Mental Health

The overarching topic, containing everything I’ve written in this blog about Mental Health. For content specific to only one Mental Health area, eg. multiplicity, use that link instead.

Dazed but loved

/ Sarah K Reece / Leave a comment

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Yesterday I went to the Adelaide Show with a bunch of my favourite people. They took care of everything including the driving, and generally spoiled me. One of my younger, less traumatised parts spent most of the day out and had a great time. We were exhausted from lack of sleep and the fibro pain was pretty severe but it was a good day.

My dissociation level is incredibly high and I’ve been having a lot of flashbacks the past couple of days. Lying in bed that morning having a stressful conversation on the phone, I could feel my sense of my own body dissolving, fraying, like oil spreading over water. I’m not driving until it settles. Tonight is a friends birthday costume party, I’ve gone along in my purple dragon onesie and eaten a lot of sugar. People have been kind. Gradually my sense of self will return, like scattered birds flying home. The flashbacks will go back to rest, ghosts back to graves. I’ll be patient.

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Poem – The things we don’t speak of

/ Sarah K Reece / Leave a comment

From my journal, 2011

And you want to know
about the things we don’t speak of
the places
only the mad ones go
that world is an island
we always walk alone

there is no speaking of it
who am I to break the silence?
to admit to agony
to betray my loneliness

if I only could
I would take you there
I would meet you there
where the light is orange
and the shadows breathe

if I only could
I would walk those streets forever
and you would hear my song
come in through the windows
closed against the night

you would meet me here
and there would be no words
or need for words
in that night there is only
the language of tears
and of touch.

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Quietness
Coming home
WEA – Self Publishing

Losing a friend

/ Sarah K Reece / 6 Comments

After a lovely anniversary dinner with Rose last night, we went back to her place, settled in front of the tv to look for a movie to watch, and I picked up my phone for the first time in a few hours to discover that a friend has died by suicide.

The loss is terrible. Amanda was my age, a beautiful caring person with an amazing childlike sense of humour. We first met through this blog and became online friends about a year ago, meeting at events here and there. I was hoping to get to know her better over time. We have mutual friends who are also hurting.

Rose and I, it turns out, are both sensitive to grief and suicide and react to it in very different ways. Last night was painful and fractious. Today is tender and raw. I feel dazed.

There’s an inclination after suicide to think that the person, in a sober mind, looked at their life with a detached eye and concluded that it was not bearable. Those of us who are vulnerable ask “If they couldn’t make it, how can I?”, “If all their wisdom/support/resources/insights were not enough for them, what can save me from my pain?”. I think this approach supposes a level of rational thinking, and a capacity of looking at life as a whole that many of us lack when we are suicidal. Sometimes it is not a summary of their life, it is a bad night. It is overwhelming pain, a loss of hope. It doesn’t take away from all that they’ve done, their kindness, joy, insights, tenderness, humour. Their life’s story is still about everything dear to them, the values they lived by, the way they loved, their passions and sorrows. Suicide is a part of that but not all of it, pain is part of that but not the whole of it.

This may not be Amanda’s story. I don’t know what happened at the end, if mania or despair took her. I only know my loss.

Death shatters us. Each is unique, suicide is different from accident, which is different from murder, or negligence, or long illness, or sudden loss, one person or a whole car of loved ones, a child, a parent, a lover. All have their own deep pain. All make us feel very alone. We struggle to find ways to unite deeply divided responses – I forgive you and I hope you are at peace / Please don’t go, it will tear my world apart. I love you / I hate you / I should have done more / You should have done more/ How did I fail you? / How could you do this to me? We try to find ways to speak that don’t glamorise or demonise ending your life, and it’s not easy. There’s a sudden ending to their story that we were not ready for. We haven’t said all we wished to. We didn’t know that hug would be our last. We review the past weeks and months with a new eye, jaded and worn by grief. Every word and gesture is imbued with new and terrifying meaning. We try to judge the tipping points, the final straws, the real reasons. We try to weigh your life in the balance, to work out why you left it behind. We feel sometimes that we have inherited, like unclaimed mail, the burden of pain that overwhelmed you. We feel stripped bare by the loss that love has brought into our lives.

Our culture is not good with grief. We have no shared days of mourning for lost loved ones. Grief often isolates rather than connects us. Our lives are structured in such ways that it’s difficult to find time to grieve at first, we’re numbed by work and funeral arrangements and all the administration of a life ended. Then there is too much time, alone and absorbed into a pain so deep and enduring we know in our hearts that we will never be the same and never be without it. We grieve in different ways, so that’s it hard to share, our cycles of needing to go into our pain and move away from it do not exactly match any other person. We fear death and pain and loss and withdraw from those who have been touched by it. It overwhelms us, takes us into dark places, cuts us off from life, and hope, and loved ones, and the needs of the living.

I don’t believe this has to be the way we mourn. Life, love, and death are deeply intertwined. Today, on facebook, another friend has given birth to a daughter. Her joy is palpable. With grief, we can warp around it in ways that wound us. I’ve felt this – it’s R U OK day today and I’m grieving the loss of a friend. I’d briefly thought about writing about R U OK on this blog a few days ago but let the idea go. I’ve been busy with art and business plans and relationships. I feel guilty for that. I wonder if Amanda was reading my mental health struggles here and they added to her burden. I wonder about our mutual beautiful and likewise vulnerable friends. I wonder about how to navigate a loss that is personal and public, as Amanda was a member of groups I look after. I wrestle with trying to find ways to respond that are respectful, that give everyone space to react as they need to. If I don’t take care, grief will tell me stories that harm me, like I am responsible for things I am not, or that life is brutal and without hope, or that I will never be happy again, or that love is too painful to bear. Without these wounds, grief isn’t lethal, it doesn’t destroy me in the same way.

For myself, I seem grieve best when I give myself to it. Grieving is like dying. Pain, numbness, apathy, rage, anguish. If I can accept it and make space for it, it makes me feel like I am dying but does not kill me. I make time to hurt and weep. I accept the numbness as a relief without fear or judgement. I accept the times of peace or even happiness without hating myself or wondering if I did not care enough. I move into and out of grief as my heart dictates. No one to tell me to move on or get over it, and no one to judge me for shock, dissociation, or still finding pleasure in life. I do not run from it in fear, and I do not hold myself in it to torture myself. I hold to two beliefs: they were deeply important, their loss, and my pain, must be marked and recognised. Life is also deeply important, and to be lived rather than shunned, both pain and joy. Grief then, is less a garrotte around my throat, barbed wire biting into my heart, and more a tide washing in and out, overwhelming me so deeply one moment that the world turns black and I cannot remember what life was like before it, and another moment withdrawing into a vast ocean and leaving me laying on the sand beneath an endless sky of dazzling stars. Like Persephone, my heart goes down into the underworld, and rises into spring, over and over.

This is only one way. There are a million ways to grieve. This is how I have grieved in the past, when I finally let go of the impulse to use death to terrify and torture myself. I may grieve differently in the future. I have lived in the fear of death, where in nightmares I lost all I loved. Since a small child I have attended my mother’s funeral many times in dreams. I used to drive home and see in my mind vivid images of my family slaughtered in the house and lying in their blood. My heart would pound until I laid eyes on a living person. I have been chronically suicidal and have cared for other suicidal people. I try to make peace that some of my friendships may have a short time in this world. I also rage against it, hold tight to my belief that hope is precious and essential, that our love for each other makes a difference. I remember the studies that talked with people who had tried to take their lives but survived, most later were glad to have lived, had lives they loved. Things had changed and hope had come back to them.

So, I’ve cleared a couple of days off. I’ve cried and slept a little. It’s raining softly here, I’m going to go and sit in my garden and plant some tiny plants into the earth. I’m going to give myself time to understand that Amanda is gone. I’m going to tell her how wonderful she was anyway.

Go gently.

If you need crisis support yourself, or just a listening ear, you can find hotline numbers and resources here. Read how to call ACIS.
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A year with Rose

/ Sarah K Reece / 2 Comments

On this day last year, my girlfriend Rose became part of my life. We first met online and started dating shortly after meeting in person. She’s a beautiful, generous, complex person I feel very privileged to know and love.

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Photo courtesy of Marja Flick-Buijs http://www.rgbstock.com/gallery/Zela

We’ve dealt with a lot over the year. We’ve both had health troubles. We’ve found ways to support and care for each other, to navigate the challenges of having two trauma histories and find joy in each other. I found myself reflecting upon a quote today:

Mama used to say, you have to know someone a thousand days before you can glimpse her soul.

Shannon Hale, Book of a Thousand Days

365 days today. I’ve glimpsed a little and what I’ve seen moves me.

Dating as a multiple is… interesting. Different parts have different relationships with Rose. Some date, some are friends, some more like colleagues, or little sisters. Each takes time and effort to cultivate, each brings something different to the relationship. Where one is tender and nurturing, another is mischievous and energetic. There’s a lot of adapting, and a lot of talking things through. It takes an extra special effort to be honest and authentic. Friendship is the foundation.

We’ve been talking about moving in together for a while now. It’s exciting but also stressful. For both of us, we risk losing our secure housing in a gamble on our relationship lasting – or at least our friendship lasting. As we’ve both been homeless, it’s a very raw area. One thing adds a sense of urgency to our plans, which is that we both want children. Considering the challenges of conception in a woman/woman relationship, health concerns, and our desire to have settled into living together long before we start trying, there’s a certain keenness.

When I met Rose, she had been trying for a baby as a single woman. She’s been pregnant and suffered losses before, a grief that is still very fresh for her. I, on the hand, as a sick single woman approaching 30, had all but given up on my own dream of children. Last year I started reading books on grieving infertility. To my surprise, I was given a clean bill of fertility earlier this year. With Rose’s deep love for children, and my sister back in the country, my own health limitations no longer seem such an impediment. I visit my delightful goddaughter Sophie almost every week and fall more deeply in love with her. We’ll keep dreaming and talking, trying to find a balance between pragmatism and optimism.

Falling in love with Rose has been amazing, maddening, glorious, exhausting, healing, and deeply satisfying. She’s the first woman I’ve fallen in love with, and she’s been a gentle and caring partner, laying to rest my anxieties that perhaps I was mistaken in thinking I was attracted to women. I’m now very settled in my identity as bisexual, or queer. I’ve ended many years of choosing to be single, which was the right choice for me at the time. Being in this relationship has given me so many opportunities to grow and learn, and unlearn, to share and celebrate life. It’s been eye opening to realise how much difference it makes to have such support, little things like watering the garden when I’m ill, big things like supporting my efforts in business. We’ve made the most beautiful memories, that I’ll always treasure. I’m grateful and I feel blessed.

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Storms at Sea

/ Sarah K Reece / Leave a comment

Last night was fantastic. It was rainy and stormy here, squalls of rain, then cold bursts of wind… so Rose, my sister, Zoe and I went down the beach. It was wonderful. I ran around whooping like a madman to encourage Zoe to run. The waves were high, the wind biting. We drank coco from a thermos, ate slightly sandy strawberries, and Zoe dug big holes to stuff her head into.

I felt free.

A part came out a few nights back who hasn’t been here in a long while. She bonded to Zoe, cleaned the house, and picked a fight with Rose. The fallout has been oddly settling. I feel attached to my dog for the first time in a long time. There’s affection when I look at her. Rose and I picked ourselves up and sorted things out. A cold wind blew through my heart. I love my house. There’s determination that, stay or go, I’m going to enjoy my time here, make the most of it. There’s good memories here, there’s scope for more.

Time off has been good. Less work, more rest, more chance to spend time connecting with friends – by which I mean more than just being in the room with them. Spring has walked through the windows and changed the colour of the light and the smell of the air. There’s a fierce joy in me suddenly, burning strong. The desire to devour life, drink deeply, inhale, crack the bones, run in the storms.

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Homelessness & Poverty

/ Sarah K Reece / 10 Comments

There’s an interesting conversation going on over on Amanda Palmer’s blog about the difference between asking and begging. They’re talking about it from the perspective of the relationship between artists and fans, crowd funding vs labels and agents, which interests me a great deal as an artist, but I’m also interested in the ideas as a person who’s been homeless.

Homelessness is one of the most screwed up, misunderstood, pervasive mess of a thing in our world. It’s a monster we don’t really even begin to understand. It’s something I’m wrestling with as I try to make life decisions about housing. It’s changed me in ways I’m still coming to terms with. I’ve never slept rough but I’ve run from violence. My girlfriend Rose has done both, first on the streets at 13. I’ve slept in shelters, on couches, in my car, and lived in a caravan park. There’s two big, complex, deeply unfair aspects to homelessness that most people do not appreciate when they give the topic a cursory glance:

  1. We have an absolutely bizarre, expensive, exclusive, complex system of housing. No other animal on earth has to spend a third or more of their lives working to own a home. Only a couple of hundred years ago, here in Australia we were settled by people who built their own homes from wattle and daub and whatever other materials they could find, in an act that is now illegal. Indigenous Australians certainly didn’t spend most of their lives trying to afford basic shelter. We have created this problem.When I had nowhere to live it was illegal for me to squat in disused housing. Illegal for me to sleep in my car on public property. Illegal for me to put up a tent on the beach, in a park, or by the side of the road. Illegal for me to find shelter in stairwells, drains, porches, bus stops, or emergency waiting rooms at hospitals. Illegal for me to camp out in the backyard of a friend in public housing. Illegal for me to stay more than a month at most caravan parks. We have made housing extremely difficult to attain for a lot of our population, while making being homeless illegal.
  2. Homelessness is not just about shelter. It is also about community. To be in a place where I am sleeping in my car means I have run out of social support. I have no friends who own investment properties they can rent out to me. I have no family willing or safe or in the same country. I have no mates who can drag out the sofa bed. We do not solve this problem merely by providing shelter to people, because if you’ve been homeless for awhile, you change. Your social world changes. You make friends on the streets. Most people learn how to steal food and basic supplies because getting welfare without a fixed address and a lot of paperwork is extremely difficult. Once you’ve adapted to that world, being dropped alone into an empty unit with no furniture, no community, and the culture shock of a world that includes a shower every day and a toothbrush is overwhelming. Many people go back to what they know. It took me over a year to get back my basic routines like brushing my teeth, for them to be easy and automatic processes I went through every day. That process was filled with shame and loneliness.

Homelessness has changed me. The cost was extremely high. It alienated me from my own society in ways I’m still struggling with. I hated everyone who had a place of their own, somewhere to keep their belongings safe, somewhere safe to sleep, a hub where they could sit behind windows and look out at the world and decide what they were going to do, and when, and how. Being homeless was about constant change, moving from one place to the next. It was about loss – my belongings, my pets, my garden. It was about failure – having to withdraw from uni studies because it was impossible to sustain them. Life becomes day to day, about survival, about where is the next meal coming from. Driving around Adelaide with a cardboard box of food as my pantry. Living on sandwiches from the service stations. Homelessness was about desperation and fear and shock.

I begged services for help. I rang every single service I could find and begged. There was no asking. Asking can accept a yes or no. I needed. I begged. I was told no. I got into free counselling at a local clinic. The counsellor told me there are empty beds in empty houses all through Adelaide. I just have to be persistent enough to get one. Keep ringing them. Insist. I keep ringing them. I was refused. Over and over. I was four months too old to access the youth homelessness program. Frustrated workers got angry with me, implied that it was my fault I was homeless. They told me that 26 year old people don’t become homeless. They told me that no one cares if they do. Told me I could sleep in the parklands. Told me to stop calling. The humiliation was unbearable. I stopped begging.

With my friends, I didn’t even ask. I couldn’t bear to. I knew that I’d beg, and that if they said no, I wouldn’t be able to look them in the eye again. Wouldn’t be able to pull a blanket of deniability over my pain and shame. I figured that if anyone had a resource they could share, they’d offer it. I embarrassed no one. When sleeping on couches, I left when asked. I didn’t cry, didn’t beg, didn’t ask for another night. Somewhere in my heart is a frozen scream that makes it almost impossible to love, or forgive, or believe in other people. Shame and rage.

Asking vs begging.

Asking comes from a place where the other person is free to say yes or no. Begging comes from need, from desperation. I want to be in a world where I’m never begging. I want to be in a world where all my friends are always free in how they respond to me, where they offer from love, deny from love, where guilt and fear and shame and power never enter our relationships. Because my homelessness was not their doing, and their burdens were already many. We tangle want and need in our culture, use the same terms for both. Need is raw, and harsh, and when we speak from it, it sears us. We’re ashamed of it and we feel deeply betrayed when other people don’t hear that we’re not asking, we’re begging. Ask anyone who’s ever been life-threateningly ill and watched most of their friends drift away. We’re used to being able to ask. Begging, when we’re forced to it, is something else entirely.

Begging, and the loss of dignity that comes with it – for the one who begs and the one who is begged of, is the reason we have welfare.

A poor man, as distinct from a complete pauper, has at least some sort of dwelling and he does not dress in rags but respectably. Poverty can be noble, by pauperage is repulsive… You are the powers that be, and your primary responsibility is to ensure that every inhabitant of this province has a piece of bread and roof over his head, since without these basic necessities man cannot have any dignity, and a man without dignity is not a citizen. Not everyone can be rich… but everyone must be fed – not only for the sake of the destitute but for everyone else’s sake as well, so that they do not have to hide away shamefacedly from the poor as they eat their fine white bread. Those who feast in the midst of wailing and misery will not be dignified.

from Pelagia and the White Bulldog by Boris Akunin.

It’s the reason we need a radical shake up of how our housing works. We don’t have to have the system we are used to. Many other places in the world use completely different approaches to housing, housing where all homes are owned by the state, and all tenants are paying to own rather than to rent. Housing that can be built by communities or individuals, and cost a few months wages rather than 10 years. I’m not saying it’s easy or that all the alternatives work, issues with tent city slums and high rise ghettos are terrifying. But what we have is appalling, we have maintained the dignity of the housed by keeping the homeless in our midst invisible.

We can also look at a community and culture change. I remember once speaking with a lovely hippy girl at a party. When the topic of homelessness came up I talked about how painful it was when a worker told me derisively that I was lucky to have a car to sleep in, with the implication that I had no right to whine because so many other people had it worse. The hippy gave me an odd look and told me that, well, I WAS lucky to have a car to sleep in. I felt punched in the gut.

I’ve thought it over a lot since and come to consider that community is probably the difference between her situation and mine. When you are part of a broad network such as the hippy subculture, home isn’t bricks and mortar. Ownership isn’t the same. Some degree of nomadic travelling is normal. Barter trade for handmade goods is normal. WWOOFING (working for rent) is normal. Home is your friends, is your experiences, is your capacity to offer something to that community and to rely on it.

This is not what I experienced because I lost almost my entire social network through relationship breakdown and domestic violence. I didn’t have a sense of family anymore, much less an extended one. I had nothing to trade or barter because I was exhausted, extremely sick, and in severe mental and emotional pain. I had no safe hub to keep precious belongings. I had no idea what the next week, month, or 5 years held for me. I lived on the edge of my life, with a tenuous hold on the world, fighting to survive and chronically suicidal. I was disabled by chronic physical illness and barely able to care for my basic needs. The first time I was homeless I had not yet been diagnosed with Dissociative Identity Disorder, but I was a switchy, confused mess, drowning in a dissociative crisis. When my car broke down one night driving back to a flat I rented with the help of a friend for a year, there was no one to call, no money for the RAA. I walked kilometres home in the small hours of the night, alone and afraid to a unit that I could not afford to stay in for long although I loved it dearly. On another occasion, I was on the run with a family member who was in the grip of a mental breakdown. I stayed for the allowed 2 weeks in a motel organised by a domestic violence service. At night I would lie in the bed, listening to the sounds of glass breaking as the men came to the motel, which was well known as a cheap local place that women on the run were housed, and reclaimed their women. During the day I fought with the mental health services to find care for my desperately suicidal family member, and tried to coax them to eat anything. There was a screaming pain in me that never went away.

Begging changes you. Every support I accessed, every bit of generous assistance I was offered by friends or by services, frightened and humiliated me. There’s a bitterness and a terror of being beholden to other people that has profoundly affected my capacity to engage with other people. My experiences with services were brutal and degrading. After being in a homelessness shelter in 2006, I made the call that next time, suicide would be higher on my list of personal responses to homelessness than seeking support from a shelter. I was surprised by people’s sympathy for my life in a caravan park, which was often peaceful, and their assumptions that a shelter run for women escaping domestic violence would be safe and peaceful, when my experiences with the staff were anything but. They refused to allow me to bring my scooter even though I was very ill and unable to walk far unaided. On cleaning days we were locked out of the facility and told to walk into town. Unable to walk that far I sat in the gutter and cried. I watched as young women who had bravely fled their known, but violent, lives for the total unknown of a DV shelter with two bags of clothes get housed in boarding facilities full of older violent men with criminal histories and drug addictions. Such courage rewarded with such suffering. For this, we are expected – we are required – to be grateful. We exchange the brutality of domestic violence for state sponsored violence against our dignity for which we are to blame and for which we should be grateful.

When I was incoherent with rage, a friend once summed up my own feelings for me; I’d rather die on my feet than live on my knees.

Another friend once kindly drove me around Adelaide in a heatwave to buy me one of the last evaporative (water cooled) air conditioners going because my health problems were causing me to suffer chronic heat stroke. I sat in the car in a frozen state, unable to speak, my hands dripping with sweat from anxiety, feeling like I was going to vomit, as around and around my brain two voices looped endlessly: “What is this going to cost me?” and “I hate myself“. My response to their generosity was terrified withdrawal, silence, an inability to tolerate touch or make eye contact for months. I remember stuttering as I forced myself to look them in the face to say thankyou when they left, hoping that somewhere through my terror I’d been polite, that I’d communicated that I appreciated their gift. There’s no dignity in this.

A generous friend who’d helped with money over and over during my homelessness once visited to say sorry for not offering to house me when I had nowhere to go. And I couldn’t deal with it, couldn’t reply, because by saying it they’d broken my pact not to look it in the face. How then could I respond? I had no words to explain the mess inside of me, that I loved them for their kindness, and envied them their house, and hated them for having what I did not, and felt grateful and blessed and humiliated by their care, and worthless, and that I forgave them, and that I could not forgive them or anyone else for the suffering I’d been through while they had not, that my world has collapsed while theirs continued, and that I hated myself and wanted to die and felt broken beyond mending and unworthy and defiant and furious about issues between us I couldn’t resolve because I owed them too much to make any criticism of them, and that I had words for none of this.

How to speak of the nights where the ghosts of everyone in my former life came and stood my bed as I tried to sleep, and tormented me in nightmares? How to speak of my rage when new friends told me that things would be okay now, when I knew my life was built on dandelion and would blow away in the next breeze, like it did, leaving me homeless again. The raw intense rage and pain I was always swallowing down and trying not to show. The Gap between me and the rest of the world. My desperation not to destroy the few relationships I had left. I was paralysed. Living in agony amidst regular lives and trying to hide the signs so that I wouldn’t be rejected. Most of my friends – for various reasons – trying to do the same.

Homelessness and poverty. Asking and begging. Alienation and community.

Sitting in my public housing unit now, watching the afternoon sun grow golden against the far wall. There’s a hate in me that would do violence against even the good people, a dog that bites the hand that feeds. I understand the rage of the disenfranchised, the place where dreams and dignity break and all that remains is an empty amusement at the world of attachment – at people so hopelessly invested in their lives that they hurt when you take things from them. These are the young on our streets, setting fires, breaking windows, tearing apart what little safety we’ve been able to craft for ourselves. They are part of the chaos and the pain now, it speaks through them and moves their hands to spread the night.

How to find grace in this place? I have been a poor leper, shrinking from touch.

The Lepers Who Let Us Embrace Them
by Kathy Coffey

Youthful, healthy, oozing joy,
Francis gets the credit.
Yet what of one who watched
him coming, dreading charity?

Which one is named saint? One rose
beyond hostility and shame to grace.
Centuries owe the leper thanks; he,
compassionate, accepted Francis’ kiss

(see the whole poem here)

How to forgive myself? How to forgive anyone? How to build a life from this, this wreckage, more, this black earth, so rich and fertile. Where lies our security? Where is my home? How do I, as a person who is often sick, who needs welfare to survive, who lives in this culture, this strange world, live and make choices with dignity? Asking vs begging.

Long grow the shadows into the light.

Escape

/ Sarah K Reece / Leave a comment

Today Rose and I braved a scary medical appointment and then treated ourselves to icecreams down at the beach. I’m continuing my campaign to escape my life as much as possible. My sister is looking after Zoe some nights so I can stay with Rose, where I’m staying up very late to keep her company by text on her night shifts, watching a lot of TV, reading a lot of books, and generally not going mad. Today I even spent an hour in a hammock with a blanket and a book,  watching two ducks waddle around the back yard. It is so damn good to spend a few hours not thinking and worrying about my future.

My system has been pretty lively, kids were skating on the polished floor boards on socks, a teen started a tickle fight with Rose. We only did one neurotic crying jag all day and no hallucinations.

We’ve been cleaning up at home and it’s no longer so cramped with mess which is helping. The sooner we can move furniture around the better. There’s nasty admin waiting as usual, but for now I’m indulging my wish to run screaming from most of my life, responsibilities, and sense of familiar ground. Like the trip to Broken Hill, these hospital substitutes do seem to work for me, thankfully.

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Coming home is sad

/ Sarah K Reece / 2 Comments

Home, and it hurts. Somehow I pick up right where I left off. The unhappiness is so driving and intense. I’ve hauled myself out of a deep pit of self hate/self harm/depression so that a shaken Rose can head off to her night shift without panicking about me. It was good to be gone for a few days, like being able to breathe. None of this. Home again and within a few hours I’m almost hysterical with distress. I’m trapped within conflicts I can’t resolve. I want to move in with Rose, now that she’s working 2 days and 3 nights a week I have no weekends with her anymore, just a couple of nights here and there, and I hate it. I want to be there when she gets home, I want to sleep close even if we have no waking time together. I want to be near to help when she’s sick, to be able to reach out for her when I am. I also don’t want to give up my secure public housing unit. The conflicting needs there feel like I’m being torn apart. I love Zoe, I am deeply invested in her and appreciate how much easier she makes my life when someone with quite bad PTSD feels safe home alone despite homophobia and vandalism in my neighbourhood. I’m also exhausted by her. I can’t keep up with her needs, not only the high energy but the need for contact. I can’t sleep away from home because she becomes distraught if she’s left out at night. I can’t dry my washing at home because she tears it off the line and chews holes through it. I love my home but I can’t garden because she digs up or eats all my plants. I can’t sit out the back anymore because she has destroyed my chairs and even my aluminium table and umbrella. I can’t garden the front yard because my neighbours harass me and people steal from me. I am so desperately tired of thinking through the issues of owning her, resolving them, then putting it all back on the table when something new comes up with her because I am desperately unhappy and something has to change!

That dangerous combination of emotional exhaustion and frantic unhappiness where half the decisions that seem right at the time you will regret once you’re through the bad patch. I hate it, I hate all of it.

It was good to see my poets again. One of them has died since I last met them. I have his book in my collection of poems. This trip I bought another book ‘Strands’ by Barbara Di Franceschi. It’s beautiful. She writes

you hold
my feelings
in paper boats
afloat
in this music

Barbara and I talked about the virtues of self publishing poetry and retaining control over your own work. Another poet asks where the books of my poems are. Another project in the works I tell him. When I get home I reach for the book of the departed poet. I’m captured by the idea of leaving something behind me. On the long dark drive back I talk with my sister about the project, how it might work, how to lay it out and make it work. I think about what I’m already doing every week and try to work out what I could drop to do this instead. I think about how much work this blog is and try to work out if it’s worth it.

Part way driving home the phone reception returns and a DI facilitator reaches out to discuss something about Bridges. I suddenly can’t catch my breath, my stomach drops, I’m shaking. It takes an hour to feel myself again. At home that night to beautiful Rose and a house full of pets there’s gifts to share and photos to show. Urgent admin requires attention and I manage it for a couple of hours without crying. ‘I hate myself’ starts up in my head. The next morning I’m up after not many hours sleep to go and face paint. I’m exhausted and stressed trying to find a place my map doesn’t recognise. I wish I wasn’t working and nothing makes sense to me. I pull it off and come home tired but pleased with myself and my art. My home is a horrible mess. I’m chilled and a chest infection is starting to develop. I find clean socks but they collect grime and pet hair from the floor so quickly I put them in the wash basket and go to sweep the house. The dog howls pitifully when left outside for only a few minutes while I sweep. The sound makes me want to scream. The kitten tracks kitty litter all through the house. There’s nothing fresh for dinner. I just want to put on a pair of warm socks (all in the wash) or failing that just socks, and clear the dining table. An hour of cleaning later and I’m sobbing on Rose’s shoulder. I have so much to do and I can’t manage it. I hate my house and my life and myself.

I still haven’t contacted college to wrap up the mess of last semester with all the illness I suffered, or arrange new classes. My life feels precarious. One wrong move and I’ll shatter everything I’ve built. Some days I feel secure, some days I feel moments from disaster. Some days I can’t feel anything, just a bitter numbness. I don’t recognise anyone or believe anyone cares about me. My friends seem distant and I’m swamped in raw pain and can’t connect with anyone. I feel ruined. There’s a sickness upon me, a worm in the apple. I hold myself tight because it seems that if I breathe, I will lose everything and everyone. Where once I endured hard long nights alone, suddenly my pain is communal, affects many people, spreads like a disease.

I drive to see Rose, she’s crashed in bed after a night shift. It is complicated and takes forever, car keys are lost, roads are blocked, I’m increasingly frantic and exhausted until I finally accept that today, nothing will work my way. Hours later, sleepless and spaced out I turn up at her house with two $2 burgers from a fast food joint. Her flatmate is away so I have the rare opportunity to visit while in a vulnerable place. I creep into bed with her and we sleep in each other’s arms, holding hands. The agony dissolves. A younger one is finally able to switch out and breath for a little while. We stay there all day, sleeping, dancing up the hallway in socks, and nest in front of the tv. Rose has to go back to work. We stay until 3am watching sad tv shows, Wallander, Without a Trace then drive carefully home to Zoe, trying not to disturb the equillibrium. The night is empty and we’re grateful. Zoe sleeps outside the door. We crash to bed and sleep for 11 hours. The world turns, and we’re still alive.

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Poem – Morton Boulka

/ Sarah K Reece / Leave a comment

On my trip last week to New South Wales I sat by a river in a place called Morton Boulka and wrote this poem.


Here on the river
watching the sun sink through cloud
wrens, dancing in the scrub
I think of what it is to be an explorer
To adventure, boldly, to stride
over distance and discomfort
to drink life in.

I think on being a wanderer, less bold
more drifting with tides
washing onto shore unplanned
watching the world through eyes
open to joy.

And I think then of that other, inner realm
the place I go when my body is broken
or life is cruel and the traps about me binding – 

The long walk down the hallway of my home
at night, the television hushed
the empty bed waiting
and the darkness all around me
suddenly full
The pathway before me slanting down
to my mind’s underworld.

I’ve been all these, in time
The brave explorer, the wanderer, the traveler of inner worlds
each to their seasons
the needs remain the same:
good company is appreciated,
a meal to share,
and a path home.

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Camping Checklist

/ Sarah K Reece / Leave a comment

I’m off again for a few days – there may be blog silence as I’m not sure if I’ll have a phone or net connection. I’m heading back to Broken Hill to hang out with my poets and get some wind in my hair. My sister and I arranged this a few weeks back – now it’s happening that the trip will be my version of a break away in hospital. Out bush does good things to me, good things to my soul.

If you love travelling or camping too, you might find my checklist a good place to start in creating your own. I don’t take everything for every trip, and most trips we come back and add something new we hadn’t thought of, or rearrange how items are stored a little bit. But it’s good to have a quick checklist, and a basic system of grouping stuff makes it much easier to find.

Murphy’s Law is that if you forget an item from your first aid kit, that will be the injury that happens that trip. You have been warned! 🙂

Equipment

    • Table
    • Chairs
    • Tent & Tent pegs
    • Hammer
    • Gazebo & Walls
    • Sleeping bags
    • Pillows
    • Airbed & pump/mattress
    • Gas cooker
    • Gas bottle
    • Firewood & kindling
    • Drinking water

Munchie Bag

    • Trail Mix
    • Water/cordial
    • Bakery items
    • Chocolate
    • Licorice
    • Fruit
    • Twiggy Stix
    • Iced coffee/energy drinks
    • Wet wipes

Food Box

    • Fry-up Ingreds
    • Sushi Ingreds
    • Potatos & toppings
    • Tuna Patty Ingreds
    • Cereal, Porridge
    • Pancake mix
    • Tinned Fruit
    • Bread
    • Sauces – tomato, tartare
    • Mustard
    • Jam
    • Tea/coffee/chocolate
    • Marshmallows
    • Muesli Bars
    • Chocolate
    • Fruit
    • Crackers
    • Cordial
    • Wine
    • Baked Beans

Esky

    • Frozen water
    • Milk
    • Butter
    • Mayo
    • Eggs
    • Cheeses
    • Meat
    • Salad veggies
    • Dip

Kitchen Box

    • Salt & Pepper
    • Sugar
    • Plates & bowls
    • Pot with lid
    • Small skillet
    • Griddle iron
    • Alfoil
    • Cutting board
    • Cutlery
    • Chef knife
    • Veggie peeler
    • Tin opener
    • Wooden spoons
    • Fish slice
    • Ladles
    • Tongs
    • Mugs
    • Toaster

Laundry Box

    • Insect Repellent
    • Sun Block
    • Tissues
    • Cold Cream
    • Wet Wipes
    • Torches
    • Batteries
    • Shovel & toilet paper
    • Pegs & washing line
    • Shoe waterproofer
    • Matches
    • Gas cooktop
    • Airbed pump & plugs
    • Plastic rubbish bags
    • Dish cloth
    • Dishwashing liquid
    • Pot scrubber
    • BBQ Cleaner
    • Tea Towels
    • Old Towel
    • First Aid Kit

First Aid Kit

    • Bandaids
    • Bandages
    • Tweezers
    • Needle & thread
    • Eyewash
    • Alcohol swabs
    • Hand sanitiser
    • Tissues
    • Nail clippers
    • Cottonwool/buds/gauze
    • Medical tape
    • Safety pins
    • Burn cream/zinc
    • Non stick dressings
    • Scissors
    • Matches/lighter
    • Panadol/asprin/ibuprofen
    • Pain relief gel
    • Steroid cream
    • Tea tree oil or spray
    • Antihistamines
    • Cough drops
    • Moisturiser
    • Pawpaw balm
    • Ventolin & spacer
    • Antiseptic
    • Hair bands & clips

Individual Bags

    • Complete change of clothes
    • Walking shoes
    • Slip on shoes
    • Bathers & towel
    • Sun hat/beanie
    • Jacket
    • Warm socks
    • Gloves
    • Toothbrush & paste
    • Hairbrush/comb
    • Razor & soap
    • Sanitary items
    • Meds
    • Contraception/lube
    • Deo
    • Shampoo & conditioner
    • Face washer
    • Cold cream
    • Stuffed animal
    • Books

Extras

    • Sunglasses
    • Cash
    • Cards/dice
    • Boogie Boards
    • Scuba gear
    • Aqua slippers
    • Wetsuits
    • Camera
    • Maps
    • Spare batteries
    • MP3 player
    • Paper & pens
    • Art supplies

I’m hoping the time away will be worth the admin hangover it will give me when I get back, and the unhappiness at leaving Rose behind because she has to work. 😦 She’s going to be looking after Zoe while I’m gone… so I’m not real sure what state her mental health will be in by the time I get back at the end of the week… 😉 I’m lucky to have such support around me.

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Speaking at the World Hearing Voices Congress in 2013

/ Sarah K Reece / Leave a comment

I’ve received an email to say that my paper “Supporting someone through a dissociative crisis” has been accepted as a 20 minute talk, and I’ve been asked to create a poster form of “About Multiplicity” for display at this years World Hearing Voices Congress. Hurrah! You can read the abstracts I wrote here. The conference is being held in Melbourne in November. I’m really excited to go again and meet up with some of my amazing online friends. I’m feeling isolated here in SA and I really need the boost – I need to spend time with other people as passionate about mental health reform (and, perhaps, as cynical about the effectiveness of mainstream services). I need to feel part of a worldwide movement. The last time I was able to attend a Hearing Voices conference it had a profound impact upon my mental health work. Because I’m not part of a big organisation I can feel very alone at times. It makes me incredibly sad to see the same myths and misinformation over and over again, to hear the same stories of shaming, alienation, and indignity. It starts to feel like moving a desert with a sieve.

I’m feeling more and more settled about the job choices I’ve been making this year. Crazy as it seems to be focusing on a job in the arts world, it’s easing a sense of exhaustion I’ve been feeling about mental health/community services work. I still care passionately about these fields, but building a home in arts to make a difference in the world feels like a much better fit than trying to build a home in the world of mental health, at least for now. It’s not like mental health is going anywhere… I’m tired of working in such a conservative, conventional sector. I’m tired of being the outlandish one. In art I don’t stand out so much for being alternative. I don’t feel like I’m working so hard to function in an environment that’s basically alien to me. I don’t have so many arguments about boundaries being too harsh, and the need to treat people as equal humans.

Rose says I often come home from peer work shattered. I tend to come home from a day face painting in pretty awful physical pain, but otherwise elated. There’s a joy in it for me that’s very simply about creating something beautiful and making people happy. For now, that’s good enough for me. I’ll work and save to send myself over to Melbourne. I’ll keep the DI Inc running as best I can, with the various groups. And I’ll keep looking after myself.

Poem – Delicately balanced

/ Sarah K Reece / Leave a comment

From early journals, I think around 2001. Brought to mind by my recent brush with psychosis.

Delicately balanced
Is my mind
The precision of a fractured instrument
The constant slight shudder
Threatening to fall completely
And shatter beyond recognition.

Some days the feeling
Of being slightly out of kilter
Is almost buried
As if the fractured world
For a moment moved upon its axis
To my degree, and with that tilt
Things seemed almost right
But the limping sphere
Moved upon its course
And left me, leaning my head slightly
Trying to make the images line up.

Other days I wake

And stagger, feeling the whole machine
Sliding, tilting
Feeling pieces fall
From the edges of my mind
Until I fall into the darkness
To the sound of glass breaking
And the whole broken mess
Slices through my face
Leaving me blind, deaf, and mute
Lost in the shadows
With my hands full of broken glass.

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Psychosis

/ Sarah K Reece / 5 Comments

I sometimes have issues with temporary, stress related psychosis. This is very common in many conditions such as PTSD. In my case, I tend to hallucinate. My reality testing is usually intact (which means I’m aware that what’s happening isn’t real). I also become quite dissociative, have panic attacks, and may struggle with mild paranoia. All these things tend to feed into each other – eg the more anxious I am, the more psychotic experiences I have, and the psychotic experiences I have, the more anxious I get. I can struggle with this because of physiological stress such as bad reactions to meds, or due to psychological stresses.

Last night was a very bad one for me. Working out what the triggers are for these sudden degenerations can make a very big difference to my ability to predict and manage them. I’m frustrated but hopeful that this will be the case with this situation.

I think that interpersonal stress (eg conflicts in my important relationships) might be another really vulnerable area for me. There’s been a few lately, and yesterday just happened to involve another four conflicts to navigate in relationships important to me. By evening I was shattered and worn out. I went to bed to watch the other half of a movie I’d started last week; Solaris. Last week it was exactly what we needed, thoughtful and soothing. Last night different parts were watching and it fed straight into the high stress.

My peripheral vision filled up with shapes. There was a strong sense of being watched, or of something being behind me. I became profoundly afraid of the dark outside my room – which is unprecedented as a adult. I was afraid of the dark as a child but since PTSD feel safer hidden in the dark than I do trying to sleep in a light room. My anxiety went into overdrive, which is also unusual for me. I’m used to minor hallucinations, they don’t usually come with emotional distress. I did a massive skin flair and broke out in huge hives that antihistamines made no difference to. Insect bites from several days before suddenly swelled up to the size of golf balls. The sense of panic was intense, I was choking on a scream for hours. I struggled to calm myself down but none of my usual approaches worked. It felt like reality was dissembling around me. Knowing that it was me rather than the world that was falling apart had no comfort.

Things moved in my house in the dark beyond my room. If I looked at the dark, nightmares coalesced in front of my eyes. I found myself passing out for micro-sleeps and waking with a scream. My skin prickled and rippled with terror and all my hair stood on end. I felt nausea and  I knew that sleep was critical, if I could ride the adrenaline it would start to ebb and I’d probably sleep deeply at that point. Lack of sleep amps psychosis. I just needed to stay this side of total terror, otherwise I’d have to get ACIS or someone else to intervene. I was close to that point. I was able to fall asleep in the end. I woke to my alarm for a planned meetup with friends today to sort out my paperwork. It turns out it had been cancelled due to illness, which is probably for the best. I wish I’d had the extra sleep.

Rose turned up this morning and I didn’t recognize her. I knew who she was but she had no familiarity to me at all. I explained what was going on and told her about all the relationship conflicts. She’s supported other people in this place and knows how to connect and be calming. When I close my eyes, I start dreaming immediately, seeing things in the dark. I can’t look at a dark room without seeing things in it. I’m dreaming while awake, which is still the best description I’ve ever heard of psychosis. I stay in bed all day, talking with Rose. She brings me small meals of things I can keep down. Food is also essential to reduce the impact of psychosis. We keep the room light, we talk about the future, about good things I’m looking forward to. She’s not afraid of me. The fear eases. I try to nap, but when I close my eyes the visions start instantly. I lose my sense of place, feel like I’m falling, like I’m fraying apart. When I check facebook, I see a friend struggling with psychosis. I message them with these suggestions, a few possible different ways of engaging a psychosis:

1. Grit your teeth, keep your head down, and get through it, because it is temporary and will pass.
2. Do major stress management; take time off work, go for longs walks, hot baths, go away for a few days (tell someone if you’re going to do that!) whatever would reduce stress for you
3. Get help to break the spiral of high stress > poor sleep > psychosis > high stress… Anti psychotics are actually major tranquillisers, they can be really helpful in the short term to get some rest and break the spiral. Any other things that help you to get decent sleep and keep decent amounts of food happening will also help you to not spiral and heal instead.
4. Emotionally connect with others to communicate emotional distress, which often drives this stuff, and to get safe reality checks.

I read some James Herriot to Rose – it’s gentle and has no supernatural themes. I have a horrible headache. I drink a lot of fluids and take mild pain relief. The fibro pain is bad. Rose rubs pain relief gel into my back very gently. When the anxiety gets low enough I find I can lie next to her and close my eyes. The visions don’t frighten me, they’re just dreams. I fall into them and sleep for a couple more hours. It helps.

My mind feels like it’s made of crystal, fragile, humming with it’s own energy, needing to be held gently. I feel calmer, fragile but calm. My peripheral vision is still full of shadows. I’ll sleep with the lights on tonight. I keep the tv running. It will pass.

Follow up – Where does my psychosis come from?

Abstracts for the World Hearing Voices Conference

/ Sarah K Reece / Leave a comment
Later this year this amazing conference is being held in Melbourne and I’m determined somehow to go. Last year it was in Cardiff, and I had an abstract accepted but was unable to fund the trip. I’ve just submitted this bio and these three abstracts… wish me luck. 🙂

Bio

I’m a poet, writer, and artist living with ‘multiple personalities’. I’m co-founder and chair the board of non-profit organisation The Dissociative Initiative. In the past few years of work in mental health I’ve been developing peer-based resources, facilitating groups, and giving talks and presentations about dissociation, trauma recovery, and voice hearing. I’ve also been a full time carer for others with ‘mental illness’. I’m passionate about creating alternative frameworks to that of mental illness and reclaiming madness as valuable.

Voices as parts: Understanding multiplicity and other dissociative experiences

Dissociation is often misunderstood and ‘multiple personalities’ is seen as rare and bizarre. Some voice hearers are struggling with dissociative issues and/or experiencing some of their voices as parts. These are commonly interpreted as psychotic experiences and can be confusing and distressing, such as the sense of being possessed. I will share some of my personal experiences of how dissociation affects me, what it is like to have voices that are parts, and strategies I have used in my own recovery. I will also share a framework for making sense of the array of dissociative experiences, including multiplicity. My experience has been that multiplicity is a spectrum, and I will explore common forms of multiplicity we can all relate to in a non-sensationalist way. I do not locate these experiences within the ‘mental illness’ paradigm, but nor do I minimize the suffering they can cause. For people who hear voices that are parts, there can be additional challenges to recovery such as conflict over control of the body. Parts can present a voice hearer with an additional threat to their sense of identity, and their exclusive right to determine the course of their own life. I will explain some basic principles of working successfully with parts and living as a multiple. I hope to inspire people to feel more comfortable and confident in discussing and navigating dissociative issues, and encourage people that it is possible to live well with voices who are parts.


Embracing Diversity – Life as a Tribe

I will share my experience of living with voices who are parts – from confusing childhood issues, diagnosis within the mental illness paradigm, to my current passion for peer work. A personal sharing of my own movement towards greater understanding and self-acceptance, and my rejection of the mental illness model in favour of “a grand adventure of self discovery”. I’ll share sad and funny life stories about multiplicity that will help people better understand the experience and reflect upon their own identity growth and relationship to community. Drawing upon my skills in the creative arts I’ll share some of the pain and joy of life as a tribe. This talk will invite audience questions and welcome friendly curiosity about the nature of multiplicity.

Supporting someone through a dissociative crisis

Despite the psychiatric tendency to divide experiences into discrete categories, we are becoming more aware that experiences such as anxiety, psychosis, and dissociation can commonly occur together. We now have Mental Health First Aid training offering suggestions to support people through various common crises such as a panic attack. However, few of us know how to recognise or support someone experiencing a dissociative crisis. I will discuss common experiences, an understanding of triggers, and the role of trauma. Common problems for people with parts in crisis will also be touched upon such as major internal power shifts, abuse between parts, vulnerable or child parts getting stuck ‘out’, and chronic cries for help. Harmful coping techniques will be explored in the context of an attempt to manage and gain control over these experiences. I will demonstrate how to understand and map these harmful approaches, such as alcohol abuse or self harm, in a way that opens up many other possibilities for effective grounding techniques that are individual and specific. The protective role of dissociation will also be discussed, and the need at times to trigger or increase dissociation both for safety and to make possible deep emotional renewal. 

About Eating Disorders

/ Sarah K Reece / 2 Comments

There’s more than one way to get an eating disorder. Eating disorders are another mental illness that, to my mind, are poorly defined or understood, often mis-characterised and stereotyped, and far more complex than most people realise.

The DSM has a truly bizarre way of classifying eating disorders, with single symptoms such as weight or menstruation sufficient to bounce you out of one category and into another – and back again should those symptoms change. I don’t find this useful at all. I prefer not to use the clinical terminology and the irrational clusters of symptoms. I prefer to talk about food and body issues. This is a big category, there are many different ways these issues are expressed, and many different reasons people find themselves struggling with these issues. Our classic perception is a young woman starving herself because she fears getting fat. This is real, it happens. But the field is so much broader than this too, and the complexity of people’s distress so much more than we, as a culture, really understand.

The categories I find most useful are simply descriptive of behaviour or compulsions. Some people are not eating enough. Some people are eating more than enough. Some people are purging what they eat. A lot of people are doing two or all three of these. So we have restricting, binging or overeating, and purging.

These issues are prevalent! They are under-resourced – in SA we have only 2 inpatient hospital beds to support people with eating disorders – for our entire state. In my work as an ED Peer Worker I have often discussed and supported people to travel interstate to Victoria or Queensland for inpatient treatment as the wait list here is so long. We recently also lost our free counselling service for people with eating disorders that was running through Women’s Health Statewide. And yet, Eating Disorder are significantly on the rise in our population, and they carry the highest mortality rate of any of the mental illnesses. The risk of suicide is high, and the physical complications of disordered eating can be severe.

But the community perceptions can be appalling. It is assumed that people who restrict food are the most ‘serious’ and have the ‘real’ problems, whereas some studies have found that the mortality rates are actually highest for those who have a mixed condition. These people may not appear particularly underweight or unwell and as a result may not be taken very seriously. When resources are scarce, these are not the people who find themselves prioritised for treatment. The common myth is that people with eating disorders are vain young women who need to wake up to themselves. The reality is that anyone can struggle with disordered eating. The shame around these issues mean that most people struggle in secret, they feel deeply distressed, they lie to those closest to them and find their relationships cracking, they are infuriated with their own ‘weakness’, they internalise all the cultural myths about being weak, selfish, self-involved, vain, and useless, and they find themselves struggling in quicksand and going down.

I haven’t come across one ‘classic’ presentation of a person with an eating disorder in my work. I’ve come across a whole range of reasons people find themselves struggling with these issues. Most of us at some time in our lives will find ourselves struggling to maintain a healthy relationship with food. For most of us, fortunately, this will be fleeting. We’ll struggle for awhile then settle back into good routines again. 

For some of us, we get stuck. We get stuck in different patterns and for different reasons. Some of us are deeply concerned about weight gain and desperate to be thin. Some of us have severe food issues but don’t own a set of scales or count calories. There are many different ways that an eating disorder can start, and many different reasons people can find themselves having struggles with food. Distress in areas like body image isn’t always in play, and it’s a terrible dis-service to people to not believe them – or have anything to offer them, if their food issues have a different cause. Here are some commons reasons people can have major issues with food:

  • Body issues such as a desperate fear of gaining weight, pregnancy, menstruation, onset of puberty, and so on. These can be very complex and arise out of other struggles with life, relationships, and self.
  • Obsessive compulsive issues, for example around issues with germs, or extreme religious fasting.
  • Developmental or neurological challenges, for example only eating foods or a certain colour, or having nutritionally limiting requirements about texture or patterns of eating.
  • Psychotic issues, eg refusing to eat for fear food has been poisoned, or contains microchips.
  • Pica – the appetite for non-food substances such as dirt.
  • Mania changing the appetite. Some people eat voraciously when manic and do not feel full. Others forget about eating entirely. Some people do a bit of both in a binge starve cycle.
  • Depression changing the appetite – see mania.
  • Anxiety issues. When someone is afraid, the body goes into ‘fight or flight mode’ and directs energy away from non essential areas like digestion. People with chronic anxiety may find they are not hungry, have dry mouth or heartburn, and feel sick or involuntarily purge if they make themselves eat.
  • Dissociation issues. Chronic dissociation can blunt sensations such as hunger. People may not dislike the idea of food, they may simply be unable to feel hungry and forget to eat. It can also blunt the sensation of fullness so people may overeat or binge. For some people overeating or starving to the point of pain triggers dissociation in a way that is soothing.
  • Multiplicity issues. Some parts may not ever eat, so if they are out for a long time the body starves. Some people have difficulty with many parts coming out over the day and all of them eating, or none of them eating. It can be difficult to coordinate things like food intake if there’s a lot of switching and a lack of communication or co consciousness.
  • Self harm issues. Binging or starving to the point of pain is a way some people inflict pain on themselves. Denial of food or forcing unpleasant purging can be a method of punishment or self torture.
  • Abuse issues. Some people disconnect from their bodies following abuse and find the idea of caring for it and feeding it appropriately very alien and difficult. Sometimes food is part of abusive behaviour or strict punishments, where it is withheld, or a child is forced to eat when they don’t want to, or forced to eat food they dislike, overly hot or unpleasant food, or non food items. This can lead to enduring patterns and problems with food.
  • Addiction issues – for some people food issues are part of a broader pattern of addiction and difficulty with regulating impulses.
  • Drug issues – many prescription and recreational drugs alter the appetite or metabolism.
  • Social issues such as isolation, bullying, or domestic violence can disrupt healthy eating patterns and a good relationship with yourself and your body, or can lead to extreme weight management as a perceived solution eg. a preteen boy teased for being chubby may focus on starving and weight loss as a way of preventing bullying and gaining social acceptance.
  • Grief often changes eating patterns for a while. Some people go on to struggle with food or their body in the longer term.
  • Health problems – any number of physical conditions can affect your appetite, energy, metabolism, sleep patterns, and digestive health! Physical conditions can also link into other issues, so what started as vomiting due to Irritable Bowel Syndrome, may become purging as a way to manage chronic anxiety. Nausea, pain, digestive problems and appetite changes should always be investigated rather than assumed to be psychological.
  • Psychosomatic distress, where food or digestive problems are part of a bigger picture of emotional distress, for example involuntary purging that settles down once other major emotional stress is reduced.
  • Attachment issues. For example children who have experienced huge stress such as being moved into the foster care system may have an unusual relationship with food, stealing or hoarding it, refusing to eat when watched, keeping food that has gone bad, or binging when food is available.

These difficulties can also tangle together, so someone may be struggling with a combination of thyroid issues, a recent bereavement, and long term self harm issues, all of which is presenting as disordered eating. The most useful approaches for some of these concerns is quite different from others – there is no one size fits all cure. But having said that, my experience has been that the basics behind the Recovery Model and Trauma-Informed Care were a good fit for most everyone no matter where they were coming from. People were all different – some were in denial about their food intake and I spoke with deeply distressed family or friends instead. Others were very aware of how wrong things had gone for them and desperate to find a way out. Some people were at the start of their struggles, others had been fighting a war for years. People wanted to be heard, and to be treated with respect. Those who were not struggling with body issues were desperate for someone to believe them that weight was not their focus. People needed to hear that they were not weak, vain, or pathetic. They needed to hear that there was not one way out of an eating disorder, but that there is a way out!

I asked a question of almost everyone I was in contact with in my role as an Eating Disorder Peer Worker, which was – “Have you ever met anyone who has recovered from an eating disorder?” Almost everyone had not. To me, this is huge. People need to see that other people have recovered. We need to be able to meet them, read about them, learn from them. We need to see there are roads out, and not one road but many! We need to be given the freedom to try different roads, different approaches, techniques, and frameworks so we can find our own good fit. We need to talk to people who get it. We need a way out of shame and isolation.

We really do deserve better. We deserve easy to access, good quality supports that understand issues with food can be complex and arise for many different reasons. We deserve clear information about these reasons, access to peers in a safe and supportive way, and the opportunity to try different approaches. I’m frustrated and distressed that this is not the situation we are in, in large part I believe because the community perception, and therefore the perception of funding bodies, are two commonly believed myths – that eating disorders are just about vanity, and that people with eating disorders never get better anyway so there’s no point in funding services. Rubbish!

If you or someone you care about has an eating disorder, I’m sorry. You deserve a lot better. But, there is hope. All over the world, people are navigating their distress without amazing services. People who hear voices are escaping the clutches of hospitals and talking to each on the internet about how to cope instead. People with PTSD are running their own support groups. People with sensory issues as part of mild autism are discovering they’re not alone. You can seek therapy privately, read books, reach out to recovered/recovering peer workers, and fumble your way through to your own needs and solutions. You are not alone. You have nothing to be ashamed of. You are stronger than you realise. You deserve a good life. You can recover.

Reporting a suicide threat on Facebook

/ Sarah K Reece / Leave a comment
I’ve just had to swing into action and find out what to do when someone posts on Facebook that they have overdosed and are dying. I had crept into bed, written in my journal, rescued Tonks from his own tiny cat collar when he managed to get his bottom jaw under it, had a mug of warm milk with cinnamon and honey, and was just closing down my light on my phone when it popped up in my feed. Now I’m out in the lounge on my computer, feet frozen, sticky with sweat in my dressing gown, exhausted beyond bearing, and too dazed to sleep.

I’m the sole admin for the DI open group on facebook, which currently has about 150 members… between that at my personal friends most of whom have mental health stuff and some of whom are going through seriously nasty crap, this was bound to happen sometime.

In case it does happen to you, here’s the link to report it urgently to facebook: https://www.facebook.com/help/contact/305410456169423

You can also call people, in Australia try

  • Lifeline 13 11 14 (free from landlines and mobiles)
  • ACIS 13 14 65 for mental health emergencies
  • Kids Helpline 1800 55 1800 (for young people aged 5 to 25)
  • Or 000 for an ambulance if you know the person is in life threatening danger and where they are

In America they have the suicide prevention lifeline on 1800 273 8255. If the person has posted stuff about suicide on a different type of website eg tumblr, here’s links to report to other emergency suicidal content people: http://www.suicidepreventionlifeline.org/GetHelp/Online

If you’re affected by suicide – either yourself or by someone else and need to talk, I’ve also found the suicide call-back service helpful – obviously these ones aren’t for immediate crisis stuff like this. http://www.suicidecallbackservice.org.au

So, I’ve done what I can. It’s been a long day. I’m still very sick. Some of my friends are going through terrible things and my heart is broken for them. Other things are wonderful, like my dear sister returning from a long stay overseas, we were able to catch up a little tonight for dinner and I was so happy to see her. I haven’t slept much in days, my system has been a riot with so much going on, and the internal noise is almost unbearable as we all start to feel a little better and chatter away to each other… sleep is hard to come by.

I had hopes for tonight, until this.

It’s now 5.30am. I’ve just had a gentle conversation with a chap on lifeline… sometimes it’s just unbearable, I hear so many terrible stories of pain and suffering and because of confidentiality, they all stay with me, locked inside… sometimes it’s unbearable not having the power to make things right, to make doctors care for suicidal patients they are throwing out of hospital, to take away stigma and discrimination and violence and cruelty and poverty and loss… to be left simply with the role of being a witness, of standing vigil and saying – I see it, and it is not right, and I see that you suffer, and that is not right… to not turn aside or pretend or downplay or victim blame, but to bear to see and hear and know of these things and to stand with the people that endure them or are broken by them…

…It is wrong and I cannot make it right but I will bear witness and I will remember…

…and then to somehow let it all go, to let the pain flow through me and past me, to let go of the rage that makes me want to wake the world from their beds and scream at them – can’t you see what is happening here? How can you sleep when people are suffering like this? How can you be at peace when such injustice is being done? There’s a rage in me that wants to torch buildings and set trees burning as beacons in the night. My people are being destroyed, they are suffering, they are humiliated, abused, powerless, they are dying. We need to hear their stories. We need to know the results of our indifference, the ends of the systems and structures we create.

I feel sick.

I must stand strong, and I must let go.

There’s a sad, sad song in my soul tonight. For all the ones that life ran over, all their bright dreams turned to dust, their hopes ashes, bitterness and humiliation and grief in the night, the little people who did not have power to make it better or to have a voice or even to speak the things that went wrong for them, the way life became brutal, stuck in the throat, clawed their breath. For all the ones who find ourselves on the shores, watching other people’s ships sinking, we who love, and grieve, and despair, we who weep and watch, who mourn with them and feel their heartache in our hearts and carry their sorrows like black crows on our souls, we who remember their ancient joys and hopes with bitterness, long after they have passed. We who are witness, bound by love to not turn away. We who carry burdens of guilt and longing and regret, with tears that never entirely stop flowing, hands wrinkled and crusted with salt, gifts of love in our mouths like bright oranges, like birds that take flight over storms. We know that love is everything and that love is also not always enough.

There’s a sad song in my soul tonight for how hard life can be, how lonely and painful and desolate, and this is a truth that nothing else changes, all the joy and hope and brightness in the world does not alter even a little, a shadow that lays beneath all hope, a river that runs under rock. Life is beautiful and life is anguish. This is a truth in my left hand and a truth in my right.

There’s a sad song in me tonight, if I sing it, if I let myself cry, if I can but reach out and touch it, it may sing me to sleep, it may sweep me down that dark river to some kind of peace.

Out of Despair 6 – Dreams and Tragedy

/ Sarah K Reece / Leave a comment

We have dreamed large and been shattered when the dreams died. I have learned things I cannot unlearn, like searing coals that have left deep scars. Love is not enough. Life is cruel. People do not get as they deserve. Sometimes the violent prosper and the kind suffer. Sometimes you take big risks and lose it all. Death crushes dreams, sickness brings a grief that isolates utterly. We are vulnerable little bags of blood and bones and our dreams are soap bubbles and glass. Life turns on a dime.

But without dreams, there is no life, no hope, no abundance, no meaning, no joy. Without risk, we have nothing.

Nothing’s safe, except what we put at risk – Le Guin

I understand this well, it’s how I’ve stayed alive when I’ve lost so much faith in the world. But this year, it was not enough. Suddenly we’re dreaming big dreams, like having a child. The kind where I can’t imagine surviving tragedy. Death, illness, loss, all paralyzing me with terror. In the face of these nightmares, a dead child, a dead partner, court taking child from ‘mentally ill’ mother, homophobia, violence, homelessness, loss… I am like a rat in a cage, running frantically but there’s no way out. There’s no way to survive these things.

And that’s the key, there’s no way for your world to continue. It ends. What I’m doing now – this retreat, this bizarre breakdown – the letting go, it’s the letting go of a world that has ended. And you wait, you listen, you follow the small voices, the needs of the soul. And you find another path entirely, one that works for you, with what you have. So if Rose and I lose a child and it tears us apart… we sit and we cry and we say – love, love, this pain is too great, our grief is too different. Let us be free to grieve apart. If she dies and all the world we’d created together is suddenly hollow without her, I retreat, I listen, and I find a new path. Perhaps I leave the home we’d made, I buy a caravan, the child and I go traveling with the market folk, at night we watch the moon.

We are not on the railway tracks. We are free to grieve the death of dreams and make room to have new dreams. So tragedy can be faced, the inevitability of loss can be borne.

The world of structure is important. It is not wrong. It is necessary. It supports my life. Too much of it kills me. Too much of it would have me living a ‘successful’ life, the ‘recovered’ patient, doing things that have long lost meaning for me, empty and lost in my heart. This other wild way is capricious and impulsive and need driven and full of hidden mystery and meaning. People make a lot of sacrifices in their lives hoping that success will make them feel the way I feel when I’m up a tree in the moonlight full of the wonder of my world. These two things should not be divided as they are in my life and my head. They are a whole. The one supports the other. Structure follows dreaming, sustains it, makes sure there is food in the cupboard and a safe place to sleep.

Letting go frees me to dream of different things to what I have known. I have fibromyalgia, a chronic pain condition that flares and settles and flares again. I can expect that there will be days that I do not get out of bed – as there are now. If I wait until I’m well to be a mother, I will not get the chance. But the despair in my heart when I’ve realised that there will be days Mum doesn’t get out of bed had overwhelmed me. My mother got out of bed even if she was just out of hospital. She’s my whole world of what it is to be a mother. I will fall short. I will be one of those mothers.

So I grieve that vision of motherhood, and let it go. I will reach out to mothers who have disabilities and illnesses. I will find a new vision, where who and how I am, is enough. Where what I am able to offer is worthwhile. I will have a different family, a different life, a different experience of being a mother. This is sad, and it is also freeing. Let go of what does not work, and find something that speaks to me. Enough suffering. Enough diligence. Enough failure.

Instead, the most barely understood glimpse of a life where we live in harmony, where passion and diligence meet, space for dark and light, the strongest and the most vulnerable. Room for madness, permission not to fit in or hide, connection to soul.

It’s a rich life I’ve led. So many experiences, so much I’ve learned. I’ve walked many different worlds, seen so much (attack ships on fire off the shoulder of Orion). It’s an amazing thing to be alive.

Out of Despair Part 1 – Language is Powerful

Part 2 – Frameworks Free and Bind

Part 3 – The Tribe

Part 4 – The Railway Tracks

Part 5 – The Cave Dwellers and the Golden Light

Out of Despair 4 – The Railway Tracks

/ Sarah K Reece / Leave a comment

Let me tell you about something I call the railway tracks. It is something I have struggled with for many, many years. I get stuck. I plan my life, and those plans are like tracks laid out before me. In good times, they are a guide. I stick to them, but I can also get off them, make detours, follow impulses, go where the moon calls me. In bad times, I am trapped by them, no deviation, no way out. Rewind 5 years. I’ve driven into the city to go to a church service that evening. I’m trying to make new friends. I know I’m multiple but I’ve told almost no one. I’m exploring an idea that if we don’t switch, if we take the same part to church each time, we might have a better chance at making friends. It’s sort of working but also not. Driving home late at night, there’s a sudden yearning inside to go home via the beach instead. The night is cold and clear and the moon is bright silver and I’m terribly lonely and lost. I want to do this so badly, but I can’t. The plan was to go to church and come home. The beach isn’t in the diary, isn’t on the schedule. I fight very hard but I cannot make myself drive there. I go home instead. This is the railway tracks.

At the time I dig into it enough to realise that I suffered from it because it supported my functioning in another way. I didn’t exemplify the chaos that is common in someone who has parts, because we all stuck to an agreed schedule. The downside was this lack of freedom to be spontaneous. That was upsetting but an acceptable trade off. Over time, the schedule – and this whole approach, the group being bound to decisions made previously, a rigid adherence to agreements, inflexibility, feeling trapped and locked in, has degenerated into severe depression. Hence, the letting go of it all, the following of small voices, listening to immediate needs and wants. The tracks are suddenly gone. The sense of living my life by constantly bullying myself into doing things I desperately did not want to do, being so far outside of my comfort zone I couldn’t remember the last time I had seen it, of holding myself down, holding my hand in the fire, holding the feelings at bay, that has gone. The boulders on my heart have lifted. The despair is still there, the screaming pain, the loneliness, the scars, the terror, the years of torment and loss. But the crushing destruction of motivation, initiative, emotion, that has gone, for now at least. The tracks are gone. I can do what I wish, make impulse decisions. Turn right instead of left. Stand at the edge of the world and watch the ships.

Suddenly I’m walking Zoe because I want to, because I love her, because I love going out in the night and the cold where I have the world to myself, not because I have to, not out of guilt or obligation.

Suddenly I’m realising that this freedom is the key to attachment, to connection, to love. That this isn’t just how I want to look after my dog, it’s the kind of parent I want to be. Connected. Let off the hook for not being perfect. Working with what I have. It’s the kind of partner, friend, person, I want to be.

Stronger members of my system have allowed themselves to be bound by the needs and fears of more vulnerable members. It’s been critical for cohesion. We’ve been very good at presenting only one face to the world. We’re united by a set of values, and the primary need to survive. This leashing also strips us of much of our strength, passion, fire, and zest for life. You cannot dream when your dreamers are locked in stone. There’s a cold war between those who hope and those who despair. We are changing this. We are loosening leashes. I don’t know what will happen. That’s precisely the frightening and wonderful thing. I don’t know what my future holds.

Out of Despair Part 1 – Language is Powerful

Part 2 – Frameworks Free and Bind

Part 3 – The Tribe

Part 5 – The Cave Dwellers and the Golden Light

Out of Despair 3 – The Tribe

/ Sarah K Reece / Leave a comment

This change of approach is everywhere in my life at the moment. I have an analogy. Picture a tribe of people, living together. Now bomb the region. Nuclear! Wasteland, devastation, loss. The tribe are alive but wounded. Some are sick, some are weak, some are young. They band together to get out of the wasteland. The journey is very, very long. They don’t know how long it will take. Somewhere it must end, somewhere there must be clean water and trees. It’s an act of faith to go on, to keep believing that all the world is not like this. As they journey, some members cannot go on. They become exhausted, or too wounded, or they die. The tribe buries them, or leaves them in caves or burrows. They promise that when they find a good place, they will return. They keep on. Sometimes one member leads, sometimes another. Sometimes they fight. They learn a lot about living together and looking after each other. They leave a trail behind them, footsteps in blood, bodies under hummocks of sand and ash.

The tribe is smaller now, leaner, wiser, older. They find the edge of the wastes, there is grass again, water, food. They can make a home. They can make a life. They can sleep indoors.

The whole world of mental health now says to me – set up home. Focus on the present moment. Be happy. Be well.

My wastes are full of wailing, angry ghosts. I’m haunted by who I used to be. I owe debts. I’ve made promises.

So I look sick instead of successful, as I go back to the burrows and rouse them, the lonely, wounded, angry ones, and promise them the world now has trees in it. As I go and wake my dead, gather the bones and bring life back into them. It looks like depression. It looks like crashing, like getting sick. I don’t look like a successful, recovered patient.

But there’s life again! There’s many voices. There’s feeling in my skin. Where my routines and plans had become empty, there’s passion. Where I’ve closed my ears to the cries and done what needed to be done, now is a time to open my ears, to sit and listen, to make a fire, to share bread, to tell the stories, to bring back together what has been divided. Dark and light, old and young, bold and timid, hope and despair, conventional and misfit, to be a tribe again, to each have a voice. We all need to have a voice to dream of a new future for us all.

And here comes the next part – the dreaming. It cannot be something that suits one, or a few. Parenthood must not be something only one or two desire. A home is not a home unless we all belong there, strange as we are. If the dark wild ones need trees to climb there must be trees. We need all of us to dream, to yearn, to share in a future together.

Without all the voices we have no balance. We are divided, unstable, without constraint. The human spirit is made to be pulled in different directions, this is our pain and our beauty, we find balance between conflicting needs. I am divided, we must work together for there to be balance, wholeness, real hope. There has been rising hope and despair, in conflict, this year. To undo the conflict and find harmony, we must undo the framework.

Out of Despair Part 1 – Language is Powerful

Part 2 – Frameworks Free and Bind

Part 4 – The Railway Tracks

Out of Despair 5 – The Cave Dwellers and the Golden Light

/ Sarah K Reece / Leave a comment

Let me tell you another story. There is a grey world, without colour, without trees or living things. Wounded people live in caves, scratching out life from a bare and inhospitable world. Beneath the crust of this world, is a golden light, powerful and full of urgent energy. The cave dwellers can hear it and feel it rising. They fear it greatly, it haunts them. They foresee it bursting through the surface of their world, tearing apart homes and safe burrows, destroying the world they have known. They do everything they can to keep it at bay.

The light is the raw stuff of dreams, of hope, of life force. It seeks the surface with the determination of a plant, with the ferocity of a volcano.There is so much fear here, so much loss.

What if it doesn’t have to stay this way? What if the golden light is exactly what the grey world needs to come back to life, to be abundant and vibrant and nourishing? What if the cave dwellers, instead of living in fear of it, can be the stewards of it? Instead of being haunted by it, they can live in the promise of its song. What if they are the ones who mine into the rock for it? Who guide it into safe passages where it does not destroy? Who direct it so that the changes are good, thoughtful, wise ones? What is there is harmony instead of threat?

Narrative therapy and focusing techniques are something I’ve been exploring, making space to ask questions of myself and find new ways to think about my world, new ways to frame my stories. This is powerful for me.

With this shift comes also the power to face the certainty of loss. I have been terrified of my dreamers, those who fly, who take risks, who rock boats.

Out of Despair Part 1 – Language is Powerful

Part 2 – Frameworks Free and Bind

Part 3 – The Tribe

Part 4 – The Railway Tracks

Part 6 – Dreams and Tragedy

Out of Despair 2 – Frameworks free and bind

/ Sarah K Reece / Leave a comment
I’ve been doing a big shift in frameworks lately. I was conceiving of my severe bouts of depression and the fibro flare this year as an indication I was doing something wrong. I couldn’t work out what it was, what I needed, where I’d stuffed up. Framing the problem like this was immobilizing me.The mental health framework was offering me another idea, that of ‘depression’. It was presented as a mysterious, incomprehensible illness, striking randomly without warning, disabling and destroying. One you cannot fight, cannot understand. There are meds, there is waiting it out. That is all. This bogeyman was preying on my mind. It loomed larger and larger in my thoughts, bringing with it an incapacitating terror. What if nothing I try works? What if this is part of my life now? What if I never feel better?

These are the frameworks we give to people with psychosis; that it is insanity, incomprehensible, impossible to interact with. Pointless to attempt to understand. Endure. Take your meds. Endure. Hope. Lower your expectations. Don’t listen to the voices.

(I’m not anti meds. You do what works. I work a lot with people they don’t work for. There needs to be more than one approach.)

The framing of the problem was killing me. I tried turning it all around. What if getting sick and being depressed doesn’t mean I’ve done anything wrong? What if I’ve made excellent choices in difficult circumstances? What if my circumstances have changed now and the approach I’ve been using isn’t working anymore? What if I stop everything, let go of all of it, and go back to listening to myself? This letting go has been the most miraculous thing. My heart is singing again. I feel alive, my emotional connections have returned. There’s certainty and focus and hope, where there was terror, confusion, and despair. Language has power. You cannot find the answer when you’re asking a question that don’t permit that answer.

I’m ignoring the bogeyman of ‘Depression’. I’m embracing the idea of letting go, of a retreat, of a cocoon, to build something new. To reconnect with the heart of me.

Take friends. I’ve been a desperately lonely child and young person. I craved human connection and contact, dreamed about having friends I could hug, talk to about things that scared me, people who would support me when I was hurting, remember my birthday, be happy to see me, miss me when I was away. I’ve carefully worked on friendship networks over years and had something catastrophic – like PTSD – suddenly open a Gap I can’t bridge and take them all away. My multiplicity has deeply and strangely affected my relationships. I have trouble building relationships with parts of other, so called normal people, they usually keep buried. I also tended to push relationships hard. There was a big hole at the middle of my life, where very close relationships were meant to be. I took wonderful friendships and destroyed them by trying to make them closer than they were ever going to be. It’s like there was a black hole in the middle of me, and I couldn’t stop it drawing people inwards to something more personal, vulnerable, and intense, than they wanted. So I had nothing instead.

Several years I realised that this loneliness, this yearning need, was killing my friendships. So I disconnected from it. I changed focus and deliberately started seeking out acquaintances. From those, I started to make some slightly more close friends, and so on. I’ve reached a place now where I have a whole network full of really awesome people, more than I can keep up with. For a weird, lonely, mentally ill freak, I’ve been astonishingly successful at rebuilding social support. And I’ve hit a wall, where I can’t let anyone closer.

Because this approach is goal-oriented, top-down, intellectual, disconnected from that lonely, yearning, intense heart of me. Shielding people from it has been effective, it’s helped me build good caring relationships where I don’t bleed all over them, where I’m not raw, prickly, angry, scary, or in their face, most of the time. It’s helped me put my best foot forwards. But it also keeps at bay those I have come to love, walls them off from my vulnerability, cuts me off from my own yearning. So the time has come to let go of one approach, and grasp another.

Out of Despair Part 1 – Language is Powerful

Out of Despair Part 3 – The Tribe

Out of Despair 1 – Language is Powerful

/ Sarah K Reece / Leave a comment

I’ve undergone a massive change in my mental landscape in the past month. Against a background of a bad flare in my chronic pain condition, and severe bouts of my first experiences of depression, I’ve finally found a way through. It’s difficult to communicate but I wanted to share. I’ve tried to put my thoughts in order and broken them up into 6 separate posts to make it easier to read and pick out only the bits you might useful. I hope it might be helpful to someone.

So many of my experiences in life have been so different, so alien and without words, I’ve struggled to even think about them in a coherent way, let alone communicate about them to other people. I’ve found lose frameworks and sketchy lexicons to at least be able to have a dialogue with my selves about my life. They’ve been useful but also limiting – as frameworks tend to be. So for example, as a young person, functioning in a way entirely differently from all my peers, I needed ways to describe and explain this to myself. One of the concepts I came up with is that I was a poet and they were not. This was, generally speaking, true. It also encompassed other ideas – that I was a highly creative person in a non-creative environment where sports was the focus. It spoke to a sensitive, observant nature. It had connotations far beyond that of a wordsmith – poet, and became instead Poet – a term that encompassed someone profoundly out of step with contemporaries, who spent much time up trees, on roofs, and in rivers. Who dressed primarily in velvet when given a choice, wore a knife on a belt when at home, cried most days, was desperately lonely, and carried around a journal like it was her own soul.

It was startling to meet other poets and discover that while most are misfits in some way, they are not necessarily misfits in the same way as I was. I was using the term to encompass ideas that did, and did not fit within it.

When I was first presented with the idea of dissociation it seemed primitive to me. I made no connection at all between the clinical terminology and my own experiences. I had become so accustomed to living a double life – the things we speak of and the things we do not, that starting to dig into my own fractured state in therapy deeply troubled me. I have come to accept that dissociation is the term for what I experience – a division of personality into separate parts, and at times a tenuous connection with ‘reality’. But there’s more to the story than this. Multiplicity is a big part of what makes me different. Being queer is another part. Odd developmental patterns is another – I was far ahead of my peers in some areas as a child/teen, and very behind in others. Being highly creative instantly put me at odds with systems, structures, routines, and traditions. Being highly traumatised changed how I felt, thought, and reacted. What made me feel different, and be identified by my peers as different, is far more complex than a mental illness. And to collapse some of my differences and challenges under the framework of mental illness does them a disservice.

Language is important. It shapes how we think. It provides frameworks, and frameworks are both useful and limiting. They can also be incomplete, unsophisticated, erroneous. The first times as a teenager that I went along to poetry gatherings I was deeply disappointed. I had been hoping to find people like me. People full of yearning and loneliness, who were deeply moved by life and had made the great effort to find words for experiences that defied language. People who craved connection and intensity. I felt instead, lost, lonely, confused. My frameworks were insufficient. ‘Poet’ was part of the picture but not the whole picture.

Dissociation and multiplicity are part of the picture but not the whole picture. The language of social workers and psychologists reminds me of butterfly collectors, who kill what they revere. Who have board of lifeless wings with which they cannot possibly understand the glory of flight. When lost for words, I always return to poetry. There are things you cannot understand without experiencing them as they are. Science turns on the lights and drags up the strange creatures from the deeps. It’s valuable. But it’s also limited.

Some days the single most lethal idea we’ve ever come up with, is that we are normal people, leading ordinary lives. The world is not what we think it is. Our ideas about it are a structure, a framework we’ve laid over it, to make sense of it and understand it. They are not ‘truth’, and they are not ‘reality’. Rejecting the ideas of your own culture does not mean you are rejecting reality. Being able to step outside of the roles you fill in your life can be a terrifying experience. It can also be a way of touching your soul.

Language is precious. I’m frustrated by people who say that language destroys what it seeks to describe, who believe that life cannot be communicated about. It is imperfect, which is why it should not be static. It is fluid, we change it, we add new words, we change the meanings of words, we shift it around. We lose words, we reclaim words – like queer, like mad, like freak.

I’m still partly a child. Literally and metaphorically. I’m hypersensitive, at times profoundly insecure, confused by the world. I lack filters. When I read a book or watch a movie, I live in it. I cry, I love, I feel deeply for the characters. They have been my friends when I didn’t have any. I learn quickly, the way a child does, soaking up information, mimicking instructions. The other day, I switched to a part who’s about 13. I was co conscious and could see and feel what she did. It was like peeling back so many years of my life and tossing them away for a night. Memories of those early years were as strong as a yesterday. The world shifted, shadows deepened, all the words meant something different to me. I was light as air, laughing, I was free in the night, full of mischief and uncertainty. When I’m near the beach, a poet often comes out, full of lonely yearning. She is much younger, she stands by the water at the edge of the world and watches the ships out at sea. I used to spend a lot of time in Salisbury. One of the shopping complexes has been build around an old graveyard. Between council buildings, the library, cinema, grocery store, there is a tiny plot of gravestones. Everyone walks around them as if they are not there. I used to stand among them, memorizing the names. Noticing the babies who lived only hours or days, the women who died after long, long lives. We walk around these things as if they are not there. We get stuck in our frameworks and cannot see beyond them or think beyond them. I love my little yearning girl who lives by the sea. To call her a part of my mental illness is to miss entirely who she is and what she means to me. It is to obscure and deny.

Language can kill you. After being homeless years ago, I moved into a borrowed caravan and a caravan park. It was a time of absolutely disarray in my life, every plan I’d ever made or hope I’d ever had was utterly disrupted. I was chronically physically unwell and in constant pain. My marriage had collapsed, my friendship networks were gone, my life had burned to the ground. I was living among some of the poorest members of our community.

I found myself  in the ‘white trash’ bracket of our culture. People were confused, uncomfortable, curious, weirdly sympathetic. I tried to get involved in life again but found that my address held me back. I offered to help raise a puppy for a local guide dog organisation. I asked at the information session if living in a caravan park – a pet friendly one that allowed small fenced areas around each van – would be an issue. They said of course not! I went through the training and the home inspection and failed. Someone higher up the hierarchy I’d never met had decided that a caravan was ‘not an appropriate environment for our expensive puppies’. I wasn’t really a person anymore.

That could have crushed me. I felt the impact of it, the weight of it, on my spirit. I finally turned it around by tapping into the gypsy culture in my mind. Finding a different way to see my situation, different words to use about it. Now that I’m living in a unit, I miss my van some nights. I like to sleep outdoors, to feel the rain and hear the wind and watch the moon rise. I found new words, ones that didn’t cut into me.

If dissociation is the word we’re using to describe what I feel when I’m walking through the frameworks of our culture and finding my own language instead, then it can’t be only negative, can’t be ‘illness’. It’s also freedom. There is a tremendous power in being able to define ourselves and our own lives in ways that are meaningful to us.

Out of Despair Part 2 – Frameworks Free and Bind

Letting go

/ Sarah K Reece / Leave a comment

I’ve had a surprisingly okay… even going hesitantly to day ‘good’… couple of days. Yesterday, I went off to counselling appointment on about 3 hours sleep and no breakfast. Wound up switching appointments with someone in need and so found myself there a couple of hours early. I sat in the library and read some interesting books. One on the relationship between being queer and depression, which was a welcome counterpoint to the ‘I came out and all my problems went away’ common narrative that’s been dogging me a bit lately. The other I’ve borrowed to digest more slowly; a book on narrative therapy that spoke deeply to me. I’ve been playing over the past couple of days with completely reframing my situation. Recently I thought about my common belief – things are chaotic so I must be doing something wrong. I found myself wondering if in fact I am I doing everything ‘right’ in a difficult situation. The thought has stayed with me.

After the session I treated myself to a large chai latte and a sandwich at my favourite nearby cafe. With some filched scrap paper and a pen I caught at the thoughts swirling around inside me and sketched ideas of what might be going on with me, why I’m sick again, what I need to do about it. A line from a book on psychosis came to me – “Is it a breakdown, or a breakthrough?” I had a mental image of a horse growing from foal to stallion, and another of a caterpillar working hard in a cocoon. Sometimes growth is a natural development of what you have already been doing. Sometimes it means pulling everything apart and putting it all back together again. I asked myself if my distress was completely internal, or mostly being caused by my new inability to maintain my involvement in things in my life or to meet my expectations of myself. What happens if I let it go?

What happens if I accept that for the moment, I am closed for refurbishing?

I have used a framework, a series of approaches and values over the past few years to guide me out of a very lonely and desolate place. I’ve driven myself very hard, constantly forced myself to do things I found very difficult, reached out for anything and everything that interested me to learn about, joined every group, offered every assistance, made friends with everyone, and PUSHED so hard to make my life different.

This isn’t working anymore. I need to consolidate what I’ve gained now. I can’t keep expanding my responsibilities, networks, study, projects. I need more time to contemplate, to find new ways to approach life. I need new frameworks to support me. I need time to adapt to the massive shifts in what I’m working towards. Putting motherhood back in the picture as a possibility shakes everything up. It’s something I’ve wanted since I was 15. It’s also something that only last year, with fertility issues and approaching 30, I’d started reading books on grieving your infertility and letting go of that dream. Everything is changing and I’m struggling to keep up. I’m struggling to care for all my parts in a massively shifting world. I’m struggling to hear that tiny voice of the soul that helps me yearn towards those things that are truly important, those things that nurture me, all of us.

Maybe the depression, the getting sick, the distress of it all doesn’t actually mean anything is wrong.

I stopped off on the way home and browsed some shops. I bought a very nice pair of shoes from the salvos. I came home and took Zoe out to the dog park – not because I had to but because I wanted to. She loved it. I came home and looked up more interesting ideas about face painting. I made a decision about how I’m going to display photographs of my designs at public events. I had dinner and chocolate icecream and watched tv and did some of the dishes. Rose came by after a late shift at work and I painted her. I’ve been practicing my little white flowers and they are nearly perfect now. I was going to work on inks today but I tuned in to myself and noticed that I was feeling disappointed because I really wanted to body paint instead. I followed that feeling.

I’m thinking of getting a kitten. A friend of Rose has kittens they need to find homes for. There’s many reasons not to. But I’m home a lot, and in pain, and another cat would be wonderful company. I’m also considering signing up to foster dogs until homes can be found for them, to provide Zoe with some friends to play with. She loves other dogs so very much. I’d like to garden but the fibro pain is too severe.

I’ve read aloud case studies from the book on narrative therapy to Rose, and cried through people finding new ways to think of themselves – instead of as hopeless failures. I’m letting it all sit and filter. I’ve been involved in planning a party with a friend. I’ve got excited about buying UV reactive face paints to use at a goth nightclub next month. I’ve crept gently into bed with a glass of warm milk with honey and cinnamon, and a good book by Terry Pratchett.

I’m not in agony. There’s turmoil and unbalance and storms rumbling, but no screaming in my head. I’m thankful. I’m moving slowly, reaching out for help, withdrawing from obligations. And yesterday was a good, gentle, thoughtful day. Today was similar. I feel less destroyed, less overwhelmed. Letting go and tuning back in to that small voice. At midnight I took Zoe out to a local park, and stood up on the playground, looking out over the lawn like a green lake, and the structure beneath me a boat sailing smoothly upon it. The wind was up, cold on my skin and singing sweetly in the leaves of the trees. It feels right. It feels like coming home.

Small Voices

/ Sarah K Reece / Leave a comment

This is a reserve I discovered with Zoe a couple of days ago. I took washing down to the laundromat and went exploring with her while we waited for it. There were a couple of ovals with guys playing soccer or practicing their skills. It was dark and wet, we walked in the shadows at the edges of all these strangers lives, the houses with curtains pulled shut and glowing, gardens looming under streetlights, children’s toys left discarded in the yards. A possum ran across our path, from one tree to another. It’s another world, for me. Not just my neighbourhood at night, but a different place entirely. Different parts of me come out, different rules apply. The trees breathe, the moonlight sings on my skin. This is a place I knew intimately as a child, the world outside my window, behind the glass. The place the rain fell and the night had a scent like rain and earth and lilies.

This morning I wake thoughtful from strange and portentous dreams. I feel, deep inside, that call from my deeps, to find somewhere shadowed today, to find a different world and stretch my wings within it even if only for a moment. And also as I wake, returns to me the memory of lists, of things that must be done, to support my life. There’s a rickety complex of things that hold up my life, that stop me falling into destitution. A number of tasks that keep my world going, bills that need paying, food to prepare, arrangements for college and health and friends. So many needs.

The pull towards the shadows is a small one. One voice among many. Not the loudest or sharpest. Just a pull, a need, a drawing of my heart. It is the voice of my soul.

This morning it occurs to me that most of the voices get louder as the need grows stronger. I cannot do everything I have set out to do. Trying to keep house and make art and study and work, to connect with friends and care for my pets and look after my garden and keep my house. I constantly leave things undone, important things, like tax paperwork, like emails from friends I care deeply about, little things that cost me like books that must go back to the library like the need to buy more cat food or save for car repairs.

Most of the voices get louder as the need gets stronger. I don’t think the voice of my soul is like that. I think it gets softer as it gets weaker.

Constantly neglected and ignored, it fades. I wake restless less mornings. I stop hearing it. I forget about it. I get sicker. My heart feels old and dusty without moonlight to renew it. My candles lie disused. There is no pull in me towards shadows or poetry or other worlds. I stay in my little box, mouse in a wheel, running and running. I forget my name, my names, my other names that live in other worlds and drink the night and are renewed. I feel lost and empty and cannot remember why. When all falls silent in despair, there is no voice left for me to follow.

Maybe this one needs to be more sacred than the rest. Maybe instead you tune your ear to it, to the needs of it, the little pull inside, drawing you out of boxes, of lives, of worlds, and into a different place. Maybe each time you listen it becomes stronger, easier to hear, easier to follow. I remember that it was for me, that I would wake with the need to climb a tree, or find water, or with the song of a particular poem vibrating in my heart. I would stand in graveyards and cry, would creep towards ink and paint like they were blood and I’d been bled almost dry. I remember it being strong, and easy, a shining thread that led me out of labyrinths of other people’s makings, out of nightmare homes and schools that were like being trapped in someone else’s dark dreams.

I spend too long in the normal world, learning that language, speaking those words, playing those roles, responding to those names. I am becoming good at it, better than I was. I am learning to find places I fit better. But still I need to step away, to cross the glass and follow a different song. To be torn in two. Dual citizenship. To tune my ear to that small voice of longing and find strength and resolve to follow it sometimes, out of the day, out of my world, my name, my roles, and into the shadows, the other places, where I can eat the food, where I can breathe, where all the world speaks poetry. The light and dark of the moon. Where I find wholeness, self, possibly even god.