Peer Work
Coming home
A conference is like a theatre production. A marathon. A community event. A childbirth. Moving house.
Rush and noise and excitement and energy and frustration and new people and hard work. Adrenaline and boredom and getting lost.
Stray dogs, gas leaks, brilliant observations, clasping hands with strangers, insomnia, homesickness. Sensory overload. The musky smell of strangers, the way his coat feels against my ear, the speckles in her eyes and how she hides her face in her hands in embarrassment when someone compliments her about them.
Writing brief descriptions of people on their business cards so I might remember who belongs to which when I get home. Worrying they might see them and feel hurt by being reduced to a brief reference “black hair, laughs a lot”, “husband and wife team, he’s a sculptor”.
Facial blindness making it difficult to find the speaker in the crowd afterwards to say hello or thankyou or I liked this point or that idea. Anxiety that I’ll shake the wrong hand and launch into an idea from the talk leaving a trail of baffled non-speakers wondering who this strange person was and what they were taking about.
On the train home now. Bus, train, train, bus, flight, friend in a car. I yearn for home. I want to see my loves, smell familiar smells.
I’m tired. My eyes are hot and heavy, my voice husky. I feel content. A completed thing. It’s done and was worth all the effort. I’m bringing gifts home with me, new knowledge, new ideas, new connections. New friends, new opportunities, new networks. Ideas challenged, or deepened, or spoken of in a different language with its own nuances and perspective. Great richness for me, and great richness I hope for my networks, my family, my arts practice, my communities.
Thankyou for all those who have supported me to get here, and once I was here, and getting home again, with food, transport, donations towards the costs, conversation, hugs, kindness, and caring for Rose back home who had been extremely sick with bronchitis and asthma. Your kindness and faith in me is so appreciated. I hope I have represented you well. I am not alone but part of a tribe, many tribes.
Poem – At the end
Day one of the ISPS conference on psychosis is over. I’ve wept, I’ve met many new people, I’ve made friends, shared ideas, had paradigms challenged, found support, listened, learned, talked, shone, and soaked up all within reach of me. I’m back in bed now, dazed, sleep deprived, and changing gear. Poetry is a good place to come back to when you’re feeling skinless, so:
We have blazed brightly and now
At the end, alone in the dim
Comes the haunting fragility – the nakedness
Away from the theatre, from the pagentry
The balloons deflate
Not because it is not real
But because life cannot always be the lights and noise,
The parade of new fascinating people,
The urgent connections, sudden introductions, immediate revelations…
Thankfully.
I’ve lost count of how many people I’ve told today that I’m sometimes psychotic or always multiple.
Or shared unfinished thoughts with, not polished and perfected but still forming
How many times I’ve stood tall in my boots, grasped firmly my right to be here, to have a voice, an opinion, an experience, a right also to hear, to be part of these precious conversations, to drink from the cup of privileged knowledge.
To be grateful and enlightened.
And now?
I’ve gorged on food too rich for my spirit.
At some point even the largest, most gluttonous python must go into a cave,
Sleep in the dark and digest.
Now my boots lie empty beside the bed. I’m alone and naked in the darkness
Shedding all the roles like skin
I’m no one again, and glad for it.
I leave the world to Atlas and go to bed.
Tomorrow the sun will rise without me
The world will be beautiful and horrific and I’ll play no part in either, for just a few hours.
Shivering in the cold,
My soul slowly wanders back into my body,
Tremulous and tender, silent and gentle
Like a small creature, I feel it curling round,
Patting down the ground of me with tiny paws,
Making a bed of me to sleep.
How blessed I am to have such a soul
To lie here trembling with it
Listening to its silent, bewildered language
Watching the dreams come in, like fog feeling its way blindly over the bay.
I’m making a handmade art book
I am part way through a hand made artist’s book about losing Tamlorn. This is the final project for a semester long class called Critical Visual Thinking. I’ve chosen a combination of sewing, watercolours, and bead embroidery for the pages. I have two more to finish then tomorrow I will start the process of binding it. It’s exquisitely beautiful and I’ve loved every painstaking hour I’ve spent on it. Here’s a little preview:
Everything sings to me
I’m in the zone, powering through my mammoth workload with fierce joy. I’m currently hand sewing an art book about grieving unborn children.
I watched Mad Max 4 yesterday in 3D at the cinemas… I’m so broke but I think I’m going back to see it again. It was stunning. The cinematography, direction, visuals, and sound were superb… visual poetry with an impressive philosophy and psychology. I was enchanted. I felt something click in my head, one of my frameworks about life gently get the last piece needed. Something closed over and I exhaled with a sense of peace. The world makes sense. It’s not okay, it’s not all answered, I haven’t found the truth or understood every question, but a sense of total disconnection and bewilderment that has been with me all my life suddenly healed over.
I’m flying.
My midnight and my noonday are close enough to spark life between them. The sublime and the domestic burst into each other with abundance. I’ve bridged a gap between the internal and external.
It’s like I can run after spending my whole life dragging a ball and chain behind me. I feel so alive and so free. My mind is so clear. Everything sings to me, everything speaks to me. I turn the radio up loud and sing in the car when I’m driving. I can feel the touch on my skin when I think of my favourite scenes from Mad Max, but it’s not psychotic or deranged. The stars sing to me, my bones sing to me. The world is full of life and it makes sense to me. Everything speaks in its own language and I’m spinning with the whirl of stars, grasping life to me with passion. It’s not a mind puzzle solved in disconnection, it’s felt in the body, it’s experienced in the soul. I breathe and the world breathes into me, through me. I’m not disconnected any more, not set apart, not broken by the contradictions. I feel like I’ve swallowed the planet, my heart finally big enough.
There’s no glass. No railway tracks. No rules I can’t break, should I choose to. I am apart from it all, all the fences and the traps. I am a little bag of skin, sewn over dreams, painfully fragile, singing with life. I’ve drunk many bitter cups to taste this sweetness. I’ve loved and been broken by love. I’ve faced the things that hunted me in the night, made some peace with my ghosts.
My voice, my lovely anguished voice, she is transformed. She infuses with me something beautiful that is not voice, that is a language without words. The void is outside me, not within. The shadows are populated, my ignorance stretches before me like a vast unknown land full of terror and possibility. We are Sarah. I know my own name, I know who I am. I have seen through to the bones of life, I have seen the joke and I can’t help but laugh. Agony and beauty, spun together. The anguish is not gone. I am not safe. I am not safe and yet there is this freedom, this song in me. The world it screams and it sings and I can hear it all.
Bearing Witness to Pain and Suicide
Between Rose and myself, today has involved touching base with or trying to arrange supports for 3 suicidal people. We’re home now, the doors are locked, the phones are off the hook, and we’re sharing dinner. Rose has cooked using these beautiful little tomatoes from our garden. Someone stole our trowel and I got paid today so I bought her another one. It’s become a project we love working on together, a little hub of abundance in the middle of our busy, at times tiring, lives.
We both know what it’s like to be in that place, how dark, lonely, and desperate it feels. Sometimes there’s concrete things we can do to help, linking people to resources, taking people to hospital, going around and giving them a hug. Sometimes there’s so little we can do except bear witness. To find some way to say “I see you. I hear your pain. If you should die tonight you will be mourned.” I told a friend today that working in mental health with a system that doesn’t support people in ongoing crisis, at times I feel like I am standing at the gates to Auschwitz, helpless to intervene, marking a tally of those who enter and will never return to us. Sometimes counting the dead is all I can do, and it kills me inside. I’ve written about bearing witness before:
These are people, who get thrown out of hospital for being a nuisance, who get turned away from services for being too sick, too suicidal, too much hard work. These are people who are dogged by the impact of chronic trauma and abuse, who fight so hard to stay alive through so many dark nights and simply run out of fight, people who want to live but can’t bear the pain any more and who sometimes want to die, whose ambivalence is misinterpreted as manipulation, whose suffering is disregarded as attention seeking. They are real people. Under the labels like Borderline Personality Disorder, Dissociative Identity Disorder, under the other labels used (mostly) when they’re not in the room – asshole, stupid, FITH ‘fucked in the head’, bitch, waste of space, they are humans. They are dying. And if they die, they should not die unloved. If they die, we shall mourn them. If there truly is no hope (a common reason services withdraw help, because they’re ‘probably just going to die anyway’) we should not throw them out of services but move them to compassionate palliative care services. That’s what a caring society does for people who are dying.
I’ve seen this too often. I’ve had to contact media to force a hospital to admit a friend who had been left, untreated, without food or water, in the ER for ten hours with her arms lacerated by self harm. I’ve had to coax a friend into drinking activated charcoal to absorb the poisons that were killing them from a suicide attempt, because they had been marked a chronic complainer with behavioural issues and the entire state public mental health system had been closed to them – even sympathetic doctors could no longer admit them. I’ve myself turned up to ACIS, our crisis support service, homeless and acutely suicidal and been turned away because “we don’t treat people with DID very well, you’ve got a better chance of surviving on your own”… and that doctor was right. I did. I’ve supported people to increase their level of dissociation to survive the night when distraught and suicidal and unable to access any kind of support. I’ve visited people dying of self inflicted harm in hospital. I’ve sat on their bed and held their hand and shared ice cream with them. If I had a dollar for every email from a person with multiplicity who was confused, suffering, lost, and being more harmed than helped by the mental health services, I wouldn’t have a lot of debts left. I’ve lost friends to suicide, and supported others grieving after losing someone they loved to it, and shared poetry about it, and exhibited artwork in exhibitions to raise awareness. Since I was first suicidal at 10, it’s been part of my life.
So today – please bear witness with me. I’m not breaking any confidentiality, I’m not exposing anyone. I’m telling you that people like me stand at the gates and we tally the dead. Everyone we lose is a loss to all of us. A book too short, tragically ended, a life cut off. This is not the way people are supposed to leave us. Each loss makes the world a little darker, the night a little colder. We must find ways, together, to see people in pain. To bear witness to their lives. To sit with their pain. To mourn and to scream and to find ways to live. To burn brightly. To bring warmth.
If you are feeling suicidal yourself, or care for someone who is, you might helpful:
One happy artist
Took this photo in the bathroom at college today when I realised I looked like a green haired Marge Simpson… I’ve been working on a lathe and other equipment where dangling hair could get me scalped, so I put my dreads up them covered them with this gorgeous yak wool beanie from Nepal. When I put my dreads right up on the top of my head like this, I’ve got quite a bit of height going on!
I’m into the last 3 weeks of this semester. I have 2 essays, 3 artworks, and 3 journals due. It’s packed in and needing my total attention. I’m flourishing. I’m hitting my stride and finally finding my feet. I’m also rapidly recovering from my sinus infection, which is fantastic. I was told, after the surgery, I’d still get them but likely get over them fast, (previously they went bacterial then crashed my immune system so I got everything else too) and that’s holding true so far… Fingers crossed it still works for me over winter.
Working hard and learning many new skills. Can’t wait to show you, I’ve got a handmade art book, a wooden doll, and a tactile rain stick in development. I’m so content to be developing as an artist. I’m home, I’m home, I’m home. I can be what I really am and still make a difference in the world, still be an ethical and responsible citizen, using art as a language to say the things I want to say, using it to keep me sane and keep me mad in ways that don’t destroy my life. Keep that spark alive.
I wanted to go out to the post card fund-raiser for NePal tonight after college but my mind and body were saying ‘home’. So home I came. I’ve cut the dead roses back, done some weeding in the soft wet soil, planted out a rose I gave to Rose for Mothers Day, put out the bins, and cleaned something pink off the car. (did someone throw a drink over it? No idea) Rose and I are cooking pasta and waffles for dinner together and then cleaning the kitchen.
There’s a purr of happy contentedness in my chest. Is this what learning your own rhythms feels like? Tuning into the language of body and brain? It’s the most wonderful thing. It feels like I’ve finally learned how to follow the steps of a dance I’ve been doing wrong all my life and now it just… Flows.
Broken and Loved
Precious, lovely Rose is going through a rough time. She’s been tangled in a bad depression since Tamlorn died. There’s some days that are better than others, but the bad days are very hard right now. If could, I’d sweep her up and squeeze all the darkness out of her, the deep pain, the dread, the despair, the exhaustion and fear that maybe life will never feel better again. It’s wonderful that I’m in a good place right now, because both of us being in misery is very hard. But it has its own pain for her too, a fear of holding me back, a sense of failing. Complicated grief, with deep sense of brokenness.
I can’t make it better, but I can make a space for her where she doesn’t need to hold up the sky or live up to expectations, or be worthy. Together, we can make our home a refuge.
Yesterday was a bad day. I wanted to give her some token she could carry with her, through all the dark hours. So I made this memory locket. I gave her one last year with little crystals in it to represent her family – her, and me, and 6 for the little babies who have died unborn. I broke it accidentally when trying to place a little charm in it that didn’t fit. So for her birthday this year, I replaced it with a new shiny one. I was going throw the old one away but her talk of brokenness made me see the possibilities in it. For those of you who aren’t familiar with memory lockets, they have a little window on both sides, giving them a front and reverse side. I used water colours and ink to create this little artwork, you can flip it back and forward in your hand to see each side.
She loved it. She doesn’t have to believe it. It doesn’t take away the pain. But it’s something. There’s a kind of peace there.
Moving between worlds
The days start pretty well, working from home.
I’m somewhere between hitting my stride, mad obsession, and betting kicked in the head by another sinus infection. Last week I worked all day every day on business and networks – which are growing at a phenomenal rate as all kinds of things are clicking into place about marketing, communication, and finding a language for what it is I do. Changing gears or taking time off is somewhere between very difficult and completely impossible. I had my first migraine in years the other day and had to stop everything and go lie down in a dark room. For me these have only ever been drug allergies… was it a food allergy? Driving home through incredibly bright afternoon light in the hills (if you haven’t experienced Australian evening light when the sky is clear, try driving with a industrial spotlight in your face)… or trying to stop the cascade of information in my head? I don’t know. If it happens again I’ll know more, but one incident is not a pattern.
I am drafting policy documents for the networks and not for profit. I don’t mean to be, but I can’t stop it. Things that never made sense to me are making sense, and in this clarity everything I’ve ever thought, read, or experienced, comes rushing into view… a new perspective. I’m finally learning a new language and everything is translating itself into and out of it. Art and mental health are sparking each other in a continuous loop in my mind. The tip of my index finger has now become permanently numb from writing.
I need to get college homework done. I have 3 artworks and 2 essays due soon, and work do do on 3 journals. It’s almost impossible to make time for it. But I will. Last night I set myself the task – no business or networking work at all until after 5pm today. At all. Even returning a phone call or an email. I don’t have the control to just do one thing, so it needs to be a closed door. Panic and frustration screamed inside me. So then I did whatever I had to until the screaming quieted. I set up my work table. I cleared away all network and business paraphinalia. I checked my do list and updated my post it notes so I wouldn’t forget anything important – and didn’t have to waste mental energy remembering it. I got out my papers and sewing machine and library books and notes and journal and all the inspiration and trappings of one of the art projects I need to work on. I could feel the screaming settle inside and my mind change focus, start to pick up the threads of this project with keenness and interest, start to knaw at the problems and muse about the possibilities. I went to bed with the art project brewing and my mind mollified, like taking a toy that needs washing off a child and giving them a different, but still interesting toy to investigate instead.
Today I’m up. I’ve slept, I’m rested. My sinuses are horrible but I still have half a box of tissues so I don’t need to go anywhere. The lounge is set for art. I’ve filled two buckets with weeds and rose trimmings from the garden – starting by getting my hands in soil. I have water to drink and Radiohead playing. This is how I cross the threshold and shift my focus – I change the environment. I’ve always known this but not known what I was doing. The artists in my system have turned up, like wolves sniffing the air. Something for them. The papers and inks call to my hands. A language of their own.
Out in the yard, I’ve set the sprinklers as the garden was dry. It’s easy to miss that during the cold months, but here in South Australia just because it’s cold doesn’t mean rain has fallen. You need to walk in the garden to notice all the little signs of stress in the plants that ask for water. And I think to myself – that’s another language, of a kind. All these different languages the world speaks. All these different worlds, nested alongside each other. And here’s me, changing shape, colour, name, and mother tongue. Figuring out how to open the doors and cross the thresholds and move between the worlds.
In the grey light, the water drops hang silver on the plants. The garden is strewn with pearls.
Crisis Mode & Being under Pressure
I had a lovely lunch with a wonderful friend today and we were musing about my recent post Self Care and a Myth of Crisis Mode. She made an excellent point I wanted to share, which was that for her, crisis mode was being triggered, not by trauma but by being the ‘bottom line’ in a number of areas of her life at the moment. This really resonated with me and fit the pattern of a number of people I know who struggle with constantly being in crisis mode and all the distress around that experience.
Being the ‘bottom line’ is being in a place where you must function because there is no one else to pass important tasks off to or take on the role you are doing. It can be a part of trauma and crisis, for example a soldier on active duty must function and do his job well. But it can also be a part of everyday life in ways that aren’t so much about trauma as they are about being under pressure. So, having tight schedules and a demanding job where you can’t easily be replaced can put you under a lot of strain. Being a parent with children who are sick or have high needs in some way is exhausting because you are always the bottom line, and even if they are being cared for by someone else for a night, you know that if the wheels really fall off the train, you are going to get a call at 3am and you had better be able to turn up and fix it all again. There’s a kind of chilling reality of adult life going on here, that is possibly more about our fractured social networks and isolation than it is about being adult. It’s the culture we live in where each family is responsible for it’s own and asking for help outside of that family can be extremely challenging – or getting it, for that matter. I remember a few years back when I was single, I was very sick and desperately needed some support – having a friend who would offer to come over and fill a script for me, or another who kindly drove me to the doctor, or another who came down at short notice late at night to sit with me so I didn’t have to let a stranger into my house by myself when the locum called… such kindnesses were the difference between a challenging situation and a desperate one. We all need the networks and capacity to drop our bundle from time to time. In fact, know that we can drop it and things will still be okay is a big part of what helps us be more resilient! It’s a kind of foundation upon which we can stand and face the world and fulfill our responsibilities.
So, being the bottom line is about pressure. Some pressure is fine, it’s manageable, even helpful. Too much is destructive. Where that line is, is different for each of us. And some of us put ourselves under a lot more pressure than the situation warrants. I’ve talked with lovely, hyper-responsible people who are acutely suicidal and at extremely high risk who simply will not cancel something they are booked in to, because they must keep their word, must do what they’ve said they will do, and because they think they are basically a lazy or overly dramatic child who needs to be pushed into doing the right thing and not allowed time off whenever they feel like it.
Oh boy, is this me. Rose and I have had some memorable show downs where I’ve been acutely unwell – physically, or at extremely high risk emotionally and I’m still trying to get off to college or keep a work commitment of some kind – even when I’m so stressed about it I’m shaking and hysterical! In fact, the more stressed out I am, the more likely I am to not think clearly and default to my preferred stance of “it’s not that bad, I’m just a sook, and I must do whatever I was scheduled to do”. Rose, who is at that point thinking considerably clearer than I am, is the one who both demands that I take better care of myself, and gives me permission to.
I’ve been a little like an exhausted horse who’s rider is flogging it with a whip to keep it moving, except I’m both the horse and the rider in one. The more the horse collapses and staggers and foams at the mouth, the more the rider beats it and drives it on. Over time the rider becomes absolutely convinced that the only way the horse will ever be kept moving is with this driven brutality, because whenever they try stopping the horse collapses and doesn’t move at all. It takes some serious convincing to get the rider to understand that the horse wants to run, and that if they tried caring for it instead, letting it rest and feed and move at a pace it can handle, it will carry them joyously and loyally. This is the driveness I’ve described so often on this blog, and it costs me a great deal, not to mention sucks a lot of the joy out of life.
We don’t generally come up with these ideas by ourselves. Most of us put ourselves under pressure, are brutal about withholding things we need, and suspicious that we are actually just weak or lazy because at some time, in some way, someone has treated us this way, or treated themselves this way and modeled this for us. We internalise this kind of approach whether it was parenting, or teaching, or an impossible standard to live up to, or high expectations of our capacity, or low empathy for vulnerability, or the idea that austerity and self denial makes us strong. These are the voices we hear in our head, they are the inner voice we talk to ourselves with. If they were harsh, we are harsh. If they had no grace, we give ourselves none.
Sometimes it was overt trauma, situations in which we simply had to push past our limits to survive, had to endure the unendurable, face the horrific, know things we absolutely could not bear knowing. And somewhere in that we lost trust in ourselves and started to use pressure and contempt to motivate ourselves and now we are too afraid to let go of that tool even when it’s destroying us. I’ve written more about self hate as a form of motivation in
When I put myself – or others put me, under the intense pressure that says I must function no matter what it costs me, this sets me into crisis mode and makes self care impossible. If I try to do self care from within crisis mode, I do it as a task that I must perform – something to keep my shrink happy or prove to my doctor that I am a responsible patient. I am unable to actually benefit from it. I schedule in fun and try to have it and feel totally detached and find myself looking sideways at myself to see if I’m having fun yet. I sit in a hot bath and it’s not a luxurious break from my day, it’s just a tub of warm water. My body is still rigid with anxiety and becomes more so as I start to wonder why I’m not relaxing properly and why I’m even failing at this simple task. Self care become exhausting and depressing, one more thing I should be doing to keep people off my back and prove I’m being a responsible person. I’ve written more about this in
Self care that breaks me out of crisis mode feels completely different. It is felt. The body calms and unknots, not because I make it but because it is genuinely relaxing. My mind calms, the anxious tension eases, the self hate settles. I don’t have to do anything, accomplish anything, prove anything. I’m not under attack, I don’t need to prepare a defense, and I’m not under pressure to perform. I can just be, and follow my own impulses. In this place, it’s easy to do self care. It’s easy to tell what would be nice, there’s a strong pull towards a bath or the beach or a Blackadder and popcorn night, and none of it feels like work or something I can fail at.
I’ve noticed certain trends such as – everytime I’ve fallen into a sick exhausted heap and had to step back from all my passions and projects and just BE for a little while, I’ve suddenly radically improved. Everytime I’ve been given permission to be human and vulnerable and have limits and needs, I’ve suddenly found things easier. The more I’ve been coaxed and cajoled (and modelled) to take care of myself instead of pushing myself way past my limits all the time, the better I’ve functioned. Walking out of things that stress me like a really triggering talk or film took immense courage the first few times and now I can do it easily. Having to cancel on someone still eats me up inside but with coaxing from Rose I can do it when I have to. Just being given permission to stay home when I’m having a meltdown oddly enough means that I often suddenly feel up to managing the trip. Feeling past my limits and trapped in a situation where I must function is the exact set up that means I’m least able to. Chronic pressure and long term crisis mode are killers.
A shift has taken place inside me. The better I look after myself, the more I stay out of crisis mode, and the less pressure I put myself under, the more I can actually do. I was a high achieving, intelligent child of whom great things were expected. I was often able to accomplish them but at huge personal cost. Learning that I get to stop when it’s too much has taken me a lifetime because that’s not how things worked when I was a kid. I was often past my limits, exhausted and suicidal and yet things like school remained a brutal, inescapable reality I simply had to endure. Permission to be human and take care of myself have been difficult to learn. I’ve had to start by finding other people who do this themselves, and who could help me do it without putting me under the intense and impossible stress of forcing me to do it before I was ready. It’s taken courage to explore self care when I was convinced that I did not deserve it and that it would make me weak. But the place it’s taking me to is that my inner horse runs free; it runs, not because it must, but because it loves to, from a place of heart singing joy.
Exuberance: passion, mania, and self hypnosis
Things are still wild here. Poor lovely Rose was up half the night vomiting bile. We think she might have food poisoning, and we’re going off to see her doctor soon. Around 4am she finally stopped long enough to keep an anti-emetic down, thankfully, and has only vomited a couple of times this morning.
I’m sleep deprived but still good. There’s been a fair bit of plans going astray and wheels falling off and last minute shocks lately, but after the inital feeling awful and hopeless I seem to be bouncing back incredibly quickly. My mind is still clear, and still going a million miles an hour. I actually have a callous on my fingers and a permanent numb patch from writing so much lately. I can barely keep up, ideas are flowing through me like a constant sleet of inspiration. I’m having to work thoughtfully to find ways to calm my mind enough to focus on driving – I’m constantly having to pull over to write things down – and sleeping. Last night I was writing after waking up with Rose sick – she went back to sleep but my brain woke up and began to spit an entire theoretical framework for mental health service provision at me. I wrote and then put the pen down and turned off the light and after 10 minutes gave up and turned the light back on to quickly capture the next few ideas spilling into my brain, then turning it off again. I did that for about an hour as the pace slowed down. Finally there was only a trickle, and then a pause. I had the sense that in that pause I could tip the balance – in one direction I would go back into intense idea generation. In the other, I could close the valve gently and let all the ideas spin and burn safely in my subconscious. I gently learned in the direction of the closed valve and instructed my mind “No more for now, we must sleep and rest, let all the ideas keep going in my subconscious, but do not allow any more to come up into consciousness”. I also used an energy visualisation. I saw and felt my energy as light and buzzing and whirling, currently in my brain. I gently moved it down from my brain, into my body. From there, I moved it out of my body, into the room, changing from a whirling ball and into a peaceful, illuminating soft light, the gentle touch of awareness. I immediately felt my mind and body settle and calm. I felt a sense of connection with my surroundings, a kind of mindfulness that was highly aware without being alert. A kind of resting state that was still aware – possibly the same state hypnotists help people access. And then sleep came deeply and peacefully and I slept in through the morning to catch up.
Today it’s back. I cannot keep up with the ideas. Inspiration is everywhere. There are connections in everything. Profound realisations happen every hour. I’m constantly writing. I’m a prolific writer and blogger anyway, but I’ve never experienced this level of output before. It’s phenomenal. It’s still – to use Kay Redfield Jamison’s delineations in her book Exuberance: The Passion for Life in the territory of Exuberance rather than mania, but it’s pretty mind blowing. A short quote that sums a lot up from this fantastic book:
If exuberance is the champaign of life, then mania is its’ crack cocaine.
I have astonishing resilience at the moment – there have been some major setbacks this month and they still impact me and knock me over – but I bounce back like I never have before, within hours, strong and calm and ready to deal with it. My fibro is lesser than it’s been in many years – in fact I don’t think I’ve been this physically well since I was about 9 years old. It might not last, but it doesn’t have to. I’ll use the time I have.
Everything I’m learning about theory and history in my Visual Arts Degree is having profound implications for my mental health work. I’m learning more about the history of psychiatry and the developments of the science/humanity split in our disciplines than I ever did in my time trying to do my psychology degree. It’s so pertinent and explains so much about our current models, how we’ve developed them, the context we were responding to, and the losses that have happened along the way. I feel absolutely vindicated in my school time stress at being required to choose a stream when actually I love both science and humanities. They have so much to offer each other and so much to learn from each other, especially in a field like mental health that needs input from both to function – the rigor and research metholodoly of the sciences, their morally neutral assessments of ‘madness’ and hope for restoring health, and the human skills of connection, relationship, rapport, communication, and bringing hope. For the first time I firmly believe that I have made the right call to train in the arts while working in mental health. I am learning unique skills and insights that are essential to my work in mental health – which is so surprising and unexpected! I do not want to be a psychologist or a counsellor or a psychiatrist or a social worker – not because I do not value those disciplines but because that is not how I want to practice. I want to be a peer, a communicator, a community hub person that is friends with people and helps to connect them with the resources they need. I want to collaborate with the mental health disciplines and form alliances with them and work along side them, but as who I am now and the roles I naturally play best – artist, entrepreneur, activist. We need people like me in this field, we just hadn’t realised it before. So I will work as a freelancer and build the role around me and my skills – just as many others have in the past. We will bring new voices to the conversation and champion inclusion, community, and hope.
And I will do more figuring out how manage this exuberance, to shepherd it wisely, and to calm my brain and sleep.
Exciting Network developments!
I’ve been working hard on my Community Networks as usual – for all the very exciting details please see these Newsletters! 😀
Self Care & a myth of Crisis Mode
There’s general agreement about self care, it’s good stuff, we should do it and so on. There’s a lot of talk about meditation and exercise and bubble baths in ways that bewilder the more adventurous of us, nauseate the more masculine, and create yearning for those who actually like these things!
If only it was that simple. For some people it is – figure out what you need and do it. For others, it goes more like figure out what you need, try to do it. Run into walls and blocks and internal obstacles. Fight them like crazy and manage to it only sometimes. Kind of hate yourself a lot and feel ashamed and confused. Get stuck. And hate everyone who tells you to ‘take care’.
Yeah, been there. Lots! Sometimes we have to spend a bit of time unpicking the things that make self care impossible. There’s many, many reasons. One of them is when we are crisis mode, self care feels wrong, even dangerous. Crisis mode is a state of high alertness and changed priorities that we use to manage extremely volatile challenging and threatening situations. It’s important and essential. We all do it and we all need to do it. It’s triggered by a sense of threat. That’s important to understand becuase often that threat is in response to an external situation of violence, homelessness, or some less tangible risk of loss such as widespread retrenchment in your workplace. Other times it’s triggered by an internal threat, or a memory of threat, or by unworkable core beliefs such as “I must be better than everyone at everything or I’m not worth anything” that make threat an inevitable, permanent part of social interactions.
Crisis mode is the thing that shifts our brain from higher functions and long term planning to immediate threat response. It’s primal. It’s the thing that makes us run toward a screaming child, react to a dog attack, drop our toothbrush and put out the fire in the kitchen. It’s flight or flight stuff and it uses our brains in a very different way. It’s triggered by the strong emotional sense of threat and fear. When people suffer some kinds of brain damage or are heavily dosed on tranquillisers or mood dampening drugs, they can be missing this response completely and struggle to react appropriately to threat. There is a sad case study of a man who continued to brush his teeth while his kitchen burned down, because this kind of brain damage was present. He heard the smoke alarms screaming and intended to respond, but without the emotional reaction kicking him into crisis mode, he stayed with his current plans for the evening which involved brushing his teeth and so on, and merely tacked ‘do something about the kitchen fire’ to the end of his mental to do list. Crisis mode dumps our previous to do list and rapidly reorganises with with a focus on threat and survival. It’s brilliant and essential.
However, like any system, things can go wrong or get stuck. Some people don’t have crisis mode activate at all when they need it. Some find it kicks in too often or for the wrong kinds of crises such as interpersonal conflicts or existential threats where a loading of adrenaline and a hyper focus on the threat is exactly the opposite of what would be helpful. There can also be issues with staying in crisis mode too long. There’s complex biology behind this about the sympathetic and parasympathetic nervous system and long term cortisol levels and adrenal fatigue and so on. But the bit I want to focus on is the clash between crisis mode and self care.
When things are very hard in a longer term way than short urgent crises such as a car accident – whether you’re homeless, suicidal, or facing horrific debts, you can get stuck in crisis mode long term. The self care side of things is actually about getting yourself out of crisis mode. It’s about relaxing, taking intense focus off the threat, calming down brain and body, and getting out of that flight/fight/freeze mode. The aim is to reduce the intense emotions that are triggering the crisis, make space for the ones that need to happen post the crises – so where terror triggers crisis, a wash out of grief, sadness, and fear following a crisis can be an essential part of moving out of crisis mode where such feelings are numbed in order to function. However, in longer term crises we can hang on to our crisis mode because we feel we need it. We can’t rest yet, stop yet, relax yet, feel things yet because it’s still happening!
Worse, when we try to, we feel weak and vulnerable and emotional. We may even radically decrease our functioning and go from being able to keep up the ‘front’ and hold up work and study and getting dressed in the morning – to falling in a heap and not being able to get out of bed or stop crying. This is a natural result of making a safe space in our lives, all the feelings we’ve pushed aside turn up. If we’ve pushed very BIG feelings aside, or been pushing them aside for a long time, we will probably feel very big feelings at this point. So we, and the people around us, get scared. We think we’re getting sick, losing control, going crazy, or falling apart. And we can’t afford to fall apart!! The crisis is still happening! So our sense of terror and threat kicks back in and we go back into crisis mode, that urgent, hypervigilent, holding-on-with-white-knuckles approach to life. And we feel incredibly strained, but at least we’re ‘strong’ again. If we can just fix the problem, then we’ll go and self care!
There’s the myth – it’s better, safer, more efficient to stay in crisis mode than to go into and out of it all the time. Self care can wait until the crises are all over.
- Emotional Flooding – learn more about ‘feeling’ weak and how suppression of strong feelings and containment of them are different
- Carpe Diem – exploring the way I look strong in crisis and look weak when it passes but they’re the same process at different parts of the response to life events
Welcome to major issues. This is a poor strategy for managing crises. It feels right and makes sense intuitively, but it destroys us. Our bodies and brains are not designed to be in crisis mode long term. (Not that brain and body are truly separate, but this still how people think of them) When we put them in this mode for a long time, they change. This is adaptive. Basically our body and brain go – well, I guess this person is unlucky. They are living in a really dangerous time and place. We will adapt and help them to have the kind of brain and body that can survive in a really high risk environment. We will make them hypersensitive to any hint of threat. We will give them a hair trigger to kick into adrenaline. We will change their cortisol levels to crisis mode ones all the time. We will wake them up if the tiniest noise happens. We will help them problem solve the bad things by making them dream about them over and over until they figure out how to manage them. We will keep them obsessively focused on the problem so they can fix it. We will help them be the highly sensitive, alert, focused, reactive person they clearly need to be in order to keep them alive.
Our body changes too. Our muscles stay chronically tense in what is known as ‘guarding’ where they literally try to armour us against physical harm. Chronic muscle tension has implications for blood flow, immune function, and lymphatic drainage. It is linked to chronic pain caused by chronic tension and issues with poor lactic acid drainage following exertion. We feel both wired and exhausted and in pain and numb. Our senses may become heightened as they can when a sense is lost. Like a blind person noticing tiny noises, we are deeply attuned to anything that suggests danger, noticing smells and sounds we’ve never been able to pick up before. This may destroy our usual levels of helpful dissociation, so we can no longer tune things out. People crunching foods now drives us up the wall. We can’t listen to a conversation with the radio in the background. We can’t sleep if the neighbours check their mail.
We have to let go of the idea that long term crisis mode is helpful. This is the ‘being too strong all the time’ that sets us up for chronic health and emotional problems and sometimes a huge breakdown when it suddenly fails. No one can be strong all the time without rewiring their body and brain to believe that their life is under constant threat. Those re-wirings are what we call Posttraumatic Stress Disorder or various other dissociative, psychotic, and anxiety disorders. (psychosis and crisis a topic for a different post) For people in constant danger, they are useful. For people who are under threat but not the kind that can be solved by this approach, or who are actually in intermittent crises but try to stay in crisis mode and be strong all the time just in case, these changes are extremely destructive and distressing. Even noticing that these changes are happening can make some people kick into crisis mode as they fight them and try harder to be ‘strong’. This sets off a spiral that can result in tragedy and severe impairment. Accepting that our brains and bodies are wired to survive and that we are carried along by that process, able to influence and direct it but not solely in control of it – and for very good reasons, is critical. We can’t control it because the whole point of crisis mode is to hijack our brain and body without us having to think about it and straight away convert us into crisis mode so we have the best chance of surviving. It is extremely rapid and we don’t have to try and think it into happening, or we’d all be tiger food.
- Introducing Posttraumatic Stress Disorder – see what these changes look like: permanent crisis mode is not fun
So, if survival and functioning isn’t about being strong all the time, what is it about? There are lessons to be learned here from those who work and manage extreme environments such as the Arctic. The best model of survival is not a constant state, but a cycle. When a crisis is right now happening, respond to it. Drop everything and do what must be done! When a crisis is not happening right now, right this very moment, this second, that we can do something urgent about, then use self care and grounding to get yourself out of crisis mode as quickly as possible. It is the turbo boost on your car, you should not use it constantly. It is the cheetah’s top speed, you can only hit it once a day before you wear out or change how you function. If you don’t want the changes (PTSD) then get OUT of crisis mode at every opportunity you can. Notice how quickly you kick back into it and rely on that – if it is needed you will be able to activate again, so quickly you won’t even think about it. But get out of it. I’ve discussed ways to do this and more behind the idea in other posts:
- Handling Hot Material – a simple approach ‘Pick it up and put it down again’
- Survival Lessons – how do ‘professional survivors’ of extreme environments do it?
- 5 Hours After an Assault – my partner Rose and I personally navigating a crisis, with explanations of the basic threat responses fight/flight/freeze/fold/tend-and-befriend
- Awesome Quote – Self Care – how do other people who have come through a lot of hard stuff still manage to function?
It’s not just okay to be ‘weak’, it’s essential to your survival. It helps you recharge and build strength for those times you urgently do need to respond to life. It also kicks you out of crisis mode in your body and brain, and back into your higher functions. For simple urgent issues like ‘I’ve just fallen in the lion enclosure’, or ‘he won’t get his hand off me’, crisis mode is perfect. (By simply, I do not mean ‘easy’, nor do I mean ‘not awful’. Some of the simplest crises you could ever face are some of the most traumatic and horrific!) You will react to the threat instantly, before you can even think about it. Non essential brain and body functions are powered down. That means memory, logic, digestion, and peripheral circulation, among other things. You become designed entirely to survive – to fight, run, or freeze. To survive blood loss, lift fallen trees, scream for help, run for miles, cope with intense heat or cold or severe injury, numb and dissociate through the unendurable and un-survivable.
When your crisis is complex – as ours often are in a first world country – and longer term – problems like chronic unpredictable relationship violence, gambling addiction, a stressful workplace, or a sick child needing round the clock care – crisis mode is mostly unhelpful. Yes, the adrenaline will help you sit up all night with the sick kid, but it will also give you the jitters, stop you sleeping the rest of the week, trigger heightened alertness to sounds, cause gut problems as you try to eat normal foods with a digestive system that’s basically in ‘standby’ mode, and make it very difficult to think clearly. You need your higher brain functions to manage these issues, and they are offline in crisis mode.
So, whether you’re facing something tough now, or dealing with the fallout of it, you are best served by making crisis mode as brief a part of your response as possible. Get out of it whenever you can – even if that’s only a 10 minute break sitting in the backyard while your Mum cuddles the screaming baby, get your system out of that mode and back into your higher functions so you can think and problem solve and navigate our complex world. Crisis mode will be there again when you need it, and hopefully your time spent out of crisis mode helps you set your life up so you need it as little as possible.
- Trauma Recovery – Traumatic Replay – to understand why we can trigger crisis in our lives and how to stop it
Best wishes all. There’s nothing wrong with you if you’re struggling with these things. Your brain and body are supposed to work like this. It’s called adapting to your environment. You just have to understand that they read all crises the same and try to manage them with a crisis mode that’s sometimes exactly what you need, and sometimes really unhelpful. You can work with your brain and body to get the best out of them, learn to ‘speak their language’ and accept how they work – just had a bad meeting with your boss? Well that anxious I’m going to throw up feeling is crisis mode – your body is full of adrenaline, your digestions has shut down, and your muscles are ready to run or hit someone but of course you’re not allowed to do that so you’re clamping down on your crisis mode like you’re holding someone down who’s struggling with everything they’ve got. Now you’re staring at your lunch feeling wound up and spaced out and thinking about having a panic attack or punching a wall or eating all the chocolate in the vending machine because all of those options would actually help your brain and body resolve the crisis mode and settle. Or you can take a brisk walk around the block to work off the adrenaline and vent on the phone to your best friend while you do it, and that will also get you out of crisis mode, back to higher functions, able to eat your lunch, sit still, focus on something other than your boss, and use the more complicated parts of your brain to figure out what you want to do about the situation. It’s not rocket science, but knowledge is power. You have a body and brain that want you to survive. Work with them! 🙂
Follow up post:
Mother’s Day
Love to all mothers, to those of us with hearts brimming over and those with hearts tattered and battered and torn. To those with hearts broken by yearning and sick with unrealised dreams. Love to those grieving, to those mothers who can’t or won’t use the word mother, who fall through the holes of our language into a silence, those who love dead unborn children, who mourn children lost, who love children they have no claim of flesh and bone and law to but love them anyway. Love to all women who love and give life to and grow something more than themselves.
Love to all children, to those of us with hearts brimming over and those with hearts tattered and battered and torn. To those with hearts broken by yearning and sick with unrealised dreams. Love to those grieving, to those children who can’t or won’t use the term mother for a woman who once bore them but did not love them well, who fall through the holes of our understanding into a silence, those who love dead mothers, who mourn mothers lost, who love women they have no claim of flesh and bone and law to but love them anyway. Love to all children and once children who love and are brought alive by and grow because of or in spite of a mother.
(thanks to Ellie Hodges thoughtful facebook post for the image)
High as a kite
Cool street art I walked past the other day.
I left home at 8:30m
I got back 12 hours later following a full day of college, and a wonderful dinner with the lovely people at Community Health Onkaparinga down south. I am very tired, and, in the words of my mother “high as a kite”. She’s not wrong. My brain is going a mile a minute. I have frantically written notes, literally cramping my hand trying to keep up. I am in a state just before mania – exuberant, brilliant, full of passion and the ideas are flowing thick and fast. It’s not mania yet because I’m still coherent and cogent, the ideas make sense to other people, and I am able to finish what I’m starting. But it’s intense. I did a whole day on 3 hours sleep the other day and no one could tell. I have endo and adeno kicking my butt and no one can tell that either. I am talking a mile a minute and in such a state of nervous system arousal that I’ve got insomnia and restless legs going on. I have made major breakthroughs in all of my work – college, the upcoming talk on psychosis, the networks, the book, the next few books.
It’s wild. Being an artist is like this – cycles of output and energy and quite times of rest and reflection. This is pretty full on but I’m still this side of an issue. Going to have a pj day tomorrow following a face painting gig, and take the whole weekend as gently as possible, especially considering we have mother’s day here in Aus on Sunday.
Taking care.
Blimey.
I’m Burning
I’m flying. I’m strong. I take up the space I live in. I have a voice. My mind is clear. I look after my body. I look after my soul. I’m learning how to do the things I need, what strange food and drink I must live upon: like sleeping under stars, running away from home, breaking the routines. It makes me strong. It makes me fly.
I have the most incredible life.
Today was amazing. I did things, with this fierce roar in my chest. I did difficult things, without anguish. I walked a long way through the autumn, wind blowing through my heart, feet kicking up leaves. I made soup, for dinner, with my hands, and felt connected to the simple needs of a body. I met with people and made plans and did needful things for home and business and networks and through it all I was bold and attuned. I gave out a lot of energy and did a great many things.
I’ve been finding what I need. Rose has been helping me so much. Lost in her own grief as she is, she has been so faithful. She’s organised and arranged each of the three trips we’ve taken since Tamlorn died. And with each, my head has become clearer. She’s cooked countless meals when I didn’t feel like eating, done hours of shopping and bought home treats to tempt me. She’s the beloved heart of my world.
My world has been kind. My friends give to me, in many different ways, so generously. I have a tribe who love me. My tutors are giving me room to breathe at college, to find my feet, to ask the questions I have to ask and find some end to the tangled thread I can follow. I have been very fortunate in my pain. I have been well loved.
And I am thriving. I’m bursting with energy and passion. I know this place, it’s intense. I’m in a state of growth and output. Full of courage and strength, I could uproot trees and dig lakes with my hands! It’s fierce and magic. I have to care for myself so it doesn’t burn me out, doesn’t wear me to the bone, doesn’t eat me from the inside like fire. I have to rest, to listen for strain and exhaustion, take days off, allow downtime. There are seasons in all things, including this. I will use the energy while it is here, build new things, tear through the obstacles that were defeating me, move my whole world. And I will listen for the tiring, the turning away, the winter settling in. I will slow and be still, retire, meditate, listen to the earth, when I need. And I will grow peacefully, the small things each day; the dedication of farmer tending crop and shepard the flock. Each season in turn.
But gods, it’s good to burn again. The Roar in me still ringing. This is life and I will suck the marrow from it.
Unplugging a little and connecting a little
We’re off again, borrowed a van and we’re camping all weekend under the stars and going to enjoy the Medieval Fair. These little get aways are doing great things for my head.
I’m watching to see what exactly seems to make the difference. One of them is being less plugged in to my online world. So when I’m home I’ve started sleeping with my phone in another room at night.
This morning I woke up and wanted to check it. There’s a kind of nervous compulsion to check up on everyone, see how the world is travelling before I start my day.
As a child, when life was bad, I used to wake in the night and sneak into the bedrooms of my family, checking to see they were still breathing. On the very bad nights I’d find a heavy stick or some kind of weapon and wait up alone in case I needed to protect them against violent home intruders.
There’s odd parallels, the wanting to check in, setting the tone for my day. Mornings without the phone there I check in with myself first. I set the tone for my day myself. Then I have a peek at my friends worlds.
This morning I woke up and wanted to check my phone. When I remembered it was in the lounge, I was annoyed for a moment. Then I remembered that the idea was to check with with myself. As I lay there I realised my neck was crinked at an uncomfortable angle causing a fair bit of pain. (mornings are always bad for fibro pain) I relaxed and settled into my pillow. The neck pain eased. I feel my energy settle back into my body. I felt relaxed and comfortable and safe. There was a moment of just me, in my own mind and body, before I got up and began the day. It was good. So that’s something I can do.
I’ve just remembered the first night I spent in a shelter for homeless women running from domestic violence. I lay under a thin blanket, on a plastic wrapped mattress, alone in a room with locks on the doors and window, my ptsd jangling me out of my mind. I could only sleep with my phone clutched in my hand – my lifeline to the outside world, my one hope in a place where I was trapped and powerless.
And that makes me think of the nights in the caravan I lived in for a year, where sleep only came at dawn, and so many nights only happened at all if I slept with my hand on the big carving knife, tucked safe under my pillow, in case he came hunting me. There’s no other way out of a caravan once someone has broken into your door.
Safety and connection has meant many things to me over the years, I guess.
My kind of crazy
Today was very long and very challenging. I did great and good stuff happened, but other stuff wasn’t great and the whole lot together was exhausting. The energy has gone completely. I was extremely dissociative by the evening.
Thankful for friends who let me curl up on their couch with a blanket and ice-cream, so I don’t go straight home and debrief with my tired hard working love who needs a break.
Thankful to be home now, curled up on my own couch, in my Totoro onesie, with my love.
I felt like I’d hit a solid wall at 100 miles an hour today. Hard work. The shock is easing and the dissociation is reducing now, and the feelings come up and pass through and my system gathers itself back from the burrows and deeps. Thinking is happening. I’m bowed but I’m not out off the fight. Definitely happy to be running of to the Medieval Fair this weekend though. No welfare office, no mental health work, no being confronted by my own naivete. Velvet dresses, swords, camp fires, chain maille… that’s my kind of crazy.
A friend tried to complement me today by telling me I was normal. I got where they were coming from, in mental health that’s the highest compliment for someone like me. But we had a laugh when I said that’s wasn’t really ever my aim. I don’t really understand people who want to be normal. It’s never been my holy grail.
Carpe Diem
Sometimes life kicks you in the face and you fall over and have to curl up and lick your wounds. Sometimes it just keeps kicking you and at some point you get up and kick back. That’s where I’m at now.
Two days ago, we sent Tamlorn for cremation. We took all your beautiful sendings with us in a box.
This is how mothers say goodbye – on their knees.
Yesterday we learned that our donor’s circumstances have changed and he’s no longer going to be part of our process.
Today I picked up Tamlorn’s ashes from the funeral company.
Tomorrow I’m going back in to the local welfare centre again to beg for help with these ongoing debt issues that no one ever returns calls about.
And I’m fighting back.
I’m sleeping. I’m cooking meals. I’m energised and throwing myself into life. I’ve started the new term of art college. I used the holiday to catch up on all the homework so I’m ready and focused. Things are different now I’m in second year subjects. This week I’ve actually felt like this isn’t a crazy waste of time. I’m getting some support for the kind of art that is meaningful to me, learning useful things about the history of art where I can place my own stress and ambivalence into context. I have a new sense of hope that there is a place for me and what I do in the art world, somewhere.
I am currently doing prep work for a gathering tomorrow of the potential board for the HVNSA and DI networks I’ve been care taking through my business. And I am excited! I’ve been reading a couple of books; Start Something that Matters by Blake Mycoskie, and Be a Changemaker by Laurie Ann Thompson. Social entrepreneur… it’s not a word I’m familiar with. I have painstakingly gathered business skills in my face painting business over the last couple of years. I am not good at marketing myself. I am good at giving things away for free to vulnerable people. But now at least, I can manage invoicing, tax, record keeping, and the basic admin of a business. And I am finding words for my passion for people, and models for what I’ve been trying to do. I feel less alone and bewildered and overwhelmed. The other board members are good people, conversations with them imbue me with hope about what we can do together. I am realising that what I most need at the moment is not to be doing this alone.
So, I’m burning with passion and my mind is clear and alert. I’m confident and imaginative and enthusiastic. I know this energy can’t last. No matter the cause, at some point the body needs to rest, the mind to recharge. That’s okay, I can do that. I’m astonished by my current state, grateful and relieved. I did not expect this. This has been an incredibly hard year. I’m determined to live fully, to embrace what I have and do what I can. I’m reaching out to country and interstate people about going and giving my talks – I’ve decided to offer some for free and ask for help to cover travel costs. I want to be out there, I want to be doing what I love, helping people. I don’t have a little baby in my arms, I may not even be able to try and get pregnant again this year while we look for and build a relationship with another donor. So I have a lot of love in my heart and there’s a lot of people out there who need a bit of love.
And when the night falls on my heart again and that flame of hope goes out… I want you to remember that one is not good and the other bad, one is not real and the other a lie. Pain, sorrow, anguish. They are as real and necessary and sane a response to my life as my current zeal. I am reminded of something I wrote a long time ago in Traumatic replay:
When awful things are happening I feel awful. I feel numb. I feel furious. I fight like hell. I feel strong. I feel helpless. I feel vindicated. And other people say things to me like “How are you still going?”, with respect.
When nothing awful is happening I still feel awful, numb, furious, but I have nothing to fight. I feel weak, helpless, stupid, pathetic, and full of self loathing. And other people say things to me like “What is wrong with you?”, with contempt.
Remember this day, tomorrow when I am broken again. They go together, the flying and the falling. This is the fire – I am forged strong, but I am also consumed and devoured by it. This is my life, ending one minute at a time. Carpe diem.
Poem – The Roar
We cremated Tamlorn yesterday. It was very hard to go to the funeral home, to face this painful thing. And yet, it was transformative. Unexpectedly, something shifted in me.
The scream behind my silence becomes a roar
I can breathe again, the weight lifts.
Perhaps it was not grief, but silence.
The silencing, the weight of a culture that says ‘do not grieve’
for fear of being accused of wallowing, or worse,
public wallowing.
Like cresting a steep hill, I inhale the view, deeply.
You were part of our family, dearly loved.
and we mourned you as we mourn our own.
Even the cats have graves – even little injured
wild birds that die on the way to the vet.
Something came and took you from us
into the night and I thought I’d never get you back.
There was just the void and a great silence.
A deep numbness. In that place, you did not exist, neither did I.
But somehow, in this defiance – naming you
mourning you, cremating you, in some way we drew you back
from formlessness, you took on shape
became a part of our family, honored by our rituals, inducted as a member.
Part of a legacy.
We are your home, love.
You are not a body washed up nameless on foreign soil
you are not a stray dog dying alone out in the bush
you are ours. We took you back.
You lived and died in our body
we have sung you to life and back to death again
we have burned you with lavender and rosemary
the drum of my heart calls your name
you are here, you are here, you are here.
Poem – Saying Goodbye
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.
Free Talk by me – Psychosis without Destruction
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
RSVP essential – to reception: 8378 4100
For a flyer you can print or share see here.
We went and we’re back again
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.
Running away
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.
Grief and the book
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.
Sarah K Reece 