keep building on it. I find that my ideas about work are deeply poisoned. I am trying so hard to understand and recover from them. It is slow, painful, frustrating. Full of flashes of insight (work is my punishment for being on welfare) and such profound shame and self loathing I cannot understand anything or progress anywhere. I sit in front of my shrink sobbing until I want to throw up and there’s no understanding.

I’ve quit work. My work now includes peace and connection. There’s moments I simply sit and look at the sky. There’s tickling Poppy while she shrieks and tickles me back. There’s holding her as she falls asleep and feeling my heart expand and burst softly in my chest. A hundred invitations to be present in my life in a way I haven’t been.

Softly softly, the carer counselor tells me. We lose connection with ourselves and want to change everything, make it all right, now. Little changes for carers drained to the last drop. Choose what I want for lunch. Sit in my favourite place. Don’t always offer to do, eat, watch what the other person wants. Undo the impulse to destructive self sacrifice one tiny decision at a time, a few times a day. Tuning back in to my self and owning my own choices.

Rose and I realise that I’ve also stepped back from her pain in a way that’s blocked me from connection. She’s vulnerable, as the non gestational, non biological parent. Even more so with a terrible history of losses. I am sensitive to her fear, her desire for closeness to Poppy. When Rose is around Poppy, I fade into the background, unobtrusively. I cook or clean and care but I do not play or adventure or adore. I don’t step into the place that makes Rose sad or afraid. And in this way, for the best of reasons, I step out of my own life in a tiny thousand ways. My own relationship with Poppy. I become a caretaker instead of a parent. Rose has always seen this and been puzzled by it. She would try to cue me back in touch, help me notice when Poppy was trying to get my attention, encourage us to spend time together. I would read her buried anxiety and unthinkingly step back. Love as sacrifice. A vicarious life. My needs last. It’s hard to have a relationship with someone so out of touch with themselves they are barely in the room.

Rose emerged from her breakdown to find what she’d been hoping for has happened. Poppy and I sing to each other, snuggle, connect. She invites me back in, learns to celebrate alongside the little wince when I’m connected. I pay attention to my pull off course, the inclination to fade back and make small course corrections, a hug, eye contact, a few shared words. This child has two parents.

I am discovering the power of limits as well as nurturing. That a deeply loving yes must be bounded by the capacity for a deeply loving no. A willingness to let the other hurt in pursuit of their own growth. I adore Rose but should never have withdrawn from Poppy to make her more comfortable. Nor would she ever have asked that of me! There’s a kind of nurturing that is life giving and a kind that stifles, incapacitates, infantilises, wounds. I have mixed them up together and not been wise in my caring. Those I love and tend have grown both stronger and weaker in my care. I did not mean to harm but I have harmed. Stripped of agency, responsibility, the belief in a person’s capacity, they drown in their own vulnerability. If we never hurt we are unable to learn or choose. My love and caring has set people free and eased loneliness and suffering, but also created a kind of institutionalisation I did not foresee, and trapped me in a dungeon alongside them, also being tortured by their demons. Most carers know these places, these dilemmas. They are deep and difficult.

We are taking many steps a to a new life. Small errors are turned by time into routes way off course. The power of leadership, parenting, caring amplifies our weaknesses and impacts those we’re responsible to. Growth is a lifelong process, and sometimes tiny changes have huge impacts. Poppy takes me by the hand and asks ‘Swing, Mummy?’. We go swing.

The tide starts to turn

It’s been an incredible week here. Rose took me camping to my favourite place last night, by the sea under the stars. My heart is so full.

Poppy had hand foot and mouth this week, poor love. Today she was recovered and no longer contagious so she could go back to day care.

We couldn’t take her anywhere near other children and she was very bored and frustrated, so yesterday while recovering from the conference I took her to the beach for a picnic. It was an absolute joy. One of the silver linings of the terrible crisis in my family has been getting a chance to spend more time with her and connect in a way I’d started to lose. I was doing admin and housework and running around being responsible but missing out on snuggles, and being told about dinosaurs in a very serious voice, and the warm fuzzy wonderfulness of parenting her.

Things are easing. I’ve handed in the final draft of the prison magazine project I’ve been working on and the feedback has been stellar so far. I’m starting to cast a careful eye over the next possible projects with dawning excitement.

Rose is healing from the devastating breakdown, a little more present each day. More stars in our skies. We both step back from the edge, baby steps. She’s exploring study options and thinking of retraining in a new field. We are starting to dream about our future again.

And Georgie, Beyond Blue CEO, has tweeted this, which feels like it belongs on a book cover or something. It’s a beautiful summary, I’m happy to try and live up to that.

Disability and Employment

Some weeks ago, I was asked if it would be okay for Julia Gillard to quote me in a speech. I said yes, and she described me as ‘erudite and charismatic’ and quoted from my video with the SA Mental Health Commission about Mental health in the workplace, in this speech to the Diversity Council of Australia. Which is pretty awesome.

Julia is the Chair of the Board of Directors for Beyond Blue, and they were pretty keen on the message too. CEO Georgie Harman got in touch to share the video and invite me to speak on a panel at the Disability Employment Australia Conference #DEA2018. So today I trundled off to the Hilton to meet some new people.

There were some seriously awe inspiring folks there showing us what can be achieved with a disability. Which is inspiring and fantastic, if not intimidating. Conferences tend towards the shiny. So I did my thing and was vulnerable in public. I spoke about failure and shame. I told them I was possibly the least successful job hunter in the history of the world, and gave them a 5 minute run down on hundreds of job applications, rejections, sad experiences with DES providers, a microbusiness cert 3 for people with a disability where we were repeatedly told business is easy (spoiler alert, it’s not), NEIS, freelancing, jobs that evaporated after I applied, jobs that evaporated after I’d been successful at applying, training as a peer worker and still not being employed! It’s no bad thing to have someone speaking from failure. There’s so much you miss otherwise.

I was honest and passionate. It was hard. I thought TEDx was the most exposed I would ever feel in a talk but this was bizarre because it’s still something I’m wrestling with. It’s raw. Career has been my holy grail my whole life. I don’t come to a Disability Employment Service Provider for a job, I come for an identity! For a sense of purpose and meaning and connection. So I don’t have to be a bludger, a leaner, a long term unemployed, a hopeless case, a complex needs client, an underachiever, a dropout, a misfit, a failure anymore. I come because I don’t want to be poor for the rest of my life and I don’t want my children to be poor. I come because I’m so tired of pity and shame. I want to be a real person with a name tag and a business card and a place in the world.

So I talked about adversity and diversity and the complications of our lives where we don’t fit one box. Multiple intersections of difference and disadvantage, complex diagnosis, chronic pain, queer identity, homelessness.

We were asked how to motivate people to want to get help into work, and I said of course we want work – make it safer and make it more dignified. I talked about how essential work is but how risky too. Job hunting can put our financial safety nets at risk, can expose us to bullying and toxic workplace cultures, and can put more failure and rejection in front of us than our mental health can cope with. I also talked about how out of reach work can be during crisis, that often my personal definition of success is painfully simple – everyone I love is still alive at the end of the week.

I said that I’ve learned that I can’t successfully job search when I’m drowning in shame, terror, and rage. A bit like dating, I need to be okay with myself as I am. That means we all need to understand just because I don’t get paid, doesn’t mean I don’t work. People like me work a lot. We are often well suited to informal roles that fit around our disability. We run unpaid support groups on social media, we raise kids, volunteer at school, help out friends, care for family. We often create our lives in the gift economy, and transitioning to paid work is a very different culture. I shared how I’ve needed psychological support to help me see that having to make hard choices – like caring for a family member in crisis over finishing a degree, doesn’t mean I’ve failed.

I shared how many folks like me wind up freelancing so we can navigate our disability, and what a baptism of fire that is for many of us. I shared about the amazing Freelance Jungle and how essential that support has been to me. I talked about how changing my focus from what skills I want to use, over to what business model suits me best, fits around my limitations and causes the least stress has been far more helpful for me. Finding my own way of using skills that more closely mimics the informal work I do fits so much better than the rigid 9-5 model, or the huge, impossible to schedule projects that take years to finish and pay. It’s not about the skills, it’s about how the work is done and how well that fits. So I’ve moved away from project based work and back to gigs – short term, easy to schedule, and much less stressful for me. I mentioned that there’s a certain level of absurdity about funding an organisation to help me find work instead of just hiring me.

It was stressful, fun, exhilarating, exposing, and surreal. There were many interesting people to talk with, which I greatly enjoyed. My anxiety was pretty off the charts at times, but that’s the nature of that kind of personal work.

Georgie gave a fantastic talk about how we need to take care of our staff and our workforce too, to lead by example and prioritise mental health in the workplace. She was a strong advocate of the value and worth of people with lived experience. We both promoted the value of peer work in the disability employment context: that if you have never seen anyone do what you are trying to do, that is a very large gulf to bridge. People who share their experiences – the successes and failures – give us so much richness in figuring out our own paths.

So I hope I held a space for the human experience of disability and unemployment. There was a great deal of passion and sincerity from the people I spoke with. I was glad to be included.

 

Our week of birthdays

Star has her 18th birthday party tonight. Friends have generously opened their home to her friends. I’m currently resting on the couch while Poppy sleeps on me. I’ve made 36 small pizzas so far and I have another 12 to go. Star had severe tonsillitis earlier in the week but is looking much better and jittery/excited. She has cute balloons and a photobooth.

My family has a week of birthdays all in a row which is hectic to say the least. We are spacing the celebrations this year. Poppy’s was last weekend in a local park with hot soup, nature crafts, and umbrellas on standby. Rose will be in a couple of weeks in a cafe with delicious chocolate treats and boardgames.

I’m just so glad to be doing this. So glad Rose is still with us and able to be part of things. Happy Star is 18 and doing so well in her own recovery! She’s house hunting and excited about the next stage of her life. And Poppy is 2, fearless, loving, and funny. We are such a mess. And we are all okay. Such a beautiful, vulnerable collection of people I adore.

Our tribe have surrounded us with so much love. Some days I can’t feel it but no one seems to be taking that personally. Funnily enough it’s easier for me to feel the love around us when it’s directed towards someone else I love. A friend of a friend is making a cake for Star and I damn well cried when I heard about it. That we are trusted and loved and considered deserving of informal support when the formal family, health, and mental health supports have been so much less than excellent this past few months… To have not just our people care for us but have them draw on their own networks for us. To have people who are not in such pain welcome us into their lives in so many ways so we can rest in their peace for awhile… It’s healing. It gets us through the day, and that’s all I’m thinking about at the moment.

These birthdays are so worth celebrating because each of these people are so awesome in their own way and I’m grateful they are in my life. ❤️

Strings cut

Yesterday, I got stuck. At the mid point between home and studio, I turned off the road and parked. Unable to decide if I should go forward or back. I sat for two hours, while the rain poured down. I could not work out what I needed. I thought of calling Lifeline, or a friend, I tried to formulate text messages or status updates. I listened and asked inside for clarity. I worked through various options like a game of chess. I got cold.

Poppy was in day care and didn’t need me. Star was going to visit but was unwell. Rose was going to visit but was exhausted and rough and needing alone time. I felt I should go home but was also afraid of conflict and tangles. I felt I should go to the studio but could not make myself travel further away from home.

I came home in the end and tried to sleep. Everyone else slept. A bone deep chill had settled into me, fully clothed beneath blankets I still shivered. I gave up and crept into a deep hot bath, trickling in scorching water until my skin turned pink. The chill finally eased and the paralysis with it.

I often do not know what to say, what I need, what to do. I feel like a puppet who’s strings have been cut. With Poppy I’m purposeful, her needs are clear and straightforward, they sing a song who’s steps I know and believe in. With Rose I’m tangled tangled tangled. I struggle to shake the feeling that I’m destroying my life.

I write text messages and don’t send them. I don’t know what to say. There are no words. I don’t know who to tell. We are so surrounded by love and I am afraid. I try to reach out and find my hand still by my side. Then the moment passes and I can laugh again. My life does not feel so broken and her smile is not full of the ruins of our love. My world flickers between broken and whole. Star drives away for the night and candles gutter out in my heart. Rose does likewise and my anger dies like a wind blown out. I do not understand anything, but walk blindly in fog. Poppy curls up in my lap, wraps her hands around mine. I smell her clean hair, soak in her sweet smile. I have never felt so ill equipped to keep her world bright. Yet I am doing it, following the tides, come what may, cooking, cleaning, cuddling. She animates me. I am hers.

When all the threads unravel the simplicity of story and roles gives shape to the formless and meaning to the obtuse. They hold me like a vase holds water, and I am grateful. The kitchen is clean, the child fed, not all the world is formless chaos. It will not always feel this way.

Rose is back

Rose is home but not home. She was discharged from the psych facility on Monday. We are doing something that seems strange to most, I’ve asked her to keep spending nights apart. Not because we are breaking up or she’s awful to be around, but because I am so burned out I am on the edge of my capacity to cope. The last time she had a breakdown, so did I. This time I have kids and I desperately need to keep my feet under me. I have had many warning signs I’m on the edge, difficulty making myself get out of bed, or force myself to drive home, lots of crying, episodes of screaming (when alone), intrusive thoughts, intense anxiety and irritability, insomnia. I love her to bits and I’m very empathic. I can’t go offline when she’s with me, I’m so tuned in to her distress I pick up on it and feel it all myself. When she can’t sleep, I can’t sleep. I’m always on duty. I’m also chronically triggered. My history involves a lot of caring, and some very painful memories are very close to the surface at the moment. Helplessness in the face of suicide attempts, profound loneliness, fear, horror, torment. At times I feel like I’m trapped in a cage that’s been dragged underwater, and I’m drowning. Love is the cage, and madness, or trauma, is the water.

Nights alone have been a powerful restorative. I have an evening ritual. I clean and organise and cuddle Poppy and feel at peace and connected. The next day I can meet with my whole heart, however good or bad it may be. I’m not scraped raw and quivering with pain. This was my greatest regret in a previous relationship, that I equated the relationship to living together, and thought leaving one ment having to leave the other. I wish I had left the house but used the time to work on the relationship. Without living with their demons, feeling so unsafe and traumatised, I might have had more success recapturing what we’d lost. I intend to learn from that mistake.

Rose and I did this for a long time during our dating too, we lived 10 houses apart on the same street. That blend of together and apart suited us well and we flourished. Two partners with PTSD is an unusual challenge and needs a very specific approach. We are currently hunting for a room she can rent close by to replicate that time in our lives. Part of my plan to get as much of my life back on the easy settings as possible. We are not sure right now what the future looks like or how long we will do this. We spend time together every day, as a couple and a family. We will keep moving forward day by day, getting back into routines.

There are many hurdles yet before us. Welfare is one, they refuse to offer any rent support to Rose unless we formally, legally break up – absolutely the last thing we wish to do. Community mental health services are another, severely lacking in a sense of responsibility, compassion, or even basic customer service. It’s been a tough week but it’s also been so good to see Rose out in the free air again. Even in such a short time, the weight of institutionalisation was so evident. Out in the world there’s something more adult about her, more dark and wild and free and grounded. I fall in love all over again. Her beautiful eyes, soft hands, kind heart. She’s been so lost at times but she finds her way home. Darkness tears gulfs between us. Love bridges them. She is so precious and I’m lucky to have her.

Difficulty settings and disability

I have thought often lately, about the idea that some people seem to do life on a harder difficulty setting than others. I have been fiercely contemplating how I might be able to lower the setting in my own life. So far I have decided I am going to

  • Replace the jungle of mismatched containers in my kitchen with a set of no more than 4 sizes that stack with matching lids
  • Dig out most of the front garden, replace the shrubs with low maintenance succulents, and mulch it
  • Quit project based work and replace it with a smaller amount of gig based work
  • Meal plan for lunch and dinners
  • Have cooking days and freeze portions
  • Schedule all the chores
  • Create a nest space in the home for anyone coping with overwhelm – bed, laptop for movies, books, headphones, toys, blankets, Lego, and air conditioner
  • Limit Poppy’s access to toys and games, change the system to adults access on her behalf so not too many things can be spread across the home at any one time
  • Initiate a toy/activity rotation system
  • Limit the number of clothes Poppy has in each size
  • There are a range of significant disabilities in my home. It’s time we catered better for this.

    In other news, Rose is still in an awfully rough way but being discharged into my care on Monday. I’ve been instructed to simply ‘stop being her carer’ by mental health staff. When I’ve suggested she stay nearby instead of coming home where I have my hands full and a young child who shouldn’t be exposed to intense distress, I’ve been told by these staff that Rose is too unwell to be discharged to live alone, but not unwell enough for any other care option, and if I won’t take her they’ll send her to a shelter. Meaning I’m expected to care for her while being instructed not to care for her. I continue to value accruing my ‘lived experience’ in this sector. 🙄😒😠 {sarcasm font}

    Star has come down with bacterial tonsillitis and is incredibly miserable. And now Poppy has come down sick. I’ve spent most of day cleaning, meal planning, shopping, organising for Poppy’s birthday this weekend, and trying to keep my head together.

    It would be really nice if someone could unjam the difficulty setting from ‘hellish’ and move it back in the direction of ‘stroll in the park’. In the meantime I’m tremendously glad for generous friends, wonderful family, beautiful art buying customers, wonderful clients, and having a keen sense of the absurd. Because when you find yourself cleaning poop off a small plastic turtle after the least successful attempt to clean the toddler in a bath ever, you’re either going to burn down the house or laugh.

    Still choosing to laugh.

    Peace in the night

    Home, at night. Poppy playing in her bath. I feel a whirring fan in my chest start to slow, ease off, fall silent. I can hear something other than the blood rushing in my in my ears, the screaming fear. There’s such peace here, in the quiet house at the end of the day. I move about, cleaning and sorting, ear finely tuned to the sound of play, coming past the bath every few moments to check on her. Behind the sounds of laughter and splashing is a silence that speaks to me like nothing else in my world.

    I am reminded of living alone for the first time at 23. So lonely and so afraid of solitude, when I would return to my caravan I would find not terror, but peace. The silence would sing to me, vibrate with a kind of resonance. Each time I returned I would find only relief that the nightmare was not real. Being alone was not more lonely, only more peaceful.

    Rose is out of the ED and back in the psych facility again. It seems these terrible bouts of vomiting and high blood pressure are part of her current breakdown. No physical cause could be found. It’s an intense stress response if that’s what it is.

    I remain deeply worried about her and about my capacity to care for her as well as Poppy. I have never cared for more than one person at a time before. Even in the worst of Star’s eating disorder treatment, I could leave Poppy with Rose knowing they were both safe and well nurtured. I often feel very afraid and overwhelmed by the task before me.

    I don’t know how we will get through this. But right now, everyone is safe. The house is at peace. My tasks are simple ones, food, cleaning, cuddles, play, sleep. Nothing has been broken past healing or ruined beyond reconciliation. We are not alone.