Rose is away

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We miss her. At least, when we stop working and slow down, we miss her. This is how we usually sleep when she’s not around: the extra room in the bed occupied by books.
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She’s away on holidays, coming back tomorrow. It’s been a bit of a challenging trip as she’s very broke. Tonight had been especially hard, she fell today and damaged her ankle, then wound up in hospital this evening for it. It turns out to be bad tendon damage rather than a break which is good news.
I’m tired and teary and need some sleep. Last night was severe nightmares. Today was surprisingly good, lots of catch ups with friends. Not much admin, sadly. But I’m tired now, been brave and adult all day and now just need a cuddle.

Sewing night!

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I’m having an awesome day. My car came back completely repaired and running properly for a few hundred dollars from the mechanics I went to for a second opinion after a mechanic I’ve only seen once told me it needed a grand or more work to achieve that… Happy happy!

I’ve hung out at maccas all day waiting for my car, with Rose’s laptop, and got so much admin done I’m considering making that a regular thing!

I’m now hanging out with friends, eating macaroons and working on some really cool trousers to wear to work. I got really bad bruising from the fly and button on my regular work pants recently, face painting for 6 hours where you lean forwards is hell for that, so I’ve taken to painting in yoga pants (pantaloons) since which is brilliant, but I need some more. I found great green cheesecloth down at spotlight so here I am. I’ve loved green cloth ever since I read Playing Beatie Bow in high school, with her description of a pea green dress. Hope these work out, but having a great day either way. 🙂

My Garden

I came back from Melbourne to a wonderful surprise, my Mum had done hours of work in my garden. The lawn is mulched, most of the plants that could be planted out have been, and the rest have been grouped together for easy watering. I love it so much! So does Sarsaparilla who spends most of his time sunning himself outdoors these days.
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I have a lot of herbs, some fruit trees (fig, lemon, lime, mandarin, pomegranate etc) and beautiful flowers all mixed in together. Here’s some pansies next to my old lounge out there:
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This is my new favourite place to sit. It’s a bit sheltered so my really stressful neighbor can’t see me. I love eating breakfast out there or having a cuppa late at night. Between the new garden, and the great work area for my business stuff (in my dining room) I’ve fallen back in love with my home. I’m really really sad at the prospect of moving out sometime. I’ve planned more herbs and flowers and I’m watching all my roses bloom. I’m so happy to be here.
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We’ve been starting to go to house inspections which is super exciting. 🙂  Rose and my sister are hoping to move in together somewhere very close to me, with the idea that sometime mid next year I’ll join them. This staggers the big move a bit, gives pets a chance to get used to each other and keeps lots of backup plans in place in case something doesn’t work as well as we’d hoped. I’m feeling very settled and very blessed. 🙂

Community and dreadlocks

I’ve been trying to write a post here for a couple of days, but life continues to be hectic, mostly in a good way. 🙂 I’ve snatched a moment now where Rose, my goddaughter Sophie, and her Dad are all napping. I don’t do naps. I blog!

News! This is what my shower currently looks like. It’s been blocked since Friday. Can’t use the bath either. So I’ve been cleaning myself under my sprinkler, having sponge baths, and borrowing friend’s showers.
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This is the bucket of tree roots a plumber has pulled out of the drain so far. Some of them are quite large! Apparently someone will come by sometime this week with a high pressure jet thingy and blast them free.

Until then, I’m glad I own a sprinkler and thank god for friends willing to share bathrooms.
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For those of you here who may not have caught up with things, I now sport a whole head of beautiful dreadlocks! I got them done on a whim while in Melbourne, after the parts who can give talks and be brave and whatnot made it abundantly clear they were not impressed about doing this with really boring hair. It seemed a fair trade. So after waking past this shop:
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I said to myself, this is my kind of place. The lovely Weird Sistas shaved the sides back and wove the most beautiful, natural, clean, product-free dreads I’ve ever seen.
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More than that, we had the most wonderful conversations about life, community, getting screwed over, love, voices, parts, taking risks, and serendipity. I was utterly blissed out and I love my dreads. They are beautiful, smell amazing thanks to the cinnamon spray I got to take home, and incredibly easy to care for. My usually hyper sensitive irritated scalp has settled down considerably since I’ve had them woven in. Happy!

Rose is inspired and excited, and hoping to take their classes and learn to weave dreads herself. This could be the most wonderful opportunity for us both to be in a creative, artistic, people oriented, alternative field, and we’ve been talking about little else all week!

On a personal level obviously it would suit me to have her able to maintain my own dreads, but bigger than that, doing dreads is no more all about hair than doing body painting is about paint. It’s about community, connection, listening. You’re doing something very personal with another person, something creative, but also an exchange. People who sit for the hours of dreads generally talk. They share what’s on their hearts. You need to love people, to be an exceptional listener, to have a genuine heart for then to do this work. Rose most certainly does.

I love that this isn’t mental health work the way my peer work is, and yet it’s not nothing. There’s something about an exchange of kindness – in my own work, about the privileged space in which people may be literally naked, where you work with them to bring a new artwork into the world. (through body painting) To be more embedded into our local alternative communities feels absolutely right. To be making choices about career that fit so well into our hopes for children soon. There’s so many exciting things afoot!

The other day I mentioned I was hiding from admin at a local belly dancing event. It was wonderful! Piles of beautiful fabrics, jewellery, lovely cheap good food served with gracious care. Henna art, chai tea, women of all ages and shapes adorning themselves, feeling good about themselves, feeling a sense of connection to a community.
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I love these groups so much. I feel so at home in them, the poverty that isn’t brutal, the sharing, the artistry.

I’m finding different cultures and connecting more and more with them. Getting out of the straight jacket of middle class ideals imposed onto a life of low income and disability. There are so many other ways to live. Alone, I’m so, so vulnerable. As a group, nearly anything is possible. People share spare rooms, lemons, recipes, child raising ideas. It’s such a different world from the fearful one that’s been engulfing me, all of us alone in our homes with our appliances for company, trying to stop anything in our world changing. I’m found people who believe in sharing what you have, who think that blood doesn’t make family, who understand that life doesn’t always go to plan, and that sometimes that’s a wonderful thing.

I’m not so afraid of winding up homeless again anymore. I love and tend to a whole community of people who love and tend me back. I think if I fall again I won’t be alone. I’m finding different ways to live and love and risk, and that gives me so much hope.

The Cape and the Dishes

I’m home now, my brain woke me up after a ridiculously short amount of sleep because it’s trying to kill me, clearly. I had a whole stack of thoughts and ideas about the possibility of a new branch of the Hearing Voices movement here in SA, about the DI Inc, about Bridges and organisations and boards and corporations and how the system works and the nature of all systems and… you get the picture. I scrawled notes in my journal and tried to convince myself to get more sleep. I so rarely win those fights with my brain. I wound up on the phone having an excitable conversation about changing the world and making great art. Super hero cape mode engaged.

Then I got up and remembered the bathroom desperately needs cleaning, the dishes need doing, I have a weeks worth of clothes that need cleaning, and a pile of mail and admin. Back down to earth with a bump.

The post conference crash is upon me. I’ve gone from 600 like minded people in a big, overwhelming, huggy mass, to tonight on my own in my unit. All the connections and friendships I’ve just made feel like balloon strings pulling through my fingers and floating far away. A powerful memory of being lonely and lost with no one to call upon in the world comes back to me.

I know this place. It’s not real anymore, it’s memories and ghosts. I’ll endure.
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In the meantime, I have books brought back from Melbourne to contemplate. It’s good to have our researcher part back again, reading and learning and thinking about things. More sleep would be appreciated however. Looking forward to starting to write up our notes from the congress soon too. Trying to keep my footing back in my day to day life.

Road Trip

Rose and I are home from Melbourne! We spent nearly 12 hours on the road today and I feel like I could sleep for a month. Sadly I have work in the Barossa tomorrow at noon, which makes me want to chew my own arm off! Still, it will help with the big dent the trip has made in my wallet.

The driving was easier than I expected, we spelled each other in roughly two hour shifts. Our rule was the driver gets to choose the music, volume, and temperature of the car. This worked really well. We also brought a bag of easy to eat snacks, wet wipes and tissues to keep fingers clean, lots of drinks, and plenty of caffeinated options.

The conference was incredible. In fact the whole week was incredible. I have never had so many profound conversations, new relationships, massive paradigm shifts, offers of support, and amazing opportunities in my life. I am so glad I did so much work before I got there to be able to take it all in. My head is still together although I am exhausted. I can recall a lot of the conference and I’ve got pretty extensive notes to help me too. (I plan to do my usual write up on all the talks I went to with links to the speakers for all of you amazing people who couldn’t attend) I feel like I have been eating entire planets and now need down time to rest and digest. The world is a very different place for me than it was a week ago, in so many ways.

How prophetic my dream was, that I still have so much to learn. I have learned so much, and yet that process continues, the more I discover the more horizon I find yet stretching out before me. The world is an amazing place. There is so much hope in my heart. I think I have found new ways forward for myself as an artist, as a peer worker and activist for social change, and as a part of a massive movement on behalf of all of us who suffer and struggle due to dissociation and all the other things so crudely termed ‘mental illness’. I’m not alone with my passion, I have people behind me who care deeply about these things too. And with them behind me, I can suddenly do so many things I could not find the strength for alone. Things are going to change around here!

But first – rest, sleep, dreams, and mulling. First the sitting around in small groups and speaking with people I love and respect, chewing things over, spinning it all into threads we can weave with. I am in love with my life.

World Hearing Voices Congress 2013

The conference is incredible. I’ve ranted, wept, hugged, frantically scribbled notes, sat and thought, connected, and learned so much. I promise I will share things with you when I can. For now – Rose was assaulted while exploring Melbourne, she is physically not harmed but was very distressed. We have managed the situation well and fortunately she’s booked to come in to the congress tomorrow with me. I have my talk ready to go for tomorrow and have done a major re write of the Dissociative Initiative website and added all the notes people may want for the talk. I’m exhilarated, sad, tired, and grateful.

Sarah K Reece's avatarThe Dissociative Initiative

Day one of the Congress is over and it has been an amazing experience with deep conversations about identity, meaning, madness, power, community, and diversity. Dissociation and multiplicity are both featured topics which is exciting and wonderfully inclusive. If you are interested in following the congress as it unfolds, Sarah is sharing quotes and thoughts on twitter @sarahkreece. We will be writing more about the conference once it is over.

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Blissfully happy in Melbourne

Rose and I drove through the night to Melbourne last night. We drove through banks of fog, through fields and scrub, we saw the sun rise, the dawn chorus, the Grampians. It was shattering and magnificent.

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We arrived this afternoon, we’ve booked a room in a family home instead of a hostel. I’m thrilled with this decision and feel utterly at home.

We unpacked the car, showered and crashed for some sleep. In the evening Rose woke us to go and find dinner. Our kind hosts directed is to a local Vietnamese restaurant which was just perfect for my fragile state.

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This evening has been utter bliss. I love Melbourne. Every time I visit I fall more in love with it. We went for a walk and found beautiful second hand book shops. I couldn’t restrain myself from buying a beautiful book on neuropsychology. The shops are quirky, there are hand made art and items every where.  Rose and I find a coffee shop and order chai lattes with honey.  A live jazz band is playing, with a pretty woman in a red cotton dress leading on trumpet.  The tables have lamps that cast soft light onto the yellow plaster walls.  The toilets have long scrawled graffiti conversations all over the walls.  I feel deeply relaxed and at home.

We buy eggs and bread and wine and maple syrup ice cream and come home.  A day ago I was frantically re writing the DI website and preparing my resources for this conference.  I packed into a manic 48 hours about 2 weeks of work.  Much more unusual is that I’ve been able to come down off that manic high so quickly.  We’re switching constructively,  easing the build up of tension before muscles seize,  being able to be entirely in the present moment.  It’s magic.

It’s also been wonderful to have a conference to write for again,  to have the researcher out again,  reading,  thinking,  hungry for material and gnawing big ideas down to small concepts that can be shared.  It felt so good to walk into a bookshop again and want to buy all the books!  We’ve been burned out this year,  we’ve read almost no non-fiction.  Tonight we’ve read more than we have in months.  I’m so deeply looking forward to touching base with my community.  I need this. Seeing all the wild creativity around also woke those longings in me,  to go home and find my paint and ink.  To be liberated from those destructive notions of what art should be,  must be,  how it must be created,  what an artist is,  and to be able to play. 

I feel renewed. Tonight I am utterly content with my world. 

Hanging out with a 3 year old

The other day I was hanging out with Rose, her mate, and her nephew. The nephew is 3, I’m going to call him Rocketman. We went off on a long drive and Rose was teaching him how to figure out what words rhyme. Tunnel and funnel, dog and frog. My favourite was necklace and fishface. The endless string of questions that kids of this age ask start to be presented in rhyme which is a weird twist. I like turning the questions around on him, especially when it feels like he’s asking for the sake for asking ‘But WHY, Sarah?’… ‘Why do you think?’ Sometimes you get great answers.

Sometimes the questions are too damn good to answer. Rocketman asks ‘Does wee pee kill zombies?’ Aw man. I hope so, kid. That would make surviving the apocalypse a whole lot more manageable. It’s all down to finding a drink.

I’m still sick. Hope your week is going better.

Zoe helps with admin

I’m feeling ill still and doing admin at home today. The plan is to get everything ready to drive over to Melbourne for the congress with Rose on the weekend. Tonks is gradually improving, she has started eating again and moving around the place on her own. Zoe helped out with the admin but sleeping in amusing formations on the couch.
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Fear of the dark

So another sinus infection stakes it’s claim on my face. The locum reckons it’s going bacterial but my enthusiasm to take antibiotics again is negligible. I’m run down and tired and already have thrush so thanks but no thanks! I’ve cancelled work for the next few days as I’m developing signs of a chest infection too. Have to be well enough to drive to Melbourne for the hearing voices congress next week!

Rose has also been sick with gastro, mercifully brief but horribly unpleasant, so we’ve been unhappy comrades in arms for a few days. She’s also been under a lot of badly timed job stress. Yesterday I spent half of it winning medals for being the most useful and supportive girlfriend, and the second half winning medals for being the most overwrought and unhelpful girlfriend. Dammit. Oddly enough when I crashed she rallied in that funky little see-saw turn taking thing couples can do. Thankfully!

My life only tends to work out in small windows before the next really bad thing happens. This makes me pretty anxious and reactive to a whole bunch of triggers suggesting a new crash is about to happen. I once went to see a shrink for help to make new friends. I knew I had DID but wasn’t out about it to anyone, rather was deeply deeply afraid of anyone finding out. I talked with this shrink about how lonely and emotionally unstable I was. We talked about a common painful dynamic for me at the time – having a moment of really good connection with someone, perhaps a new acquaintance, and going home feeling like things are looking up! Excited about my future, really happy with how the conversation went, reassured that I would make new friends. And then the dawning realisation over the next days of weeks that this wasn’t the case. The wonderful day was not the start of a new life, not a sign of good things to come. It was an exception. That friend would be busy for the rest of the year. The acquaintance wouldn’t come back to uni. The compliment from the boss didn’t mean I was going to be rostered on for more shifts.

The shrink advised me to live entirely in the moment. To take everything at face value only and stop hoping that life would get better. It’s the hope that makes you unstable she advised me. Stop thinking about the future. She was right, of course. Her solution was a bit drastic. At the time, without hope that life would get better, I would have killed myself. The instability was painful but worth it for me.

Narrative therapy is a fascinating field I’d love to know more about. A kernel of an idea about it is this : the stories we tell about our lives and who we are are profoundly powerful. In my life two stores compete for my attention. One is a story of hope and acceptance. That how others have hurt me is not my fault. That it is not a failure to be poor, or sick, or hurting. That life can and does get better after awful things have happened, that scars and hearts heal and love and joy live alongside anguish.

The other sorry is darker. That I am broken. Fatally flawed. Doomed. That nothing I can do, not my best efforts, all my strength, all my love, can stop the dark. That nothing works out for me. Life requires risks and my risks send me tumbling into ravines.

This story has weight for me, a lot of evidence behind it. It becomes something I watch for, signs my world is ending again. A dark foreboding. A quiet despair in my heart. So I make plans, wonderful plans for my life. And I have nightmares, where Rose dies, where our child is terminally ill, or abused, where we both end up homeless with little kids in the back seat of the car. The dark eats my dreams. A little voice inside says if you’re thinking of having kids soon, you’ve got a shrinking window in which to kill yourself before you leave them with the burden of a dead mother.

This is horrible and people are often horrified when I talk about it. They try and reassure me that life is better now. But once bad things have happened to you, you know in your bones, they can again. It haunts me. In a weird way it’s a relief when they do happen and I can stop waiting for them, stop being encouraged to believe in an ideology about good things happening to deserving people that I know is mostly an illusion.

That relief reminds of the cycle of domestic violence. You get the slow building tension, then the rage/abuse/violence, then the honeymoon period where everything is wonderful. Then the tension builds again. People get so stressed and exhausted by the tension building stage, the paranoia it inspires, the knowledge that violence is inevitable, that they sometimes deliberately act to trigger it.

So, I’m in a DV cycle with the universe? (Is that what the crisis driven aspect of Borderline Personality Disorder is about?)

Last night, sobbing hysterically as Rose sang to me and rubbed my back, I understood how hard I work to keep believing in hope. Not a pollyana hope, a darker kind of hope. That my life, even with pain, will have meaning. That choices I make count. That I have some power to bring light into my life. That I can build a philosophy that understands loss, death, and failure, so that they wound but do not destroy me. That I can live in today, and dream, and if the sky falls tomorrow I can howl then. Keep building the ideas of failure and tragedy into my world, into my hope, into my love. Keep chasing freedom when the trap closes about me. Get help to hold back the dark. Someone to hold me when the nightmares come.

Tonks has also had a rough day. We took him to the vet this morning to be desexed only to discover that he is a she. She’s now sleeping on a shelf in my studio with her fancy new cone. Poor love.
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Bringing me back to myself

Last night, Rose was sick and I was coming down with another sinus infection – oh joy! So instead of roaming around Pride March with most of our friends, we stayed home and walked TV. Rose admitted to being a captive audience so I put on one of my favourite movies, Cyrano de Bergerac – the version with Gerard Depardieu. I love it so much, it’s been a couple of years since I watched it. It’s part of my ‘cannon’ of books, films, and poetry that I usually revisit about annually. I wept and wept through it. I know parts of it by heart and yet it still moved me deeply.

It got me thinking about this ‘cannon’ collection and what they mean to me. After Cyrano, I couldn’t help but take up my pen and write a poem about it, about remembering that for me, poetry is the meaning of life. It is how I live and feel and breathe and experience the world! I don’t mean the act of writing, or the ability to turn a pretty phrase. I mean something else – passion, frailty, beauty, something more bohemian. It’s about speaking from your heart, living life large, stargazing, nakedness, joy, grief. I’ve gone too far away from these values. I kept trying to fit myself into a world I will never fit. I miss my pen, my ink, my heart.

So I wrote and remembered what it was to write, I thought about the philosophy of Cyrano that so speaks to me – him admonishing a character who won by secrecy and deception – that he had not won but rather “gave up the honor of being a target”. His pride, his enthusiasm for struggle, his understanding of the emptiness of success and the great courage it takes to love. “Winning’s not the point. The fight is better when it is in vain!” These ideas I cherish. They strengthen me. They bring me back to my own heart, my own ideals. I weep and am restored. I remember what I have been fighting for and why.

This is what my canon of art does for me: it brings me back to myself. I spend my life in a world that does not think or believe or desire what I do. I am small, I lose my way. I imbibe, like poison, ideas that would kill me, would grind me into the dust. Ideas about life and poverty and value. My canon are my defense, they restore me to my own beliefs. They wake passion and courage within me. They remind me that all the ideas of the world are only that, ideas. Little prisons made by the small thoughts of little people. Whereas my dreams, they open up my world. They inoculate me, rejuvenate me, restore my heart to the place where it soars.

This is the difference between believing I am ‘white trash’ when living in a caravan park, and feeling lucky for my gypsy life. I open up my heart and all the world floods in, all life blows through my soul, with such pain and such untempered joy.

So I come back to them, over and over, to heal myself from the wounds of a world that does not live like this or understand it. It is about being deeply alive. It is a way of living that I treasure.

Beautiful Cyrano, who failed in so many ways, and was yet true to himself, lived gloriously. To live a life like his I would be doing well indeed. We measure our lives by standards that mean less than nothing to me. Worse – we get only so little time, so few Autumns, which are eaten by lethal ideas like – death is something that happens to other people, like – I’ll have time to do that next year, like – I must achieve to have worth. We get so little time and it is so easily devoured by the philosophies of the empty and deranged.

In poetry I find my meaning and my hope. It is a philosophy I cherish and must nurture more. It takes me beyond the pain of failure, the prison of sickness, the wounds of deep loss. Beyond nightmares and despair, the pit, the black sea, the place where all the world becomes blood. It is breathing far under that water, it is staring into the face of the nightmare, it is a scream that becomes a song. It is joy at the edge of death. A flower worn close to my heart. Sunlight on my skin, rain on my mouth, lover in my arms. All things, embraced, the cup drunk deeply from. Authenticity over positivity. Honesty over comfort. Passion over an easy life. I have not failed, I have lived. For someone fractured by dissociation, who once walked as the living dead, left numb, deaf, blind by it – this belief in life, this desire to be alive and to experience it is the antidote to my private hell. Learning how to protect it, how to run from buildings on fire, from lovers who carry cages, from hands that trap and bind, that is my task. Burning brightly, I walk in shadow unconcerned. I speak of hope to other hearts. I can remind people that pain does not destroy life, it is a dark thread in a tapestry. That even our tears have beauty.

Always coming home, then, a dance – back out into the world, home again to these keepers of my heart – Cyrano, Bradbury, McKillip. The artists who whisper truths in my ear and keep my heart from cages. How I love them. Bless them all.

New business area in my home

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My Mum visited yesterday and put up shelves for me, so now I have a single place to store all my face painting, henna, glitter tattoo and so on products and resources. I’m very excited about it! Today has been dedicated to admin and housework. And booking in new gigs. Hurrah for me! 🙂

Got so busy with it all I almost missed a shrink appointment, now sitting in the waiting room feeling annoyed that I’m paying to be here when I’d rather be finishing my to do list!

Moving at a slower pace

My gig yesterday was canceled so I took the day off and Rose and I went up to Hahndorf to wander around, like we’ve been talking about doing for about the last year. It was blissful. Is very unusual for us both to have a day off in the weekend that days and I really enjoyed being able to amble around. That evening I was going to a friend’s pirate themed birthday party, and I want going home beforehand so I wound up meandering around Hahndorf dressed as a pirate. As you do. I had pistachio and rose ice cream.
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Today, I painted a lot of small children at a birthday party, which went well. My skills continue to improve which is gratifying. Every gig I get, I decide to focus on improving a particular skill or design. I’ve been working on my sponging skills lately and learning how to load a sponge with just the right amount of paint, because that can be tricky. I’m making progress.

Reflecting this morning with Rose that all my anxieties about the future come down to a very simple task: make today good. It’s all I have and all I can control. With enough good today’s, I’ll built exactly what I’m hoping for.

I’ve also finally realised that the stress I’ve been under due to housing choices is not my fault. It’s not fair that our public housing system is so clogged up that abusive people maintain housing while neighbours are driven out. It’s not fair that it takes so long to be allocated a house that wanting to try living with my lovely girlfriend is a massive risk. I didn’t do anything wrong, and the risks shouldn’t be this high. It should be okay to test out different housing arrangements, to pursue love, to need extra support for a time, to follow your heart, without risking homelessness and chronic housing stress. I vividly recall watching the lives of the women who were allocated housing from the domestic violence shelter I was once in. All were ecstatic at first. Most lost their housing over time. They went from group housing to being terribly lonely, struggling with neighbours, break ins, and wanting to move in with lovers. Many wound up back on the streets and in shelters again. I swore to myself I would not be one of them. They were treated as stupid, unable to look after themselves, probably borderline. I wanted to be different. But life is not static. I’m not raising a child next to my neighbor. I want to be safe, but I also want to pursue love. The system sucks. That’s not my fault. I can let myself of the hook for being stressed by it. It doesn’t mean I’m doing anything wrong. It means life is complicated and the supports for someone like me are inadequate. So, what else is new. Today is good. I’ve made kids happy, I’ve hung out with my gorgeous girlfriend. I’ve eaten good food. I’m tired but proud of myself. Later I’m going to shoot things in game. I’ve been promised ice cream. Today is good.

Funding for the Hearing Voices Congress!

I’ve just had great news! I have been offered a subsidy for entrance to the World Hearing Voices Congress at the end of this month, at which I’ll be giving a talk ‘Supporting someone through a dissociative crisis’. The plan is to drive over together with Rose, and use budget accommodation, or mump off someone else with a spare room there. 🙂 I’m so excited! For all the people here in SA who can’t get there, I’m working on plans with MIFSA to offer the same talk here in the near future. 🙂 Stay tuned!

Fibro hangovers

Days like this are blah. I feel like I was up most of the night drinking and dancing. I was in fact, painting kids faces at Adelaide Zoo, then hanging around with some friends in my dragon onesie. Not a drop of alcohol has been imbibed by me this week, yet this morning I wake with dry mouth, furry tongue, headache, heavy limbs, and bad body pain. Fibromyalgia can give you hangovers for parties you didn’t go to. I feel awful and I have admin already overdue that needs attending to. On the upside, with some ibuprofen, time in bed, and lots of water I’ll bounce back okay. Looking forward to a celebratory dinner tonight with family and friends. Dimly aware that the rest of the world is off doing things and being productive. It’s a beautiful day out there, I wish I had a bed in the yard still I could lie on and nap in the sunshine. I’m drugged with phenergan and drowsy with bad dreams. Sometimes the kitten comes and sleeps next to me.  Life will just have to go on without me for a bit. I’ll catch up soon.

I got a stack of medical test results back recently which are mostly good expert that I’m running extremely low on iron and vit D, which my gp reckons explains the dizzy nausea episodes I was getting, and possibly some of the worsened joint and muscle pain too. Hopefully with some supplements and more red meat in my diet things will improve.

Ah well. I’ve been working hard lately. I’m proud of myself.

Sophie is my happy pill

Another wonderful evening with my god daughter Sophie. She is developing and growing so quickly, each week that goes by she is so different, blossoming more and more into her own person. I love her so much. Nights like tonight are precious. I cuddle her and all my fears and anxieties about being a mum disappear. She is utterly precious, an important part of the beautiful little community Rose and I are building around us.

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A couple of days ago I was really struggling. I painted for 6 hours on Sat and Sun, free to the public at big days at the zoo, flat out speed painting which left me with severe joint pain for days. Rose and I got home on the Sunday, only to immediately call an ambulance as Rose was experiencing chest pain on her left side, radiating into her left arm. An anxious overnight stay in the ER ensued, then a trip to her GP the next day. The end result was positive, a painful condition unrelated to her heart, which can be treated when attacks occur. I was now seriously sleep deprived and in pain. I got home to discover that I’d forgotten to empty the cat litter tray the night before. All the clean clothes in my room had cat pee on them, and clothes stacked in the dining room were covered in cat poo. When I went to turn on my computer to catch up on all the admin I’d been unable to get to so far that week, it died and refused to boot.

I sat in the backyard and wept, utterly overwhelmed by my life and the insane optimism of planning to have a child when I have a chronic pain condition and mental health problems, to raise a child on welfare, when I feel so inadequate to the task at times.

Today I am so far from that place. I cannot do this alone and I know that. I am finding the most amazing people, this incredible supportive community of other beautiful, at times also fragile and wounded people. There are days I can’t remember that I have friends now, and that they love me. Other days I realise that the lonely years are behind me. I have arrived. I have family, friends, love, hope for a beautiful future. A world in which it’s okay to be mentally ill, safe to be gay, accepted to have disabilities. When I hug Sophie and think how lucky I am to be her godmum, I think this is a good world to bring a child into. This child would be very, very loved.

First abusive, anonymous email

Well, it had to happen sometime. I’ve been writing this blog for over two years, and out about having DID and being bisexual, both of which potentially expose me to abuse, violence, or ridicule in various circles. I received this email recently, from someone calling themselves, of all things, Pig Wheeky:

“I know u. I know your secret. Fat stupid ugly girl-no friends-no one loves u-u cling to your fictitious difference-to prove u r not insignificant-dissociative, gay- what next-how can u look in the mirror-how can u pretend in the face of those who have suffered real trauma-kill yourself-your deceit-your lies r unforgivable -u ir sickening-always know that we see through u. U r harming people that have genuinely survived horror-u r unbelievable-i know u dont care-u r borderline and psychopathic-u cant even look after an animal without rspca on your back-i know u -loser-yes i know-and u know what u r-u would b surprised how many of us c through u-u r your own hell-and u will reap. :)”

What fun. There’s nothing quite like linking borderline personality disorder and psychopathy to really give yourself credibility, and the movement between the personal “I” and attempt to sound like an important majority by using “we”. It’s all a bit pathetic.

I’ve received hate mail before, although admittedly from people I’ve known. The internet opens up so many opportunities for people to behave appallingly and hide behind anonymity. This kind of bullying is the crap that people like me face. Being open about these kinds of things leave you vulnerable to people who fear and hate and who give themselves permission to be abusive to those they deem deserving and still feel like ‘good people’ themselves. Bullying in the form of instructions or requests that someone hurt or kill themselves is common and disgusting. It’s taken awhile for policies in schools and the like to catch up with how vulnerable people can be coerced into harming themselves, to the sadistic delight of abusers who don’t even have to get their hands dirty to inflict harm.

Anyone who uses tactics like this has no claim on the moral high ground, and certainly none whatsoever about how to best care for and support people who have experienced trauma. I don’t believe anyone is insignificant. All of us are unique, have our own stories and paths to walk, our own souls to care for. All of us have to wrestle with the task of how to navigate a complex, at times very painful life, and be as human as we can, to grow into the best we can be in values and character. Some of us grow kinder and gentler through the awful things we experience. Some of us grow colder and vicious. Those who become vile are to be treated with great caution, and regarded with deep sadness. Once they too were innocent. Corruption is always a terrible loss of who they could have and should have been, what they could have brought to the world. We who are abused by them are still, oddly, the lucky ones.

Having said that, we need love and care to survive and endure the cruelty and brutality of these kinds of assaults on ourselves. Every day people suffer due to bullying like this. People are made to feel alone, ugly, less then everyone else. The wounds can be deep, can even be fatal. Love heals. Anger cleanses. Hope brings life. In community and with connection we are restored.

Thankyou to all of the people who love and support me, to the community I’ve been so blessed to find. Remember all the people like me who don’t have this. Look for them, shield them from this kind of destructive hatred. Shelter each other. Help each other to be the best we can be.

Good food and discussions about the future

Today I slept, panicked, worked on finishing all the preparation I need to have done to offer henna art at a gig for the first time on Friday, panicked some more, and had Rose and my sister over for dinner. I’m now back to panicking and henna prep again. It’s been a long day. Dinner was lovely. We made prawn rolls.

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Yum! Rose and I are still eating lots of salads and I’m loving that. Some days lately when my anxiety is so high it’s the only meal I have. It was so nice to sit at the table and share and talk about the future. The three of us are making exciting plans for next year together with housing and plans for babies. I’m so thrilled and so anxious too, there’s a raw feeling when I talk about dreams and ideas about family and community and the future. I dropped my sister home and on the drive back, alone in the night, found myself shaking and weeping. I don’t want to be homeless again. I don’t ever want to be on the run from a violent relationship again. I don’t want to feel trapped again, to be sharing a bed with someone who frightens me or makes me feel deeply alone. I’m pro equal marriage rights but terrified of the prospect of being a wife again. Reading Centrelink documents that explained that if Rose and I share a place – even as flatmates with separate bedrooms, we will be considered by the government to be in a ‘marriage like relationship’ made me break down in uncontrollable sobbing.

I’m also in love, with a beautiful, devoted, loving woman who I hate being apart from so often, hate having to drive back to my own unit at the end of the night, want to be able to support when she’s ill, help cook for, share what I have with. I hate that the government will not allow us to live together but maintain separate finances. It feels deeply creepy to me, state-sponsored prostitution, that I can live with anyone as long as I don’t sleep with them, and sleep with anyone as long I don’t live with them. Weirdly the financial penalties are reversed when children are in the picture, as single parents are penalised where partnered parents are not. I don’t like the enforced dependence, the forcing of what we have into something it is not, into ‘marriage like’ when what we have is built on friendship, is platonic and romantic, is built on freedom and a deep care for our mutual vulnerability and limits.

Hope and fear, dreams, desires, longing and loss. Good food with people I love. Another shoe eaten by the dog, another day at work that leaves me frozen with anxiety. Life is challenging.

Imperfect bodies

It’s been a wobbly week, health limping along on training wheels. Yesterday was great, today is awful. I have endometriosis, which for me means very painful and heavy periods. Endometriosis is a condition where the tissue that lines the womb (the stuff that pumps up, ready to support a foetus if you get pregnant, and then every months sheds as a period)  grows elsewhere in the body, often through the digestive system, latching onto organs and tendons like weeds growing where they shouldn’t. This ‘weed’ reacts to normal monthly cycles the same, shedding and bleeding into the pelvic cavity where it can’t escape. This can make a mess of scar tissue and adhesions, and can cause awful pain if there’s nerves around those areas. Not everyone gets pain, it depends on where it happens. It can also destroy fertility.

I’ve managed for the last 10 years by taking a medium dose of the oc pill, on a continuous basis, that is, not taking the sugar pills except for three short breaks a year. That means only three periods a year, only a week long, and not severe pain. Before I was diagnosed and started treatment, my usual period lasted about 14 days a month, involved extremely heavy bleeding, and severe pain with at least three days in bed. I have vivid memories of trying to work at childcare and manage my periods, weeping with pain in the bathroom. I wasn’t diagnosed until I was almost 20, thanks to a male family doctor, an uptight religious community that treated normal functions as secret and shameful, and myths about what was normal. I’m angry as all hell about this, I suffered a lot as a teenager and was mostly treated as weak and lazy by people who didn’t know better.

Rose and I are now in pre conception care, gearing up towards pregnancy possibly next year. This January I stopped taking the pill so my normal cycle is back. The great news is that all the signs are good that the endometriosis has been contained and even reduced over the years, so my fertility should be intact. The difficulty for me is that I can no longer schedule my cycle around work and other commitments. It’s also frustrating because our cultural taboos against talking about this stuff mean that whenever I’m ‘just sick’ again I tend to come in for a lot of advice about not over doing it and tut tutting about needing to manage my health better. The truth is that none of that would help. What does help (me) is sleep, forms of pain relief that reduce muscle spasms, such as Naproxen Sodium, or orgasms, heat in the form of hot showers, baths, or wheat packs, and avoiding cold foods such as ice cream. My mood is usually very low and I find that I’m often teary and depressed. One or two days stuck at home very quickly leave me feeling lonely and miserable. When I’ve been under a lot of intense stress as a young person, I’ve had an almost psychotic response to the loneliness, secrecy, and pain of these experiences, such as nightmares that the pain was a demon clawing me apart from inside.

It shouldn’t be a big deal to talk about it. Many people have difficulties around menstruation, fertility, sex, digestion, and all the areas of health that we don’t talk about. It’s harder to get funding for cancer research for less sexy cancers. It’s harder to explain health problems like these to friends and employers. There’s a kind of bemused and patronising tone taken to people who ‘fail’ to live up to our expectations that adults can manage digestion, menstruation, and sexual health without anyone else ever knowing about it. Many of us are struggling with issues like these! I’ve seen women in such intense pain with endometriosis, they wind up begging for morphine in emergency rooms, and have to carry a letter certifying their condition so they are not mistaken for drug addicts. I can tell you these women are not just lazy or making a big deal about something everyone has to deal with! I’ve talked with women who have suffered through a long, painful struggle to get pregnant, too sick to work, and too embarrassed that something as ‘minor’ as menstruation causes them such distress to tell anyone but their closest friends about what’s going on.

These things are not that unusual. Embarrassment about them helps noone, especially not young people who are so particularly sensitive to shame and isolation. Every day, people are managing infertility, chronic digestive problems, recurring thrush, uti’s, and other infections, immune issues, and allergies to toilet paper, latex, lube, sanitary items, and their own skin and secretions. All of us are trying to find ways to manage with some sense of dignity, to still feel attractive when we dress up for a date, even if that means making 15 minute stops to pee, finding an outfit that conceals a colonoscopy bag, or trying to discretely manage menstruation while using the men’s bathroom as a f2m transperson.

Human bodies can be fragile, and leave us very vulnerable to shame. I generally don’t talk about my physical health challenges, mostly because I don’t want to make other people uncomfortable. I’m an activist when it comes to mental health but still very influenced by ideas that I shouldn’t embarrass anyone else, and shouldn’t complain about physical health problems. I’m feeling a bit fed up about those ideas. Shame is for people who have done something to feel bad about. I just happen to inhabit a body that is lovely and fragile, and that has issues in some areas like menstruation that we don’t, as a culture, like to acknowledge. I know I’m not alone and I’m tired of feeling alone. I’m not any less of a person, I have nothing to feel ashamed about. Being sexy and adult isn’t, in my opinion, about being able to maintain mystery about our bodies. There’s a humility about inhabiting a body that doesn’t work perfectly, intimacy about being forced to acknowledge our shared vulnerability as people, at having our lovers or house mates understand these needs and at times care for us. No one is healthy all the time. As much as people might like to pretend otherwise, whether as children, in our age, or due to sickness or disability, we all at times will need help and support with intimate functions and for issues we find confronting and embarrassing. All of us will love people who have these experiences and struggle with feelings of shame, ugliness, and degradation. We can let this isolate us, or we can rise above it and embrace the tenderness and humour of having imperfect bodies.

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Remembrance Day

Today is a sad and special day; Pregnancy and Infant Loss Remembrance Day. This affects so many people and yet is so often a solitary, unrecognised loss. These are the people who are often invisible and in pain during celebrations such as Mother’s and Father’s day. Rose has experienced this loss, so it’s something very meaningful to us as a couple. Little rituals like this can bring a most private pain out of silence and into public awareness, can give an opportunity for people who often have no graves to visit, no family awareness of their sorrow, sometimes not even names for souls they have deeply loved. Tonight we light a candle in remembrance of the ones we lose, and with compassion for those who grieve.

Thinking of a future with a disability

Today, I stayed in bed from midnight until 4pm, resting, sleeping, and reading. Rose came home to me after her night shift and it was lovely to have her company, sleeping beside me. She turned up with a bag of groceries and chocolate milk, and hugs for her very tired and overwrought girlfriend. Then friends came round for dinner and brought a big bowl of home made pasta with them. Rose made a salad, and I washed all the dishes from the week and made homemade soft serve icecream. We played cards. By the end of the evening, I felt almost human. It’s so regenerating to be the recipient of such kindness. Another friend gave me a massage earlier in the week, and I was fortunate enough to be given a bunch of free tickets to go and see Cavalia, an amazing acrobatic show with horses, so I went with a bunch of friends and family. It’s delightful to be able to be generous with good fortune, and to have such caring friends who are likewise generous with their time and love.

I’m also reminded that pain management needs to be more of a priority for me with me work. The extra work I’ve taken on lately has been wonderful, but I’m not coping well with the pain it creates. High levels of constant pain wear me down emotionally, I become easily distressed, teary, anxious, and depressed. I need to be more assertive about predicting it and doing things to manage it.

I’ve been thinking a lot lately about having fibromyalgia and how it impacts my life. Weeks like this one, I realise that I am not like other face painters or small business people. I have to close bookings when I’ve reached a certain number of bookings in a week, not because I’ve run out of time, but because I’ve reached my limit of how many hours I can paint and still manage my pain and energy levels. This is hard to face. I’m a small business owner and artist – with a disability. I need to remember this and work around it, not throw myself against the glass wall of my own limitations and leave myself so ruined, and so vulnerable to other people’s misperceptions.

Likewise, I’ve been giving a lot of thought to what kind of mother I would be. There’s many things from my childhood I don’t want to replicate for my kinds – chronic loneliness and alienation, unaddressed trauma, shame… but there are many things I loved and do want to bring to life for my kids. Amazing birthday parties, brilliant creative play, superb organisation skills, learning to care for our home and belongings so we didn’t live in the kind of broken down home that so many other low income children do… there’s a wonderful legacy of fairness and play and adventure I want my kids to experience.

And I have fibro. I can’t live up to it. I can’t be the kind of mum I want to be, put in those hours, with that dedication and passion and effort. I’m grieving this. I have to find a new idea of success, new dreams about what being a great mum might look like for me. I need to reach out to other members of the disability community who are parents and find a path I can be excited about. I need to write an exciting and hopeful future around my limitations.

This is a big shift from my previous ideas that I would keep looking after my health until it was better, get full time work, build some strong financial foundations, and then have kids. I might not ever be able to work full time. I need to work out what being a mum would look like when I’m living in public housing, on welfare, with chronic illnesses, and how to engage that dream in a way that makes the most of what I do have, of my skills and passions and wonderful friends, and limits the bite of poverty, sickness, homophobia, and all the other risk factors I can’t change.

So, tonight, I’ve been thoroughly loved up by some of my very important people. My body is still tired and sore, but my head is clear, so I’ve used the time this evening to tackle another box of paperwork:
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I’ve recycled an entire box of stuff I don’t need anymore;
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packed another box with things that just need to be filed, and created a small stash of things that need urgent attention. I’m very proud of myself. And now, for bed, to sleep, perchance to dream.

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Climbing many mountains

It’s been a roller coaster few days here, seriously! I’m in a really weird place at the moment where some of my friends are going through hell while others are feeling like life is going their way. I’m mostly doing really well, which creates an odd kind of survivors guilt at times. Changes are afoot in all directions… I’ve been fortunate enough to secure a couple of big contracts for my business, which is extremely exciting. A lot of hard work is starting to pay off and I finally have money to do things like pay for an accountant! I’m working hard at the massive amount of admin this generates, and if you don’t look at the state of my house,  not falling behind too badly.

My beloved dissociation support group Bridges is currently taking its first holiday in two years, which is very sad on one level but rather exciting on another… Those of us who have put so many hours into running it are all feeling stretched lately, it’s very tough work being a volunteer peer worker when you have so many other things going on in your life, great things like work, or awful things like sickness and system stress. My goal at the moment is to ease the transition as gently and respectfully as possible for everyone involved, then get back together as people are ready and talk about what next. I’ve set aside a reduced number of volunteer hours a week for myself this year, only ten, and I’m a bit excited about what we can do with that… The format of the whole DI Inc may change too… Everyone involved is deeply passionate and believes that we need an organisation to educate and speak on our behalf, but the truth of the matter is that no one actually wants to run one… We all have other passions, like giving presentations, or education, or creative projects. We’ve only found ourselves in an organisation because that’s the format we were provided with. But it’s hard work, and everyone, me included, has other stuff going on. So, change is happening, which is hard, but also feels good to me, flexible, adaptive, responsive, not locking people into to approaches that aren’t working but looking for new ways to harness that passion without exhausting and depleting the amazing people behind it.

I’m having trouble keeping up with my work at the moment and not getting much time off, but the night before last I invited some friends over to Rose’s place for a games night, and we had a great time. I love games nights, they’re fun, inexpensive, and just about guarantee a good laugh. 🙂
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We made toasties for dinner and some people ordered pizza. I really enjoyed myself.

I’m glad I did because Rose had a rough evening with some trauma stuff and I did my best to be supportive. I drove home at midnight and started cleaning my kitchen up, only to discover that my manhole cover in my ceiling had been opened up! No one knows who did it, which is very creepy. So Rose calmed me down over the phone, and Zoe was worth her weight in gold. She may be a total nuisance at times, but nights like that she makes up for it in spades. There’s no other way I could have slept in my own home that night. Tonks did his bit by cuddling up to me. I didn’t get to sleep until around 5am, and then had a horrific series of nightmares, waking regularly, before giving up around 1pm and getting up. I sat out in my garden with some breakfast to clear my head and that worked wonders.

So here are some of the heroes of the night, looking suave:
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When I started to hallucinate a few songs, Rose reminded me that Zoe would react if they were real. That was very helpful to remember. A friend of mine who struggles with psychosis used to call her dog her Multidimensional Seeing Eye Dog because of this truly wonderful reality testing quality. I’ve always loved the phrase, there’s truth and a wry humour to it. Pets are amazing.

Many wonderful developments

It’s been a brilliant day here! I provided body art for a mental health stigma reduction event this morning, secured a whole bunch more gigs this afternoon (I am busy! I am basically booked out for all of October!), then collected the mail which included my new exciting dog crate which will make it possible, I hope, to sleep over other places including camping with Zoe!! I also got my new henna aftercare cards, my new updated post cards, and my new cheapie fountain pen to replace my lovely lost one. I feel like a poet again! One cannot be a poet without a fountain pen. Well… it’s better to have one anyway.

Then I did a whole lot more business admin (Sarsaparilla helped)
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And read a bit more about anarcho-syndicalism to see how it might be relevant for creating powerful groups in mental health, more indepth info here. Tonight I’m going to hang out with friends and have pizza. Tomorrow I’m going to sleep. It’s been good day. 🙂

Overdosing on cute photos

Today I helped a friend paint walls, and then did grocery shopping and a lot of admin. Because I like you, I’m not going up talk about it. Instead, you’re getting photos of babies and kittens. You are lucky!

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My gorgeous god daughter Sophie is nearly one now and had figured out how to crawl. Every week when I visit I feel closer to her. I love holding her and playing with her. I was a little worried at first that maybe is only bond to her as a tiny baby and detach as she grew older, but the reserve seems to be happening, I’m more comfortable and confident and in love each time I see her.

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Given my own baby plans in blessed to be inheriting get outgrown clothes and belongings. This week I was given her delightful pea green carrier! I adore this. The rest of our baby stash is living in Rose’s shed, but the carrier came home to my place where I can admire it. Tonks decided to try it out for size. Provided no babies are allergic to cats I think we’re going to be okay 🙂 What we do about bouffy Zoe I really don’t know.

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So there, don’t ever say I’m not good to you. 🙂