Heartache

Yesterday was really hard. Rose and I are both tired, busy and stressed. Our first scan is in about 13 hours. It’s so important. This is where we find out if there’s a baby in there or if we’ve already lost them, if they’re growing in the right place, if their heart is beating strong, so much rests on it. We’re scared, and trying not to be, so we’re flat and depressed instead.

Admin was horrible. After 6 calls and an hour on hold when my call to welfare dropped partway through I actually screamed in frustration. The college work load is scaring me. I have to keep reminding myself that the assignments are for visual arts students, not english student – they are not nearly as difficult to write! It’s not as hard as I think it’s going to be. The standards are not as high as those I set myself.

Dreaming intensely at the moment. Feeling raw. I’m reading about life with small children – you’re always tired, you never get time to do your hair, forget about finishing the housework, and you permanently smell of soured milk. With the exception of the last one I feel like I’m ready living that! Does that mean it will all get way way worse, or does that make it an easier adjustment? Don’t answer that.

Everything that feels monstrous and impossible now will feel like the smallest of bumps if the scan goes well tomorrow. I know that. I’m just deeply, gut wrenchingly scared. That’s okay. This is what it is. It’s a tightrope or a narrow ledge. I can touch life with one hand and death with the other. We’re used to having a little more room to breathe between them, but this is the road we’ve chosen. Bitter-sweet, painful, beautiful. My heart aches and aches.

8 Weeks Pregnant

Wow. We have our first ultrasound in a couple of days. If that goes well and there’s a heartbeat and a bub growing in the right spot, then we are through the worst of the woods! Down to a miscarriage risk of 1.5 – 2.4% (depending on the study). Very low, anyway!

At 8 weeks, the little one is about the size of a large raspberry. This week they transition from being called an embroyo to a fetus – this reflects the change in its growth. Embryos are figuring out all the different cell types they will need – brain, muscle, nerve and so on, and grouping them into what will become organs like the heart, lungs, liver, and forming arms and legs. The fetus has the building blocks in place now and is grow grow growing them.

This week they’re starting to grow fingers and toes, little webbed stubs. Eyelids have formed, and they will probably be taking their first little tastes of amniotic fluid. They’re growing fingerprints.

I am a huge pain to live with currently. Food aversions are driving me a bit crazy. I’ve been obsessed with salads until yesterday. Now I can’t stand them. Yoghurt is back on the eat list. Meat is off it, fruit is on it, potato salad I can’t even think about without getting queasy. Nuts are off but peanut butter is on. I’m driving myself crazy. I felt ill and off colour all day today. Rose woke up to me sobbing from nightmares and came home to me sobbing about a parking fine. I seem to have only two modes currently; ill and weepy, or ranty. Rose however is the one doing the throwing up, due to her fertility meds. We went out to a fringe show tonight and my poor love threw up in bins all the way back to the car and then in the garden when we got home. It’s hard to tell which of us is pregnant some days!

I’ve been reading about risks and options and stories from other mums about miscarriage. One thing really struck me – a woman saying that all this advice to not tell anyone until you’re through the first trimester meant that when she lost her baby she had no idea about it, no preparation, no knowledge of the options, no stories from friends she could draw upon. That’s in my head a lot at the moment, this idea of taboo and silence and secrecy and what it does to us. If you need any information, I recommend the Miscarriage Association they’ve got clear info and links to real experiences. The Heartfelt foundation are also screening a film here in Adelaide this Friday night about pregnancy loss.

Waiting for our scan. Holding my breath until we hear that heartbeat.

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

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.

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.

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.

Trying to get pregnant

Trying to get pregnant is weird. Coordinating with our donor when we didn’t get any warning about ovulation was quite challenging. We pulled off three inseminations over the last three days. Don’t talk to me about making sure the stupid cup lid isn’t cross threaded and leaking! I’ve spent a lot of this weekend feeling exhausted and lying around with pillows under my bum. I’m off my antihistamines and feel like I’ve been left on an ant hill. I’ve got big patches of zinc cream over missing skin. The fricking soles of my feet are so itchy I could happily shred them over a cheese grater. I can’t remember what I’m allowed to eat or drink. Rose randomly does things like poke me in the nipple and ask if they’re tender (they are now!). I can’t tell and I suspect if I knew all the symptoms I’d have them just out of general hopefulness. Trying to get pregnant is moving, beautiful, strange, funny, irritating, and icky. In so glad we’re doing it at home instead of through a clinic where it’s just another medical procedure. I’m already finding that aspect stressful, being able to go with things and play music and talk baby names and cuddle and have a chocolate or whatever we feel like together is so much nicer. Every sign of possible pregnancy seems to be uncomfortable, icky, or inconvenient. I just realised this morning that I didn’t start the martial arts course I was interested in yet, so I’m not allowed to now.

I wish I owned a vacuum cleaner, there is so much pet hair in my unit. Rose offered me one for Christmas, which I turned down because it was unexciting, but now I’m wondering if looking a perfectly good gift vacuum in the mouth wasn’t a stupid idea for a possible mum to be. Rose’s work are playing an exciting game of seeing how close to Christmas it can be before they tell us if she has a job. It’s like playing chicken with a small creature on the road, running it over or swerving at the last minute, and laughing at it because it looked stressed. She’s applied for about one billion others, but the ones that short list her are all out in the country… Work are also docking her pay randomly, apparently for overpayments they don’t specify. We’re pretty sure this is illegal but the payroll department seem to get away with it by not answering their phone or returning messages.

I’m really tired. Thank gawd college is over for the year. I’m going to go bathe in vinegar before I take off any more skin. I may or may not be pregnant. I am definitely itchy and bewildered.

I’m ovulating!

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OMG. You’re supposed to get a couple of days warning, but apparently I don’t. This would of course be on the day that we have 3 people coming round for cards and dinner, and are babysitting a very little person until midnight. O.o Currently figuring logistics out with our donor. Oh gods! Eee!

The long wait

I’m off all the hormones now, counting days and figuring out how to track ovulation. It does seem to involve a fair variety of things to lick, pee on, and other odd behaviour. Yesterday we picked up an ovulation tracking kit. We sat in the van outside the chemist reading all the instructions together and Rose asks me ‘so what method do you think you’ll use, peeing on the stick, or peeing into a cup and putting the stick in it?’ I attempt to explain with dignity that I have limited experience in peeing onto or into anything but shall practice.

Rose and I are desperately excited and also daunted about how challenging this could be and how long it could take. It’s kind of hard to be rational, I feel like I’m either going to pregnant the first month, or not for a year. I can’t make myself believe it might be, say, month 4. We’re preparing for a trial run of inseminating with our awesome donor in early December. We’re also going to get a blood test on day 21 of my cycle to double check I am ovulating.

Rose is sick again, her psoriasis makes her terribly vulnerable to these awful ear infections. Each time she uses antibiotics she’s at more risk of developing an antibiotic resistant strain of the bacteria. Apparently she’s also increasing her risk of knocking her skin bug balance out badly enough to wind up with a fungal infection in there too, which is what the doc reckons has happened this time. She started getting better after going onto the antibiotics then a day later went downhill badly. So her face and neck hurt like hell, her jaw is stiff, she’s weak and sleeps all the time. It’s kinda scary to be honest! I miss her when she’s like this. She slept over last night when the locum didn’t get to us until almost 1am, and I loved the way she reached out in her sleep or held my hand whenever I rolled over.

Everything’s become infused with this last glow… We talk about Christmas thinking it might be our last without kids, we have a lie in on Sunday mornings and tell each other we should soak this up while we can. And the possibility of months or years trying is something we try to adapt to, but every time I say it to myself, something small inside me squeaks like a squirrel that’s been kicked and curls up into an unhappy ball. We had a chance to visit a birthing suite at our local hospital and it was pretty cool, very different to a delivery suite, large and comfortable with a big bed and a spa for soaking in. It was really exiting and a bit frightening. I felt a long way away from my own territory. I’m doing my best to give myself lots of space to process things before they happen. I’m hoping that book writing will give me a project to focus on while we try.

I’m not quite back in the zone I had going for work before the surgery yet, still struggling to walk far or eat regular meals, and work is erratic because college stuff is due next week and Rose is ill, not to mention I’m behind on housework. Between the surgery and choosing to link my mental health work to my face painting, I’ve scared off about $2,000 worth of work in the past few months, compared to this time last year. I’m expecting that loss to double by the end of this year. That’s sad and hard, but hopefully as I pick up more mental health work it will be worth it. It has been really nice to be in less physical pain from all the painting than I was at this time last year.

Life goes on hey.

Preparing for the death of a child

Rose and I are closer to starting to try for a baby. I’m down to 1/4 of the dose of hormones that keep my endo and adeno under control. We have a wonderful donor on board. I sleep at night cuddled up to a full body length pregnancy pillow and rub oil into my tummy to prepare dry skin for being stretched.

Hope and hopelessness grow in equal measure. “With dreams of a bright future comes also the dread certainty of loss.” You can try to ignore it, stuff it down, run from it, but it will speak to you in nightmares, it will wait for you at 3am, it will shiver in your bones and be a scream that only you can hear, beneath the humming of the world.

So we turn, and sit, and face the unthinkable thing. We are trying for a baby, who may die. Three weeks alive, or 6 months, full term stillborn, early death, accident, terminal illness, disappearance, suicide. To love on this earth is to open your heart to the guarantee of grief. My darling Rose has suffered the loss of six pregnancies. Each deeply desired, dearly loved and hoped for. Each child dreamed of and nurtured with everything that she had. Sometimes love is not enough.

Rose and I have struggled with grief. We’ve had very different needs and approaches and experiences, and this has torn us apart at times. We’ve navigated the loss of friends to suicide and sudden death, the anniversaries of miscarriage, loss of friendships and relationships dear to us. We’re been given many shadowed days to begin to understand each other in grief, to sit with the terror, and start to find our own ways through. We have often grieved alone. Grieving together with a partner or in a family is different. Denied grief, overwhelming grief, grief that shatters lives and tortures the mind is something we’re both familiar with in different ways. We know we’re vulnerable.

Everyone is vulnerable. Our culture often isolates the grieving. We do not speak the names of the dead, we do not know what to say, we visit avidly in the first month and when we’re most needed in the 6th month when the shock has worn off we’ve moved on to other pressing matters. We’ve pathologised much of the process of grief, and presented ideas of joy and sadness as being opposite poles a spectrum rather than separate, legitimate, and overlapping responses to life. Ask anyone who has lost a close friend the same week they gave birth to a child. Ask anyone who has fled an abusive relationship and grieved the loss of their hopes just as intensely as they experienced joy in their freedom.

You cannot ever be really ‘ready’ for loss, because when we think of this idea of being ‘ready’ we picture someone who will be unaffected and unchanged. This is not how grief works, any more than it is how love works. It changes everything in us and in how we see our lives. Some things suddenly become meaningless while others are lit up in the most intense way. You cannot be ‘ready’ when this is what ready means to you. But you can certainly be set up to fall hard. Beliefs such as ‘if god/the universe takes my child away it’s because I was not going to be a good parent to them’ will cause terrible suffering.

The way losses are explained can ease or deepen pain. Rose was once told by a doctor “your body is killing your babies, we don’t know why” which left her distraught and suicidal, with terrible self hate and conflict. Later on, coming across many other explanations for miscarriages, including things like “sometimes there is a problem and the body cannot sustain a pregnancy” or “sometimes babies are not put together right and they die early”, there were other ways to understand what had happened that were not personal and didn’t indicate intent to harm.

Not so long ago my sister’s beloved little cat Kiki died suddenly. It was horrible and a huge loss to her. It brought to mind our families rituals of grief around pets. Whenever a pet or rescued animal dies, we’ve always buried them in our yard. Sometimes wrapped in a cloth or placed in a box, but always in a grave that’s filled with flowers and leaves from the garden.

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Kiki’s grave before burial

We don’t permanently mark the graves, although we do often place rocks or tree stumps over them to keep them undisturbed. The gathering of the flowers has become a very gentle way of returning the bodies to the earth, of connection with the cycles of nature. Pippi and Tessa, my darling rats, were buried under winter lillies. Charlie under autumn leaves and the last of the roses. Kiki under snowdrops. There’s something much gentler about heaping earth onto the plants instead of directly onto a body.

Rituals and other things that mark the loss can be deeply important but also difficult to come up with in the shock of grief. Having a history of them can give us a connection to other losses that’s both painful and encouraging, raising past pain but also reminding us that this is part of life and that there will be new joys.

In early miscarriage there’s often the challenge of not having a body to bury. A ritual such as placing flowers, visiting a tree, lighting a candle, or choosing a date to remember the ones who died can all give a ‘home’ to the grief. In infertility, likewise there is no defining moment or ritual to share. When a previous long term relationship of mine became abusive and broke up, I grieved the children we’d planned together, but I grieved them silently and alone. Grief consumes us with loneliness when we cannot share it, and without a place, date, or name, we don’t have the language to.

People have found ways to work with this. I named the child I’d been planning for and wrote them poems. I lit candles for them when I felt them near and the grief was strong. Rose and I are collecting two lists of baby names, one for living children, and one, pretty but impractical, for any that die. I’ve found an Australian Not-for-Profit called Heartfelt who provide cameras and other services to families who’ve had a stillborn or terminally ill infant. I’ve come across other unconventional ways to mark loss such as this photoshoot of a wedding prevented by death of the groom to be. I’ve read about death and loss and grief, and watched heartbreaking documentaries such as Losing Layla and the follow up Regarding Raphael. I’ve come across instructions on arranging the funeral for a baby, and how to get a certificate acknowledging the loss of an early pregnancy. I’ve found a local funeral company who are creative and flexible and offer home funerals, The Natural Funeral Company.

We’re still not ready. It’s not possible to be ready. But it is very possible to be in denial, under-resourced, inexperienced, and paralysed by fear. That, I’m determined not to be. Grief can destroy relationships. Rose and I hope to journey together, without regrets, whatever the outcome. We walk into the future, full of hope and fear and love, death in one hand and life in the other.

Endometriosis & adenomyosis 1

“Extensive and severe” are not the words you want to hear when a doctor gives you a new diagnosis. Frankly, I personally feel that I have reached my quota for diagnoses, and that if anyone wants to give me a new one, they should have to trade in an existing one. Pick a card, any card… Sigh. So, I’ve been having as bunch of tests over the past few months to check up on my fertility. I’ve already been diagnosed with mild endometriosis, and donor assisted conception can be wearying for both families involved so we wanted to do all the checks we could and get any treatments needed before wasting a lot of time trying to conceive if there was a problem. So far a lot of the news has been good; I have healthy ovaries and lots of eggs. A few weeks ago Rose and I received the news that I have severe adenomyosis. It’s a bit hard to process, and I find it harder to share about physical illness and disability than I do about my mental health, so I’ve sat on it for awhile.

On the one hand, having a name for it makes no difference to what I’ve already been living with. On the other there’s a huge weight of sadness and fear. Perversely, there’s also a sense of vindication. I was frequently ignored and had my terrible symptoms downplayed by medical people and others, especially as a young woman. It was devastating and made me feel profoundly alone and overwhelmed.

A crash course in the conditions, not for the super squeamish. The womb has three layers, the outer one is muscle, then there’s a layer of tissue, and lastly the inner layer which is called the endometrium. This is the part that grows and swells up ready for a pregnancy, and then sheds and bleeds every month as a period. A healthy endometrium is essential for a fertilised egg to implant (that means link up to the womb via the umbilical cord) and be nourished and grow. In endometriosis, (endo) little patches of endometrium grow elsewhere in the body. Most commonly they are elsewhere in the pelvis, such as growing on the ovaries, intestines, and other organs. More rarely they are elsewhere in the body such as the lungs. It is very rare, but possible for men to have endo.

Nobody knows for sure how or why these patches occur. They’re like weeds, growing all over the place where they shouldn’t be. The big issue is that they try to function like the endometrium does, every month they swell up and then shed blood. This blood doesn’t drain away the way a period does, so there can be issues with pain and infection, and sometimes they can chew into places such as ligaments or patches of nerve cells. They can cause fibroids and adherence where tissues glue together, such as sticking the ovaries to the pelvic wall, which can cause worse pain. If the affected tissues are delicate areas such as the fallopian tubes, endo can compromise or destroy fertility. It’s also common for the extra blood loss to cause iron deficiencies. Endo is usually diagnosed through a laparoscopy, a surgery where the gut is checked out with cameras through small holes in the skin around the belly.

Treatments for endo are more usually about managing it rather than curing it. There’s a range of options from surgical removal, using hormones such as the Pill to prevent periods and therefore stifle the endo growth, dietary changes and so on. Some people find some approaches way more effective for them than others.

Adenomyosis is similar, in that again it’s the endometrium cells growing where they shouldn’t. With adeno, the endometrium invades the tissues of the womb itself. Pockets of endometrium cells swell and bleed into the tissue. In severe cases, all the womb is affected. It’s swollen and heavy with the pockets of extra cells, there are issues with pain, excessive bleeding, and cramping of the muscle layer. In some cases the adeno prevents the clamping down on blood vessels that supply the womb, causing chronic pain and bleeding problems. With severe blood loss, the body struggles to replenish the supply of red blood cells and severe anaemia can result. There’s only currently two ways to diagnose adeno: one is performing a hysterectomy, that is, taking out the womb, and then examining it. This is obviously not appropriate for young people or those hoping to have a child. The other is through an MRI scan, which is not quite as conclusive, but gives a lot more information than other scans such as ultrasound.

It’s only been fairly recently that adeno had started to be diagnosed, so not very much is known about it and sources of information are conflicting. It may increase failure rates of implanting embryos, miscarriage, preterm labour and other fertility challenges. Treatments are very limited, in some cases surgical removal, or hormone blocking to shrink the growth – sadly this only has a very temporary effect. Three months of hormone blocking will provide about three months of adeno-free cycles.

Both endo and adeno usually respond really well to pregnancy, and it used to be common for daft doctors to suggest pregnancy as a management tool. This is partly how the hormones help -they mimic pregnancy in the body and when taken continuously (without sugar pill breaks for ‘periods’) they suppress the growth of each. Both endo and adeno can be odd in that how severe they are and how bad the symptoms are don’t always line up. Some people with severe endo have few or no symptoms while others have mild endo but suffer terribly. The location of the endo may have something to do with this – for example endo that chews into areas with a lot of nerves may cause a lot more pain than endo in areas without many nerves. Some people have awful periods and problems with pain and no clear cause can be found, which can make figuring out a treatment incredibly difficult.

So, we have no way of knowing how the adeno may impact our baby plans. I’m having a lot of trouble with experiences of severe depression when we make even minor changes to my dose of hormone to manage these conditions, so at this stage we’re avoiding the hormone blocking treatment because I think my head might fall off or spontaneously combust. We’re tailoring my dose down carefully, hopefully in a couple of weeks I’ll be completely off the pill and ready for my first cycle! I’m taking iron supplements already as the severe bleeding leaves me badly anaemic, which is not good for me and particularly not good for a developing baby. We’ve also made the call that my efforts to be restored to a ‘natural’ cycle at some point are pointless – when I’m not trying to get pregnant I’ll be using hormones to keep these in check. The longer I’m off the pill the worse the symptoms get, so we’re hoping for a 6 month try at pregnancy then we’ll re-evaluate. We’ll be tracking iron levels pretty closely and if I’m lucky I’ll get pregnant quickly before the adeno makes it impossible to work. If I’m very lucky I’ll also have a good pregnancy! Lots of unknowns, but a little more information than we had before. And certainly all worth it for the chance at being a Mum.