My Nana has passed away 

I’m home, by myself, in bed. Feeling the week wash out of me like the tide. I curl into my cocoon while the world goes on without me, and do the only things that make sense right now; sleep, think, and write. My daughter does the same within me, sleeps, stirs, dances, dreams.

All her great grandmas have now died. My Nana lived overseas so I won’t  be able to attend the funeral. I sent her a letter in the last days to tell her that she is important to me and I loved her. I haven’t seen or spoken to her for many years. I lost all the relationships with my father’s side of the family when I lost my relationship with him. Family tears apart down bloodlines and homeless with my mother, I had made my choice and thrown my lot in, not with sides but with individuals I loved and knew and felt responsible for. All the broader connections of family in my life, fragile and stretched by distance, by my own illness, by lack of understanding around sexuality, by communication being filtered through people who told only the stories they wanted heard… All of them fell away and I plunged into bitter isolation and loss, alone in our tragedy, focused on survival.

So many things divide us. Across the chasm, neither of us reach. There’s too much time passed, too many questions, too much pain, too many bad memories and bitterness and assumptions and loss. I had to dig into secrets and history to figure out the shadows cast forward that shaped our ruin. I had to run from the boxes assigned me to grow into, far too small and the wrong shape for me, far too silent and powerless and accepting of the stories I’d been told about myself and the world. I couldn’t grow within family, within school, within those friendships or that world I’d inherited. I was stunted, lonely, and dying. There was no future for me.

Out in the grief numbed solitude after my world burned, I wrote new rules, told new stories, learned to look at the world out of my own eyes. Grew more tender, more harsh, more strange. The roles assigned me fell away like so much shed skin. My pain and loneliness nearly sank me. I rebuilt very slowly, turning around my damaged valves: I am no longer grateful to anyone for attention: it is a privilege to get close to me. Alone in my caravan I repeated the words over and over to myself. Only letting the special ones in. Breaking all the old rules, as over and over as they crept back into my life. Mourning everyone I had ever loved and doubting everything I had ever believed in and sacrificed for.

Rose, Star and myself are in family therapy. It’s been a good experience. I joked last time that each of us has so much painful history with the idea of family, that we can be badly triggered about ‘family’ merely sitting in a room by ourselves and thinking about it, let alone when we try to relate to each other directly!

I have rebuilt so much. I have trouble feeling it, trusting it. The first two friendships I grew close enough that we told each other we loved each other both abruptly disconnected from me and they’ve never spoken to me since. My grief was intense. I live in a whole world that’s triggered by the idea of family.

I had a dream of one day taking my family overseas and visiting all these strangers and asking the hard questions and speaking the hard truths and finding and giving grace, freedom and connection. Some days I feel strong that way, no longer small and frightened, that I can lead us in a new direction, I can take back what I’ve lost and bridge the gap.

Other days my own bitterness swamps me. I was alone and no one reached out to me. Or  the old roles hang waiting for me – submissive, grateful for scraps, secretive, and wondering what I did wrong to not be loved better, how I could change myself to be embraced. A child among giants. Who do I hate for the pain? The wheel spins and today it is me, tomorrow it might be you. There’s enough pain for all of us. My dreams burned down and body fell apart and I was homeless and did not ask because I could not bear your silence and yet that silence still rings in my ears and I feel the loss like a missing limb. All those people who came to my wedding, that joyful throng, all silent at my divorce, at my poverty and disability. I went alone to the court. I slept alone in the shelter.

Sometimes the distance simply overwhelms me. Blood might connect us but these people are strangers to me. What could they possibly owe me, or I them? Why would they thank me for disruption? Let them be, accept the loss, move on. Build a new tribe and love them instead. People I can share with, even pain. The numbness still haunts me. I try to feel the hugs, on good days I feel connection, I believe that in a few years time these people will still be here, I believe they genuinely care about me and don’t merely feel obligated, I believe I can be loved and also free of tyranny and abuse. There are not very many good days like that. Mostly I keep my focus more narrow – this day, this week. I hope rather than trust. The hand that reaches out hides the tremor. I love from a heart that has scars I can’t heal and memories I can’t forget.

My Nana has died. The woman I’ve been likened to all my childhood, who’s sicknesses and allergies I seem to have inherited along with her creativity, her predilection for grand projects, her impulsive generosity. Almost everything I know about her is through stories. I can’t remember the colour of her eyes, the touch of her hand, or the sound of her voice. We are all only stories, in the end. She was part of my old life, before all the fires and loss and freedom. I’ll get no answers from her now, no absolution. That broken circle stays forever broken. While I try to live my life with some integrity and joy, people get only older, the old shapes of things changes, rain erodes the soil and land falls into the sea. While I debate the timing of the tearing off of old bandages, the breaking of promises and the gift of forgiveness, time passes and each of grows older in our own mirrors. While I wonder if I’m strong enough yet, wise enough yet, while I doubt my motivations and interrogate my impulses, the world spins on, out of kilter, slowly into darkness. One by one, they will die, with or without me in their lives. Those stories will end.

Oh, little frog, what a broken world you inherit. I’ve been far stronger than I ever thought possible and your nest is a safe one. But not strong enough to repair all the harm or bind back together all the brokenness. Three women sleep in your house and nightmares stalk each of us. We each love you and we are each wounded. I don’t have the answers and I don’t understand life. But I love you fiercely and I want you to be free to grow. So I keep growing too. Here in my grief, my stolen grief for a woman I barely knew, here in my bed with my cat on a cold winter day when the week of doing has finally ebbed to a day of being  and following only the strange impulses of my still wild heart… Here I hold you close and try to weave the stories of your family and your roots into a shape you can grasp and grow with, to honour the dead and the living with truth and grace, to show both  the beauty and the shadow, to neither privilege nor ignore blood or the other bonds between people. Precious daughter. There is family here waiting for you, ready to love you. Let that love not be a cage, and let it not dissolve in the dawn. Let it be stronger than the pain.

New life and death

Wrote this earlier in the week – it’s been a hard one between a funeral, a bout of gastro for me, and a lot of other stressful events and appointments. Glad it’s done and to have Rose home again after her quick interstate visit for the funeral. 

We had our beautiful baby shower on Saturday, and woke on Sunday to the call saying Rose’s Gran has died. We are all tired, physically tired after preparing for a big event, and emotionally tired from so many feelings and people and connections. Yesterday Rose went back to the venue to clean and collect the last of our gear, Star cleaned out our car from front to back including the gear ruined by leaking seals in the boot, and I cooked and washed dishes and cleared and reorganised our pantry. I am very sore and very tired, but all the displacement activity has helped ground me. There was sweet beef curry for dinner, a family recipe which was comforting, and a fresh batch of banana muffins for lunches.

It has been a slow, sad day. We three have moved mostly in our own spheres, awkwardly when we are together. Moments of connection are easily fractured by misunderstandings, miscommunication, frustration as words won’t come or fit together right. We are still defining ourselves as a family, defining our culture. I’ve laid a blanket over the day, soothing the anxiety: it’s okay to be sad. It’s okay to be out of sorts. You don’t have to pretend to be anything else. It’s okay to need time alone, to need company, to need both.

Zoe spent the morning jumping up on everyone and constantly wanting to go outside and come back in again. When I woke up I was able to bring some soothing to her energy and we realised she was trying to tell us she was cold. Rose and I packed her bed with an extra wool blanket and a pillow and Zoe settled at once. I could only be soothing because when I woke early this morning, sleep deprived and in pain, it was Rose who wiped away my tears and calmed me back to sleep. Peace and gentleness like a baton we hand between us in relay. And in that peace, all the things we couldn’t hear a moment ago suddenly make sense, like finding the radio station clearly between the static.

New South Wales is currently buried under storms, with the airport half closed and many evacuations in place. We have just learned that the funeral is planned for this Thursday, and we are changing plans and rearranging appointments so that Rose can attend.

But in among all the heavy weight of grief, I want to take a moment to acknowledge our baby shower, which was simply beautiful. We both felt very vulnerable that morning, but our people who could be there embraced both the silly games and the moments of ritual and connection. We were very loved up, and despite lots of sickness and cancellations and worries, it all turned out as good as it possibly could. It’s been a long time coming for us both, and it was precious. We’re in the last months of pregnancy and taking each day as it comes, looking for windows to enjoy it and delight in it between the troubles and discomforts. Celebrating with our tribe was a very important milestone for us. ❤

Looking forward

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I’ve started a new oil painting, about walking in the local park at night, as I loved to do with Zoe before I was pregnant. There’s been a lot of art this past week. 🙂

Tomorrow is our baby shower/blessing way. I’m excited. It’s been a sad week too – both Rose and I are waiting on news as each of us has a grandma in end of life care. In both cases they live much too far away for us to visit, which is hard. It’s strange being happy about the baby shower and sad about death and loss at the same time. Rose and I find ourselves feeling vulnerable and anxious, wanting our people around us tomorrow, a sense of connection to our tribe.

We move between grief and joy, the way I move between pain and pleasure in this pregnancy. One hour we curl up in bed and cry and talk about all the sense of unfinished business. The next we pack baby clothes and games and food for tomorrow, ticking off check-lists and making plans.

I’m soaking up every hour I get where I’m not overwhelmed by pain but can find the tremendous hope and joy in carrying our baby; counting the stretch marks like tide lines on my skin, Rose and I holding my generous bump to feel the baby dancing under my skin. Watching for those moments even if they are brief, knowing they will be gone so very soon and I’ll look back on them for the rest of my life, maybe even miss them at times. It’s been a very hard pregnancy, but not every minute is miserable. There’s beauty here too; hope, longing, and love. Looking forward to celebrating that tomorrow.

IDAHOT Picnic & 28 weeks pregnant

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I volunteered to cut the rainbow cake. I usually do this at family events – I took over from my grandpa when I was a young teen, because he used to do that cut a random size slice and then another random size slice thing, and we’d all pass the slices around the table as he went… thin slices got passed on quickly, thick slices were lingered over like a game of musical chairs but with cake. Inevitably some were deeply disappointed with the slice that settled on them. A quick head count and a little math solves that issue!

IDAHOT is the international day against homophobia, biphobia and transphobia. I waddled up following a morning at the printer and framer putting in the final orders for my exhibition, which comes down this Friday! It was a good, fun event and nice to see friends there I haven’t caught up with for awhile. Rose stayed home and used the time to get lots of homework done on my computer. I stayed out and pretended I’m not possessive and territorial about my computer. I’ve coped pretty well with sharing the rest of my home with everyone else, but my computer and studio (ie table) do bring a slightly crazed one-eyed barky critter out in me.

There was a cool badge maker there so I made this for Rose:
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Pain levels are still very high, I’ve been re-reading Explaining Pain which was a good refresher, but woke at 3am to cry about how hard this is, and sad, and all the wasted years being sick and swamped by pain. Sometimes even the encouraging and helpful triggers such grief and regret. Bubs is head down most of the time, which is causing bad sciatica, hip pain is bad, and heartburn is bad. I have finally put a bit of weight on this pregnancy though, which is great news. Fibro is a bitch, I’m getting bad facial pain, a twitchy bladder (not the same as pregnancy needing to pee every few minutes), muscle cramps in my calves, chronically irritated skin, and fun new sensitivities. I’ve asked for a referral to the psych team at the hospital as I’m getting nervous about how well I’ll recover from birth and worried about being stuck in hospital needing support. The psych team are the only ones who can override the usual rules about partners being kicked out overnight. The prospect of being forced to be left alone overnight in severe pain with our little baby to care for as well as me is a bit harrowing. If anything has gone wrong and I’m feeling emotionally fragile too, hospital is a horrible environment for me. I recall once waking to find night nurse trying to do obs in the small hours of the morning following my appendix being removed. She touched me while I was sleeping and I woke the whole ward with a blood curdling scream and had clawed my way to the far side of the bed before I’d even opened my eyes. When I did I found I was perched on the edge of the bed about to fall/leap out, and the poor nurse was flattened against the far wall. Following that was the slow wail of all the infants in the ward protesting. I don’t know what adding a small baby I feel intensely protective about might do to that reaction but I suspect ‘downgrade it’ isn’t the usual answer.

Baby is growing well, I’ve been doing finger-prick tests and my results are all great re gestational diabetes, and there’s loads of movement and kicks. We’re into the countdown now and I’m looking forward to having more of the house and sheds sorted ready for arrival. In other news, having made us wait an extra 6 or so weeks for our assigned midwife to come back to work, it turns out she’ll be on maternity leave when our baby is due, so we’re being reassigned anyway. There’s a strange sense of hype and disappointment about the whole process with our hospital. We’ve only had two appointments with our midwife so far, the first we spent talking about delivery options and preferences and worries, the second we discovered she’s not going to be here anyway. It’s odd, because I know that we’re very, very lucky to have access to the healthcare we do here in Australia, but there’s this sense of indifference that’s unpleasant, being very small parts of a much larger machine and having very few choices and little power to influence anything. It makes me want to run away and give birth in the bush.

On the plus side though, my appt with the hospital anaesthologist was surprisingly excellent. I’ve never had a good appt with an anaesthetic doctor before, usually they don’t beleive me about my allergies, or they freak out and make me undergo procedures like endoscopies without any. This guy was excellent, he listened, asked intelligent questions, gave me good information about options and how to get the most out of them (did you know gas and air works best if you start it at the beginning of a contraction, count through them, and stop it about 2 breaths before the peak? This allows it time to be effective but lets you ride the last of it without having much in your system for the rest periods, which reduces the chance of side effects). We wound up talking about self hypnosis and he walked me through a short technique for self hypnosis which I took to. It was a good appointment to follow the others with, I felt like there was actually a point to turning up and that in among the grinding machinery of a big public hospital, the endless waiting and being shunted from service to service, there were little treasures of useful information and ideas. Hooray for those.

Guest Post for Sands on Mother’s Day

This year I was invited to write a guest post for Sands Australia for Mothers Day, which I was delighted to do. I decided to share some experiences and photos that I haven’t put on this blog before. It’s been a day that Rose and I have struggled to navigate for many years, so I wanted to talk a little about that journey and how we’ve changed our approach over time. You can find it here; Untold stories of Mother’s Day.

This year, Rose, Star, myself and other friends are away camping for the Medieval Fair, which is very tiring but very lovely.

For all those of us for whom this day hurts or brings up complex memories or feelings, I wish you kindness and gentleness. I hope you find places where it is okay to hurt, people who treat you with understanding, and some compassion towards yourself. It’s okay to grieve, okay to be angry, okay to be confused, okay to ignore it completely. Do what you need to do to find some kind of grace, or peace, or way through. With much love xx

Wonderful Arty Things

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My lovely exhibition Waiting for You is still on display at the Box Factory in Adelaide until May 19. (details here) As I can’t attend every day, I’ve been working on setting up materials that will be helpful to those who couldn’t attend the opening night. Today I finished the final draft of my brochure about the exhibition and had a collection printed, it contains information about me, how the exhibition came about, the artbook Mourning the Unborn, and prices. I bought these stands today, and they are now on display alongside brochures from Sands, all free for anyone. There’s also a display copy of the artbook for people to have a look at.

If you’d like a brochure yourself, Sands have theirs on their website, and I can pop one of mine in the post for you – those of you with orders will get one with your art as a keepsake. 🙂

I’ve also been to the printer this week and placed the opening night orders for art and frames, and the printer there loves my work and has offered to display some framed on his wall, for sale to his customers. How wonderful!

Tomorrow I will be working on a guest post for the Sands blog for Mother’s Day, which I’m very pleased to have been invited to write.

There’s also a review of the exhibition by artist and writer Julia Wakefield, which I feel very fortunate about and will share with you very soon. 🙂

It’s wonderful to see this exhibition/community event continue to grow in various ways beyond the opening night.

Tonight I attended the Healing Voices film and was once again struck by how tremendously important artists of all kinds can be in creating community and bringing issues to light. While many other people did the hard work of organising the screening, artsy people wrote and directed and edited and created the beautiful content that spoke to people. I still lament that there has been no real home for me in mental health locally, but I am feeling great hope and strength in standing on the platform of arts to be part of change in the world. A friend from down south was lamenting the difficult hours that Waiting for You is being exhibited currently, and asked me if I might be interested in finding a hanging space for it in her area sometime. I think that would be a fantastic idea and I am keen to explore other opportunities for the exhibition beyond May.

I’m also quietly giving some thought to World Hearing Voices day coming up later this year and what I might be able to do as an artist to raise awareness and be part of that. There’s a place for me somewhere.

SA Film Screening ‘Healing Voices’

If you’re a South Australian local and interested in mental health, this Friday April 29th is a free/gold coin donation film screening you’ll probably be interested in. All the details in the Hearing Voices Network of SA newsletter here.

First newsletter out in almost a year… Haven’t done one for the DI for the same amount of time. I miss my networks. I wish I could get paid for running them, and wish I had my little team of three to bounce ideas around with… as I’m getting back on my feet and having to pay for domain names being annually renewed and suchlike I’m starting to think more about what to do next and how to support these. Friends came over last night for the most wonderful campfire evening and it was so lovely… and made me miss being able to hang out with my local hearing voices group around a campfire without all the politics and crap about who is allowed to be friends with who… I deserve to be paid for my work, and I have the right to identify as I truly am and be friends with people from whichever category I wish.

I don’t know what the way forwards is yet, but I’m starting to be able to think about it again without being overwhelmed by a sense of failure, anger, pain and loss. Maybe that’s what the Waiting for You exhibition has done for me – given me a sense of having a place somewhere in the world. Maybe I was never meant to live in the world of mental health the way I was trying to build my career. Maybe there’s a home for me in art and a way to do this work that doesn’t exhaust and exploit me or force me to compromise my values. Maybe…

I don’t know. Nothing has worked so far. But I’m learning, through each loss and each dashed dream. I’m trying different approaches. I’ll unlock that door and crack it open a tiny bit, and back away quietly. Maybe some idea will come to me about how to grow these precious networks. Or maybe I’ll find some other, more sustainable way to make a difference in the world.

Freedom & safety for a charged topic

My Waiting for You exhibition opening night is just around the corner and I want to speak briefly about creating safety when dealing with such a painful theme.

For many of us, this is a really charged topic. It’s painful, intense, deeply personal, and may not be something we’ve ever really had a chance to process – much less to engage in a public setting. Breaking taboos can be liberating but also triggering and incredibly distressing. I’m deeply aware of this, because Rose and I are in this place in a very real way, right now. I want to share publicly the same conversations I’m having with her, because I suspect she’s not the only one feeling conflicted. I want to speak into the heart of that conflict because it’s what hurts so badly and makes it so hard for us to talk about these things and know what we need. We often feel pulled in contradictory directions – needing to talk about it/see it in public/bring it to light, and also needing to hide away from it and deal with it in privacy. It can be really hard.

I have taken a number of steps to help the opening night to be a safer space. You can help me with this in how you treat the other guests and yourself. Here are some guidelines and values I’ve set for the evening:

Freedom

  • You are free not to come! I won’t be upset with you if I know you personally. You are not under pressure to attend to support me.
  • You are free to be ambivalent and unsure. It’s okay to decide at the last minute if it feels like a good idea to come. It’s okay to change your mind. Please don’t force yourself to do anything that doesn’t feel like it’s right for you.
  • Free to leave any time you need to. It won’t be ‘rude’ to step out or leave early. No judgement. You’re also welcome to step out for a bit then come back.
  • Free to decide you’d rather attend privately instead of for an open night with other people around.
  • Free to buy something that speaks to you to take home, and free to find the art confronting or disconnected from your experience, and support me in other ways if you want to.

Feelings are okay

  • It will be okay to feel things. It’s okay to cry, to be moved, to remember, to talk about things.
  • It will be okay to feel good, or sad, or mixed up, or lots of things at the same time.
  • It will be okay not to feel things, to be numb, or not in that space, or not public about it.

Resources on the Night

  • Sands Australia will have a representative at the evening who is more than happy to talk to anyone looking for information or support. Sands provides a helpline and other resources around miscarriage, stillbirth, and newborn death. She will also have brochures and information you can take home and look at later.
  • Tissues and friendly people around (my tribe is full of good people) who can give you space or a hug. Some of my friends are champion huggers, so just sing out if you need one.
  • A place to be involved. Rose and I have created a small installation We Love – providing a space for you to participate and recognise your own losses. You can write names or something meaningful to you on papers provided and have a time to reflect.

Art can be powerful. It can bring the private into a public space. It can help us to speak about things its difficult to find words for. It can help people not to forget that behind silence and cultural taboo are real people who need and deserve safety and connection. It can express and share our unbearable experiences in ways that help make them bearable to look at. This kind of art can be a speaking back to silence, a way of documenting things that were erased from our lives and never allowed into our histories and family stories. These things happened. We felt many things about them. They changed us. They are important. We deserve space to share our stories, mourn our losses, and rebuild our lives – without secrecy, without shame. In community; with connection, privacy, and love.

Waiting for You Exhibition is Open

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It’s up and beautiful and ready for viewing! The theme of pregnancy, loss, & motherhood is so special to me. The works are joyful, heartbreaking, raw, and tender. For those who missed my heartfelt radio interview about my experiences of miscarriage and this exhibition, it is now available as a podcast through Radio Adelaide here.

The Exhibition

Open between April 19th – May 19th, Monday to Fridays, 4-6pm.

It’s at the Box Factory, 56 Regent Street South, Adelaide. (map) This is a wheelchair accessible venue. All works are available for purchase.

If you are on Facebook the event details are here.

The Opening Night

Was a wonderful success. 🙂

There were prints and cake because this was my birthday celebration this year. I launched my beautiful artbook Mourning the Unborn. As I was dealing with a charged topic, I took care to create a safer space – read about the values and resources.

Last minute questions about food and kids etc.

My Online Store

Especially for those further afield, I have just opened my Etsy Art Store and begun stocking it with prints from this exhibition, and my artbook Mourning the Unborn. It won’t be quite as lovely as seeing these beautiful gold embellished prints framed and displayed, but you will still be able to see the artworks and buy a regular print yourself.

I’ve turned 33 this year, and I’m glad to use this moment to put my work out into the world, and honored to include everyone it speaks to in some way. ❤

Listen to me talk about miscarriage and art on Radio

I was interviewed recently about my experience of miscarriage, my upcoming exhibition Waiting for You, and the launch of my artbook Mourning the Unborn. It’s a very personal interview and lasts about half an hour, with the lovely Jennie hosting on Arts Breakfast. If you’re local you can tune into Radio Adelaide at 101.5 FM, Saturday the 16th April at 10am.

It’s now available as a podcast online here.

I gave the interview yesterday, which was an incredibly hard day for me. I had a fall the night before going out to a date night with lovely Rose. Walking in the dark I turned my ankle in a pot hole and went down a bit hard. Yesterday baby didn’t do the usual morning kicking, and by 3pm they still hadn’t woken up despite me walking, resting, drinking cold water, and eating something sweet. I got a bit worried.

So, following this interview Rose picked up Star and I and we spent a long evening in the hospital waiting to make sure everything was okay. We’ve just got the last test result back this evening, and everything is looking fine. But needless to say I was feeling a bit raw and don’t actually remember much of the interview itself.

I feel it was very good, true to my experiences and work. It’s also exposing and personal and I feel a bit daunted by being so public. I hope it’s valuable and I’m looking forward to meeting people on the opening night and getting some feedback about this whole idea in person.

23 weeks pregnant and sick as a dog

Rose is sick, I am sick, bubs is doing great. We’re both on antibiotics for bacterial infections (tonsillitis for her, sinusitis for me) and I have been so sick and sleep deprived this week I’m desperately looking forward to feeling better. With my drug allergies plus being pregnant there’s almost nothing I can take to help reduce the pain or get me to sleep and I’m now very worn out. Food aversions are even more severe than usual and I’m struggling to eat and keep down fluids, which is scary and stressful and makes me feel like I have an eating disorder and worry about developing gestational diabetes. Every time I read about the importance of a balanced, pregnancy safe diet and regular exercise I kind of want to scream because at the moment I can hardly walk 50 yards. The sheer misery of chronic pain is hard to overestimate, I cry a lot, I’m very irritable, and I feel completely exhausted. I’ve also stopped sleeping, which may be sickness or may be pregnancy insomnia…

Just when I think I’ve learned all the horrible things pregnancy can bring with it, I stumble across something else. Frankly right now I’m wildly over all of this and feel like I’ve been sold a load of rubbish about what pregnancy would be like. I kind of can’t beleive I actually wanted to experience this, was really excited about it and chose to do it. The lovely moments of joy at feeling baby move simply don’t stack up alongside months and months of being madly unwell. I’m perfectly capable of being really excited about feeling my baby move in Rose’s tummy, thankyou very much. I hate complaining because she’d love to carry, and because people sometimes think that means I don’t want to be having a baby or that I’m not grateful we are expecting. But hell this has not been fun!! Fibro and pregnancy and sinusitis especially are kicking my ass and it’s not fun or exciting or joyful or glowy, it’s just stressful and exhausting and bloody miserable and yes I chose this. Argh!

Fortunately froggie is pretty unaware, kicking away every day, especially in response to Rose singing to them. Thankfully! Our GP got out the doppler today and that wonderful heartbeat, so strong and rhythmic, it’s such a relief to hear. I finally have an appointment to meet my midwife for the first time next week, which is a big relief because the bloody hospital has been confusing us no end with all manner of contradictory information.

I am, as you can hear, pretty overwhelmed. Rose has been superb. Pain overwhelmed me last night and she rubbed my back and talked me through a visualisation where I hadn’t spent the day crying on the lounge, sleepless and exhausted, but instead we went out together on a picnic through the beautiful autumn trees. And the pain stayed there in my body and face but for a little while I went somewhere else, with Rose, somewhere peaceful and beautiful where everything was okay. And I saw the wall I have to jump over to reach that place – grief and hurt for every night I’ve ever spent alone with such pain. But last night she took my hand and I lept the wall and away we ran; into the red and golden leaves, into a place of quiet and promise. Into a world where my body is whole, and we sit beneath the trees by the water together, red velvet against grey stone. Her hand in mine, her beautiful hair snagged with a tiara of leaves. She is my home. She is my peace.

Poem – Terror

I am terrified.
I try very hard not to be.

Everything I build is a bright island
In a black sea
One day
There will be a storm
The water will rise
Or the land will sink
the sun will go out of my world again
not dead, or lost, or drowned
still shining somewhere else
but whatever blessing I was living on
will be withdrawn.

There will be no sense to it.
There will be nothing I did, or did not do.
It will follow no pattern.
All that is bright in the world
will be a memory
everyone I love will die
everything I care about will drown
beneath that black water
life will be unbearable pain.

Over and over again.

1 in 135 births is still born.

Even if the light shines on me
someone else goes home drowning
the simple arithmetic of loss
someone will get their heart broken.
I’m 23 weeks pregnant
and drowning in survivors guilt.
Terrified of the future
And I still can’t talk to the baby.
Oh Job, did it work for you?
Can you really give back children after taking them?
Or did you howl in the bitter hours of the better days too?
Like all of us who love from brokenness.

The sun is shining
and the sun is shining
and I’m not afraid
and there’s no darkness coming

The sun is shining
and it shines for me
because I’ve done the right things
and I’ve figured life out

Nothing bad is going to happen
Night will never fall again
Everything is under control now
Life gives us what we deserve.

How do we live without our lies and illusions?
How do we face the sun when we know it’s dying?
I crawl from my broken place, over to you love
touch your face, and it’s wet with tears too,
kiss your wet face with tears in my mouth
the sun on our faces shining
The sun shining on your glorious face
The glorious sun shining on your tears.

Criticism Fatigue part 2: Criticism is essential

Here’s a fun paradox: as I’ve explored in this first post about criticism fatigue, as a mental health service provider and peer worker, criticism is risky to me, my job, and my organisation. It makes me feel stressed, threatened, and unsafe, and at times it is all of those things especially when it crosses the line into abuse. However, I feel quite the reverse about being able to make complaints. It’s very important to me that my right to criticise is respected and supported. I want to be able to make a complaint easily, without penalty, and to feel listened to, taken seriously, and even see change happen as a result. Being able to criticise limits the power of people and services to abuse and harm me – as a consumer, a carer, or a peer worker. Being able to criticise helps me be safer. But receiving criticism threatens that safety and wears me out. How do we manage that reality?

If I believe that consumers deserve to have a voice, which I do, then I believe that criticism must be part of the process of service provision. If I believe that staff deserve to be safe from abuses by consumers or other staff, which I do, then I believe that criticism must be part of service delivery. If criticism is so essential, maybe we need a better approach to it in services – something that makes it less threatening and less risky.

Let’s look at the bigger picture for a moment. Criticism can be conceptualised as a form of ‘feedback’. Feedback is the process of sending a message back after an action, to modify the next action. It’s a form of communication, and it is incredibly important to the functioning of all organisms, eco systems, and structures made up of smaller components. This is moving into the territory of systems theory, a fascinating field of study that explores the relationships between individuals/units/components within a larger system. The nature of feedback is that it creates regulation – it gives information about the effect of an action so that future actions can be modified to achieve the desired result. Without feedback, there is no regulation, and without regulation, function and survival are threatened.

In relationships between people, feedback is essential to connect and to pursue goals. Feedback in the many complex forms of signalling contentment, distress, praise, criticism, and so on all set the boundaries and define the power balance in the relationship. 2 way feedback means that these signals can be sent and received by both parties in both directions – person A can tell person B when they are comfortable or irritated or hurt, and person B can do likewise with person A.

In systems where this feedback is inhibited there are higher risks of problems. If a consumer can’t complain to or about a staff member, they are less likely to be consistently engaged with in ways that meet their needs and don’t hurt or frustrate them. If a staff member must not have complaints made about them/their services then they are under pressure to meet consumer needs without being able to clarify when their efforts are not effective, and without being able to take risks that may not work out – bearing unfair responsibility that presumes mind-reading and infallibility. If a staff member can’t complain about a consumer but the consumer can complain about the staff member – or vice versa, there is a significant power imbalance at play that can allow harm to happen to the more vulnerable party.

Criticism is also essential in a less personal sense – we need to criticise services, resources, ideas, ideologies, approaches, politics. In a similar way that feedback regulates relationships, it regulates ideas. It is not possible to create anything that is perfect, static, unchanging. The most elegant and beautiful idea can be misconstrued, misapplied, inappropriate in context, overcomplicated, oversimplified, accidentally destructive, and deliberately twisted to cause harm. It is not only appropriate but essential that we debate, discuss, and explore our ideas. In the case of services we need to hear from all people. It’s not good enough to say – well ‘most’ people find this approach helpful so we don’t have to listen to those who find it harmful. It’s not good enough to assume that good intentions will prevent harm. It’s not good enough to create highly risk averse structures to prevent criticism and then take the lack of criticism as a sign that all is well.

Criticism is part of learning. It is a signal that we have made a mistake, and propels us to greater understanding. As Bradbury colourfully put it in Fahrenheit 451

You’re afraid of making mistakes. Don’t be. Mistakes can be profited by. Man, when I was young I shoved my ignorance in people’s faces. They beat me with sticks. By the time I was forty my blunt instrument had been honed to a fine cutting point for me. If you hide your ignorance, no one will hit you and you’ll never learn.

Criticism is also inevitable. Do anything at all in life and you will have critics. Some you need for their useful ideas and input, and some are just the price you pay for being active. Criticism can help to expose you to ideas, experiences, and perspectives you could simply never personally gather in your own lifetime. My experience of setting up resources in mental health and doing consultation to garner what is most needed, where the gaps are, and the best use of resources has been that getting that information in advance is often very difficult from more than a small portion of the community. However, once a resource is running, criticism will abound if it fails in some way – and the resource can then be modified in the light of that. It’s often difficult for people to articulate what they need until they’ve started to see some options (show me a menu! I don’t know what to order) or started to have some experiences (this bit was great, that bit made me really uncomfortable). It would be a whole lot more comfortable for me if I could gather that information in advance and set up ‘perfect’ resources, but that’s more about my fear of criticism than it is about the back and forth of real community engagement. Accepting and being willing to engage with criticism has worn me out and led me to struggle with criticism fatigue, but it has also honed my ideas, challenged my ignorance, and made my resources better.

Criticism is also inevitable because of the massive diversity in people’s needs, values, and beliefs. It is simply impossible to perform any public action that meets with 100% approval. Some people are adept at criticising from their armchairs without ever risking getting involved. Some feel threatened by anything that brings an unpleasant reality to their attention, or that reduces their own power or comfort in any way. A local organisation had to fight an extensive court battle to open a respite facility for people with mental health problems when many members of the local community tried to block it on grounds such as their perceived risk of violence from the members, and possible lowering of house prices in the area. Most community services aimed at vulnerable, stigmatised populations face similar challenges with harsh criticism. Anyone who works in retail or any customer service role with the public has stories of people’s bizarre, confronting, irrational, and impossible expectations, opinions, and behaviour. The comments section on internet videos and articles is often testament to exactly how ugly ‘the public’ can be. People are highly diverse, not always rational, and not always community minded. Criticism can reflect human diversity, and it can be a weapon of human perversity and cruelty.

So, if criticism is risky, but also essential and inevitable – how the hell can I engage with it? The approaches we are inclined to when experiencing criticism fatigue are so harmful and create many more problems than they solve. Increasing control, reducing transparency, filtering access, giving up, hating ourselves, refusing to listen, and attacking back all deflect, avoid, and weaponise criticism. What are we left with? What does it look like when we engage with criticism as a healthy and essential part of communication? How can we recognise our own limits and vulnerabilities around criticism fatigue? How can we support ourselves to engage criticism in constructive ways? I am no expert for sure, but I have been lucky enough to have some good mentors and read some interesting books in this area which has helped a bit as I’ve fumbled my way through peer work. Something to explore in my next post.

22 weeks pregnant

I’m on the upwards swing of my mood cycle, and enjoying it immensely. I have DONE things and FINISHED things and I am back for a little while in the place where hosting an art exhibition actually seems like a good idea. This is unlikely to last so I am getting as much mileage out of it as I can. 🙂

Last week I learned that Centrelink (Australian welfare) had given me until today to gather a very important assortment of supporting documents from individuals and organisations. Considering the Easter long weekend knocked 4 business days out of the already tight timeframe of one week, I have been a very busy person. It’s like war, really. Of paperwork. The most stubborn and well informed person wins, if you don’t starve to death or beat your own brains out against your desk in the process. At least, that’s my take on things. So today I uploaded a stash of documents and I am hoping that I’ve made some pencil-pusher somewhere very happy and they can photocopy them in triplicate and file them all to their heart’s content. I’m done!

Yesterday I picked up a second big collection of prints for my upcoming exhibition and spent the evening cataloguing them and filing the originals safely away. Very time consuming process, but also exciting and satisfying! They are sooooo lovely. I am very excited about showing them to people. And I’m hoping like crazy that my catalogue will make re-orders much easier for me, and adding new information a simple process… please?

I was recently introduced to trello.com and I’ve trialled it this week to help me keep track of my various to do lists… I am managing the household admin for my family, a lot of admin for our amazing teen, everything for my exhibition, and my own personal stuff that needs doing. I’m loving trello. Managing multiple projects is much easier when I can update and modify things online instead of endlessly rewriting my lists as they get harder to read over time. I am taking on admin better than I ever have this year, I’ve accepted that it’s just going to be one of my roles in my family and the faster I adapt to that and the more skills I develop the less stressful it will be. There’s still days I want to set my desk on fire, of course, but I am delegating more and accepting that my fledgling organisational skills are needed and necessary and help my family run more smoothly. I’m also finally counting the admin as ‘housework’ and not double loading myself trying to make sure I do lots of that too- I think growing up it wasn’t treated as a real thing that actually took time and effort and skill, like lots of the things women traditionally did for their families. Repositioning it as important (and something no one else wants to do) and acknowledging that it takes dedication on my part is helping. We keep tinkering with new structures for housework and bedtimes and homework and sharing the very small space we live in now there’s three of us here and bit by bit I feel like we’re muddling our way towards approaches and systems that work for us.

Pregnant still at 22 weeks now. Bubs kicks and does back flips and wriggles around every day, mostly just a nudge here and there, but sometimes a good hour of frenetic dancing I can’t sleep through. It’s pretty awesome to have that constant reminder they are alive. Both Rose and I are still struggling with pretty intense anxiety about them, personally I feel almost obsessed by my fears about having a stillbirth. I still haven’t heard from my midwife despite many phone calls and messages left for her. I have a letter from the hospital telling me she will be in touch sometime, and reminding me that until I have that all important first meeting I’m not officially in the program or allowed to ask for support from them. So irritatingly I’m trekking off to my GP for hand holding and advice about horrible itching (which can be a sign of important things going wrong, or can just be my usual unhappy skin being extra unhappy) and so on. I know having a midwife doesn’t magically make anything safer or better but as the weeks go by it’s getting harder not to resent not having her on board or take it all personally or feel a bit overwhelmed by the fears of something glitching with my health and being kicked out of the midwife program anyway. There’s a whole lot of things I can’t control and won’t be given a choice about, and having that restrict any further is a possibility that feels suffocating.

Health wise I have a lot more energy, thankfully, and the nausea is much rarer. Food aversions are in full force still and unpredictable. Cravings are starting up, so far I’m fascinated by coffee which is unusual for me. I’m restricting myself to 2 cups a week but those I am very much enjoying. Possibly linked to that is that the fibro pain levels are high, and my mornings and nights are nasty. I can barely walk most evenings due to severe back pain and uncooperative nerves that don’t want to bear weight on my legs. Mornings I wake up feeling like I’ve been kicked a few times by a horse. My life currently puts deadlines in front of me that require I drag myself into the world of the living and make things happen. Once the deadlines have passed I usually need some days of seriously not adulting very much at all to recover. Tomorrow will hopefully be one of those days.

Tonight, I’m loading up an online game to reward myself, and in the background I can hear Rose singing our stressed teen to sleep. I adore my peoples. ❤

You’re Doing It Wrong: Criticism Fatigue and Peer Work

Part 1. Criticism is Risky

Criticism fatigue (a term I’ve appropriated from the idea of compassion fatigue) is one of my vulnerabilities. As a peer worker I’m partly a ‘service user’ and partly a ‘service provider’. I have to deal with criticism in both roles, but the latter role brings special challenges that I’d never expected or considered before I took it on. Criticism fatigue is where I feel overloaded and want to respond to criticism in ways that are destructive. I might attack back a person I feel is attacking me, or feel so discouraged that I withdraw and stop doing what I’m trying to do or close the resources I’m offering. I might look for support among my peers in ways that re-enforce an ‘us and them’ dynamic, tightening our ranks or even having others step in to harass or rally against the person criticising. I might turn on myself with self-loathing. I might simply turn off my hearing and stop listening to ‘the haters’, taking in only feedback which is encouraging and positive. All of these ways of responding are risky and destructive. They contribute to worker burn-out, ‘class wars’ between different groups in the mental health sector (volunteers vs paid staff, management vs front line staff, consumers vs service providers etc etc), and the slow, gradual restructuring of services to reduce the incidence of complaints through a variety of ways that significantly decrease the value and increase the likelihood of harm created by the service. The risks of risk averse services have been well documented and elaborated upon by people such as Mary O’Hagan.

A number of things make me at higher risk for criticism fatigue. One is the idea that the service that has the fewest complaints is the one that is running best. This is a bit counter-intuitive, so bear with me. It seems so obvious that if you are choosing between two say, mental health support groups to fund, and you learn that Group A has about 30 formal and 60 informal complaints in a year, and Group B has 2 formal and 4 informal complaints in a year, then it seems pretty clear that Group B is by far the better run, more useful and safe service. And that might be true! But sometimes the stats are misleading.

Group B may have shaped its service to prevent engagement with those most likely to struggle with authority, structure, and diversity – some of the most challenging areas of group engagement. It refuses to allow people with diagnoses such as BPD into the group. It limits membership to those with strict ideological similarities. It places significant obstacles to join that preference long term service users who are familiar with the nature of such resources and tend to be more institutionalised – ie. highly medicated, passive, compliant. (eg. setting is socially degrading – attending meetings via collection in a van with the words ‘mentally ill’ on the side, needing permission or referral from carers or treating doctors to join the group, the group is only advertised in highly restrictive environments such as inpatient units etc)

Group B is run in a highly authoritarian or charismatic manner so members self-select rapidly and those who are not comfortable with this style of leadership leave or are asked to leave. There are elements of Stockholm syndrome or trauma bonding within the group, with an emphasis on how fortunate the group members are to be involved and how grateful they should be. Group B has a complaints process that is intimidating, difficult to find or access, or penalises the complainant. (eg one local homelessness service had a two strikes and you’re out on your ear policy, and explained to any consumers who wished to make a complaint that a staff members word would always be taken over theirs because staff were so valuable and difficult to secure, while consumers were desperate for a place – so any complaint they might make would automatically result in a black mark against them) Group B maintains its superb record through a kind of subterfuge, not by offering a better service but by being selective about the membership and making the complaints process fraught.

There’s a context of course, which is that Group B has been created in a culture of funding instability, high levels of criticism and conflict about what resources are needed, how they should be run, and where money should be spent, and the belief that staff are experts who can make people’s lives better rather than mediators who help people access resources. Media is another part of the context – negative media attention can be unexpected, unfair, and highly destructive. Criticism can cost people their reputation, their jobs, their funding, even entire organisations can die on the back of it – sometimes totally unfairly.

Other things increase my risk for criticism fatigue too. Most service providers are trained staff who have been educated with ideas that make them vulnerable to creating resources like Group B – firstly that high levels of regulation and restriction are ‘natural’ and best practice for ‘vulnerable populations’, second that recovery or assistance is about putting the needy people in contact with the ‘experts’ who’s job it is to improve their lot in life in some way, third that complaints mean you are doing something wrong (or that the person making the complaint is wrong) and that the least complaints possible is the best outcome. So staff are cast in a parental role of responsibility that is inclined to over-control, infantilise, institutionalise, take too much responsibility for outcomes, and have a frightened and defensive response to criticism. The more I take responsibility for things I can’t possibly control, like someone else’s recovery or experiences, the more I try to be perfect and infallible, and the more I try to control things I simply can’t control the higher risk I am for criticism fatigue.

Peer workers come from a different background, may or may not be trained, and use their personal life and history in their work in ways that are often very different to other staff. There’s an extra history around criticism, at least for me, that impacts my vulnerability. As a ‘consumer’ or ‘carer’ I did and do plenty of criticising of the mental health system, and so I should. As the most powerless and impacted people within that system I deserve to have a voice and speak out about abuses of power, poor practices that are doing people harm, and advocate for better. I’ve very rarely experienced having criticism received well. Despite considerable effort to criticise in constructive, non-threatening ways, using the language of the people I’m trying to speak to, making sure there is significant acknowledgement of successes and efforts to do well, almost all of my experiences of making a complaint have been futile or even destructive to me in some way.  This is a history that compounds, making it less likely that I will criticise in the future, and less likely that when I do, I will do so in a respectful, unbiased, appropriate way – because I carry all the previous experiences with me and they radically impact my emotions, clarity, confidence, and expectations of success.

As a consumer, I’m also very accustomed to being criticised, fairly constantly, sometimes in quite subtle ways and sometimes very overt. As a consumer I face comments from staff such as being ‘too low functioning’ for a service, ‘too combative’ when I stand up for myself, ‘not committed enough to recovery’ when I’m struggling, ‘not compliant’ when I disagree, and so on. Much of this kind of criticism dis-empowers and belittles me in some way: makes me doubt myself, costs me credibility, and makes it harder for me to see myself and be seen by others as an equal adult who has a right to an opinion about my care.

As a carer my experiences of criticism were more randomly intense and contradictory, I found that I would often be criticised for being over-involved and under-involved with the ‘sick person’, by the same staff member, within the same conversation! Frustrated staff vented in ways that made no sense, and as a carer I was either totally ignored, or a convenient person to dump those frustrations on.

When I transitioned into peer work (or consumer consulting, or volunteering, and so on) I recall vividly each of the first times I was myself criticised for my ‘services’. Going from passionate consumer to a service provision role, I was naive. On some vague level I hadn’t thought through very much, I thought that my fire for good services, my willingness to listen, and my strong sense of identification as one of the ‘sick people’ not one of the ‘experts’ would all mean that I wouldn’t be criticised because I wouldn’t do anything that anyone would be upset about. Clearly, I hadn’t worked a lot in retail or with the public at that stage! I would use my power and my role to empower and be an advocate for fellow consumers who would be appreciative and thrive. Looking back, I sounded exactly like the most optimistic of any new staff member in the mental health/disability/community services sector, and I was in for the same disillusionment process.

Criticism when it came from other consumers was a huge shock. At times it was delivered in the most distressing ways. I was told I embodied words that cut deep, totally contrary to all my values and hopes, things that stayed with me and resonated inside me, playing over and over in my mind at night. Insensitive, dangerous, thoughtless, patronising.

Sometimes more aggressive. Bitch. Stupid. Fat. Psychopathic. Sadist. C*nt.

Often coming out of left field – from totally unexpected situations and people. Taking me completely by surprise. Having totally misread a person or situation, or having someone keep their feeling very hidden until a big blow-up.

Sometimes without any basis whatsoever – coming from delusions or psychosis that I’ve somehow been linked into without any involvement on my part.

Sometimes specific to my experiences, borne out of and riding on cultural stigma and fear about my identity – eg. as a same-sex-attracted woman, or someone who can experience memory loss when stressed.

Mostly coming with assumptions that I had intended to hurt or even harm, that I was deliberately doing so, totally aware of it and even revelling in it. That I simply didn’t care and deserved to be punished for my indifference, or harmed in return to ‘wake me up’ to what I was doing.

Sometimes then, criticism coming over and over again from the same person, so that each interaction with them was harder to force myself into because I now knew that at some point it was coming. Feeling trapped in a relationship with someone who clearly hates things about me and what I do, or is transferring a stack of unfinished business onto me. As the service provider not feeling free to leave them the way they were to leave me. Feeling myself walking on eggshells and doomed to fail.

Sometimes physically scared. Having to call security, standing up to someone enraged and a lot bigger than I am. Encountering rage, contempt, revulsion, dehumanising, and total indifference to my own needs and vulnerabilities.

Sometimes not being seen as sincere even when I desperately was. Having a heartfelt apology rejected. Finding that there seemed to be nothing I could do to help the other person see that I was human too, had not intended to hurt them, and was trying to reconcile.

Sometimes not being given the chance to reconcile. Criticism followed by cut-off where I could not address misunderstandings or respond to accusations.

Sometimes being esteemed too greatly by hurting people for a little while could see only my strengths and the good, comfortable aspects of the resources I was involved in. When my feet of clay became visible, experiencing the dramatic flip to being totally devalued and despised. Learning to be as cautious of compliments as I was of criticism because they sometimes had a close relationship.

Sometimes losing my consumer status with other consumers. Feeling rejected by ‘my people’ who no longer saw me as ‘one of them’.

Finding that taking on any authority role at all meant that I picked up the tab for how everyone in authority had previously treated this person. Being tarred with the brush of those who came before me. Finding myself tempted by all the responses I had so hated in others –

  • denial
  • minimising & downplaying
  • distancing myself from ‘those others’ who had treated people badly
  • refusing to engage or take responsibility for the privileges of authority

Criticism fatigue puts me at risk of behaving in highly abusive or destructive ways.

As a peer worker, I was stunned by how something that would have felt monumental to me as a consumer felt so incidental to me as a worker. It was incredibly challenging to pay attention to this. I felt like I was walking back and forth between two windows, looking at totally different perspectives of the same view – through the consumer window it was a mountain, and through the worker window it was a molehill. I began to understand the distortions that come with having any kind of power – how difficult it is to give credibility to the perspective of the person who doesn’t have it.

Where having power over others was almost invisible to me while being highly visible to them, I was exquisitely attuned to those in power over me, and how little I had in the context of the hierarchy above me. Hyper-awareness of my own vulnerability and sense of powerlessness went hand in hand with a new blindness to the vulnerability of those in my ‘care’.

As I flinched from these experiences and started to struggle with criticism fatigue, an opposite process also kicked into gear – compassionate consumers who needed to make a criticism of some kind became afraid of hurting me and self censored. Dehumanised and lashed on the one hand, and caught in silenced and distorted relationships on the other, it was easy to see how quickly my world could polarise into my detractors and my supporters, those who savaged me, and those who never questioned me. Caught within that framework I would be set up for increasing cognitive distortions and corruption of my goals and values.

Criticism from above was also different as a peer worker, and often centred around being too like consumers, and needing to show that I was ‘one of them’ a real staff member. (even if an unpaid volunteer with almost none of the benefits of being a staff member) Criticism often dovetailed. For example, a complaint from a consumer in a resource I was running would often need to be dealt with at the same time as triggering a review process from those in authority over me who needed an explanation. This could be very stressful for a number of reasons, my own issues with authority figures and massive anxiety about these kinds of conversations, huge ideological gulfs between my approaches to criticism and those of the team leader/supervisor/manager wanting the problem resolved quickly, and often an adversarial approach to challenging situations – time pressed and overloaded management unable or unwilling to explore the complexities of situations and finding myself with two options only – either I am right, or the complainant is right. In those situations if I want my job or I want my resources to keep running, I had better make sure that at the end of that 20 minute review my boss thinks I am right.

So I’ve found myself tap-dancing, trying to show that I haven’t done something horribly wrong where I should be reprimanded, that my resource is valuable to many and shouldn’t be closed, and at the same time trying to advocate for a consumer who is making complaints about me – because unbeknown to them they are being branded a ‘serial complainer’ and the organisation is considering banning them from all resources on the basis that they are wasting a lot of time and tying up resources that could be better used on other, easier to deal with people. Where I’m trying to show that a compassionate and engaged response to a person in terrible pain with a horrible history of having power over them abused IS one of the functions of a good resource and organisation, not a waste of time. Trying to operate with integrity under these conditions has been extremely straining.

As a service provider, I also get criticism from those outside of my resources. I once had a psychiatrist at a social gathering tell me they would be forbidding any of their clients from accessing my resources because they believed that they, and I, were dangerous. I’ve had this blog listed as an example of a dangerous and ignorant person perpetuating the myth that DID exists. Yesterday I received an email telling me I am eyesore on the face of the multiplicity community, that my approach is harmful and gross and hurting people with DID, and that it’s clear I don’t care. It would be easy for me to immediately conclude that I have spectacularly failed my aim of safely resourcing people in need and should shut down what I’m doing, but actually this is quite normal in mental health. (that doesn’t mean I get to ignore it either – but to take it on uncritically is also naive) One psychiatrist rails against the inpatient unit of another psychiatrist. Whole committees argue intensely about the definitions of disorders and what counts as real. Working for a little while in the eating disorders sector was like jumping into a shark tank of furious hostility about what defines an eating disorder and which approach was best. People’s lives, futures, families, incomes, professional reputations, jobs, and funding are at stake. It’s an intense arena for criticism, which is often lobbed like bombs across enemy lines. It’s easy to feel under attack from all quarters.

And people think peer workers burn out because we’re juggling a job and a mental health problem!

Criticism can of course be warranted and useful and even experienced as helpful! I’m using the term broadly here, encompassing complaints, corrections, and even abuse. Their unifying feature is how uncomfortable they can be and the way we are likely to perceive all of them, on some level, as a threat. We work hard in our lives to prevent, avoid, or protect ourselves from threats. Experiencing criticism as a threat is, to my mind, the highest risk for me to move into criticism fatigue. And the difficulty is, this is not always an inaccurate perception – some forms of criticism, and criticism in some contexts is a threat – abusive, costly, and unfair. All these experiences also accumulate and inform our response to criticism which tends over time to become more avoidant, defensive, or aggressive. Even gentle, respectful, and totally warranted criticism can easily be highly threatening, because it challenges my perception of myself (and others perceptions of me) as a good person and my resources as valuable and helpful.

So, this is the context and these are the risks. When I wake up to hostile Facebook messages or group turmoil and I simply want to lash out or run away, how else can I approach criticism? What reduces my risk of criticism fatigue? For me, the first step has been to explore what criticism is and go beyond my sense of being under threat. Which is a topic for my next post: Criticism fatigue part 2: Criticism is essential

 

Anniversaries of loss

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

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

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

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

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

Melting Down

I had a meltdown in the small hours of this morning. I woke around 4am and spent a long time trying to get back to sleep and ease my growing nausea without success. At about half past 5 I woke up Rose. She shut the door as I crashed into vomiting and hysterical crying I simply couldn’t stop.She rubbed my back while I sobbed and apologised because I wanted so much to not be experiencing that and could not stop it, and because I’d filled in a stack of mental health assessments the morning before and the questions designed to measure my levels of self compassion and mindfulness were making it harder for me to have self compassion about my intense pain.

Today, sick and fragile I’ve watched the world from my couch and felt myself shifting into a dark, heartsick place where I need something I can’t name yet. Restless, I can hear the wind in the trees out in the night and it calls to me in a language I don’t speak but do recognise. Better to sail my hurting body out into the dark and answer the call than to stay cocooned and feeling a poison seep into my heart.

Snatches of poems call to me. The coming upon the end of my strength. That some things are untrue even in the darkest places. (The Bad Fathers) I hunt them down and read them with tears on my cheeks and I can’t tell you why these poems or what I’m crying about.

I’m not here, but I don’t know where I am instead. I’m not me, but I have no name or place except the night and the wind. Stepping sideways into a shadowed place, there’s a memory of hysteria but no voice cries here. There’s a silence under everything, under all the sounds I hear, and beneath even that is a yearning.

As the dawn broke this morning I hunched over vomit and sobbed. My self cracked and pain broke through like a storm. I could no more stop it than stop a waterfall. My mind was thorny with the sharp and broken ideas beneath simple questions on paper. I washed upon them naked and they cut into me. “How often do you feel anxious and scared for no good reason?” Never, I whispered defiantly, never. There have always been reasons and all them are good, even if I can’t see them or name them, even if you can’t see them or don’t think they’re important. All their words, so seemingly harmless and well intended, make it so much harder to be human. The act of observation changes what is observed, it sets a fire in my bones. You cannot measure me with impartiality and likert scales that assume I am mentally ill because I am in pain, that I am defective in some way in a world that is just and safe, that pain is madness and madness is without meaning. You cannot measure my capacity to be disengaged from my own anguish and compassionate towards my woundedness without leaving a stain of shame upon my vulnerability. This is what it is. I vomit your beliefs in the night and my love strokes my back.

Here in the night again, waiting for my body to knit back together I find I’d still rather be a poet than believe that pain is sickness. So much of your ‘health’ is simply good fortune. The obsession with control and disconnection are your sickness, not mine. I can break into a thousand pieces and the night after still be moved by the wind in the trees. I am not numb, and I can walk in other worlds. Pain is not the key, but it is part of the price. With one eye I look into the sun and with the other, into the night. (you will not take me, you will not make me your own)

There was no unkindness, on the contrary, I spent a long morning with the kindest and warmest professional I’ve met in a long time. She stoked the fires of my hopes for credentials, income, employment. Told me with delight that the late Michael White, a brilliant narrative therapist who’s work I greatly admire, would have loved me. Opened all the doors I was closing with grief and fed all the starving hopes. I was near manic with excitement all day. There’s something I don’t yet understand beneath all my pain about work. I can’t see it clearly or find a name for it. It has twisted my passion into an unbearably intense pain and self hate that are triggered both by hopelessness and, more cruelly, by hope. These are the thorns that prick my spirit. I scrape over every moment that triggers shame, every opportunity I missed, every time I’ve frozen up, trying to figure out if it’s me or the world. Did I self-sabotage? Was there something I missed? Passed up? Should I have tried harder, fought longer, believed more deeply, needed less. Been less poor, less sick, less wounded, less alone. Would this then have all worked out and I could be the properly ‘recovered’ person I’ve been trying to so hard to be, and wear the armour no one can see that stops you taking the kind of hits you throw up the next morning? I’ve tasted employment and credibility and having an income and it is so much better than this. I may still be alone and naked in front of the crowd but I can afford a robe to put on when I get off the stage. And it’s also no better at all, the aftermath of passion and exposure can still strip me raw and strand me in a place without comfort.

Maybe success would cost me something I can’t see. While I’m here, wrestling with snakes in the pit, I find others reach soft hands to me, likewise scarred. Me too, they say, me too. I know this grief and hollowness, the sense of non-self, non-identity, outside of history and the great people, outside even of the ledgers of those who bind self to job. I know the death by a thousands cuts of your world, each cut a space on a form after “employment?”, a pause in the conversation after asking what I do.

My child still lives within me, what more fortune can I ask for than that? If fortune is a well from which we draw, who’s portion would I take? Here, with the other broken people I find a kind of gentleness, like the quiet generosity of the very poor. You, I am not ashamed of, sisters. Their world is not our world, and I don’t know that I’ll ever be able to wear fine clothes without feeling like a child dressing up. My limitations and my aspirations collide and I am the one that falls.

Ah well. The moon is high and beautiful tonight. The house is quiet. A life deeply lived cannot be without risk or without pain. Pain is not all there is here.

 

Waiting for You Exhibition & Artbook Launch

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

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

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

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

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

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

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

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Hard work and lots of love

Today was madcap. Things have been moving so fast lately with an extra person in the house and all the scrambling to adjust and adapt that come with suddenly caring for a teen. We are working hard to keep stress levels as low as we can, which means riding out big stress spikes for all of us every few days as the wheels fall off something, and then coming back down to a calmer space in which everyone can think, plan, and more importantly – digest food and get to sleep! I feel really proud of us because I think we’re doing really well at this. Some of those skills I’ve worked so hard on about navigating personal crisis seem to be working well for helping our family deal with the ups and downs too.

Today, Zoe had a gash on her leg that looked bad enough to possibly need stitches, Rose and I dropped our van in at the mechanic to have the radiator replaced and got home in our little car only to have it die. A friend kindly came over so we could get Zoe to the vet using their car, we cancelled what we could for the day, sorted out dinner and went off to an important appointment together after school. On collecting the van we discovered that replacing the radiator seems to have wrecked the air conditioning – something we were warned might happen due to some damage probably caused by a front end impact in the van for a previous owner…

Zoe got away fairly lightly with a bandage, cone of shame, and meds. We’re trying to arrange a tow for the car that’s not running at all and cancelling non essential appointments for the next few days of hot weather. At various times today we got heat fried, overwhelmed by the costs, teary and tired, and worried about the baby. It was really hard! But we’ve spent this evening in front of the air conditioner with dinner and ice cream. Homework is happening, there have been board games and hugs. I’ve written a list of the most urgent things we need to get done over the next few days. Zoe has taken her meds. Everything is okay again. Tired, a bit tattered around the edge maybe, but okay.
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On the upside, this pregnancy has really started whizzing by! We’re up to 17 weeks now! That’s amazing. I’ve gone from knowing exactly how many weeks and days I am all the time to missing whole weeks while I’m focused elsewhere. (Rose however, still knows exactly what day we’re up to and what size the baby is all the time) I’ve also stopped worrying about how we’re going to cope with a baby and if I’m going to be an okay parent and all the terribly consuming first parent anxieties that felt so overwhelming only a month ago… It’s overwhelming but it’s also wonderful, delightful, deeply moving. Our tribe has such amazing people in it and I love each of them. Opening our home to someone means they are very special to us, very loved and trusted to be safe and bring their own light, their own heart into our family. We are enriched and fortunate! Amazing and precious experiences are unfolding. Just because it’s hard doesn’t mean it’s not very worth it. ❤

Everyone’s invited to my birthday

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I’m not that great at birthdays, to be honest. I often get depressed and confused, and spent too much time wondering about the state of my life instead of arranging a lovely celebration. Choosing who to invite fills me with gnawing anxiety in case someone feels left out, and trying to word “please don’t bring gifts if you are broke/forgot it was on until an hour ago/would find that stressful BUT equally if gift gifting is something you love and part of your love language I will not be angry/set them on fire/refuse to speak to you again if you do” so that it fits on an invite gives me a headache. The event itself, which I find mildly terrifying but slightly less awful than not having an event, either falls to my long-suffering partner or friends to conjure, or in a last minute fit of bewilderment gets sprung on my nearest and dearest with anything up to 6 hours notice.

This year will be different! With encouragement from Rose, I am working on a project I have been thinking about for a while – I will be hosting an art exhibition for my birthday instead of a party. It will be exciting, give me something to focus on, justify the expense and time, give people things to look at that are not me, be open to everyone who wants to come, and there will still be cake! Win-win.

I’ve chosen the topic of pregnancy, loss & motherhood as that’s been a huge focus over the past few years and I would love to showcase the artworks. My artbook Mourning the Unborn will also be launched and available for sale, as will prints of the art. I am working hard on the second draft of the artbook at the moment, which will be my first ever publication! I have also put in a new order for 24 karat gold leaf and look forward to showing my beautiful hand gilded prints for the first time!

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

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

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

Pregnancy & Grief

The most wonderful news came in last night – the laws here in South Australia have been changed and just in time for Rose and myself. This means that she will be able to be on our babies birth certificate and has full legal recognition as their parent, alongside me. We were so happy we cried. It makes such a difference for our little family.

I am 15 weeks pregnant now and my bump is too big to fit my jeans or a lot of my skirts comfortably any more, although I still weigh a lot less than I did at the start of this pregnancy. I am experiencing a little less intense nausea and getting about 2 good days out of every week, but the fatigue in particular is still severe and demoralising. My world is home at the moment; I do housework, and household admin, and debriefing for people, and drive people to appointments when needed. A lot of time is needed to rest. Eating is still a bit tough and often takes some time to recover from. I’m hoping that as the pregnancy progresses I might start feeling better and better. Rose is busy and productive with her full time study, and the teen staying with us is a studious school student, so I feel a bit lost without a project of my own, in that rather unglamorous and unrecognised place of spending my health on whatever needs doing I can manage around the edges. I’ve been getting very teary and distressed at the prospect that I might not make it back to paid work or wind up with a degree or a career despite all the work I’ve done towards those goals.

Rose is such a help. She doesn’t get my distress personally – her focus is on being a Mum and that fills her world. I always wanted kids and work outside of the home and I’ve been so ill for the past 6 or so months I’m starting to lose hope. She was up with me until 1am last night while I just cried my heart out. It’s a madly intense grief and it’s all tied up with self worth and a sense of significance and belonging and connection and making a difference in the world… I don’t feel any sense of judgement towards others who need support or are sick, I’m just struggling to navigate it myself. It’s a little better than it was 6 months ago when it actually felt like if I couldn’t figure work out and find a way through I couldn’t survive. Planning a baby has kicked my sense of wanting to financially contribute to my family into overdrive, far beyond my capacity. And where pre-Rose my focus was strongly about contributing to the world – doing something of value whether I got paid or not, with a family I suddenly also needed to bring in money. Those are very difficult values to pair up at the best of times. I feel like I’ve been mangled between them.

It’s become such an obsessive focus for me that I’ve been unable to do other things that I love, like paint, because it doesn’t even feel like I can breathe until I figure this out and am on track for a paid job. Combine that with very poor health and that’s a long time of beating myself up and not breathing. I was chatting with a friend the other day who was angry about someone who was breaking the law and being horribly irresponsible and I mentioned that I was not feeling like I was being very responsible at the moment. She looked at me oddly and said that being on disability support wasn’t criminal or irresponsible. I know that but it actually kind of surprised me too. The kind of urgency I feel is as if what I am doing now is illegal and I must find an alternative. I know it’s not rational but it’s incredibly difficult to put the brakes on it.

I find it so much easier to be brave about my mental health than my physical health, which is the reverse of most people and probably partly a hangover from having all my physical health issues treated as psychosomatic for so long. To talk about having a child while on welfare, in my culture? It takes more courage than I have most days. I get attacked, like everyone who’s poor or queer or has a disability does when they want kids of their own and it’s just too much to bear a lot of the time. Too public, too vulnerable, too much vitriol from too many directions. All spewing the same message of worthlessness, as if I haven’t heard that enough in my life, felt it enough. In some ways being a parent feels like crawling back into the school yard to let the bullies have another go at me. See if you can hit me where it already hurts, some of those wounds aren’t very healed still. I feel an intense grief to be where I am, such a sense of lost years and lost health, so much pain and chaos. So many dashed hopes and so much hard work.

All my accomplishments start to twist in my mind and what I was once proud of, like my extensive voluntary work, I start to feel ashamed of, that I was foolish and trusting and exploited. That I somehow fell short being good enough to pay. That I trusted the wrong people, made the wrong decisions, invested in the wrong career paths, and cared too much about keeping my precious ethics intact to deal with the real world of work – which is that I am nobody and have no power and no voice and should simply have put my head down and done whatever was asked of me. My overinflated sense of personal responsibility and grandiose ideas are the real problems. My sense of connection to and trust in other people twists too. I feel very envious at times, and in some cases very burned and bitter, in others just overwhelmed. It’s a painful place to be in.

One thing that has helped a lot has been reading Mary O’Hagan’s memoir Madness Made Me about her terrible years of suffering and her path into advocacy and activism. Maybe because she makes herself so accessible, I was surprised that her road into paid employment was simpler than I thought it would have been. Maybe she was gutsier than I’ve been about pursuing grants, but I could see for a moment that she was in a time and place where there were opportunities for someone intelligent, passionate, aware of the dynamics of power and with a capacity to doubt all the simple answers. It unhooked me for a minute from my frantic soul searching to figure out where I’ve gone wrong or what else I need to do to try and make it across the divide of activism and into paid employment. Some of the answer here is being in an environment where the opportunities are present. I have a lot of opportunities around me and very few of them are paid, and none of them are employment or regular work. Some of the answer too is that most of the other mental health peers I admire so much and have been trying to emulate haven’t had to deal with the multitude of issues I’ve been hit with such as severe physical illness and years spent as a the carer for other people. Many have experienced one or two of the batch but being hit with childhood bullying and abuse, a repressive religious environment with queer sexuality, family violence, severe physical illness, homelessness, years of intensive caring, major mental health challenges, poverty, isolation… It’s been a complicated life.

Some days it helps to remember that for someone who has come through what I have, still being here is a success. Not having died when I first wanted to at 10 or at 18 or 23 or 27 is a huge deal. I accidentally burned my wrist on an oven tray cooking this evening and it was very triggering because my wrists were often the target of my desire to self injure – such an intense, shameful, private drive that I spent many years learning to understand and dismantle. That’s something I’m proud of too, and it’s something else I can talk about openly and with compassion when I’m connecting with someone else in that kind of pain. It matters that I can do that even if I don’t get a badge with my name on it and a pay check. I’m not useless or lazy. (I’m so scared that I’m useless or lazy)

It helps to remember that I’ve brought things out of nothing and made things that help ease pain. I’m so, so beyond sad that I haven’t been able to grow them bigger, that the DI is just a little website and a few brochures that the spiritual-cause people find too clinical, the clinical and diagnosis people find way too maverick, and the rest find too mainstream. I know it annoys in some way almost everyone connected to it because trying to find a middle ground between all those perspectives is irritating to everyone. It seemed like a good idea anyway, a safe meeting place for everyone. I don’t know. I know that some people found it helpful and if it really is a good approach I’m sorry to everyone else that I couldn’t get the message out any further or louder and that it will probably die with me. I’m just too tired to do much more. But all the little things count too, right, not just the movements that gain momentum and change the world in a big way, it’s also all the little pebbles bouncing down the cliff years before the avalanche that makes the big difference.

That’s another pincer – that what I’ve dedicated my life to wasn’t worth the cost, or that it is important, but I can’t take it any further anyway. Either way I’m swamped in grief.

I want everything to be better before the baby gets here, in an insane way I know I can’t achieve. I want the house to be organised and the back yard to be planted and clean of poop, and to have resolved my work dilemmas (do I have enough spoons to be a part time receptionist and a Mum? How can I know? I know I don’t right now – how many months after the birth is the fibro likely to still be severe? Is there any point in hoping anymore?)… I want to be a better person and eat less chocolate and watch less TV and be calmer and cry less and… sigh. It’s all so painfully vulnerable!

It’s not enough to stop living while I try to force myself through this brick wall. I’ve worked so hard to be here, and it’s not my fault the wall is so high. I need a hand over it and I haven’t found one. I have to be okay with that, at least for now, and that means letting myself grieve, and it also means going back to the things that give my life meaning and joy. If I can’t do ‘real work’ it’s okay to spend time on my voluntary work. It’s okay to make art even if I’m doing it while the rest of my household is out doing real work. If I can’t find a work related project then I’m going to make a life enhancing project I can work on on my better days and get excited about and feel connected to the world with. (hold on, my love, one day there’ll be a place for us) Not so many years ago I was friendless, suicidal, recurrently homeless, terrified of my multiplicity, and deeply wounded. Not so many years I couldn’t shower without assistance or make it through the shops without a wheelchair. I remember a time when my pain was so bad I would scream myself to sleep. Here I am, fattening with a little dragon wriggling inside me, loved and safe in my home and family that’s suddenly 3 of us and waiting on the 4th. I refuse to keep suffering to punish myself for not having recovered further and to motivate myself to reach that one last big goal I can’t seem to secure. It’s okay to fail, it’s okay to fall, it’s okay to hurt about it, and it’s okay to build yourself some kind of compassion and forgiveness out of all that blood and broken bones. It’s okay to live anyway.

What do you do when the dreams burn down? What I’ve always done, mourn and howl and dream new dreams. When the bullies make me bleed I paint my face with it and refuse to become one of them. I find my warrior and call them out on it. I run into the wilds where they can’t trap me. I’m 15 weeks pregnant and sometimes now whole days go by where I’m not afraid the baby will die. It’s the most wonderful and joyful thing, especially last thing at night when I’m lying in bed in the quiet and Rose rests her hand on my bump and all the world is just the sound of our breathing and the warmth of our skin. It’s humming with usefulness and competence on the good days, making phone calls, mopping floors, paying bills, listening to people who need a compassionate ear. And it’s pain and vulnerability, ugly and awkward and embarrassing, it’s snot dripping from my nose and making my sinuses ache, and feeling obsessive but unable to let go, and getting cabin fever from another day aching and hurting on the couch, and getting afraid that maybe I’ve complained too much on Facebook or not said enough to my friends how happy I am to be pregnant. It’s waiting and waiting and waiting and following all the instructions about forbidden foods and drinks and worrying that lying on my back will reduce the blood flow to the baby and going to mummy events and feeling weird and alienated and icked out by the overwhelming pink and pastels and brutal birth stories. It’s strangers touching me and not being able to reply to messages despite feeling guilty, and wanting to make art but feeling like it’s in a locked room and I haven’t done enough to earn the key yet. It’s wanting to but still not being able to talk to or write to this baby directly.

15 weeks pregnant is not a stretch cream or baby formula commercial. It’s life and it’s messy and some of it really, really hurts. And I’m sobbing with sadness about my career at the same time that I’m overjoyed beyond words to be pregnant. It’s feeling useless and horrible on the bad days and proud of myself for making sure my people have clean clothes and for navigating difficult conversations well on better days. It’s not a happy ending, it’s not recovered, it’s not out of danger or no longer at risk.

It’s not without pain, but neither is it without meaning. It’s precious, and it takes courage.

Finding new dreams

Today was a great day. I was sick for a few hours after eating each time, but that left me a few hours where I was up to sitting at my computer… And I have finished the prototype of my photobook based on my hand made art book: Mourning the Unborn. I’ve ordered the first test copy and it will hopefully be here in a week or so. Eee! Then for tweaking and editing and… I’ll be able to show you a finished photobook that’s lovely and simple and nowhere as costly as the original. 🙂

I am not good at the first time I try to do something. I feel anxious and overwhelmed and want to get it right and don’t like experimenting. If I have a hands on teacher I’m sorted, if I’m teaching myself it can take me a long time to gather the skills and develop the confidence to get my prototype off the ground. This drives me crazy and I really admire people who jump in and learn as they go and don’t worry about making it perfect first time. Once I get the first one out there though, all the brakes come off and I’m away laughing. The second of anything is a breeze for me, at least by comparison.

Soooooo, published books have been on my goal list for years. A photobook and a non-fiction self help book are so different I expect the first of each will be a challenge, but I’m determined to get off the starting block and Rose is keen to help me. I think watching me transform from puddle of sick misery to my familiar vibrant self has inspired her to help me find some project to work on in my better moments.

We had a lovely conversation about goals and plans for this year this morning and I’m a little unsettled but also hopeful and releived. I’m finally starting to be able to step back from my intense distress about not working (for pay) and supporting my family the way I want to. I’m accepting that currently I’m so ill it makes no sense to be applying for jobs. So Rose and I have been talking about projects I feel inspired by, that I can pick up and put down between good and bad hours or days, and that might develop into a small passive income stream that helps me feel I’m contributing.

Books/publications are one part of that, and the others we’ve talked about are an etsy store for art prints and so on, and instead of a birthday party every year (which frankly I’m triggered by and rubbish at anyway), organising a small exhibition of art work.

I wish things were different. But I’ve got to work with what I’ve got and where I am. At the moment, that’s very little health and a powerful need to be involved in some way that meets twin needs to feel I’m financially contributing and making some kind of difference to someone vulnerable or in a rough place. Focusing on that feels scary and liberating, and I’m hoping I can get some more of those bright moments when I light up and forget being sick to energize and inspire me through the projects. 🙂

For everyone who’s been patiently waiting for me find some way back from my misery, who’s supported me or sent me encouragement or let me know that in some way I’ve made a difference – thank you so much. You are brilliant and you help me feel like less of a failure. I so appreciate it. ❤

Into the Second Trimester

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We made it! We’re starting to believe we might all be okay and to look to the future and make longer term plans.

I keep trying to blog but frankly I’ve been so sick I haven’t been been able to put together a coherent post. I’ve had a few windows of feeling better which I’ve put to good use by catching up on 6 months of business admin, various bits of housework, and baking my Mum a birthday cake. Mood wise I cope with a day or two pretty well but by the end of day 3 of feeling horrible, Rose tends to take a very teary person to bed.

As far as we know, everything is going brilliantly with the pregnancy. We’re hoping like crazy that the second trimester might start to be a bit easier on me, currently I’m still losing weight and struggling to eat. We have another ultrasound later this week which is nerve wracking and exciting. Hopefully this time we’ll get to hear a heart beat.

I had a brilliant day today, after a rough morning Rose took me to meet a friend of hers who works as a doula (a pregnancy and birth support person) and we had a great conversation. Funnily enough we found parallels between her work in changing experiences of childbirth, and my work in changing experiences of psychosis which was really inspiring and gave us something of a common language. It was exciting. We also share some experiences around health problems and chronic pain, which is brilliant for me because I’ve struggled to find other people who are going through pregnancy and parenthood from these backgrounds and who can understand some of my particular concerns.

I am so excited to be pregnant, but I also have a tangled relationship with pain, hospitals, working with medical people, being given intimate exams by strangers, being told not to worry, being called a good girl by patronising people who are wearing all their clothes when you aren’t, and many other common aspects of pregnancy and labour. I have past bad experiences of not being taken seriously, of being misdiagnosed, of suffering from intense pain that wasn’t believed, or wasn’t able to be medicated, or was thought to be psychosomatic. I feel very anxious and out of my depth facing labour at times, and my usual approach to feeling this way is to do some research. I’m keen to find safe places and people to dig into this territory with and start to find my own path. As much as possible I want to feel skilled, competent, resourced, and informed. I’m scared and I don’t expect to stop feeling scared, but I don’t want that fear to run the show or limit my choices.

This isn’t the pregnancy and experience I might have had if things had gone according to my original ‘plan’ and I was starting a family much healthier and younger. It’s also not the same experience I had being pregnant with Tam. I find myself grieving for those at times, and struggling to figure out how to turn my longer, more complex history into a resource rather than the mixed bag of hopes and triggers I’m currently dealing with. I want to untangle things enough that I can begin to see the possibility of good outcomes as clearly as the bad ones – most nights I still have nightmares where the baby dies. A friend gifted us their cot and I’ve been frozen with distress at the prospect of an empty cot in the house. I cope okay with the clothes and toys and carriers and so on, but the thought of facing another loss and coming home to an empty cot is simply unbearable to me. Rose took over thankfully, and it’s been dismantled and packed away into the shed.

There’s a fair trauma history here like scar tissue all over my heart. I most hate the feeling that pregnancy is a kind of ‘winner takes all’ situation, that at the end of all this bravery and misery all is made right if we are given a live baby, and all is shown to be hopeless folly if we face death again. I’m trying to find some way to make my choices and our journey meaningful, whatever the outcome. Isn’t that always the way, with life? The challenge for all of us?

So today it was exciting to feel like I’m finding what I need! The services of a doula are sometimes seen as a kind of luxury, but right now for our family this feels like exactly what we need – support that is informed, non-judgemental, and open to the grief and trauma Rose and I are carrying as well as the joy and opportunities we might otherwise miss. And it was exciting to talk shop with someone who was interested in my ideas and experiences too. When I’m a bit better I’m looking forward to doing more writing and giving talks again, and a little work is trickling in again which is making my heart sing. I wish I could be a doula too, but for people in mental health crisis, to help them deal with a first psychosis or navigate being diagnosed with DID, or a severe dissociative episode. That would be brilliant.

Keys to locked places

 

I’m 10 weeks pregnant and have been so continually sick that I’ve been unable to enjoy almost any of it. I get a good hour or half day here and there, but the rest of the time I am deeply miserable. The nausea is intense, to the point where I sweat, salivate, and tremble. Sometimes even the vibration of speaking will set off my gag reflex. Smells are intense and mostly horrible. The hot weather has left me weak and exhausted. 2 months of this has thrown me into a perpetual flashback of sick years where this was my life. It’s my nightmare – sick and needing Rose to do everything. Useless, exhausted, and depressed. Housebound, often bed bound. Joint pain, muscle pain, headaches. Thinking with sad longing of my old electric scooter. Visiting friends as long as Rose can drive both ways, and falling asleep on their couch anyway. I’ve been here before and the memories are so painful. I am so tired of being sick.

I know what it’s like to have an unborn child die, and I know that one of the things that burns is hearing women who are pregnant complaining about how difficult they are finding things like morning sickness when you’d give anything to be dealing with that and still have hope of a living child. So I don’t say much.

And I don’t say much because people love to tell me that what I’m going through now is only the tip of the iceberg, that the third trimester is exhausting, that labour is far worse, that chronic sleep deprivation and caring for an infant will make these days happy memories of vigour and health.

And I don’t say much because even my own lovely doctor wasn’t particularly sympathetic about morning sickness that doesn’t involve frequent vomiting, at least until she discovered my significant weight loss and realised I have been very sick. Then she told me that actually lots of women find the first trimester incredibly difficult, and it’s not uncommon for them to be in at their doctors in tears, ashamed and overwhelmed and saying they can’t cope after all and maybe they shouldn’t be doing this.

I don’t say much because I’m grateful grateful grateful and don’t want to lose this baby.

I don’t say much.

I, who have bared so much, find myself silent and stoic, head bowed, making bargains with the universe. If I accept this, will you turn tragedy aside from my family? Does the suffering make my child stronger? I have fought shaming and silencing in so many ways and yet here in a second pregnancy after loss, I find everything has changed. It’s such an effort to share this time, I stir myself from muddy deeps and swim oh so slowly towards the surface, weighted by dread. I fear attack, fear shaming, fear all those who believe that the world is just, that good people are taken care of, that fertility is somehow fair: an indication of boon or blessing or divine right. In my mind I can follow the tortured logic and understand people’s need to calm their own hearts but my heart doesn’t understand, doesn’t forgive, it’s just dark and thick tongued and wordless and afraid.

I didn’t just lose Tam, I’ve lost those beautiful weeks and months of heartfelt joy this time around. That calm certainty that things would be okay; all the stars in their right place and me in mine. (We think we are kind when in fact we are merely happy – CS Lewis) This time around the highs are followed by plunges into deep lows. We talk with qualifiers – if the baby comes, if everything works out. I find myself drawn to stories of tragedy with children and feel like I’m falling into a dark world I can’t get out of. Infants dying in the NICU, 3 year olds with cancer, 7 year olds who drown. I feel like I was so arrogant to think that if I did everything right, I could somehow bypass more savage loss. I could move out of the underclass, plagued by poverty, homelessness, and sickness into a bright ‘normal’ place where things like this don’t happen. That I’ve suffered enough and worked hard enough, earned my way out of more pain, as if life is about what we deserve. Isn’t that the illusion all hopeful parents have? That we can build a pastel coloured wall around our children and keep them from all harm? And when harm comes to your family anyway, the whole strange pastel mummy world seems so bizarre, such a fiction of security. We lie and lie and lie, and create these strange microcosms where nothing casts a shadow and nothing ever dies, and I cannot even breathe in them.

On good days I don’t just feel better, with the health unlocks all the memories of strength, hope, and vigour. I sing and play and work and find myself for moments in the sunlight feeling connected or excited or content. On good days I feel stronger than the bad stories, stronger than the fear and the sense of loneliness and cabin fever. On good days I feel like I will be my own kind of parent, strange and deeply loving, not squeezed into the strange mould I feel advancing upon me, I remember that there’s more than one way to do this right and that authenticity is more important than people pretend, and that some mothers climb trees too and understand both the lure and the fear of the backyard after dark. On good days I can breathe.

Most days, Rose sings to our unborn child, lullabies to quiet all three anxious fluttering hearts. Recently we lay naked in the summer night and she asked me to teach her a new song, something I loved. I thought of us the week before, driving to our first scan, making ourselves face this terrible laying bare of all our hopes and illusions. We sat upright in the car seats, that willing of the body to do what it does not wish to do. We sang to each other, tears masking our faces as we breathed in terror and breathed out our last courage. I sang songs by one of my favourite artists, Nick Cave, and so in bed I sang Into My Arms to her again. There in the warm dark, her fingers tracing my skin, I felt some shadowed part of my heart unlock and found a small sense of peace. A vision of myself rocking a baby and singing Cave rather than inane children’s songs to them in the small hours. It’s the first image of motherhood that exists in my mind beyond the fears of loss and the laughing tales of misery my culture gives me at every turn. I feel like myself in that vision, and in that moment I’m not afraid.

Another night recently we go to bed and I lose my grip on the crumbling stoicism and howl with a broken heart about so many things. How different this pregnancy is and how much I want to enjoy it and feel excited and connected to our growing baby. How deeply sad I am about my business failures and losses, and all the jobs I applied for last year and didn’t get, and the career that I so deeply wanted and have worked so hard for and now… realise that I might never have. Grief, grief like losing a piece of myself. My broken, frozen system, out far beyond all certainties and lost past the edges of the maps. All these dreams. She holds me, my love. She holds me and I weep onto her chest, she soothes me running her hands along my back as I shudder with pain. I find my voice in the darkness and I stop being strong and I stop accepting the pain as my part of the bargain and a little love seeps in through her arms, her kisses. My dark and silent prison unlocks a little. A little light reaches me, and I don’t feel so alone or so afraid anymore.

6 weeks pregnant

I thought I was doing someone a favour this morning but I think it backfired. It turns out that nervous student on first day of placement + very hot weather + morning sickness is a recipe for vomiting, nearly fainting, and somewhat traumatising all involved. There was a lot of fluster. Sensible instructions like “don’t just feel for the vein and then get the needle and poke it in, you have to feel again and make sure the needle will be in the right spot!” were emphasised by a slightly harassed supervisor. I nearly had the opportunity to drink the special extra fun sugar water from the fridge when it was confused with the regular cool water. And I’ve been sternly instructed that however well I feel I’m supposed to lie down for tests in the future because pinning green/white pregnant ladies to the chair is hard on blood techs. I’m not sure why they don’t have sick bags handy considering how many people go woozy with blood tests – and repeat missing the vein tests especially, but fortunately those bags they send off the vials in are handy and don’t leak. Fortunately for me I’ve been doing extra work on my needle phobia in acupuncture sessions.

I’m hanging in there. Froggie is the size of a ladybug. I’m getting a lot of nausea and food cravings and aversions. Rice crackers and fruit are my friends. I wish I felt a whole lot more excited and happy but mostly what I feel is massively vulnerable, and relief that I’ve still got a stack of symptoms that reassure me I’m still pregnant. I’m doing my childcare cert 3 and applying for other jobs, and sleeping on the couch in front of the air conditioner. Rose sorted out my resume for an application last night because I was wrecked and fell asleep – it was so lovely of her and felt like old times with her helping me try and get something for work sorted out. Week by week I’m gradually getting better, but I’ve been a long way down and my energy and confidence have taken huge hits. I find it hard to share about, partly because I’m still figuring out what happened, and partly because it’s easy to swamp me with shame and guilt while I’m still so rough. The days go by very slowly, it’s taking a very long time to reach 8 weeks and our first all important scan. Just breathing. Just hoping.

Please may our baby live. Please may life make sense to me again. Please may I find my place in the world.