Happy first birthday, Poppy

Cake is in the oven, baking. I have backup sponge cake in case of emergency. I’m nursing her to sleep then I’ll make chocolate popping candy spiders for treats, and whip a white chocolate ganache for the cake. Nothing is essential and if anything doesn’t get done, everything will be fine. Nothing needs to be perfect. I can’t quite believe I’m making my daughter’s first birthday cake! I’ve been waiting for this a long time. 🙂

Reflections on the past year:

When Poppy was about 6 months old, I baked peanut cookies. I was gifted a second hand Kenwood mixer for Christmas and I love it. I learned to bake using my Mum’s mixer and I feel very at home, delighted, familiar. Our baker comes out and hums happily around the kitchen, thinking of Grandma. Flour sprinkles into the floor like the lightest snow.
A few months ago was bin night. As we dragged out the bins Rose and I started pulling weeds from the front yard on impulse. It was dark and starry and the garden had been soaked so the earth was soft and wet. In about 20 minutes we filled our green compost bin. We had mud on our feet. Grasping nettles firmly in the dark, fingers fumbling around thorns. A dark joy rising, to be in the earth, in the night, hands in soil, the scent of roses.

Changing Poppy first thing in the morning. She wakes with a sleepy smile and stares into my eyes. Milk runs down my body and spatters like rain on the linoleum. Poppy is so alert and so focused on the world around her but in moments like these it’s just her and I alone and something wordless between us. I have to watch for them or they are easy to miss. It’s a kind of knowing, quiet and strong.

Sick with gastro. Wracked with pain and vomiting. Crying quietly so as not to wake my family. Poppy needs milk. I lie on my side too exhausted to weep and Rose brings Poppy to nurse. I have to hold both her hands or she is like a kitten and folds her sharp little nails deep into my breast, kneading. Her hair is fine and soft as down. I fall in and out of sleep. In my mind I am alone, unloved, unlovable. I have no tribe and no one is coming. The world is dark and cold and everything hurts. It passes.

Zoe has a new passion for escape. She jumps our 6 foot fences and escapes when frightened of fireworks. New Year’s Day I call everywhere and Rose visits the local pound looking for her. I’m a tangled mess of grief, guilt, fear, relief, and shame. She comes home herself, exhausted and sleeps for 2 days. She whines and wakes everyone up several times a night to investigate the back yard for possums. I sleep her in the laundry with access to the back. For one night she is content. The second night she gets into our neighbors yard and then panics and can’t get back into ours. She’s hysterical by the time I find out and go over to bring her home.

Zoe guards our home and barks at passers-by. Each time Poppy is startled she bites me when nursing. One nipple is bloody and mauled. It won’t heal until I get a cream to treat infection. I rest it for days and pump on that side. The air conditioner floods the bedroom. It rains on the nappies that were drying on the line. Poppy loves Zoe and plays with her tail. Zoe kicks Poppy in the face. It’s all too hard. I’m pinned between love, responsibility, and fear. Fear of judgement from others paralyzes me. I can’t find a way through. I spend the morning in bed crying. I’m rescued, family takes Zoe in and cares for her. 

I miss her every moment. My home is so peaceful. People walk past our house and Poppy nurses unaware. I go from 15 bites a day to 1 bite every 3 days. The guilt is like a tidal river that comes up and down. The stress eases away like floodwaters draining, leaving mud and debris and wide open blue skies.

A friend we haven’t seen often visits. I cook pancakes. We watch cute animal videos on YouTube. Poppy loves cats but bursts into tears at the video of a hedgehog taking a bath. Star plays the guitar in her room and my heart melts.

Rose has a tooth extraction. It’s a difficult procedure and there’s a lot of pain. Five days later she’s still hurting. At 4am she’s overwhelmed by it. I hold her. We can’t tell if it’s infected or just slow to heal. There’s only the ER open. We talk through options. I push for hospital but she’s demoralized and afraid. What if there’s nothing wrong and they are mean? Hospitals are not safe places for Rose. I stroke her hand. She falls asleep with an ice pack nested under her ear like a little red and white bird.

Rose is napping and I am cooking dinner. Star has cuddled Poppy to sleep. Frying chicken sets off the smoke alarm. I run out to it and clip our esky  (cool box) on the way, breaking my little toe. Rose races out of bed to help me. “Poor love!” she cries, “I’m so sorry I slept, I can do the rest of dinner.” I push her out of the kitchen, hopping. Snarl at her “Go away! I’m being nice to you! I’m cooking while you nap, don’t wreck it!” Rose wisely decides not to argue. Poppy sleeps through the whole thing.

Poppy shows the developmental signs she’s ready to start trying food. Strawberries, nectarines, and watermelon are big favorites. Banana and mashed potato not so much. As she gets older she discovers the pleasure of dropping food then stomping on it until it’s squished into her toes. She giggles madly.

I crave bed with a single-mindedness that’s embarrassing. The sheets are changed far too infrequently but I’m so tired by the end of the day I never care. Crawling under my blankets is a kind of bliss. My evenings are spent anchored by one nipple to a small person. I learn I can download books onto an app on my phone. If I turn down the screen brightness and add a blue light filter, it’s almost like reading a book but can be done one handed in the dark. I’m thrilled.

Poppy discovers she can squirt milk by suckling then coming off the breast and leaning on it with her hands. She shoots milk up her own nose and giggles. I spend half my life damp. She hates the breast pump with intensity. I pump milk for day care and she stands at my knee howling with despair that I insist on sharing her milk with this mechanical baby. If she can reach it she pulls the plug or runs away with the hose. 

Poppy gets older and doesn’t coo at me like a little dove anymore. But she does sometimes talk to me in soft little hoots like an owl. She lays beside me in bed, kneeding her sharp little toes into the soft skin of my belly. Her eyes are night sky blue and dusted with stars.

Rose takes Poppy on adventures to gardens or the zoo. She comes home full of joy and exhausted and falls asleep on the couch after dinner. Poppy hurls all her belongings over the loungeroom and sits in her toy box. 

I pick Poppy up from daycare. She runs towards me and we snuggle. My heart explodes. She touched a chicken today, I’m told. Or licked a fence. Or carefully piled dirt on a doll. I wish I could book myself into daycare. It’s been a long time since I touched a chicken. She cries for exactly 1 minute, then falls asleep on the drive home, every time. 

Birthday mornings are presents in the big bed. Rose wakes is all for the minute Poppy was born. Star tears a little corner on the gifts so Poppy can unwrap them herself. Poppy tears apart the wrapping with a huge smile. She gets duplo, a wooden toy, an octopus bath toy, a frog book, wooden whistle, small trampoline, and baby bike. Everyone decides 7am is too early and goes back to bed for more sleep. It’s a good day. 

Happy first year, little love. You are my bright and shining joy. 

Storms

It’s been a long week. Painting lifts me out of myself, is a balm to the distress. The storms in my mind ease. There’s been so much sadness lately, and such hard work.

I went and cried in my GP’s office earlier and she was impressive. She gave a hug, diagnosed me with exhaustion, and got me a cup of tea and a biscuit while I recovered in the waiting room. That’s how you do it.

Quality of care like that is rare and precious. So simple and yet underlying the simple act of kindness is a whole philosophy of equality and value, and a host of complex personal skills that are difficult to teach in the way we traditionally teach people, and frequently undervalued. 

Tonight Rose walked Poppy to sleep in the pram and we both painted. Radiohead playing in the background, a little wildness in the corner of a very domestic life, a stolen hour outside of our roles. Skin hungry we reach across to touch. My soul cries out for nourishment and my heart for rest and safety. We both breathe in the night and the paint on our hands. A friend drops by with birthday treats for Rose. There’s so much beauty here, so much love. We’ll be okay. 

Birth Workshop

I had a beautiful, and traumatic birth with Poppy. It’s complex. I was glad to have the opportunity recently to attend a birth workshop with Rose and unpack some of my experience. If you’re in Adelaide you’re welcome to attend the presentation of our group’s reflections this Wednesday. Details here.

Poppy fell asleep in my arms in our last workshop. Rose snapped this shot of me while we were meditating. She is the most beautiful, joyful, tender heart of my world. It was precious to reconnect with that sense of the sacred that was so present when she was born. 

Star needs surgery

Our lovely Star has badly injured her knee while sparring in her Taekwondo class. A black belt student accidentally kicked her with so much force it’s ruptured the ACL, torn cartilage, bruised the bones, and sprained another ligament. She’s spent a week in a splint from her hip to her ankle, another week going around to medical appointments, and is now in the care of a physio and walking short distances. The knee has begun to seize so she’s on a program of gentle exercise, rest, and ice to squeeze the fluid out of the joint and regain some of her range of motion in preparation for surgery. 

She will need a reconstruction of the ACL, which is done by harvesting from her hamstring muscle/s. Until then she is not able to do any sports or other activities apart from walking. 

This would be tough for any young person but there’s an extra dimension for Star. She’s been struggling with back pain since she came into our family, and we found a gentle and skilled osteopath to support her. Her assessment was that the pain was being caused by chronic muscle tension – related to trauma and anxiety. (On a small level we all do this when stressed – grind our teeth or get tension headaches. Some of us hold more tension through all our body and unless we take care to tune back in and ease the muscles, we can suffer terrible pain as a result) Star’s osteopath eased the pain with massage and recommended a regular exercise program. 

It took a long time for Star to find something she felt comfortable with and we were surprised to discover she turned out to love and excel at Taekwondo. She’d recently graded, getting 94% and progressing to yellow belt. She was in the process of arranging to train an extra day a week, as well as taking on a yoga class with me every fortnight, and with the regular exercise was no longer needing to see the osteopath.

I can’t emphasize how essential care of your body is when there’s trauma or anxiety. I didn’t know this when I was young and went on to develop fibromyalgia and suffer intense pain for many years. Posttraumatic stress is a risk factor for fibromyalgia. I’ve been thrilled to see Star’s back pain reduce and her sleeping improve, and I’m daunted by how we’re going to manage now she’s only able to walk.

It’s looking like it will take a couple of years for her surgery on the public system wait list, so we are currently exploring ways of funding it privately. It will cost about $9,000, plus rehabilitation. Unfortunately when I sought private health cover we were unable to include her in our family cover because she is not our biological child, and she was too young to sign herself up independently. So we expect to have a little cover through the sports club insurance, but most of the cost we’ll need to arrange ourselves. We’re still figuring that out. After the surgery she will still be off sports for another year while her knee strengthens. 

It’s been a big blow for her and us. But we are doing our best to support her through it and scaffold her with the resources she needs to recover. She’s had the most incredible response to it, from using breathing techniques to deal with the initial severe pain while waiting for the ambulance, to her resolution to practice life skills for when things don’t go according to plan. Her willingness to accept and embrace her own real, painful feelings but also look for the positives is admirable. I am so proud of her. We never choose life experiences like this, but we can learn a great deal from them, especially with some support to process and reflect. So that’s what we’re doing!

In sickness and health

Poppy and I yesterday, visiting hospital. Rose had a very long day of health tests, and one of my best friends had a miscarriage. There’s been a lot of sickness and loss in my world lately. I’m heavy with sorrow and doing my best to be with the people I love. No one should have to endure such things alone. Always my heart aches for the people alone in the ED, especially the elderly. I’m struck by how often I’ve done this, on my life. Sat by the side of someone in pain. And how lucky I’ve been to have someone there for me, holding my hand, parking the car, remembering what dates symptoms started. 

I had a dream the other night that I opened a whole new part of my business, offering personal support for people. I’d done doula training and was there for people in birth or death or at other vulnerable times – at the dentist, getting a pap smear, navigating a psychotic episode, dealing with a severe pain flare… All things I’ve done and learned to do to a high standard in my personal life (although sometimes impaired by my own crises – I’m sick and pretty exhausted this week, I doubt I’ve been at my best in this role). In my dream, I called this work ‘Life Support’ and I could be there myself or teach people how to hold the space for their own loved ones, and of course, themselves. It was very beautiful, hard but very satisfying work.

Rose and Poppy are recovering from the flu at the moment, and Star and myself have head colds and sinus infections. I spent half of today in bed feeling very sorry for myself. Days like today I’m glad I often work from home, my desk is next to the heater and piled with tissues – I’d certainly not want to bring my bugs into an office. It’s not pretty at the moment, but we’re patient and it will get better again. 

Being Human

Today I fell in love with a poem by Hafiz – “The beauty of the mountain is talked about mostly from a distance…”

I baked chocolate chip cookies because sometimes everything is wrong with the world and baking is one way I can put some tiny corner of it right.

I sat in a hospital with one of my best friends, chatting about art and life and other inanities to while away the hours waiting for a doctor.

I kissed my darling Rose, who has the flu, on her cheek. I wiped Poppy’s nose – she also has the flu. I nursed and nursed again.

I read two articles about focusing that spoke to me, one about bringing more awareness to your sensations of pain to help reduce the intensity of the message (The Paradox of Pain) and another about compassionately engaging with your inner critic (How to Stop Being Bullied – By Yourself).

I’ve done what I’ve done for so much of my life – been the support person, learned, reflected, organised, been present in many different ways, imperfectly but sufficiently. Tended.

My garden is full of dead roses and jonquils and the first of the weeds brought out by the rains. I cleaned up the backyard recently so Poppy could play and Star who is injured, would have a nice place to sit outdoors that’s close by.


There’s a lot of pain in my world of late, but there’s also peace and even contentment. Some mornings it’s taking me an hour of crying to get out of bed. I’m training my thoughts towards the beautiful things in my life. Giving myself rests between holding up the sky. Writing in my journal with my bone pen. Falling in love with ancient poems. Meditating upon what it is to be human.

New Oil Painting

Today I started a new art class at the Adelaide Central School of Arts. We’re learning the techniques of the old Masters, copying an old artwork on the process. This is how all apprentice artists used to learn, back in the days of guilds.

The smell of the paint is beautiful. Choosing the artwork to copy was difficult. I was drawn to a child, and to an elderly beaded man, and a young man in a green velvet coat… But chose this woman (on the left) with her flowing gown.

This is just the underpainting, a wash over a ground, designed to start setting the tonal value of the work. Next week we’ll add the light areas and the following week begin painting skin tones.

It was a pleasure to be among artists again, I have felt lonesome lately. The teacher was engaging and not too intimidating, and the rest of the class had a good vibe, friendly and ernest. I’m grateful and looking forward to the next one.

Together we are stronger

It was a good day and at the end of it, I’m snuggled into a warm bed with my daughter. My heart is so happy and so damn proud. My family have been through an awful few weeks. We’ve been really hurting. A great deal of loss and sickness and heartache, one after the other. Yet here we are, holding each other gently. Listening and learning and finding what we need. There’s been a lot of self care, reflection, debriefing, and making space for big, painful feelings going on. We are an amazing team, I’m really so in love with us. My heart is full.

Pain

I’m just going to lie here and try to remember that I am an okay person and all the pain and darkness in the world is not my fault and does not need to live within my skin. I’m just going to lie here and feel the tension of public life like a child trying to decide whether to tell the adults about the bad things happening, wondering what it costs me to be honest or to keep secrets, in my heart I’m walking the ocean alone by the sea grass and the pelican bones and I’m so flooded with ghosts I’m choking on them.

I’m just going to lie here and try to follow instructions, recall my successes and my skills, feel them in my body in my breath, in the bones of me, really feel them. I’m just going to try and stop the avalanche of self hate and darkness and failure that’s killing me that’s making so much noise I can’t hear the sound of my own tears falling or the breaking of my heart.

I’m just going to lie here and breathe and remember that I’m not alone and that my darkness is not even mine, it is ours, that I’ve borrowed it from one neighbor and it will pass from me onto another, that it climbs in the chest of all people on one night or another and turns us in violent panic against ourselves.

As I lie here I can feel myself moving in and out of anguish like the tide or waves of darkness or sex or rape. Self hate changes to deep sadness, to a howl of anguish that is somehow cleaner and deeper a wound but cut so far into the heart of me I can’t bear it and go back to self hate and the drums of war in my flesh.

Some days all my dreams are broken ships or wounded satellites, falling. I find myself walking a strange world dressed with lies I can’t believe and people who cannot love or speak the truth. My hands shed despair like skin or shadows and I remember that this is part of what it is to be alive, the anguish in the night and the sad wild cry of gulls and the body broken. I withe on my rack because we do not do pain in public in our world, we do not howl at graves or beat our breasts at funerals, we do not cry at work or scream at school or cut ourselves on campus or we’ll be escorted off and banned and no one minds terribly if you kill yourself as long as you don’t do it on public property or let your kids find you. It’s a strange and broken world and I’m just going to lie here. I’m just going to lie here.

Watercolour mixing chart

I have a new lovely set of watercolour paints, and I’m creating a number of charts to learn how the colours handle and mix. This one is Ultramarine Blue, being mixed with every other color in the set of 45. I prefer inks to watercolours, they are even less forgiving and more vibrant, but it’s still a medium I enjoy. I took a class recently and painted some chickens. The light to dark sequence of paint application was a bit mind bending after doing so much oil painting which is often the reverse, but pushing the limits of my technical skills is great fun. There’s something quite joyful and meditative about colour charts.

Robert Oster Inks

I received some beautiful new inks by local maker Robert Oster and I’ve found a little time carved from work and family and sleep to paint and play. Aren’t they stunning? I’m thrilled, and it’s very special to have inks made in my own area.

Lovely Star suffered a bad knee injury at Taekwondo the other night and our whole family spent all night in the hospital with her. We are still such a young family ,(she only came to live with us 18 ago) all the time we encounter new situations and have to decide how we will deal with them. We decided that everyone would come and be together. It was a long night but we kept our spirits up. She’s home now in a splint that goes from her hip to her ankle. She was amazingly tough, using breathing techniques to manage the pain of damaged ligaments and dislocation while waiting a long time for the ambulance. She’s navigating the loss of independence and needing help with everything with good grace. I’ve taken some time off work to help care for her and we’ve borrowed some movies, and friends have been visiting. It’s miserable and painful, we’re waiting for a referral to an orthopedic specialist to find out how badly it’s been damaged and whether it will heal on its own or needs surgery. 

It’s been a challenging few weeks, Rose is recovering from her heart problems, and Poppy is still getting over an ear infection and tonsillitis. I’m a bit up and down with so much going on. Snatching time here and there for a little art helps keep the lethargy and greyness of depression at bay. On the bad days I cry a lot. On the good days Poppy and I dance to music in our socks. Either way, there’s dishes to be done and nappies to be washed and the ceaseless clockwork of keeping a household functioning. The rage has eased and I’m much more patient still. Rose tries to create time for inks because, she says, when there’s art on my day, I’m my better self for all the rest of it. Kinder, wiser, gentler, more grounded. My heart was green and teal and tranquil and my brush flowed.

Ink on my fingers

Today was lovely. Rose is on the mend. I’ve taken a few days off work for everything not urgent, and rallied the tribe to help keep Rose and Poppy company during the couple of meetings or gigs I needed to attend. I’m feeling better myself after getting a bit more sleep – Poppy seems to have reached her sleep regression a bit early, she’s stopped one of her day time naps and is sometimes up in the small hours too. Last night Rose walked her around the block so I could rest up a bit too after cluster feeding her in bed for several hours, and today Rose slept while I looked after Poppy. 

My headspace crashed when I got sick too, but today I really enjoyed myself. I am feeling a little obsessive about some new art supplies and enjoying researching them and how to use them. I played with inks and typographies, and got back onto Pinterest. I’ve also been cooking the past few days which I love. I’ve made warm chicken salad, cauliflower soup, warm pumpkin and sweet potato salad, and pear and rhubarb crumble. As much as I love working I really do enjoy some aspects of home life, and I’ve missed cooking. We are now looking at doing a bit of a roster for cooking because Rose appreciates a bit of time off and having a nice meal made for her too. 

It’s also been really nice to hang out with Poppy all day. She finally fell asleep at 3pm after being grouchy all day and I tucked her up under a blanket and just snuggled her on my chest and smelled her hair for an hour. It was magic. Star and I walked with her to the local playground and we planned parties. Star, Rose, and Poppy all have birthdays within a week of each other! This will be our first year trying to balance them all. I’m determined to make sure all my girls feel special.

I’m also looking into professional development opportunities, trying to figure out which skills to strengthen for my business. There are some very interesting graphic design, illustration, and media communication courses out there, but so far nothing part time or flexible enough to fit around my work… Doula studies also really interest me but the unpredictable career seems challenging to combine with my other responsibilities. Community consultation has been an incredible joy to be part of, but SA is a small pond for work like that. Extending my skills in service design and evaluation, and organisational culture could be an excellent fit, but again the career is a little uncertain. Certainly there are books calling my name to write them, but only madmen consider writing a viable career. I’d love to add some more skills around arts administration and curating too, and graduate level public health is interesting as is community development and policy writing. I just can’t quite see where my next step is or what my particular career path might look like, so it’s hard to know where to prepare and what skills to strengthen. Hmmmm! 

I’m ecstatic to be working full time between my various skills, and determined to grow my business. I’d like to be secure enough to move my family into a larger home in private rental, and to wean off welfare as much as possible. Currently I’m supporting Poppy to have swimming lessons and keeping a second vehicle running for Star to have driving lessons in and I can’t tell you how proud that makes me. I went to the chemist when Rose got sick and pulled $100 from savings and spent it all on medications and vitamins and probiotics and didn’t need to go without a basic need to do so. I don’t really recommend adopting a teenager, having a baby, and starting full time work within the same 18 months, it has been brutal at times and the bad days are pretty black. I have never worked so hard in all my life. But it’s also wonderful, so many dreams come true. I endure the bad days with help from friends, and soak up the rest as best I can. Keeping a small person (and the rest of us) alive for a whole year feels like a massive achievement and I’m looking forward to celebrating it!

Nursing Rose

My darling Rose is sick. Tonight we’re tucked up on the couch with cauliflower and bacon soup, watching Harry Potter. 

That’s a considerable improvement on last night where she was hanging out in the ER and I was shuttling between her and the girls at home. Fortunately nothing is seriously wrong, and with a few weeks rest she should be feeling a lot better. She went in to have pain in her chest and leg investigated in case they were a heart attack or a blood clot. The chest pain turned out to be inflammation in the lining of the heart, and the leg they believe is a ruptured cyst. Both painful but not dangerous. She’s feeling pretty miserable and has also come down with tonsillitis, poor love. It’s really not been her year, she’s had so many health challenges and difficult circumstances to navigate. She’s still an incredibly devoted parent but is needing some extra down time and support. Fortunately work are understanding so we’ve both taken a few days off. Poppy missed us both badly and has been really unsettled today and struggled to sleep orv play by herself. So we’ve cancelled day care tomorrow to give her some extra snuggles and hopefully with some love and rest we’ll all be feeling a lot brighter very soon. 

My lovely Rose

I came home from work the other day to find Rose sick and tucked up on the couch under a blanket. I washed some dishes and made dinner, which is always a bit tough when I’ve been away all day because Poppy is so sad that I’m home but still trying to do other things. I nursed and cuddled first, and played and sang to her while cooking but after awhile it wasn’t enough and she was crying holding onto my leg. Rose got up and tickle-chased her around the house. My home rings with baby giggles and whoops of delight and I feel like my heart is going to burst.

It’s been one hell of an adjustment, this year. Brilliant, but huge changes and new skills needed. I had a great conversation with my shrink my other day who helped me get out of a hyper-critical mindset I’ve been stuck in and my heart is so much lighter. 

Rose and I have been hurting, feeling like however much we love each other, our relationship was withering. A desert was opening up between us. We moved between talking about love and marriage and having more children, and wondering if we might break up and fall apart, bewildered by how our relationship has changed so much in such a short time. And under everything else has been a kind of fury in me, killing every living thing around me. Every day a few more trees dead and the desert a little bigger. 

Fear will do that to do you. I want to be good enough. I want to keep my job. I want to get my family out of poverty and cramped public housing. I want to raise my girls well. When I’m terrified I’m not good enough, when I feel like I’m straining under a load too heavy to carry, when I’m giving everything and it’s still not right then terror has teeth in my soul and a kind of violent frenzy grips me. I try to succeed through criticism, motivate myself through brutality. Every imperfection is magnified and my campaign of self improvement is bloody. Every error I make – or Rose makes – must be corrected immediately or we will live like this for the rest of our lives. There’s no time to learn, no space for growing and talking over and trying again. Gone is the beautiful ‘muddling’ of our pre-parenting days. The stakes are high and perfection is the baseline of acceptable. 

We tear apart. Even when I bite down all the harsh words and speak none of them, my rage boils just beneath my skin and we can both feel it. I burn like a nuclear bomb and the fallout is soft, silent, deadly, and widespread. 

We talk bewildered. Why? What’s happened? I used to be kind, now I’m scary. The word abusive is brought into view and something in me drowns in tears and despair. It’s true. How did this happen? Why am I like this? How do I stop? What’s happened to me, to us? I used to be her safe place. I hate myself. I cut deep into my own heart, looking for the cancer. Trying to be better. Imsorryimsorryimsorryilltrytobebetter. Self hate and rage and terror add intensity. She has nightmares of me. The desert just keeps growing.

Stop and look at what you’ve achieved, says the shrink. Tell me about your skills and success and accomplishments. Vividly. Feel them, in your heart, in your body. Embody them. Bring them from head knowledge into the rest of you. Every time the criticism, anxiety, or despair comes. Remember your successes. Be kind to yourself and to her. Go back to your healing roots. Get away from delusional self improvement, terror of failure, and brutal perfectionism. 

I come home and we sigh with relief, hold each other tight. The war moves away, out of my skin and bones. No more nuclear winter. The rage leaves like a bad memory of a dream I once had. We touch again, unthinkingly, lightly, like leaves falling. We kiss. When she’s hurting I feel only compassion. I can see how hard she’s trying and how battered her heart is. Her brilliance begins to shine again. She can think more clearly around me, show her strengths better, be more competent. I can see how skilled she is, how amazing she is. I fall for her all over again, her eyes like hazelnuts and green pine bark, her hair a halo of curls. She crawls off the couch and chases Poppy around the house, who squeals with delight. The forest fire stops raging and I become a small fire in a hearth once again, bright and warm and safe to be close to. Banked against the cold night and able to roar if needed, but not burning down the house.

Life becomes a joy again. There’s pain around me, confusion, darkness, death. But a relief bubbles up through it all. She’s my Rose again and I’m worthy of her trust again. She lights down in my heart like a bird nesting. My demons murmur but they don’t run the parliament. The darkness is there between the stars in our eyes, the taste of death and blood. Our hopes like ships upon the waters. The smell of our baby in my arms, milky kisses on my cheek and the quiet steady ache of my arms to have her in them. Finding my way back to connection for each of my precious family. Remembering laughter is what makes the night shorter and less savage. 

And I’m blemished but no longer the snake in our nest. The knife in my smile is sheathed. She doesn’t flinch when I walk near, my beautiful love, my beloved. In her bad dreams she stirs and I wake. She reaches for me in her sleep, fingers tangled into fingers. My heart croons peace to hers like a dove. The joy in my world is like the moon rising. She rests her head against my heart. She rests her heart within my arms. I’m hers again. I’m hers. 

A good day

The perils of a home office in a very small house…

Rose and I have had a beautiful day. There was a lot of anxiety for me but I muddled through it and I’m proud of the work I did today. Friends with good news visited for dinner. I made risotto and between us Rose and I got half the collection of dishes done, and 4 loads of laundry away. Poppy tipped a leftover bowl of milk and cereal on the kitchen floor, then jumped on the soggy sliced bananas in her socks, squealing with joy. There’s been hugs and gentle conversion and connection. It’s been a good day.

Free things

I have had an absolutely wonderful day. Rose and I took Poppy to swimming classes this morning. Then there’s been cleaning and organising, researching of paint and other art supplies online, and dinner over a movie in our tidy loungeroom. Poppy is asleep on my lap, boxes of things are away on the shed, my studio has had some loving attention, and all is right with my world.

Yesterday was tough which I expected, we were switchy and anxious and teary for lots of it, sleep deprived and happy-sad about a big work event we completed. We tried to sleep but couldn’t, got overwhelmed by work emails coming in, took Poppy to the park and just hid from all the stressful things for a bit. Today we’ve ignored everything work related and focused on home and it’s been blissful. Rose and I are watching Anne of Green Gabels (Anne with an E) on Netflix, which reminds us so much of our own childhoods as well as taking in Star unexpectedly. It’s beautiful. I see so much of our lives in it. It’s been a glorious day.

Oh, I have a few things surplus to requirements which I’m going to donate to the local op shop unless someone would like them. Free, pickup near Adelaide or cover the cost of the postage. I’ve squeezed tubes and shaken tubs to make sure they haven’t dried out, but I haven’t tested for any separation of pigment and binder so I’m not guaranteeing anything, some of these are pretty old. First in, best dressed. ❤

Update: all items gone

Used folk art artists acrylics

Small metal enameled pot. I was using it as a pen holder.

Acrylic paint set, new.

Mont marte slow drying medium for oil paint

Water based satin varnish, acrylic paints, used.

Mainly folk art paints, used

Watercolour paints new

Jo Sonja’s Retarder medium, new. Glass and tile medium, used. Decopage varnish, new.

Mainly folk art paints, used.

If you’d like something, send an email to sarah@di.org.au so I know who asked for what first. x

Vincent Van Gogh Exhibition

It was beautiful and I’m glad I went. It was my second trip to the National Gallery of Victoria. The first was a number of years ago, my first ever interstate talk. I was not paid for the trip but my expenses were covered and I was so tremendously excited to be there. I was also so star struck and in culture shock. I grew up poor and have generally had little money. I was put up in a hotel and that was my first experience of it. I felt awed and excited and confused about all the things it was assumed I would just ‘know’. I was actually bouncing between backpackers at the time and had no stable accomodation. I finished the last artwork for my talk 15 minutes before I left for the airport, and had to negotiate a suicidal crisis with a family member that afternoon. I’ll never forget the talk though, I received a standing ovation and so many hugs I went and hid in the toilets until everyone went away to the next presentation! I’m working on a talk at the moment and reminding myself as I care for Rose who is sick and deal with my usual anxiety and imposter syndrome that I’ve never done any of my work from that mythical place of life being easy. I’ve given talks while homeless, run groups about being queer before being out in my own life, navigated intense caring responsibilities and part time study at university. None of it lowers my competence, it is in fact the massive experiential education I’ve built my skills upon. It’s just left some scars in the form of anxiety and pressure and very high expectations of myself.

Back in Melbourne for that interstate talk, someone kindly paid for a ticket for me to see an exhibition of the Masters at the gallery the next day. I was stunned by how beautiful these works were in person, how vibrant compared to the flat photographs and prints I knew. I thought I knew the art but I’d never really seen it. I had a strange conversation with the kind person about what constituted ‘real art’. They contended that art needs an audience before it can be art. I thought of my box of ink paintings and my journals of poems and felt in my bones they were real art whether anyone else ever loved them – or even saw them. What else could they be? They helped keep me alive.

I was ambivalent about going to see this exhibition. I like Van Gogh. I am a Romantic at heart and there are few artists with more romance about them. He was generally disregarded at the Art school I studied at. As were most of the artists I most admire and revere. As was my own work at times.

I remember once, when I was 17, speaking to a poet who had an English degree. He hated my favourite poets, and hated the way I was using the word ‘poet’ to mean not a wordsmith but someone who looked at the world differently, lived more deeply, felt more passionately. He was not cruel but perhaps a little vain and insecure. He told me that he’d thought the way I did once and knew better since university. He told me Tennyson, whom I loved, was “hardly a world-class poet”. He’s the reason I did not go on to study English. I valued the way I saw the world, and I did not want it taught out of me, certainly not to have it replaced by the empty pomposity of the learned academic. I wanted to still love Tennyson.

I don’t use the word ‘poet’ in that way anymore, although it does apply to some poets, and some people. We use the word ‘artist’ like this a lot in our culture, to mean not someone with technical skill in the application of paint or some other medium, or the communication of ideas or disruption of culture, but as a romantic notion of being more truly alive, creative, attuned to something different, greater, sadder, more truly human. Some artists were like this. Van Gogh was stranger than the memory of him holds. Some artists are not at all this way. Creativity and being alive is not the province of those who learn to sculpt any more than those who learn to garden, or plumbing, or looking after cattle. Everything has a language and we all learn to attune to some and are deaf to others. Some of us are more alive than others, however we spend our days.

I am only now beginning to see where my art lives, what language it speaks. To understand that it is the money and glitter of exhibitions I find so alienating, and that the art I love is almost always narrative in nature. There is a poetry in it, a story it is part of. Vincent’s works are so deeply embedded in his pain and failure. The exhibition tracked his hopes as he explored different styles and mediums, trying to find something that would sell. The plea for more paint. The images painted of the gardens in the asylum.

I once spent three weeks wanting a tube of paint from the local news agency. I was incredibly broke at the time, rent and bills consumed every dollar I had. The paint was purple and it cost $3. I yearned for it and finally bought it. When I got it home it was barely useable. The pigment had separated from the binder. Being acrylic it was possible to partly remix it, but the binder had thickened and it was very poor quality. I was so disappointed and too anxious to return it to the newsagent. It had probably been on their shelves for many years.

So much of what we think of as the spendid, divine talent of artists is simply practice, access to good teachers, and money. The ability to reproduce scenery, capture a portrait, or express an idea can be little more than trickery. Illusions of flowing cloth represented in stone. Pigments smeared into each other to mimic clouds. There doesn’t have to be any soul to it at all. And some with great soul, with deep heart, have no obsession with light or colour or paint or theatre or any of what we think of as creative pursuits. They spent their days trying to recreate the DNA of extinct frogs, or raising children, or sewing clothes.

Vincent doesn’t alienate me because he also knew obsession and poverty and failure. His story overshadows his art at times. The exhibition was intensely crowded. We waited in mazes that thinned and became so tight I could barely get Poppy’s stroller through our lane. The first room opened into an auditorium, and David Wenham voiced Vincent, reading letters to his brother Theo. The letters are like poetry, dripping with his hopefulness and sadness and his deep connection to the places he painted. I sat at the back and nursed Poppy to sleepiness, then strapped her milky and drowsy onto my back. We passed prints, plucked from Vincent’s massive collection as examples of the work he collected and wallpapered his studio with. Someone frets behind me that Poppy is leaning back too far and may fall. Another man complains loudly that the prints are not even genuine art! Just replications. I investigate several very closely. They are genuine prints. The strangeness of the crowd is as much part of the experience as the art on the walls. Much patience is needed to view the art, and the pathway is not linear but splits and branches. If you want to see all the works you must retrace steps and double back. There’s a commitment needed.

“One must work long and hard to arrive at the truthful. What I want and set as my goal is damned difficult, and yet I don’t believe I’m aiming too high. I want to make drawing that move some people… I would like express not something sentimentally melancholic but deep sorrow. In short, I want to reach the point where people say of my work, that man feels deeply and that man feels subtly.”

Vincent’s works themselves are grouped by season, starting with his favourite, Autumn. The explanations and stories about the works are placed on plaques at their feet. The crowds stand in front of the plaques to see the art on the walls. Children cluster in front of them, reading notes intended for them to engage the art. The oil paintings have large crowds. The sketches are often void of people. I am patient and visit every work. Poppy sleeps on my back.

The clouds are so intensely white they glow. I don’t know if he was using lead white and this is the cause, or technical skill, or the lighting in the exhibition, but it is memorable, an effect totally lost in all reproductions I’ve seen. Theo encourages him to paint with more colour and vibrancy. Almost all of Autumn is terribly shadowed and dim. Beautiful, but sad and dark and unpopular works.

Poppy wakes in Spring. I’m particularly drawn to this painting of wildflowers. The blue background is such a beautiful colour, so like his skies. The poppies are so vibrant. I buy a print of it to take home to Rose. I am moving my art prints out of our lounge room to make space for our family photos. I don’t know where I will hang this one, but it will be a lovely memory of Poppy’s first exhibition. Poppies are part of our family story in so many ways.

There’s so much sadness there. Twice I cry, standing pressed in the crowds with my baby sleeping at my back. Incongruous in the bright lights. I step away into corners and write notes on my phone, capturing reflections. I am learning to do that again, reaching back for the thing that is more vital to me than breath. Gasping back to some kind of life.

One person said to another – how sad that he died so young, we could have had so many more beautiful paintings. Another that it was a disappointment, too many obscure works and not enough well known ones. Many complain about the crowds. Their feelings and faces and opinions press in around me like water. I stand there with tears on my face, feeling cut open.

Exhibitions usually terrify me or leave me cold. They are a shrine to success and money and brilliance. I feel small, bewildered, outraged within them. The art feels dead and trapped as butterflies pinned to a board. I hate the way they make me feel so empty. I have been investigating this for years, why I feel the way I do. I have felt embarrassed and ashamed of my reaction. It’s assumed that as an artist, I love art and exhibitions and connect with them. Art school was a painful miserable trek from one horrible exhibition to another. I was delighted to attend the first exhibition I felt some kind of connection with during that time – The Black Rose by Trent Parke. Afterwards the tutors complained about it over coffee. I told them I loved it. One said it was “art for the lowest common denominator”. They derided the very thing I celebrated – that it make some kind of sense to people who attended, that it spoke to me in some way.

How embarrassing to love Vincent. More than that, to cry over his works, his sad stories and poetry about walking in the fields and trying to paint the orchard blossoms before they fell from the trees. How very Anne of Green Gabels of me.

To still love Tennyson, Owen, Slessor. My walls have Waterhouse on them because the Lady of Shallot was the first painting I fell in love with, down at the Brickwork markets some kindly person with a little poetry in their soul saw me entranced by her and told me the story behind the artwork and I was smitten. The love remains although I now know her image is on a thousand walls. Ophelia joined her. Turner, who someone once told me was the equivalent of ‘hitting a canvas with a sock full of paint’ spell bound me at the local gallery. My tastes are populist, inelegant, unsophisticated. Leunig, who my drawing tutor told me ‘cannot even draw’, I discovered at 14 in a second hand bookshop on a trip to Victoria and fell in love, standing in the door way in tears. I spent a weeks income to buy the book. I was the only person in the poor suburbs to have hired Hamlet from the local video store in 10 years. On my 5th hire they simply gave me the movie and told me to keep it. Roman Polanski’s four hour version, true to the original play word for word. I used to know the entire play by heart. Shakespeare alongside Vincent. Literary and artistic greats alongside the popular and unknown. All united by a common theme – they speak to me of what it is to be human. Not only the successful or the masterful speak of that. The amateurs, the failures, the madmen, the women, the boy who tags his name on the railway fence because claiming some small place in this world is what is keeping him alive this week – all speak of what it is to be human, while some of the ‘great masters’ say nothing at all in a language I can understand, and trying to understand them just makes my heart feel sick and lonely.

Some artists embrace me. Tim Burton’s simple sketches from school and college that have years later been given such fantastic life made me feel not alienated but included. Amanda Palmer who considers all her fans fellow artists. Generally I avoid exhibitions because I feel cold inside and can’t make art for weeks afterwards. Studios have the opposite effect. If exhibitions are all dead butterflies, in studios they are still spilling across the skies and I see the artists soul and delight in the creation and possibility of art.

Romantics can be dismal artists at times. We are so bound by the story and so dazed by the halo that we struggle to see the art itself, to see shrewdly like an art dealer or pragmatically like an apprentice. In every exhibition that showcases success I am haunted by all the failures and art unseen hidden in the wings of the pantomime. There are a million Vincent’s out there, there’s the tragic thing. A million people who are trying to live with passion and soul who feel invisible and who’s work is not valued. I know what that feels like and their voices call to me within the glitter, their shadow lies cold across my soul.

I am learning what it is I need to do to feel more comfortable with showing not just my vulnerability, but my skills and successes and the answer is the same as it’s always been – authenticity. I learned long ago that sharing my successes was risky, that showing my skills and acing tests cost me friends and I have been lonely to the point of despair. Growing older I have been the reverse of ‘public’ and ‘professional’, hiding success and showcasing distress. They meet in the middle, sides of the same coin. The things I am reluctant to speak of cast shadows of their own. It is easier for me to admit to anguish than write a bio or resume that shows how amazing I am. Yet these things are also true and also in their own way, vulnerable and difficult to speak of. I never give an art exhibition that tells one story. I choose a theme and then I explore it from many angles, anguish is displayed next to whimsy, the bizarre alongside the beautiful. I am learning how to show competence in a way that still feels human, to talk about my successes in the same breathe as my pain.

I once gave my first interstate talk, unpaid and far from home, my heart heavy with fear and responsibility, my artwork hurried. It spoke to people and they came to me afterwards to touch me, to tell me their stories with tears in their eyes, to press scraps of paper with their thanks scrawled on them into my hands. It was an overflowing beyond anything I had experienced and the intensity both overwhelmed me and thrilled me. To connect with people like this, to touch on pain, shame, hope, and bring us back to a place where it is safe to be human – it was the most frightening and joyful act of creation. It is still that for me! Holding a space to be human is the heart of all my work, my art, my relationships, the through-line that connects so many disparate projects and ventures.

Vincent’s humanity is so very evident in his work, both his skill and his vulnerability. The loneliness and yearning and bewildered failures alongside the deep connection to life. He suffered and yet he was also moved by life in ways that many of us are not, sensitive to things we can no longer feel. We pity and envy him, the man who painted the gardens of the asylum. Success is a strange thing, it draws us in like fish to a light, but it also burns and alienates us. We are attracted to it and yearn for it at the same time as it sucks us dry and makes us hate ourselves. Failure is confronting, disgusting, frightening, yet also strangely comforting, a kind of brotherhood. So we thronged through the exhibition and look for ourselves in the paint and inks. Is there beauty here? If we never reach the heights of success, is there still value in our work, and meaning in our lives? Such questions to ask of dead artists. Most us walked past an artist busking at the door, reproducing Sunflowers on a large canvas. I don’t know what his name was but it was not Vincent so we asked no questions of him. My tutors hated that Vincent had become a romantic myth. I find our attraction to his story curiously beautiful. Our culture is not often kind to failures or even much to artists. Yet we stood in lines patiently to crush before his work. All of us, like Vincent, looking for something, drawn to something.

Home again, home again

Safely home from the most wonderful trip now, and back into the throes of admin. But I’ve started reading again and I’m so happy about it. 4 books on the go currently, all amazing – Unseen Academicals by Terry Pratchett (magnificent fiction with a physical and fantastical bent), Somebodies and Nobodies by Robert W Fuller about the essential nature of rank and the hidden abuses of rankism, The Peter Principle by Lawrence J Peter about the inevitable incompetence built into hierarchical structures, and The Brainy Bunch by Kip Harding about an unschooling approach that swaps high school for college and supports kids to follow their passions.

Today I input a years worth of income and expenses. Go me! Accountant appointment first thing tomorrow. It was good to take a real break from all this, my head is much clearer. Just have to get through everything booked into the end of this financial year and I’ll be happy as a mudlark. But for now, it’s date night and we’re off to the late movies with a sleepy baby and toddler size earphones. 😀

Melbourne by night

This is how Poppy lets me know she’s ready to head out. 🙂

All the cultural delights of Melbourne, and so far Poppy has been most impressed with this port in the floor. 🙂 We had a great night roaming the markets and city.

How to tell if it’s been a rough night number 651: you find yourself googling ‘how to tell if you’re a narcissist’ after broken sleep, cold room, fibromyalgia pain, and a little person with night terrors. Feeling a bit fragile today. Off to see Van Gogh. 

Poppy’s first waterfall

We arrived in Melbourne this evening, after exploring a beautiful waterfall on the way.

Also bought a cute hat. I like hats. We’ve had long chats in the car, bagels with cream cheese and ham, tangelos, and a long soak in the nicest bath I’ve ever been in. It’s a bit cold and achy but I’m very happy to be here.

Poppy and I visit Melbourne

Here we are sharing a chocolate cherry waffle on the way!

We are hitching a lift with friends and going to spend the long weekend in Melbourne. Rose kindly set up the trip to give me a proper rest. Mammoth work projects and end of financial year business admin has been taking a toll. Even more pertinent, Van Gogh is being exhibited at the NGV and it’s not often in your lifetime you get a chance like this!

So we’re all packed and off on an adventure. I’m nervous and excited and don’t quite know what to expect traveling together. Rose has held my hand through all the jitters and worry about traveling and how much still needs to be done at home. Now I’m feeling free and light and hopeful. Getting back onto this blog has been wonderful, even though there’s so much pressing work. I love to feel connected to my online world, and to reflect on what has been and what’s yet to come. It calms me and give me focus, helps me find my connection to myself again. 

I feel alive again. I get lost and find my way home, over and over. Right now I feel alive and bubbling over with joy.

If you’re in Melbourne this weekend and want to catch up, sing out. 🙂 

The Multiplicity Project

I created this project for a grant application for a study tour exploring alternative approaches to mental illness. Although shortlisted, unfortunately my application was not successful. However in the process of pulling together the project, there has been considerable interest and excitement from the Multiple community as well as others in mental health and arts. So I’m sharing the project outline because I feel confident that it will find a ‘home’ sometime soon. It may be modified or broken into smaller projects, perhaps more done online than in person to reduce costs (in person has a special depth, safety, and connection though, if I can arrange that). There will be some funding somewhere for it when the time is right.

Having just completed my huge project with the South Australian Mental Health Commission – the initial state wide consultation for the development of the Strategic Mental Health Plan, I am confident I have the skills to undertake a project of this sensitivity and magnitude. More than that, I am passionate about what can emerge as part of a process like this, that listening and understand and connecting are in and of themselves powerful acts that can be part of growth, healing, and life.

Project Aim (ie my goal)

To explore the in intersections between mental illness, mental injury, and identity, through the experiences and understandings of the Multiple community.

This is a highly diverse community including those formally diagnosed with Dissociative Identity Disorder DID (formerly Multiple Personality Disorder), those who self-identify as experiencing multiplicity, and those with different frameworks and understandings such as spiritual possession. People’s experiences range from severe mental illness, poverty, and impairment, to multi-millionaires and founding directors of organisations. It is the perfect community for exploring how diversity and suffering intersect.

Why is Multiplicity an identity – even a ‘super power’ for some, but a catastrophic disorder for others? What role does diagnosis, self-identification, the way we name and frame difference and suffering, and social visibility play in people’s capacity to function? Multiples have a great deal to teach us about the way we approach the human condition, especially diversity, suffering, freedom, visibility, and identity.

Massively misunderstood, stigmatised, under-resourced, and mis-diagnosed, the Multiple community is largely invisible and difficult for researchers to access. I was diagnosed with DID in 2007 but have since recovered: I no longer meet the diagnostic criteria around impairment or distress but still live as a Multiple. I founded the Dissociative Initiative, an international project, and am out about my multiplicity in my public blog, personal, and professional life. I have rare access to this community and deep insight into the challenges, opportunities, and diversity within it.

Project Description (background and how I’m going to do it)

What is Multiplicity?

Dissociative Identity Disorder (DID) is considered “the most severe and chronic manifestation of dissociation”. (according to the ISST-D) Formerly called Multiple Personality Disorder, the experience of having more than one self is sometimes called Multiplicity, Plurality, or possession, depending on the context and speaker. For the purposes of this application ‘Multiplicity’ is being used as a neutral term, independent of theoretical or clinical frameworks around cause or cure. I will also use identity first language Multiples as that is my preferred term.

There is significant controversy about the legitimacy of the diagnosis of DID despite its inclusion in the DSM and ICD. As a result, those who struggle with these experiences face huge barriers to access support services and resources. Additionally a culture of fear and voyeuristic fascination mean most people with the diagnosis keep it secret or experience harm and discrimination with costs to housing security, access to education, relationships, employment opportunities, and parental rights.

Who am I?

I was diagnosed with DID in 2007 following a year long struggle with a psychologist for diagnostic clarity. My story is unusual in that most people with dissociative disorders spend many more years in the system and accrue many more misdiagnoses. For myself the diagnosis and treatment triggered such despair and decompensation that I began a decade long search for useful therapy, research and information from a variety of perspectives. A study of multiplicity has turned into a study of the human experience, touching on neuroscience, philosophy, psychology, art, and many other disciplines.

Through this process I have painstakingly constructed my own understandings of what multiplicity means to me and how I engage it. I no longer meet the diagnostic criteria for DID but remain Multiple – finding myself living in a linguistic gap. I have experienced trauma and been diagnosed with PTSD, and my experiences include instances of homelessness, poverty, domestic violence, bullying, and caring for suicidal family members. I also identify as queer, bisexual, and trans, and I live and act as an advocate across each of these communities. I am ‘out’ about my multiplicity and share my ideas and experiences through a public blog that’s been running since 2011.

I currently work full time wearing many hats (in true multiple style), including consultant, artist, and trainer. I have a queer partner, a baby, and an informally adopted 16 year old.

Why I have unique skills and experiences to conduct this project

I am a highly creative person and communicate through a variety of mediums – the written word, spoken work, and visual arts.

I have excellent facilitation and social research skills. I currently have a contract with the SA Mental Health Commission, designing, training, illustrating, and facilitating the state-wide consultation for the development of the SA Mental Health Strategic Plan.

I am intimately familiar with this community, and have a rare level of access. I founded the Dissociative Initiative and engaged stakeholders in South Australia to develop resources. Through the DI, I admin an online discussion group for and about multiplicity and other forms of dissociation, which has 1,300+ members. I’ve also run a peer-based, face to face weekly therapeutic group through the Mental Illness Fellowship of SA for two years.

Why this hasn’t been done before

The Hearing Voices Movement has powerfully raised the visibility of a formerly invisible subgroup – people who hear voices but are neither distressed nor impaired. They have also campaigned for awareness of iatrogenic harm, ableism (assuming a state of symptom reduction and ‘normal presentation’ is the definition of recovery), and the benefits of supporting people to explore their own treatment options (including non-clinical) and develop their own frameworks to understand their experiences. One key idea has been that perhaps distressed voice hearers have more to learn from the experiences of non-distressed voice hearers than from people who have never heard voices. Another has been that fear, shame, and secrecy strongly contributes to the likelihood voices will be or become distressing.

The Multiple community lacks the coherency, visibility, and voice of the Hearing Voices Movement. There are considerable parallels in struggles and recovery but with a backdrop of disbelief and denial. Massively misunderstood, stigmatised, under-resourced, and misdiagnosed, the multiple community is largely invisible. We appear in a few biographies, as part of trauma conferences in clinical mental health services, hidden in sub-reddit threads and private yahoo groups, as part of deliverance or possession religious ministries, and sporadic services and organisations worldwide.

An even more invisible sub community of Multiples are those who would be diagnosed as ‘other specified’ because their experiences of multiplicity fall short of the diagnostic criteria of DID. Sometimes termed ‘medians’ in self-help groups and alternative communities online, research suggests these people’s experiences are actually more common than DID, yet they appear in almost none of the literature, services, or resources, and most lack even a language or identity signifier to express their unique experiences.

Why it’s so important

There is tremendous suffering and impairment currently being attributed to multiplicity. That someone people are able to live well with multiplicity suggests factors other than the experience itself are relevant.

  • What are the mechanisms of harm?
  • Is there more than one sub-type of multiplicity?
  • Are the key issues related to other risks such as poverty?
  • Are the treatments or conceptual frameworks relevant?
  • Or the social context?
  • If ‘recovery’ from DID is a reduction in distress and impairment rather than a cure and return to ‘normality’ ie single identity, what are the determinants of recovery?
  • What does multiplicity look like and how should we talk about it for those people for whom it does not ever meet the criteria for a disorder?

This is relevant not only to those in the Multiple community but has significant implications for our understanding of mental illness, psychological injury, disorder and diversity across the spectrums. When is something an illness to treat, an injury to heal, a disorder to recover from, or diversity to understand and embrace? If an experience meets more than one of those criteria simultaneously, what language should we use and how should we engage it?

There is also tremendous ambivalence and mixed experiences around diagnosis, clinical treatment, community reaction, and the response of educational settings and workplaces to Multiples. When does this work well and when does harm happen? How can we better support Multiples and reduce harm?

If Multiplicity can exist without being a disorder, does that apply to other conditions? If we can support people towards healthy multiplicity, can we also support them towards healthy Bipolar, or healthy Borderline Personality Disorder? Are there other linguistic gaps for describing the experiences of people who remain diverse but not impaired? Is a continuum of illness/health the most useful tool for framing people’s experiences? If not, what other frameworks and language are people finding helpful? What are our best practices for treatment, recovery, advocacy, visibility, community, and inclusion?

Exploring the context of multiplicity and the intersections with related experiences

Multiples intersect every level of community and socio-economic group, often unaware of, or secret about our multiplicity. We have a strong overlapping presence within and similar experiences to many other marginalised communities such as

  1. The Gender and Sexuality Diverse communities: diverse sexuality and gender identity between various parts are common for multiples
  2. The Autism community: autism and multiplicity are commonly co-occurring
  3. The Disability and Chronic Illness communities: many people with multiplicity also have physical disabilities or chronic illnesses (‘spoonies’)
  4. The Trauma and Recovery communities: there is a high level of experiences of childhood trauma and neglect for people with multiplicity, and very high co-morbidity with diagnosis of Posttraumatic Stress Disorder, to the point that some clinicians believe a diagnosis of PTSD is a pre-requisite for one of DID. Multiples may also be at much higher risk of trauma in some situations.
  5. The severe and profound Mental Illness and Personality Disorder communities: there is high level of co-morbidity with diagnoses such as Borderline Personality Disorder, and research suggests high representation of DID in inpatient populations although often present under other diagnoses. Issues such as access to care, respite, housing, and work are likely to be similar, and institutions such as shelters are likely to be interacting with Multiples regularly.
  6. The Hearing Voices Movement and Psychosis communities: some people who hear voices find the most useful approach is to understand them as parts, some people hear voices as part of their multiplicity. Several leaders in the Hearing Voices Movement have been diagnosed with DID, many more support people with experiences of multiplicity in their hearing voices groups worldwide. Schneiderian First Rank Symptoms, originally developed as a tool to diagnose forms of psychosis, has been found to be more prevalent for people with DID than Schizophrenia. There’s a significant overlaps in these populations.

Like many of these communities, there are divisions and struggles around key understandings of the experiences and ideas of cause, cure, or recovery. There is at times a profound conflict between the need for supports and services, the desire for frameworks to make meaning of experiences and give validation to identity, and the experiences of iatrogenic, social, and spiritual harm.

However there are also people who live openly with their multiplicity, with experiences ranging from crisis, poverty, and homelessness, to multi-millionaires and founding directors of organisations. (This is only one dimension of people’s experiences. It may be that there is a similar level of pain and distress no matter the socio-economic strata, or that there are advantages and good aspects to the less ‘apparently successful’ lives and hidden costs experienced by those deemed to be ‘high functioning’ and ‘less impaired’.)

There is little consensus about why people have such diverse experiences or how to best support those who are suffering. Some find mainstream mental health treatment helpful and others find it destructive or irrelevant, and draw on other resources and models. Some feel that multiplicity is a form of neurodiversity (akin to the approach of autism activists), that the primary distress is caused by stigma and discrimination (akin to the social model of disability) or that like homosexuality it is a natural variation that should be removed from the DSM. The nature of multiplicity is that there is little community consensus about this, and frequently individuals themselves do not agree among their own parts on the framework to understand multiplicity or the best approaches for it. It is a perfect community for exploring diversity.

How I’m going to undertake this project

I will reach out to three main groups; people with a personal experience of multiplicity, people who support or resource people with multiplicity, and people who can speak to the key 6 identified overlapping communities. I will draw upon the principles of Grounded Theory and Participatory Action Research, conducting semi-structured interviews (conversations with a focus) and collaboratively exploring the themes, language, and understandings that arise. I will use my facilitation skills to sensitively explore experiences, beliefs, and language in the context of capacity to function and experiences of distress.

At the same time I will be undertaking a Social Practice Art Project, engaging the interviewees directly in the creation process of original artworks. For some this may be the identification of a key theme, quote, or experience that I will illustrate, for others they may contribute more directly to the creation of the artwork.

People with a personal experience

I aim to interview people across a range of experiences and socio-economic status, including carers, family or friends, or in groups where appropriate.

People who resource Multiples

I aim to interview people who have founded or work in clinical services, alternative communities, and peer based resources such as online support groups.

People in key overlapping communities

I aim to interview people who can speak to key frameworks, struggles and language used to explore identity, diversity, and disorders within the 6 key identified communities.

I have identified my wishlist of people, communities and organisations to contact. Some I have a good relationship with, some have already invited me to be part of events or gatherings, others I have yet to contact. It may be that I discover other individuals or communities through this process I am not currently aware of and I might be able to include visits and interviews with them in my trips.

Wishlist of Contacts with Experience Personally or who Resource the Multiple Community

USA
  • Alicia, lived experience
  • Eva, lived experience
  • Stephanie, lived experience
  • Samira, lived experience
  • Estraven, lived experience
  • Jim Bunkleman, partner of (deceased) multiple. Founder of Healthy Multiplicity/Plurality cohort: wants to organise a gathering of Multiples from the online resources and blogging community. Most are not ‘out’ in any other setting and very difficult to contact.
  • An Infinite Mind aninfinitemind.com Peer based organisation behind the Healing Together Conference on DID. Also involved in a documentary about DID.
  • Noel Hunter: Lived experience activist, alternative mental health community, trauma community. Author of Whose treatment is this anyway? Helpful and harmful aspects in the treatment of dissociative identity disorder phenomena
  • Jade Miller: lived experience activist and skilled blogger, author of Dear Little Ones about care of child parts in a Multiple system.
  • California: (details private)
UK
  • Fiona, lived experience
  • Lisa, lived experience
  • Carolyn Spring, lived experience of DID, founder and director of PODS, Positive Outcomes for Dissociative Survivors, self funded charity offering training and resources.
  • Dr Rufus May, member of hearing voices network, works with people with Multiplicity and Voices as parts. Dissociation is real Article
  • Dr Eleanor Longden, formerly diagnosed with Schizophrenia, TED speaker, understands her voices as parts.
  • Rachel Waddington, hearing voices movement, alternative mental health, lived experience activist, speaker and trainer
  • First Person Plural, peer-based association
  • The Pottergate Centre, clinical treatment team for people with dissociation and DID
AUSTRALIA
  • Ruth, lived experience
  • Tyrone, lived experience
  • Melinda, lived experience
  • Kallena, lived experience
  • Suzanne, lived experience
  • Jenny, lived experience
  • Former members of face to face support group, Bridges
  • Daniel and Savannah: lived experience News clip
  • Prof Warwick Middleton MB BS, FRANZCP, MD Director of inpatient Trauma and Dissociation unit at Belmonte Private Hospital, Queensland. Also a member of Advisory Panel for Blue Knot Foundation (formerly Adult Survivors of Child Abuse)
  • Isst-d, International Society for the Study of Trauma and Dissociation
  • Ron Coleman and Karen Taylor, hearing voices movement, recovery house founders, work with some people who understand their voices as parts
  • Voices Vic – peer-based organisation with 2 face to face Multiplicity support groups facilitated by Sue lived experience activist.
  • Sue,lived experience (see above)
  • Dr Cathy Kezelman MBBS (Hons), lived experience activist, director and president of Blue Knot Foundation, director of Mental Health Coordinating Council
CANADA
  • Randy, lived experience

Wishlist of Contacts in Key Overlapping Communities

Many of those in the above wishlist have these experiences, which will be explored if they wish in conversation.

Yet to be created – members of these communities with no direct experience of multiplicity. This may not be needed, or may not take the form of interviews but instead a literature review or other form of consultation. To be determined following the first round of conversations with people with personal experience.

How will this Project Benefit Australians Affected by Complex Mental Illness? (what we will get from it)

Living as a group presents unique challenges and opportunities, and an unusual relationship with external groups such as in educational or workplace settings. Multiplicity can be the most painful, isolating, destructive force, but for others it is the salvation, a super power that overcomes adversity and harm and brings life and health. This extreme dichotomy may be true even of the same person at different times in their life. A better understanding of the relationships between illness, injury, disorder, and diversity will be helpful in a number of ways for Australians affects by complex mental illness.

Creating different frameworks for people to process their experiences

Exposure to a variety of more nuanced languages and frameworks to explore health will support people to examine the assumptions between the ‘mental illness’ clinical terminology, to be more free to use the words, terms, and understandings that best fit their own experiences, and to be more confident to explore the complex relationship between suffering and health in their own lives.

The use of art and beauty to express complex ideas

Visual art is a universal language, going beyond language barriers and also beyond that which is difficult to put into words. Art allows us to explore, express and communicate the intangible, unthinkable, and unbearable. Beauty gives us strength and courage to look at things we’ve found too painful or confusing to engage. Art is a powerful medium for communicating complex ideas and bringing the private and taboo into community.

The creation of community via an exhibition

The process of being involved in this research and exhibition in itself will draw together a diverse community of vastly different people with incredible wisdom, experience, and knowledge to share. Some are currently extremely isolated and almost all operate in ‘silos’, only interacting with other people who share their particular language, frameworks, and beliefs regarding multiplicity. This will be a significantly different experience allowing people to connect across intersecting lines of diversity in a respectful and safe way, allowing greater knowledge exchange, richer understanding of diversity, and ultimately a connection of the specific back to the human condition.

The introduction to the wider community of more complex and useful narratives around diversity, disorder, illness, and injury

Sharing the results of this research in community-accessible formats through art, talks, writing, and resources will allow the learnings to go beyond this smaller community and reach back out to everyone. These themes and questions have broad applicability in mental health, community services, human resources and beyond. These are important questions and narratives to share.

The reinforcement that severe mental illness can be understood and responded to in many different ways

Opening up the conversation about how we understand and respond to those individuals who are most suffering, disadvantaged and impaired and moving beyond the reductionist one size fits all treatment and cure models will restore dignity both to those who have often been treated as the embodiment of their disorders and to those who have tried to understand and offer support from outside. Finding shared humanity and diversity is valuable for all people.

How will the Results of this Project be Disseminated?

I will be creating a series of original artworks for exhibition and online display. I am a hybrid artist, that is, my artwork is informed by other disciplines such as the sciences. My arts practice is strongly informed by my reflections on what it is to be human.

I am a Social Practice Artist, which means I work collaboratively with communities, using social engagement as my primary medium to create artwork in various formats. The social interaction is a key component of the artwork. I link contributions from people together in the creation of my artworks. In this instance the interviews and events I attend will form the material from which the artworks are created, using key concepts, quotes, and stories (with permission).

With sensitive handling, Social Practice Art is an incredibly effective way of engaging hidden communities, complex issues, and taboo topics. It supports the voice of people who are often ignored, and increased visibility of the experiences and ideas of those affected without having to expose them directly.  I have successfully used this approach to create my artbook Mourning the Unborn, and exhibition Waiting for You, on the topic of miscarriage.

I am a skilled writer, poet, and accomplished blogger. I share on my personal blog at sarahkreece.com as well as guest posts for other organisations. I will write a series of personal responses for publication on the intersections of illness, injury, disorder and diversity with an aim to begin untangling these concepts and exploring the factors that are relevant to wellness.

I am also a speaker and trainer, I will create and deliver presentations about my learnings and the implications for individuals and services.

I will also use the learnings to guide the development of resources and language for the Dissociative Initiative, my international network, and to inform the structure of non-clinical peer based resources for other challenging experiences on the intersections of illness/injury/disorder/diversity.

What now?

You will be able to follow any developments through the DI newsletter. If you would like to be involved in this project, please contact me sarah@di.org.au or through Facebook. Suggested ways you can contribute:

  • Volunteer for a conversation (Let me know if you prefer to be kept off this public wishlist)
  • Invite me to conferences or other events relevant to this project
  • Offer to sponsor this project or part of this project (I can forward a budget to you)
  • Link me to other funding opportunities
  • Offer mentoring for the social research or social arts aspect of this project
  • Offer me resources such as a physical or online venue for presentations or exhibitions, or accommodation during travel
  • Volunteer time to be part of a working group managing this project – this will involve tasks such as making travel arrangements, proofing grant applications, booking venues, hanging artworks, responding to enquiries.