Anniversaries of loss

Today is the one year anniversary of our first scan with Tamlorn, the one where we found out they were not okay and we would most likely lose them, which we did. I wrote here on this blog on March 13th in 2015; Some days are just sad. This week, Rose and I celebrated 3 & 1/2 years together. Rose has had a couple of anniversaries of miscarriages recently. Later this week we will have our morphology scan to check the health of our little froggie. Today I learned that another of my lovely friends on the other side of the world has recently suffered a miscarriage too. So much. Everything overlaps like currents in a sea.

I am creating my first self hosted solo exhibition and some days the doubts overwhelm me. I’ve learned to stop working on any artwork for a day or two at the point where I’ve come to hate it. Putting together a whole exhibition on a theme is new territory – exciting but also new. Mortifyingly exposing and personal. An exhibition about grief and loss feels like the strangest birthday party I could possibly arrange. And yet… it also feels right.  There’s so much grief in the background of my life at the moment, under the surface, forming the soil from which my new family is growing. I’m working on new artworks to balance the exhibition and they are a fitting way to mark these painful anniversaries that come towards me like trains, and slip past me like leaves in a river. There’s not enough time in the world to weep all the tears, instead they flow quietly from my brush in a corner of my lounge room late at night.

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A sample of an ink painting I’m working on for the exhibition

And the strings of heartbreaking stories like strands of pearls that unfurl in the threads following declarations of loss call to me. Some days I struggle with feeling my exhibition is silly and pointless. Then I’m reminded so many people have suffered this way, without acknowledgement, without funerals, silent and nameless and secret and broken.

So, it’s a little thing I can do in a big world full of hurt. Make a place where we can remember, where the grief is shared and public and accepted. It’s not much in the big scheme of things, but it’s something I can do, and maybe those who need it will find it.

Waiting for You Exhibition & Artbook Launch

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Everyone is invited to come and celebrate my birthday this year with an exhibition of my art and the launch of my little artbook Mourning the Unborn! The theme is pregnancy, loss & motherhood, so come and meet the artist and view beautiful, sad, and joyous artworks. I will share the unique experiences behind the creation of my artbook Mourning the Unborn.

Click here to listen to a beautiful interview on Radio Adelaide about my experiences and this exhibition.

There will be books and prints available to buy and cake to share.

The Opening Night (ie when cake is being served) is on
Friday the 22nd of April,
The Box Factory, 59 Regent St S, Adelaide – this is a wheelchair accessible venue
(map)
starting at 6pm

If you are on Facebook the event details are here. This is a public event, open to all.

The art exhibition is available to view between April 19th – May 19th on Mondays to Fridays between 4-6pm.

For those who cannot attend in person, I have prints and the booklet for sale in my Etsy Art Store.

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18 weeks pregnant

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Whoo hoo! I have quite the bump now, but have found that when I dress like this (the pants are about 3 sizes too big) it disguises it well and I look alternative/stroppy enough with my head sides shaved that random people don’t touch my tummy. This is making me very happy! I hadn’t realised how quickly the touching issue was stressing me, so I’m wearing bump revealing things at home or with friends where I can feel all rotund and earth motherly in peace, and clothes that hint I might tear off sometimes arms if they touch without permission in public, and I’m feeling so much more relaxed. 🙂

The Quickening is happening… This poetic term describes being able to feel the baby move – this occurs when they are big enough and there’s a reduced pond of amniotic fluid around them so they bounce off the walls so to speak. We are getting this! It’s very hard for me to feel in my tummy as my placenta is in front of the baby and blocking everything, but particularly at night when they are active, a hand pressed gently in the firmest area is usually rewarded with little flutters and taps.

There’s been a lot of stress around lately like rapids to navigate between calmer stretches, and one of the ways it’s been expressed is through nightmares. Rose in particular has been suffering from terrible dreams about death and loss, and by mid last week was getting swamped with fear about this baby. This time last year Tam stopped growing but we didn’t know that for several more weeks until our first scan. The fear that something is wrong and we just don’t know it yet can be paralysing, and a couple of tiny pops and bubbles and wing brushes from inside that might well be all in our minds is not yet reassuring. So kindly one of our best friends paid for an extra scan and we got to see the baby again, all alive and doing flips and waving at us. We were sitting in the waiting room beforehand, feeling that awful mix of very stupid but also half convinced that something was terribly wrong, telling the little one that later on the expectations will jump a bit, but right now all we want from them is a heartbeat and a wriggle. They certainly did that and we’ve been able to breathe again while we wait for kicks to be stronger and the next reassuring scan at 20 weeks.

In the scan they were positioned lying face down and very uncooperative about being looked at or photographed. So Rose sang ‘Somewhere over the rainbow’ to them and they turned around to listen and gave us a couple of photos. ❤

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I’m enjoying looking after our family and spending time with friends. We have had the most wonderful rallying around us, as we’ve taken someone in our tribe is embracing them too. People are helping us with food, and money, and car repairs, and driving places, and debriefing. We’re not alone, and although I’m still waking up crying because I’m not studying anymore and my goals around my degree and work that I’ve been putting so much effort into for so many years feel like they are further away than ever… I am finding myself surprised by how fulfilled I feel to be looking after my family. My mind is clear, I’m efficiently coping with several hours of admin a day, I’m asking for help and setting up routines and doing the intensive support that will help us all get through the intense crisis phase and into calmer waters. And when I have a moment here and there, I’m working on my exhibition and feeling quietly surprised that anyone else is interested in it, and a tiny glow of hope that I’ve created something people might connect with or find value or peace of some kind in.

My first book in print

I have just collected the prototype/artist’s proof of my first printed book and I am so excited! It looks even better than I expected. This is a printed version of the handmade art book I painted and embroidered last year. I have been working towards this for some time, hoping to create something that evoked the handmade, precious feel of my original, at least a little, but was a much cheaper option for people to purchase.

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There’s some small issues I’m going to sort out in editing before trying another print – particularly the loss of image in the centre as the booklet does not open flat. But I think in fairly short time I will be ready to put it up for sale here on my blog. The first!! Of many more lovely projects like this, I hope. 🙂 🙂 🙂

Tam’s tree

If I’d been able to put something up here three days ago, I’d have said we were going okay. Rose held my hand through the stall at the Pregnancy Loss walkathon. It was just like old days, her stalwart, me skittish. Not many people were interested in the stalls, but I did sell one print.

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Two days ago I’d have said I think we’ve turned a corner. I let go of all my fears and plans and expectations and found some sense of ground beneath me, the present moment full of light and glory. For a couple of days I could breathe most of the time and coax Rose into doing things that helped us both feel more alive. I so wanted to write that post and share that news. We made each other laugh, even in flashbacks and darkness, and the darkness was less dark, less painful, less total.

Today, I couldn’t sleep for hours. I’d settle then startle awake to some concern, personal or existential. I deeply want to caretake my people and my networks but I’m too heartsick to do it. I can’t get back on my horse. I can’t be inspiring or hold hope or protect or save or make things better. I’m here, in the mud, too injured to climb back on my horse. Here in the mud, knowing that my life is beautiful, my tribe is beautiful, that I’m vomiting pain in a life I’ve worked so hard for and built so painstakingly. I’m peirced through by a sense of failure and loss and my own woundedness. My baby died. My love is hurting. My business runs at a loss. The word ‘recovery’ is like a spear in my side. I want to be riding my horse. I’m just going to lie here and hurt.

I know some of you are in the mud too. Broken dreams and hurting hearts. A memory of strength and energy and courage. And it’s so desolate and desperate. I know I’m not the only one and I’m not alone. Whatever your life looks like on the outside, you can choke on pain. Something inside screaming out for help and nothing you do calms it. Working hard to do things that might help, to shore up the river banks and sand bank the doorways against the sense of self hate and defeat.

The day with my art prints stall was very long. I took some art supplies and started a new oil painting. It’s Tam’s peach tree in bloom.

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Preparing to sell my giclee prints

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This was my rehearsal set up today – Rose and I are preparing for a stall at the Pregnancy Loss Australia walkathon tomorrow, where for the very first time I will be offering fine art prints of my work for sale.

I am anxious and would far rather hide home in bed.

We’re both feeling a little raw, pleased to be involved, inspired, but also vulnerable. Holding each other in tears in the kitchen.

Together we are stronger. We’re both working hard to use humour and everything else we know to help stop the bad hours spiralling into awful days.
I actually slept peacefully last night, for the first time in a long time. I dreamed deep dreams the meaning of which was a gift: that what I have to give to the world has never been much in the way of financial support. It’s always been about kindness and helping people feel more alive. And that’s mostly what my household needs at the moment anyway, so let go of the other ideas and focus on that.

I can see the sky again, can breathe again, for moments. The anxiety is still a herd of wild horses running, but I can steer a little, suggest a little, and today that was enough. Today was a pretty good day.

Tomorrow, because Rose believes in me, I’m going to sit in a tent on some grass with my art, and hope that other people will be kind to me too. Wish me luck.

My first gilded prints

The sun is out, the garden is in bloom. Birds are singing and someone is running a bench saw nearby. My lovely lady is rearranging the baby clothes collection. We’ve got up early and arranged for scans and prints of a number of my artworks to display and possibly even sell at the Pregnancy Loss Australia Walkathon next Sunday.

I’m currently working on creating certificates of authenticity for my two beautiful framed, hand embellished giclee print reproductions. I’ve gilded both with 23 karat gold and they look incredibly lovely. This one is going to a new home this month. I’m planning to open an Etsy store and link it to this blog in a few weeks.

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And my love and I are trying to conceive. Adenomyosis is making things very hard for me and will only get worse the longer I’m off hormones – it’s been 9 months now. If circumstances were different we might wait a few months for things to settle here, but they are what they are and we have closing windows of opportunity, and big broken hearts full of love. August is done and left behind us and may September smile more sweetly on us.

Etching – Even the cats have graves

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I’ve been working on this in my print making class. The image is part of my series of works about miscarriage and grief. It’s linked to a poem, The Roar, I wrote about losing Tamlorn:
Even the cats have graves, even the little injured wild birds that die on the way to the vet.

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There’s been interest from a number of people I’ve reached out to about holding an exhibition of this series. There’s been a lot of things that haven’t gone my way lately, so this is particularly special to me. I’ll be glad to hold a space in the world, however briefly, where this isn’t a taboo.

Art and cages

Catch 22. My week goes on and I find myself captured and ensnared by ideas that make me bleed anxiety. Failure is everywhere and I’m driven before it like a horse into a blizzard, numb with ice and hot with panic. I’m bound and can no longer run, I cannot fly, or swim, or even breathe. My mind is not my own anymore, full of cages so small my soul is squeezed between wires, it makes the sound of a violin screaming.

I find sometimes that I can name the cage and thus reduce its power. It becomes transparent or rather, I transcend it by no longer believing in it. It does not work if I try to force it or fake it.

‘Work’ is the name of one cage that’s killing me. I stumble into college through drizzle, so desperately afraid I can barely breathe, so overwhelmed with despair it is an effort to put each foot in front of the other, and think to myself – to feel this way about a day spent making art – something is deeply wrong with the way I’m looking at the world. And I named the trap – work, and asked myself how it would feel if, that day I did not work at art but instead, dreamed things into existence. And some small bird in me took flight.

I sat in class sketching designs about death and the lights were painfully bright and the students laughed around me and my heart was so heavy with sorrow I felt like I had a broken egg in my chest and all the yolk was oozing inside me. How can they make art in the daylight? I ask myself. How can they think death is here, invoked here under these lights? They laugh and they work studiously or lazily, they talk of faraway places. I’m sketching a hill in which little cats are buried and a woman holding her dead tiny unformed baby and my heart is breaking. And I find the name of the next cage, and it is ‘Art’.

Another student is kind to me and she talks of her studio back home where art was a kind of spiritual practice, not a product made to be assessed or sold, and it’s the first time I’ve ever heard of anyone making art the way I do and I feel less alone. We talk about how hard it is to sell works that are so much a part of us, and tells me of feeling physical pain when an artwork of hers was cut. I think of phantom limb pain and hysterical pregnancies and all the ways we map things into our own mind and body as part of us.

She tells me that my work reminds of her of the work of the female surrealist artists and I’m surprised that I didn’t even know there were any female surrealist artists and then I’m sad I didn’t know that. I look a few up on my phone and discover one had psychotic episodes, like me.

After the class, I go into the sculpture studio just to be there and smell it. I chat a little with my favourite tutor and the words lay in my mouth like huge, fat river stones: ‘does my art count as art? Why??’ but I don’t ask them, I carry them home in the bus with me, accepting that doubt and grief are part of this.

That evening my friend comes over and we play games and something that’s been shut up tight all week finally blooms and the fear lifts like fog in the sunlight and I can breathe again. I realise that we’re wearing the wrong clothes to college, that those clothes that are suitable to get ink stains on we usually wear camping and those parts are heartsick in buildings and lost in the city, far from home and a world that makes sense. I don’t have many other clothes that we can risk ruining, but we’ll try different shoes and see if that helps. Or we’ll try face paints. I’m afraid but determined to walk my own path.

One of my tutors hates the stories about mad artists, the mythology of genius disgusts her – and for good reason, it’s so often false, cynically manipulated, obscuring sad or banal truths, or creating edifices of snobbery… Not that snobbery isn’t everywhere in Art. But for some of us there’s some truth to the madness and the not fitting, some of us do not make our art in the daylight or about daylight matters. Consciousness is linked in a way I do not yet understand and I won’t have that link broken and destroyed by their endless rationality.

I stood in a street last week, feeling deeply sad and music played and spoke to me, it called me and I came and found the sound of the crowd and the sound of the fountain wove through it to create a unique symphony, a piece of theatre that would never be recaptured. Most walked past or through but some like me were snared as if on hooks, tugged to a stop and drawn in. We sat or stood in a half moon around the musician and listened with ears tuned to another world. It was no longer day but another place, no longer ordinary, but a moment beyond. So few of us stopped. Like dogs with ears tuned to a pitch their humans cannot hear, we could not go on without acknowledging the music, while so many others could not hear it.

I do not know what it means, only that the world is a strange place and at college is a strange place and I do not wish to become someone who cannot hear the music or someone who makes art in the day.

My Artbook: Mourning the Unborn

I have completed the Artbook I created after my miscarriage earlier this year. Inviting you to send in things to be cremated with Tamlorn was a deeply moving experience for me. Afterwards, it felt to me like the most natural, connected, public artwork imaginable, for such a private and taboo experience. I wanted to capture some of the sense of ritual and connection for others to use as inspiration in mourning their own losses. I’ve been distressed to be part of support groups and hear how isolated and hurting so many people are.

So I wrote and painted this book, hand bound it using coptic stitching, covered it with silk, and illustrated and embroidered it with velvet, silk, and seed pearls. The binding alone took me 8 hours to hand sew. It’s very precious to myself and Rose. Here are a few images from the book:

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The peach silk cover, chosen because of the peach tree we planted to remember Tam by.

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First pages

 

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I’ve gilded the print on the right with gold leaf

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To the left are some of the names of other unborn children people sent to me. On the right, three seed pearls have been sewn to the watercolour vial to represent the glass vial of tears we sent with the box to the crematorium.

 

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On the right, a silk ribbon embroidered rose has been stitched into the book.

Now that we are trying to conceive again, the time feels right to share it. I am currently talking with local services about an exhibition of this book and my other art about pregnancy and grief to raise awareness and help start conversations. I am also reaching out to other communities such as those affected by partner violence to create exhibitions that speak to their experiences also. My next big task is to reproduce it in a colour photo book edition so that I can share it with you.

Update April 2016: I have now completed this project! View my beautiful photobook of this artbook in my Etsy store.

Happy Fourth Birthday, Blog!

Wow. On August 1st in 2011, I posted “What am I up to at the moment?” sharing my artworks She Blooms in oil and New Growth in ink and talking about my plans. Funnily enough I’ve just started making prints of She Blooms and I’m working on gilding one for sale… Funny how life goes!

Four years on, and 1,151 posts later, here we are. Wow.

I’m really proud of this blog. Like nearly everything I do in life, I started it without having a clue what I was getting myself into, and felt my way along learning and adjusting as I went. Intuitive and process driven. It’s been an amazing experience! I now consider it a massive ongoing work of public art.

I’m often asked if it helps me to write a blog, or costs me to be so public. The answer is yes.

There’s a cost to it, like everything we choose to do in life. I’ve found myself feeling exposed, stretched, confronted, intruded upon, misunderstood, mocked, and way out of my depths at times. I’ve doubted myself and my work, accused myself of narcissism, hated my impulse to expose my vulnerability even when people are telling me to be more professional and only show my polished side. I’ve wrestled with the uncertainly of process driven art – feeling completely at sea at times – what am I doing and why?? I’ve had the occasional nasty comment, confronting discovery, challenging cross over of being out into a space I wasn’t out yet, and so on.

But I’ve also had some amazing experiences. I’ve made a lot of friends, many of whom write blogs I follow too. (I’ve just added a blogs I follow widget which will show up on a pc!) I’ve had people write to tell me something I wrote saved their life, or saved a relationship, or helped them handle something really hard or feel less suicidal, which makes me cry (every time).

I’ve had people I don’t know come up to me in public or at face painting gigs and tell me how much they love this blog, which is surreal but wonderful. A couple of years ago the lovely Amanda came up to me at Feast and said you don’t know me, but I love your blog, and took a photo of herself with me. I wish I had a copy of that photo. We became friends. When she killed herself a year later I was heartbroken. I’m so damn glad I got to meet her, she was amazing.

I’ve had people reach out across the cyberspace and be with me, in some of the hardest and darkest times. People sending me back the same message I send out – I’m here. You’re not alone. You’re not the only one. You’re okay.

I’ve had people send me money. Recently someone has contacted me to let me know they value my work and are funding me monthly for the next 9 months. I went to bed and cried hysterically for a couple of hours, Rose rubbing my back. I ran out of money for fuel at a mental health conference out rural and asked for help and people rallied around me and I was breathless and wordless with gratitude. People are helping me with marketing, mental health research, higher education options, information and emotional support. I give and my tribe gives back to me.

Since writing this blog, a tribe has formed around me. Not some homogeneous unit, but a huge, varied, organically grown network of people in diverse overlapping communities, affiliations, passions, identities. They range from the closest of friends to someone who sent me a tweet sometime, or answered my question as a friend of a friend on Facebook. They connect with me, teach me, support me, need me, love me, learn from me, argue with me, and witness my life. I have come from a place of bitter isolation and loss, running from a world that was killing me and burning all the bridges behind me. I’ve endured and everything is different now. This blog has been an essential part of that.

So yes, I benefit from blogging. I used this blog to out myself, in stages as I felt able to. About having a mental illness, about being multiple, being bisexual, being genderqueer, being psychotic, being pregnant and our baby dying in my womb. About being ‘high functioning’ but still having bad days. About having physical illnesses, gynaecological disorders, invisible disabilities. Being out and public helps my mental health. It connects me to communities, it helps people understand me better and treat me better. It helps me find people like me.

I use this blog as a place to reflect. I use it as a place to be relentlessly human. I use it as a place to help other people feel less intimidated by the polished versions of self we present to each other in our lives, the imitations of intimacy and chronic dishonesty that characterise so many of our interactions with other people – online and in real life, with the burden of constant ‘professionalism’ and chronically degrading ideas about what it is to grow up and be an adult, with the misery of loneliness in crowded places, feeling broken and unseen and unknown, like the only one of your species. I write here because I need these things too, because they kill me too, and in creating spaces that are more authentic and connected, I thrive too. In making the private public, with care and sensitivity and attention to how and why, I am able to see and be seen, to see myself, to be present woth less anxious disguise and less unthinking obedience to cultures of taboo that keep the complacent comfortable and silence the different and the suffering among us.

Happy Fourth Birthday, Holding my childhood to ransom. You’ve been special. I love you. Thankyou too, all those of you who read here, even if we never cross paths or talk. Hope it’s been good for you too.

Grounding in the garden

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I woke up feeling sick and fragile but less swamped by anxiety than I have been. So I took the morning very gently and focused on grounding. I cleaned the bedroom, then the kitchen. Made breakfast, which I ate in the garden. Then gathered a pail of weeds.

I re read some of my own blog posts about crisis mode and recognised the past week in them, my sagging efforts to haul myself out of the deepening pit of misery, dissociation, anxiety, loss of a sense of competence or agency or hope. I stepped back from the crisis and felt the pressure ease. I tuned back in to myself and did admin tasks I most felt like doing and even found pleasure in them. Stepped out of roles and made time to personally connect. Felt like I could breathe.

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College was tough. I feel physically very ill, going hot and cold, getting moments of my heart racing. My face hurts, I think I have a sinus infection settling in. It took me forever to find a close park I could afford that would last the full duration of my class. I arrive late and flattered, only to find we were walking to the art gallery that week.

So I had to find and move my car closer to the gallery because I would not be able to walk all the way back to it in time. This took forever and cost me $11 in parking for one down the road from the gallery. I felt so sick it was hard to stay upright and I don’t think I took much in. I also felt that familiar sense of being heartsick that being around a lot of money and expensive things always gives me. I thought about how much I love art and my very favourite works by my favourite artists and I thought about whether I would save that work for the cost of a meal for a person and I knew I wouldn’t. I might go without for a couple of days, but I simply couldn’t starve someone else to hold onto it. I am often so uncomfortable in galleries. Maybe it’s not the art, so much as capitalism that’s stressing me.

Home again and much more content. My day has gradually improved. Rose is starting to feel better with strong antibiotics on board and we’re both excited to be trying to get pregnant again. We feel close and connected. Our little home is full of light and books and critters and people we love. It’s very lovely.

Everything is New

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My beautiful, kind, lovely sister broke up with her partner this week and urgently needed somewhere to stay. Rose and I have welcomed her with us. My family rallied and gathered to pack and move her and we now have three people, four cats, and a dog living in our 2 bedroom semi detached unit! It’s a little cramped but it’s also rather wonderful to have the chance to live together again. We all get along well and Rose and I have put a lot of time into our family culture, it’s healthy and strong and flexible, and probably just what my sister needs to recuperate.

Yesterday we overhauled the sheds, dug out our washing machine, and shifted a lot of my art supplies into drawers in the new shed. We’ve also been doing lots of caring and calming things to settle the nerves, the raw emotional pain of a breakup, and the bad memories that get unsettled. Camp-fires, games nights, online gaming, good home cooked food, music. It’s been beautiful to see in action.

Rose and I were talking about the sudden change in our circumstances and laughing that if we couldn’t deal with suddenly being a three person household we had no business trying to get pregnant, and that if we couldn’t handle sudden plan changes gracefully we were never going to cope with teenagers! 😉

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One of our new residents: this is my sister’s lovely cat. She is so sweet and relaxed and right at home already. Zoe is desperately excited, Tonks is chilled out, Bebe is sulking a bit, and Sarsaparilla hasn’t come far enough into the house to have met her yet. He loves sleeping in the lounge room by the heater in this weather. (it’s freezing in Adelaide)

Her name is Kaylee with an Irish spelling I wouldn’t attempt unless I had it written down! She’s adorable.

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We’re a family! We’re trying to get pregnant again the end of this month! And my business is blossoming! I have my first ever art prints back from the printer and they are so beautiful I cried! I have a buyer for one of my favourite paintings. I have mental health talks booking in. I have safe communities to nestle into – I’ve been getting to know the wonderful people in Community Health Onkaparinga, and I’ve just joined a trans and gender queer social activism group which was… Well it was like being in Bridges, the face to face group for people with dissociation and multiplicity I ran for a couple of years. It was magic, like being home, like being among my own kind, diverse as they are. I felt my heart open up and knew these are the places I need to be. This is where I put my energy.

College starts again today – a class on Installation Art that I’m so excited about I can hardly think straight!

I have overhauled my online home too, not as a finished product but to try and better reflect where I’m at and where things are going… Go and explore the menu, I’ve added new pages and rewritten old ones and nested a lot of my paid work information on this site with great care and caution and I’ll see how it goes. Tell me what you think?

I’m so bursting with excitement I got hardly any sleep last night. I feel like stars are burning so brightly in my chest that there’s almost no room for my heart. Someone wants to cry out with joy, loud! To weep with it. To pour it out of us like a river. My life is unbearably beautiful and I’m drunk on hope.

And someone else wants to be still. To sit and watch the bees in the basil. To sit under the cold winter sun and feel the wind on our skin. There’s children playing up the street, and the wind chimes outside our window singing softly. The breeze tugs a lace curtain into a kind of dance, puffs it up as if it’s a gown over a body so translucent I cannot see her, fae and trembling she stands by my window and drinks the breeze, and dances.

I love my sister very dearly and it’s hurt my heart to watch her struggle in a home where she was not well loved. I feel a fierce, deep joy to have her home, for a little while, to hold her close and cook for her and try to help her taste and feel again – this is what being loved feels like. So she can be nourished, so she has the sense of it alive in her, guiding her. It shouldn’t take such courage or cost such pain to pull back from places where we are not loved well. She, none of us, should have to be that strong. We should be well loved by those around us so the dance we must do around each others broken places is a movement from light to light, from home to home, from warmth to warmth, never fleeing into the night and the darkness, never broken by the cost. Always free. She’ll fly on again but we have a precious time where we’ll make our home together, where I can share the home I’ve been blessed with.

I’m not the only one sharing. I have been overwhelmed with donations the last month, often little amounts that I KNOW are costly to give, are, percentage of your income wise, very big indeed. I am buying resources for the networks, and paying for prints, and husbanding every dollar with care. A Blog reader contacted me recently to offer a regular gift of money over the next nine months. I took to bed and wept, Rose holding me gently. How overwhelming it is to receive such support, to feel such… Connection… Gratitude… Such belief in what I’m doing. You share my dreams! And like my art! And read my blog… And help with my networks.

I had a dream, back when I started this. To be useful in the world, and to express myself creatively. I have come through so much and learned so much in the pursuit of that dream. And Rose changed everything! Suddenly I’m dreaming of family and a baby too, my own tiny community within my much larger community. So I started dreaming a new dream, of being useful in the world, and expressing myself creatively, in an ethical and sustainable way. Transitioning my business and networks from a charity model to one of mutuality. I give and I receive, and together, we thrive, we dream, we bring more kindness and honesty and hope into the world.

Professionally wild

I’ve taken a key step in my life as an artist – I’ve found a local printer, Black and White Photographics who were happy to walk an anxious and print illiterate artist through the process of converting original works to quality prints. This is a project I have been wanting to get off the ground for a long time, but struggling to find resources and information. I visited many different local printers and none of them knew anything about art prints or could refer me. The urgency was rather increased as someone wants to buy one of my oil paintings and I can’t let go of the original unless I have a high quality digital image of it, and I also want to put it into a better frame. A friend referred me to these folks over Facebook, and Rose took me to see them yesterday morning. I asked a lot of questions and was given a lot of information I hadn’t known about how it all works and how to deal with the reproduction side of selling art.

Then we got back into the van and I cried. It’s exciting but overwhelming! Even leaving my originals with the printer was stressful and strange. It’s so different from poetry and writing… with those, I can win an award or publish a work and I still have it! Usually I still even have the original handwritten version in my journals. But with art – you let it go. And my work is… well, it’s kind of pieces of my heart. Parts of my life story. They are incredibly precious to me. I’ve saved my art collection from several bouts of homelessness and other major crises, even from my own impulse to destroy them (most common when I’m feeling chronically suicidal). Holding onto them has been a kind of expression of… value. To me. That I think what I do has value. Even if I’m the only one. That we promise we won’t destroy each other’s work, even if we hate it or it scares us and we have to hide it from view. Creation has been part of our “those who don’t build must burn” approach to life, something integral that helps to keep us alive, keep our heart alive, document our story.

Other people’s reaction to my work is a whole different ball game. Selling it, different again! The printer told me my work was under priced and estimated a retail price at about double what I was asking. This is the work I was told several times was over priced and would sell easily if I would just drop it down. I stubbornly held onto it. I knew what it was worth to me, I caculated i’s value to me in paint – what would I be willing to bear parting with it for? Better paints, and enough for another few works… I’ve only let go of three original works (apart from those I’ve given as gifts, before I pulled my focus in tighter – more art, less craft, more personal, less generic) and in all cases I don’t have a copy or a quality photograph and it hurts. I stopped selling them and only made an exception for my best friend, knowing I’d be able to ask for it back to get a print done once I figured out how and where I could do that.  In my last solo exhibition 2 years ago, I was told the works would not be offered for sale, which suited me… On the opening night, three different people were keen to buy the same ink painting. I took their details and promised to get back to them and never did. How could I? I knew every detail of that painting, where I was when she was born in my mind, what dreams I was having, what was going on in my life, where I sat to paint her, how I mixed the inks, chose the paper. She’s part of me. So I’ve slid quietly away from every offer since. I put up works of ‘backup work’ not finals, for sale in another group exhibit for people with a disability, priced them modestly, sold a couple, and again was told – I’m pricing too high. People would buy much more if they didn’t have to pay $40 for an original. Again I resisted the devaluing, calculated their worth to me in a kind of trade – I want another bottle of ink ($30, with postage), I want to buy a better quality brush ($60), and I’d part with the Blue Rose for a brush I guess, and that dog for a bottle of ink, but not less.

A number of people have contacted me over the last week about buying prints of their favourite work once I’ve arranged that. A few want the originals once I’m ready to part with them. I have two art exhibitions in the works I need to find a gallery or exhibit space for. (and time to arrange!) Rose is helping take on some of this side of things for/with me because I’m out of time and out of my depth. I need to get hold of a website designer to help me set up a beautiful online gallery. Rose has believed I would have a professional art career since she first met me. I’m just able to see it now, as I’m learning about the incredible diversity of arts practice, as I’m finding words like Community Artist and Hybrid Artist that fit what I’m feeling my way into… as always for me – I do things, moved by instinct and guided by values. After I’ve done them, I stop and reflect – what was that? What am I doing? What does it mean? And I have to find something to reflect upon, a language to think about it. Sometimes that takes many years!

So yesterday, I sat in the van, crying, and so exhilarated I could hardly think straight. We went on a trip to Victor Harbour through the mad stormy weather. (Rose drove) I was so crazy silly in the petrol shop the cashier burst out laughing and thanked me for brightening her day. When it hailed on us I was so flooded with joy, the sheer childlike pleasure I was laughing and crying out and felt like my heart would explode. My paints are calling to me and the night is calling to me and the storm is calling to me and my beach is calling to me.

We had a great day and I didn’t explode. We spent it with friends, playing games, eating good food, talking about our lives and families and the futures. Talking about Tamlorn and donors and how sad this path can be, how hard it can be. All day I tugged on people’s shirts in quiet moments to say, in bewildered joy – ‘someone wants to buy my art’!

Driving home late that night, through the squalls and gusts of wind and I’m impossible. I feel like a great, wild creature in me that has been chained has suddenly been freed, and it’s gambolling in bursts in every direction and snapping teeth at everything, it’s feet, the stars, the wind, so fiercely joyful and unbounded and un-contained it’s impossible to be anywhere near… and Rose and I talk about our split desires, how deeply she loves home at the moment, sinking roots into a stable home, planting trees. And I talk about how free I felt in the van, how alive I feel when I sleep somewhere I can feel the night and hear the rain. I am sad and torn and full of wild dreams. I dream up a mad studio for my back yard – a four poster bed, covered in canvas to keep off the rain, with an easel that swings over it for painting or poetry writing and a covered candle lantern for light the wind can’t blow into a bed fire, and netting to keep away the bugs… I can see myself in it some nights, out the back under the moon, the bed like a boat on the night sea, my speckled dog with me, and the wildness in me runs free and howls through my veins, such splendid joy. All the wild things in me turn their faces to the stars and howl, a cacophony of sound, a deep solidarity, a yearning and a coming home. No more the shadows. No more the whip and the bridle. Unchanged and unbroken. Free to be as they are.

I cannot contain such joy. I cannot bear it or hold it in. I am swept along by it, by the intense self awareness – “all things pray by being themselves” – my life no longer devoted to the breaking in of my wilds, to the conforming of my madness. My day people are finally the stewards of my night people, finally unpicking the locks and letting the whips lie still. Even just for a night. I am so alive. We are so alive it is unbearable. I cannot know it, and be unchanged. Everything sings to me. The night calls me home.

Great projects & info

So much is happening at the moment!

Freebie:

  • I wanted to attend the GROW SA fundraiser later this month but I’m now booked on that night – Sat Aug 8th. They are inviting people to join them for a night at the Capri Theatre to see “Last Cab to Darwin”. I’m happy to pay for a ticket and if you’re short of cash and want a night out, you’re welcome to attend in my name. 🙂 First in, best dressed. Send me an email sarah@di.org
    All details on their Facebook event page.

Looking for Information:

I’m hoping to learn more about these topics – if you have some experience or knowledge, please get in touch and share it with me 🙂

  • Patreon as a funding model for someone like me – blogger, artist etc – upsides, potential pitfalls and so on
  • Social entrepreneurs and responsible business design/development/growth/resources
  • Voluntary Simplicity
  • Circles of Support

My Projects:

  • I’m developing a Charter of Rights which would apply equally to all in one of my networks, the Dissociative Initiative. I’ve started a small fb group for those who are interested in developing it to completion – so if you’re interested in giving feedback, working on wording the phrases, or looking for other Rights type documents eg human rights, child rights etc and linking them in so we can learn from them. Potentially this will lead to a charter for all my networks and resources – please join up! This will be a short term task force, once we’ve finished putting the charter together we’ll disband. You can also leave at any time.
    Charter of Rights
    Facebook Project Group
  • I’m also exploring models of formal support for people who are isolated or having a rough time. Again this is being done with the Dissociative Initiative so our first trials would probably be with people who experience multiplicity but the model we develop should hopefully be useful more broadly too. This will be a short term task force, once we’ve finished putting the charter together we’ll disband. You can also leave at any time.  Our facebook group is:
    Connections
  • I have also created a new Network – there’s been a call lately for a central database of resources around managing medications. I’ve linked information together to create Orange Bottles
    orangebottles.wordpress.com Please check it out, share it, and send any feedback or resources to add to me here, through my personal Facebook page (I’m happy to friend anyone), or via email sarah@di.org.au
  • The Homeless Care SA network is in the early stages of growth with people sharing links and ideas from elsewhere about what might be useful locally for people who are homeless or at risk of homelessness. If you’re interested or already involved in this field, please join up!
    Homeless Care SA website
    Homeless Care SA facebook group

Other Projects or Info:

  • Story City is coming to South Australia! Seeking Writers, Illustrators, Digital Artists, Musicians and Composers to bring an exciting new digital platform to Adelaide.
    http://www.storycity.com.au/story-city-adelaide-eoi/

  • Working with queer young people workshop
    “Queer young people often face unique relational and social challenges, with traditional understandings of gender, sexuality and identity often having marginalising effects on their lives and relationships. This workshop will examine professional and cultural discourses that influence our ideas about gender, sexuality and identity, and by linking conceptual resources with dialogical practice, Julie will help you put queer theory into therapeutic action.” Enquiries to Winny on (08) 8202 5272, or email: WinnyM@unitingcommunities.org
    This workshop is being held and co-hosted by Uniting Communities

Posted by Dulwich Centre Foundation on Wednesday, July 1, 2015

Wrist poem – This is not my hand

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The texts read:

This is not my hand.
Hamlet knows it not. Hamlet denies it.

You’re a hopeless romantic, Faber said.
It would be funny were it not serious.

You’re intuitively right, and that’s what counts.
Denham’s dentrifice… Consider the lilies, they toil not, neither do they spin.

Art at a mental health conference

The conference is over, and I’ve done what I came to do. And we did it!

Calmer on the second day, more prepared, more sleep, all the incredible goodwill of my tribe behind me… I was having hysterics on Facebook, so distressed, and also had to be bold enough to ask for money as the fuel costs were higher than I thought they would be and I didn’t have enough money to get home, also unless I paid my phone bill my mobile was going to get cut off within a few days. People responded to my cry for help with messages of support and encouragement and a bunch of deposits pending into my account.

I cried with gratitude. We chose our clothes carefully: the silver velvet dress, not corporate culture, not trying to blend in. But also feminine and non threatening. And not the slip on shoes but the boots, because we are far from home and need to be strong. The dress belongs to one of us, the boots to another. They are a powerful combination, one gentle and thoughtful and the other strong and grounded. Thus, we went to the second day of the conference.

This conference had an artist in residence, who was painting at one end of the foyer, next a table with crafts for a collage mandala set up. We quickly made friends and this was my home for the second day. It had everything I needed, close to a charger for my phone, toilets, drinks, and next to a door where the main talks were happening.

The speakers voices were broadcast into the foyer, so we could hear them clearly, and if I sat in a particular seat I could also see them or their PowerPoint through the little window in the door. Perfect. I sat in two sessions directly at the start of the day and very much loved both of them, but once I found that seat I was much more comfortable. The protocols around listening are hard on me, I often need to fidget, split stream (one of us might be writing a blog post while another one listens), get up and move about – fibro pain has been very bad this trip dur to the cold weather and so much sitting, or in the case of a speaker who is distressing me, leave. All that is horribly rude and distracting for a speaker and in most cases they’d assume I’m bored which is far from the case usually considering the effort in making to be there.

Out in the foyer I could do all of those things as I needed and they were none the wiser. In many cases too, speakers who were already confident voice projectors were being given microphones linked to speakers at high volume, I was literally being shouted at and found it unbearable. Out on the fringes I took what I could and stayed out of the middle where the fire burned too bright and too hot.

Funny for someone who’s usually in the middle doing the talking. I’m reconsidering everything I do and all the ways I do it.

My goal was to be present, to remain calm enough to be able to see the rest of the people as human. At first I struggled. The first speakers were both incredible and I related a lot to them both, in the sense of their wildness – they were not the obedient and conforming ‘recovered’ peer workers in used to seeing at these events but people with raw, rich, complex stories to tell and a fierce, gentle kind of pride. Hearing people speak my truths from the stage calmed the anguish in me. I didn’t need to find a voice in this space anymore. Once again I was struck by the folly of my own ego, my sense of urgency that I must speak the burning truths I know! Other people know these truths too, and are speaking them. I am not a lone saviour, but part of a rich, complex community, and not an essential part at that. I let go.

Over the day, I sat at the art table and people came and went as they wished. At first, I hated the mandalas, they seemed so tame and empty. Art for people who don’t understand art! And all the usual conversations awed, and disconnected “I could never do that, I’m not an artist, I can’t draw”, the same distancing and stereotyping I’m used to and hate…

But each person who came by said something that resonated. One came through and mentioned how they had torn the little coloured papers, instead of cutting, so they would have more interesting shapes. Another proudly showed me how they had glued the feathers into the work, to give it texture. One came back pleased to find that a colourful pattern they’d started – to disrupt the existing block colours, had been continued by other hands. One sat and talked a while and created complex zentangle type patterns within the shapes. One mentioned to me how someone had told them they must not go outside of the lines, and how they’d obeyed them and then later felt annoyed with themselves for not pushing back – but they were happy to return and find that someone had taken the mandala outside of the lines for them.

I started the day with my own stupid, quiet sneering that these people were so domesticated they could not even colour outside the lines and merely continued the patterns left for them by others. By the end of the day, I felt so much compassion for the complex choices they faced every day, working in dehumanising systems and being forced to obey, conform, adapt, over and over again, a thousand tiny cuts, tiny insults to dignity, tiny losses of their humanity. And yet. Every single one of them found a way to contribute something meaningful to them, within the constrains of the pattern. Pushing the limits but not destroying the whole. Working collaboratively. Each showed me their work, sometimes almost conspiratorially, or with sadness – “They never let us have any colour. Not in our clothes, our buildings, our paperwork.” There was a sense of deep loss, the subtle wordless grief of a people who have been quietly bled to the point of numbness.

But they were here. Showing up. Being present, like I was. Still, despite their numbness, determined to be part of change, to bring good into the world. It was honourable and piteable and so terribly human in its own bitter-sweet way. I saw them, and they saw me. I had amazing moments of connection, over and over again. A new friend sat by me and told me “they are all so afraid. Their body language is anxious. Even the important speakers as unsure what to do, who to talk to.” I was astonished. I saw only the armour of professional competence. I sat with her and shared her eyes and began to notice what she saw. The little tells of stress and fatigue. I’m outside that culture. That means I see some things more clearly, but others I miss. My friend works in that culture. To her it was obvious. I saw and I felt compassion and kindredness.

Everything everyone said to me had a profound ring to it. It was like I was hearing people for the first time, really hearing. Everything they said and did, spoke to me, and rang with deep wisdom. I felt like cataracts had dropped from my eyes and the world was shining so brightly it was almost too much to bear. People were connecting with me, sharing with me, and offering me help, and asking for support, in little, quiet conversations that I was glad to be part of, all day. This was more my language, my style.

At the very end, after most of the people left, there was a world Cafe, kind of speed dating with ideas. Arana was curious and snuck over to join in partway through and invited me gently in his subtle way. Helen Glover was pouring out the last of her energy into it, trying to make something happen, trying to make something new and enduring. She burned almost too brightly to look at, but she put down her microphone so I could bear to come to the edges and look.

I shared what I do – networks, community, service design, policy. I offered to host their new network, help them find an online home and nest their ideas. They were deeply interested and uncertain about such a different structure to the ones they work in, asking intelligent questions and spinning off my ideas into rich and detailed ideas of their own. This is what a community is. I spoke and then I was silent. Arana sat next to me and made little jokes and fed me jelly beans. I ate the black ones. I trembled with exhaustion but I was there. We all formed a plan and made a time to speak again. And then we broke apart and left.

Some of us went to dinner together and I invited myself. People were tremendously kind, they gave me money for fuel, paid for my meal, bought me supplies. They are part of my tribe now too. We see other. I was able in the quiet spaces over our shared food, to ask a few questions and I gleaned some important information.

Actually I learned a lot about the speaking role from many of the speakers – Heath Black, who was amazing and insightful, gave me a gem – that he copes with the stress of the speaking by having someone available 24/7 for phone debriefing, and that he rarely speaks to hostile audiences anymore because it’s too hard to recover from. He also gave me a copy of his book for my library.

Nicole, who is behind http:// rogueandrouge.org.au , and who spoke eloquently of love and friendship as essential responses to suffering, alienation, and abuse – she tells me, kindly, how she turns off her energy when she isn’t in the right place to be present and connect. I watch her wake and dissociate through the evening, the moment its too loud she is gone, present in body only. And it’s such an elegant use of dissociation, so nuanced and practiced and clearly valuable that I feel like a child who has been thrilled with finger painting, stumbling into an art gallery of masters. We know so very, very little in mental health, really.

If we want better answers, we must learn to ask better questions. And if we want new answers, we must learn to ask them in different languages, invite new voices.

At midnight the last connection was broken, for a time, the last exchange, the final parting in the parking lot. And I decided to leave the city and find a quiet place.

The hotel were superb, they clearly could teach us something about organisational culture, every person I spoke to was professional but personal, kind and friendly. They let me sit in the foyer to recharge my phone, and the woman at the bar made me a take away hot chocolate and filled both my hot water bottles.

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I drove out to the nearby conservation park and found a spot near the water, it’s stunningly beautiful. As soon as I leave the city lights behind me I feel something unknot within me and I know I’ve made the right call. I curl up in bed utterly content and go to sleep.

Two hours later I wake, at the conference one of the people had asked me to please write my ideas about mental health system reform. Apparently I was listening, because I wake with a book in my brain. This is getting tiresome! I don’t have hours in my day to write everything, think everything, feel everything. Life is almost overwhelmingly alive for me, even in the quiet moments I’m rocked by profound epiphanies and even in the times I’m getting away from it all, my mind is overflowing with inspiration and my heart with deep feelings.

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I write about 20 pages of policy development and try to go back to sleep but it’s too cold. Even after I put on all my warm clothes, it’s too cold to sleep. I rest anyway, hopeful I might drift off. At dawn I cast a glance beneath my curtain and literally catch my breath. The sky is on fire. Out the other window, the bay is covered in a thick mist. As I watch, a dolphin swims past, regal and relaxed, very close.

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I set up my chair by the edge of the water, wrap myself in a blanket and watch. The dolphin is swimming with a young calf. I think of my beloved Rose at home, and how hard this trip has been on her, how much she believes in what I’m doing and the sacrifices she makes behind the scenes, and I weep with joy. She is a mother, and she is here with me.

My tribe is here with me, and my new tribe is here also. It’s been imperfect and exhausting and bewildering and painful. But it’s also been exactly what I hoped and more, the meeting of tribes, the sharing of knowledge, new skills in the art of being human.

Back home Rose is being loved too, and in so grateful I cry again. We’re not alone.

I think of the rest of the delegates asleep in the hotel and, beautiful as it was, I feel sorry for them. I wonder what a conference would be like if we sat here at the end of it, together, around a fire, watching the dolphins. Life is beautiful and I’m exactly where I need to be.

Learning through love and pain

I got some sleep! Thank the gods of small items that get caught in drawers.

And everyone who was kind to me yesterday. I am so grateful, and learning so much – or rather, relearning things we knew but have almost forgotten. How kindness can clothe us when we are naked.

The place I was in yesterday – triggered to the edge of hysteria, raw in the presence of people who were not raw. I used to live there! I remember.

Coming out of it for me yesterday was the intellectual grounding of my people, saying to me in many subtle and overt ways, that it’s okay that I’m different, okay that I’m human, okay that I’m raw, okay that I’m triggered. Over and over again. The balm of acceptance, like oil poured into the painfully self aware distress of my public hysteria. I am learning so much, less from the conference then from all of you.

What happened when I was raw to that place of screaming? I couldn’t see them as people anymore. They couldn’t see me. I would smile at strangers and their eyes would bounce right past me. Embedded in a culture dominated by the ideas of the somebodies and nobodies, I was a nobody far too heartsick to fight to be a somebody, too sickened by the fight and the process, by the shouting at each other from podiums.

I don’t even feel alive when I sleep indoors every night in my own tiny, beautiful, personal home. Out in my van under the stars I’m far from the gradual dissociating provess of a life seeking comfort. Here in this hotel, temperature controlled to a warmth that makes me eyes feel hot and my lips in the mirror this morning seems dry and slightly swollen, a soft bee stung swelling and a shade of pale skin as if I’ve been sucking out poison from a wound and a little is left in my face. Here I’m far from home.

In an online forum I’m part of, a different group of people are talking about the ways peer work is most effective – and it’s excellent and well thought through and observational and drawn on years of experience. One of their points is that it needs to be processed rather than raw. I speak to that – that my experiences have often been raw rather than processed and that’s the tip of a complex conversation I don’t have time for in this rush rush rushing, that my stuff is often much more processed then others simply because our group mind works that way, and yes, that too raw can be too vulnerable, too full of rage or too under the thumb – telling the stories of the dominant culture back to the dominant culture in a self gratifying process (that those of us outside it often call with pity or frustration or a sense of shame that these are the people representing us -) “tame peer workers”…

I know, I see the problems with that. But I also see the value in this raw process. Something can be lost in the processing. If we don’t start with raw, dense, rich with complex detail, unprocessed as much as possible, honest stories, we lose so much. Maybe that’s why I’m an artist. Truth telling us important to me and my work, and in mental health it’s something I have to fight for because they prefer “tame artists” too.

I get the need for a relationship and not a screaming argument. I get the need for processing to make our stories bearable to hear and to tell. I understand that we need to speak in the language of the people we are trying to speak to, if we want to be heard. But… But…

I’m not talking to astrophysicists. How can you be telling me that mental health workers cannot hear me when I am speaking in the language of raw, unprocessed pain and truth? How can you be telling me that they cannot bear the intensity of honest and deeply wounded humans? I hear you and I believe you and you are only putting in words what I have already seen and felt but…

This is the problem!

It’s not just something to notice and work around, it’s the heart of everything that is wrong. If I can’t speak in the language of unprocessed pain and have a mental health worker hear me and understand me and be able to bear that language and rawness, what the hell are they doing in the field of mental health?

So my tribe, you are keeping me sane. You are holding me while I scream and dig the traps and lethal ideas out of my head, and then hold me while I bleed and sob and reassure me that, this too, is human and okay. It’s how people look when we are far from home. There’s nothing wrong with me. I am an ex-cult member back in the cult, trying to hold a space for my new tribe. Trying very badly, messily, crumbling. Not well able to use the ways this culture gives respect or signals importance or the things they require for a basic sense of dignity and inclusion. I’m not very good at it.

I’m sitting here, in the front row of a session at the moment, wearing a silver velvet dress and my strong boots. Trying to find a way to not be like them but be accepted by then, to tolerate the pain in me of being among them but not become so overwhelmed with pain that I can’t see them as human anymore either – that I give up on them and all their world, leave it to the pain soaked stereotypes of emptiness, not hear anymore each individual voice with all its richness and brilliance and loss but hear only the roar of the whole culture, see only the ways that they harm and none of the ways they heal, find no value in them but run home and say with agony and bewilderment and rage “they are not human, like us”. I think of the indigenous people seeing the first white people, seeing ghosts in the mists. It’s just as difficult for me to see them as human as it is for them to see me as human.

So, I sit at a mental health conference and think of all we have learned. The knowledge I am so passionate about, the neuro psychs, the brain biologists, the people learning how to help stroke victims heal, the social scientists unpicking power and the subtleties of abuse in our most intimate and most impersonal relationships. It’s all so important and so valuable. Every thing we know about the world and ourselves is so valuable, there’s not a single tiny piece of information we don’t need. Every bit of it is essential and relates to a complex whole.

But right back down at the coal face of one human to another, of how do we connect with people in pain, how do we hear when people speak with the language of agony and broken hearted rage, how do we be human with one another, see and be seen… All the wisdom of our brilliant, disconnected, scientific culture is totally useless if we don’t know how to love each other.

So, thanks for standing with me. I’m learning a great deal. You make this possible, you learn with me, I learn with you and from you. Language connects us, culture connects us. You help me bridge the gaps, help me stay human. I hope I do the same for you.

Nameste, gratitude, blessings, prayers, and love.

Stand with me, please

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Well, I’m here at the conference. Well… In the vicinity of the conference anyway. I’m in the lobby trying to coax breakfast down me. It’s a very nice breakfast, but I feel particularly ill.

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Cold water and porridge with stewed apples. Good slow burning carbs and not too rich. I’m doing my best to pay close attention to what my body needs on this trip. I’ve put myself under considerable physical pressure – very long drives, long hours of sitting, cold weather, and often missed meals, and very little sleep. That last one is a killer. Sleep deprivation and fibro do to me what an all weekend bender does to a 60 year old.

My hotel room was beautiful but I’ve only had a couple hours of sleep again – cold weather, many many hours of sitting, and then sudden flurries of rushing around are pretty much a recipe for disaster with fibromyalgia. By 2am the pain my knees and ankle was severe. I wound up spending a lot of the night in hot showers and doing stretches trying to open up the joints again.

This morning I feel badly hungover, with nausea, slight tremors, body aches, that cold sweat, especially on my face and lip, a bad headache, and really heavy head. The only hangover symptoms I don’t get are the thick saliva and fuzzy mouth because there’s no dehydration component to fibro. (unless I’ve also forgotten to drink, obviously)

So I’m moving very slowly. I’ve taken a couple of ibuprofen which is as strong as my pain relief can get due to my drug allergies, I’m sipping cool water and gently spooning mouthfuls of porridge into me as I feel I can keep it down. I’m resting but also walking around and slowly pacing when I can to ease the body pain. Massaging the trigger points above my eyes gently.

Pink Floyd comes on the radio “did you exchange a walk on part in the war, for a lead role in a cage?”. And then Neil Finn. Familiar music, my music. Something knotted eases a little inside me. So much of this weekend is about being in a different culture, the minority stress of being queer, multiple, alternative, a stranger, a long way from home. People are being kind, which helps. One new friend is indigenous and she gets it instinctively: like her  I’m a long way from home. I have no idea what is like to be her but we’re united by own experiences of constantly being the minority representative in a dominant culture that doesn’t understand, or particularly value a lot of what we do. The pervasive indefinable heart ache that comes with speaking in a different language too much, too long, being the alien. It’s a big Gap. I’m grateful and deeply moved by such acceptance – as Brene Brown puts it in her book, not fitting in but belonging. Different but accepted. There’s been a lot of love around this training, and I’m grateful I’ve been doing all that work on accepting and connecting because I’ve been able to hug and connect and let people be kind – to be genuinely reciprocal, which is beautiful.

Mentally I feel mazed. It’s hard to focus my eyes and I can’t take in what’s going on around me very well. I’m thankful I know so much about fibro and dissociation these days. I know what’s happening and I know what I need to do. How many years it’s taken me to be able to do this! And it’s still hard, days like today. And – all my friends with a disability will get this – there’s a slight reluctance to tell anyone how rough I am in case they think I can’t handle conferences and don’t invite me again, or try to exclude me and caretake in intrusive ways. So I’m doing what always do when I feel that pressure to keep quiet – I’m here, telling the world. You guys, and this platform, keep me sane. Keep me free from the lead role in the cage. Thankyou.

I’ve set up some artwork, our ‘healthy multiplicity’ poster for the DI, postcards for the DI and HVNSA, and a grounding kit for the conference attendees to try out. I’m here representing my tribe; artists, people with lived experience, peer workers, people who have been through trauma, freelancers, people who are poor, queer people, people with a disability, social entrepreneurs, multiples, counter culture people… I hope I’m doing right by each of these communities. I’m doing my best.

Most of us never get a voice at events like this, and everything I’m going through is why. It’s almost impossible. So I’m here, being present, holding a space, representing us. Unpaid, unelected, with all the usual risks: that my voice because a substitute for your voice, that I go native in the dominant culture, or that I burn out. Be with me, all of you. Help me do this. Help my message be – not just my voice but many voices, not my experience alone but the experiences of my tribes. Hold me, I’m so weak. Stand with me. I’m building friendships and powerful alliances that will enrich us and connect us and bridge those Gaps.

But I’m so vulnerable. Help me stay human. Witness me. Love me. I love you. I’m in the clinical mental health sector holding a space that love is the essential response to human suffering, and that dignity and freedom are fundamental human needs that services often accidentally destroy. You know how much we need that message in this culture! And I’m not the only one, I don’t mean to sound like a lone hero. There’s thousands of us trying to build a better culture. But we’re struggling to hear each other and understand each other, and people like me don’t often get a voice or a presence – and without people like me – the ones so often in need of services, those with good intentions but no intuitive understanding of my life will keep pouring out their hearts, our money, and their lifetimes of effort to still not speak my language or create a genuinely safe, mutual, dignified systemic response to human suffering. The gatekeepers don’t understand us and we need them to, because they have the power and the resources. They are dehumanised by these systems too, in subtle ways they can’t see but that threaten their humanity as much as – perhaps more than the threat to service users. No more, please. No more. All voices, all cultures present. All tribes heard.

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The Power of Art

Today I read a beautiful book called Hate that Cat by Sharon Creech. It made me weep, it was so beautiful.

We, the 30 or so of us who make up Sarah, do not share our personal names. Now, we’re pretty relaxed about the whole multiplicity thing. Open and out! But, we never give a fixed number for how many parts there are in my system, because I never assume that our system map is completely accurate and finished, and I’m comfortable with that.

We have never been happy about openly identifying as individuals – on many blogs by multiples there will be a page where you can read about their system members – and I’ve always admired that, but it makes me feel incredibly exposed. Because we are highly co-conscious and switch many times a day, there’s a degree of fluidity, of somewhat ‘integrated’ functioning. In arguments a whole bunch of us may switch through, speak our piece, finish each other’s sentences, drop back inside. There’s a sort of unconscious dance between us, a façade of unity, and a lot of largely unconscious and instinctive effort to prevent anyone from noticing switching or the differences between parts.

Some of us would love to identify ourselves openly and use our real names, but for others this is an unthinkable violation. The degree of exposure stress is intense – far worse than stripping in public, for some of us this is more akin to taking off clothes, then skin and bone, pulling out organs and uncurling brain matter for people to play with. It violates a deeply held need to pretend not to be multiple. Because multiplicity has worked brilliantly for us as a way of navigating horrible situations, but revealed it can actually make you more vulnerable rather than less. Every time someone not incredibly close to me has noticed or had their attention drawn to an obvious switch, very bad things have resulted. People are positively phobic about switching, and scared people do not react well.

For us, our names are also triggers that often cue a switch. Talking about a part and using their truename will frequently bring them out – or at least to the surface to hear what is being said about them!

Names and identifying ourselves individually are highly personal, private, intimate things. Only my lover, my very closest people, at this point are granted that information. I do not even permit my shrinks to know this or know me like this. This may change later, it may not.

Our feelings on this matter are almost certainly informed by our background in sci/fi and fantasy. Anyone who has loved works such as the Chronicles of Morgan, Prince of Hed, or the Earthsea cycle will recognise the idea that names have power, and that truenames are intimate. Does this mean I’ve imagined my multiplicity to fit with wild fantasy ideas? Snort. It means that my experience of my self and the world has been informed in many ways, by many people, and for me writers have often been better guides than shrinks. I’m grateful to have books like these in my life. I’m grateful to be a writer. And it’s not just writers – theatre, songwriters, painters – all the arts. They tell us so much about what it is so be human. They are so real and so raw and so essential to my life. Without Cave, or Bradbury, I would not be here. I would have broken, broken far beyond repair. I needed others who saw the world the way I saw it, who hurt, or hoped, or learned, and shared in such ways that I felt what they felt, lived their lives with them. I have written often about my love of the arts, how much they have given, how they are the foundation of my ‘mental health’.

Before language about multiplicity, there was just the noise inside. Just the kaleidoscope shifting as switching changed everything about the world. We wrote to each other. We wrote hate. We wrote terror. We wrote love poems. We wrote to see ourselves, and re-read what we had written, and slowly learned about ourselves.

Hate that Cat is a book in poems. It reminded me of that process – instinctive, inarticulate, confused, driven, full of pain and bewilderment. Not done as a ‘therapy’ as ‘obedience’ to some grant recovery plan. Done, in fact, in opposition to those who accused me of wallowing. But somehow my lifeline to my self, my mirror of the world. I understand understanding yourself and your world through poems. They are our first language, our first connection, our home. Other people have other first languages.

How blessed I have been in this. We who write ourselves into being at the edge of the night, how fortunate we are. There is so much richness in the works of those I love. They have been my friends, mentors, parents, companions, ghosts. They have held my heart when it was too broken to live in my body any more. They have kept alive a dream that one day I would have a place in the world, a tribe, a sense of connection. That one day there would be love, there would be intimacy, closeness, people who could hear my soul, those who knew how to listen. Or at least – that there had been others like me, even if they were now long dead. I might be the last of my species, ruined and broken and hopeless, but I had a species. Other people also had breakable hearts, had bled in poems. I might be alone but I was not alone through all time and space. Not the only one ever.

That was, and is, deeply precious to me. Isn’t this what we all need? Isn’t being human finding a way to sing the song I’ve sung to Tamlorn, and finding people who will sing it back to us? To be loved that deeply. What does that have to do with art? Everything. What does art have to do with pain, madness, grief, suffering, mental illness? Absolutely everything.

Gifts from my Tribe

So much is happening it’s hard to find time to write here at the moment. Life is wonderful. Everything is taking off. My mind is so clear and so full of ideas and connections. I’m having to be careful around overwork – being driven and destroying my new found health is a particular vulnerability of mine. So I’m matching my work week to Rose’s as much as I can. Working when she works, coming to bed when she does, getting up with her in the mornings. Not only is it helping to get us both back more in sync with each other, it’s forcing me to take much more time off than I would otherwise. This is making me very, very efficient when I do work, and thrillingly happy to be having time for fun, family, rest, reflection, and pour some of this energy back into my family, friends, home and garden. I’m so well at the moment, and so happy.

Two really wonderful highlights of the past weeks have been gifts. I was taken to see Cirque Du Soliel’s Totem as a Christmas gift by my best friend. It was stunning. What an experience! And the most perfect rejoiner to my visual artist lecturers who have imbibed the modern visual arts obsession with ambiguity – in their words, giving space for the audience to come to their own conclusions about a work and bring their own perspective to it. In the words of media tropes: “real art makes no sense”. This is a major point of difference between my own art and the kind that gets my lecturers excited, I am intending the clearly communicate meaning. I want my art to make sense to my audience. It’s challenging at times to love a kind of art that’s not wildly embraced where you study art. Totem was beautiful, clear, emotive, moving. Great art can be very clear indeed. It doesn’t have to be, but it certainly can be. That feels wonderful.

The other wonderful gift was a shed. Combined birthday and engagement present, this is absolutely wonderful. Just look at it!

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We haven’t even really started to fill it yet, but already it feels like I’m living in a new house, there’s so much more space indoors. My two bedroom unit fits myself, my partner Rose, our three cats, our medium sized dog, our combined book and DVD libraries (which are considerable), all the paraphernalia for my face painting business (which has henna kits, glitter tattoo kits etc), all the belongings of each of my networks: the DI, the HVNSA, and Homeless Care SA, the library of books related to each of those networks that I loan out, and my art studio, and all our baby items including a fairly significant collection of baby clothes, baby carriers and wraps, a fantastic huge pram and bassinet, a change table (also really appreciated gifts!) etc etc etc. It’s rather a lot.

With this extra shed I have room to start breaking down the mess, compiling what isn’t needed in the house itself, sorting camping supplies, packing away tools, all sorts. I’m thrilled. I’m tackling the house but by bit and it’s wonderful. The kitchen functions. The floors are easy to clean with our new vacuum cleaner (another fantastic gift for my birthday). The lounge has heating and cooling. There’s a whole shelf of board games for our game nights. It’s the most wonderful home.

This is the tribe I’ve been talking about. I’ve been so lucky with such support. There are friends who listen and give me great advice on bad days, people who send me money so I can pay for fuel or plane trips to conferences, friends who pass on items they don’t need anymore like their beautiful pram, people who share their ideas and experiences, share my passion for the networks, include me in training, help me find the people I need to get my projects off the ground… This is much bigger than just me, now.

I gave my recovery story talk to the Tafe students again this week. It was wonderful. I told them about being so alone in the world that when my car broke down there was not a single soul to call for help and no money for the RAA or a taxi. I abandoned my car and walked home, sick and in terrible pain, alone in the dark and very afraid. And look at me now. I have a tribe. They are generous, loving, caring people, and we look out for each other. I’ve been there for them, some in little ways and some in big. I’ve looked past bad first impressions or things I thought were weird about them and they’ve treated me with the same grace. Some relationships are closer than others, some are easy and some more complicated. Together, we are so strong.

I could disappear, into work. Into study, busyness, into important things, important meetings, important people, the doing. And my heart would wither and my health would fade. There must be being also. There must be time to sit and laugh, or cry, or reflect. I’m not good at using health wisely, I’m very out of practice. I’ve so rarely had any! But I’m determined not to just work, not to miss out on my life, miss out on my people.

I found out the other day that a friend is in Intensive Care with kidney failure. I can’t visit, I haven’t heard anything back from her family. I don’t know if she is going to pull through. She’s in my thoughts every hour. She’s the most amazing person, her story is incredible, so much wisdom, so much patience and compassion. She’s very dear to me. I’ve always wanted to ghost write with her, to tell her story to a wider audience. I hope, deeply hope, that I one day get the chance. I miss her already.

This is my life, and I don’t want to miss any of it. It’s extraordinary.

Painting mandala stones

Rose and I have started having craft nights some evenings, now that my intense work phase has eased up. We’re really enjoying it! Recently we’ve been painting stones, inspired by this YouTube video and this one too.

I brought these stoned home from the beach where I stayed overnight in my van on Mothers Day this year. It was a very liberating, very moving experience, and I wanted to bring tokens home. One we’ve kept for ourselves and put under Tamlorn’s tree in the backyard. The other has been given to my Mum, who would have been Tamlorn’s grandmother, to honour her grief and relationship. Each has a little gecko, which was our name for Tamlorn while they were trying to stay ‘sticky’ (alive).

For more amazing stone paintings, see here and this fantastic artist.

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