Parenting with Trauma

Having our whole family sick together is an exercise in the logistics of rationing and portioning a tiny amount of energy to extract the maximum benefit. If I take her for an hour late tonight, then you do the morning, I’ll get you a nap at noon then you take her to the park for two hours so I can work on my assignment… The shifting priorities of dishes, doctors, meals, laundry, and mental health. It’s considerably more exhausting than being sick without kids, largely because of the difficulty of getting enough sleep to properly recover.

Monday Poppy and I went into the city. Rose had important appointments and Poppy was full of restless toddler energy. We had an argument on the bus about her not biting me which concluded with her screaming while strapped into her pram and me not making eye contact with a bus load of strangers. She got her own back by refusing to fall asleep for her afternoon nap. Usually she’ll snuggle down in her ‘cave’ made by covering the pram with a cloth, and knock off. That day she leaned as far forwards as her pram seatbelt would let her to fight sleep. 4 times she gently drifted off anyway as I paced around Rundle Mall rocking and circling the buskers. Each time she’d slip sideways as sleep relaxed her, clonking her head on the frame of the pram and waking up with a howl. Gently tipping the pram up evoked rage rather than sleep, and the fifth time she started to fall asleep I stopped and tried to gently settle her back which cued 20 minutes of hysteria.

I thought she might fall asleep in the art gallery but unfortunately that was the end of the whole idea. She talked to the other patrons, wanted to know all about the art, and once we found the kid’s studio space spent a happy hour cutting a sheet of paper into very tiny pieces.

The studio was set up to invite self portraits, with mirrors and oil pastels. This was mine:

I was glad of the space, it’s the most at home I’ve felt in the gallery.

I’ve realized that PTSD has interrupted our usually very calm parenting approach. Kids this age can be intense, they have huge feelings, test boundaries, and have way more energy than seems sensible. Poppy is fearless, explorative, passionate, creative, and stubborn. Generally Rose and I navigate these traits patiently and with appreciation of their positive aspects. But when she hurts us deliberately we’ve both struggled and the conflict has been charged and difficult to resolve. We’ve been worried about what it means and stressed by our own responses. I in particular lose patience and get angry, but Poppy isn’t easily intimidated which leaves me in a bind where I either behave in more frightening ways until she’s cowed and takes me seriously, or I find another way of approaching this. It speaks to the heart of parenting approaches to obedience and discipline. Do children follow instructions because they are frightened of us, or of the consequences? Or because they are connected to us and trust us? Is it appropriate to scare your child? If so, when and how much? Are boundaries about anger or love? Is breaking the rules or pushing the boundaries about immaturity, defiance, conflicting needs, forgetfulness (it’s easy to over estimate the memory capacity of a small child), or something else?

I’ve been starting to do a bit more reading on parenting her age group and it occurred to me that Rose and I are generally excellent at not taking difficult behavior personally, setting boundaries with warmth, and redirecting troubling behaviors. So when Poppy was getting into constant trouble for climbing furniture in the house, she now has a climbing frame outside for her to monkey around on. But when she hurts us there’s no such framing. We see no positive aspect to such behavior, no legitimate need looking for expression. We talk instead about her being mean, we privately discuss her sensitivity to our stress, her restlessness, her trying to get our attention. We’re troubled by a normal child behavior and framing it as lack of empathy. It’s triggering, evoking memories of being hurt by others and we both move into threat responses. Rose tends to freeze and withdraw, I get angry.

It occurred to me recently we’re misframing the behavior due to our histories. Most children this age want to roughhouse. Wrestling and tumbling and play fighting is a normal developmental behavior. Engaged with care it’s a place for learning about how to hold back and not hurt each other, how to apologise and caretake when accidents happen, and it satisfies the touch hunger and intense energy of very young children. Learning how to wind down into calmness following rough play is a key part of regulating such excitable and energetic kids.

Last night when Poppy started to get rough with Rose who was crashed out on the couch with a migraine, I didn’t get charged. I chose to see her inappropriate behavior as a need for rough housing and set a boundary with patience rather than frustration. I told her Mamma was sick and could only have gentle play around her. When Poppy kept being rough I removed her to the bedroom not as punishment but as an appropriate location for rough play. I gently with her permission threw her onto the bed, threw a big stuffed lion at her and told her this was where the fierce and grouchy creatures play. She was thrilled. She ran growling at me to the edge of the bed, waited for me to put my hand in the centre of her chest, then braced herself for me to gently push her back, screaming with laughter.

Later that night with Rose asleep and me exhausted on the couch with Poppy, she started to rough play again and I forbade her from getting on the couch with me. For the first time she was easily redirected into quiet play and spend a calm hour making complicated meals with her toy food instead.

There’s no problem with her empathy, Poppy is an incredibly affectionate and loving child. She’s not unusually aggressive or showing signs of attachment damage or deprivation. In mislabeling her normal needs as something that disturbed us, we introduced a charge into our relationship that she gravitated towards. Kids do this without knowing why, they can sense it and it’s irresistible. It’s why they do mad things like grin at an adult who’s already at the end of their rope and angry with them. They are still getting a sense of their own power in the world and what they can and can’t do. Navigating our own trauma as parents is about recognizing blind spots like this, paying attention to threat responses needlessly activated, and prioritizing basic needs like sleep, connection, and companionship so we function as best we can. For me at the moment on bad days I’m dealing with chronic irritability and low grade suicidality. Sleep deprivation and feeling isolated turn my world black. Over and over in a thousand little ways we choose safety together, celebrate freedom and autonomy, look for loving ways to speak about the unspeakable things, and link into the world around us. Without our wider networks of friends, family, therapists, without kids rooms in art galleries, and foodbank, and doctors who see trauma survivors rather than welfare bludgers, we couldn’t do this. But together there is so much strength, sufficient grace. Enough to let us all grow.

Community Mural in Development

At my birthday party last weekend, my friends started this mural with me. I’ve wanted to paint murals for a long time, and trying to think of something fun to host it seemed like a good idea. I bought a panel of marine ply, undercoated with Rustoleum, and we used house paint brushes and bulk size artist acrylics in a limited palette (blue, red, yellow, brown, and white). I mixed the colours people chose and gave a bit of instruction on using brushes but that was it. The design – children playing in a tumble of autumn leaves – I drew on freehand with a sharpie.

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Those who wanted to join in chose whichever part they liked and painted. It was cool to see people experimenting with textures and brush stroke styles. The limited colour range keeps it all cohesive despite many different hands, and the limited palette means all the colours relate well to each other. The only thing I’ve noticed so far is a tendency for not a lot of variation in value (darks and lights) which doesn’t matter so much in such a cheerful piece.

I was hoping to create something fun and heartfelt to display in our backyard. It will cheer up and add colour to the play area for Poppy, and remind me of my friends and family who’ve added to it. I know it’s often stressful to make art when you haven’t done it in a long time, so I wanted to make it feel safe and meditative. Creativity loves a bit of challenge, but too much is inhibiting and creates frustration. I also reassured folks that I will be going over the design when it’s finished and outlining everything so there was no need to worry about imperfect edges or the odd smudge. They really do add to the texture.

I have been doing some research in the local hardware store and I think for future murals I will consider buying exterior paint for the added UV protection to help it last. I’ve been making more artwork on board rather than canvas lately, which I prefer for indoor or outdoor larger scale artworks, so this was a fun way to explore that.

I’m looking forward to finishing this and fixing it in place. Probably another 2-3 arty afternoons will have it done, weather permitting.

My birthday was harrowing this year, I spent half of it crying and was horribly suicidal. I’m glad it’s behind me and I’m going to put some real thought into understanding how I can deal with it differently for next year. So far none of my approaches have been great.

But my favourite part of this was those small moments when I could see someone else disappearing into the art, the steady even brushing of paint, blending into paint. Those moments are a kind of meditation and they are precious. May we all have many more of them.

To not be here for a little while, please

I would like not to exist this week.

My birthday continues to be one of my most vulnerable times of the year.

I’m not all that adult around my birthday. I’m 10 years old and so lonely I want to die. I’m traumatised and confused and out of step with everyone. I’m surrounded by people I can’t seem to connect with. I’m alien. No one speaks my language. No one touches me. My loneliness and vulnerability mark me as rejected and make me a target for bullying.

I have built so much since that time. My advocacy and this blog has been a huge part of that. I have a community.

Respected is not quite the same as loved.

I am in so much pain.

I am hiding it because I have learned to be ashamed. Because I am afraid of being hurt. Because I don’t want to pressure anyone. I don’t want to take, devour, consume. I don’t want charity, pity, resentment. I want to share, to be connected. To give and be given to.

There’s times I feel myself part of the world, woven into a web of many people’s lives, seen and seeing, connected, useful, of worth, wounded and imperfect but sufficient and loved.

There’s times I free fall. I can’t see or feel anyone. I’m alone in the dark. There’s a memory of pain in me so huge it blots out the sun. I was a child who wanted to die. My birthday is reliably a time I fall. Every year I’ve tried a new approach and every year at best it partly works. There’s no hole deep enough for me to hide from it. I can’t bear to ignore it, to mark it, to celebrate or hide. There’s no right answer, no way out of the pain. It’s miles of barbed wire and the only way out is through.

I wish it was different.

But I can find a way out of the shame and the silent trap. Hey there, lovely ones. This is me right now. I’ll be okay. Don’t panic. It’s not the end. I don’t need to be rescued. Don’t overwhelm me with eulogies. But be kind right now. My moon is dark. Drop me a line. Offer a hug. Invite me for coffee. Send me a sympathetic we’ve-all-been-there nod across cyberspace. Tip your hat in the street, give me that goth-kin wink.

I know I’m incredibly weird and intense. I know I’m not the only one with my heart broken, baying at the moon. I see you too, I see your bewildered and terrified 10 year olds, being eaten by the night. It will pass. We’re all just holding on, my friends. Together and apart, friend and freak.

I would like not to exist this week. But given I’m stuck with it, how then shall we pass the time? I’ll bring the accordion, you bring the tambourine. I’ll bring the communion wine, you bring the hymns. I’ll bring the black lipstick, you bring the fishnets torn at the knees. I’ll bring the pack of cards, you bring the cheeseboard. We’ll meet under the bridge, in your dining room, on the front line, out back of the hospital. I’ll check you out of the ward for the afternoon and we’ll bum a few smokes. I’ll come to tea in a ridiculous hat and sit with my knees together. I’ll read you Keats and Slessor on the jetty over the water and we’ll cry into the wind. You’ll take my hand and I won’t feel a thing. Not a thing.

Using language to support parent infant bonding

Language is so powerful. When Poppy was born we found many people would frame our experiences or her behaviour in ways that were not helpful for us. It’s amazing how many of our common phrases ascribe bad intentions to the child. It may seem like nit picking to fuss over a word, but words build the story that impacts how we understand each other. They create the filter through which we interpret each others intentions.

I first learned about attribution theory in uni, studying psychology, and a lot of things clicked in my mind about people I’d known. Most anyone when depressed or overwhelmed sees the world and other people through a filter that makes the innocuous seem hostile and the mildly difficult downright sinister. Some of us are more prone to this more of the time, living in a world where grey runs to black. How we feel can strongly change the way we interpret others and the world around us.

Many of the stories created by common phrases used about children would pit Poppy against us, as if she was indifferent or even cruel. People would say things like she was “being a jerk” if she wouldn’t stop crying, was “too smart for her own good” if she climbed something and fell off, “had us wrapped around her little finger” if we went to comfort her after she fell over.

On one level this is a way to be light-hearted about the stress of parenting, laugh it off, and validate how awful and exhausting it can be! But for some, in the context of stress and sleep deprivation, this can also take the relationship between parent and child into dark and risky places.

It can be difficult to understand just how painful things can get if you haven’t been there. In the early months of Poppy’s life, I was often sick, very sleep deprived, and feeling at the end of my tether. I’ve noticed that a kind of flip in thinking can happen when things are really bad. If you feel stretched past capacity enough, at some point it feels like it’s not possible for everyone to survive. Survival instinct and maternal instinct start to contradict each other. The maternal (or parental) impulse to protect and nurture is powerful and we tend to see it as the norm. But it’s not always the way, and when threat levels are high and bonding is distorted it may diminish or become secondary. The impulse to protect the child may dissipate next to the sense that there’s simply not enough resources for everyone.

Things can get really desperate if the child’s behaviour is framed as a threat in some way to your own survival. The shift in thinking from ‘we are all in this together, having a tough time’ to ‘they are sucking me dry’ is a risky one both for the relationship and the child.

This interesting article, the neuroscience of calming baby explores what’s going on behind a common phenomenon – babies are calmer when carried and held but will often become distressed when put down. It talks briefly about how important it is to understand that this is an inbuilt mammalian response, to “save parents from misreading the restart of crying as the intention of the infant to control the parents”. Soberingly, this is important because “unsoothable crying is a major risk factor for child abuse”. This is not in any way to blame a child for being harmed, or to excuse harm done to children. It is to examine the context in which otherwise devoted, well intentioned parents can find themselves struggling with furious impulses or not coping.

Ascribing bad intentions to a baby starts to activate a sense of threat, that the child is wilfully harming the parent, deliberately denying them basic needs of food, sleep, and relief from distress. When bonding is good and parent needs are getting met, these things don’t matter so much. But in harder times they can contribute to a sense of being tortured by the child rather than by the circumstances. It’s desperately important to see a child’s distress as distress rather than an attempt to control, manipulate, or do harm. Language is part of how we do this, helping to interpret and contextualise so we don’t distort what we’re experiencing.

It’s also critical not to set up impossible expectations such as “when you cry I will make it better for you” with a child. Overburdened by this sense of responsibility, parents are at risk of feeling intense distress in the form of failure, agitation, and frustration if confronted by distress they cannot sooothe or silence.

Rose and I translated a lot of common sayings when we encountered them. Someone would say to us things like:

  • “She’s fighting sleep” and we would agree but shift the intention- “yes, she’s struggling to sleep today”
  • “She’s not a very good baby” becomes “she’s having a hard time settling at the moment”
  • “She’s got you wrapped around her little finger” becomes “she sure is a little cuddle-bug”

This was incredibly helpful for me in a few instances where I was struggling. In early weeks I was prodromal (warning signs of psychosis) partly due to severe sleep deprivation. I would get Poppy confused with Tamlorn, the little one I miscarried. Rose and I would tag team Poppy all night to give each other some sleep. There have been times I’ve handed Poppy over in sobbing distress and Rose has taken her out for a morning drive because my nerves are shredded by her crying and my nipples are mangled from her biting and I’m losing it.

It makes a difference to understand that Poppy is behaving as she is supposed to, not to harm me. Human babies often want to be held all the time and use crying to signal fear, pain, hunger and every need they have. It’s also a biological norm for infant crying to send us round the twist, and being able to see our own limits coming up without hating ourselves for them is valuable. Infant needs can be more than a parent can meet, or impossible to understand at times. Nurtured infants need nurtured parents and few of have invested in those kinds of communities before bringing a baby into the world.

Parent needs are deeply important to meet in order to buffer that sense of threat and reduce the fight/flight response being activated in distress. Staying out of crisis mode is partly achieved by treating adult needs as real and significant, and using language wisely to tell the most helpful story about the situation.

So we found it helpful to say ‘squeaking’ instead of ‘screaming’ for example. “Our little person is squeaking again” sounded less dramatic and helped us keep perspective. We talked about “witching hour” and planned around the time every evening that Poppy would be overwhelmed and inconsolable. We used baby wearing to manage her desire to be close in a way that reduced our fatigue and back pain, learned how to rest her face on our shoulder so her screaming didn’t go right into our ear, and use as a mantra “I’m here with you, you’re not alone” in place of wanting to fix it when nothing was working.

In our case, ‘colic’ was managed by reducing stimulation. The lights went off every night at 6pm, Poppy had a warm bath as soon as she started becoming distressed, and we didn’t go out in the evening for many months until she passed through the phase.

Language is a big part of what helped us navigate these huge challenges well. The risk of psychosis in the early days, serious difficulties with breastfeeding, and a baby with undiagnosed functional lactose overload and colic caused by sensory overwhelm. Combined with 2 deaths in the family and a range of illnesses for Rose and I, it was not an easy start. We were and are ecstatic to have Poppy, she is an absolutely beautiful, loving, curious, adventurous child. Tending to the stories we told and the language we used helped us to bond together during those difficult times.

Many creative projects

I made it into my studio for a few precious hours today. I bought this lovely drying rack for hanging wet artworks, and worked more on my illustrated poem project. You can see some of the pages drying on the new rack here:

I have been often ill lately with high pain levels and have not had as much art time as I’d hoped. The top priorities I’m keeping up with: my time with family, my studies, work gigs of various kinds.

I was very pleased to collaborate recently with the Greens SA and paint creatures of the Great Australian Bight during a listening post. Illustrating campaigns that are close to my heart is a special joy.

I was also honoured to be part of a panel at Uni SA about alternative responses to psychosis. I spoke from my Psychosis without Destruction perspective. I gave a brief illustrated presentation using journal entries from my first two episodes, and the body painting I did during my second episode which resolved it.

I am keeping up with my public health studies and learning French. I’ve just handed in an assignment exploring the social determinants of health and proposing an intervention intended to reduce cardiovascular illness for people with severe mental illness.

I was planning an exhibition for my birthday but I’m going to push it back a month or so and see how my health goes. I’m happy with my priorities right now. Family, study, and work are all going well and art and other projects fit in where and as I can. 💜

Poem: Leaving open the doors

Recently, I sat in an office and unraveled a complex dilemma. 
The woman sitting me responded, saying “What I’m hearing
is that you are trying to find a way to engage health
without colluding with those who have oppressed you,
and without contributing to the oppression of others.”

I blinked and then
Cried.

Yes. Yes that’s what I’ve been trying
To put into words the last 10 years.
My refusal to cut the tie
That binds me to the common humanity
Of the most irrelevant and destitute because
They are me.

When I manage to find a door
Through the insurmountable obstacle
I try to leave it open
Behind me.

This blog has been my public road map
Not as a set of instructions or moral imperatives
Or proof of my superiority in some way
No more no less than an honest account of how and where
I found the doors
And the courage to walk through them.

The times I succeeded and the ones I failed. 
In honest truth telling, I believe we are set free. 

You are skilled, she said
At behaving ethically despite being outcast
You are afraid and uncomfortable of the challenge
Of doing so when you are embraced and approved of.

Ah.

All the long years, trying to get in to the town
The truth is I’m also terrified of it
And run back to the wilds, alone but free.

This is about oppression, she said, and power.
My teeth lengthened in my smile
And I promised
To write and paint
The unspeakable things again.
To hold fast to the light burning
To speak my name with blood, pride, and dark joy.
To break the invisible all powerful rules
Seek life
For me and all my kind. 

Love amidst pain

At times when I’ve been very broke, I’ve felt that a troubling and difficult to name challenge that has been not the obvious stresses – affording bills and medical care and food, but a subtle one. Judged according to choices it’s assumed I’ve made, my life, my clothes, my presentation fits me to a standard. If there’s only one pair of jeans in the op shop that fit me, their cut and colour says little about me except my lack of choices. When I’m with others who’s choices are also constrained, this is understood, and we envy each other when personal taste isn’t inhibited by limitations. It’s a joy when we can forge something close to our sense of self from what we have.

Today I have been resting. My mind is burned out trying to understand some things that are extraordinarily painful to me. I have read and watched movies and curled up on the couch under a blanket. The weather is glorious, late summer and soft sunshine. I am recovering from a horrible head cold that has made my whole body ache. And I am thinking about my life not in an abstract sense as if I could have done anything, but from within the constraints I have faced. The long and terrible illnesses, the homelessness, the loneliness, the terrible suffering and self loathing I am still recovering from, growing up queer and unsafe. I think about the cards I was given and how I have played them and I am at peace. I have an incredibly beautiful life. I adore my family. I have navigated such heart rending and terrifying challenges to be here and to love the way I do from a heart so starved and shattered. It is so far in many ways from what I wanted or hoped for. But it so glorious given how lost I could have become. Queer and Christian can be a death sentence, and when I return to my old home at times, I can see myself on the floor of the bathroom like a ghost. I am curled around myself screaming silently and begging god to undo what I am. I have faced the absolute terror of hell and exile to stand here today. I have faced suicide and self harm. I have faced a loneliness so deep and profound that it felt like it was erasing me from the inside out. I have navigated multiplicity and psychosis, caring and needing care, the loss of friends, the heartbreak of not finding my place in employment.

I would not have chosen this path. I would never have chosen homelessness, or chronic pain, or my string of failed attempts to haul my life back onto the track I was aiming for. I would not now choose our vulnerablity, our financial insecurity, our public housing. I aimed very high and where I’ve landed so far, it turns out, is incredible.

I adore my daughters with all my heart, and the joy in parenting them surpasses anything else in my life. My beloved Rose and I are restored to each other after the terrible strain of last year. We are learning that knowing each other for 6 years does not mean we know each other. That love is in asking the questions and listening closely to the answers. The hand reached across the gulf of miscommunication and expectations. There’s so much love here.

Yesterday I went to a wonderful talk by local artist/illustrators about how they navigated their work while raising young children. It was wonderful and I learned so much. I also realised that their process was only fitted around children, while I was trying to build mine around illness and disability and many other things. It has not been easy and yet I am finding a small slow path.

Yesterday I went to the funeral of someone I had not known very well, the husband of a dear late friend. I was not sure I would be able to go. Death is not something I am reconciled to since I had my terrible breakdown. I felt angry and humiliated by my vulnerability to it. Rose eased me into finding the thorn in my paw. I was terrified of my secret, nagging judgement that his life had been wasted. I recalled heartbreaking conversations with him about his lack of the spark of joy, his envy of my passion. He too, faced many challenges in his life. Only when I found this fear could I see that my block was little to do with him, but my own secret terror that in some way I couldn’t even find words for, my life has added up to nothing.

So I went to the funeral. They read a poem by my late friend. It hurt so badly it felt like I was dying for a time. My heart broke for his friends and family. My heart broke for my friend, and how hard friends can be to come by. How irreplaceable each of us are in the web of our lives. I thought of the millions of people in the world and how easy it is to be lonely. How hard it can be to listen as deeply and carefully as Rose and I are learning again to listen to each other. How life is neither all triumph nor all loss. I listened to the heartfelt eulogies by his friends and saw both his pain and his life in a softer and more loving light. I thought about my friends. I thought about how I would be remembered if I died today, the way I would not want my sorrow or my struggles to be the focus, but my love and the people and things I have loved and tried to learn how to love well.

I went to a therapy appointment yesterday to open in a safe place a big painful box about family and history and abuse and relationships. I cried so hard I couldn’t breathe or stay seated on the couch. I couldn’t stop. So much love and so much pain. Agonising dilemmas that are sunk deeply into my skin like razor wire. No easy answers or lights on my path.

When I left I splashed cold water on my face and hair and wrists. I took a cold drink in a small paper cup and I staggered carefully to my car. I sat with my journal in my lap and no words until the urge to vomit passed. I drove home carefully into the sun, taking the route with the most shade cast by trees, and crept into my home to hold my little girl and a hot water bottle for the rest of the evening.

Today I look at what I have built, what I have made of my life with what I’ve given, or found, or forged, and I am content. It is humble but no secrets rot beneath the floor. It is glorious. I am limping and dancing, both. There are many beautiful and wounded people I have built relationships with, of one kind or another, tended these like gardens that need work and effort and understanding. Learning how to listen, how to speak, and how to endure. Gratitude for those who came before me and made my world possible, those who changed my world so that queer people were not vile, those with disabilities were not repulsive, trauma was not a weakness of character, and that those who were sick or poor should be given a wage to allow them shelter and food. I remember their sacrifices and their work and I am thankful. I remember them when I choose to make sacrifices and to work towards a better and kinder world for my children and their children. There is so much love here.

Dancing with depression

I’ve been feeling raw and bleak at times lately. Today I was diagnosed with PCOS (a hormone condition) and PMDD (a sensitivity to certain hormones that causes a bunch of symptoms – my biggest struggle is severe depression on day 1-2 of my cycle. Given I already have mild endometriosis and severe adenomyosis, it’s making Poppy feel like a miracle and I’m holding her pretty close.

I’ve also had a severe digestive virus and a UTI/bladder infection which has knocked me for six.

It’s been a rough 6 weeks for me with many illnesses half of which have me quarantined and infectious. In between illnesses I’m happily enjoying downtime, and sunshine, and art, and chasing up friends for some much needed connection. I’m also about to be back in my studio working on a project dear to my heart which is exciting.

I’ve been rereading Lost Connections by Johann Hari recently which is a beautiful and well thought out book. Strangely enough in the light of it I’m about to try intermittent dosing of an antidepressant to see if it might help me manage the one two unpredictable days a month my head caves in. I don’t have a lot of treatment options left to try.

There’s a strange path I’m finding myself walking. Sadness, grief, loneliness all need to be heard and made space for. Given voice and listened to deeply. And the mind and heart also needs tending to ease them. It’s not a desperate fight against depression. It’s being open to it and the messages of it. Accepting and attentive and compassionate. While also working to be restored. The duality is strange. Burdened by a culture that sets us up to fight with our own mind and tries to numb our alarm systems instead of meeting needs and down regulating over sensitive alarms, I’ve swung far in the other direction of accepting whatever comes. Blown about on the tides. Actively working to change my state of mind or feelings is, in a way, as odd to me as most people find accepting and listening to them to be.

I have been lonely and sad at times lately. Two of my close friends are struggling with severe suicidal feelings. I miss spending more time with them. Did you know loneliness makes you much more susceptible to catching sicknesses? I’m reaching out when I can, being part of things. Glad for many good folks around me. Rose is, when she’s well enough, taking good care of me. We’ve been doing a lot of work to listen and empathise and reconnect and we’re feeling so much closer.

I’ve taken on temporary admin role in a beautiful online friendship group in crisis. I love groups and I’ve missed my groups lately. I’m hoping I can help restore some safety and sense of belonging.

I need some Narnia time out in the wilds, feeling the universe as a poem. I need my hands in earth, my feet in the woods. I need meaningful work and hope. I have a few more weeks before uni starts up again. I got a Distinction (84) in Epidemiology (honours level) so I’m feeling good about that, but I may drop a class to ease the stress if the health challenges continue. There’s a future there for me.

I’ve been struggling under the burden of several complex and sensitive old abuse issues for folks I love that I can’t speak about. A few recent days I’ve allocated to work or a Poppy adventure day, I’ve found myself spending most of it crying and calling helplines instead. I feel overwhelmed by the responsibility of navigating these relationships and conversations safely, compassionately, and fairly. Hopefully I’ll find a new support person soon.

In the meantime, in between sickness and sadness I watch the sun through the leaves. I touch Rose’s fingers, how soft and beautiful they are. I comb Poppy’s silky hair, listen to her stories, keep house.

And it’s the other way around too.

In between the most beautiful and tender life I suffer painful moments of sickness and sadness.

They weave in and out of one another. I’m here, hurting, and bursting with love. Holding it all to my heart.

My 1,500th post on this blog

Woo hoo!

I have handed in my last assignment and finished my studies for the year. Now it’s time to celebrate, I’ve been so long forward to writing this post, number 1,500.

Did you know I’ve written a total of almost 800,000 words since starting in August 2011? Wowee. In that time this blog has had over 100,000 visitors. That’s amazing.

At the Melbourne State Library for The World of the Book Exhibition. Image shows a woman in purple lipstick looking happy in a large library room several stories tall.

I used to write about one post (article) a day, over the past few years since my kids came along I dropped back to about twice a week. I now average about 55,000 words a year, spread across around 100 posts.

My topics shift and have been difficult to categorise helpfully for readers. Posts are often either about art, personal updates, or an educational/thought post, reflecting on or explaining something. Often these merge back and forth. The content is determined partly by whatever I’m encountering in my personal and professional life, and partly by requests from readers, moving across mental health, grief, love, parenting, and work… Everything is approached with an eye to authenticity, compassion, and engaging complexity and depth in accessible ways.

I knew very little about blogging, online accessibility, or SEO when I started out, which is pretty evident from the unhelpful titles I tended to use and the lack of image descriptions on photos. Looking back there’s plenty I’d change! But the task of updating and upgrading such a huge collection has been too daunting so I march along as it evolves, muddling through. What started as a way to update family and friends without having to copy and paste across multiple emails evolved into education and activism, and then most bewilderingly into something that closes some employment opportunities to me while launching me into consulting and freelance work. My readership has grown modestly, expanding across different topics and socioeconomic groups.

My most popular posts are often found through Google searches for help, especially around mental health. Here’s a few of them:

Blogging has been a strange, wonderful, painful, complicated, and delightful part of my life. I have strict boundaries about what I share, and there’s several threads of reasons why I’ve chosen to blog. My blog has been a voice, a call to connect with a broader community than I could find face to face, it’s been a way to humanise multiplicity and mental illness and madness. It’s been about developing inside out language – experiential language that shares from a place of how something feels when you are experiencing it, not viewing it from outside – reclaiming language about suffering from the clinical sector who observe rather than embody it. It’s been a legacy in case I didn’t make it. A set of keys to understand me if I wasn’t here anymore to try and explain my life, my thoughts, my suffering, my love, my art. A bridge, an invitation. It’s been about loneliness and alienation and wanting to ease that for others because they are heartbreaking and skin searing and soul crushing to experience and silence and shame perpuates devastating myths of singularity, of being the only one to feel or think or hurt or need or experience the world the way you do.

It’s been about the informal and imperfect, a zine instead of a book, a conversation rather than a lecture, a brush of the arm instead of a handshake for someone not sure how to be in this world or claim space or speak truths without doing harm or being harmed.

Sometimes I lose the threads. I wake up and can’t remember why I write here and I go silent for awhile. At times I’ve felt embarrassed by my relationship to my blog and my readers, I’ve felt anxious about any sense of my own need, more comfortable with the distance of altruism. I’ve celebrated numbing and felt strong when I didn’t want to write. I’ve been embarrassed by previous sharing or in a new context, confused and frustrated that blogging comes easy to me now but sources of income from these skills have eluded me. I’ve been depressed by the way staying grounded in the story I have the right to tell – mine – has left me with a body of work entirely wrapped around my own life and perspective. At other times I’ve celebrated that. Cast off the master narratives we’ve all heard before and gone deeper into something strange, raw, ideosyncratic, utterly my own. This is my experience, my life, my reality.

I made a large, strange, beautiful thing. 1,500 strong, and I’m proud.

Speaking of Suicide

Awake in the small hours this morning, enjoying the beautiful room here at the Langham hotel. It’s been a huge month for my family and we are feeling stronger and closer than ever. Soaking up all the experiences and processing so many conversations with new people.

I have been learning how to move through many different worlds with more grace. Messages of compassion, authenticity, diversity are reaching fertile ground. Doors are opening into new opportunities. The costs of this work are gradually becoming less, the transitions easier for me. I was raw and vulnerable the night before speaking, but not sobbing or sleepless with fear. Bearable costs becomes sustainable practice.

Yesterday at my work, we spoke of suicide and the aching gulf in those of us left behind. There was a moment of profound anguish, bewilderment, guilt, loss. In every space, every talk there’s a question brought burning in someone’s mouth, and if it’s safe to ask it will be asked. Sometimes it’s like a scream into the night, a supplication to a god, or the revealing of a hidden wound. Yesterday it was the aftermath of losing friends to suicide, and when the words were spoken, I felt like the floor fell out of the room into darkness and we were all strung like stars in the void, glittering with tears.

How do we make peace with such aching loss? How to bear the fear of future grief? How can we possibly understand such pain without also sharing it? How to live well with the ghosts of those we’ve loved who died before their time, leaving so many questions and taking all of the answers with them? What does it mean when people hide their pain from us?

There are moments when all that is different between us is suspended. Yesterday grief united us, here in this confused anguish is our shared humanity. Suffering and death a profound leveler. We are mortal and those we love, die. Sometimes alone and in terrible pain.

So we speak of compassion, dignity, connection, humanity, even in our places of work, those last bastions of self presented as invulnerable success. Not only for the benefit of those who struggle, but also those on the periphery, spared such agony but who do not wish to be left behind in doubt and sorrow. No one falls entirely alone, the cut threads unknit lives far beyond one loss.

We speak and unravel shame, ease the weight of secret burdens. The panel is gentle, compassionate, Georgie Harman lays a light hand on lingering guilt, Dr Eddie Mullen encourages learning and exploring – knowledge is power. They were splendid. I speak as someone who has been chronically suicidal and talk of the great gulf of fitting words to feelings, and of wanting to protect people around me. How deceits start small and with good intentions and grow large and overwhelming. I speak as someone who has cared for others who are suicidal, across a range of settings, and talk of the terrible fear of burdening loved ones, the twisted logic that draws darkened hearts into empty sacrifices that ease no pain.

The moment concludes, we who have been the midwives of it talk, listen, debrief, break bread together, shake hands, conclude. We part ways, step out into the rain.

I hope we honoured your dead, and gave some balm to the living. I hope you felt heard, held in dignity. I hope we served our goals well, safe shepherds for first conversations. The task of being human and remaining humane with each other is not always an easy one, and not without risk or pain. But it what we are for and where we shine brightest.

My art infiltrates the world

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Art sales from my Etsy Shop or in person continue to tick along, and happy customers leaving positive reviews is always a delight. I especially love it when I’m sent a photo or description of the art in its new home, that’s something special.

I was sad to have to withdraw from my FEAST exhibition this year when Rose got sick, but I think it will be all the better for it next year. I’m excited to be presenting a popup exhibition for Vanguard in Melbourne tomorrow called Smooth Seas never made Skilled Sailors, reflections on mental health, adversity, and resilience. Some works were first exhibited in She Dreams 6 years ago, which was a sampling of art documenting key experiences in the previous 10 years of my life, such as homelessness, mental health struggles and identity. About a third of the works have never been exhibited before, and I’m so pleased they have a home now.

Capture

Selling art is like I’m leaving little traces of my soul in other people’s lives, all around the world. My buyers and collectors are an unusual cohort of oddballs and doctors and patrons and poets. Sometimes they seem to have nothing in common except for resonating with my art. My work is in hopeful government offices and artfully decorated living rooms and bedrooms steeped in deeply private pain. And the art itself is like sea glass, tiny coloured windows into the world. People look not just into it but through it, at something they care about. It snags in the net of their story, brings something to light that’s meaningful and difficult to put into words, whether joyful or painful or so often a little of both.

It’s like sending messages in bottles out on the tide. The world is precious and beautiful and full of darkness. We are each of us alone, and yet not so alone or different as we fear. There are many worlds and wholeness cannot be found by walking only in any one of them.

I curate exhibitions carefully and their location with equal care. It’s simply not okay to exhibit works on such personal topics carelessly. My collections are chosen like a work of music, with a range of light and dark. They have variation in tone and voice. I understand entirely that some of the most painful are both the most resonant and those that sell the least often. That’s okay with me, when I first paint these, I often can’t look at them myself for many months. I understand why there’s some art you love, but couldn’t put on your wall. But when they are grouped in collections, they all link up to each other in a kind of web or net. The lightest and the darkest become linked, like lights and shadows. They fit together to create wholeness in a way no single image – or single story – could ever hope to do. Complexity and contradictions are rich in meaning. So even if most people take home the most hopeful and uplifting (which isn’t always the case), I am quite content because I know that linked in memory are the other works in the collection. The lights and shadows fit together even if only one is visible at a time. The dark and the light of the moon.

Last week I stepped up to a podium in Sydney, looked at the timer and realised my talk needed to be shortened by 1/3rd on the fly, and I didn’t rush. After 8 years of speaking I’ve finally come to understand that more important than what I say is how people in the room feel. If they feel safe and connected, my message speaks louder in the subtext than all the abstract explaining in the world about dignity and compassion. I illustrated that talk and there was such a buzz about the art afterwards and online I was inspired to learn more about the world of illustration and art that engages and communicates alongside text. It’s been a joy and I’ve found much that I am inspired by. I’m looking forward to learning more.

It’s been a long, strange, wonderful and tiring week. We have arrived in the hotel now and it’s calm and peaceful. Tonight we walked the streets in the rain and watched the lights in the river. My family are bundled into clean soft sheets in a comfortable bed and I’m typing on an old oak desk, thinking about tomorrow. Life is very beautiful. I’m hoping to create a sense of safety and meaning tomorrow, to give buzzwords like resilience back their grounding in sorrow and adversity and love. Art will be part of that, hopefully speaking when words are not enough, a silent presence when there’s too much noise to hear.

Why we need to value failure

I sometimes sit on panels or committees with very aspriational and ambitious intentions to help make some aspect of the world a better place. In spaces like that there can be a culture of success worship. We have all usually been chosen because of our perceived capacity to bring something of value to the table. People often showcase their ‘shiniest’ selves and hide mistakes, failures, struggles, and losses. This can have a number of difficult outcomes.

Firstly it often makes those in that space feel slightly disconnected and lonely. Aware of our own struggles and imperfections, or wrestling with the costs we are paying (however willingly) to engage, it is easy to be taken in by the masks of success, sanity, competence, and imperviousness around us.

Non-violent psychopaths – people who are often charming, glib, manipulative, and very harmful to anyone they have power over, thrive in environments such as these. They excel at looking amazing often because they are unrestrained by anxiety, morality, concern for others. There is no inner conflict, so like apex predators they are eminently comfortable and able to tailor the environment to suit their appetites at whatever cost to others. Stealing credit, undermining others, and presenting a brilliant facade to those in power over them are all skills well suited to success cultures.

Another challenge is that when we seek to improve circumstances for other people in some way, there’s a disconnect between the kinds of people chosen for the group who will come up with the solutions, and the kinds of people stuck in the problem. They are rarely the same people, even if they share some similar characteristics.

For example, I was at a conference a little while ago discussing disability. A couple of speakers with lived experience were sharing their stories and they were amazing experiences, heart felt, exceptional, incredible. Intended to eradicate the brutal impact of low expectations for people with disability, and I think they did an amazing job of this. In their company I was not even slightly ‘shiny’. My goals were smaller, my gaps wider, my struggles longer and more humiliating and complex.

I felt both uncomfortably raw and fiercely glad to be there, because these amazing success stories are so far from what many people live with. I held a space for failure, for struggle and loss. That is by no means my whole story! But it was an important one to share in that space. This is part of the reality we need to face and explore and understand. Success cultures make us afraid to invite it in or acknowledge it, when the truth is there are many failures on the path to wisdom. The capacity to struggle is directly linked to the capacity to learn.

Not all cultures admire success, some are quite the reverse. Any blogger can tell you that in some spaces agony and exposure gathers the adoring crowd, who drift once the blood clots and the wounds heal. In these spaces, sharing success is a stressful declaration of courage. Earning money from our skills risks censor and shaming, moving from the gift economy to a market economy may cost friendships and reputations. Our own frustration, ambivalence, and inexperience can mean we navigate such transitions with bitter fury rather than grace.

There’s nothing wrong with success, nor with the recognition of skill, experience, and capacity on which we base our understandings of rank. When I want to learn something I seek out those who are skilled. I look for and deeply value quality in every area of my life. When I am fortunate to have a skilled and passionate dentist I know I am so lucky. I put up with a level of unpleasant disdain to learn excellence in the preservation of oil paintings.

But expertise is always build upon learning, and learning means mistakes and reflection. My favourite quote about it is

An expert is (someone) who has made all the mistakes that can be made in a very narrow field. -Niels Bohr

So, here’s to having the courage to include the dissident voice, share the hidden story, and hold a space for the uncomfortable. Failure can be utterly terrifying, but also incredibly valuable.

At the HealtheVoices Conference

The flight was beautiful, I journalled and watched the clouds. I’m resting, soaking it in.

I’ve been to the Museum of Modern Art and wept on the floor at Hoda Afshar’s 2018 exhibit Remain, about the experiences of refugees on Manus Island. It’s stunning, and as much as I love public health and all the many things I do, it makes me deeply glad to be an artist and to want to stretch myself further, build my work in these spaces of such vulnerability. This is our history, being preserved here, the forbidden stories being told. Art can do that and I’m so in love with it.

Walked in the sunshine with new friends.

Washed the day from me, and slept.

Put on a beautiful dress I’ve never had the chance to wear, (non binary, gender queer people can wear dresses too if they want to) and shared a fancy dinner.

It’s a delight to be here. The alienation I’ve so often felt – in galleries, hotels, places inhabited by people with wealth, isn’t so present today. This is not my world, but I don’t feel at war with myself being here. It’s okay to visit. There’s no rage or burning anguish. I’m able to take in the pleasures and enjoy the luxuries. I’m curious and listening. Other people’s stories and experiences are always so interesting, the overlaps and the gulfs between us such rich food to share.

I keep thinking of the Pt Lincoln conference where I slept in my van in the national park because the bare hotel room stressed me. How hard it was to be there, how excited and exhausted and far beyond my own limits I was. The beginning of my breakdown, falling into the void. Months of anguish to come.

I can stand in galleries now and I’m not in burning pain. I can sleep in the hotel and enjoy the smell of the hand soap. I can walk into and out of this world without losing myself. I’m not numb and I’ve not gone native. I’m just no longer responsible for everything that’s wrong with the world.

I cried a little during a video call home with Rose and Poppy. It’s my first night away from her since she was born, and alone in my room is very alone indeed. I can hear the building air conditioning, and the gentle rumble of the lifts, but no people. I feel insulated like a single bee in a vast honeycomb. If I can’t sleep I might go sit downstairs in the bar to be near to people.

Next time I so want to see the National Art Gallery too.

Tomorrow I’ll be listening and presenting. I wish I’d brought my loom work project, I want to do something with my hands. There’s too many people to talk to, I sit in the middle of it all and let it wash over me like a river. Some of it I can catch and touch and the rest will flow past.

It’s hard to sum up what I do, my advocacy work across many domains. I haven’t used the phrase ‘multiple’ yet, I will tomorrow. I feel tired. I remember being at a conference 8 years ago and discovering 2 other multiples there, the joy I felt! Some people here have a very clear message, a very specific advocacy focus. I admire that. I think in some ways my work around adversity is that for me, but there’s other threads I’m still finding words for.

I miss my little girl.

I love this life. There’s so much joy in it. I’m glad to be here.

Advocacy, Success, and Vulnerability in Public

I wrote this post a long time ago and let it rest until I felt ready to share. I’ve wrestled a lot over the past few years with these issues and I’m making my peace with an imperfect and very human place in the world.

I miss this blog, but my world has changed a lot in the last year and I’m having to find new ways to engage and deal with new risks. I’m in a strange place it’s difficult to find words for – so much has gone right lately and I’m so ecstatically happy. I’m also so stressed, sleep deprived, and vulnerable. All the happy endings don’t take away the pain that came before, they just make it harder to accept and speak about. They add shame and confusion about why you’re still hurting when everything is so perfect.

I had the strange experience the other morning on my birthday of waking up and being excited to be online because I knew I was going to be getting birthday messages. For a few hours I felt special and cared about and safe. It made me realise even more strongly how unsafe I’ve been feeling lately. This blog is reaching a new audience, of people in positions of power and wealth. I feel exposed in a way I haven’t felt before. My lovely video about diversity in the workplace reached thousands of people and I found myself feeling embarrassed to be handing out my ‘face painting’ style business card to CEO’s and heads of industry. Thrilled and excited to feel like I have a career path, and also exposed and ashamed, even by this beautiful blog. I want to hide how I got here, how these skills were developed.

I use myself as an instrument. It’s a key aspect of my work as an artist/poet/writer, and also as a facilitator. I tune into my self and my body and I notice things. I notice when I feel defensive and I get curious about that. I notice when I feel afraid, or angry, or when I want to hide. I accept the feelings and the gut instinct but I try not to act on them until I’ve thought them through more. My world has changed a lot lately and I’m sailing through some pretty intense mood swings as I navigate the excitement and joy of that, and the stress and fear of it too. For the first time since I started sharing online I recently found myself gripped by an intense fear about having this blog public. The change in readership, or rather, the new readership has thrown me. People with power and money are people I find difficult to see as people and tend to see as embodiment of their roles, distant authority figures. My experiences since early years has been that they do not understand me or my life or the ways in which I am harmed while I am under their care.

I am practising spending time in new cultures, practising dealing with my prejudices and stereotypes, making myself make eye contact, speak as equals, see the people behind the roles, have empathy for them, understand them, find our shared humanity. Trying to get over a lifetime of instinct to flinch or snarl. Wrestling with a lifetime of thinking as these people as ‘the other’ and not being able see the ways in which we are alike, the burdens they labour beneath, the loneliness of their roles, the ways in which they too are brilliant, or unsafe, or wounded, or split off from their own truths. The contexts in which they live and the pressures that shape them. What does courage look like in that world? It’s different to what it looks like on the streets or in poverty. What does compassion look like? What are the things it is impossible to say, or even think? Where is the pain held and what does it look like? What does love look like in this place?

I came home a while ago from a shiny event with people who have done many impressive things and fought off the impulse to tear apart this blog. I felt unbearably exposed and wanted to go back and pull down everything in which I struggle, every post that showed my confusion or distress, every evidence of pain, every raw expression of loneliness or bewilderment or grief. It was unbearable. I quivered with distress. I sat with it and did nothing but listen to it. What is going on, my heart? Why?

Success has a kind of draw, I’m finding. A lure, like a light in the deep ocean, the fish come close and everyone hopes to be part of it, to have a little of the glittery phosphorescence rub off on them too. I watch people elevate or dismiss me depending on who in my system is out that moment, and whether we are showing our shiny side or our vulnerable one. I watch myself respond to the environment with pathological shame for my humanity, and a desire to conceal my awkward fumbling. I am not and never was uncertain. I am not and never was hurting. I am just shiny. I am success embodied. I am desirable. I never make mistakes. I never hurt. I am never lost. My livelihood depends on this. My life depends on this. Be the shiniest fish in the dark deeps. Don’t let anyone see anything else.

No one is saying these things to me overtly. But I feel the fear in the air, magnified through my own terror and my own vulnerability and my history of powerlessness. The carefulness in how we present ourselves, the concern about what others might be thinking or saying about us. Image management. A deeply ingrained caution, a reluctance to be seen. I feel it in my own impulse to run, in the way that we flinch from rawness, the honing of our masks of professionalism.

And the wrestle that comes with this, as I gnaw on my limbs and feel shame and distress. Why am I feeling this way? What of my values and beliefs? What am I turning into? Self destruction like a lure beneath the struggle, my own terror of being changed into something I do not recognise or respect. My instinct to set my life on fire rather than face my own darkness. I too, want power, and money, and crave status. I too, want an easier life for myself and my children, even at the cost of others ease. I too, can choose not to see what is inconvenient for me to acknowledge about the shadow I cast, and the prices we pay – or make others pay – for success.

The struggle itself is so worthwhile. There’s something beautiful in it. Even in the aspects I feel ashamed of. It tells me things about the world and myself, and about people and what we bring out in each other.

I resist the urge to hide. I retreat from being public at some times and in some ways, but don’t destroy the evidence of my humanity. I hold tight and look and learn and decide how I will respond.

I’ve also been able to see some things more clearly that had eluded me before. Like fish in water, in some ways it’s most difficult to understand the context you are most familiar with. I’ve spent so much of my life so anxious about the effects of power and the lure of money that I’ve not appreciated the effects of powerlessness and the harms of poverty. My ‘safe place’ to return to when I am afraid of my own ambition is not safe. It is merely destructive in a different way.

When I was very young
I was taught that power corrupts
No one mentioned the acid of powerlessness
The way it leeches you of worth
Hope, value, voice. 

I was warned of the dangers of money
But not of the grinding misery of poverty
The way it is like a thorn in each heel

The chronic pain of it, how it shapes your movements
Closes doors, leaves scars. 

(I think of all my friends who died of exposure,
And I remember all the ones who died for the lack of it. -Nick Cave)

I’ve been so pinned between
My fear of success and my horror at failure
Devoured by my demons in a place without peace
The truth is – there’s no limit to the number of days
I can sacrifice on the altar of proving myself worthy.

There is no way to live without risk
And the first loss is joy
It is lightness and laughter and play. 

Surely, if I have found ways
To be human despite all that’s befallen me
I can risk success?
If poverty has not destroyed me, I can risk money?
All my life I’ve feared losing myself, 
One hand on the self destruct button
Who says poverty and vulnerability are safe from harm?

They are no haven of purity, just
A familiar kind of hell. 
Just devils I know. 

A life deeply lived calls for courage
Sometimes courage looks like walking out onto the street
With no idea of where a bed or meal or kind face will next be found. 

Sometimes it looks like putting on my best clothes
Going to work, and getting paid. 

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.

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:

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.

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.

 

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.

 

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.

    Crisis

    My dearest Rose has had a breakdown, we are both exhausted and limping. She has been in a psych facility for over a week now. We were trying to manage the crisis at home while she crashed, until her distress became so intense she could not stop vomiting. 5 hours, 18 vomits later, some shots of anti-emetics and a lot of tranquillisers in the local ED and finally she could rest a little.

    Our poor little family is shell shocked and run down. Our tribe has rallied and surrounded us with so much love and support. We have both doubted everything hard. Our case worker tells me simply – you can be the strongest, most resilient people ever, sometimes things just go wrong.

    She is working so hard to understand how her world has collapsed, how to find her way back. Is she talking responsibility, a social worker asks me. I think of her desperately colouring in at 3am when the nightmares are so bad she can’t stop crying. Crawling into the shower clothed to find some kind of peace under the thundering water. They gave her a rubber band in the unit, she snapped it until her wrists bruised. Yes, I say, she is very responsible. She is overwhelmed. I am overwhelmed. Sometimes it’s more than we can bear.

    I’m lying in bed so deeply sad it feels hard to breathe. I type messages to people and don’t send them. I look at blank status updates and turn away without words. There is an ice cold patch between my shoulder blades, radiating a chill through my back, into my chest, like a spike into my heart. Aching with cold.

    We talk ourselves into hope. We talk ourselves into despair. Over and over. Holding tight, and on the edge of everything we have loved and built dissembling. We are on fire. We are broken and spilling into the night.

    Rose has messaged me from the unit tonight. She’s vomiting again, chronically, and her blood pressure has spiked. They are taking her back to the ED. I feel broken. They plan to send her home in a week. I cannot fathom caring her, as well as my children, and myself. I don’t know how to keep us all safe. She is the mother of my child. The heart of our world. I love her so dearly. I am so tired. So scared, and so sad.