Superman Falling in Embarrassing Ways

I had a very dark night last week, unable to calm down intense distress for many hours and terribly afraid for myself. I would use all my skills to settle and even get myself to the point where I fell asleep, only to wake a few minutes later in panic again. I was able to get an emergency appointment with my psychologist and went along – for the first time in my life – in a state of hysteria. She’s diagnosed me with exhaustion, and helped me get a quick appointment with my gp for meds to calm down the intensity of my distress. I’ve now got a script from my gp for anti anxiety meds, however they are not pregnancy safe so they are a last resort.

How can this year have done such harm to me, I asked the psychologist – I’ve had much worse years! You’re thinking in terms of trauma, she said, look at all the loss and grief of this year instead. They are significant. Stop everything and do whatever you need to to rest.

So here I am. Most days have two distinct aspects to them, one in which I’m genuinely fine, even productive, cleaning and cooking and hanging out with friends. The other in which I feel like I’ve fallen off the planet. I can’t catch my breath, all of life feels without meaning or purpose, and I’m tormented by fears and existential questions that strip me to the bone.

I found this lovely series of artworks that resonated with me: Superman Falling (actually titled ‘No. Superhero’ by Ole Marius Joergensen). There’s something so terribly human about this place, this state, a kind of cultural heritage none of us would choose to have. Nobody wants to be quite this human. I certainly don’t, although sometimes I think I catch a glimpse of something beautiful in it all. At times I’m saturated by death, surrounded by the void. I feel very humiliated by it, frustrated, angry, scared.

Sometimes it feels like a punishment for big dreams, for reaching too far above my circumstances, for thinking I had answers or anything to offer other people. How the so called mighty do fall. And how people like me are supposed to conceal such terribly human frailty, such weakness. I am healer, supposed to be above such vulnerability. I also find myself feeling very alive at times, which is jarring in contrast, but refreshing too. Better feeling alive then dead, than numb then dead.

I’m not getting enough sleep, I wake early every night in a rough place and have to find ways to calm down and stop thinking about death and people who have died. I take great comfort from Rose sleeping beside me, and I bring my friends to mind and tell myself I’m loved. I read books by my little book light in bed, or when the anxiety nausea is bad I get up and slowly pace until my gut un knots. Sometimes I lie on the couch so my tossing won’t wake Rose and I pat a cat, focusing on the feel of her velvet fur, trying to be present. I stop myself calling people I love to check they’re still alive or tell them how much I love them which I’m sure would get very old at 3am.

If I still can’t settle I call Lifeline and tell them I need to hear a friendly voice. Sometimes if it’s dark I stand naked out the back and feel the night on my skin. My heart seems absolutely broken and overwhelmingly afraid and I talk to it soothingly over and over, trying to bring it back from a place of despair and terror. Distract, be present, plan. Don’t think about death. Plan the following day, plan dinner, wonder how friends are going, sit and look at our astonishingly beautiful front garden full of roses and poppies and marvel at the abundance. It will pass, it will pass, it will pass.

Today has been long! I made it into college not feeling good and spent the whole day calming myself down. I’d try to talk to my tutor and start gasping and crying. I tried sitting in the sun, reading, pacing slowly around the building, sipping water, a hot cuppa, a lot of gentle self talk, a phone call to Rose, food, changing all the words I was using about the task I was supposed to be doing, sitting with the very nice friends in my class, looking at other people’s work for inspiration, and all it helped a bit. But the moment I tried to do any work my headspace just crumpled into a big pile of trembling, breathless, unhappiness. So after 6 hours of gentle coaxing I gave up and came home. I’m currently hiding in bed, hanging onto the funny side of being someone who can and has coped with some truly terrible life situations and crises, being unable to make a print at art school – that most luxurious of pursuits that many people would give their right arm to have the opportunity to do! It’s like coping with dragons and being undone by a moth phobia. O.o

It will get better.

I’m still alive

I’m still here.

It’s really hard to fit words to what has been going on.

Things have been really hard. Nothing feels like it makes any sense. Every day I feel like I’ve fallen off the planet. I work hard at it and most days things settle by nightfall. Whatever answers I think I’ve found, whatever peace or acceptance or path forwards, none of them persist into the next day. I fall off the planet again. Whatever worked yesterday or last week or last year doesn’t work today. Nothing makes sense to me. Everything has fragmented and I’m haunted by a terrifying nihilism.

I went camping. I’ve withdrawn from my online world. I eat, I cry, I write, I distract myself, I sit in the garden, walk the dog, cook, read, focus, talk it out, and clamp my mouth over the yawning darkness in me and sit meekly on the edge of the lives of people who are doing okay right now and kind of bask in their warmth. I remind myself that I’m loved, valued, okay, accepted, and deserve to find some peace. I try not to lean on anyone too hard. Other people try to help me feel something, they talk or listen or make suggestions or help me do things. Take me to the beach, or out for ice cream, or share lunch with me or just reach out. I’m being patient because it’s all I’ve got.

I’m not suicidal or starving or self harming or at risk in any of the conventional senses. I’m not sure what’s wrong. I’m anxious and depressed except not exactly. I’ve got ptsd sort of. I’m kind of grieving. I’m going through an existential crisis, possibly. It’s exhaustion, in a way. It’s regression, somewhat. I don’t know. Nothing exactly fits. All of the above. None of the above.

I’m still alive though. I’m having a really rough time. Crying until you throw up rough.

Most days I also find a place where I’m okay – just okay – or even really okay – contented, happy, settled, baffled. I slip into bed between my love and a cat and my skin is thrilled by the soft feel of the blanket and the warmth of cat and skin and I feel nested and safe and loved.

Every bit of perspective I garner is gone the next sleepless morning when nothing can settle me. My vulnerability is overwhelming. I am scared, confused, angry as hell, exhausted, frustrated, and I want my life back. I’m holding onto one college subject by my fingernails. I sold a beautiful painting and felt for the whole rest of the day that everything was going to be okay and I had a place in the world and things would work out. It’s like I’m living a kind of nightmare groundhog day. I spent savings on fuel to go camping because under the stars is my best psych hospital usually and it was great and it was horrible and I think it helped… I got home to sick pets and bad vet bills and sick Rose and I’m currently on antibiotics for a sinus and tooth infection and just had a root canal re-drilled and packed. The garden is glorious. My system feels like it’s been turned inside out and put back together by a 2 year old. Each day I make some sense of things that feel inherently senseless and find a way to live. Each new day I have to find another path. It’s not leaving me much time to actually live, achieve goals, be useful, get my dishes done, enjoy my life, or even connect with people I care about. Reading calms me down, as does watching movies. Both have clear narratives and they are soothing when I feel like I’m freefalling – things are cogent and march towards conclusions.

I’m determined something will change. I will process what I need to process, grieve what I need to grieve. I’ll let go of each tooth and find some humour in my bewildered sadness, let go of my grief about goals like having better health insurance, savings for tooth replacements, a good paying job. I’ll go hunting for more information and approaches to find something that helps. I’m not giving up – I’ve worked so very hard for this life and I want so much to BE here and be able to feel it and connect and be in it. I don’t know what’s gone wrong but I want to come home.

Looking for windows in dark places

Right this very moment in time, I am utterly content. It’s 5am and I’m still not asleep because sleep seems to reset the anxiety and I can’t get bear to let go of this moment just yet. I can breathe. I’m in bed, or rather, I’m on the couch in the loungeroom with Rose sleeping bedside me and the animals all around, because we thought a change of environment night help. It’s dark and quiet and beautiful.

The past 6 weeks or so have been hellish. Stuck in chronic distress all I’ve been able to do is look for windows of time when things are not so bleak and soak up what I can. Rose is on her way up I believe. Not back to her old self yet but certainly her windows of good time are getting bigger and lasting longer. And I think I am too, a bit slower and more bewildered, but starting to come out of it at times. A couple of nights ago Rose sent us to bed alone with journal and pen and candles lit and for several hours we were in no pain at all – gone, like turning off a tap. But that night in sleep it all returned.

Today I had a remarkable conversation with an acting student about the making of art and being centered. She was so grounded herself that just being in her company I felt myself calm and settle into some unreachable peace. When I went back to class the trembling nausea and catch in my throat returned, but the memory of that peace wasn’t entirely gone and all afternoon I cultivated it.

I’ve had the most wonderful evening I’ve had in weeks. Friends came over for dinner and hugs and games. The lovely lady who bought my first print left a beautiful comment on this blog and I felt a tiny flicker of warmth when I read it! Someone asked for a referral locally and I felt a tiny sense of looking forward to getting that professional support referral project up and running for my networks… The joy of that! To feel things again! To care about my work again!

When it’s gone it’s so terribly gone though. A couple of days ago I phoned my mother from bed, so distraught she cancelled her day and came straight over. I spent most of it crying. There’s been many days like that. I coax myself into housework and college and doing my best to function, and I sob inconsolably the rest of the time. Focusing, meditation, conscious breathing, journaling, warm baths, sitting in my garden, distractions, good company, and all the millions of other tools I have to manage tough times seem to do nothing.

Yet, in the presence of someone deeply calm, something in me calms, like a distraught child being taken by the hand and walked through all the dark and scary night back home where it’s safe, and realising on reflection that they weren’t so far lost after all. It’s infuriating. It’s wonderful.

I had a sense today that following my transformations this year, in some ways I’m exactly the same highly strung, passionate, intense persons I’ve always been. But in others I am totally different – approaches that used to nurture me now do nothing, while I find myself deeply moved by approaches that have always been useless to me. Something has changed, and I don’t know it or understand it very well yet. I have the sense of myself – my body and mind, as a new kind of instrument I don’t yet know how to play or care for, don’t yet know how to hear the warning signs of problems, or nurture to get the best music from. It’s been a harsh lesson, like leaving a guitar out in the rain! I’ll learn. I’ll do anything I have to do.

Right now I’m going to surrender to sleep, and try to accept with grace the possibility that tomorrow I’ll be a trembling overwhelmed shadow of myself again. I can feel the lump in my throat, the bite of nausea. It was real, I did find a window, and I will find more. I’m going away shortly, camping with my sister in the hopes that this time my night under the stars will be helpful and reset some of this anguish. I hope the dawn is near for me, I do. I am grateful to be reminded of the humbling sweetness of those who have very little being kind – how few of us who live privileged lives ever get to feel that? It flattens those hierarchies of important people so quickly, stings but only our pride. You can’t look at people the same way when last week you were so broken and they so kind. They become your equals, even your teachers and mentors. Always learning, always something to learn.

Wish me luck.

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.

image

image

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.

image

image

Happy three years to Rose and I

image

Sometimes you celebrate each other from the tops of mountains, when things are going your way and the whole world glows with possibility. The wells are full to over flowing, the larder is stocked, the roads are wide and smooth, the sun turns the world to gold. Love is easy, forgiveness is easy, kindness is easy. All things are in abundance.

Sometimes the path is narrow, twisted, bewildering, faltering into bogs and falling over cliffs.

I love her because even when I’m scared I’m not scared of her.

I love her because even when she hates herself she’s gentle and tender with me.
I love her because when we have very little, what we have she shares with me.

At night at the moment we both toss in the dark, dream-wracked and afraid. Sleeping in shifts between storms of tears, a broken voice crying out, the shudder of nightmares under skin. We bump along like two boats in black water and a moonless night, kissing hulls to be sure there’s someone still there. Over and over we turn to each other, hands reach like a bridge over the gulf, feet tangle like vines around each other, lips touch shoulders and we murmur soothing sounds or sing snatches of lullabies to each other. Stroking fevered faces, calming the hair back against arms, the arched back to rest again into soft bedding. “Love, love” we croon like doves, the inarticulate language of night; sharp cries like gulls, and the hushing of mothers half sleeping, voices a deep soft purr in the chest.

Adventures are tricky things. Reflected on from comfort, the sharp edges dull a little, the black nights turn pearl grey in memory. Here in the moment it’s stark with presence, bright as a papercut, a piece of glass in the shoe. It’s not called an adventure if everything turns out according to plan, if there’s no dark nights, no fears to conquer, no cost.

In the full glory of a spring day, sunlight on her bronze skin, her mouth open with laughter, her eyes full of light, she is beautiful. In the dark hours of the soul’s midnight, her body painted with pain, eyes closed against the burning memories, lips drawn back hard against teeth, she is beautiful. It’s a different kind of love that grows here, threadbare, harsher, there’s pain woven through it, and bone for strength.

She holds me in the shadows, sings peace to fall like rain down upon us both. I have seen the moon bright and full, and dark and empty. I know her in triumph and tragedy. There’s still love, in each place, the thing and the shadow of the thing. The rainbow and the rock beneath.

Places to rest

It’s 5am. I can’t sleep. I have terrible vertigo and hives all over my body. I’ve been reading blog posts by Jenny Lawson and Will Wheaton about depression and anxiety and I’m curled up in tears and feeling less crushing alone in my black pit than I have in days. I’m really, really tired. I’ve been trying so hard to find a way through this godawful smog in my head, looking for hope like a starving person, doing my best to counter the black rain of failure and despair, yearning with everything in me to be able to feel the kindness and love people are giving me. Sometimes I can, for an hour or two. Often I can’t. I want to so badly, I do everything I can to hear and receive and take in and believe, but I’m on the other side of a wall. I don’t mean to be. I don’t want to be. I promise I’m trying, but it’s bigger than me. All the want in the world isn’t making it go away.

Reading tears in rain by Will Wheaton, I felt a sense of relief. That feeling like a failure and being a failure are not the same thing. That people who have successful careers also feel the crushing insecurity I’m struggling with. I’ve collected my box of art prints for the walkathon on Sunday and I think they’re beautiful, and at the same time there’s a kind of violent rejection of them, bile in my throat, fury and exposure and loathing and a desire to destroy them, to burn down all the tiny dreams that are still breaking my heart, still leaving me vulnerable to this feeling of failure, this sense of not ever being good enough. Quivering with distress I step back from them and try to breathe.

Yesterday morning I had terrible vertigo, I was crying out and holding onto the bed because the room was flipping around me like a car being tumbled down a cliff. Rose got me a vomit bag and cold water to sip, then held me tight and sang to be until I went back to sleep.

Last night I filled her water bottle and got her a vomit bag when the flashbacks got bad, held her close and sang to her until she fell asleep. Nights are hardest for her, mornings for me. We’re limping along together. How much I love her.

Two days ago we took a friends kids to the show together and it was a beautiful day, all day. We spent the whole day on toddler time, moving gently, lots of rest, lots of snacks. We got stuck with a half hour wait for the train at the end of the night and each took a girl to sing her to sleep. Rose with the 7 year old cuddled up and dozing under her arm, me with the little one in a sling pacing slowly around them. Each of us looking at the other with stars in our eyes. A quiet place, in the night between trains. No panic attacks and hardly any flashbacks that day.

I can’t beat it from inside. I watch for the windows when it’s less and do what I can then, take in what I can. I’m so tired, and so tired of feeling guilty and responsible. It’s a bit of cruel joke to feel so awful and feel worse about failing to stop myself feeling so awful. I don’t think I’m going to make this better, just breathe inside it, don’t destroy anything, and wait to heal. I’ll bloom again.

It’s not my fault, right? I don’t think it’s my fault. I didn’t mean it. I’d stop if I could. I’d make it all better if I could. I’m trying. And trying to find places I can rest from all the trying.

Jude Blooms

image

Jude, the rose that Rose and I bought on the day of our engagement, has bloomed. He’s so beautiful.

We’re still here. It’s been a long week. I think the downward spiral has arrested. We spent Wednesday night in the ER because Rose was suffering chest pain – almost certainly muscle strain because of her extremely painful flashbacks, but you can never be too careful with sudden chest pain so in we went and they kept us all night doing tests. She got the all clear at 7am. I slept for a couple of hours in the van out the front of the hospital while she napped in a dark corner of the ward.

We’re breaking the new, devastating patterns, with help. Rose has a new trauma therapist on board, I’ve been reading up on Focusing and holding onto my people’s belief in me as a decent person. There are still very hard hours in every day, but at no point in the past two days did I feel like I was dying. I managed a full day of college today, and started a new oil painting tonight, despite some pretty intense anxiety and stress. Art as business is not doing kind things to my head. Last night I went for a late night walk with Zoe and found the world shifted and poetry came back to me.

Dropping the ball like this means a juggling act to keep up with those responsibilities I haven’t dropped. I’ve got major preparation work to do for a stall in a week and I’m worried about it. I am still giving talks here and there – they’re stressful but also like small lifelines for me currently – feeling of use is the strongest antidote to feeling like I’m dying.

We’re limping on together. When she’s happy, she shines. I love her to bits.

Holding the Fort

Rose is rough, I am rough. I’m holding the fort, for myself and with her too. Just holding on.

We’re swimming in trauma reactions and broken bits of our hearts. Deep wounds and deep grief. PTSD is incredibly hard, very unfair. It exposes when we most need protecting, makes us tremble with fear when we most need comforting, turns the world dark when we most need the light.

I’m trying to find a way through the stories – that this is real but also that the fear it brings with it – that this is permanent, is not real. There’s such a tangled web of truths and lies and fears it’s hard to find a way through. I find myself falling with relief back into the stories where mental illness is compared with physical – for all the problems with those analogies they also fit and give some shape to the pain we’re in, some way to make room for the suffering and argue for understanding. My poor love is devastated with flashbacks and I find myself debating whether I’d say ptsd or epileptic fit if I needed to explain why we needed help in public to a stranger… It’s debilitating and I can’t navigate the complexities of what has happened to us any more, I’m back to needing the basics of something I can fit in a sentence, something I can scrape clear of the rot and find a place to stand on. Illness. Injury. Whatever. A real thing, a powerful thing, that wishing or trying hard does not make go away. We are dealing with a thing that is bigger than us, and unfair, and very hard, and we are doing it the best we can and each day hoping tomorrow may be better.

And yet, as I drove up the freeway today, looking for a way to pass an hour without the darkness obliterating us both, I felt that knot of pain in me, the thing in my throat I can’t breath around, the indefinable thing that is and is not pain or fear or grief or any thing I can put a word to… just some kind of deep hurt that I can only recoil from – something unbearable. Which is bizarre to me, because I’ve been through so much that was unbearable. So much worse than this! And alone, and in agony, without hope – I’ve been here before and yet this is a new hell, unfamiliar, and I’m without assurance that I’ll come through it. I can’t feel that.

I wondered for a moment what it would feel like if I stopped doing all this to try and ‘get better’ or feel better, if I stopped the self care, the patience, the determination, all the ways I was approaching this pain, and let it be instead. Instead, in fact, made it welcome. And the knot came undone, in my throat. I could breathe for a moment, I was in pain but it wasn’t beyond bearing any more. It just hurt. I didn’t have to run from it or bind it up or try to heal it. I could just be with it. Recovery never looks the way people talk about it. Tonight, I’m feeling the black rain falling under my skin. I’m patient and mostly I’m holding the fort. Some moments, I slip into the slime and under the water I can hear the sound of my dreams dying.

Some moments I read blog posts like Celebrating my blog from earlier this year, and come across lines like “I’m actually starting to take some positive feedback on board for the first time since I was a child. I can see clearly what I’ve been doing all these years with this work.” and the contrast is so great it’s almost unbearable. How did I lose this? How completely I have lost it. Only the memories haunt me.

I have spoken with a few close friends lately about all the losses I’ve faced in the past few months, particularly around my business. So many wonderful things have been cancelled or rescheduled or not come to pass, none of which I can really talk about. I thought I was ready, and to the sound of enthusiasm and support and a sense of community, I’ve jumped. I tried to fly and instead I’ve fallen. Each loss or dead end or deferred hope alone was manageable, but my world has been full of them lately, and I simply can’t buffer them, not in my situation. Everything has an impact in my world, financially, and on hope and energy. I rolled with the punches for the first few, but somewhere back 10 losses ago, I lost key things I need to keep going and didn’t realise yet until there was no more world beneath my feet and I was falling into a dark place.

I am trying to send cards or letters to anyone who has supported me and I have managed one so far, which I nearly threw up with stress to do. So vulnerable, nerves scraped raw and heart broken. I simply do not understand why anyone would support me in any way, let alone a stranger or near stranger send me money. I want to understand it but right now I simply can’t process that what I’ve done has helped anyone or that people might wish to be as madly generous to me as at times I’ve been to others. It’s a simple equation I know, but I can’t make it come out right in my mind. I hope it will again.

I was talking to someone kind the other day and when I listed all the losses, one beside the other, of the past few months, they were shocked. “Deep grief” they said to me. “Of course you are worn out, that’s such a lot to deal with, and such a shock when things seemed to be going so well!” Shock. Could that be the reason the sun seems dark? The reason that people telling me, over and over, that I’m okay, that I count, that I’m enough, and that I’ve done some good in the world simply doesn’t make sense to me? Is this how shock feels on the inside?

“Stop asking what’s wrong with you!” one friend has said to me – “of course you’re struggling, it’s been such a hard year! You can’t take hits like that and not need a break.” And I think of life cycles and cycles of energy and of day and night and life and death and needing to stop and retreat and weep sometimes to find that joy in life again. I think of going on without stopping through one loss and then the next and the one after, still smiling and still hoping and still wringing hope from my heart while the politeness became and mask that slipped and gouged into me and my heart choked.

“Deep grief” I’ve written on my wrist in permanent marker, to remind me – this is why it hurts so much. There’s a real reason, even if it doesn’t make sense in my head. I’m not just broken or crazy or doomed. It will heal. I will see the light again. And this thing that feels unbearable, I’ll find a way to live with, like I have all the others, right. Right?

For now, holding the fort.

Our own personal hells

Dear lord. Sometimes life makes sense and feels manageable and there are plans and directions and a sense of hope. And sometimes life is just… white water rafting, when you thought you were going hiking. When you packed for a picnic after a bush walk up a hill. And brought your favourite collection of sharp, spiky implements, your best boots, and certainly no paddle.

Guess I’m still human after all, spiritual awakening and all. At the moment I wake up many times in the night, full of deep dread and horror about very small unimportant matters. The feelings are nebulous, intense, and difficult even to name. It’s taken me a week to begin to be able to discern each flavour independently – there’s guilt, there’s failure, there’s grief… Often it’s just pain, a kind of bleak anguish that’s unbearable. It can’t be sat with, can’t be visualised away, can’t be un-fused from. I took myself down the beach overnight, and instead of finding peace I sat alone in my van, arms flung wide, begging for help, for peace, for respite, before falling into brief exhausted sleep, only to wake in agony again. The sudden decent, the depth of it all caught me by surprise and left me reeling.

Each morning I wake feeling something I can’t really name. It’s not self destructive, I don’t feel the urge to self harm, I don’t feel suicidal, exactly. It’s unfamiliar and horrifying. The only way I can describe it is feeling like I’m dying. I have no sense of hope or a future at all. My throat is half closed and I can’t breathe easily. If I manage to meditate or focus or in any way create some room between myself and the feelings, I relax and immediately go back to sleep. Then I wake 20 minutes or so later, intensely distressed again. It’s demoralising and exhausting.

I’ve been reaching out to people. The only thing I’m finding helpful at the moment is the kindness of my tribe. I feel lost, and I can’t see myself clearly any more. Other people holding hope for me, telling me that I am not worthless, that I do contribute to the world or their world in some way, are holding a mirror in which I do not recognise myself but I can at least acknowledge that this might be me, even if I can’t feel any of it right now.

It’s a kind of hell. I’ve appreciated touching base with others I know go through hells like this. I’m finding that I come in and out of it. I can talk about it quite calmly now. Tomorrow morning is likely to be another world entirely. In it I feel stripped, vulnerable, defenceless, frightened.

Rose is in a hell of her own. Flashbacks can be devastating. Hers can be severe and completely overwhelming. We’re slowly finding what helps, but it’s all from scratch. Nothing that’s previously helped is working. So far company is better than being alone in them. Children or animals are deeply grounding and the best approach by far. I can hold her hand and sometimes talk her through it or sing to her. A wet cold cloth on her face and neck helps. Sometimes weight is grounding – I cuddle her or Zoe lies on her. Sometimes a dog lick will break her straight out of it. None of the other grounding techniques she usually finds helpful are working. It’s a slow trial and error kind of process.

One of the things I love about her so much is that even when she’s in hell, she’s kind. I was a wreck this morning and so was she. But she still got up with me, cut me up veggies for lunch, and dropped me at the tram. Our night was bookended by her flashbacks until 1.30am, and my unique brand of existential misery at 5am. There were still cuddles and gentleness, reading Harry Potter to each other, back rubs and sympathy. I’m lucky and I know I’m lucky. ❤

So, I’m trying to clear the decks as much as I can without actually destroying any of my projects. I’ve talked myself out of closing down my business and the networks for now. I’ve wrestled with the mess that thinking of my art as a business creates in my head. I’ve failed and fallen over and messed up most of my attempts to follow through with my goals over the past couple of weeks. I’ve failed to finish an essay and had to withdraw from another class at college. I’ve answered a few emails that I could open and read and still breathe while replying to. I’ve cried in the toilets at college when hearing about a couple of people with DID who killed themselves. I’ve reached out to people who are being kind, sending messages of support or telling me how they see me, see my work or believe that I have a place in the world, who recognise their own dark hours and don’t judge me or think less of me. I’ve been grabbing hold of anything that resonates, reading about focusing, coherence therapy, moving towards the pain, and just holding on, minute by minute, waiting for something to change.

I found a sentence that I loved recently – being in the land beyond the maps. I’ve felt like through so much of my life. Multiplicity, psychosis, my art, grieving Tamlorn and finding myself in an experience of profound awakening… If you walk the paths you will end up where all the others who walked those paths went. Paths are what we crave most when we feel lost. The certainty of hope. We’ll trade in almost anything for it, and bind ourselves into lives that don’t fit us at all. What’s much harder but much more likely to take us somewhere amazing is putting together the skills and tools and resources we need to make our own path and follow our own stars.

But hell, it’s not always easy. I guess one of the things I’ve been doing in all this pain is taking up my rightful place in my tribe. I’m not some kind of guru to follow. I’m not a shrink. Even the idea of ‘peer workers’ who have recovered and have some kind of wisdom to pass on doesn’t feel real comfortable. I don’t have the answers and I can’t take away anyone’s pain. Sometimes I help people and sometimes I need help, and that help is mostly in the form of simple kindness and connection. I’m as human and fallible and full of doubt and uncertainty as the next person. I know a lot about surviving hard times and sometimes that’s brilliant and sometimes it means almost nothing.

Thank you, those of you who have reached out. You who share your own hard times honestly. You who – for reasons I can’t really fathom at the moment – send money or support me in some way. Thanks so much for being part of my world and not hating me when I lose my way. You help me not hate me too. I’m glad to not be alone.

Holding hope

Some days I give hope and some days I gratefully receive it.

Rose and I are having a tough time. Flashbacks, panic attacks and terrible depression are our normal right now. We spent an hour on the couch today weeping over Tamlorn’s ashes.

Kindness and care from our loved ones helps. When I can’t feel hope any more, they hold it for me.

Even on the days when it feels like we have so little to give each other, we are kind at least. It’s not everything, but it’s not nothing. Even on a day as black as today, we have small victories to celebrate.

Learning the cycle

So I’m noticing a cycle. I soar into something wonderful – a new capacity or skill or realisation. Life is wonderful, almost ecstatic. Then I find myself grounding and trying to integrate the new experience with my life and ideas and past. It’s messy and complex. Then something glitches badly and I find myself way down in the swamp.

Messy turns to painful. I hurt and cry and become anxious and overwhelmed. No matter how many times I’ve gone into and come out of the swamp, a key feature is that at some stage I will lose hope, lose all sense of competence, lose any guiding light. In that place, where my vulnerability is total and the darkness around me absolute, I will discover the block. Forced into confronting it, I will find a name for it and begin to explore it, deeply afraid and very resentful.  Once I’ve found this block, I will be released from the swamp. In understanding the block I am freed from it and come soaring back into flight again.

It’s a cycle of learning: not an illness but an emotional circle, of learning and doubt and reflection that repeats and at each stage offers me an opportunity to confront something key and learn. With support and with time for honest reflection I am learning how to tune in and listen more quickly to myself, and my writing and journals and poems help me tremendously, become paper mirrors that help me see me. Focusing skills help too.

If I don’t listen or tune in and I don’t find the block, at a certain point I’m come out of the swamp anyway, but I’ll go back in shortly, over and over again in the most exhausting and demoralising spiral. If I find the block and come out of the swamp but then stop tuning in to myself, I’ll try and push myself through the block instead of negotiating it and I’ll make a mess of myself, driving myself to exhaustion. If I keep listening I’ll find out how to unpick the mess and go forward in a way that suits us and gives us freedom.

Adult learning. It’s a fascinating field! Emotionally, it’s painful and messy. But when I see it coming and get out of the way and understand that by tuning in it will move along faster, I can see how it works and why its needed, and how people can get stuck. Yesterday we figured out a block and settled. Today, I feel fantastic again. I’m glowing with health and enthusiasm and enjoying my work again. So maybe I need a note on the bedroom wall that says – “when you go down, listen well, and you will come up again. It will be okay, you have been here before and you will be back again.”

People don’t like cycles much, we tend to pathologise them. But cycles are intrinsic to nature, seasons, day and night, even our own cycles of sleep and wakefulness. Rhythms and tides are how living things work. And all cycles have their winter or their dark night in them. It doesn’t have to mean anything is wrong. Some knowledge we need in life is bright, beautiful, glowing and sitting on our lips like honey. Some is dark, painful, angry, wounded, and spilling from our mouth like blood. Some things we learn in ecstacy and some in anguish. Some things we dress in our finest clothes for and some things we must be naked to embrace. All of it can be life giving, can be part of a whole, deeply felt life.

Love

image

It’s been a long week. I’m very tired and feeling the bite of extra work from the move… and extra tiredness from all the emotional things going on. I’m feeling a bit run down, mouth ulcers and a headache. I’m hanging out in bed this morning with Zoe.

I keep trying to write blog posts but my mind isn’t quite clear enough to get them structured and polished and out in an hour the way I usually can. That’s okay. Maybe tomorrow, maybe next week.

Last night we had the first meet of the people interested in being part of a community around homelessness in SA. I was excited about it, but got compressed with admin at the end of my day, then had several small emotional shocks, and by the time we’d made dinner and sat down to talk I was feeling very discouraged. So the catch up turned into something very different from what I had planned.

We talked about the challenges of trying to be part of something new, of the disillusionment, the old wounds from every other project we’ve been involved in that went bad, the anxiety that too much would be asked of us, the confusion about how to best meet needs, the need for bigger picture thinking to link our little concern back to huge human rights issues of poverty and so on, the sense of being overwhelmed by a crisis we can’t fix, of a deep discomfort with the usual way of doing these things – board meetings, roles, subcommittees. I cried. We laughed. We shared and connected as people. From the mess, confidence emerged, clarity emerged, a path forwards, a sense of equality and team and closeness. I reflected and captured the themes, the way I’ve just been taught to in the facilitator training, but not detached: with tears on my face. As one of them. My friends are so beautiful.

And I came away that night feeling deeply moved. Humbled. Part of me that observed the growth, the shift from hopelessness to calm hope, was looking at why it came together, as we always do. What are the principles, the values, that underpin it? Why did it work and how can I capture that for other people to learn and experience, for inclusion in my model about services with heart? For the first time I felt a sinking sense of futility. Maybe it’s simply not possible to capture such an experience in a manual or model. Being human is so… messy, unpredictable, beautiful, how can it be fitted or adequately described?

Then a sense of peace came over me, to let it be what it was and drink from it and rest in it and accept that I cannot count the stars. There will be tomorrow night for star gazing, and the night after, and after that. Right now to accept the gift of a group space that was human and safe and healing.

Something beautiful happened after they left. Our researcher part; brilliant, detached, driven, woke up. She sat trembling with Rose and said it was like having a heart put in her chest for the first time. She could feel our young ones inside her, could hear them as a kind of distant chatter. She inhabited the body and found emotions spilling over. She held hands with Rose, feeling every sensation and feeling the joy in it, to be able to feel touch, the yearning for the warmth of another. She has never lived in her body before, never eaten before, never felt a desire for human contact, never felt strong emotions, never been moved to poetry.

She felt like she had woken up. Every sensation was strong and clear but not raw or overwhelming. She felt like the tin man who had been given a heart, or found it rather, inexplicably alive and red and beating in her chest. Rose was a good midwife for what was being born, attentive and attuned. Rose suggested food to a part who never eats, no matter how many days she’s out for. She turned away from chocolate in disgust but accepted a mandarin.

Peeling the leathery skin and smelling the sweet pungent oils on her fingers was magic. It tasted sweet and mild and watery, bursting with juice in her mouth. She ate every segment, slowly, tasting everything. Then she lay her head on Rose’s breast and listened to her heart beating. Rose spoke with her gently.

She asked Rose if she was part of this family too, if this was her home, her body, if she’d done enough to deserve it.
And she listened to Rose’s heart beating, her head going gently up and down with the rhythm of Rose’s breathing. She thought to herself that Rose was a sea and she was a tiny boat bobbing with the waves, and felt delight in thinking this, in feeling a poem.

And then we slept, deeply. Today we’re going to move slowly, listen to soft music, work on our tax admin. Life is good when nothing turns out how you planned or expected, when you’re not in control and start to find that’s actually better, richer, stranger, deeper. There’s a lot of love in my little house, in my world, in my life. Something very beautiful is happening here.

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

Services with Heart: Mental Health System Reform

So, at the recent Service Integration Conference in Pt Lincoln, I was explaining what I do and finding that there was great enthusiasm for my networks. Someone asked me if I had written my model down yet. That night I woke after 2 hours sleep with a lot of the model in my head wanting to be written. About 8 hours of writing later I had the first draft. This is not exactly what I was expecting to come from the conference with! I’ve shown it to a few people and received a really warm, and also valuably critical response. I also have a friend and mentor on board who thinks ‘bigger picture’ like me and is keen to develop the model with me. So that’s becoming a new key project I’m working on. Here’s a little more about it:

Services with Heart

I’m developing a model of service design, delivery, and export, with a particular emphasis upon mental health system reform but broader applicability to business structures. The focus is on creating systems that are ethical, humane, and sustainable. It’s informed by various areas of learning including Systems Theory, Fundamental Human Needs, The Peter Principle/Pyramid, the WHO model of mental health service delivery, Human Rights, Healthy Multiplicity/Pluralism, and Culture as a primary means of idea transmission. It is intended to be scalable, adaptive, self-exporting, capable of being dismantled to smaller components, and testable. I’ve written the first draft which is Phase 1.

I’m currently in Phase 2: the research and development phase, gathering data on the value and issues with existing models, with a particular focus on causes of the common declines of useful and heartfelt services – we are good at starting valuable services but there’s a significant issue in the way they grow and key areas of common entropy that threaten the continued existence of the service, or their continued usefulness and quality of service. I use my existing networks as living organisms that both test and inform the model in practice. I’m currently gathering support for a stretch of Qualitative research through interviews with people who use or work (or have used or have worked) in services.

Phase 3

  • making sense of this data and building draft 2 of the written model.

Phase 4

  • constructing several pilot programs in different high needs areas to research and evaluate the model in action.

Phase 5

  • reflecting on this evaluation and using it to adapt the model.

Phase 6

  • developing at least two programs in consultation with independent, existing organisations, one in development and one at re-evaluation of the existing service.

Phase 7

  • researching and evaluating the model’s exporting capacity in these projects.

Phase 8

  • publication.

I expect this plan will also change and adapt through the model development! 🙂 I’m hoping the end result will be a useful way of creating systems and organisations that function as much healthier organisms with much more intelligent feedback structures, and far better cultures in which people can learn, work, and receive support.

How you can help:

  • Support Me emotionally, practically, or via donations
  • Respond to Call-outs when I am looking for people to interview
  • Help me develop qualitative interview skills
  • Look for funding or study opportunities – this could be a Masters or PhD project in Public Health but I have few contacts in the academic world
  • Take on a role in any of my Networks to free up my time

Dreaming Big

So much is happening…

That’s been the observation for weeks now, and nothing is letting up, gathering steam is a better analogy.

The trip away to Whyalla and Pt Lincoln was exhausting and amazing. I learned so much, so fast and scrambled to keep hold of it and keep my head together. I took a big risk going there, reaching beyond my reach and needing a lot of help.

And I got it. I understood so much more about how a tribe works. I feel so grateful and appreciative – to everyone who helped me. Thankyou deeply. It’s so important to me not to be swept away but to stop and acknowledge you all. You believe in me and what I’m doing and support me. Thank you! I will be saying thank you individually too – but thank you publicly! I can’t do this without you all, you are helping me to get a message of love into mental health, to speak out that people with multiplicity are real people, not stereotypes, and that art is essential for life.

I had experiences that I would call ‘psychotic’ except they were so beautiful and so peaceful and so lovely it would be like calling love making ‘rape’. I sat by the water and watched the dolphins and wept. I felt so alive and so connected it was onerwhelming. The sky was so beautiful I was falling into it. An inner eye opened and was so dazzled by the world I’ve had to let it partly close again. And a model of mental health reform turned up in my head. I’ve filled a notebook with it. I had the most amazing conversations, feeling like I was really out of my own mazed mind for the first time, able to see people clearly – not just other people like me, in the clarity of intensity and rawness, but all people. Every conversation left me feeling that I had been given profound gifts of insight – not me but everyone -, that everywhere people were throwing away the most incredible observations about the world and none of us listening to each other. I don’t have words for what I’m going through but the closest I can find is ‘spiritual awakening’, or would be if my system felt more universal towards any kind of spirituality. I feel… transformed.

I got home to chaos. Both inboxes overflowing, hundreds of urgent tasks needing doing, no structure or priorities, just an avalanche of information and opportunities and contacts. I threw myself into it and got swamped immediately. The first day I worked for 13 hours to just start listing all the things that needed doing. My mind fried, like an abuse victim near the abuser, all my thoughts tangled into knots. Feelings of deep shame and overwhelming anxiety welled up. My productivity crashed, it would take 3 hours to write and send an email that was coherent. Most of the things I had to do were ‘scary’ things, out of my experience or comfort zone. Things that took great courage, or needed me to change gears to sympathetically listen. I could tell I was so overwhelmed that even the simple things were becoming impossibly difficult.

The more inconceivable it is that you take time off, the more essential it is.

After two intense burn out days of doing my head in, I went back to the new plan and adapted myself to Rose’s work hours.

It was hard and I didn’t get it entirely right but after a couple of days working sensible hours my head was clearing and I was able to think better.

I was still bleeding out though, every hour taking me further away from feeling centred, grounded, calm, feet firmly planted. Rose could feel it too, that wildness and destabilising anxiety in me. I was losing the ability to be in sync with her longer than a couple of hours. I’d find a few hours of something different and connect, but each time I was coming back to a gradual slide down a steep hill. So we packed me up for a night at the beach.

At 3am, alone in the dark (isn’t life strange, I used to hate that and feel hurt by it and now I drive two hours into the night to find it – I’m reminded of a couple where one always complained about the other snoring and now they’re dead and gone, and the other partner can’t sleep without the sound of snoring, the quiet of the house too much to bear) I find the heart of my terror – a message from my anxiety that I’ve too many demands on my time and need to push some things back to next year. It’s a hard message to hear, but as soon as I accept it – not problem solve it, not resolve it, just listen and accept it, the whirling franticness calms and the ‘click’ I listen for when I’m out in the wild places, out under the stars, happens. Choosing between my passions and projects, for a multiple, is incredibly painful. But just recognising this message brings peace. I spend a day listening closely to my needs, tuning back in to the small voice of my soul.

I come home deeply centred again.

Into the maelstrom! My inbox is overflowing my desk, the emails keep piling up, letters from welfare that require urgent attention, I still need to do my tax. And family in trouble needing help. Why bother with all that connectedness and calm, I asked myself, look how quickly I lose it! I gathered all my lists of things that need doing back into one list. Every time I find a new task I add it. It’s several pages long, over half are urgent or beyond urgent, seriously overdue. I tackle an hour of rapid housework and get down to it.

I take half the morning sorting out my enrolment to college. Half the information I’ve been given is, as usual, plain wrong. One of my term long classes turns out to be actually be a semester long class, and several hours more commitment each week than I’d been told as well, making my workload much higher for this year than I’d planned. But it’s a rare, special, elective subject about a topic I’m absolutely passionate about and as much as I’m overwhelmed about doing it, I’m desperately trying to hold onto it.

I gather 10 of the other most desperate admin from my master list and work on them in small doses over the day, adding in little notes and messages here and there to friends so I haven’t dropped out of conversations completely. There’s a great analogy about to do lists, how every list has at least one thing on it that you’d practically rather eat a frog than deal with, and that if you tackle this thing first, the rest of the list will be much clearer and easier. That’s my take on it anyway. My short list is entirely composed of frog. Everything on it is stressful and challenging and makes my heart race and me feel sick.

I get three done, run off and tell Rose – I’ve eaten another frog! Then go and cook food. When there’s crisis is important to have good food easily accessible. I make carrot and ginger soup with half the $2 bag of sweet baby carrots we bought from the market together. The house is clean – we are mastering how to use systems and routines together! I pick the list back up in places over the rest of my day, in between helping family pack and move. At 11pm, Rose is exhausted and wants to go to bed but is sitting near me in solidarity as I tremble and curse my way through a few more frogs. I ‘hear’ a sense of being able to engage with another box of frogs from my main list, which surprises me, so I set to it and tackle changing gears to genuinely respond to the DI email inbox from the website – a task almost unbearably daunting since I discovered I’d missed an email from May and felt so bad about that I’d almost rather set the computer on fire and leave the country than reply to it.

I eat a lot of frogs. Rose is very encouraging. After each frog she tries to celebrate but I still feel so sick and overwhelmed I can’t breathe. Late at night, I get the last, big frog off that list and everything transforms. I’m giddy with happiness. The rest of the list is suddenly manageable! My life is suddenly manageable. The family crisis is manageable. My projects are exciting again! I’m looking forward to my week! I can think straight, can make plans again. Rose and I plan a sleep in this morning, a lazy start to the day in pjs, and waffles for breakfast. Everything feels wonderful again.

So much is happening…

I’m reading a book called Wishcraft by Barbara Sher, recommended to me by the awesome artist behind Outspiral, and it’s so relevant and brilliant I cry in nearly every page. I have been doing a lot of looking and listening lately – who else is doing what I’m doing, in some way? How did they pull it off? This book was a wonderful suggestion.

The most wonderful part of it is the author normalising this roller coaster for me. It’s not me! It’s not me being ‘mentally ill’, easy as that assessment is to make. It’s a trauma history and a lot of years of being alone, up against me seeking my big dreams and finding my place in the world. It looks messy because these things are very hard to do – to dream something wonderful and pursue it is very scary and wonderful and you need a good support system more than you need personal attributes like confidence, she says. I love her. It makes sense and it’s all gelling in my mind. It’s possible! I’m excited.

If, ten years ago, some kind soul had given me hard information on how to turn my dreams into realities, instead of just assuring me blandly that it could be done, it would have saved me an incredible amount of time and anguish. As long as I kept trying to believe in myself and reform all my bad habits, I kept crashing – and blaming myself. It wasn’t until I gave up on every fixing me and tried to improvise a set of aids that would work for me anyway… that I stumbled on the real secret behind the scenes… it’s not superhero genes and a jaw of steel, like the myths say. It’s something much simpler. It’s know-how and support.

I’m going to keep reading it and if anyone else wants to read it too, we could discuss it together as a kind of book club. 😀

This is a good guide to help me find my way through all the possibilities and opportunities suddenly open to me. I’m putting a lot of thought into the kinds of support I need, and I’ve actually published a rough draft. It’s only a work in progress as I build a better framework around me, but it’s a start and I’ll keep working on it and clarifying it as I learn more. I’ve actually replaced my Donate page with a Support Me page because I’ve realised that there are many ways to support me and I don’t like to make it sound like money is the only thing, it’s helpful but it’s only one way. Check it out, I’d welcome any feedback. 🙂

Rose has kindly explained to me that people have no idea how to support me most of the time, and no idea what my big dreams are or where I’m heading, and that as I’m a bigger picture person which is not that common, and I also share a lot of my strong feelings through this process, which is likewise not common, there’s a lot of anxiety out there around what I’m trying to do. That makes sense to me. I’d noticed it in the general feel of things – the more I’ve been winding up and making bigger plans, there’s been this sense of an indrawn breath around me – what are you doing? Are you nuts? So I want to start to find ways to communicate more, and more clearly, what I’m doing and where this is going and how people can be involved if they want to – if they share the dream too.

Life is amazing. 🙂

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.

Reforming the Mental Health System

I wrote this while away in Port Lincoln caravan park after a Mental Health conference on system reform and service integration.

White collar communities have a lot to learn about being human and connection and having networks. Blue collar communities and street families have a lot to teach us. Yes, they have issues of their own, particularly violence, but they do not have the same issues. They are, in a sense, complementary. We can learn from each other.

I’m here in a caravan park and there are children playing on bikes. Couples walk on the beach. People give each other directions. The woman at the roadhouse is bringing me some vegetables from her home so I can eat them for dinner. The lady in reception is collecting for a raffle for her injured friend. I don’t lock the van when I go to the amenities block. I don’t pack away the stove when I go to sleep. People look out for each other. I’m at much less risk of violence here than the social workers sitting by the door, with their panic button in case their angry, alienated clients lash out. No one has anyone trapped in a room.

We talk about bringing the Recovery Model to services and I think there’s merit to that idea. But if we’re going to be ethical and sincere about this, we need to preserve the power balance of the true model. That is, each service, each organisation, each individual service provider should be free to walk away. We cannot make them recovery, and nor should we. It does them the same violence they do to patients when they think they know best and try to force recovery on people.

The truth is, we are not so different. As blind as they have been to the abuses of patients/consumers, and as unthinking as they have been in wielding the vast power we see so clearly and they are so unaware of – they are a mirror to us.

We must be different.

We must support and liberate them, so they learn to support and liberate consumers. We must trust they are doing their best. We must listen and learn the causes of their pain and bizarre behaviour. We must learn to see the methods in their madness. We must love them deeply, and help them to see the possibilities for themselves they cannot see right now. We must hold hope for them when they lose it. We must let them be free to make mistakes, and be gracious when they do, and help them to learn from them.

It is not easy.

But, we are asking this from them – this courage, this fierce love, this walk into a strange, unknown, new world. How can we ask them for things we refuse to do ourselves? How can they give what they do not have? Model what they have not experienced? How can we demand freedom from those who are likewise yolked?

Love is the only answer.

Poem: The Dying Star

Written one night camped by the ocean at the recent conference in Pt Lincoln. It was an incredible time.

Out
in the bay
The ocean slaps at my feet
Far beyond the dark water
A single star falls
So bright,
So brief
Fading out before it reached the water
And I wept
On the far shore
I wept

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

I don’t know better than you

I don’t know better than you how to live your life.

I don’t know better than people I sometimes care for when they’re unwell.

I don’t know better than the rest of my own system. I couldn’t be any of my other parts better than they are.

In fact, my conscious or rational mind doesn’t know better than the rest of my mind.

If I tried to take over your life, on the basis that I know better than you how to run it and that I’d do a better job, there are two predictable outcomes – you would fight me every step of the way, overtly or covertly, desperately trying to preserve your own freedom and dignity. You would fight me even if what I trying to make you do WAS good for you, or felt helpful or needed, or would actually make your life better. Because those needs are less important than the need to be in control of your own life. It is a fundamental human need to be autonomous. The freedom to choose, even if our choices are terribly flawed. This is part of the foundation of our sense of dignity. We will be incredibly, instinctively ‘self destructive’ in situations where people are trying to take over our lives, simply to try to restore a sense of control. Rebellion is a common human response to control.

The second predictable outcome to my control would be your submission. Obedience is another common human response to authority. The more authority I have, the more likely you are to obey me. The more other people obey me, the more likely you are to obey me. The more I get you to believe that you are very, very bad at running your own life, and I could do a much better job, the more likely you are to obey me.

People express these conflicting responses – rebellion and submission, in a variety of ways. Some people, usually a minority, will rebell whatever the cost to themselves. I will see this as proof that you are out of control and need my intervention.

Some people will flick between times of rebellion and times of submission, expressing deep ambivalence and conflict about their relationship to this person in authority. I will ethos as proof of your unstable nature and inability to be consistent, proving that you need my direction.

Some people will become highly manipulative and passive aggressive, submitting openly but covertly fighting. I will construe this as you having poor boundaries, behavioural issues, and an inability to engage in normal, warm human relationships, proving the need for my management.

Others will become highly compliant and withdrawn, obeying all control and hoping that submission will stop anything worse happening to them. I will construe this as your passive nature, that you are clearly unable to direct your own life and see it as proof you need ongoing parent type support.

The nature of how we think and process our own experiences makes it challenging for us to hold this conflict in our minds. If I have taken power away from you, but also met your needs at times, you may find it impossible to openly criticise me. If I have a very hostile response to criticism, very defensive, and a lot of power to punish you, you may learn to never criticise me.

I will criticise you however, particularly if you disobey me or manage to try something for yourself which goes badly. Many things you try for yourself will go badly because mistakes is how we learn and the longer I’ve been able to keep you from making mistakes the less chance you’ve had to learn. I may also shame you for criticising, requiring you to constantly express gratitude to me for the very hard work I’ve done in helping you. You’ve been a heavy burden and very hard work at times, trying my patience, terribly ungrateful, rude, passive, and hostile. You will be constantly how inadequate you are and how much you owe me. The biggest things you owe me are gratitude and silence about anything I don’t like to hear.

You may internalise my ideas about my competence to run your life and police and suppress even your own thoughts and feelings – fighting your natural instinct to rebell and hating yourself for feeling that way. Now you have turned against yourself. You distrust your own impulses. You fight to stay in control of your feelings and urges, feeling shame about them. They are the enemy, proof that you are weak, sick, and incompetent. Further proof that I am right to direct your life.

You are also exhibiting signs of chronic disempowerment or institutionalisation. You have trouble making decisions on your own. You feel very anxious when you can’t get clear feedback that I our other authority figures are happy with you. You are incredibly vulnerable to the slightest shift in mood or sign that you are out of favour. You lack motivation and energy. You lack creativity and spark. You feel out of control, depressed, and miserable.

If you have turned against yourself strongly and effectively, you are so dissociated from your own feelings and impulses you would swear you are not unhappy. Your life and health shows the signs of profound unhappiness but you yourself insist that you are fine and that I love you and have your best interests at heart. If you were an animal, we might describe you using words such as tame, docile, or domesticated. Something essential about you has been crushed. You are incredibly uncomfortable around people who are not crushed. You tend to have an authoritative, brutal, detached relationship with anyone you are in power over.

I am exhausted and frustrated by your constant neediness. I am angry about your occasional criticism or rebellion, and your passive aggressiveness infuriates me. I may be desperately looking forward to the day when you start to run your own life and not need me anymore, or I may be dependant upon your gratitude to cope with my sense of emptiness, my chronic emotional starvation from never being real and open and vulnerable and having my own needs met.

I may not have started this process. You may have become afraid or overwhelmed and collapsed in my arms, looking for someone to follow and investing me with both the power and responsibility to direct your life. I may look like the bad guy but actually be suffering terribly, exhausted and totally confused about how to hand control back to you without you just being dead by the end of the week. I may live in terror of your irrationality, your self destructiveness, your bizarre, violent impulsiveness, your lack of self compassion or patience. When I try to leave you may harm yourself, attempt suicide, stalk me, stop eating, or destroy my reputation. Roles act as hooks. If I take over, you are likely to collapse. Equally, if you collapse, I am likely to take over.

I may be your parent, your doctor, your best friend, your partner, your shrink, your kid, your minister, your small group leader, your boss, your carer.

I may be the dominant part in your system, doing my misguided best to help us all function. I may try to take over (or be dumped with) every other role, not sharing any power or responsibly with the rest of you. I am good at some things but very bad at others. I am deeply frustrated that other parts fight me, disobey me, even hate me. I think my good intentions are enough and I don’t understand that being so intrusive is always harmful even when I’m doing it from love. The more desperate and afraid I am, the more control I take away. The more control I take away, the more my system shows the signs of disempowerment and alienation.

I may be you rational mind. Treated by your culture, your family, your shrink as the only bit of your mind that is really ‘you’, the only bit that should be in charge at all times, the only bit that can do what you need to survive and live, put in charge of every other system and function, and called to account for unconscious dreams, fears, desires, for threat systems and triggers from old wounds and pleasures, for fragmented memory structures and hallucinatory sensory input.

I confabulate stories to fill the gaps from when I was not running the show. I deny all other aspects. I claim to be the only self, the only voice, the only reality. I delete other perspectives, fight with them, silence them, and try to take over their roles. I remove instances of loss of my control from our master narrative of self. I pretend I am always aware, always online, always in control and ignore all the times we cycle into other states of awareness.

Sanity, I am assured, rests in my total dominance. Health is me being in control. No more daydreaming. No more idiosyncrasies. No more irrational fears. So I take over instead of being part, and we become less. Silenced voices fight back in rage or wither in isolation. We become less than whole. Instinctive systems are dysregulated because of my intrusive micromanagement; slow to kick in when needed, randomly intruding when not needed. Emotions are frequently ignored as ‘irrational’, cutting me off from the vast knowledge in omy unconscious mind. I have almost no intuitive capacity to understand myself or other people. I am terrified of diversity, difference, altered states, lots of control, dreams, spirituality, mystery, and human vulnerability.

Or I can recognise that I am part of a whole and step back. I can be the reflective process that helps us to learn. I can regulate the empathy that leaves us vulnerable to exploitation. I can gently challenge the irrational and bizarre thoughts and impulses that would lead us down terrifying paths, while recognising they are the flip side of our sensitivity and capacity to look for patterns. I can channel input from the unconscious and give it equal, but not more, weight with what I already think I know.

I can acknowledge the wholeness of self that is more than just me, my illusion of singleness, my illusion of conscious control. I can learn to tune in, learn to listen well.

And we can breathe, can speak in many voices, can recognise each others expertise, can work together. The brain is an argument, says one of my favourite neuroscience books (Into the Silent Land). The brain can also be a conversation, can also be a song.

So can our systems. So can our relationships, our families, our culture.

Kindness

It’s been a good day. I’ve cried a lot, washing out the emotional overwhelm from the past fortnight. I’ve come home to email inboxes totally out of hand, to do lists running into 5 pages, and so much coming in at me that I can’t process it. It’s hard for me to filter it or think clearly. My first couple of days back followed my usual impulse in such circumstances – work on it obsessively in a highly unbalanced way all day and night and become very dissociated from myself.

I’ve gone back now to the plan I was working before I left, where I work when Rose works and rest when she rests. It’s less than ideal from the point of view of those waiting to hear from me, but all I can do to look after myself. I can’t think very clearly or make sense of much of it yet.

But, this weekend has been lovely.

I’ve planted a lot of seeds and cuttings. Gardening is so grounding for me, I love getting my hands into soil.

image

Our lilies are blooming, and they are stunning.

image

Rose and I found this beauty in the side of the road for free. 🙂

image

The garden in winter is less spectacular than summer, but there are still treasures like this black pansy.

image

We have a healthy patch of nettles for teas, they are high in iron. Rose and I are enjoying a shared love of growing and tending.

image

Tamlorn’s peach tree was looking overgrown and unloved so we’ve weeded and laid down cardboard mats.

image

We had a beautiful morning at the markets buying fruit and vegetables together. We’re working on reducing our food cost and increasing our unprocessed food intake. I feel very inspired to be more green. We currently compost our green waste via a council bin but I’m looking into my own composter or worm farm. I’ve made my own cleaner by soaking citrus peel in vinegar.

Staying in my van on the recent trip brought home to me how deeply I love to be connected to nature. I was unhappy about throwing away fruit peels and food scraps into the general bins and I think I’ll try and set up a bokashi style bucket for my next trip. I was also… Liberated. Living more simply calms my anxiety. I feel more at peace, in balance, in harmony. Remembering that I need so little to really meet my needs made me less afraid of loss, able to be bolder and braver. I drove to Port Lincoln without (as it turned out) enough money to pay for the fuel back, and my tribe – you guys, my friends and family and people I’ve never even met, and my new tribe out in the country, you guys supported me, repaid my courage, helped me to fly instead of fall. Brought me home again.

I feel… So humbled. So grateful. It’s hard to find words. I’m part of something. I want to say thankyou, in some way. Not to rush on into the busyness but to pause and really let it sink in, and to really see you.

I may not be able to repay, but I can pay it forwards. I got home to discover that my most difficult to live with neighbour had suffered the loss of her cat. Her deeply loved pet had been hit by a car. So I went over to say I was sorry to hear it. One of my cats, Sarsaparilla, has partly adopted her and often sleeps on her porch. I offered him to her, with all his papers and so on, if she wants to have him. She cried. She said she was sorry for being mean. I forgave her. I think we are slowly starting to rehabilitate our street – the one where near fatal stabbings, arson, vandalism, drug and alcohol issues, and cruelty are so common. We might not be enough to turn the tide, but at least we can acknowledge the deep woundedness beneath the violence. At least we can be kind.

Love. How simple, how difficult. We who have the biggest dreams, who want to change the world, who cry out in fear and pain – how? Well, this is how I’m doing it.

Facial Blindness

Siiiigh, so a great person introduced themselves to me the morning of the recent conference, tells me they know my partner, and really does it with such aplomb, I’m impressed. We have a brief chat about her work, my blog and so on. I’m looking forward to talking to her more.

That evening a great person sits down next to me, we start talking, I ask about her job, tell her about my partner, and so on. It’s not until she gives me an odd look and says yeah, your partner is great!… that I realise it’s the same person and I’ve just put them through the identical conversation.

Goddamn I hate doing that! Grr dissociation can be a pain!

It was many years before I came across the term facial blindness. I really notice it at conferences! If I want to thank or speak with a keynote speaker, I must be quick enough to get up the front and identity then from close up before they are enfolded by the crowd. This is because I cannot actually identify them by face. I live in fear of shaking the wrong hand and thanking a random audience member for their great presentation…

I have no idea who most of these people are and can’t identify them by sight unless several system members have spent time with them.

How can I be at a mental health conference and experiencing dissociation and still feel like no one would have a clue what that is or be comfortable with me talking about it?

Sigh.

Tony Hill, one of my favourite fictional characters, describes himself as ‘passing for human’. That exactly how my invisible disabilities and diversity makes me feel, like I’m pretending to be normal and getting caught out.

In this case, on my third interaction with the lovely person, I grasped the nettle and mentioned I had facial blindness and that I needed them to cue me about their identify for the first 10 or so times we meet. They took it really well and I felt less the freak. Sometimes we have to be brave to make the invisible, visible, and to speak the taboo.

Poem – The Dog in the Night

On the last hour
Of the last day
Of the conference
I find a way to hear and to speak
Trembling and ticcing, blurting and startling,
We have our first exchange.

She looks at me shrewdly – “It was hard for you to be here?”
“Yes.” I say with feeling
And suddenly they don’t listen because I’m armoured and brilliant
But because I’m naked and passionate.
Showing up was so hard.

Here, on the bay, afterwards,
I wake from a nap
To find the light fading
And the water calls to me, needs me to be
Out by it, watching the light fade from the sky
So I slip my velvet dress on and my woollen warm things
And go stand in it, in my little shoes,
The ones I wear because it is so very easy to slip them off
And go running over the lawn, like a child
Some things are easier to hear in clothes like this, easier to be present for with
Bare feet on grass.

The sky is a windswept fire
The ocean murmers a gentle heart beat
Grass sharp with cold dew
The stars, coming out, faintly, one by one
And I can’t help but wonder
If it is also hard
For my world to show up
Day after day, to a people too busy,
Too sick, too broken hearted to see or hear its language
If there’s some vast, subtle grief beneath the splendour
If the daisies, opening their faces to the sun and going to sleep again with the night
Close their petals with sorrow
If the crickets singing chose that deliberately wistful tune
Or the anxious dog out there in the dark, barking his incoherent warning into the shadows whenever I move
If he isn’t also crying out in a language I can barely understand,
Telling me the hour is late –
The night is vast.

The dolphins in the bay sing of love
But the dog in the night warns of loss
We have so little time left
To learn how to live.

In front of all this splendour
My hands feel so empty
I want to give something
Make something, touch something
Find some token of love and affection
To return to the world
And yet
When I open them,
The moonlight fills them
When I touch them to my face
They smell of the sea.
It is the question, and the answer both.

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.

image

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.

image

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.

image

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

image

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.

image

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.

image

image

image

image

image