Dreaming of death

Woke from nightmares with a cry (her face was wet but she couldn’t speak anymore, so near death, she could give no more comfort and answer no more questions). I’ve cried so hard my face is swollen. I have to get up for class, my favourite today, sculpture. I want to turn out the light and go back to bed and try to dream sweeter dreams. I wonder if that’s what a brief life is like for a miscarried embryo, a sleep, a dream, and a sleep. I wonder if they ever get any other dreams. I can see the faces of people lost to me and the world itself seems fragile, paper torn in the wind. My hopes of safety, meaning, reconciliation all feel like a child’s dream. A sense of order where there is no order, only darkness, only loss. It seems unbearable to be human today. Our baby is safe, but we march into the future as if all will be well, as if there will be no cost. I feel friends falling like autumn leaves, into death. With dawn comes dusk. We love, and are consumed, and some day our arms are empty. A cold wind blows right through me.

No words

No words, no words, or none of the kind that need another, no back and forth of dialogue from where I am, somewhere between awake and asleep, a shuffling bewilderment, dawn that promises to come but does not come. I’ve no words here, no words for this place, no way to describe or explain, no justification. My eyes, my eyes, they ask questions I can’t voice, they look out of my face like dough, my flesh like bread, and there’s a kind of searching I can’t name, a sense of loss that the face in the mirror isn’t me. The tasks stretch before me like days, they are a thing I understand, I bend myself to them. The written word does not break the vow of silence, the secrets can be mumbled, I share them without sharing. I’m lost, wandering my house with the bread rising in the oven, I’m lost. Some shadow calls my name, some darkness clings to me from sleep. I dreamed of dragons, of a world flooded, darkness that moved upon the water. I dreamed of dragons. The bees are in the basil. The child is in the womb. The weeks lie before me with all their tasks. I’m here, trying to find my way to your world, the key that turns the lock and yet, and yet, I want to stay. This is not air that I’m breathing, all my words are in my hands, in the touch of my fingers. I’m caught between worlds, on the other side of the glass, out in the night where all things are naked and only themselves, out where the dogs cry and the moon is bone white in the sky. I could shake my head and shake the shadows from my eyes like dew, step over the threshold into the world of words, reassure you with a smile. I could take up limb, tongue, conversation without sacred touch. But I think I’ll stand here a little longer and listen to the other world. The sound that hearts make, yearning, even yours child, throat unstrung with harpstrings yet, in a place where longing is the only language.

Poem – Love song

I rarely share freshly written poetry, but this is an exception. 🙂

Little one inside me
All you know of the world is my body
So I take you with me and listen closely
Breathe it so you may taste a little of it.
These are waves, little one, they are
The heartbeat of the ocean
And these are stars, remote and beautiful
That feeling inside me is awe.
Alone in my bed, weeping; this is fear
My blood that calls your name before you have one.
This world at times is all shadow and sharp edges.

Here in my garden, I breathe in sweet basil
This drumming on my skin is rain

It’s autumn here, the jonquils
Push green fingers up through dark soil
They will bloom and die before you arrive. 

That burr of softness is my sweet cat
Kissing and purring – your mama thinks
He knows that you’re here – he wants to be with me always. 
In our own way, all these things
We are all singing to you
All in love with you, nameless one
All calling you home. 

Lucky and happy

This has been my first weekend in forever that I took off and booked no face painting gigs. I have had the most wonderful day! I’ve lazed around in front of the air conditioning, done a little gardening, cleaned the kitchen and bathroom, shared lunch with friends, chatted away to lovely people online. Rose is organising dinner with fish and avocado and I’m very excited about it! Mmmmm. Our new game of Ghost Blitz came in the post at last. 😀 I’m loving playing games together in the evening, it feels like a good family ritual to be developing.

I nearly forgot I had a shrink appt today until my phone reminder went off an hour beforehand. Living with dissociation has been significantly easier since I got a smart phone! It was a great appointment. I’m so appreciating the support I have around me at the moment. There are some wonderful people, my doctor, my shrink, my partner, friends and colleagues. People who are so excited for us and with us, people reminding me to enjoy this time, people making safe places for me to be afraid or sad, to fumble my way into this new role and find confidence that I can do this. I’m not alone!

At times I feel embarrassed that things are going so well, sad for those I know have tried so hard to have children, or lost so many babies, for those who are horribly sick through pregnancy and have so much stress and pain to deal with. I feel so lucky. I’m hoping to be sensitive to those who haven’t been. I don’t believe there’s more to this luck. I don’t believe people can’t conceive if the universe doesn’t think they will be good parents. Life isn’t fair. I’ve been lucky so far, not divinely blessed. And I know how much other people’s good fortune can hurt. Even beautiful, lovely, ecstatic Rose feels pain that I am carrying when she has lost so many. I hope I’m a sensitive partner for her, making space for those feelings too, for the shadow of such fortune that falls over some of us. And I hope our luck holds. 🙂

Passed all the first tests

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We went to see our doctor today and got the first round of blood tests back. Everything is looking great! All my levels are excellent, ditto my blood pressure, there’s only two points of caution. One is that I have no immunity to a couple of common viruses that are pretty harmless unless you are pregnant, so I need to be careful about snuggling up to sick kids, the other is that I have O- blood and the baby will most likely be O+ which simply means that I’ll need a few shots to prevent my body making antibodies to the baby’s blood. My GP is wonderful, she’s so happy for us and excited about the baby. She reminds me to soak it all up and enjoy it. 🙂

So everything is looking wonderful. I’m having a very easy ride at the moment. I’m craving salads, pickles, licorice, and salty crackers. I’m not having much trouble with nausea at all unless I eat rich foods. I’m tired but it’s pretty much the same levels as my fibro in this weather. I seem to be one of those incredibly lucky women who find pregnancy suits them – some women with fibro are the healthiest during pregnancy. Wow! Life is really going my way at the moment!

We had a bumpy couple of days recently when I experienced a little bit of bleeding. It’s not at all uncommon but Rose and I were both very anxious and she struggled with some flashbacks to her losses. It’s hard sometimes. We wound up talking each other through it by deciding that it wasn’t really possible to ‘not feel worried’, both of us were trying that and failing. So instead we went for ‘it’s okay to be scared, but until we definitely know for sure that we’ve lost this baby, we are going to be fighting for them and cheering them on’. That was something we could do. We also talked about a name, lovely but impractical, to give them if they don’t make it.

But things are settled and all is going well. We have our first ultrasound booked for a fortnight and we’ll get to hear the babies heartbeat. I’ve booked it for a day Rose isn’t working so she can come too. Just thinking about it makes me tear up. It’s funny, everyone keeps reassuring me it’s normal to be teary and hormonal – I’m pretty much always like this lol, emotional is what I do! In fact I’d say I’ve been the most consistently cheerful and content in the last fortnight than in forever. Rose agrees, although she has mentioned I’m also a little more irritable especially about anyone being an idiot or stirring up trouble. 😛 I’ll cop to that!

The Wishing Tree

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I’m 6 weeks pregnant today, and not feeling right, which is making me anxious. I went to see this exhibition yesterday, part of it was a wishing tree. We were asked to write a wish and tie it to the tree. I’ve written please let the baby live.

My favourite embryo

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I’ve finished a happy weekend of resting and face painting. Face painting is a funny thing. You can have the best of worst day depending on who you work with. Sometimes you get lucky and the people are amazing, so friendly and welcoming it’s the best job in the world. Sometimes it’s frankly horrible, drunk aggressive guys who try to touch you or parents who hit their stressed out kids in front of you. This weekend was the great kind, and today Rose and I finished a lovely gig by heading home via a little crafty town and buying blackcurrant and lime sorbet and window shopping.

I’m still pregnant, and not particularly feeling it. I am eating lots of smaller meals of veggies and fruit and my tastes have sorted from being keen on sweet to interested in salty flavours, which is pretty weird for me. Nausea isn’t an issue as long as I don’t eat anything too rich or processed. I’m drinking loads of water, sleeping well, and generally feeling all glowy and content with the world.

Except for my breasts, which are larger and extremely sensitive. Trying to sleep on my side feels like I have rock melons taped to my chest. Being bisexual I’m usually a big fan of breasts but at the moment I don’t get why we don’t have just flat chests with milk ducts and nipples. What the hell is with the rest of the breast tissue? Why? Grr. Mine are currently completely off limits to Rose and for the first time in my life it’s less painful to keep the bra on at the end of the long hot day. O.o

Rose and I are connecting with other Mums; baby wearers, queer mum’s, mum’s who have experienced pregnancy loss or still birth. There’s so many people put there going through similar things, in so many different ways we are part of big communities.

We feel blessed and hopeful and afraid in equal measure. Some nights it’s all bliss, others our little room is a a Tardis, expanding to fit all the fear and pain of loss. There’s such an experience of being human, our helplessness and vulnerability, how fragile our hearts are. We hold each other in the night and tears fall like stars. I tell Rose there’s room enough here for her fears, her ghosts too. As she drifts off to sleep she tells me “goodnight my favourite person, goodnight my favourite embryo”.

On Cloud Nine

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This was my attempt to record the most incredible sunset we had here last week. I’m having a fantastic day! I feel amazing. My tummy has the very tiniest swelling which Rose can see when I’m lying on my back. She’s taken to cupping it in her hand and singing to it. I’m eating mainly fruit and veggies which are sitting really well at the moment.

College is great! Pregnancy is great! Rose is wonderful! And my networks are coming together!!

I am meeting with people and having people reach out who want to get involved with the DI or HVNSA, want to share the load and mull the tricky questions and have a shared passion for people. I’m so excited I could burst! So humbled and fortunate to be meeting these people and gathering them together. Every time someone says something that I’ve been thinking, worrying about, or hoping for, my heart leaps that these are truly like minded people, diverse and different but with the kind of shared values that will make this possible. Our community is coming together and I believe we will be stronger for it. 🙂

Welding and pregnant

I’m 5 weeks pregnant today! The little one is about the size of a sweet pea (5mm) and has a heart beat. At the moment pregnancy is like a slightly rough day with fibro, only a lot more exciting.

Today was sculpture class, which makes me feel so contented and at home. I learned to weld! We’re starting with brazing welding with the oxy-acetylene torch. I’m glad I’m pregnant in this class instead of painting – the fumes in painting can be a big issue as well as skin absorption. I made this little critter for my garden:

2015-02-18 15.29.56-22015-02-18 11.40.37-1It was wonderful. I’m so glad I’m still doing this degree. I have no idea how it’s all going to work out, but to spend time with other artists in a studio learning new skills makes my heart happy. And we have the best tutors in this class. Something good will come of it. Tonight and tomorrow are HVNSA and DI meets, something also very exciting and at times anxiety producing. Hoping we create something good out of that too. 🙂

Things without name

Appreciate darling Rose who had packed of lunch box of food unlikely to make me sick. I’m feeling nauseated a lot of the time, very tired, mad dreams. Pretty much like fibro really, being pregnant. I’m unsettled and feeling strange things that are hard to name. Oddly lonely.

Yesterday I was reading Idylls of the King by Tennyson for art homework. I also read a bunch of sites about starting Not for Profit orgs and setting up committees and so on, until the sense of displacement and anxiety crawled so high up my throat I couldn’t breathe anymore. Reading about Arthur, the ordained king and his knights in which he had such faith, their overturning of the old world and their bright hopes, all ashes by end, felt so fitting I cried. Of the original DI board, most are not speaking to someone else who was on it. We start things with such hope and end them in such ruin. And the ones that persist seem to lose all the glow of kindness and passion that brought them into life, becoming mechanical, unwieldy, inefficient, consuming. I have such hope but so very little faith. “Everything anyone has ever thought is true… I’ll be alright, and I’m going to die. Both of those are true too.” Do Androids Dream of Electric Sheep? Phillip K Dick

Here I sit between classes, feeling the slight stretch and pull of my womb growing, eating these small tokens of devotion like a sacrament, feeling blessed, feeling humbled, feeling out of step with the world. In a place where things are not themselves, not as they seem, names that do not fit. Like you, little nameless one inside me.

Rose and I hold each other in the soft hours, away from the critics and the judgement, feeling the faint terror under all our days, the burning love. Do you think we will feel less afraid when the baby is here safely? No, never again, it is to live with your heart outside of your chest. I’ve been here, waking from nightmares where my family are slaughtered, or sitting by the bed of someone beloved who is dying, saying goodbye and trying to fix the details in my mind. I’ve been here, feeling alone and exquisitly vulnerable in the vast darkness and fragility of life.

“The Sea of Faith
Was once, too, at the full, and round earth’s shore
Lay like the folds of a bright girdle furled.
But now I only hear
Its melancholy, long, withdrawing roar,
Retreating, to the breath
Of the night-wind, down the vast edges drear
And naked shingles of the world.”
Dover Beach,  Matthew Arnold

“It’s a wonderful, wonderful life, if you can find it.” Nick Cave

When it won’t rain so you can dance in it, turn on a sprinkler

The most fun thing I’ve done so far today was take off my shoes, turn on the sprinklers, and do an hours weeding and pruning in the garden. It’s hot here still so I wasn’t getting chilled, just feeling water streaming through my hair, mud sticking to my feet. I filled the massive green compost bin again with daisy, geranium, and basil, revealing a tiny ground cover daisy and a strawberry plant with two ripe fruits on it. After years of plants struggling along in pots I’m new to plants going so well that they take over my garden and eat other plants, pots, and garden lights. I’m learning to be harsher with my pruning so there’s room for everything. There’s probably some life metaphor in this navigating abundance but I’m sitting here in my underpants with wet hair just feeling a hell of lot better about life and happy to have some P!nk cranked so I can’t hear the neighbour anymore.

Still pregnant. Rose is still sick. She has woven a bunch of new colours into my dreads that look awesome though. 🙂

Still here, still pregnant

Whoo!

So, I did a 5 hour gig at the Adelaide Zoo today in 40C degree heat. Fortunately they put me indoors so I didn’t spontaneously combust at any point and merely came home fatigued and sticky. I painted people and wrote poetry and cautiously ate small healthy morsels of food, having learned to my dismay in the early hours of that morning that I am not processing rich foods well, and by rich I do not mean a litre of chocolate icecream, I mean stirfry with sauce on the noodles. Daaaaaymn.

I’ve binge watched Zero Punctuation game reviews, episodes of ER (yes, we are switchy, what of it?) and milled through that odd state where you’re too tired to do anything useful or focused but too bored to keep lying on the couch. I’ve bought groceries, and tidied the kitchen and sorted the dishwasher in 15 minute bursts.

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Games night it is! Trains, infectious diseases and so on to the rescue. Rose is trying to breathe through a head full of snot and feeding me large plates of salad that to her are currently merely an exercise in interesting textures. I have stocked up on nuts, seeds, fresh and dried fruit, and tried making my own orange juice iceblocks because I’m sick of the sickly tasting sweet ones from the shop. I have also bought honey macademia icecream, but as my insides feel like someone is actually rearranging the plumbing and may have left a few crucial parts out, I don’t think I’m going to try it tonight.

I sometimes share amusing stories about Rose sleep talking, which I love. She had a chance to return the favour recently. She woke up in the small hours and reached out for me and told me she loved me. I was still asleep but apparently reached over, gently patted her on the face and told her “Yes, I know. I love you too Zoe.”

Big News

Pregnancy AnnouncementYep, I’m pregnant. Positive test yesterday, doctor confirmed it today. 🙂 Whooooo hooo! All things being well, we’re due in October.

To anyone else who wants to tell Rose or myself not to get excited, that 4 weeks is early days, that half of all pregnancies this young are lost, and that we shouldn’t share about it until we’re further along, I have this to say: it’s probably a wise idea not to be standing in the same room as me when you plan on doing this. Seriously.

It does not hurt less when you don’t talk about it. (it does hurt less if people are less full of crap) It does not hurt less if you’ve tried really hard not to be excited first. It does not hurt less if you know all of the nasty statistics. You are welcome to navigate sharing, openness, and excitement however you want to. This is our way. Consider yourself warned.

We’re pregnant, third month of trying. We’re thrilled! We’re hopeful. We’re painfully aware of the possibility this will be a 7th loss. Doing the pregnancy test was, frankly, an act of courage, because it’s hard to do something you know will break your lover’s heart a little bit more. You have to wait three minutes for it to tell you results. I left it on a bench with a timer and wandered out of the room – Rose found it and told me, a delightful reversal of the usual roles.

I have a teeny little thing inside me that’s trying to grow into a person! So far health wise I’m okay. The sinus infection is more of a problem than the pregnancy.

We wouldn’t be here without Rose. I was never prepared to be a single Mum with my health issues, and I’d been told that with endo, 30 was my cut off to start trying. As 30 approached and I was single, closeted, and wrangling with a complicated life and head space, I let go of the dream that I would be a Mum. I borrowed books on infertility and started to mourn. Then this beautiful, smart, vivacious lady came into my life, with 6 losses behind her and a burning desire to be a Mama. Two and a half years of building a relationship, getting engaged, moving in, sorting out jobs and head spaces and life together and what feels like about 50 cats, and here we are. In with a chance at turning our lives upside down and inside out. Hoping like hell this one sticks.

Alone and naked in front of the crowd

Stuck for words. It’s late at night again and I need to go to bed but I want to write. There’s so much going on and I want to share but I can’t put my thoughts in order or break things down to something that makes sense and stands alone.

I went to bed last night and broke into small pieces, sobbing my heart out while Rose sat with me. I wept until I couldn’t breathe. I cried so hard my eyes were still swollen this morning. I felt utterly lost and full of pain.

I’ve always been this way, cried like the world was ending. I’m reminded of a guy I read about who was suffering from severe depression until he figured out how to manage it ‘Now I just cry a lot’. I’m reminded of the people I’ve sat with as they sobbed with utterly broken hearts, how much courage it takes to sit with someone in that place.

I’m painfully aware of being on display at the moment, while we’re trying to get pregnant. Unsolicited advice, scrutiny, judgement. It’s hard to speak in this place, hard to share.

I went and saw my shrink today. We talked about work, about the self loathing that’s been so intense lately, the house move, the sense of doubt. We talked about my peer work, my sharing of my vulnerability, the way I pull apart my image of competence and show people my woundedness. She described it as being alone and naked in front of the crowd. The phrase has rung in my mind all day since. And this, the insecurity, the doubt, the pain, was the cost of that. Perhaps if I can accept that, there might be less to hate about myself. We talked about doubt being my gift, a thing that allowed me to untangle myself from beliefs that were killing me, to question powerful people and paradigms, to listen to people because I’m not certain I know the answers, and the cost of that, a sense of being lost and confused by the world. The prices we pay for our freedoms. It’s a strange and deeply relieving thought.

Trying to start the local Hearing Voices Network fills me with ecstasy and triggers deep self loathing. Imposter syndrome, a terror of leadership, of power, of people listening to me or following my advice comes over me, I find myself at the bottom of a deep ocean of self hate that’s almost unbearable. People reach out and their compliments are like a breeze blowing on the surface of the black water, down at the bottom I’m still drowning.

Rose and I had the most lovely evening together. She cooked me dinner, we baked a cake for a friend’s birthday. It was beautiful, full of simple joy. My mind was clear and quiet. I don’t feel like I’m drowning. We made little cupcake decorations and sang to each other. Every morning I’m still surprised to wake up and find her in my bed. This woman who glows in the afternoon light, who reaches out to touch my back when I cry, who reads me to sleep when the night stretches long before me. The people who have reached out, to say thanks or that I am in some way a useful person in this world, their words come back to me and I can hear them more clearly. There’s people, like Rose, who believe in me, for reasons I can’t fathom and in ways that make me terrified of failing them, paralysed by my conviction that I’m going to let them down. But there’s also the gasping breath after the sobbing cry, the kind touch, the sunlight golden through the window. The ocean has receded tonight and a cool wind blows in my mind. I’m grateful for love, grateful to be here in the dark writing, grateful for the days I can bear touch, can accept kindness.

Bouquet

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We bought Rose a bouquet to plant in the garden today, in purples and oranges to welcome her to our home.

Our injured neighbour is home now too. I took her a rose today and she showed me the horrific black bruising from her elbow to her hip. I’ve never seen such severe injuries on someone who wasn’t in a car accident. 😦 An artery was severed in the knife attack and she nearly died in surgery. She was walking around and pretty cheerful so she’s doing well. It’s sobering.

We installed weeping hoses in our potted trees today, and set up a sprinkler system for the rest of the garden. Rose dug out a new bed for strawberries. The bees are in the basil and the thyme is fragrant when you brush past it. I’ve hollyhock seedlings to plant out tonight when I get home and coriander to line a path. The autumn roses are blooming and the figs are ripening. It’s a small busy world to get lost in, one that almost makes sense, almost feels like home.

Games and gardening

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Rose and I are pacing ourselves through all the stress with good distractions. A couple of wonderful people have made donations through this blog recently, and we went out and bought this very cool game. To mark the official first day of living together, we stayed up very late playing it. We’ve since taken it with us around to several friends and family to introduce them to it.

Today we did a stack of stuff around work, the kind of ‘send people into panic attacks’ stuff, so we also went to Bunnings and bought a few things to do in the garden. We stayed out until dark today cleaning up the front of our place, sweeping, potting up plants and installing a watering system. I’m sore, tired, but happy to have a break from the big stuff.

I can hardly think straight. I managed some critical admin today, I haven’t replied to a stack of messages yet or managed to untie my tongue to thanks the kind readers who’ve donated and sent wonderful messages of support. I’m having a lot of trouble with my ‘I hate myself’ voice at the moment and I feel wildly undeserving, even ashamed, of such support. It’s really hard to respond to graciously the way I want to. I feel like I have all the words in my head and then just sit at a blank email like a kid with shorts soaked in pee giving a grown up that good look right in the shoes and I can’t find anything to say. But thankyou, you guys. I do appreciate it, a hell of a lot.

I also did some reading about not for profit structures as the Hearing Voices Network has some keen people behind it and I may if I’m lucky, not have killed off all the enthusiasm over the Christmas and mad January that I’ve made them wait. I’m stressed and anxious and can’t think clearly or find time to ask all the questions or share all the hopes and fears. I’m tired from moving house, feeling burnt out – but in other moments thrilled, on the cusp if something amazing if I just try a little harder… And, you know, possibly pregnant and in that irritating two week wait before a pregnancy test can be usefully done. This is cycle number three of trying.

I’m sharing a house again. This is a big change! I could hardly roll over in bed the other night for all the cats and woman next to me and I thought to myself get used to it! My brain feels a little stretched.

But the garden looks great.

Poem – Here, in the dark

Here, in the dark, a deep contentment wells
I’m happiest here, alone with the books and poems
There’s such richness in them, such joy
I’m glad to be a writer, to count myself among them
They set my dreams free, ward off the creeping death
The chill, the grey, the numbness that overtakes me
The malaise I am too weak to fight alone
This strange religion so widely believed
That this is all there is and all that matters
These people whisper in my ear that I am mortal
That life is wondrous strange, that imagination is as real as shadow, love, hope, and the trembling sense
Of sublime meaning, that there’s some sense to the world, some pattern to our path, a meaning in our doings and our withholding
That such is a gift, as the trembling doubt is a gift, that they stretch our spirit and give us humble connection to each other, all bowed and small before the great tides, all with the knowledge of joy and loss, this thing that can unite us.

Little unborn child, I’m glad you did not rush your coming past me and my night, did not slip past the shadows and into daylight without my chance to wait with you, darkened world and dark womb, to wait with you and think on you and speak to you and write of you. Little unborn, so loved and so unknown. I wonder if you’ll have any night in your soul? Any darkness in your eye, any poetry in your heart?

If it’s the unlived lives of parents that marks children’s paths you’ve quite a labyrinth to walk, my love. My life may be only a small portion of the Life, but it’s dear to me, deeply lived, dearly loved.

Rudderless we lose our way. But I know what I believe. Whatever stories we tell, they stay the same. I believe in kindness, evil, love. They are real, and powerful, and come wrapped in strange disguises. I do not know why, if it has always been so and if it is the same everywhere, but the real world thins and fades fast, like candles wearing down, and must be renewed often. The key is in the seeing clearly, the right naming of things. If I understood this I would understand the language of owls and the dance of planets. Such is our life. We sing and falter and fall and rise to sing again. We are both darkeness and light, faith and doubt, sea and shore. Each of the seasons have their turn, we understand great wisdom, and lose it, only to gain it again. Somehow it’s not meaningless but beautiful. We are reborn.

There’s a quiet ecstacy in my bones, they chime softly to themselves and speak the language of planets, spinning in space. I’m inviting a family into my home, into my peace and solitude, and I feel ecstatic joy at the breaking of our time of quiet. I welcome the tearing down and the giving away. Wine is pressed from my trampled heart, flowing dark and sweet. I’m happy beyond speaking that my life has come to this. It’s worth the risks. Should all end in fire, I acted with courage, I dreamed a new dream and birthed it here, on my own, in the dark.

(don’t pity me, what’s to pity? I’ve lived richly, seen things you wouldn’t believe)

This is not the last night, there’ll be more nights, more writing, more poetry, pacing with babe in arms, walking in rain with dog, sitting up late by the ocean, listening to my heartbeat. I know this as surely as I know this is my hand and this my hip. I know this like I know the breath in my chest and pulse in my throat. I know it and I’m fiercely glad of it. It is a good thing to be alive, so deeply alive, so full of stars and night.

Apology to the universe

We wrote this one a little while ago and let it wait in drafts a bit. Today it’s not where we are, but it was asking to be published.

I’m sad, sad, sad beyond bearing. I wake from honesty and find myself wordless and lost. I must dismantle it all again, over and over. (living is about betraying your own identity) The constant search for the point of balance between light and dark, day and night, responsibility and freedom, the place where my name has meaning and nakedness is possible.

I’m sorry!

I’m so sorry for a million things I can’t begin to put into words. I’m sorry that I don’t understand you better, that I can’t follow you, can’t hear your heart beating in this night. I’m sorry for all the ways I let you down, that I’m not who or what you need, that I leave you hurting, mouth full of black night, lips closed on black blood. I’m sorry it’s imperfect, so hard to speak truths at noon, so hard to bear touch without turning off your skin so you can hug without flinching, without the smell of another person getting into your nose and staying there like a cologne you can’t bear. I’m sorry that I’m broken too, that I don’t have answers and don’t even always understand the questions, that the night baffles me and the day dazes me, that I know so little and can’t draw you a better map. I’m sorry that it’s so hard. I can’t bear it either, some days. It just fucking hurts. It just bleeds from you.

I’m sorry that sometimes you still feel so alone, even when I’m right here, that there’s parts of you I can’t reach, that holding your hand or speaking your language isn’t enough to make you feel heard, safe, loved, connected. I’m sorry for the days we just feel like planets spinning in space, untouched and light years from touch. I’m sorry that words stick in my throat, that I find it so hard to play at being a good host, even when you’re so kind and respectful, that it takes days or sometimes months before I unfreeze and reply. I wish it didn’t, I wish I did better, but I get scared and I’m not even certain what I’m scared of.

And at the same time I say I’m so sorry I can’t make it better I want to tell you – beware those who tell you they can! Beware the gurus, the cost of their salvation is much higher than first apparent. Beware those who are healed and whole, who never suffer and are not lost, not bewildered by the world, not sickened by the violence, the rhetoric, the vile squabbling of those with full stomachs and empty hearts. These leaders who are fit to lead, confident, with their easy grace and their warm smiles, I know the lack of doubt is like sun after a long winter, like rain after drought, but be careful. Sometimes there’s a kind of healed that isn’t so much whole as it is wilfully not knowing about the cracks about the outliers about the contradictions. It’s fitting the dress because the surgeon cut out every part of you that didn’t, and don’t you wear it well? And aren’t we all so envious?

The world’s on fire some days, so full of pain I don’t know how to bear it. A thousand stars reflected in the ocean. The vast and distant echo of your pain sounds in my skin like a gong that is struck and reverberates on. I cannot bear it and I cannot bear for it to be silenced.

Be a little kind, a little brave. I’m tired of the boxes that we live in. There’s so much here, beneath the surface, that connects us. So much human feeling. None of us owns pain, any more than we own the cure. We’re all broken, and the ones who know it least are broken most.

The Big Move Begins

Simultaneously emptying my unit of excess paraphernalia, packing up all Rose’s belongings, and moving her in.

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We’re using this room at my place to hold each days collection of stuff for sale, collection by a new owner, or donation to the local op shop.

It’s a big job, but we’ve made a start! Personally, I’m really excited. 🙂 Although I must say, it’s easy less fun than planning a wedding and the fanfare of that kind of relationship change. Once we’re sorted, I’m looking forward to planning a big, fun, engagement party.

(and probably building a cat run so we don’t find ourselves living in a cat war as Rose’s cat Bebe will be joining us very soon!)

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Don’t talk to me about my To Do list.

Tribe Night

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At least once a month Rose and I set aside some time to spend just the two of us. No friends or kids or work or stress, just us, celebrating us. Often we don’t call this a date night as not everyone in my system is ‘dating’ her, but instead she’s coined the rather lovely phrase Tribe Night. What we do depends on who feels like they need some time together, and how much money we have. As Rose is still waiting unpaid for her new job to start, tonight is a budget one. We’ve got movies from the local hire store, popcorn, and the half eaten gorgeous gingerbread house that was a Christmas gift from a generous, creative friend who cooked it in her tiny toaster oven in her apartment and probably lost a few more sanity points in the process.

Other favourite tribe night things to do are nights at the beach, hanging out in the trees at our local park, going to the movies, our favourite local Asian fusion restaurant, going out to fun art or cultural events, especially the free kind where dressing up can happen, hanging out in the nude with all the curtains drawn and good music, (some of us are lovers), camping nights away, and for the really introverted, reading together in bed.

Sometimes we have to work around health issues too, I read this gorgeous blog post the other day and thought it had great ideas for not-well hang out times: 10 Crip Date Ideas for the Disabled/Chronically Ill/Mad Person in Your Life

Have a good one folks. Don’t forget romance is not the sole domain of lovers.

Inner children – shame and threat

For many of us with multiplicity, figuring out how to live with inner children can be a huge challenge. I’m certainly no expert on this and don’t have this all figured out with my own, but some guiding principles have worked well for us that might be of help or interest to you.

The first massive challenge for us was to learn to cope with the deep shame we felt about them. For example, we have one who is 5. She’s very sweet, curious, and playful. We first noticed her when we attended uni one day, and she turned up thinking it was her first day of school. She was fascinated by the shiny wrapped chocolates in vending machines and terribly anxious that maybe she’d forgotten to put her underwear on that morning. We were co-conscious and felt blind terror that someone might notice her ‘weird’ behaviour. Our ‘intellectual adults’ in particular were dismayed at being mistaken for this impulsive, cheerful creature who balanced on the edges of the garden beds and skipped down stairs. It felt like a profoundly visible difference, a severe disability that would stop people seeing us as smart or dignified or other things that are really important to some of us. So our first reaction was mainly horror.

Shame went deeper too. Having kids tell the white lies all kids tell, exaggerate an event, make it sound more exciting or themselves more brave, skip something they’re worried they’ll get into trouble over… We didn’t cope. We first hated ourselves with a deep passion. When we realised we were multiple, we hated them instead. For a long time we did our best to completely suppress them.

Reducing this shame was partly about understanding them in context. It helped us to read about attachment disorders and realise that the issues we struggled with were very common. It also helped to spend time with other kids that age and realise that our expectations were crazy high for our own. It helped to look at photos of ourselves at those ages and realise that although we had felt mature and responsible and old at the time, we were just very little. We had some mad ideas about ourselves as children that we had to confront, and some internalised ideas from other people we had to start to question.

Fortunately, system members who felt less threatened by the kids had very different reactions to them. One in particular was very co-conscious and curious about the way that people didn’t pick up even when the 5 year old was out. People just don’t think of multiplicity. Even pretty overt behaviour wasn’t noticed, particularly by strangers who didn’t have any idea of who we were usually, or what to expect from us. It was a startling kind of freedom.

We also started to notice some of the pain of being a child in an adult world. How difficult life could be for them, how lonely they were, how bewildered they were by adult concerns and choices. Once this sweet little girl came out, curled up on the couch, and waited for someone to bring her something to eat. She ‘wasn’t allowed’ to open the fridge or the freezer or make a snack, and she didn’t know that no one was coming. Life can be strange and lonely when you miss great chunks of it and the rules change without anyone telling you.

Being able to take a step back from feeling overwhelmingly threatened and just observe and learn was important. This was a slow process for us, years rather than weeks. A system in survival mode is a system geared to feel suspicious and threatened by everything! Initially there was no trust between us and a lot of scrambling to stay in charge and in control by the ones who so deeply feared losing it. All our models of losing control were about disability and loss of functioning, people who wound up in hospital needing constant care. For a long time it felt like we were fighting for our life, and fighting a doomed battle at that, that life long severe mental illness was our destiny while these parts existed. Discovering that sometimes kids brought joy and hope too was a massive surprise and helped us begin to question our assumptions about what it was to have inner kids.

Humour and compassion are powerful alternatives to shame. Over time I found I could re-tell the story of having a five year old switch out at uni and glue herself optimistically to vending machines for significant periods of time hoping chocolate might come out of it… and laugh, and make other people laugh. Life is bizarre and absurd! Taking it, and ourselves, utterly seriously is a quick way to find ourselves forever disappointed, threatened, and miserable. Embracing the humour and pathos in equal measure has served us well. It’s not about laughing instead of crying, but as well as crying.

These processes of learning and listening and questioning built some empathy and we began to relate to the kids as real people instead of just a burden or nuisance. They weren’t just symptoms of a disorder, or here to make my life difficult, they are just as real as I am. Their joy and pain just as real. It became less stressful to let them have some time out. These days if the 5 year old is out when we’re buying groceries (or more likely, candy) then people such as check out operators generally talk to us as if we are intellectually slow. We’ve stopped being so threatened by that and take it in our stride. There are some awesome people out there with intellectual disabilities. Being mistaken for one of them at times isn’t the end of the world. This is part of what it really means to be inclusive and to believe that people with disabilities are still people. If you think you’re comfortable with and inclusive of a group but are mortified if someone mistakes you for one them, then you’re a long way from walking your talk.

(I’ve seen this a lot, where the act of reaching out and connecting with a marginalised group is supposed to reflect well on the generous supporter, and it’s really all about their needs. They love to be seen as inclusive and brave but it’s nothing to do with equality. Try mistaking a mental health worker for one of the clients and see how thin the veneer of their ‘community’ is as they jump to assert their true status. This is doubly offensive if you’re there as one of the clients!)

Of course, threat doesn’t just go one way. An inner 14 year old who has figured out that their body is adult and flirts with scary drunk men has learned a powerful way to scare and punish the rest of a system who are constantly trying to suppress her. (ask me how I know this!) Kids get scared by their inner adults who are angry, powerful (but not all powerful) figures who feel they are more real, more important, their needs paramount, and their ideas about life decisions the ones that should happen. Kids don’t just get out voted, they often don’t get a vote at all in these systems. Imagine the sense of threat that comes from having other people who don’t like you, don’t care about your pain or needs, and don’t even see you as ‘real’ making choices about your life, your home, your family, and your body. Sound familiar? For some of us, we build our systems on the same dynamics of family or school, the world we grew up in, and sometimes that’s a terrible thing.

Systems that are structured on abusive dynamics, as mine was, deal with the fall out of that. The most powerful might win all the time out and decision making, but the alienated rebel, undermine, sabotage, manipulate, seethe with resentment, or submit and hate themselves. Those who have no choice or overt power protest in passive aggressive ways and behave without dignity. The traumatised stay locked in severe trauma, the isolated express pain and loneliness through symptoms such as phobias, nightmares, flashbacks, tics, and sickness. This is often what we call DID or multiplicity, when in fact it’s a normal response to a really abusive system. Multiplicity with a healthy use of power internally looks very different. It often doesn’t even fit the diagnostic criteria for DID, and we have no alternative framework or language to describe it.

With time and gradual connection, there’s more empathy and less dehumanisation. With this has also come a sense of protection and responsibility. As we’ve learned to unpick our sense of shame about our inner kids we’ve found it easier to understand and interact with them. Long ago, pre diagnosis for myself, I was reading about multiplicity because someone close to me had been diagnosed. I read about a woman with multiplicity who registered that the other patient she saw in her therapists waiting room was also multiple. She gave the shrink a gift of crayons to pass along. When I read that, something deep inside me burned with fierce desire. I wanted my own box of crayons, my own signal that this was okay. At the same time, the iron fist of suppression, refusal, denial locked me down. I absolutely could not do something as simple as buy myself crayons, because that was opening a forbidden door. It was years before I bought a packet of crayons and a colouring book for us, and it was for us, like each step on this road, an act of courage and faith. So very simple, looking back, but so profound and needing such bravery to be willing to face what came up, to trust that there would still be life and hope. When we started Bridges, the face to face group for people with dissociation and multiplicity that we ran weekly for 2 years, we brought crayons and paper to every meeting, trying to pass on this gift.

How simple it has turned out to be, to understand that we’re all sailing in the same ship together. To find joy in the differences between us. Everything we read was about coming together, becoming more like each other, finding a common ground and merging into it. Everything we’d tried was about drawing a line that defined who ‘Sarah’ was and only allowing out those of us who fit within it. Peace has been the opposite process for us. Letting go of that attempt to control who we are and accepting who is here. It’s okay if people get very different ideas about who Sarah is depending on who they meet first. We lead the way by being okay with it ourselves, and most people simply follow suit. We had a house-guest here for a few days this week, who quietly observed to Rose – “Wow, it’s like Sarah’s a different person. I didn’t think she’d be the kind of person who games (first person shooters, by preference, particularly L4D2). There’s a photo of a pretty butterfly on one of her computer screens, and she’s killing zombies on the other!” To which Rose responds “yeah, I see what you mean. Some people are like that!”

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

One of the weird days

Yesterday was one of those blah days where nothing feels like a good fit. I tried lots of approaches, none of which helped, and shrugged, headed to bed and figured I’d feel differently after a sleep. Well, I was right. I had intense nightmares, of the kind where you wake up and feel so distressed you want to throw up. The content lingers like you’ve watched a vivid, personal horror movie that’s burned images into your mind. It’s been awhile since they were an issue! This morning was meltdown territory as a result, panic and intense dread. I took a bath, read some book, wrote in my journal, and scraped myself together enough for my appointments. Today was admin appointments, getting stranded with a vehicle that needed engine oil, and having a blood test – STILL no bad reactions, even on a horrible day like this one! Did, however, re count my days when I got home and discover I’d done this one a couple of days early by accident and will have to repeat it. Sigh.

I saw a disability employment person and cried about how stressed I feel about my business at the moment, wondering if I should be pursuing employment instead. She ‘reassured’ me that I wasn’t passing up some wonderful opportunity – most people like me with an episodic illness are unable to find good work. We get casual, short term, poorly paid work, issues with workplace bullying, and more often than not – contracted volunteering. So if I’m going to not get paid (or paid well enough to survive) and lose my job every time my health wipes me out for a month – I might as well be running my networks and continuing to build my business. Right? The anxiety levels have been tremendously high about it lately, I think trying to get pregnant is sending me into panic mode a bit. It a hard road to walk sometimes. And a brutal reality to face what my openness about multiplicity and psychosis are costing me – and what they cost millions of other people. I hate this.

On the plus side, I’m continuing to clean the house up (it got a bit swamped over Christmas, plus I need to make room for a guest and also Rose moving in soon), keep the garden alive through the heat, and sort out food and meals.

I feel way better than I did this morning, but still ‘off’. unsettled and not myself. Haven’t settled into the new year yet. I don’t have a sense of being on firm footing. I’m picking up on other people’s feelings, seeing the world through many different eyes (but not ours) – perspectives of friends, authors of books or articles I’ve read, proponents of particular ideologies. I move between them feeling the clashes and contradictions like burning places in my mind. Hot and sparky. Then I feel myself move back from all of them and suddenly nothing seems real. I find myself walking outside of my home and looking at a tree thinking – ah, there it is. Reality. The thing beneath all the theories. I feel slightly swamped and detached at the same time. And oddly lonely. Part of me is waiting to find out if I’m pregnant and it’s impossible to feel much about that so I’m not feeling anything. Not even numb, just like I’m holding my breath. I can’t breathe or feel again until the cycle ends. Last month I actually felt pregnant some of the time. This time I don’t at all. I don’t even feel like I’m completely here. Man, these reactions are unpredictable!

Ticking away in the back of my head, as always is the book. There’s always more reasons not to write it than there are to write it. I feel like I’m slogging through a thicket of brambles each and every time I just sit down at a keyboard or notepad and work on it for an hour. I don’t want to put myself out there as some kind of leader. I don’t want to present myself as an expert or have people follow my advice. I am aware – like most people who deeply investigate a topic – of the truly mammoth amount of material I haven’t yet read, ideas I haven’t digested, communities I can’t possibly represent. I hate it. I can’t do justice to the field. The only thing that keeps me going is reading what’s already out there and realising how huge the gaps are and that even my pitiful efforts are an improvement on some of the rank dogma that is messing with people’s lives. But hells, it’s hard to remember that.

So, here’s to the weird days. The not recovered, not perfect, not trying to lead anyone anywhere days where despite feeling like my brain is not entirely in this dimension I’m still a decent and useful human being. The biggest crisis today wasn’t even mine, I’m a support person in the backdrop of someone else’s rough time. (we have an extra house guest on our couch for a bit) I’m still needed and still loved and we all half limp half dance along together I guess. Missing my friend Leanne like hell. Signing off from the Colony. (she would get that, we used to write. My place was the Colony and her’s was the Outpost. All the shorthand and in jokes that die with a friendship.) Just breathing.

Ink Painting – Waiting for you

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A new ink painting! We’ve started our second cycle of trying to get pregnant today. The mood is optimistic about our house. We’ve been cautioned and chastised a few times since we started on this path about how openly we’ve chosen to share our experiences. Each to their own of course!

I was talking with Rose about this again recently and asked her if it was harder or easier to experience loss or disappointment in secret? She said, for her, it was harder. Secrecy bred shame, layered confusion into relationships where people didn’t know why she was reacting the way she was, it left her alone in grief. Personally, that’s certainly been my experience also. When it’s chosen as a preference, it’s privacy. When it’s imposed by others, by culture, by friends or family who don’t want to talk about it, then it’s something else much more lonely and painful. As with so much of life, it’s about having the freedom to choose. I’m glad to not be alone in this.

Home Again

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Home again safe. My sister drove to Melbourne with me (interstate, about a nine hour drive) as for Christmas she gave me a ticket to see Nick Cave. It was a great concert and trip. We drove home through the Grampians, got bogged once in soft sand and spent the night there, but dug out this morning and headed on. I missed Rose like crazy, and it was strange and painful to be dealing with our first finished cycle apart. But it also kind of worked. We both did our thing and came back together at the end. Cave was perfectly timed, reminding me that I’ve never sought a life that’s less painful, I’ve always wanted a passionate life. To be deeply alive.

I hurt like crazy and went down into that and came up again to find myself feeling deeply contented.  We drove through bush, slept under stars,  did a lot of thinking about and writing for the book, and a lot of gentle sitting with my own headspace. Something in me runs free when I’m out in the bush. I’m very lucky to live in this country.

And home again, to beautiful Rose, and a long shower, and my own bed, and the animals. Glad to be here, glad to be alive.

Schroedinger’s Uterus

A friend joked that I currently have Schroedinger’s uterus – I may or may not be pregnant. That’s exactly how it feels. I ovulated 7 days ago. Sometimes I feel pregnant. I’m queasy, my nipples are tender, and there’s a slowly kindling sense of hope that we’ve been wildly fortunate and conceived on the first cycle. A deep peace settles in my bones and all the noise and fuss of life goes quiet, like someone has closed a window on the traffic noise. It’s beautiful. Other times there’s nothing there, no sense of a presence, just an empty box, an egg timer with no sand in the glass. More painfully, sometimes there’s the fear that a tiny life was present that has gone or is fading. I find myself talking to it and begging it to stay.

I’m busy at the moment, following up all the wild interest in the Hearing Voices Network. I’ve been to conferences and workshops before where there was this huge surge of potential connections afterwards (although that’s not always the case) and I was too shattered from the travel and my own crash following it all, and my anxiety about putting myself out there to follow any of it up. This time I’m determined to ride the wave, write back to every email. follow every lead. But although I’m busy I also feel like I’m not rushing. There’s this even pace, nothing frantic, a kind of quietness. My head is full of network and plans and new friends and book drafts. But beneath it all I have one ear cocked towards the shadows, listening for my baby. Are you here yet? Are you with me? I love you. It’s like working in a house on the beach, listening to the roar of the ocean and always quietly alert for the tide to bring something in, for the waters to rush back into the darkness and leave something precious glistening on the shore.