Still kisses with saliva

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

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

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

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

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

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

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

Reconnecting with my daughter

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

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

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

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

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

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

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

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

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

The tide starts to turn

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

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

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

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

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

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

Disability and Employment

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

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

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

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

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

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

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

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

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

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

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

 

Our week of birthdays

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

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

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

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

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

Strings cut

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

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

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

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

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

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

Rose is back

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

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

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

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

Difficulty settings and disability

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

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

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

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

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

    Still choosing to laugh.

    Peace in the night

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

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

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

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

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

    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.

    Waiting for you

    Today tastes of spring. I find myself thinking often of my garden, aware it needs the winter prune to bring the roses back to size, and weeds have sprung up between the plants. I’m restless to reinvigorate it, it contains now the bones leftover by many different plans each toppled by the next. A old path still leads nowhere where potted trees used to rest. They’ve been taken out back now Zoe dog isn’t there to turn them into small sticks. Herbs have grown unruly and out of reach now shrubs are too large to pass between, or sheilded by the thorny remains of a miniature rose that burrowed under the entire length of the garden to throw up prickly arms without flowers at unexpected places. The most difficult patch, with heavy shade in winter and insufficient water in summer is bare where many species have been trialled but died. Only the arum lilies thrive there, today I can see the first leaves regenerating in the morning sun.

    Only my outer perimeter of roses, like a thorny moat, remains a valuable feature. A neighbour recently rampaged up and down the street, venting his spleen on everything vulnerable in reach. One neighbour had the harmless geraniums I’d planned for her torn out whole, the other her collection of trinkets and statutettes smashed on the drive way. To my ring of 6 foot high established roses he contented himself merely with tearing off some flower heads and scattering the blossoms.

    Nevertheless it lacks cohesion now, in colour, form, or theme, and my eye cannot find a comfortable whole anymore but jumps from aspect to aspect in a fragmented way. I look forward to revisioning and designing it anew. Perhaps a Mexican theme? Roses, succulents, and colourful statues?

    It’s been a hard, black week, but this morning is sweet. Birds are singing in the sunshine, my daughters are happy, and I’ve rested in bed all morning, rereading the wonderful Henghis Hapthorn series by Matthew Hughes. Between the bare patches and the weeds my white violets are in bloom. The last pomegranates hang on bare branches. Jonquils are small pops of colour and perfume among the tangle. Today the washing will dry on the line, the windows are all open to bring in the smell of a bright new day. The bees are in the rosemary.

    We are waiting for a baby, a new niece or nephew, to arrive. It’s a good day to be welcomed to the world. So much love awaits you, little one. Between all the sorrows and troubles of the world is also such beauty and tender joy.

    Ink Painting: The Aching Tides

    I made a little time this week for some of my own art, to ease a painful day. Star is having a tough week, and Rose and I went to a friend’s funeral too. There’s been a lot of big, sad conversations happening.

    This was made with a single colour ink, brushes, and a flex nib dip pen on Arches hot press 300gsm paper.

    It’s been very peaceful to be in the studio so much now my handmade book for prisoners is at that stage. Today Rose took both girls to the botanic garden with gumboots and umbrellas and I did some more sewing and painting at the studio. The physical pages are almost complete, next I will be back in my office for the digital work. My next projects are restlessly waiting for me, which is a good place to be.

    I am in love with a glass cube

    This delightful cube is my latest find. I have booked in to a visual art exhibition during the Feast Festival later this year. Feast is our SA Queer cultural festival and I’m very pleased to be involved. The cube is relevant because I’ll be exhibiting small sculptures as well as paintings this year. And everything I create will fit inside a cube like this beautiful, shiny example.

    Here it is in my studio for context:

    And this is what the whole display will look like in situ:

    A lovely horseshoe of glorious cubes! Clear glass, mirrors, lights, reflections… It is speaking to me and I’m delighted. Without that voice, the is no art worth making. It reminds me of my Broken City sculpture. I’m dreaming of wings and lights and shadows.

    I saw a GP today about my asthma and meds to make sure I was still on the right regime. He told me none of the antibiotics I’d been given were effective for a chest infection, which is why I’ve been so unwell these past two weeks. So that was a bit of a shock! Lots more rest proscribed.

    Meanwhile I’m deeply into my current project, hand painting a book. I spent today at my office scanning and editing the pages in Photoshop.

    Some alchemy has occurred and my stress is radically reducing. I feel calmer and more centered than I have in months. Time in my studio? Starting to recover? Working on a single project at a time? The meditative effect of painting for hours? Quitting most of my work over the past couple of months? Extra sleep and rest this week? I’m not sure. But I am clearer and less overwhelmed and that’s very welcome. I feel I’ve found my rhythm and I’m no longer feeling under terrible pressure or panic about project wrinkles that need ironing out as they occur. Whatever it is, it’s delightful. Another week or so of painting and editing and hopefully we’ll be sending a draft off for approval to all the organisations involved.

    Back into the Studio!

    I was well enough for a trip to the studio today! I’m still dealing with infection and asthma and on a stack of meds. I’ve never had an asthma episode this bad or this long before, it’s a bit scary. Going to the studio by myself – and driving again too, both felt strange and a bit worrying. I moved slowly, took precautions, and stayed in touch with Rose.

    But in the end it was wonderful. I bought more watercolour paper on the way, then spent the first couple of hours pottering. Sorting, tidying, cleaning. I went through the hundred or so pages of notes, tests, backup work, and proofs for my handmade magazine project Inside Voice, re read everything and sorted it into groups and two folders, one to put away, and the one containing everything I currently need. My mind is so much less cluttered now!

    Pottering is a delightful thing, it’s fun, it takes the pressure off, and as I do all those little jobs that get forgotten about when you’re busy and focused and under the pump, the space clears out, the lost tools get found again, the physical and mental clutter is calmed. All the papers are put together in a box, and labelled. I found several pairs of scissors and gave them a home, emptied two boxes of random things and cleared them off my floor, found all my notes and sketches for a handmade book that stalled and put them together in a folder, taped test strips into my journal and updated the index, started a new list of helpful things to bring to the studio, such as a small extension cord so I can sit at my desk and plug in my electric lap blanket on these cold nights. It’s slow, I rest often, I listen to music, and do whatever I feel like working on next.

    After a couple of hours of this, I feel settled. My anxiety has lowered, I feel at home and a sense of ownership and belonging has come over me. My breathing is raspy but not distressed.

    Then, I begin to paint and sew. The handmade book takes shape. Here is a sneak preview, neither the artwork not the poem are mine, they are both from prisoners (readers). I believe I have done them justice, so I’ve come home very happy. Hopefully I’ll keep getting better and get lots of studio time this week. ❤

    Zines and handmade books

    I think my new asthma meds are starting to work, it doesn’t hurt as much to breathe today. 🙂 Thought I would share a project with you I finished a little while ago, the zine (handmade magazine) made in my workshop by the members of a local queer youth Drop In.

    We had a really good time connecting over art supplies and exploring different things they wanted to say and different ways to express it. I first zine making workshops during the statewide consultation process I helped design and facilitate for the government last year, and of all the amazing submissions, it remains one of my favourites. Some of the entries brought people reading them to tears.

    Sometimes amazing art is about tremendous skill with the medium and materials. Sometimes it’s an obsession with capturing the light, with pigments or clay, with developing your craft age pushing your skills to the masterful.

    But sometimes it’s about the content. It make take 20 minutes with a biro and a folded piece of copy paper and still have the power to bring someone to tears. Zines can be great art in that way. Created in a few hours like this workshop, there’s simply no time for fretting about getting your prose perfect or how awful your drawing skills are, and it doesn’t really matter. It’s raw, imperfect, authentic. It captures something often lost in more considered, polished works of art. It’s a kind of consultation process in itself – what matters to you? What’s in your mind? It’s an ink blot analysis. When I give you this marker, what wants to come out of you? The speed at which these are made forces us past the anxieties that great art brings, instead of waiting for perfect words and images we speak, uncertainly, now. And we cross out, paint over, play with, interact with, what we’ve spoken. Zines are special that way.

    Handmade books are, for me, taking the zine into another space. Where the zine is cheaply reproduced, rough, raw, punk, DIY, uninhibited, the hand made book is more considered. It’s the zine, polished. My handmade books are text and image, the place where my passion for both combines. They are days spent painting or embroidering a single page.

    They are rough drafts laid out and arranged and rearranged to find balance.

    This is the layout of my current one, all artwork, poems, and articles contributed by prisoners and organisations who care about their health and welfare. It’s the prototype so so much has been learned along the way. I’ve been kept busy figuring out copyright, front matter, submission guidelines, editing long articles to fit the space, choosing commercial fonts that are highly readable for those with low literacy levels or vision impairment. It’s a labour of love, showing off every submission to its best.

    I always ask to keep a zine from every workshop, my collection is now wonderful and I bring some of it along to new workshops to inspire. I am very much looking forward to sharing the next zines and artbooks with you.

    Bagpipes for lungs

    I’d like to be updating you on my my projects, but it’s just my health. I got half way to the studio today before having a huge asthma attack. I had to choose between going to the doctor, the hospital, or home for my inhaler, or pulling over and calling an ambulance. Not easy! I started to go to the doctor, then changed my mind and came home. I found I could breathe provided I did shallow breaths through my nose. Rose met me at the door with an inhaler and we got the next appointment with a GP. He’s changed my antibiotics to a different type and said the ongoing infection is triggering severe asthma. So I’m now on a stack of new meds and a nebuliser. It’s going to be a fun night of waking every 3 hours to dose me, Rose has her hands full with me and Poppy to look after, and there’s the constant vague worry of trying to decide when it’s time for hospital. My chest aches and when I breathe I sound like a kitten attacking a bagpipe.

    But, I’ve got a soft bed, Netflix, the cuddliest bug around, and hopefully I’ll be feeling better in a couple of days. Fingers crossed.

    I’m so glad I’d already recently decided I can’t pull off a primary income for my family (at the moment). This time last year Rose was in hospital with a chest infection. My family has a lot of extra needs. I simply can’t check out for as many hours a week as a primary income requires. But I can focus on income streams where I can shine even when unwell or on call as a carer. But what I can do is take the pressure off a bit, earn enough to keep my studio open, help with medical costs, afford my shrink. It’s not what I was hoping. But it’s a lot better than banging my head against a brick wall every week. At some point you just have to adapt! It hurts but it’s also taking a lot of pressure off me. I’ve sold four artworks this week, booked two face paint and glitter tattoo gigs, and things are going well despite coughing up a lung. I still have my art residency with SHINE SA and feel a great sense of belonging with that community. A career doesn’t have to be primary to count. It’s isolation that does so much of the harm. I was thinking of the years I’ve spent hanging around mental health organisations, and how it’s been within a sexual health organisation I’ve finally found a genuine understanding of diversity, and a sense of being valued. I’ve got art exhibitions planned and some in the works, and as soon as I’m better I’m going to finish and show you this beautiful handmade book I’ve been working on. I feel terrible but I still feel part of life and that’s so precious to me. ❤

    Painting in bed

    All last week I was awake half the night with Poppy who was very unhappy with a throat infection. Pratchett, who died 3 years ago, has been keeping me company through an ebook on my phone. There’s an astonishing kind of magic there, that he can have been dead for years and still be present in a way that’s warm, human, and real to me. I fall in love with books all over again.

    Poppy is recovered now, full of life and somehow extra words and communication now she’s feeling better. She sleeps with her hand touching my back or her feet resting on my leg. I am often surprised at my own wordlessness with her. My world revolves around her like a hatchling in a nest, and we venture through day and night together, yet there’s few poems since Tam. Still stoppered.

    It feels like I haven’t met her yet. I don’t know who she will be or what worlds she will walk. Sometimes I live so much in her future I forget she is here now. I remind myself to wake up and look and she delights me with a grin and a kiss. She will never be this age again, never again be who she is right now. She’s astonishing.

    Rose has been sleeping upright in an armchair to help manage pain from her ear infections. I find myself awake in the small hours, trawling Facebook, unsatisfied, lost. I’ve read all the books I can afford to buy and I can’t stop looking for something, and can’t name what it is. At last I realise simply that I’m lonely. I message Rose, she’s awake too. She comes to bed for a little while and I snuggle into her warmth. For the first time in a long time I unpeel my spikey armor and bring my soft vulnerability to her instead of sharp, prickly fear. We rest in the dark, wordless, holding hands. Thinking not of the past or the future but simply present in the night, velvet soft and beautiful with the child sleeping next to us.

    I’m on day 8 of being sick myself, virus gone bacterial and dropped into my chest. I woke earlier this week to discover that a friend of mine, Amber, had died suddenly. She who survived so much suddenly taken from us. I spent the day crying in bed. I’ve spent the week in bed. I hope I’ll be well enough to attend her funeral.

    So much illness brings its own fears. Am I annoying my friends? Have I missed some underlying cause? I find myself picking at the threads of my life, trying to work it out. Why am I hurting? Where have I gone wrong? I’m so depleted – how do I recover? What do I need? The picking brings no answers, it unravels certainty, brings doubt to every choice I’ve made. The only thing worse than being sick is also being afraid everyone else is bored and out of compassion, and that maybe you’ve accidentally brought it on yourself. After a while, with an effort, I stop picking and remember that in the middle of the illness is the worst time to ask such questions. I’ve no brain for it. Rest, fluids, kindness. I go back to bed and buy myself another book to read. Help Rose manage the new and unpleasant ear medicine in the hope of keeping her out of hospital.

    Today the infection is worse but paradoxically I feel better. Good news is bouying me. I have new support and new projects on the horizon. I’m planning an art exhibition for later this year, I have a mentor lined up for my guide to multiplicity, and I’ve been selling art this week. I’ve borrowed a laptop while I need to be at home which has helped so much. Today I’m starting the painting for my handmade book for prisoners project, in bed.

    Chronic illness and caring complicate my work and career goals, but I’m finally adapting and finding paths through. Letting go of the things I can’t have right now, like the time to create a solid primary income. Instead figuring out what works around my needs and my family, how to have the resources to be on call for them and trickle in enough paid work to keep up with my studio rent and my shrink fees. (Thinking of Frida, painting from bed in her body brace) There’s a kind of power in being able to do this, to still engage, to contribute, to feel connected and chase my dreams even from bed. I’m about to close down some aspects of my business and open new ones up that better fit my situation and my skills. Figuring out a model that works for me has been a major focus for the past year, and it’s finally emerging, as is the support I need to make it happen. I’m excited to launch it soon.

    So here’s to life, my loves! It’s complicated at times. Full of grief, loss, sickness, plans gone astray. But also incredibly beautiful. I’m still a part of the world, part of the community mourning Amber, part of a team who cares about prisoners, part of a tribe who turn up with lunch and cry about heartbreaking things and laugh over a board game. I am here, in the heart of it, anchored by love.

    My interview about DID in the ABC

    Last year myself and two other systems got to know journalist Tracey Shelton. She’s a fascinating journalist with an inspiring career and she was taken by the stigma and lack of good information out there about multiplicity. It’s been wonderful working with her to put real and human faces to the experiences. Her first article about it has been published today.

    Dissociative Identity Disorder: what it is like to live with multiple personalities

    The interview process itself was immersive and in depth, exhausting and inspiring. It was a huge behind the scenes project last year that is just starting to bear fruit. It was such an honour to hear in depth from other multiples – not since the days of the support group Bridges I used to run have I had such experiences. Can you imagine that? Consider for a moment that you are gay and almost never meet or speak with another openly gay person. Or Christian, or adopted, or a wheelchair user… All people are different and diverse in some way and having a connection to peers is invaluable.

    The connection and support I experienced during this project rekindled my own efforts to humanise multiples. I have spoken just this week with a delightful editor who offers mentoring to get projects – such as my introductory guide to multiplicity – to the finish line. There’s many peers, advocates, and activists out there and in the Dissociative Initiative, all saying the same things: multiples are human. We deserve support and we shouldn’t have to live in fear. I’m so proud to be part of that message. ❤

    To read more, follow the link above to the DI website, or check out my articles about multiplicity.

    Meal planning and disability

    Everyone in my home is miserably sick and I’m coming down ill. Fortunately I’ve been doing a lot of meal planning and cooking lately, so there’s been plenty of soft cooked rice meals and soups in the freezer. Poor little Poppy has tonsillitis and a throat infection that’s gone bacterial, so she’s rather ill and has been running fevers for almost a week. She’s on antibiotics now and will hopefully start feeling better in a couple of days. Rose is finishing her antibiotics from her ear infection which is almost resolved, but is now coming down with the cold. Star has the cold which is an especially miserable experience when you have sensory sensitivities. She’s had a rough day and we’ve pulled out all our tools to help manage overwhelm so she can cope with eating and drinking. I’ve been catching up on sleep and cleaning all day. (Poppy’s throat infection makes her cough until she vomits, so there’s been bedding and clothes that need a good wash and dry in the sun)

    Since we’ve adopted Family Based Treatment to help Star manage her eating disorder, I’ve been organising 3 meals and 3 snacks each day for her. We’ve recently decided that given I’m putting the time and energy into understanding her dietary challenges, I might as well keep going. So everyone in our home has transitioned to the eating 6 times a day model, tailored for different needs. Basically I’m preparing a tailored meal plan rather like Lite n Easy and similar purchasable models. It’s quite complex in some ways but we’re keeping the family meal a shared one, and usually lunch as well. Everytime I figure out something that works I add it to our meals list, and I’m experimenting with apps that will convert meal plans to ingredient lists for easy shopping. I’m doing larger cooks every week of soups, savory muffins, banana bread and the like, and then adding daily cooks for main meals. Across the day is a range of vegetables, fruit, grains, protein, and dairy. No meal is served more than twice in a row, which is particularly important for Star to help reduce food aversions.

    The first thing that’s changed is that we have almost no food wastage at the moment. Scheduling meals and freezing leftovers in portions is keeping all the fridge contents moving before they can spoil. That’s helping with the budget. I find my lists of meals invaluable because even doing this full time I often find myself blank and can’t think of anything to prepare for a snack. I create a weekly to 10 day list of main meals and then roughly plan 2 days ahead for everything else. I simply can’t think or plan ahead further than that effectively, and options need to change depending on factors such as is lunch at home with a microwave to heat up a meal, or out somewhere and needs to be eaten cold?

    I’m realising how much mental bandwidth food prep can take, and how often overwhelm is behind not eating. There’s a certain level of relief at simply having food placed in front of you every few hours. Keeping blood sugar levels more stable is helping everyone in a range of ways, and so I’m starting to create a model and series of guidelines that will gradually become more routine and less hands on for me. (For example, meals and snacks should not be within one hour of each other, or more than 4 hours apart. Everything on the meal plan we’re using for Star should be served up at least once every 6 weeks, and served in as wide a variety of ways and flavours as possible to keep variety) Over time more intuitive eating will replace some aspects of the structure for some of us, others may always need a structure as internal hunger cues are not reliable or get overwhelmed by other factors. Right now the cue to eat regularly is helpful for us all and it’s certainly helping me with all the strain on me at the moment.

    Less creativity and last minute arrangements and more scheduling and limited options are helping make this complex process manageable. We are even starting to develop standard meals with friends that everyone enjoys and Star copes with, which means that creativity and novelty are channeled in different ways – my favourite recent creation was pumpkin and blue cheese pizza.

    The change in approach was far from welcomed at first but it’s working brilliantly and we’re continuing to tinker with it to tailor it to our various needs. As a high needs family with a range of illnesses and disabilities, it’s been an invaluable tool.

    Transformational Breakdown

    Hi everyone, I have so many half written posts in drafts at the moment it’s ridiculous. 🙄 Life has been weird lately. My psychologist called it ‘a transformational breakdown’. Haha. That means it feels like we’re having a breakdown, giving birth, and blooming at all the same time.

    One night this week we got very cranky while making dinner, drank a bottle of cider, switched to kids who felt stupidly ill because of the alcohol (multiplicity can be dumb that way) then found the couch, a blanket, and Star Trek Next Gen. There’s been a great deal of being very grown up lately and frankly it’s not all that good for us. One of the funky things about our system is that we can kind of shift into whoever is most needed. So if or family need someone unafraid to take a spider out of the house without making fun of them, we can be that. And if someone needs a whole lotta nurturing we’re pretty good at that too. Or research, or arty days in the backyard, or being firm about boundaries or whatever. There’s some things none of us are good at (coughadmincough) but we can adapt and respond to what’s needed of us, at least in personal relationships.

    The secret to making this work is kinda the same as the secret to making parenting work for anyone – looking for that Venn diagram overlap area of where your needs and the needs of the kids overlap. If you just meet their needs all the time you burn out. If you just meet your own you’ve got a kid in a 10 hr old nappy. But there’s a kind of dance to figuring out if we all go to the library on Tuesday that will give the eldest time to get books for her homework, we can borrow a new Charli and Lola for the little one and I can pick up the book of knitting patterns and start Grandma’s present, the kids need to get out of the house but I’m really tired so I’ll take them to the playground next to my friends that’s fully fenced so I don’t need to chase them and see if she wants to catch up for coffee…

    Of course it can’t all be overlap. Sometimes you do things simply because they need to be done, like dental appointments. Sometimes it is about one person’s needs – there’s no other reason you’d go to a dance by 6 years olds or listen to someone learning to play the recorder. 🙂 There also comes a point where we just need to do our own thing. We lived alone by choice for ages because being hooked into roles and having switches triggered by people around us was tiring and overwhelming. When you’re busy turning into what you think people around you need (or will like, or love) it’s hard to have a sense of self identity, to know who you are or what your own needs are. That’s true of everyone, although perhaps in our case a little more blunt. Sometimes you need to have nobody need you and to just see who turns up. Systems are self balancing, to the best of their ability, they switch out who they think needs to be out. My family are never going to need my poet but we need them out because they take care of our soul and renew our spirit.

    We can’t live life with one part forwards all the time without losing out on so much of the world. No one can look at the world through one pair of eyes, one archetype, forever, without missing so much. And while it’s a gift to be able to tune in to what someone else needs and turn into it for them, it’s also a kind of cage if not attended to with some care. Sometimes you need to annoy or even embarrass each other, to be weird, different, inconvenient, and entirely moved upon your own tides. Blue lipstick days. I’m here for you but I’m not here for you, owned by you, of you, made to fit your empty spaces. I’m stranger by far than your dream of a perfect partner, parent, friend, guru.

    I don’t buy the dichotomy we’re presented with – that I can be the best ever carer or I can care for myself. To choose between tuning in to another’s needs or my own. We do not recover well when our carers are in crisis and suffering. We are bound in their cages and suffer with them. If I wish to be deeply attuned, my own heart calls too. My life calls too. It’s not one or the other. It’s to listen or to not listen.

    “Nothing has a stronger influence psychologically on their environment and especially on their children than the unlived life of the parent.” Jung

    So, I am home, finishing EOFY business admin, having meltdowns, having awful fights with Rose because we’re stressed and broke, feeling trapped in the domestic role I never wanted. Hanging washing and more washing and having strange panics about the cleanliness of the house as if attention to the kitchen counters has become a metaphor for how loved I feel, whether my needs are also attended to. I read blogs about autism and books about giftedness and articles about eating disorders and synthesise it all into a treatment program that is working brilliantly, and at night I lie awake hating myself for not being at work.

    There’s hope for us. Today we took a break from the hideous interminable admin to chat with a friendly editor and mentor about our multiplicity book and imposter syndrome and how a blog feels generally manageable but a book is something more formal, official, tangible and we can’t quite transition, can’t quite stop researching and let it be a thing, incomplete and unresolved but good enough as it is. She laughed and we laughed and there was more common ground than difference. She reminded me a little of my late friend Leanne, who was also an editor and would have loved this project, if I’d been brave enough to tell her we were multiple while she was still alive.

    We are doing well. I am hysterically exhausted. Star is thriving, Rose has been terribly ill with migraine and ear infection but is finally recovering, Poppy is currently unwell with a chest infection and I’m getting very little sleep.

    I have withdrawn from work but I’m also hard at work on a new business model and I think I’ve finally cracked something I can actually do for the next 6 months while I’m also on call and caring so much… which is profoundly exciting.

    And I’m still working on a new exhibition for later this year. Holding onto bits of my own stuff and upskilling rapidly in how to run a household with multiple disabilities and challenges in a way that everyone gets what they need – including me. We are still here, still together, holding on. Still kind, still in love, still hanging in there, still believing in better days.

    I have no idea what’s going to emerge, but I hope the damn ‘breakdown’ part eases up soon.

    Sometimes vulnerability is the way back

    I’ve had a difficult couple of weeks. Stepping away from work has plunged me into terrible depression. Carer burnout kicks in fast, in the form of long mornings frozen in bed, unable to start my day, long crying jags, flashing irritation, suppressed resentment, and profound self loathing. Fear, frustration, and hopeless despair struggle for the upper hand. I’m caught by the chilling awareness of my own broken places, the insanity of my phantom terrors. Just as surely as I know the things I fear are not real, I am seized by them. Obsessed with them. Simultaneously tortured, and humiliated by my torture.

    I believe in welfare, believe in care for the poor, opportunities for those of us with disabilities, I believe in dignity. Yet I am drawn helpless, over and over again into a false but compelling sense of my own failure. I am home taking care of my beautiful girls, yet without the prospect of work and career I feel worthless beyond redemption. I had my chance and I’ve ruined it. I’ve let down everyone who’s ever helped me. I have no excuse for such chronic failure and underachievement.

    In darker moments I believe everyone I know is secretly disgusted and embarrassed by me. I am in anguish trying to prove I am worthy, that I have tried hard, that I am not a lazy, selfish, useless bludger. The pain is hard to describe, it’s searing, like a hot brand across my face. It’s deep into my soul. It’s a frighteningly powerful delusion.

    I’d not thought of it that way before this last week. I’ve turned my mind to a serious challenge – understand the territory Star is lost in, and devise a way out for her. And we’ve done it. Setting ourselves the task of reading a book or 12 articles about autism or eating disorders a day, we’ve absorbed enough to tailor a treatment that’s so far worked spectacularly well. I am so relieved I can’t put it into words. The sheer joy of watching the colour come back to her checks and sparkle to her eyes is magic.

    And instead of proud of myself I am devoured by self hate for quitting work, for being poor, for needing support. I’ve never thought of myself as delusional before, although I understand that it’s how thinking works. We all construct tiny models of reality in our minds, none of them vast or complex enough to capture the real thing. We are all deluded. And like all delusions, knowing it’s false isn’t reassuring, it’s just frightening and painful to have been so captured by something that isn’t even real. It’s a very lonely place to be tortured by your own mind.

    We’ve been reaching out more than we usually do, sharing more than we usually share. And it’s helping. Also spending time with friends helps me box back up the dangerous whirlpool of thoughts that snares me. Don’t think about work, don’t try to problem solve money or career. In company I find it easier to compartmentalise it. It gives me breathing room.

    In vulnerability I seem to be letting out some of the poison. There’s a kind of awkward confession to it. Having friends share their own madness with me, offering reassurance without expecting that to fix it is healing. Finding a way to put words to my terror of being judged by family and friends and feeling (not seeing because I can’t bear to look but feeling) them wince in pain from the ‘couldn’t be further from the truth’ madness that has me standing on cliffs, running from invisible nightmares, changes something in me, slowly. If the reality checking is sensitive and loving it helps. We know this from psychosis and this process feels exactly like that one to me. I’ve been here before in other ways, not beliefs but senses tangling my inner and outer worlds. The impossible dual truth I have to find a way to hold in my mind: it’s not real, but it’s real to me.

    It’s not real that my friend loathe me, that I’m a useless failure, that I’m lazy, not trying hard enough, pathetic, a disappointment. It’s not true and I know this. Yet it’s profoundly true to me, and that must be acknowledged too. Knowing it’s not real doesn’t make it go away.

    I’ve shared my distress with friends and family, unpicking it despite the insanity of it. The more I show to safe people, the less it bleeds. There’s no need to tell me how crazy this is, that doesn’t ease it. But being safe to be crazy in front of, that’s a balm when your mind is on fire. I know it’s not real, hold me anyway. Hold me. I’m in so much pain. Hold me.

    Friends share their own madness, the terrible shame of poverty, disability, or loss. I am less alone, not the only one on fire. Everyone burns somewhere in the night.

    Last week a younger member of our system shared her name with a close friend – the first person apart from Rose who knows her name. We tried this once before, different part, with our therapist. It felt like being shot in the chest. A kind of death. This felt nothing like that. It felt like planting a new flower in a garden. Natural, simple, simply the next step. No one was shot, no one panicked. One step closer to a life that doesn’t feel like hiding in plain sight, hoping for closeness while holding everyone back. Each step brings us closer back to our self. We get windows of time with no fire or pain. Time like normal time where we can breathe and plan and live. The darkness retreats to the edges of our life.

    We have a new psychologist and we’re talking about things long forbidden. Not trauma but something for us more vulnerable and unspeakable – giftedness. The potential and the vulnerability of being gifted, smart, capable, and utterly different. Repulsed by elitism and afraid of others’ discomfort and envy we’ve refused to even think about it most of our life. Now we’re reading about people who are strange like we are strange, people who can write at a PhD level but can’t make it through an undergrad program. We’ve opened the box and are using the words and into this unfamiliar space comes grace and gentleness. My terrible fear: that being smart means I should have figured out work and shouldn’t be on welfare, is gently tipped over. Not only is it okay to be smart and need support, being talented itself can be a difficulty for which you need support. I find it easy to do things other find hard, and very much the reverse. I thrive with intellectual challenges and emotional and creative expression. I die without them. The very thing that caused me problems applying for jobs (advised to downplay academic achievements, remove training from my resume, constantly told I’m overqualified despite having no qualifications) is a difference that brings its own problems. Most forms of diversity operate in practice as a disability. I’ve walked around for years with my wings bound, trying to hide what I can do so people will be friends with me and not hate me. If I switch the word gifted for anything else, say, multiple, queer, invisible illness, chronic pain, mental illness, I can taste how sad that is, how much it hurts, how concealment breeds shame.

    We steer our ship by desperate, painful questions, ‘why are we the way we are?’ ‘What do we need to thrive?’ ‘Is it okay that we are on welfare?’ For the first time in 10 years, we can sometimes believe that yes, it is okay. We have done our best, done well, not failed, not let anyone down. We are okay. It’s okay that we need support. We are okay just as we are.

    Star is having rough time

    It’s long past time I did an update about Star. It’s not easy to write and this is about the 5th draft I’ve worked on. First – the good news. We have had the first stable week in 9 months, since I quit work, pulled Star out of school, and started an intensive treatment 10 days ago. She has responded to it magnificently, we are already seeing improvements and are ecstatic to have found the right track at last. We have a team of support personally and professionally and we will continue to refine the approach over the next few months of recovery.

    The knee injury last year started a mental health decline for Star that we have struggled to stop. She faced multiple challenges across many life areas – busting up with her boyfriend who went on to date the girl who injured her and then denied it. Having her reputation harmed by a boy who lied about her. Being ‘slut shamed’ by a group of guys who bullied her. School went from being her safe place and haven to a misery. Her mental health disintegrated and she found it harder and harder to eat, drink, and look after herself. We wound up in medical crisis with chronic dehydration and lack of food, the start of purging, warning signs of heart problems, disrupted sleep, mood, thinking, and memory. We tried lots of approaches which didn’t work, or didn’t work enough, or even made things worse.

    The approach that is working is called Family Based Treatment (FBT). It’s intense and at times incredibly stressful. Star is with someone at all times, and required to eat 3 meals, 3 snacks, and drink 6 cups of liquid every day. Sometimes that is pretty easy and sometimes it takes everything.

    We have bounced around the public mental health system, through emergency departments, ACIS, SEDS, a number of possible diagnoses and various specialists using the money originally fund raised for her knee surgery. We are making progress on the jigsaw puzzle of how we got to this level of crisis and what to do about it. There’s a number of diagnoses being explored to help us develop the best approach. It is looking likely that Star is autistic – something often missed in girls because it presents very differently to boys. The chronic strain of trying to cope with and hide differences such as her sensitivity to noise, difficulty with change, and a very literal approach to communication has taken a toll on her mental health. We are currently in the process of formal diagnosis with a specialist psychologist.

    She is also likely dealing with a type of restricting eating/feeding disorder called Avoidant Restrictive Food Intake Disorder (ARFIDS) which in her case means her sensory issues with with things like the texture of food have led to huge food and fluid aversions. Most of us can make ourselves eat or drink something we don’t like every now and again. In Star’s case her aversions have been getting much worse over time, and after a while it simply becomes impossible to make yourself eat and drink when you find it revolting and distressing. We are working with a team of people to help tailor the Family Based Treatment around these issues and hopefully she will not just become more medically and psychologically stable, but we will also be able to help her desensitise so that the whole process of eating is much easier and she can be back in control of it herself. Our backup plan is inpatient treatment in a hospital interstate. We are also digging into her long history of digestive issues (she was premmie and very unwell as a child) and gathering scattered medical records to try and understand these issues better. It may be that something such as a food allergy has been missed which is causing chronic pain and nausea. The more we know the better we can tailor the treatment.

    Eating disorders and restricting are often very difficult to understand, for the person who is struggling with it as well as others who don’t know what it feels like. There are a lot of myths and misinformation out there which make life a lot harder for everyone. Star is not merely being stubborn or in a power struggle with us. Star has a strong needle phobia and yet at one point recently was submitting to a blood test in the emergency dept rather than drink a sip of water – it is that powerful and that hard for her at times.

    I have had to overhaul a lot of my parenting approaches and go back to a basic principle of ‘do what works’. Our gentle trauma informed care approach has had to be modified to fit a very authoritarian ‘I know better than you what you need right now’ approach as the starvation has a severe impact on judgment. Watching Star sit in medical appointments apparently indifferent to the health risks has been chilling. And so far the signs are all extremely promising. We are seeing significant improvements for Star already. She has worked incredibly hard – all meals and drinks taken in and no purging. We are seeing signs of our bright bubbly girl again.

    It is not Star’s fault she has struggled with this so much – that sounds so obvious and yet when faced with someone who seems simply stubbornly unwilling to take a sip of water, it’s hard to remember that no one chooses to have an eating disorder. She is a brilliant, diligent, caring young woman, and devoted sister to Poppy. It has been a roller-coaster for the past few months and I expect it will be more the next few too. But right now, the signs are good that we are on the path out of this dark time in her life.

    Morning in bed

    This morning both girls are playing on my bed, tickling and giggling. Star sits Poppy on her lap and they read a book together, Star doing the sentences and pausing for Poppy to fill in the animals.

    Outside my window our stubborn pomegranate tree is golden and starting to shed leaves. Through the white curtain lace it’s a spectacular sight. I’ve cut it to the ground several times over the years for not fruiting. It regrows each time. When I finally bought a replacement it suddenly produced 5 fat red pomegranates. It’s a pathetic output for a big tree, but I only eat about 5 pomegranates a year anyway. I gave the new tree away.

    There’s eggs and bacon in the fridge for breakfast, warm dressing gowns for trekking out to the cold kitchen to put the kettle on.

    After a month of feeling our family is on fire, it’s sweet nectar and I drink in every moment. I love this family with all my heart.

    Poppy continues to looks stronger and healthier by the day. Star has had her first stable week following 9 months of unfolding crisis. This morning there’s laughter in my house. Rose is away early to the markets, planning a baby shower for my sister. There’s life instead of fear and pain. My heart rests. My heart sings.

    Art book in a prison

    There’s a lot going on at the moment I haven’t found the right words to share about yet, my darling Star has been in crisis. I will, but I wanted to share some things that were wonderful today.

    Firstly, Poppy is recovering beautifully. ❤

    She is a changed kid since the surgery to remove her 4 rotten teeth. We are thrilled. Within a couple of hours of the surgery she was eating again! The ear and throat infections are gone, the very pale face is getting colour again, and she laughs again! We missed that sound so much. It’s been a delight to watch her recover.

    The other wonderful thing was today I was allowed to visit some women in a local prison and consult with them about a great project called Inside Voice, which I’m working on. I love consultation so much, it’s a real joy to listen to people’s experiences and reflect on their ideas. I took in my art book Mourning the Unborn, watercolours and a range of ideas and example styles to show them. They were a treasure trove of information which not only validated the approach we’d been planning (always a nice bonus!) but extended it with new ideas and observations that will add a great deal of value to the project in the future. They’ve chosen the style, theme, editorial approach, and illustrations that will guide the project.

    I’ve nearly got everything I need now to start the next phase of Inside Voice, laying out and hand making all the content into a beautifully illustrated art book. I am just waiting on a last batch of images and then painting and sewing can begin. I’ve had my sewing machine serviced, I have new threads and extra large needles, I’ve chosen the papers, everything is ready. I am very excited about it.

    Oil Painting: Once I had lain alone

    Rose helped me get to the studio for a few hours last week, and I finished this oil painting. It’s a new version of an ink painting I created for my TEDx talk. It’s about a time in my life following a breakup where couples everywhere hurt to look at.

    The title is from a poem The Butterfly Token by one of my favourite poets, Maurice Stradgard. I bought his book The Nailing of the Right Hand when I was about 13 from a huge book sale at the local library; the cover intrigued me, it had poppies. I fell in love with the poet and his beautiful poems about love, loneliness, self doubt. The book has been out of print for years, the only other book he published I’ve never seen available anywhere, even second hand. The author himself is almost certainly dead now, his domain name and WordPress site were bought years ago but never used. My book is hand signed and has been treasured. I was never able to find a way to send him a letter to say thankyou. I would never have heard of him or his work without that chance encounter. So much that is precious simply slips us by if we don’t look for it and treasure it when we find it. The whole world is a rain of beautiful, brilliant, illuminating treasures, fleetingly brief.