I’ve just arrived in beautiful Prague today. I’ll be presenting an online keynote and workshop at the International Hearing Voices Congress 2025 for Intervoice Day on the 9th Oct. You are welcome to attend that day online for free by contacting Kellie Stastny (Chair of Intervoice) at her email: kelnco87@gmail.com.
I haven’t been to a Hearing Voices Congress since 2013 when it was held in Melbourne. Back then I presented Introducing Multiplicity explaining the different ways people experience voice hearing, dissociation, and multiplicity/plurality, and a second talk about using the Hearing Voices peer based group model to support people with other experiences with my co-presenter Jenny who passed away recently. We used to facilitate the local hearing voices group Sound Minds together.
This time the conference is themed around the topic of supporting young people. I’ll be delivering a keynote called Gary: supporting young people with complicated minds, and then in the afternoon holding space in a workshop about finding hope when supporting people with ’embodied voices’ – all kinds of multiplicity and plurality.
I used to exclusively support adults in the community services sector, but NDIS has brought me into contact with many families, children, and young adults over the past 5 years, and as a parent of 5 kids, and someone who was themselves a ‘Complex’, ‘at risk’ kid, I’ve learned a lot. There’s always so much more to learn, but I also recognise that a child who hears voices or switches between different personalities is for most people so far outside of their comfort zone they don’t know where to start. I certainly don’t have all the answers but I do know where to start.
I was once that strange child who felt possessed. I’m still ‘possessed’ in that we’re still multiple/plural, we’ve grown up but we’re still a group. We are married and own a house and raise our children and run a business and employ a team of people. I have supported other people and families and witnessed from afar even more people finding good lives. It isn’t hopeless and it doesn’t have to stay scary.
So, I’ve created a collection of new ink paintings in purple and black ink and put them into a powerpoint, printed out a stack of Welcome Packs about multiplicity and dissociation, brought warmer trousers and packed melatonin and sensory items.
ID ink painting in dark purple of a downcast young adult with an arrow in their chest, pinning a card to them with the word Complex on it. Their dark hair tapers into fern like curls, which are also the pattern on their pants.
I’m so looking forward to meeting familiar faces again and getting to know some new people. This movement is precious and they sheltered me when everyone else rejected me. They saw capacity when everyone else was consumed by my limitations. They welcomed me to grow in the local group and then use it as the fertile soil in which to plant my own strange ideas and grow resources for others out there on the margins who were also excluded and alone. They’re messy and imperfect and certainly not a Utopia in any way, but their values are excellent and the observations and knowledge and hope they hold for people written off as crazy and doomed is unparalleled.
It’s a big deal to come here, it’s expensive and time consuming and it means a week without my family, with my beautiful wife holding the fort with the kids and the business. We talked about it for months, going back and forth about the value of it and the cost and the potential risks. During that time, we also had 4 funerals over 5 weeks, one of them Jenny’s. She was an unfailingly kind soul, who welcomed everyone and spent years spreading her story of acceptance and hope. I carry that story with me, alongside so many others.
Nightingale and I found ourselves asking what we will have wished we had done with them if we knew we only had a year or two left ourselves? Our children are our world and everything is wrapped around our family, as it should be in our circumstances. But my world pre and post covid looks vastly different and I am aware of the losses, the things I used to do and the voice I used to use. Movements struggle when people can’t show up for them. Nightingale and I keep coming back to this – finding safe and accessible ways to share this kind of information. Making the terrifying understandable, the unspeakable bearable. Facilitating conversations. Holding hope. Diversity like this has a suffocating weight and people – and children – around the world are drowning under it. They don’t need to be alone.
Empowering therapists and parents and partners and doctors to become comfortable with people like me, hearing stories of hope and meaningful lives, having a language for experiences so you can share them, and meeting others like yourself are powerful antidotes to isolation, darkness, and terror. So I’ve flown half way around the world to reconnect with a movement I believe in and add my small candle to all the lights people are holding out there in that darkness.
I don’t print chirpy stickers about diversity because I think it’s easy. Difference can be extraordinarily painful. I was very moved by this powerful article about Patrick Burleigh: I was a four year old trapped in a teenager’s body. It’s a man’s reflection on his childhood with a very rare hormone disorder that makes puberty start in infancy. While my life has been very different and my responses to the circumstances I was in about the opposite of his, there was still a lot of common ground.
He wrote about how other people responded once they learned about his disorder:
“Revulsion. Disbelief. Lurid fascination.“
That’s a familiar place. Not all multiples/plurals experience this but many of us do. I wrote about the toxic culture of fear, fascination, and disbelief around multiplicity back when the movie Split came out, in I’m multiple and I don’t kill people. He’s right about the revulsion aspect although I suspect he gets a much stronger response of that and I get more disbelief and fear. (There’s not a lot of serial killer movies about people with rare hormone disorders murdering folks, although there are many about people with physical or facial differences doing so)
A few years ago when Star was in the worst grip of her eating disorder, I was researching to help her and came across some interesting ideas about how and why we eat. Certain impulses are innate at various strengths at different times, and help to balance each other. For example; fear of a new food we haven’t seen someone else eat, disgust at foods we have previously felt sick after eating, suddenly feeling revulsion for favourite foods when we have eaten them too often in the context of a too limited diet, and so on. These are protective impulses that help us eat sufficient foods in sufficient variety to be healthy, and to reduce our chances of being harmed by spoiled or poisonous foods. Hormones can have a big impact on which impulses are strongest (as most folks who have been pregnant can tell you) and in disordered eating, poor nutrition can change hormone production in a nasty spiral where those deep, involuntary impulses that cue hunger or revulsion are causing horrible harm instead by making it incredibly difficult to eat.
Difference and disgust have a strange relationship, not just in food but in culture. When things are out of the norm they can trigger the same deep involuntary revulsion culturally that being served raw fish, offal, or eyeballs can to someone for whom this isn’t part of their normal diet. We’ve seen this with the knee jerk reaction to LGBTIQA+ people, with the added twist that some of the most intense negative responses are from those who are themselves queer and hiding – shame and disgust appear to have a relationship – the inward and outwards face of the same rejection and loathing.
One of things I find so pernicious about the serial killer trope is that it re-enforces this response. It gets up close and personal with difference in a way that encourages revulsion and fear – which are appropriate responses to a human predator – but attached instead to people who are simply different, themselves the victim of predators, or in terrible emotional distress. When plurals and victims of trauma and abuse suffer this social burden while the people who harm us often blend in to society incredibly well, there’s a bitter irony here. There is a brutal double impact of not only being traumatised but bearing the abuser’s social stigma and shame. This can do far more harm than the abuse itself, and dealing with it is one of the reasons that people who are deemed ‘lucky’ because they were only ‘almost harmed’ by rape, assault or family violence frequently struggle in very similar ways to those who were obviously and overtly harmed. They were still powerless and traumatised. They are still impacted and different. The harsh reality is that all too often, being different can expose you to much more social harm than being predatory.
Something I find of immense value about articles like this one, is the way it links the different experience back to the universal human experience. When you are first coming to grips with something difficult or different, it tends to be consuming. At first it utterly isolates, and it feels like you are the only person in the world dealing with it. Then, if you are fortunate, there’s powerful moments of connection and recognition, finding language for experiences and peers you hadn’t known about. That’s often the case whatever the difference is – chronic illness, neurodivergence, queer identity… And for a little while you dive deeply into the new world and consume it. It’s often a life saving discovery.
After a time for most of us it eases back a little or even a lot. It ceases to be front and center of our minds and our lives. And we start to discover different threads, common ground with other people. We find that other people too, have suffered and struggled in ways that are similar and different and parallel. These connections are just as important to make, they form our bridges with humanity across deep gulfs and gaps in experiences. They help us remember all the other aspects of our identity that tend to be overshadowed for a time. There’s a rebalancing process that can involve a shuffle with how we engage communities. Queer folk get tired of their activism. Sick people decide to spend their spoons on a hobby night rather than a support group. Other aspects of life calls.
For us, when we were 10 years into multiplicity advocacy we found we reached a place where we were over it. The fear and the fascination had long gone. We couldn’t find any enthusiasm to read another book or article with a slightly different take on the same stories and ideas. The difference stops being defining, becomes part of your experience of life but no longer the terrible secret, bewildering loss, or deep wound. And in that space we are no longer captive to it. We become – both to ourselves and our communities – human. Not curios or ambassadors or there-but-for-the-grace-of. Multifaceted, members of more than one community, imperfect. Just human.
We have needed time away from the world of plurality to focus on the biggest changes in our life: letting go of Rose, grieving Star, raising Poppy, falling in love with Nightingale, bringing Bear and Calliope into the world, caring for Nemo. Building my business to the point where I’m not dependent on welfare anymore. Buying a home together. So many huge things I’ve been adjusting to, soaking up, learning about. So many precious dreams I’ve chased.
Nightingale takes me out to dinner. We discuss our good luck, our privilege, ways we can give back. She raises the Multiplicity book again. How huge the need is still in this space, how vulnerable and alone and hidden so many people still are. We turn it over and over, how it might help, how to fit the research and writing and editing into our incredibly busy lives. A fire rekindles and we find ourselves unexpectedly ready to take up the torch again. This is not all of who I am, but it is part of who I am, how we live in this world. It is complicated and isolating and beautiful and I’m not ashamed of it or willing to be utterly defined by it.
I’m also autistic, and as I discuss inclusion in schools, workplace accommodations, and police training I’m often struck by the extreme lack of parity. Can you even imagine what it could look like if plurality was given the same platform, treated with the same sense of importance and validity?
We deserve a lot better. So much of the destruction people suffer has nothing to do with the experience of plurality and everything to do with the context in which we live and are not accepted. We are human and we deserve a seat at the table.
Find more of my work about plurality/multiplicity here.
This little snuggle bug is now 3 months old. After her rocky start she has settled into our family and is back to being a regular newborn. The temperature wobbles have disappeared and that frightening skin mottle is just a bad memory. She’s beautiful and healthy, eats well, gaining weight, and alert.
ID gorgeous smiling baby girl with light brown skin, bright brown eyes, and a little dark brown hair. She’s lying in a bassinet, wearing a Winnie the Pooh onesie.
Her siblings are besotted with her. Bear is 2 and loves her with a degree of unrestrained enthusiasm that requires attentive supervision! Poppy at 8 is old enough to carry her and even sometimes walk her to sleep. Nemo didn’t think they could fall as hard for any baby as they did for Bear and has discovered that joy of your heart expanding.
Calliope has discovered she can interrupt any activity and melt any heart simply by smiling. She has the most adorable dimple on one side. She loves to talk back and forth with her little burble and coo. When she’s interested in chatting she’ll lift her eyebrows in an expression of intense surprise. She is happy for a time in her bassinet but loves to be carried in a wrap, snuggled close to your chest. Sometimes if she’s sad and crying she’ll stop and listen if you sing to her. If she’s very upset, her favourite song to calm down is Aretha Franklin’s (You Make Me Feel Like A) Natural Woman.
I cannot believe how incredibly fortunate I’ve been. Back when I was 14 I realised that I deeply wanted children. So many obstacles came between me and that dream, the collapse of my marriage, my struggles with endometriosis and adenomyosis, coming out from a hostile religious background, chronic illnesses, poverty, unemployment. To be unpacking the carefully saved clothes for the fifth and last child, and this time putting them aside to pass onto someone else is simply astonishing. It’s a very busy, very tiring life but I’m absolutely in love with it. It’s a privilege beyond words to raise these children and I’m very aware how many people don’t get the chance.
We recently put a little money together to hire what Nightingale calls a Baby Whisperer. A lovely NICU nurse with a lot of additional training including in Newborn Behavioural Observation came and spent some time with Calliope. Nightingale and I have noticed that we don’t seem to be able to read her cues as well as we could with Bear – at this age we could pick a number of different pitch cries that indicated hunger or tiredness or discomfort with him, but with her we’re often unsure. The Baby Whisperer came and assessed her to see how she was after the illnesses and hospitalizations. We discussed how she had been showing signs of feeding and touch aversions from the trauma of her treatments. We’ve been gently rubbing cream into her hands during restful moments like when she’s feeding to help her recover from the stress of multiple painful gelcos being placed.
The outcome was really thrilling. She’s recovered incredibly well. She has strong cues, she’s robust, able to soothe herself when a little agitated, not showing any residual touch aversions and only a little feeding aversion. The glitch is more that we’ve been basically trained to be hyper sensitive to her health cues – we’re not very tuned into her different cries but we pick up on skin colour changes with incredible speed and sensitivity. So we’re missing some of her social and emotional cues as a result. In a nutshell, she’s not traumatised but we are a bit! So we’re working on that. Having her so sick, and the hospital response so fragmented and contradictory cemented that we need to be intensely vigilant monitoring her health and advocating for her. It takes a minute to stand that down and switch over to focusing on connection.
So here we are, 4 fabulous kids in the house growing up at a phenomenal rate. Chronically broken sleep. Date nights few and far between. The other day the older 2 kids happened to be out of the house for the night and we got very excited that we only had the younger two to care for and said brilliant! Date night! Cooked steak, lit a candle, and laughed at ourselves because we don’t know anyone who would consider caring for a toddler and a 2 month old a night off. It is gruelling hard work, and there’s times of overwhelm and misery. There’s also a beautiful bittersweet awareness that every milestone she reaches is the last time we’ll have that experience. Daft people who haven’t quite followed the complicated nature of conception in our queer family tell us we can’t be sure we’re done and we never know what might happen. (So much planning and baby math goes into conception for us) We are savouring everything, and so tired we’re forgetting half of it, falling over it in the dark, tag teaming, staggering along in the perpetual dampness of infant care. It’s absolutely beautiful and utterly consuming and I’m incredibly proud of how we’re living it and looking after each other.
She’s beautiful, she’s healthy, and she’s so well loved.
Home from the surreal terror of NICU and into the surreal mix of bliss and boredom that is life with a newborn. We’re exhausted and recovering as best we can. Baby is doing so well, getting stronger and feeding well. Little bear is bewildered by the new addition but very much enjoying exploring the new yard. The house still has many boxes stuffed into corners yet to be unpacked, the carport is a mess of dismantled shelves and tools and craft supplies. The front lawn has largely died while we were preoccupied with the baby, and is covered in pieces of jungle gym and swings yet to be reassembled, and things too heavy for me to move alone like a table with a circular saw.
I didn’t love this house at first. This was not our first choice, we were trying to renovate the damaged house Nightingale bought years ago. When that fell through we had a tiny window in which we could buy a place before baby came along. We applied for a house every week and there were others, prettier ones with creative layouts and ivy growing up the walls that I was in love with. This one was merely available, in the right area and with 4 bedrooms. When we were successful in buying it I was ecstatic and then I cried in disappointment.
I have waited a long time to own a home and I thought we would have time to explore many options and fall in love and it would be romantic. It was instead absolutely exhausting and under tremendous pressure. Sometimes one of us would run into the open inspection while the other lapped the block in the car trying to keep Bear sleeping through his nap, then tag out and swap. Some were insanely expensive, much more so than we’d expect. Some were frighteningly dilapidated. Many lacked basic things we need like a fence. It was an intense time with Nightingale extremely pregnant and unwell.
But we’re here now, in this funny white box of a house, set into a hill, and I’m falling in love with it. It’s peaceful. There’s birds and trees. I drag the sprinklers from tree to tree and patch of lawn to patch, starting to nurse it back to green. There’s a clothes line by the back door and I find peace in the simple domestic tasks after days of wearing the same soiled clothes in hospital. Bear moves dirt from one spot to another. I open a few more boxes every day, start to make patches of functioning space in the chaos.
It feels different to own it. I’m settling into the carport as a workshop space, and I’m not afraid of splashing paint or creating sawdust. There’s so much hard work that came before this and is yet to come but right now I’m in a tiny quiet eddy of time without a school run and work stripped back to the basics, not ready yet to face the world. Just cocooned here, getting to know the baby, the house, letting everyone get used to all the big changes. Eyeing up the empty spot in the freezer where I keep the spare meals, planning the fortnight shop, changing nappies, tidying away crafts, folding washing.
ID Sarah sits in front of a garden, with very short silvery hair, white skin, and blue eyes, smiling at the camera. I’m wearing a dark blue t-shirt. Cradled to my chest is a tiny baby with dark hair, sleeping in a froggy position and wearing a strawberry outfit.
Soon enough I’ll be the working parent again and my job will be to leave and focus elsewhere. Right now I resent that so much it’s hard to breathe, so I’m focused here. I’m cleaning Bear’s bottles and figuring out where to store the spices and learning where the new chemist keeps the latex free bandaids. I’m incredibly tried and I wouldn’t want to be anywhere else, doing anything else.
Sitting at the ASO Hans Zimmer concert with a friend, quietly crying to the theme song from Inception. It’s so beautiful. I remember the first time I watched that movie, thinking of my friend Leanne who had died, and feeling that she was so close by, just in the next room. That god was only a dream away, was just waking up. I wept then too.
Nightingale and I are expecting another baby. Our last little one, the fifth child in our little patchwork family. We’re halfway through the pregnancy, and while Nightingale has been brutally unwell, the baby is healthy. Much loved, much anticipated. My world, which was once so lonely, is now woven tightly with my family, my children, and my work. Solitude is rare, I am the gardener tending all the growing things, aching in the moonlight and resting when I can in the summer heat.
ID: black and white ultrasound image, profile of a baby’s face at 20 weeks old.
We’re back in the world of hospitals and white water rafting through medical trauma. I remember you being born, Bear; I remember cutting his cord. I remember how hungry I was to hold him, how my skin ached when he cried. The memories are like dreams, hazy and unclear. Underwater in a sea of trauma. I remember stuffing the scream back down inside me, my fingers twisting my fingers into knots, crying in therapy until I couldn’t breathe. Those memories are sharp and clear as glass.
I remember you too, Poppy, birthed into water in the dim light. I remember you falling asleep on my chest, night after night, pacing the driveway with you in a carrier, held close to my heart. I remember the frozen wordless terror left in my flesh.
It’s exhausting to have children at 40. And yet, my capacity is greater than it has been at any time since I was 18. This is my window, our last window, to bring these beloved children into the world. And while this baby is our last baby, it will not be the last. There will always be other children needing love, food, or a spare bed. There will be strays and grandchildren and friends of friends we take in and take on and love. We are lucky that way.
Holding the dream of the last child with so much love and anticipation. With worry about our housing, about more months of sleeplessness, about money and energy and weaving a new relationship into the family with each of the other kids. We are preparing more this time, building a team, asking the hard questions now, and making time to unpack the wounds. It’s a different kind of nesting to the first child. There are so many beautiful memories and so many dark ones. Tam and Luna float about us, light as moths, brief as butterflies.
We’ll do our best by you, littlest love. You have such a beautiful, imperfect, loving family waiting to welcome you. We have been so lucky in these dreams, and the moments blur together and become mundane and ordinary.
Then some artist fills the world with such beauty and sorrow and grandeur. And I remember the first time Bear gazed into my eyes when I was rocking him to sleep and how deeply moved I was. I remember Star resting her head on my shoulder in the hospital after her knee was torn. I remember getting ice cream with Nemo and debriefing a difficult appointment. I remember bathing Poppy in the backyard under the beautiful old tree. All these moments become framed in something that elevates them from the everyday. I sit in the dark theatre, weeping and grateful I have a heart that can still be moved. Grateful for these precious dreams and memories among the dark seas and storms. One day soon we’ll meet you too, little one. Hold on and keep holding on. We love you.
My humanity is as defined by my willingness to wash the clothes as it is by my poetry. It’s a strange thought. There’s so much love in sharing the load of life, it’s so unromantic and yet so profound. Nightingale jokes that I buy the flowers and she buys the underwear. I love giving thoughtful gifts and being romantic. I am terrible at managing many daily life tasks such as updating elderly underwear or getting letters out into the mail. Nightingale is quite the reverse. Many years ago I’ve been romanced, even seduced. There’s something odd, yet intensely loving about doing the life things together. Our relationship was born out of that, in a way. Both single parents, both essential workers, both needed during covid lockdowns. We shared the load and reeled in shock at getting home to find dinner cooked, dishes washed, or children in bed. Flowers and poetry are lovely of course, but so is a clean kitchen sink.
We are opposites in some ways, outsiders of very different cultures, complimentary and also bewildered by each other. I’m the mad creative intellectual from poverty-ridden Elizabeth who borrowed Hamlet from the lending library so often that they eventually just sold it to me. She’s the wild defiant muso from respectable and educated Blackwood wearing black lipstick to musical theatre and getting drunk at karaoke. Oh, Elizabeth stop being such a scruffy grot! She laughs at me. Oh Blackwood, stop being so snobby! I laugh at her. She’s city, I’m country. She’s international, I’ve barely left my state. She’s private, I’ve spent years being raw in public. We weave it together with our shared love of culture and arts and family and our deep respect for each other’s skills and capabilities.
This year she buys me chocolates for my birthday. I buy her mobility aids when her back goes out. It all goes around in a circle. I think to myself how fortunate I am to have someone who somehow doesn’t lose me, despite the whirlwind of tasks, housing issues, work stresses, sickness, children, projects, and worries. Someone who will drop everything for an hour together with me, will move the earth to get us a night away. However far apart, is facing me, reaching for me. Buys me flowers. Puts on a load of dishes. How much stranger love looks than I used to think it did. How lucky I am.
I have spent much of my life attempting to understand what it is to be human. In the dollhouse distasteful reductionist language of autism, it would be a special interest of mine. Informed as much by my limitations that made my peers perceive me as less than human as it is by the relentless intellectualism and embarrassingly vulnerable heart to which I’ve pursued the manner. All autistic traits, I’ve since learned, all human ones.
“When childhood dies, its corpses are called adults.” (Brian Aldiss)
Growing up is about both finding and compromising your identity. (Philip K Dick)
I have brought children into the anthropocene. Into an age where they will be unlikely to be able to earn enough to afford their own homes. I have passed on genetics that have loaded the die. Poppy has had two dental surgeries for the same undiagnosed mysterious salivary insufficiency that destroys my teeth. I love children with no genetic link to me who are nevertheless mine, as much as any child is anyone’s, with a thread just as binding and just as fragile.
I have spent years refining my understanding of myself and the world, and years dismantling those frameworks when I fell off the edge of the planet into the void. Years exploring the wilds at the edge of my solitary experience of the world, and years exploring the shared reality of the domestic day to day life. Always polarised, always missing pieces of myself. Finding so many lost souls. Losing knowledge and memory as much as picking up new precious information. Looping the same mistakes over and over while I struggle to understand. Finding my way out of each kind of darkness.
Today was international mud day. Poppy’s school celebrates it and I so wanted to be there. But Bear was sick and couldn’t be out in the cold weather. My heart broke. I thought I would parent differently. I thought I would be there for everything. I work. I have other children. Nightingale has been sick. I juggle and I work hard and I have to let things go. Today hurt to let go. In any group or family, there’s a carousel of who takes the lead, whose event is special, who is sick or hurting, whose turn is next. It’s imperfect and it’s especially hard when coming from a single parent single child background where the answer to that question was once incredibly simple: this one child of mine is the focus. Now there’s more to balance, more complexity, more networks, more regrets. I compromise. Poppy waits for next time.
I resent compromise and I fight it. I sat at a show recently and a young person berated us for leaving them such a broken world and I remembered berating my parent’s generation for that, but I still wanted to say it wasn’t me! I still wanted to take my children far away into the wilds and live off the grid and away from single use plastics and be pure and pristine and at peace in the knowledge we contributed to none of it.
And I think what that would do to my children, the friends and family they’d lose, the opportunities lost to them, the network I’m part of where we care for and contribute to our world. I remember my public health training and the despair of the researchers who found the obsession with individual consumer based environmentalism had consumed everyone with guilt and distracted us all from the giant corporations and their captive regulating bodies that were permitting vast environmental atrocities for profit. I remember that compromise can be holy. It took me so long to understand that. That we remain in the world. That we accept the blemish and the stain. That we participate imperfectly in the giving and receiving of love.
Today I drove for hours through fields and forests, through mist and rain and sun and smoke. I drove to the ocean which was foamy and wild. I played Little Bear’s favourite song with him, which is Row Row Row your boat, and discovered he likes green juice. We looked at two caravans that could function as home offices while our damaged home is being repaired and rebuilt. The world unfurled before us like a flag. People were kind. Bear stomped about in his sweet little brown leather shoes, chuckling at chickens and nesting his head in my shoulder when a dog frightened him.
It was a heartbreaking day. It was a good day. This morning I pulled the car over to cry as the pressure of all my tasks and that horrible underlying fear of letting your children down pulled me into a whirlwind of meltdown. This evening I lit a candle and lay in a hot bath by an open window watching the sky darken. I watched Wallander on my phone and cried at the beautiful music in the credits. I thought about how vibrantly the male characters were portrayed and how distant the females were, passive and beyond reach for us because they are beyond reach for Wallander, loved and pitied and mourned from behind glass. What’s wrong with me, she cries. There’s nothing wrong with you, he replies. He’s right. And yet. How then should she live? Is she still human? Does she still have a soul, or is she what her father has made her?
I thought of how lost we are as a culture about trauma and grief, how bewildered. An autistic might say we have no scripts. What is the etiquette after horror and betrayal? We are bound by conflicting instructions that cannot satisfy: we must move on as if it never happened/we must be broken forever to show it mattered and prove our pain is real. Silent/passive. I think about birth trauma and Bear and the gaping wounds I carry for how he and Poppy came into the world. How I am silent and passive, I have not told those birth stories, I have not painted that pain. Something in me was broken and remains broken. I do not care to bring my pain to the public to defend it against a medical structure founded on the certain knowledge my experience is invalid. There are no scripts. There is lying alone in a bath, weeping when Wallander is kind and hurt. There is the power of naming it, recognising this wounded black beast as my own, however uninvited and unwanted. The ghosts that came with my children.
Parenting is all about living with ghosts. “Monsters are real. Ghosts are real too. They live inside us, and sometimes they win.” (Stephen King)
This is what it is to be human. The complexity and contradictions and imperfections, the threads both found and lost. My friend who died in her sleep with her face cupped in her hand and whose story was far from over. Who fought so hard for her life and to feel alive and not be overtaken by the beige. Too soon and too young and unfinished and unready. This is our life. The violin weeping with me and the dog downstairs shrieking at a rat running along the fence. The unspeakable and the benign tangled.
I lost my art again. I’m careless, I lose it often. I’ve made no art at all in years. I’ve been hunting for it in therapy, pointing to the unspeakable stories I cannot paint, the blocks that make me afraid of my easel.
Yesterday I moved around the furniture to allow Poppy and Bear spaces in the studio with me, and I set up desk lamps and task lights and turned off, for the first time in 2 years, the overhead fluorescent lights. A chainsaw growl in my brain went instantly away and the space that has been terrifying became warm and safe. I forgot how much the environment mattered, how, like many autistics, I can hear and feel electricity, and florescent lights burn my brain. All the complicated nuanced poetry of my creative blocks fell to one side in the simplicity of shadows and lamps inviting me home. So frustratingly simple. I did not need to speak the unspeakable, I just needed to feel safe in a place where that might one day happen, now.
I stood on the beach today with Bear asleep in the car and the wind wild around me and a gift for grief and loss hidden in my bag and poetry came to me like the sound of her voice in the wind. We are human. We break, and we endure, we tell stories and keep secrets and we are gone far too soon.
We have a beautiful healthy little boy, born on Friday by c-section. It’s been a very long, disruptive process of inductions and hospital visits and stays. He’s not yet been named. He’s very beautiful with a full head of dark hair. He makes all the lovely newborn snuffles and snorking sounds. He feels like velvet. Nightingale was able to do skin to skin immediately after birth in the theatre and through recovery. He’s in newborn sleep mode which means loads of naps during the day and cluster feeding and squeaking all night.
ID light brown newborn wearing a blue singlet, snuggled up on a cream blanket. He has short dark brown hair and looks content. ID black and white portrait of a baby wrapped in the striped hospital blanket and lying on his tummy. He’s looking very serious with big dark eyes.
Nightingale sailed through day 1 post surgery then started collecting a horrible bunch of post op complications. We’ve been stuck in hospital much longer than hoped because of them. She’s been through hell the past few weeks with so many painful procedures and things not working. I’ve held her hand through most of them and we’ve worked hard to protect ourselves from the stupidity and vagaries of the health system. We’ve succeeded far better than I expected in many ways, but far less than I’d hoped. There’s a lot of bad stories and a lot of pain and trauma. Most of the staff have been fabulous, and a few really saved the day by talking us properly through options, or listening to concerns which they thought were unlikely but turned out to be accurate, or protecting our wishes when someone else tried to take over. A few have been so bad we banned them from contact again. It’s so different to Poppy’s birth and yet so familiar. Miraculous and beautiful and awful and dark. We are grateful and relieved and overjoyed and exhausted and hurting and can’t put many of the experiences into words.
Pain is an ongoing challenge, Nightingale has been suffering from pain crises where she is in 10/10 pain, sometimes for many hours and the pain relief doesn’t work. A few nights back she was unable to move or speak for 6 hours while the staff maxed out all the pain relief options without effect. She should still be in hospital but we negotiated fiercely for home. I can nurse her with all the same resources they have the (except of course, someone to take over at shift change), and the stresses of the long stay in hospital have been building each day. The awful food, the hundreds of people who come into the room day and night, the Covid limitations on visitors so we can’t have both our kids visit, the lack of proper titration of pain medication, the way the plans change at every doctor shift change, notes going missing, stretched staff taking 45 minutes to respond to a call bell, the new person not reading the notes and harassing Nightingale for needing pain relief or blaming her for not getting out of bed every day because someone forgot to chart that she has, the ones who don’t understand consent or are confused by anything that’s not 101 typical presentation and keep giving bad advice, the ones who block agency and access to even the basic resources like an ice pack, the constantly having to explain, provide context, build rapport, and ally with every new staff member, the gratitude for things that should be a given, the sheer helplessness of being stuck inside a system with so little power. The costs accrue alongside all the good care and helpful folks. So we’ve finally come home late last night with a long list of medications and things to deal with and some home visits and outpatient appointments.
Everyone has been homesick and missing each other. Our community of family and friends have been looking after Poppy and Nemo. We’ve managed two hospital visit with them both, Nemo is anxious about accidentally dropping the baby, while Poppy is nearly exploding with excitement. We feel stretched at the seams. We’re trying hard to look after all of us.
ID Sarah holding baby. Fair skinned adult with green hair cradling a baby who is wearing a black onesie covered in bright coloured stars.
He’s beautiful. It’s incredibly strange to have a baby I didn’t birth. It feels a little like cheating at times, there’s so little effort on my part to bring him here, while Nightingale’s body has been a war zone. I feel oddly guilty.
I also feel slightly out of the loop. The hospital don’t see partners. They see a mother baby dyad. I’ve been absolutely invisible for most of the process. The same rules apply to me as any other visitor. All the paperwork says Baby of Nightingale. I have to find and store my own meals. I’m often not allowed to use the bathroom in our room but required to go elsewhere. There was a moment in theatre when they needed to take him off Nightingale’s chest and weren’t sure if they should put him in the warmer. I offered to hold him skin to skin myself and they were so startled and flustered and turned me down. The doctor asked Nightingale about her mental health as part of discharge, I’d spent most of the day crying but didn’t flag. We’ve done a fabulous job of protecting the connection between Nightingale and bubs, I’m not quite there yet.
I feel fiercely protective of both of them, and deeply relieved he’s okay, but also jolted by a hundred small experiences that tell me he’s not my son, like micro aggressions that have stacked on top of each other over weeks. I can feel the difference and I can feel the trauma jangling in my bones, the way I’m frustrated with him when the staff are doing something horribly painful to Nightingale and I’m trying to hold her hand and hold him too and he’s screaming and I can’t comfort him so I can’t comfort her. I hoped it might be better than this, we got our golden hour and protected our family as best we could. But here it is. We got the perfect outcome with him. We got a difficult outcome for Nightingale and I. We’ll keep repairing the damage. We’ve got time to grow all the good things. There’s a lot of love here.
Everything in our lives for the past year has been moving towards this point, like a staircase spiralling up a tower. We are in the last days now, waiting. Our kids are enjoying visits to friends and family, while we swing between home and hospital for daily checks. We’ve had a bumpy ride with hospital, some wonderful staff and some hostile and probably traumatised ones. We’ve worked hard to build relationships, normalise seeking consent, and collaborate on the approach.
Nightingale has had a bit of a rough pregnancy, very high hormone levels causing severe morning sickness and some difficulties with low blood pressure and gestational diabetes. As a result we’ve been put on the high supervision pathway, with frequent growth scans, twice weekly diabetes check-ins, and so many hospital appts that some weeks it’s felt like we live there. Every time we attend there’s a different doctor or midwife, and often different contradictory information and advice. It can be very stressful.
Now we’re approaching the due date with pre labour contractions making every day a possible birth day. It’s exciting and tiring. There’s a steady stream of enquiries from folks wondering if bubs has arrived and we somehow forgot to let people know. It’s impossible to make plans, and anytime we can we’re just catching up on sleep.
We went into hospital recently for a catheter induction which was very painful and unfortunately not effective. Nightingale has previously had a c-section so some options they might usually consider at this point are too risky. There’s no signs of distress for bubs or Nightingale so we’re just waiting at this stage. After meeting with the delightful head of the department we have collaborated on a plan to try again next week, and in the meantime go into hospital for a checkup every day. Being able to go home to proper food and good beds has been deeply appreciated and helps a lot with the fatigue. Now there’s a clear plan it’s been a much smoother process instead of each shift change exposing us to a new person’s ideas and values. We’ve denied contact from a couple of staff who’ve been aggressive and controlling, protecting our space and the precious sense of safety and trust needed to labour and bring a child home.
It’s incredibly hard making decisions and trying to weigh up different risks and approaches, often with very little quality evidence to go on. I don’t envy the doctors who have to try and do this for many people every day. Tailoring individual care on the basis of conflicting research, poor quality information, or massive cohort studies full of unmanageable variables is very challenging. Each protocol and policy has unintended consequences and theories and ideas that seem so intuitive, so obviously helpful turn out to be full of incorrect assumptions and focusing on the wrong indicators. There’s so much we don’t know and so much knowledge we lose.
We ride a roller coaster together, and our community along with us. There’s times of deep peace and connection, such hope and joy. We’re ready for them, everything is ready. There’s times of fear and sadness, afraid of loss and regret. We tumble up and down together, riding the waves and watching the stars. Come home littlest love. We’re waiting for you.
Nightingale and I married in July, on a winter night in a forest beneath a beautiful old tree. It was magic. It was messy. It was beautiful, and imperfect in many ways both trivial and significant. It was us.
ID: A forest at night. In the foreground is a cluster of wooden chairs of various designs, arranged in rows facing a huge white dead tree. Pink, blue and yellow lights are cast upon the trunk, making it glow. Bottles of fairy lights are on tree stumps on either side.
We started many months before, with rings. It was a delicious way to spend precious date time together. Nightingale wears a simple sweet sapphire ring I brought myself years ago, and she took Poppy shopping to help pick out a lovely trio of rings for us to choose between or wear together. We tried on rings together, talked with jewellers, and fell in love with parti sapphires. It took us months to pick out the stones, taking them back and forth between sunlight and lamps to see them change hue. Design and manufacture was beset with troubles and they’re still not finished, so we married with our stand in rings. We planned a lovely hand fasting and brought beautiful silk ribbons for it, which we forgot to bring into the forest with us. There was a delightful frazzled moment mid ceremony where we each started to stumble across these facts and Nightingale smuggled our rings off and gave them to our wonderful minister just in time for us to give them back to each other.
Nightingale has a wonderful friend who is a minister living overseas. We wanted them for our celebrant but they can’t legally marry someone in this country. So we found someone local who was happy to team up with them. Then Covid and vaccination rules meant some very important people couldn’t attend the wedding with our celebrant. So we split the day into a tiny legal ceremony with the local celebrant and a big ‘renewal of vows’ in the evening with our friends and family and minister friend. This meant two ceremonies to plan, and a lovely restaurant lunch between intended to thank our hard working friends and family, that instead ran terribly overtime and took up most of the prep time for the evening.
A couple of weeks before the wedding we had to change venues for the reception due to issues hiring generators and accessible toilets for use in the forest. So our simple outdoor ceremony then ran across two ceremonies and three venues!
Vases accidentally got taken to the forest instead of the hall, leaving hundreds of flowers in buckets in a back room. People who planned to help set up with us were sick on the day and I woke up to a huge asthma attack after packing all the things the day before in the cold air. The flowers for the cake were wrong and had to be completely redone by the cake decorator that morning. It was complicated to say the least and various dear friends sprang into service and filled in some huge gaps to ensure things were set up and people were comfortable, fed, and enjoyed themselves.
In the end Covid or similar illnesses knocked a number of key people out on the day, guests, members of the wedding crew, our videographer, and most crucially darling Poppy who is still sad they missed out. Once our rings are finally done we plan to do a little ceremony again together to include them.
ID Large red cap mushroom with white dots nested in pine needles on a forest floor. Trees are visible in the background.
Our lovely people carried us through. The lights on the trees in the forest were incredibly beautiful and finally all our confused guests understood what we meant by the theme of WOMADELAIDE. Stunning red and white spotted mushrooms sprang up all through the forest that day. The day was perfect weather, cool but clear, and the hall we found was so well appointed, warm and comfortable with the most lovely person staffing it. Our dessert table was a rainbow of lollies as a nod to our lovely queer crew of teen guests who worked as kitchen hands for the night and gave us some of the most beautiful wedding cards.
ID: A trestle table set with bowls and jars or lollies and treats arranged on approximately a rainbow from red to purple. Two large rainbow umbrellas are open over the table. Visible are red jaffas, pink musk sticks, yellow bananas, yellow fantails, green spearmint leaves, and purple pastilles.
Clothes were lovely and difficult and complicated. As a non binary person there’s not a lot of weddings I see myself in. Nightingale thought she wanted a black dress but hated them when she tried them on. Thought she wanted pants but found herself twirling in the beautiful white dresses feeling oddly at home. We tried on so many clothes. I held space for her to experiment and find what she really wanted. She held space for us to be confused and excited and anxious and try on femme and masc clothes and try to figure out who of us was going to be present and how to present us. In the end we both wore beautiful jackets, white shirts and black jeans to the first ceremony, she wore a red sari to lunch, and we both wore amazing dresses to the evening. She spent several months having to convince her nearest and dearest that this was her choice and not being fostered on to her by someone obnoxious or tradition. Hers was a stunning white halterneck with clean flowing lines that fit over her baby bump, and had pockets! Mine nearly didn’t arrive in time, a guest kindly brought it in their luggage from the overseas seamstress. It was a lovely ivory and honey tulle skirt with a corset top. Nightingale wore fairy lights in her amazing braided hair, and they were sewn all through the lining of my skirt.
Everytime we talked to the celebrant or minister, I cried. It hurt. There are important people in my life who wouldn’t be there. I have been married before and I promised then to hold on until death parted us and I took that promise so seriously it nearly destroyed me. I’ve failed before, profoundly, when it meant everything to me and I still don’t in my heart understand why I couldn’t keep what I loved alive. How do I offer such imperfect love to someone I love so deeply? How do I believe in promises again? I couldn’t find the right words and they had to be right. There was so much sickness and loss and grief to row our little boat through and I felt so excited and so guilty and sad. And there were people there to hold us and guide us. We stumbled through the fears and grief to find what we do believe in, and what dream is so important to us we’re willing to put life as we know it at risk for. Knowing love hurts and breaks as well as heals and grows. Being hurt and broken and holding on to each other and the shared life we’re growing.
Friends helped me gather the flowers myself when we suddenly had an indoor venue that we wanted to decorate to feel special. I got the fabulous experience of being able to pick them out and plan the table flowers, cake flowers, and bouquets. I chose a range of flowers from the most important bouquets Nightingale and I have brought for each other since we first became friends. There were black lilies and white and green and blue chrysanthemums and white and blue delphiniums and tiny cream roses and andromeda and asiatic lillies and jonquils. Her bouquet was accented with green and mine with blue. It was spectacular and lovely and delightful. The tables were also decorated with willow branches and tiny red mushrooms, potted plants, blue books, and fairy lights in gin bottles.
ID: Table decorations. A potted black violet in bloom worth a decorative red and white spotted mushroom. To the left is a gin bottle with blue fairy lights inside. To the right are booked wrapped in brown paper. In front is a chocolate cupcake in silver foil, with a swirl of teal icing and two silver chocolate bird skulls on top.
The cake was a splendid teal buttercream chocolate cake with fresh black and blue and white flowers and silver bird skull memento mori. The guests had cupcakes in silver foil. For gifts we wrapped ‘blind date’ books by some of our favourite authors, the potted plants, lolly bags for the kids, and boxed macarons. So many of the people we love either garden, read, or enjoy a sweet treat.
ID: A three tier wedding cake surrounded by cupcakes. The cakes have teal icing, silver bird skulls, and edible flowers and butterflies. The main cake has a spray of black lilies and other flowers flowing down the right hand side. Black chocolate drips from each layer.
Our backup videographer was lovely. Friends stayed late and helped us clean up. They wrapped our last gifts and decorated tables and unpacked chairs and kept an eye on my asthma and kept an eye out for the few guests who knew almost no one else. Our makeup artist soothed many difficulties and helped us dress. Two dear friends missed the ceremonies because they set up the hall and spent the evening cooking for us! An interstate friend wound up mostly driving hired furniture and lights around instead of us. We woke the next morning incredibly ill with what turned out to be influenza. It was a brutal one and none of us left bed for a week. We didn’t get a honeymoon or to spend any time with our lovely long distance visitors. We still haven’t picked up all the wedding bits from the kindly folks who took home bits and bobs with them so we didn’t have to.
ID: Hand holding a cupcake with two bird skulls.
And it was perfect. No one fought, no one cried, we created name and pronoun badges for all the guests to make life more comfortable for all the gender queer folks to wear whatever we wanted to. The venues were beautiful, our guests delightful. People restrained themselves from giving us physical gifts as we currently have no home to put them in. We announced our pregnancy to much celebration. There was hot homemade soup and a stocked bar and a tremendous amount of kindness. We wrote emails about accessibility and tried to consider sensory needs, small children, chronic illness, mobility, safety, and comfort. We tried to ensure every guest knew at least one other guest. We brought beautiful shoes we didn’t wear and ordered lovely food we didn’t eat and stayed in a home nearby with an extra bed for tired guests we didn’t use and none of that mattered.
Nightingale was so beautiful and full of life. So lovely and nervous and kind. Putting the wedding together had been lovely and stressful and incredibly time pressured with so much else going on in our lives. I was afraid that on the day there would be tensions, sadness, fights, strain. But all the fears and tears and pinch and ache of the planning and stress just eased that day. We rolled with every change and gratefully accepted so much help and enjoyed all our guests and just let go of everything we couldn’t control.
Our vows were lovely. Our choices for everything were so considered and so specific to us. Our people carried us through bad luck, poor planning, and difficult timing with such generosity and grace. We made promises and vows we believed in. We exchanged rings. We held each other at the end of the longest day and felt exhausted and grateful. She said yes. She is my wife. I am her spouse. May we always be as lucky and as loved as we were that day. It was splendid, and she was spectacular.
I’ve come home from the dentist today feeling shattered. I’ve struggled with medical appointments since Poppy’s birth. I was not treated well during surgery and that left me furious and frozen in medical settings. I’m very overdue for dental care and have started the grueling process of attending appointments for 11 new fillings. It was miserable today, my saliva thickened and I gagged a lot with my neck extended to allow access to the inside of my top front teeth. It took nearly 2 hours and other teeth are still irritated and sensitive from the previous session.
I’ve never been able to write Poppy’s birth story. Now so many of the details are hazy. I’ve struggled to understand the impact on me and the contradictions in the experience. I’ve felt deeply unreasonably humiliated by my struggles. I know trauma, it’s one of my major areas. I had PTSD at 14. I’ve read the things and been to the therapy and run the workshops and supported others. Somehow instead of creating grace for myself, my experience drowned me in shame. I should be immune? I should be able to deal with this? I shouldn’t feel the way I do. I trekked through a number of birth trauma specialists I didn’t find helpful, froze and forced myself through dentists and pelvic exams hoping I would just adapt. Then turned away from the whole mess.
Lately going to prenatal appointments I’ve run into all these ghosts. Going for a scan and finding myself in the room where they confirmed Tam had died. There’s ghosts of me throughout the hospital, screaming soundlessly and running with dark hair matted and white gown flailing. A portrait of derangement and madness. I sit in appointments, incoherent with rage and painfully aware that I present as rude, distrustful, obnoxious. All my energy goes into not screaming, stuffing all the words back into my mouth, not shaking, not biting the hand that touches without permission, not raving at the language that is so devoid of the concept of consent. There’s nothing left for the smiling and eye contact and apologetic shrug and recruiting them to accommodate us in any tiny way. I’m so tired until I’m sitting there, then I’m so angry and so aware my anger instantly strips me of any credibility or power I might have had in this place. They think of trauma as the panic attack, the victim. I am on fire with fury, watching their every move and listening to every word and seeing ghosts of myself weeping and running through every corridor, abandoned and untended.
So we’ve put aside some money to spend on a good dentist, and today on catching an uber home again because I’m usually too ill to drive afterwards and couldn’t find a lift. She uses the anaesthetic that doesn’t work as well but I’m less allergic to. And she says things like “you’re in control, let me know anytime you need a break”. I lay very still and my tears roll down my temples into my hair.
I come home and Nightingale brings me mashed potato and pasta and sympathy. I’m going to hurt for weeks and it’s exhausting.
I’m talking to people about birth trauma and how stuck and silent and alone I’ve felt. I know better. I know shame isolates. I know hundreds and thousands of other people will have come through something similar. I know how to use art, writing, talking, and research to process things. I know that knowledge doesn’t protect you from experience. I know it’s not punishment. I know self compassion is crucial. And I know it’s difficult to do when no one in the medical environment sees the injury, or responds with compassion. It’s difficult when it makes you feel weak and vulnerable. It takes patience. And a dentist who’s had good trauma informed care training. I wanted to be doing that training by now. Frustration and roads untraveled.
I feel voiceless a great deal of the time about most of my life, in a way I can’t express well or articulate even to myself. There’s been so many changes and challenges to my ideas about my life, my relationships, who I am, what it means and what to expect. Trying to understand late in life diagnoses of autism and ADHD, what they are, what that means for me, my family, my children. The ending of an eight year relationship with the parent of my child. Beloved Star cut contact with all of us last year after joining a church. Getting married, a new baby. Work stabilising and becoming less overwhelming. The awareness in the back of my mind that I’ve been diagnosed with something that indicates I lack social awareness and the resulting severe loss of confidence to speak and own my own story. Lost about how to be authentic and work, navigate complex relationships, parent. I miss having a voice and a community. I put a call out yesterday for help to attend the dentist and got no reply. Covid has not been kind. There are empty gaps in my world and they hurt. There’s so many ghosts.
I have birth trauma. I’m trying to find my voice again. I’m trying to make sense of which stories I can share and how. Today I was brave. I’m hurting. I’m not alone. We’re all alone. It is what it is. I’d rather take the slower and more dignified route to knowledge, through study. But lived experience brings not just the silence and scars, when we wrestle with it, it comes with powerful inside knowledge. When we can speak we break the shame that binds us all. I didn’t think it would happen to me, but it did. I didn’t think I would get stuck, but I did. I couldn’t fix this one myself. But someone like me must have found a way to speak to a dentist and because of them I could get broken teeth fixed today. And tomorrow I’ll pay that forwards.
Drums in my head, beating against the thick wall of my skull. We’ve lost the pregnancy.
Waking Nightingale’s teen to tell them, sorry Squid, we’ve lost the baby. Where? they ask, sleep blurred and confused.
Walking into my studio for the first time in months to wrap my book ‘Mourning the Unborn’ for a customer overseas. Then weeping in bed instead of taking the package to the post office. What strange timing, I’ve not sold a copy in over a year.
We find someone safe for Poppy to play with. I buy a bouquet and we bring it back to bed. It is bright and colourful and has the painful cheer of hospital flowers next to the white sheets. We spend the first day alone and entwined, breathing in the loss.
And then, nothing. I try to get through the days.
I’ve lost my voice, my loves, for a long time now. The unbinding of my family, my terrible depression, the building of something new… I’ve been so silent throughout most of it. I rarely share online or even journal privately. I take few photos, write fewer poems. There’s been no art in my world at all in years.
All my life has felt unsharable. The stories have been beyond my ability to put into words. I don’t understand them. They defy telling. I cannot speak because I do not understand. I cannot explain.
My life has been tangled into other people’s lives. I fear hurting others. I cannot share my own experience now without impacting those who share or once shared my life. I never want my words to be a trap or a weapon. I don’t have the strength to manage what might come in with the tide. So I’m silent. Cut off and waiting for I don’t know what. Unsure if this is only for a time or this is just how I am now.
Nightingale is savaged by grief, while I am numb. There was no body in my body, there’s no blood on my thighs, no community to grieve with. I tell friends we lost the baby, who tell me to send their love to Nightingale. The child that was also mine, becomes in death not mine. The miscarriage becomes hers alone. I’m behind the glass, handing out hot water bottles, dedicated and soothing and far more afraid of the impact on her and I, of losing us than I am of the loss we’ve just suffered.
Behind the glass it’s almost like nothing happened, there was no child, no dream broken. The child was not mine. I remember well the black void of trying to conceive Poppy after losing Tam, and I grasp at the relief like a lifejacket. There’s no void here. There’s nothing to grieve. I’m not falling off the face of the planet. I’m a good parent, an attentive partner. I’m functioning.
I don’t talk about it, write about it, cry about it. I don’t want a body to hold or a talisman or a tattoo. I want to hold Poppy and never let go. I want to run from the burning pit where my grief is not clean and pure thwarted yearning, but something ugly and sharp, pierced through with raging fear and doubt. Maybe the baby didn’t come because I’m not a good enough parent. Maybe they’re better off without me. Fertility as the blessing of the divine, the endorsement of the universe of your capacity. All such bullshit and yet my heart labors under the fears.
I can’t help but turn my face from the anguish of possible later loss, stillbirth, a child dead at 4 months or 2 years. The demand that I can handle whatever tragedy might come and still be here for Poppy. It makes me terrified of my dreams because I know tragedy will come, that grief follows love like a shadow. When getting out of bed each day is a torture of pain and mental exhaustion and humiliating incapacity, I can’t afford to risk much more. So, the horrifying traitor thought: maybe it’s better this way.
This is how mothers say goodbye, little Luna. Face turned to the side in rejection of all that you were and represented. Eyes fixed firmly on the child remaining, heart broken by doubts and unworthiness. Numb to the bone.
The brutal mornings become unmoored from the source of the pain. I drive Poppy to school and then collapse sobbing in the car and can’t drive home for hours. Nothing means anything. My heart runs from you. If you weren’t real, there’s nothing to grieve. I build no shrine and hold no memory tight of who you could have been and the life we dreamed of together. You were almost never here, real as smoke or mist, dew gone in the first light of sun. I betray you.
Nightingale is alone and not alone in grief. The primal need of grief is to know it’s shared. I add to her anguish. In the night we are raw and wounded. I turn my face back to the loss, and reach for a key. We watch Losing Layla and I find you there Luna, in the face of the dead child. Grief, pierced through with doubt and shame. I howl in her arms. My functioning evaporates like dew.
We go wander the WOMAD festival, under the trees and the flags, arm in arm. The night is soothing. We get a henna tattoo each for the child, a Luna moth and a moon.
ID: A brown skinned hand with a moon henna design, next to a white skinned hand with a Luna moth henna design.
I buy and finally read Terry Pratchett’s final book, The Shepherd’s Crown. The mere thought of it has been unbearable for years. Now I read it through and I cannot feel anything. My eyes are dry.
I miss all my children, the ones who could not stay, or who left. Everything tangles into darkness. I am dumbstruck, spellbound, silent, paralyzed. I cannot be who I wish to be, who I am. I cannot find comfort in your name. I thought losing Luna would feel like losing Tam, but it turns out each loss is distinct and each grief is its own thing. Everything hurts, and I cannot feel anything at all.
This is what it is. I was once so blasted by sorrow that I couldn’t feel even the wind on my face or hear the trains in the night. My whole world was ash, and I was buried deep beneath it. I’ve come back from the dead before. My littlest love, you’ve pulled me into the underworld beside you. I’ll find a way to kiss your bitter mouth goodbye and live again.
Quietly and secretly, Nightingale and her son crafted a beautiful proposal. In a dim room in the city, above the scrape and bell of the tram line and the river rush of traffic I found her waiting for me one evening with a table laden with gifts. She had been collecting mementos of us; sheet music from our songs, text from the books I’ve been reading her to sleep with, lyrics and poems and quotes we’ve shared. She printed them onto my favourite colours, finding the codes for teal and not aqua with the same fumbling determined uncertainty I have in her world of music and song where I think I can almost hear the distinctions she points out. These papers were folded into 5 petal origami flowers, one for each day we’ve been dating.
ID a coffee table with a white table cloth, covered in multicoloured paper flowers and candles, in front of a huge window through which there’s a view of the city lights and a gibbous moon rising.
She disguised it as a work project, folding in lunch breaks, hidden in her lap on the bathroom floor while I had a hot bath to ease pain, in the hours I was asleep or working. They are double sided with paired matched mementos, the music and art of our love.
ID close up of origami flowers, candles and gin.
Nested into this paper bouquet were fairy lights, candles, rose petals, our favourite chocolates and gin, and the set of rings she brought us. Three stacking rings as placeholders for the engagement ring yet to be designed. Three slightly different rings so we can each choose which to wear and change them as we wish. To have our plurality and non binary identity given such care and room to breathe is such a joy and relief.
In the centre of the table was a love letter tied with black ribbon. I sat and read the flowers, opened the chocolates, smelled the candles, breathing it all in while the moon slowly rose outside the window. There’s tears and joy and peace. In the letter she talked of our love and what I mean to her, and she asked me to marry her. Words can be hard, voice is harder still.
I say yes and kiss her face and hands and then write yes on paper and nest it into the flowers beside her letter. At 3am when the magic will seem strangely distant and maybe a dream, it remains there – her question and my answer. A beautiful anchor in such strange seas.
ID a person kneeling before a table of rainbow paper flowers, reading everything with great care.
I’ve spent years learning how to let go of what I cannot have, how to release my desire for control over what cannot be controlled, and how to let go of dreams that have broken my heart. Suddenly she is there, so incredibly real and beautiful, moving towards me, kisses on my mouth and a thousand arrows in my heart and my life is no longer about letting go or accepting the fates but grasping hold with fierce anguished joy. It rains in my nights again, and when there’s no rain there’s tears like rain, talking through the nights, hearts on fire. The children sleeping and stirring and singing and hurting and needing and loving and somehow embracing us both despite all the stories and norms of fractious step families. The things we expect to be hard are easy, and where there’s sorrow and loss we can name it and give it a place to be. The stakes are impossibly high and at the same time they’ve never been more within reach. We hold each other and weave together this dream of our future, unpicking and reweaving and getting tangled and easing them out again with patience and courage. She’s magnificent. Love is always a wild thing, untameable, a leap, a gamble. And yet, I feel so grounded, roots deep down and my voice unbound. She’s beautiful and wounded and fierce and devoted and I adore her. The family we make together is utterly worth the risk.
ID two hands over lapping, each with place holder rings. Mine is the white skin and all three rings stacked. Nightingale has 3 small sapphires on her placeholder ring, her hand is slender with brown skin.
When we first started dating we feared losing our friendship. Now I think of my life without her and that’s a cold wind, an empty chill. Life is painfully short, impossibly long. We wrap ourselves around each other and hold on. Some nights it rains. Some nights she sings. I’m writing again. Life is hard and bountiful. The garden is well tended and yields fruit. In the winter, we plan to get married.
After late nights talking, I wake early and creep away from sleeping child into a bath. Reread a journal from 2018 and find this poem about Poppy.
Connection
Late spring evening She's in the bath, giggling The wind outside is restless The air velvet and warm As the time passes Something eases like sand flowing Through an hourglass The noise goes quieter And quieter still The noise goes Into the silence We are still We look at each other Really alone and Really looking And we laugh.
Rose is in a terrible place, rarely far from death. They’ve been hospitalised many times since their near death experience in December. There was such a sense of celebration when they came out of hospital and it was so misplaced. Physical and mental health have cycled through chronic crises. It’s brutal.
Rose and I are no longer a couple.
They didn’t come home to me. Nearly dying blew wide every crack in our relationship. Every effort we both made to find a bridge between us was swamped. They proposed and ran from me. All the demons woke up. The only glimpses of peace to be found were when I took myself out of the picture and left Rose and Poppy together on a beautiful autumn day. I hoped patience would heal us but the longer I held on, the further down Rose fell.
So I let go and life took us to some un dreamed of place where the foundations broke beyond repair and for months I woke to the nightmare that they’re gone. The new normal.
Rose found love with someone else, found peace and a sense of safety that couldn’t be found with me anymore. I am so happy for them. I so want them to be okay, to feel safe, to feel loved. I am so confused and heartbroken. They are so confused and heartbroken. Nothing makes sense. We try to make time to talk but every day is torn apart by medical appointments, new infections, new allergies, medication changes, intense rehab, the fallout of trauma. No conversation is finished, few are even started. I think of the weeks spent rubbing their hands and feet and wonder if in some strange way I smell like the hospital, like death and terror and paralysis, drowning slowly in the shrill beeping hell of ICU. There’s no words for this. Their mind is fractured and ravaged. I’m replaced. I hate them. I love them. I accept what I cannot change.
I cry every day for months. Everyone wants someone to blame. I find myself defending everyone. Poppy gets a cold that lasts weeks and Rose is forbidden by doctors to be near her because they are so vulnerable now to respiratory illness. The distance drives them insane, tears their heart apart. After 4 weeks of staying apart, Rose is hospitalised with pneumonia anyway, then has anaphylaxis to one of the antibiotics. No one’s body, it turns out, can be on these massive doses for this long without becoming sensitized. Rose’s heart and mind are stripped so raw the lightest touch burns, triggers pile up and overlap, flashbacks descend like lightning storms and the nightmares rise like black floodwaters full of dead things. They are tormented by the fear it would have been better if they’d died, and it’s a mind virus resistant to nebulous hopes of a different from planned but still bright future.
My friends and family hold onto me and I hold onto Poppy. I flip my life around as a single parent. Gradually my capacity returns; I can wash dishes, cook meals, be present, plan adventures and crafts, go hours without falling apart. Plug the holes in the boat, make new plans, test new adventures.
Hate the circumstances and don’t hang blame where there isn’t culpability.
Fury at the situation eases my self hate. I can breathe again. It’s not fair and it’s not my fault. Sometimes life is just hard.
Let go of everything I can’t have. My lover, my beloved growing old alongside me. The family, waking in bed together in the mornings, holding each other tight after each fright and each good news. Let it go. Face what’s in front of me. Rose fighting for their life and not knowing what it will even look like anymore. Poppy needing a childhood that’s safe and adventurous and connected. Hold onto all our values and ideals. I can’t be half Poppy’s world anymore. I can’t work in the background knowing Rose is there with her, filling up that wonderful tank that needs connection and attention and delight and fun. I can’t be half a parent. Step up. Show up, count my blessings, hold tight onto everything good and beautiful and precious. Fight like hell for it. I nearly missed out on this. Let go and hold on.
Rose swims and drowns. I am no longer the carer in the middle of their story. I watch from the sidelines, try to throw life savers. Grieve. Train my mind to stop going over every conversation, looking for the place it went wrong or what I could have done differently. Stay focused. If I drown too, so does Poppy. You can have an existential crisis or you can have a life. Choose wisely. Hold tight.
I don’t know what happens next. I’ve found I don’t really get used to the scares. I want to be home and nearby when things are bad even when I’m not welcome to visit. Old habits. When things get very black for Rose I struggle to sleep, to think clearly, to be grounded. A fog descends that makes daily life so hard to manage. The terror fades into the background but it never goes away. In some ways I’m still waiting for them to come back from a war. I have to keep finding my way into the new world, creating it every day. Building on new habits, creating the security, the consistency, the patterns and connections and community that buffer us from these storms.
We are all losing who Rose was, and they don’t have words for this. No one can come through these experiences unchanged, and right now change is their only constant. They are in flux. They are in torment. They are in love, in pain, in the middle of it all, bound up with death and life and hope and dreams and grief and loss. They are profoundly lost and struggling towards a new future they can’t envision. We may yet bury Rose this year, or Rose may emerge in some new form, to a new life. None of us yet know the ending of this story. Whatever the ending, I must live with it, and Poppy must live with it.
There’s grief and shock and sorrow. Rage, despair, pain.
And there’s acceptance. Grace. Love. We accept the things we cannot change. We let go of what we cannot have. We hold onto what’s precious and in front of us. Over, and over again. We face life with as much love, courage, compassion, and humour as possible. Let go. Hold on.
Rose has made it out of the hospital! They are getting daily visits from nurses and doctors and have so many appointments back at the hospital next week we could just camp out in the carpark, but they are home. We are out of life and death and into recovery and adapting. There have been many tears. They are in severe pain. When it gets too bad their blood pressure goes up and their oxygen levels drop. They have a complex medication schedule with many conflicts that need close monitoring. The medications that are healing the lungs are risky for worsening the mrsa in the knee. The psych meds are risky with the antibiotics. They need crutches to walk, which the physio has suggested will be needed for the next two years. There’s a lot to adjust to.
We woke up yesterday morning before Poppy and held onto each other through a deep cry. That was really scary, and we have a lot of work ahead of us. Rose’s allergic reaction is so rare it has never been recorded in someone who is not over 65 and male. It will be written up so that other doctors are aware of that possibility, given how often it is fatal.
Shock and fatigue, dragging Poppy around to appointments and chemists and trying to gather everything we need to care for Rose and restore as much independence as possible. Depression punctuated with panic. Insomnia, irritation, grief. Vulnerability.
And every day, these precious moments we thought might not happen again. Poppy playing games with Rose and giggling madly. Shared dinner. Cuddles. I went and brought a bunch of craft things so we can sit together in the evenings. Rose has Lego kits, I’ve started a diamond painting with Poppy, and she has stickers and foil and a book of bugs. Mindless, mindful, soothing.
It’s really hard. We’re really lucky. Friends and family are helping keep us afloat with safe friendly company and connection. NDIS support will help take on more tasks that are too much for me, such as the driving to so many appointments. We snatch moments of hard won normality like lunch with friends, or a board game night. Breathe it in and find the tenderness and patience we need for each other, for recovery, for our new normal.
Rose continues to improve, much more gradually than expected with fun mini breathing and pain crises that trigger a flurry of reassessments and new tests and visits from ICU. Back on the ward and into the chaos of constant plan changes; one morning they are suddenly told they are fasting again for the next knee surgery, then taken off fasting and told they don’t need one, rinse, wash, repeat. The surgery is simultaneously urgent, not urgent, and unnecessary. The rollercoaster of emotions runs the gamut from terror to profound relief, frustration, exhaustion, rage. New tests find no new horror, just very injured lungs taking a slow path to recovery.
Doctors loom in the doorway telling us nothing is wrong, something new is wrong, the lungs are permanently damaged, the lungs are healing well. Veins collapse, tests intrude, a machine positioned behind the right ear screams persistently. A stranger comes into the room looking for green containers. A disgruntled nurse dismisses breathing stress as panic, until someone more senior applies the machines that show it’s not. But the most devaluing ideas have the greatest hold so for hours afterwards, Rose insists it’s only panic and won’t apply oxygen. They’re told to never get pneumonia, as if getting pneumonia is a poor personal life choice or a moral capacity they have control over. The future is rosy. The future is bleak and full of chronic illness. The future is unknown. The doctor that was coming can’t be found. They are always around the corner but never quite here. You’re not allowed off the ward, off the bed. You must get up, must exercise the knee, mustn’t let more deconditioning occur. Panting, breathless, sleepless. There were donuts in the cafeteria, but no one else can find them. Life is freefall in limbo. Morphine eases the pain so sweetly it brings it’s own terror of addiction, something within fights the peace.
Stop crying, says a technician entirely without feeling, I can’t get clear images when you’re crying. Sobbing is no longer considered withdrawal of consent. I’m sorry today is hard, is there anything else we can do for you? asks the soliticous nurse standing carefully two feet away from the trauma zone of a body that is no longer covered by the dignity norms of regular life outside of a hospital. The only nurse on the ward to use Rose’s real name and pronouns.
The shampoo smells like hospital. The hand wash smells like blood. The moisturiser smells like pain. The deodorant smells like unwashed hair. The food smells like dying. The massage oils smell like shitting the bed.
The hours folds into days, tesselate into years. Life continues out of reach beyond the boundaries of the hospital walls, weather is a private joke shared among the guests. The mind becomes primal, some collapse into despair, others like Rose spin into caged animals desperate to fight or flee. Friends and loved ones reach out hands to soothe, but where we see safety Rose sees the covid patient parked next to them in the overcrowded corridor, the stressed and frightened nurse, the medication drip poisoning them.
We have all walked into a dark place, but not the same place. We don’t share the same views or yearn for the same paths. For me, hospital is becoming a normal part of life, we weave it in as best we can. Picnics, lego, Poppy, card games. We come and go and learn the paths and flows and what days the parking is easiest and which wards are most peaceful and start to know the staff by name, share updates in line at the cafe. It’s horrifying but banal compared with the morgue.
For Rose the hospital is punishment for failing health, they must earn their way out through a gauntlet of requirements: less oxygen, better bloods, less pain relief. They rush the process and trip. Life goes on without them. Someone feeds the cats. They bleed out of patience and gratitude. There’s no place to take terror or rage. Peace is unstitched by confusion, the stuffing comes out, floats free, dissolves. Within the quicksand of unknown outcomes, unstable condition, multiple teams, and constantly changing plans, they cannot help but struggle, try to find the surface where they have some kind of power and plans can be made. So here we are.
Not bacterial pneumonia after all, a rare and severe allergic reaction that filled their lungs with pus and nearly killed them. They are still in ICU but their lungs are getting stronger every day. The darkness of losing them starts to ease back to a terrifying memory. Doctors argue about the best timing for the next surgery. We talk cautiously about a holiday. We pencil in the tomorrow’s plans and roll with the changes. Startle at every new symptom. Look at our tired family and friends through eyes full of gratitude.
Poppy has been buffered from a lot of the intensity of the last week, but she’s still aware of changes and loss. She had a meltdown yesterday and I shut myself down so I didn’t meltdown with her and could be patient and firm. Then found myself slipping into the horrific depression that’s been biting at me and my heart broke.
A few days ago my whole future, Poppy’s life, and all the memories of me and knowledge of me that only Rose has nearly fell into the dark and I’d have given anything to just have them survive. How the indescribable relief of their life can exist alongside such bleak emptiness I can’t fathom. It’s not the screaming blackness of grief, it’s a greylands of disconnection. It felt like something else fell out of my world instead. Poppy left trying to connect with an empty parent. Me trying to find a sense of self and hope in my own emptiness. Undo that shutdown and coax feeling back. Talk soothingly to myself. Try to make sense of the triggers. Sit near people I love and find a sense of connection. Pieces of myself like tiny lights in the dark, winking on and off in tiny constellations. Everything fragmented.
I want nothing more in the world than to bring Rose home and share a life, yet living that life is so confusing. I can sit in the hospital and read and rub feet, I am familiar with that role. Here in exactly the life I want so much for them. I have to work hard to anchor myself to the moment and not get lost. These are good people around me. A morning pushing Poppy on the swings is something to treasure. There’s a lightness of heart I don’t have, numbness layered over terror and rage. I feel unseen and I don’t know how to make myself visible or if that’s even a good idea. I feel heartbroken by life. I just want my people alive, I’ll deal either else we have to. This is a truth.
I want a good life for us, and I’m not sure what that is, or how to do it. Also a truth. I’ve worked so hard to get here, with a home, family and work, with a loving community, and yet. I’m so exhausted and so lost from myself. How can it be so hard to live the life I’m so desperate to protect? Is that autism or just exhaustion? How can I feel like this when the news is actually, incredibly, unfathomably good? I want to go back to yesterday when I was lit with energy, indescribable relief.
I eased myself back into existence, soothing the disconnection. Shutting down my feelings to parent has to be a temporary thing, but I seem to get stuck there. I keep reaching out. I find moments to cry.
I just want Rose home and to hold on and be held onto. Nothing makes sense in my head. I can’t do this on my own.
Rose and I had been talking lately about me starting writing again. We talked about how their nickname Rose didn’t feel right since they came out as non binary and starting using they/ them pronouns earlier this year. We talked about my sense of unfinished business since Jay, and what I would need to do to feel like I could draw a line in the sand and start again. We talked about how I’m running a business now and sharing deeply personal things could have unintended effects on staff, clients and colleagues. And we discussed my love of writing and my sadness at losing the blog and feeling cut off from it.
This was not how I planned to start sharing again. I don’t have a new nickname for Rose. I don’t have resolution or answers. But I’m being asked how I am every day and I don’t have words for that I can say without screaming.
Dearest Rose is sedated and ventilated in ICU, battling MRSA ‘golden staf’ that has chronically infected their knee following a routine surgery, and since spread to their lungs in a virulent pneumonia. Four days ago they merely had a bad knee and a slight cough. It has moved extremely quickly and taken over both lungs.
I’m exhausted and distraught. I want to cry, scream, vomit, and violently attack something. I visit every day and help wash them, rub their hands and feet, read to them. Then I go out to my car and cry hysterically. Then I come home to Poppy and try to be her connected and safe person. My community are tired, 2020 has been unkind to many of us, but they are also rallying. Poppy has a small crew of people she feels safe with this time, which is buffering her. She tells me she misses Mama’s squeezy hugs and asks me when she herself will die. I feel so depleted. I was struggling with exhaustion and depression following all the other surgeries and stress this year already. It feels like my reserves are exhausted.
There’s so much noise around me. I’m still writing to Rose so they can catch up on messages when they wake. I’m so scared and so sad. Everyone wants to help and I can hardly speak. Rose’s hands and feet are chilled cold. Poppy paints herself and runs whooping with her friends under the peppercorn tree. So many people care. I go back to bed to nap. Don’t let this be my new normal, please. I have to find ways to keep breathing even when I can’t be near them. Guilt, fear, regret engulf me. Before they went under I told them it’s okay to be scared, but I want you to focus on the love. You are so loved. I’m trying to do the same. I’m so scared. There’s so much love here.
It’s been in many ways one of the most brutal weeks we’ve had as a family. Rose and I have both been slogging through medical settings in terrible pain, Poppy needs some specialist care, Tonks the cat has needed the vet, and currently neither Rose nor I can drive due to our injuries. 3 weeks ago the sky was clear blue and all was well and suddenly this, all unrelated.
Life is frankly a serious PITA at times. We are getting slugged by expensive medical costs and the need for private surgeons and physio (My elbow is a mess and Rose’s knee) so we’ve shelved plans to bring home a lovely therapy bearded dragon for Rose, and are booking in vital appointments and doing all the admin needed to get some money back through Medicare/ health insurance etc or possibly covered by one of the various low or no interest loans out there for folks like us.
ID live stage photograph of Rebeltheshow, at the Adelaide Fringe, with a musician hanging upside down on a swing, balancing on his head, while playing a ukelale.
And yet, things are so, so good. People are helping us in a host of ways. Work continues to be excellent and something I love. Poppy and I swung in the hammock this evening, watching the light through the leaves of our mulberry tree. My home is clean and the garden is tended and Tonks the cat will be okay.
Last night Rose had to go through an awful procedure where they sedated her and stopped her breathing to relax her limbs enough to allow her frozen knee joint to be manually unlocked. I said goodbye and sat in a waiting room alone at 4am, sobbing on the phone to a friend, waiting to find out the outcome.
I remember kissing her forehead, the flash of her brown eyes: so beautiful, a hint of green in the outer iris, hazelnut brown and bright as golden timber in the centers. The pain so severe and enduring after 7 unbearable hours that she was desperate and shrugged aside the risks: anything to make it stop. I promise I’ll fight to come back to you, she told me. Be at peace I said, trust them, I know you will, I trust you.
It’s been a truly horrible week and yet my heart is so light and singing, singing I can’t contain it all. I think of Adelaide Writers Week last year, Jackie French talking about riding in the back of the ambulance where her husband was suffering a heart attack, noticing the beauty of the world around them. Telling us that no matter how dark things get there’s always beauty and we must look for it and be open to it.
My world today sings. Everything is brighter and more subtle, more beautiful and tender and lovely. I am in love with the world simply because Rose is still in it.
Late last year I began this work after struggling through a day with Poppy when I was suffering unbearable depression and anxiety. We went to the museum in town together and she had a wonderful time. I felt like I couldn’t breathe and that her momentum was pulling me along while I tried not to drown.
I adore using UV inks to explore the idea of things that are hidden from sight or knowledge. That there are things that are only known in certain settings or visible in certain lights. This mothers movements make little sense until you can see the water flowing around her. Her context is invisible to most.
ID: line drawing with black ink of a mother and child holding hands. The child is walking along a low wall, balancing on top with arms outstretched. The mother is floating along behind, clutching her throat and watching the child. UV reactive ink shows a flowing river about the mother that is invisible in regular light.
I’ve been enjoying and slightly overwhelmed by my new Public Health class: Global and Environmental Health Issues in equal measure. I was surprised by the info on systems thinking, which makes complete sense when you’re thinking in terms of ecology, I just hadn’t expected to encounter it and I’m very pleased to learn more about it. My favourite quote so far has been from the Global Health Ethics video by Greg Martin:
If you want me to take your argument seriously, you need to show me that you can argue the counter-factual. If you can’t, then it’s likely that you’ve taken an unthinking, dogmatic position based on some sort of knee jerk philosophical reaction that you had, and you really need to take a closer look at the other side of the argument.
Greg Martin
This made me extremely happy to hear because I’m often frustrated with people’s unwillingness or incapacity to consider opinions they disagree with (even when I disagree with those opinions too). I’m especially concerned at the way this is at times used as a kind of badge of honor that the wrong ideas are so wrong and illogical and irrational they can’t be even comprehended by sane and sensible people like us. Our failures of empathy and imagination are not a merit, nor are they proof against being wrong! Many opinions that are awfully wrong have excellent merit from particular perspectives. Moreover being able to deeply empathise and understand other perspectives is a crucial step to being able to engage them.
Understanding the building blocks of ideas and beliefs – the experiences people are extrapolating from, the accepted wisdom of the experts they trust, and why they are trusted, the logical fallacies we are all so vulnerable to, and often the ideas start to become less incomprehensible and outrageous. Your own ideas are formed in exactly the same ways, which is worth keeping in mind. We are all highly fallible, and we all extrapolate from personal experience and are vulnerable to bias. It’s not unusual, it’s the human condition, however diverse the result. We all share similar processes in how we develop and defend our beliefs, even astonishingly unlikely or dangerously untrue ones that may be experienced in psychosis. The mechanisms and interplay of knowledge, experience, and emotion are surprisingly standard. We have more in common than we think, which can be an uncomfortable thought. It’s far easier to remain baffled by opinions you hate and the people who hold them than it is to acknowledge common ground and genuinely ask “why do they believe that?” – whether we’re taking about someone with opposite political beliefs or “crazy” paranoia. The unsettling reality isn’t how diverse we are, it’s how similar the underlying mechanisms of our beliefs are. We build our ‘sanity’ with the same blocks that also build ‘craziness’ and ‘wrongness’.
The heart of being able to listen and learn like this is a concept I think is best summed up by the phrase “Listening to Understand”. It’s an empathetic stance, but that doesn’t mean it’s mindless – to the contrary the more complex or different the ideas, the more you’ll need to be able to think carefully to reconstruct the framework you’re hearing. It’s not listening to find differences to debate, or even common ground to connect with. It aims to leave unchanged whatever is presented, but to simply and deeply comprehend it and be able to articulate it.
This type of listening is a profound tool to have in your communication kit. It’s an essential aspect of community engagement, research, interviews, and relationship. In formal settings it’s often needed to be able to translate and transport opinions into other spaces, such as understanding why people believe and behave the way they do when you’re trying to design a health intervention, training, or policy. Failures of empathy are behind many failed efforts in governance. When we do not truly understand an issue our best intended efforts are often half effective at best, and may be horribly harmful instead.
In teaching, this empathetic engagement is crucial to bridge the gaps between what people know now and what are trying to teach. Education is far more than imparting information, it is often about a process of shifting frameworks and belief systems. Long after the facts have faded the mindsets and beliefs remain. Poor quality education neither knows nor cares what the current knowledge and beliefs are, it simply imposes over the top. This is why so much cultural awareness training fails, it is underfunded, too brief, and places heavy burdens of understanding bigotry and the ignorance of privilege onto those who suffer the worst consequences of it. It is experienced by those forced to sit through it as a set of new behavior rules and rejected as “PC” thought policing because there so little time and capacity to empathically bridge what the beliefs are now, with the ones you are hoping to instill.
In informal settings it’s about having a more informed perspective on the people around us. We all make assumptions constantly about what’s going on inside each other, what we really think and feel and why we do what we do. We have to do this in order to predict each other and function socially. Far too often when it comes to divides of belief we defend our own perspectives by staying willfully unaware of what and why others think as they do. This failure of empathy means we often set up strawmen not as a deliberate strategy but simply because we’ve failed to grasp the real position of the other person.
This approach of listening to understand is tough in everyday life when we’re trying to have relationships with people who have vastly different and at times flat out incorrect ideas. It takes a special capacity to listen closely and be willing to be unsettled by the internal logic of others’ ideas to begin to understand why people think, feel, believe, and behave the ways they do. It’s also very humanizing and can connect us across divides. It can also unmask narcissism and predatory behaviour that hides in the imitation of caring words but is revealed by patterns of behaviour where people are harmed and discarded.
Being able to listen this way to people very close to us creates opportunities to be seen and heard and validated. It bypasses the trap of ‘who is right’ and moves instead into wanting to get inside the other’s perspective and really understand it. It shows how limited our internal models of each really are, however well we feel we know someone, the real person is always more nuanced and complex. There’s always things we don’t know, influences we hadn’t considered, conclusions we weren’t aware of. Particularly in long term relationships, we often feel secure that we really ‘know’ each other, and more and more we relate to (and argue with) the version of them that lives in our mind. This erodes connection. Being willing to suspend that certainty and deeply listen can profoundly change the context of your relationship.
Empathy is essential to authenticity. It emerges through a range of capacities – being able to hold a range of contradictory beliefs in your mind at the same time, being able to hold your own perspective lightly enough to genuinely seek to understand another, and firmly enough to integrate new knowledge and experiences without losing your own. Polyphony – the willingness to allow multiple voices and perspectives to exist without requiring consensus, is profoundly helpful. Every experience and conversation we have is adding to our own frameworks and beliefs in ways we are often not aware of. The heart of the work for me isn’t just this willingness to accept I may be wrong, and a lack of fear of exploring other beliefs, it’s also about being able to bridge a fundamental tension in how I see other people. There is both a profound diversity, and an underlying common ground to being human. Empathy emerges when we hold these in tension with compassion.
When Rose packs lunch for me, she sends with a little container with my tomato slices, carefully salted and ready to go on my sandwich so it won’t get soggy. I’m a very, very lucky person. 💜
Image description a sandwich with the top slice removed, showing ham, cucumber, and tomato slices. In the background out of focus is a blue lunchbox with yogurt and a banana.
Each gallbladder attack I have is taking longer to recover from. My fibromyalgia flares and I feel like I’m recovering from getting a good kicking. I recently learned that I’ve been cutting too much fat out of my diet to try and prevent extremely painful biliary colic episodes. The extra low fat diet left me with headaches, exhaustion, foggy brain, and chronic pain. Bumping my fats back up has been quite magic and I’m feeling much better. I’ve been scheduled for surgery to remove the gallbladder next month.
Image description: A young child on a park swing. There are trees, lawn, and bark chips. A small green bike is lying on the ground by the swing.
In the meantime I’m muddling along. I used to be so afraid of this place: sick and trying to parent. It is hard. It’s really hard. I’m so incredibly fortunate to have good people around me, that network I put effort into building has saved my life. It saves me when I can text a friend in distress instead of crying in front of Poppy. When there’s someone to pick Poppy up from the ER so I can be treated. When our daycare provider lets me arrive late while I try and coordinate a crisis. My world has flexibility, care, accommodations that ease the sharp edges of my limitations and soften the harshness of the things I’m dealing with.
This creates capacity I wouldn’t otherwise have. So rather than merely the nightmare stories I feared, mostly Poppy and I muddle through. Rose takes her so I can rest or nap. I walk her to the park so she can ride her bike. We snuggle under a blanket with a hot water bottle and watch a movie together. We do crafts or painting on the dining table. She plays in the back yard while I hang washing.
I have a collection of low energy/high pain ‘tough day’ activities like this I can enjoy with her. And I’m still working towards the lower daily effort/systems and routines/life on the easy setting changes I started making last year so that my home and work is efficient, sustainable, and frees up as much energy as possible for the things I’m passionate about – such as parenting, care giving, socialising, adventures, and creativity. With thought, planning, and support, it’s actually still wonderful to parent even in a rough health time. I’m incredibly fortunate and I love her to bits.
Endometriosis, adenomyosis, PMDD, and PCOS is an extremely unhappy combination of troubles. For me it means very heavy, painful, unpredictable periods that often trigger severe depression and sometimes suicidal distress.
I’ve spent most of the last 2 days in bed with a heat pack. Today Rose took the lead and set up a beautiful family trip for us all. She made savory muffins and took us all down south to a beautiful beach for the afternoon. I went for a gentle walk in the surf, Poppy collected rocks and shells, and we all enjoyed watching a seal frolic in the light rain.
Image is of Poppy, aged 3, wearing fabric rainbow butterfly wings and running along a beach.
It was so joyful and relaxed and a safe space to just be. As the rain fell lightly into the shallows where I walked I wept. My heart has been full of doubt and confusion and heartbreak lately. Watching the light catch the water and the foam on the sand, I’m so grateful.
One of the things I fell in love about Rose was her ability to create these beautiful adventures: inexpensive, simple, and so connected to the moment and the environment. I’ve often yearned for these things but when I’m sick or distressed I struggle to arrange them. My initiative is paralyzed, so I yearn but cannot act. I recall many days when I lived in my unit by the beach, longing to go down to the water and unable to. I could never have made it to the beach today, but with her doing all the heavy lifting I could be swept along to something beautiful and nourishing. I fall in love all over again.
Sarah K Reece 