We are going to arrange Tamlorn‘s cremation tomorrow. I have been gathering the poems and sharings from other people, but finding myself wordless. It was very hard to find some way to say what I needed to. In the end, I wrote this poem. All will be burned to ashes with Tamlorn’s tiny body.
Whenever I try to find A way to say goodbye There’s no words in me No poems or flowers that can speak for me Just a scream rising up inside If I let it loose, the sound would break the world.
I don’t know how to say goodbye. I can’t bear this. I can’t bear to face you And I can’t bear that life goes on without you Everything is wreathed in pain.
Are you there? I don’t know if you are there. I don’t know where you came from I don’t know if there is any spirit left After your heart wound down. I can’t, with all my agony, pierce the veil I can’t find absolution I can’t find certainty I can’t find hope.
My abdomen has deflated like a soft balloon My breasts sag gently onto my chest My body remembers you, little one. I loved you so very much and I’m not sure that you knew that.
There’s a pain in me that nothing stops. There’s a terror in me that nothing eases. I feel like running, screaming through the streets Naked, tearing out my hair, like a madwoman Screeching “We’re all dying! We’ve so little time!” The end is coming for us all.
I felt you once, so near, flesh of my flesh Now I do not feel you at all. I cannot hear anything over the harsh sound of my breath Over the frantic beating of my heart Life is brief and it is taken from us I can’t find meaning in this.
Who were we, I think, to love you so dearly? Unknown, unmet, undeserving When the world is full of loneliness and death When so many children grow without love My hypocrisy chokes me I am ashamed.
I wish I knew you and I’m glad I didn’t know you. I think about babies dead at birth, or 3 months, or 2 years Dead at 8, or 16, or 27 – it’s unbearable. I keep dreaming my mother dies. I keep dreaming of losing everyone. And in the meantime, try not to tear my life apart Cutting strings with my sharp pain The brutal arithmetic of loss, the restlessness The need to run, to make a mark, to change something Here in this little life. To make it mean something That I lived, when you did not. To atone.
I loved you, and it was not enough. I do not deserve life, as you did not deserve to die. I can’t make it right. I’m just here, wordless, choked Terror, and loss, and love Empty hands and heart screaming This is what is left of love, little one This silence that has a scream beneath it These empty hands, this empty womb, my breast folded soft against my skin. This is love seen at night, love on the cliff at the edge of the void and it’s unrecognisable It’s sharp as knives and burns like poison and there’s no comforting me It tears my dress and pulls out my hair and runs blood down the inside of my legs This is love in the shadow of your loss, Tamlorn It’s a mad and terrible thing It’s a death, of a kind, a kind of despair The keening howl of a wolf returning, who finds the den destroyed There are no words here, no peace This is love, my love This is how mothers say goodbye.
I am offering a talk in May to share my personal experiences of psychosis and suggest options and resources for people to draw on. So often in mental health we are simply lamenting the lack of funds and resources, especially for those in the country. I want to talk about a situation that is usually an acute crisis needing inpatient treatment and help people create tools to manage safely at home as much as possible. There will be resources to take home and an opportunity to ask questions at the end or privately via email.
This talk is suitable for people with lived experience of psychosis, as well as friends and family, and mental health staff working to maximise supports with limited resources. If you find it useful, I am happy to discuss delivering an appropriate version of this talk to your group or organisation.
For so many people, psychotic episodes are profoundly destructive. Recovery is often a complex process of grieving and repairing damage done to relationships, career, and stable life choices. Sarah is an artist, writer and peer worker who considers herself very fortunate to have already been familiar with diverse approaches to psychosis when she had her first episode. She’s navigated psychosis and prodromal phases successfully at home with peer support, without meds, and without the kind of widespread destruction so commonly part of these experiences. Sarah is a prolific blogger who shares art and writing throughout her episodes. Come and learn about the ideas that have informed her approach, and have the rare chance to hear an articulate, intimate account of psychosis from the inside.
This is a FREE forum at
Mifsa – The Mental Illness Fellowship of SA
5 Cooke Terrace, Wayville SA
1.30 – 3pm
Wednesday, May 27th
It was everything, beautiful, painful, resting, freeing. I don’t want to be home yet. My life doesn’t feel like mine. This coming week I have a massive list of college homework due, a network board meeting, a cremation, and our engagement party.
Still admin. Bank, welfare, public housing, all causing major issues. Promising to call back and never calling back. I am full of a kind of horror about having to try and deal with them again.
The days are very long when I’m free of my routines. They are full of nooks and little opportunities for happiness, a book, a bit of writing, an artwork, a bath. I wish I felt more free, less compulsive, less crowded.
I’m home again. I’ll look for small ways to be more free. Or we’ll run again. Even counting up the cost of nice meals and a beautiful place to stay with a spa bath, the whole week cost less than a night in psych hospital would,and did a lot more for us both. Breaking the routines helps.
Rose has arranged a few days away for us both as a birthday gift. We’re running away from home, but we’re packing all our vulnerabilities, the broken bits of heart into our suitcase. Bringing all the demons along, the way it feels like I can’t quite catch my breath all the time. Bringing the nightmares, the portal into darkness and loss, waking with the memory of rope tight on my wrists, the burning lights of his touch in my skin. Bringing the dreams where I try to make things work out, dreaming the same dream a hundred times and no matter what I try it all ends in loss. Bringing the pain in the lines around my mouth and the futility in my hands at rest. I’m running away from the days that flip from good to dangerously bad without warning, from nights where I only go to sleep after checking with my love if she’ll be safe in the darkness. I’m running from the split in my world: it’s a beautiful day/I’m dying inside: because they’re both deeply true and tearing my heart apart. I’m running away from feeling so good, so loved, so blessed that I’m holding myself back from lying my head in friends laps and crying with joy. I’m running away from biting down on the scream in my chest because there’s nowhere in my world that could bear that kind of pain without catching fire. Running from the house full of tender soft baby things. I’m taking the self hate with me, sewn into every inch of my skin. Running somewhere with wide open skies and deep black nights, somewhere my heart can swell to its true size, feel all the love and all the pain without waking the street.
Whee! I’ve just turned 32 (now that it’s past midnight here). I’m crap at organising my own birthdays. I completely dropped the ball again this year. Lovely Rose organised a last minute party with a small group of close friends which was all I could cope with. It was wonderful. We ate lots of chocolate cake and very good potatoes and chai lattes. We were going to have a camp-fire out the back but it rained all afternoon so we had board games instead. I got wonderful gifts and lots of hugs and laughed a lot and wanted everyone to stay all weekend. 🙂
I worked this morning so I was still wearing face paint. We also bought ice cream and I bought stationary and sorted my book into a wonderful folder with multicoloured tabs and then made everyone look at it and go ‘oooooh’. It’s been a very, very nice day.
I’ve been very sad today. It’s three weeks after the miscarriage surgery today. I feel heavy and tired and dazed. Plodding along in my own little world at my own tired pace while life moves on around me.
There’s been a lot of things to manage and arranging Tamlorn’s cremation keeps getting pushed back. I have a folder of beautiful and touching contributions by other people. I’m still wordless myself. I turn towards it and look at it and there’s just nothing in me. No poetry, no artwork, no words at all. Just a sadness, unfathomably deep.
I seem to have spent today weeping in cars after very nice visits with lovely people. As soon as I walk away there’s a terrible emptiness, a loneliness in me.
I keep working on the book. It’s something I can do. It’s an anchor when I feel lost. I don’t know that it will be worth anything, useful to anyone, worth all this time and love. I don’t know that anyone will read something so obscure by someone so unknown with so few credentials. Self published at that. I feel very small. There’s a weight of self hate like a blanket over me. I need to be doing homework, chasing up money issues because departments that were supposed to call me haven’t. But the words are flowing. My mind is teasing out the knots and puzzles of multiplicity and my life and my approach, constantly. Between emptiness, nightmares, moments of connection with others like candles being lit in a windy place, there’s the riddle to be solved. There’s just grief and the book at the moment for me.
Oh, the joys. I’ve been wanting to write this for ages, but it’s large and complex. I haven’t entirely done it justice here and I’ve touched on some areas that I’ve covered in other posts in more detail so I’ve linked instead of repeating myself. A lot of us with troubles with flooding get diagnosed with things like Borderline Personality Disorder, and although having a word for it can help, it can also leave us feeling very powerless and different from other people, which in some ways can hurt a lot worse. I don’t think we are either powerless or even particularly different. I think we are experiencing powerful things that our culture isn’t good at handling, and often convinces us to respond to in the worst possible ways.
What do I mean by emotional flooding? That place in which you are drowning. Emotions are so intense, so deeply felt, and so long lasting that you feel like your very identity is dissolving in them. You can’t clearly remembering not feeling this way and you start to lose hope you will ever feel differently again. We have a term for this when the feelings are really good ones – mania. But for the black depths of emotional pain or the anguished hypersensitivity of the chronically triggered, we don’t have a lot of words. Which doesn’t help! Decompensation is one way of putting it, but it’s not pretty and describes the effect of it, not how it feels on the inside.
I call it flooding. It’s the opposite to numb. It’s breaching containment. It’s not just taking the lids off boxes full of strong feelings and painful things you don’t like to think about, it’s falling in and having them snap shut on you so you can’t get out again.
Flooded can be an enduring state or a temporary crisis. I’m really familiar with it because I’ve spent a lot of my life flooded. It’s the state of being without ‘skin’ described by people trying to recover from trauma. It’s the ‘highly sensitive person’ label used by those who flood easily but don’t usually identify trauma. It can be hell. Exhausting, overwhelming all your resources to cope, and rapidly getting you to the point where you hate yourself and your life. It often leads to a state of frantic agitation which can be dangerous. People feeling frantic distress may resort to self help measures that seem crazy to those around them, and often to themselves once the crisis has passed.
I can only really describe flooding from my own perspective and much of this may be fairly unique to me, but I’m hoping there’ll be points of recognition and useful ideas for others too.
I flood quickly under certain circumstances. The first is when I’m chronically triggered. That might be a particularly bad week where a lot of big triggers happened to line up, or it might be that I’m particularly vulnerable at the moment and triggers I could otherwise handle are setting me off. One big trigger can cue a level of sensitivity and vulnerability that make me exquisitely attuned to all other triggers around me – I lack psychological ‘skin’ and can’t buffer the world anymore. Everything gets ‘under my skin’, everything feels personal, I can’t shrug anything off, and the littlest things feel like the straw that broke the camel’s back. I’ve touched on these issues before, you can read a little more about them and my coping strategies:
The opposite process can also flood me, not triggers from outside but the result of internal processes. When you’ve come through anything that causes big feelings and intense thoughts and questions, most of us learn that to get out of bed in the morning we have to contain them. We put them in a mental box (or the cellar, or walk away from the big pit, or however our mental landscape works) and go focus on the rest of our day. This is a really useful skill. However it has a couple of risks. One is that triggers can set off a really huge reaction if they breach this containment. That’s why I can go from completely fine to a panic attack or overwhelmed with tears about baby stuff at the moment. My miscarriage is fresh and I have a lot of big stuff in boxes that can flood out and overwhelm me. The second risk is that, once we’ve boxed up the big stuff, we can find that walking back towards it voluntarily takes a bit more courage than we can coax up. Worse, our culture of ‘move on and get over it’ and our warped ‘recovery oriented’ mental health supports – when they think recovery means not feeling big stuff, can punish us for opening those boxes and warp our mindset to a point where we think that being in pain is sickness, failure, or us doing something wrong.
At that point we can shift our focus from containment – a highly necessary skill! to suppression. Where containment boxes stuff up so we can focus and be safe and do day to day things until we have a safe and appropriate time to feel and think and open the box back up, suppression coats the box in concrete and drops it in a lake. We box things up with no intention of ever going back for them. When they rattle and howl and start keeping us awake at night, we concrete the lake too. The trouble with this is that this stuff has buoyancy. The deeper we push it down, the harder it pushes back up.It also contains key aspects of our self. Little bits of us gets boxed up too. The reason the stuff wants to come back up is because we need it. Like iron filings trying to reach a magnet, it tries to come home. But we have split off from it and don’t recognise it as ourselves anymore. It’s like your lost cat turning up on the doorstep in a storm, wet, covered in mud, howling like mad. We freak out and slam the door and shut the windows while it cries, growls, and starts to attack the door.
Suppressed material isn’t trying to torture you, it’s trying to finish a key part of a process that you started – reconciliation. When we never make space for it, it randomly ruptures through a thousand feet of concrete and bursts all over our life with the intensity – and sometimes the unseeing rage – of an abandoned child. When we finally get it back ‘under control’ we feel vindicated that of course this is the right way to deal with it, because it is completely irrational, intense, dangerous, and unmanageable. It is flooded. But the truth is, this is the outworking of our process.
In suppression, we often turn against ourselves with shame, rage, fear of this feeling of being out of control, and often harsh self punishment. This is what does the harm, not the flooding, but our misunderstanding of it and response to it. Intense feelings and confusing questions are a normal part of life. They are frequently but not always triggered by experiences of change, loss, or trauma – not always our own. They are not mental illness or weakness or brokenness. They are our responsibility to figure out how and when to deal with them. Being flooded is not an excuse for flooding or abusing those around us. But it’s not a bad thing, not something to be ashamed of. It’s just human. We need food and air. And sometimes we need to feel very big feelings and ask very hard questions. There’s nothing wrong with us.
Shifting from suppression and self loathing (I hate myself) back to containment is possible. When suppression has been used a lot, initially the mind fights all forms of containment. Even putting aside little feelings can become impossible because you have broken trust – your mind no longer has faith that you will come back for anything you manage to compartmentalise. In an effort of elf preservation, it tries to stop you adding anything at all to the massive, growing collection of suppressed material you already have trying to break back through into awareness. Basically it doesn’t want you to feed the volcano any more. As you start learning how to safely let out small amounts of contained stuff, without blowing up the whole volcano every time (it’s not always possible), your mind shifts gears. It gets that you’re back on board and starts working with you to contain things. You have to coax and prove that you’re trustworthy, but it can turn around surprisingly quickly. This can simply start by inviting your mind to help you put aside your reactions to a trigger until you can get home, and then promising you will make a cuppa and sit in the back yard and let the feelings and thoughts come up – or however it is you prefer to feel big things.
For those of us with multiplicity, parts can be flooded, that can be their role. We often hate the part instead of hating and dismantling the role. In fact, whole groups of parts can be flooded. While they can feel like the worst thing imaginable, and impossible to let out or connect with, they are probably what stands between you and a lot of big stuff. They flood so you can feel sane and think straight. For me, I have taken on the idea that my job isn’t to reject them but to start to figure out how to look after them. If my most likely to self harm part comes near the surface I push her away until we’re home safe, and the she can sit in the bath or write in the journal or paints inks on our skin as she needs. (Wrist poems)
Another common trigger for being flooded is approaches that treat the flooding itself is useful. Ideas around catharsis, ‘letting it all out’, the need for big ’emotional releases’, and some approaches to anxiety use flooding because on the other side of flooding is some outcome they want. A common example is people who have a perfectionist approach to therapy or self improvement and try to ‘process’ all their feelings or triggers all the time. I explore this more in
Flooding can activate attachment and makes us bond to others nearby. This can be a very valuable experience of being safely supported and connected with when we are overwhelmed. It can also be a form of dangerous trauma bonding in which attachment figures are sometimes experienced as safe and sometimes so frightening or intrusive that we flood – and in response to that flood they shift back to being caring so we bond. Some parenting approaches teach parents to deliberately induce flooding in children using methods such as restraints, because the resulting bonding is thought to be helpful – however, most therapists argue that bonds created under such duress are problematic and that the experience of being so intruded upon and overwhelmed that you are pushed into flooding does long term harm to a child’s perceptions of safety and autonomy that the trauma bonding merely conceals for a time. When this occurs without good intentions on the part of the adult the same process may be described as ‘child grooming’.
Some approaches to phobias also deliberately flood people ‘Flooding’ is in fact another name for ‘exposure therapy‘ where someone is deliberately overwhelmed with triggers to try to break the link between the trigger and the flooded state. Forced to confront what they would far rather avoid, for some it may reprogram that link so that trigger no longer evokes panic. It can be a powerful way to reality check a broken internal alarm system – see, you were so scared, but nothing bad actually happened. For others they may simply snap from being flooded into being dissociatively numb. The way exposure therapy is timed – some therapists take patients beyond the point of hysteria, while others move extremely slowly and practice relaxation and calming skills through the process, and the way it is handled – if the patients wants it or is being forced into it, possibly impact which outcome occurs – a genuine changing of the trigger or simply a dissociative break.
We ourselves can trigger these same dynamics with rapid changes of approach to our own triggers and vulnerabilities – going from extreme avoidance to extreme confrontation of triggers is common for those recovering from trauma. It often sets off cycles of being flooded and numb. We also feel deeply frustrated that ‘no matter what we do’ we still feel out of control and overwhelmed.
We can cycle between numb, ‘normal’ and flooded. This makes us feel chaotic and crazy! We can also get stuck in a flooded or numb space. For those with multiplicity, this kind of cascade switching can be a system desperately attempting to self regulate by giving each kind of part some time out. (Multiplicity – rapid switching) The problem is that you don’t get to choose when it happens and feel horribly out of control. You also probably use all the times that you’re numb or feeling okay as ‘proof’ that you’re not ‘really’ needing extra care or having big feelings, you’re just kind of faking or being weak and need to try harder – ie need to suppress more. Self care becomes suspicious self indulgence in your mind, especially if it acts as a trigger and the mind assumes that self care means its an appropriate time to let out some big feelings. It doesn’t work, we think to ourselves. It just makes me weaker and sicker! Being mean to myself is much better, it makes me stronger.
Other people being kind to us or praising us can have the same effect – sudden flooding can be cued simply by feeling slightly emotionally safe. This can make you try to self regulate by maintaining a chronic feeling of being unsafe. Over time you exhaust as well as emotionally starve and your containment starts to fail. Flooding becomes a regular part of your life and you are at constant war with your mind to keep it at bay, using what has always worked in the past – punishment, self hate, chronic anxiety, and staying away from people who treat you well. Traumatic replay of horrible events can easily be part of this dynamic too. These approaches make complete sense but they take you nowhere good in the longer run! Bits of them here and there aren’t the end of the world on bad days, but if this is how you always approach flooding you are in for a rough time.
For me, being pushed for intimacy instead of invited into intimacy can also trigger flooding. Some situations (eg therapy with someone I don’t trust yet, or a relationship where connection is being demanded) will inevitably flood me. If we are being asked for things that are currently in our mental boxes, being contained – whether that is ‘be more vulnerable with me’ or ‘I need you to show me how you feel’, my mind will open all the boxes if that is the only way to be obedient or to have a connection. That isn’t the end of the world unless I or the other person don’t cope with the flooding or I get stuck in it. I’ve had this happen a couple of times and ruin friendships. These days I’m a lot more careful of this dynamic. People who have empathy for your vulnerability will usually cue it just by being attentive. Those who demand it are often those who are least equipped to cope with it.
Good trauma therapists are familiar with these dynamics and don’t panic if someone floods, but they also don’t try to open all the boxes at once. I recall a great example given by Barbara Rothschild where she uses the metaphor of carefully opening a shaken bottle of fizzy drink bit at a time, so you don’t get yourself covered in drink. Here’s a talk by her about this idea with a couple of easy to understand examples like that one:
It takes some practice to learn containment again and work with your mind when you’ve been using suppression and feeling intense fear or shame about your flooding. It’s especially challenging when your social network doesn’t get these ideas and supports the suppression-and-shame approach without realising what that’s costing you. A lot of the ideas around phase-oriented trauma therapy is giving people time and support to really learn, experience, and trust this different approach before opening the really frightening boxes. Of course, you don’t need a therapist to change how you think about and respond to flooding, and many therapists will actually make this process worse. I know of one locally who would insist that any client who wept must leave the room and stand outdoor the closed door. They were not permitted back until they ‘had themselves under control’. Bad therapy frequently confuses obedience and suppression with ‘recovery’ and would make this process of turning towards yourself, tuning in to yourself, and working with instead of against how your mind is trying to work, much more difficult.
It can be done. You can normalise flooding and have compassion for yourself in this state without just being overwhelmed by it or fighting it. You can learn how to open and close boxes again – not perfectly, not always exactly the way you would like, but enough to be both human and able to function. You can find value in the intense states and learn with experience that you do pass through them. It’s not fair that some of us have a much rougher road and a lot less skin and we build up huge amounts of intense stuff to deal with. But it’s also part of a more profound experience of life. Intensity isn’t just about mania or despair or depersonalisation. For myself at least, there are also experiences of deep connection, spirituality, the profound, the sublime. I envy the undisturbed a lot less when I realise how deeply connected to my own heart I am, the passion with which I have lived my life. It is precious to me that I can feel, even that I can be stripped of name and self, that I can find myself at 3am naked on the cliffs before the void in my own soul, in a kind of utter freedom. That I can sink so deeply into love, contentment, peace. I have lived deeply, and I would not have it any other way. I have suffered, but my heart has also been made larger. The size of the cup that brings pain and bitterness to my lips is the size of the cup that brings joy. Even in pain there is something of value, something human. To be deeply moved, to know passion, to know life. To know and recognise and be able to sit with flooding in others without being swept away. It takes courage to live in hard times, to live with an open heart. It can be a thing of great beauty.
Rose and I went off to a baby expo on the weekend. We already bought tickets, back before we were pregnant. After the miscarriage we weren’t sure if we would go or not. In the end we decided to turn up and had a backup plan if staying didn’t feel like a good idea. We did stay, we walked through the whole expo and looked at everything. I bought a pregnancy protein supplement. There was nothing there about miscarriage or loss. There was a miracle babies group for premmies. They had painfully tiny dolls in humicribs with eye masks on. It was hard to look and hard to look away.
We held hands everywhere. People assume you are sisters or friends otherwise. You can feel really invisible. Holding hands got us a few stares and whispers. It’s always nice when people figure it out and take it in their stride. I found myself telling a lot of people about Tamlorn when it came up. Nearly everyone asked if we had kids or were trying. It felt really weird to talk about it and really awful not to. It felt really false to be talking about it without feeling or showing any pain, but I couldn’t let any of that out or I wouldn’t be able to breathe. By the end I was feeling really fragmented and tangled up.
We saw these tiny shirts with the lovely messages and went back for them at the end. They read “You are my greatest adventure” and “A smooth sea never made a skilful sailor”. Pretty appropriate. The lady at the store was really kind, didn’t offer any advice or tell us about her cousin/sister/friend’s losses, was just sympathetic and sweet. She ran after us and found us after we bought the tops and gave us the little dog. It was really touching. This is what being open does, you get the weird and horrible but you also get care.
I feel pretty mixed about going. It was nice to feel that we’re still trying to conceive, still planning and going to make this happen. But it also hurt and I still don’t know how to speak about it without feeling so disconnected and weird.
Today I didn’t know I was being brave, and that’s kind of worse. I went off to a henna gathering and it turned out everyone else there was a Mum and had brought their kids or baby. I came home in tears and found a post on facebook by someone who was upset that their efforts to cheer someone else up had not gone down well and “some people just need to be negative”.
Then I had a panic attack and went back to bed.
Apart from getting up, I’d say my biggest achievement today was buying a plant for Rose. It was a nice plant.
You know one of the most helpful things so far? Our GP being totally unsurprised that Rose and I are having rough days when we’re feeling suicidal. She wasn’t flippant but she was also unfazed – “of course you are! Your baby only died 2 weeks ago.” Weirdest thing but neither of us have had a day like that since. Oh I mean, there’s nightmares, and there’s panic attacks, and there’s hiding under a sheet on the couch. But yeah. Having permission to be really impacted without trying to get over it, recover, look like we’re coping. “Grieve all you need,” she said, “delayed grief is hard and messy. Let me know if you’re in danger but I expect you guys to be really hurting and that’s okay”. She called us mothers.
Excerpt from my Photography Journal for College, 2014. Topic set for the class “Self Portrait – Reflections – Identity”
It’s not about ‘managing’ pain. How do you eat pain? Do you drink it? Or breathe it? Does it stay locked in your body, in muscles like rocks that strain to armour you against the world? In a stomach of snakes writhing, in eyes that are dry and blink too much? Do you find some way to digest it? Grind it down into small pieces with poetry, wash it out with tears? Do you hold onto it, storing each memory, like wine, ink on skin with tattoos? If you are suffering unbearably you had better find a way. All of us will one day need a way to bear unbearable pain. All of us will need ways to grieve, to be emptied, to be changed, to be burned to ashes, and to live.
***
I use the metaphor of fire for pain, a lot. I wonder if I can reflect flame onto my skin? Or into water? The dead leaves in the pool work well as a metaphor. Loss, autumn, winter, death. Rotting down.
There is an ocean of pain in me Some days the tides Are high and I drown – But I do not drown.
***
When I’m sick my world becomes:
Bed
Bath
Armchair
Computer
Toilet
Fridge
What’s the point?
What am I saying?
What questions am I asking?
What am I showing that hasn’t been seen before?
What am I exploring that I’ve never shown?
I talk about pain and shame but I don’t show photos of my sink full of dishes.
It doesn’t seem like enough to just show the illness. Why? Why do that? It will make people uncomfortable. Feels like self pity. I want to – show something people don’t usually get to see. Tell a side of the story that is about more than loss. What don’t we tell about?
Transcendence
Spirituality
Rage
Hope
No one sees me paint in the bath when my pain is bad but I’m desperate to create. There’s something there – raw – an energy – will to overcome.
People think sick people’s lives are boring and worthless. We are useless, lazy or objects of pity. We are defined by our conditions. We are forced to be naked in public – wearing our private personas in the public arena without the protection of a job to use when answering the question “So, what do you do?”. Can I answer that question in a zine in honest, unexpected ways?
So, what am I making for this zine? I want to photograph my soul. I’m crazy.
Excerpt from my Photography Journal for College, 2014. Topic set for the class “Self Portrait – Reflections – Identity”
Tutor G in first class – asking us who we are and what represents us. Asks me if I am my dreads. I’m startled by the idea. It seems frighteningly reductionistic. Like seeing me as my gender/skin colour/height/taste in coffee.
I am not these things. Maybe self identity is as much about being able to be seen as something more than a collection of stereotypes and assumptions – the ‘headline grab’ of a person’s life:
“Nothern Suburbs Woman”
“Prostitute”
“Avid Gardener”
“Psychiatrist”
“Father of Three”
Are we not more than these things? More than our job, our body, our family, our disabilities, our losses, our skills, our loves? Is there not something beneath and beyond things? Some capacity for growth and change, some sense of self that can be authentically expressed or violated?
Who would you be
If I took from you Blue sky Unscarred skin the hope of food What would look back at me From your cage?
How do you calculate self?
I am not a list of my skills and tastes and interests and fears and qualities and attributes. Do not my masks tell you ask much about me as my face? Do my lies not reveal as much as my truths? Do my fears not tell you as much as my loves? Am I not as defined by what I am not as what I am?
Tutor S says we are a synthesis of these things, that in the glue that binds them we find self.
I think we are more than the sum of our parts, and every time we forget this or fail to see it in others we do a violence.
Reductionism.
Loss. To be consumed – by fear, pain, sickness, grief. To be forged. To not rise above, or avoid, but pass through. Into the shadow. Into terror and anguish.
“I think” she says, “In one way or another, the topic of identity will be your life’s work.”
“I know,” I sigh, “All my works are self portraits, no matter what they look like. I’ve done my best to come to terms with that, it’s that or stop creating.”
Excerpt from my Photography Journal for College, 2014. Topic set for the class “Self Portrait – Reflections – Identity”
Is it that I show you the world, or is it that I show you my world?
I think of my wrist poem series. Something I’m ashamed of because it so publicly displays my brokenness. And yet something I wear publicly because I need to display it.
My blog, which is so often about tearing down the image that is being formed of me. Tearing away another layer. Being more vulnerable. I can’t bear to be suffocated by my own ‘public image’.
Walking away from class, having talked about the DID, feeling myself sullen and afraid and angry. The shying away from (their) curiosity. Don’t see me as my ‘identity disorder’. Don’t see me as my pain. Don’t see me as my successes. You don’t see me. (And I don’t see you) Walking in the twilight and a girl smiles at me as we pass each other crossing the road. And suddenly I’m happy again, the spell is broken, I’ve come up out of the dungeon into the autumn air and the world is beautiful and velvet with buses and my mind is full of thoughts and I think of the aspect of my queer identity and how I’ve not even touched on that yet, yet this beautiful girl with dark hair and the lovely generous smile has woken my heart and reminded me of joy. Who am I? I am a student, sitting on the red steps of the Tafe, watching a woman lift a stone from her shoe as night falls and the buses go home, because I have to write these thoughts, because I feel alive again, because she gave me a smile and made my heart glad, because I talked about soul with my tutor and she gave me back my identity as an artist.
Life doesn’t get in the way of making art,
Life is the subject of art.
If pain stops me from painting, then write about pain.
If sickness stops me from sculpting, then document it with photographs.
Go into the places of fear and vulnerability. The things I’m reluctant to explore or display. They’re not distractions, they’re the subject.
The art that I make because I must, to keep myself alive is ‘real art’. The photos I take to document the hard times, the ink on my wrist that stops me from slashing it, the poems in my journals. Even when no one else sees them. They are art. They are not a distraction from the ‘real’ art.
This is art too, this place of rawness, intensity, need. The place I’ve learned to shield and conceal. Does anyone write what they really think in these journals?
What an idea.
It starts with this: put your desk in the corner, and every time you sit down there to write, remind yourself why it isn’t in the middle of the room. Life isn’t a support system for art. It’s the other way around.” ~ Stephen King, On Writing.
Last year I did a class of Photography where we learned the basics of a darkroom, and made photograms, photomontages, acetate negatives, handmade negatives, and zines. The topic chosen for us to explore in the art was ‘identity’ which I wrestled with a lot at the time and found that I slowed down on writing this blog while I was feeling so exposed. I shared that struggle in Choices and Soul. I’ve dug the journal out this week and thought I’d share my work. Here are three photomontages I created about the intersection of disability/chronic illness and identity.
Our three cats. Sarsaparilla hates sleeping indoors about as much as he hates Bebe. Sars is the black chap on the left, Bebe has the laser eyes.
Tonks is helping me write my book.
College is over for the term! I’m on a two week break. I have a fair bit of homework to do but I’m taking a couple of days off first. Saw my doctor today who was not fazed by depression or suicidal feelings, considered them all to be perfectly normal grief and trauma reactions, and that the fact that Rose and I are getting dressed and leaving the house most days and talking about Tamlorn are all really good signs. Her biggest concern was for us not to rush through it all but go at our own pace, as delayed grief is complicated. She didn’t mind calling them a baby either, and made it clear she considers Rose and I to be mothers. Good doctors are a blessing.
Rose and I have received this care package from Pregnancy Loss Australia. Like everything else to do with grieving Tamlorn’s death, it’s deeply bitter-sweet, both helpful and painful. Deep breaths.
Yesterday Rose and I drove for about 6 hours home from our little get away. I don’t cope with coming home sometimes. By bedtime I was a mess, head full of noise, overwhelmed by emotional pain. We lay together in the lamplight and I pulled apart my heart in confession: “I feel so bad at times I would do nearly anything to stop it.”
“My thoughts are turning to suicide.”
“The contrast between glowing with health and hope in pregnancy and now not caring about my body and wresting with self harm is shattering.”
“I feel like I’m letting you down.”
“I feel scrutinised and under pressure to cope gracefully or at least to hide how much this is hurting so that I don’t seem ill. I feel in a double bind where wanting a child very much and loving them very deeply is seen as a sign that I would be a good parent, but grieving them deeply and being affected by their death is somehow a sign that I am worryingly ‘mentally ill’ and would not be a good parent.”
“I want to run away from my life. I want to hide under a rock. And I don’t understand it because I’ve worked so hard for my life. I love it. But right now I hate it.”
Rose stepped into that place with me. She didn’t argue or hush me. She shared her own pain and sorrow, her own desire to run, the sense of pressure to cope. “I thought you were coping so well and I was the ‘ill’ one.” And in that sacred place of shared pain, a relief. Illuminated by the fire from our burning dreams, we lay naked in darkness and shared our hearts with gentle, brutal honesty and I felt like I was breaking and I felt like I could breathe because I wasn’t alone. There’s a kind of nakedness that has nothing to do with clothes. She wiped tears from my face and on impulse, scrapped grand plans for a big romantic reveal. She dashed into the rain and found the ring hidden in the shed and sat on the bed with me to tell me how much I’ve changed her life, how deeply she loves me in my light and darkness, how privileged she feels to be so close to me, to all of us who are Sarah. She asked us to be her family and gave us this ring.
The ring is from the same jeweller that made hers, all the coloured stones are sapphires from around the world, and the diamonds are ethically mined. The rings are similar but different, just like us. Rose’s ring:
So there in the dark it shines on my finger. She loves me as I am, not just for my best days, my successes and triumphs. Even in darkness, broken-hearted and lost, she loves me.
“I don’t want this ring to be about pain or Tamlorn’s death. But it just felt right that you need a symbol now to take with you to remind you that I love you.”
This is our family. The rain crashes through the night. “If you have to run away, I’ll understand.” I tell her, “Run and be safe and come back to me.”
“If you have to run, just tell me.” She says, “We’ll find somewhere safe for the animals and run together”. We lay blessings on each other from one broken heart to another.
I proposed to her in a forest, at a time when our lives were bathed in light, full of hope and excitement. She proposed to me in a storm, at a time of deep grief and loss. They are perfect bookends. This is who we are. She loves us, and we love her.
I bought my book with me on holiday and I’ve been developing it some more while my companions had afternoon naps. It’s at rough draft stage now, and comes in at around 23,000 words. I still have question marks over particular topics I’m not sure whether to include or exclude. There’s a big editing job to be done. But it’s taking shape! I plan to have it published this year.
I’m exploring the questions so infrequently touched on, or so often dogmatically responded to in the other books on Dissociative Identity Disorder I’ve read, as I find ways to communicate my own, diversity friendly, take on the topic:
What is multiplicity? What is a singular sense of self? What is consciousness? Where does identity come from? Where do parts come from? Where do voices come from? Where do dreams and psychoses come from? How does identity develop? Why don’t some people have one? What about people who lose theirs? What causes multiplicity? Is there such a thing as healthy multiplicity? What does multiplicity tell us about being human? What about being human is important to keep in mind when engaging with the topic of multiplicity?
Being an introductory guide this booklet will not answer all of these questions, but it will at least acknowledge their existence and how problematic it is to declare simple absolutes in this field. It will be as inclusive and useful as I can make it. Somewhere between the rigid dogma and the bewildering lack of certainty are paths, guides, tools, and principles that help people find their own way.
Grateful for friends on the other side of the world who send flowers.
Things are hard. We’re in crisis mode. Not much sleep is happening. I’m doing a lot of paperwork tracking down these debts. So far I’ve discovered we were billed for a bit over $400 we don’t owe, which is good news now that that’s been fixed, but there’s a kind of recurring error in which we’ve been over paid (not our fault) then had our rent increased and pay cut on the basis of this, then been asked to repay the over payment while the rent stays up and the pay stays cut. I’ve gone as far as I can with fixing this on phones and have to go and try to track down help in person next week.
Crisis mode means we had ice cream for dinner last night. It means we’re glad when we have good hours and we’re not surprised when they turn bad without warning. We make plans only a few hours ahead with any sense of certainty. We touch base every couple of hours, touch each other when in the same space frequently, fingers to fingers, hand to cheek. A hundred little ways of saying to each other – I’m still here, I love you, we’ll be okay.
We’re talking this weekend off and heading away from the city to hide out with a friend and our dog. I hope it helps, we sure could use a break. Friends being lovely are helping to keep us going.
(the child is this image is alive) Seriously proud of my people. No one in my feed tried this on today. I’m thankful for friends who are helping out, for sympathy cards, for tokens and gifts, for people sending in something heartfelt for the cremation of our Tamlorn, for those who offer something specific instead of asking me what I need, for people calling to say “I don’t know what to say but I’m here and I’m not avoiding you” so I can say “I don’t know what to say either and I’m sort of here and some days I may be avoiding you and other days I need you, sorry”.
Today was a little better, only 2 near hysterics. Rose bought some sinus meds on special for the meds box and I was tempted to take them just to shift the sense of being dead. I’m pretty sensitive to sinus meds, they’re a serious upper for me. That impulse didn’t feel good. Friends came round for dinner and played board games and we all got silly and ate chocolate biscuits and made each other laugh at dumb jokes and silly voices and my mood shifted anyway and I remembered I didn’t need the meds to do it, just hang on a bit and something will come along where I can breathe again for a bit.
Today Rose and I looked after a friend’s little girl. I’ve been watching the pain and the recoil in myself, looking for a moment when it doesn’t hurt too badly and the desire to connect is there. You have to look for such moments in times like this, to stop the aversion settling in. Like a wall that gets a brick higher every day, it gets harder over time. But if you push it too early it gets harder too. There’s a moment where its right and you have to look out for it and try to catch it when it happens. So today we went off and did baby wearing with a sweet little girl and got to smell her hair and wipe yoghurt off her hands and blow bubbles for her to chase on the lawn. And it hurt, but my arms weren’t empty and my heart wasn’t cold. And her Mum knows we’re hurting but she trusts us with her little one and that’s such a precious gift, such a generous act.
There has been so much bad news lately I can’t take any more in. I’m numbed, which is a relief. Today’s dose didn’t even raise a tear, just a sense of fatalism, a bowed head. We’ll get through it all, as long as I have her, lovely Rose, there’s still a future here, still hope. We’ll unpick the knots and fill in the pit traps and find a path through.
Only my hand aches, psychosomatic pain where the drip was badly placed. And my womb, cramping, pulling on ligaments, settling, taking my breath away in small bursts like labour pains.
I’m doing a lot of maths and admin, figuring our way through a couple of grand of debt we just found out about a couple of days ago. Stupid auto system errors like welfare changing the fortnight I get paid to match Rose’s and simply skipping payment of a week of rent. I’m making progress, it’s coming together. I can see where the errors are and I’m undoing the auto system and taking it all on myself so I can monitor it for the future. We’ll be okay. We’re not going to starve, we’ll be okay.
The funeral home sent a text to let me know Tamlorn is safe in their care, collected from the hospital. We can go ahead with the cremation any time. Doing it feels like willingly putting my hand in a fire. Not doing it feels like there’s no air left to breathe in the world. I guess at least burns heal in the end, hey.
I am shattered. 2 days of intense Posttraumatic Stress Disorder (PTSD) type distress. I remember this, it’s like being 14 again (when I was first diagnosed). I jump at every little sound or movement. I’m still bleeding, so much blood. It flashes in front my eyes, I see it pouring from my opened wrists for just a moment, a flicker of it pumping from the drip site in my hand. This isn’t just grief, it is trauma. I feel like I’ve staggered into another world, I’m walking wounded with the returned soldiers from a war we’re not supposed to talk about that everyone pretends isn’t happening. I feel like a ghost. I feel like I’m dead. I’m slipping sideways into that detached place where I’m not sure what the hell is wrong with me or why I can’t just cope better, where nothing matters and nothing counts.
I’m reading about women miscarrying at work and not being allowed to go home early, about partners putting on pressure to get over it, about women who were treated with sympathy after the first loss but the fourth is old news now and there’s just frustration that she needs time off again, about women being treated brutally by medical staff, denied pain relief, denied the treatment of their choice, suffering through multiple internal exams, strangers trying to pull the last debris from their womb by hand. I’m reading about women who 3 years on still have flashbacks, can’t bear to be too close to another pregnant woman, can’t see her children without pain. And no one talks about PTSD or trauma, because no one has talked to them about it. Because ‘nothing really happened, miscarriages happen all the time and most women just get on with things and don’t make such a fuss and an early loss isn’t really a baby and it’s best not to talk about, not to think about it, not to make a big deal out of it…’ So we don’t call it trauma and we don’t call it dissociation or flashbacks or triggers we just call it some hypersensitive women not coping…
I’m at the limit of coping. Small things push me into hysterical distress. I can’t go more than a few hours without feeling absolute desolation and sobbing. My voice cracks, my heart feels shattered, there’s this keening howl in my throat when I breathe in. I feel like I can’t breathe. I feel like I’m drowning. I hate reading other people’s experiences but I can’t bear to be alone in this either. Their pain, their crazy-making pain, their trauma and woundedness and hopefulness and grief and sense of being alone give mine context. This is just what it is, this is what it feels like. I get it now, and when I feel compassion for them or rage on their behalf, a little spills over for me too.
I crave sleep and rest, time in the garden, in the sunlight. Other people’s children hurt to see, their babies are a physical pain in my chest, an ache in my arms. But I love them also, I want to be near them, to follow them, if they look at me or smile I feel like my heart breaks but it is bitter-sweet, a flood of love and hope, looking over at world where the sun is shining. I don’t want to avoid them yet. Maybe after the next loss I will be in that place.
Every time I have to talk about the pregnancy in the past tense I feel a fresh wound.
I find I crave touch. I want to curl into a hug for 6 hours and not get up again until the world hurts less. I want to hide in a pillow fort, under blankets until the monsters go away.
I want to run down the streets, naked and screaming, blood streaked, and set fire to the houses of the complacent people who don’t think this is a big deal.
This morning I slept in a little then got up to go to college. I dressed and got ready then opened emails from welfare. They have made major mistakes with calculations and we owe them a lot of money. The same thing has happened with housing and we now owe a lot of backpay rent too. I called a friend in hysterics. They came round and cleaned the kitchen while I called debt departments and wrote up excel charts to try and figure out how this happened and how we are going to manage it. I spent all day in admin between bouts of hysteria. I’m exhausted to the point of trembling.
People are sending in messages of grief and support from our Invitation. I read them out loud in bed to Rose at night. We kiss goodnight through tears. I’m so glad we did this, so glad we chose to handle it this way. It’s deeply meaningful to feel we are honouring other dead babies, other families love and grief too. I have to go back to college soon, to work on artworks and all I want to do is memorialise grief. All I want to do is make trees that weep for dead babies, monuments that speak for silenced grief.
I’m trying to keep my life running. I’m scared of dropping out of college, of losing my business, my networks, my friends. I’m scared that when I climb out of this black hole and there won’t be anything left. The world is already moving on, sweeping me along, demanding attention. And I’m still here, bleeding. I’m still here.
Yesterday I woke up with a book in my brain and my heart light. I sat out in the backyard all day and worked on how to put this massive amount of information together in a useful way. After some lovely conversations with perceptive friends I have decided on a new structure for my book. I am constantly overwhelmed by my own inane desire to write a comprehensive treatise, a PhD thesis on the entire history and cross cultural perspectives on multiplicity, a summary of everything I’ve ever experienced, heard, read, encountered, or wondered. Obviously, for people who need information in a simple, manageable form, this would be about as useful as a free aardvark. For anyone in crisis, it would be about as useful as a free colony of rabid bats delivered to your living room. I know this, but it’s hard to let go of anyway.
So, I am not writing a book any more. I am writing a series of booklets. Smaller, simpler, more accessible, on a very specific topic, and as I publish them I can if I wish and there seems to be interest, group a relevant collection into a master volume. Otherwise tentatively called a book.
A friend kindly pointed out to me yesterday that it’s interesting that a book about multiplicity, written by a multiple, is constantly changing structure. Many of us are working on this and clearly we all have different ideas about structure. Obvious when you think about it! So far this new approach is working, partly because it makes room for a number of different approaches to be part of this series, distinct but connected, such as collections of diverse stories from other people, poems and artwork, workbooks with exercises and tools, crisis resources, and so on.
The first is going to be a summary of my understanding of the experience of Multiplicity – the inevitable “So what is it?” component of every talk I give and the necessary link in the opening paragraph of every blog post on the topic. (when I’m being conscientious) It seems like a good place to start. I’m happy to be working on it actively again.
Today was harder, I had a rough night and feel sick again with nausea and crampy pain. Rose and I took a drive through the hills, admiring the autumn leaves. We bought a few plants for the garden and had teary conversations. I’ve been reading the emails that people have been sending in to grieve with us out loud to her, and we are both so deeply touched by them and feel so glad to have made a small space for others to grieve their own losses too. Much love to all of you. xx
We have arranged for the hospital mortuary to hold onto what they call the ‘products’ of my post-miscarriage surgery. A company I really respect, The Natural Funeral Company, are going to collect our little Tamlorn on Monday and make arrangements for a cremation.
It might seem silly to fuss over a miscarriage, over a baby who was so little and died so early. But for some people, it’s exactly the right thing to be doing. It gives a home to aching loss, rituals of grief are how we anchor the senselessness and bewildering pain. This isn’t the right way, the only way, the best way. It’s simply what Rose and I are exploring, step by step, as we feel our way through our needs.
Because Tamlorn was so tiny, we have been advised that they usually cremate such little ones with paper so that you can be given enough ash to scatter or bury should you wish. We decided we would like to gather some things of meaning to cremate with Tamlorn. We are aware that as we have been so open about our pregnancy and loss, there are so many others who have grieved with us. We know that many of you have felt the old ache of losses of your own, babies and other loved ones. Grief calls to old wounds of grief.
So we wanted to invite you to email us something (skreece1@gmail.com) by this Thursday April 2nd, if you wish, to be included in the cremation. I will print it out and take it along to the cremation with our own letters and poems. You don’t need to feel that you have the ‘right’ thing to say. Words come easily for some and others grieve wordlessly. Here are some ideas about what you might like to send:
A photo of your favourite place
A picture you or your child has drawn
The names or dates of your own angel babies
A favourite poem
A quote you find meaningful
Song lyrics that speak to you
Lines from a text sacred to you such as the Bible, Koran, or Torah
A letter to someone you have loved and lost
A brief message such as ‘With love from the Smith Family’
If this seems uncomfortable or strange to you, please feel welcome to let it pass by. You don’t need to send anything, it’s not about ‘proving’ that you care. We simply wanted to acknowledge the outpouring of love and sadness and for those who wish to be part of this, extend an invitation. For those of you who have suffered loss such as infertility or miscarriage, especially if you have not felt safe or ready to share, or not had the opportunity to remember them in some way, you are welcome to be part of ours and to remember them with Tamlorn. You don’t need to have been close to us to be welcome to do this, we are opening this up to our whole community including those of you who read here or have just heard about our loss through friends. If you feel moved to participate, you are welcome.
If you would prefer instead, you are welcome to send a small token we will hang on the peach tree we will be planting for Tamlorn. Items can be sent to PO Box 165 Brompton South Australia 5007. If you send something you wish to be kept private, please let me know so I don’t share it with anyone other than Rose.
Rose’s nieces heard I am ‘sick’ and drew me some gifts. Another friend brought chocolates and took 2 loads of dirty washing home to clean. I got the great game Pandemic as an early birthday gift. I’m miserable, depressed, and in pain, but getting lots of love.
Yesterday was rough. The pre-meds made me pretty incredibly unwell, which I wasn’t expecting. The nurse in reception was nasty to Rose. The rest of the staff in the surgery were really kind to me, but I had to listen to them treating another woman really badly in recovery. I was crying and so badly wanted to go over there and give her a hug but couldn’t walk. I was glad to get home. The pain was pretty bad. I used a hot pack which helped a lot but I didn’t notice that I was burning my skin so I couldn’t use it again today. I had a brief but very upsetting argument with someone on facebook telling us to be positive and look forwards and treat Tamlorn’s death as a ‘trial pregnancy’. I’ve never actually shouted at anyone in caps online before. I’m depressed and exhausted. I feel like I’m in a desert, everything is dry and flat and empty and tasteless. My stomach is flatter and my breasts ache. My arms feel empty. My womb feels empty. I called the mortuary today and arranged for the ‘products’ to be kept safe so a funeral home can cremate them. I can’t get an appointment with my GP for a fortnight. It doesn’t feel like it matters anyway, nothing matters. Going through the motions and trying to be kind to those who are kind to me. I was mean to a friend who was only being kind and said sorry and gave her a hug but still feel bad. There’s burning anger sleeping just under the surface of all the grief and that familiar broken apathy I remember from the early days of PTSD, the wondering why something so ‘little’ can have such an impact. Life is restraint. Life is breathing through the next moment. Making the next phone call. Emptying the bin, feeding the cat, touching my love’s face, holding her hand.
That moment in bed, late at night, when all the lights are out and the house is silent and we lie facing each other, breathing out, breathing in, breathing each other’s air, heartbeats slowing down to sleep, the closest we get to death. And her skin feels like silk, feels like linen clean and hanging warm on a line in the sun, feels like a cat sleeping on warm clothes fresh from the dryer and I’m glad to hold her in my arms, silent and broken hearted because I can feel it, like the moment of joy from a gift, the recognition of kindness and love in other’s shared grief, the warmth from reaching out. For these very small moments the world makes sense, and they are precious moments.
I finished my metal sculpture for college yesterday. I used a mig welder for it. I’m not bad for a beginner. I love it, it’s going to live in my garden. It will shine in the sunlight and weep in the rain and chime in the wind.
Sarah K Reece 