Dazed but loved

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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

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

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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This blog is official!

Whoo hoo! Google has discovered this blog! Rather excited it. I moved my 2 year old blog here, with all 650+ posts, in August when my blogger account crashed and locked me out for a fortnight. Then I decided to stay. The original blog is still running however because I discovered one small, but important details – every single backlink I’ve ever made (ie when I’ve written about multiplicity and provided an in text link to my page about that so that those who want to know more can easily find it) all point back to my old blog. I’m in the process of going through every single post, improving the formatting that’s been altered in the transfer, occasionally replacing a photo that’s gone missing, and fixing the backlinks so that they point to that post on this blog. It’s going to take me a little while!

Unfortunately, having the previous blog still listed on the net has penalised this blog – the duplicate content means that google initially treated this blog as a spam site, a valuable process designed to prevent buggers who steal all your content to create fake spam sites from getting higher up the search engine ranks than your real site. But, now that this site has been running for a couple of months and the old blog has delisted from search engines, things have been corrected. This site now shows up in google instead of the other one when people search for it. I had my first referral from google today. Yay!

The clean up process is definitely daunting… but on the other hand it’s been good to re-read. I do this with my own journals pretty regularly and I always learn a lot, gain a new perspective… Bear with me. 🙂

In other exciting news, I’ve added a ‘random post’ button. How awesome! Now that I’ve so much material online, I’m always looking for ways to make it easier to access relevant stuff. I’ve also started a couple of new, more specific topic categories such as multiplicity. On that note, if you’re looking for a good reader to keep up with your favourite blogs now that google reader is dead, I’ve been using feedly and really liking it.

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A year with Rose

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.

mUbNVVk-001

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

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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Home Base for Homeless People

So you have a friend who’s homeless, or one at risk. You can’t take them in at your place (for whatever reason). What can you do? There’s a whole lot of ways to help. One pretty easy thing you can do is to provide a home base. A lot of folks spend time travelling and backpacking and having a ball living a very transient lifestyle, and part of the thing that makes this fun instead of traumatising is that somewhere they have a home base where their stuff is kept safe. For most of us as younger people, this is a parent. There’s a spare room, a garage, or an attic stuffed with boxes of paraphernalia that’s really meaningful to us but which we don’t have to carry around. Most of us don’t even bring this stuff with us when we move out as students or young workers. Small units or share houses are not the best place for excess belongings, so they wait until we’re older and way more settled. Many of us also have things of great sentimental value that we don’t own but will probably inherit one day and will remember family members or great childhood events by. These all stay safe in the care of whoever currently owns them. Lastly, many travelers have their VIP documents stashed safely with someone who can look after them, scan and email them to us if we suddenly need them.

Treasure chest

Image courtesy of Roger rgbstock.com/gallery/rkirbycom

This home base is one of the things it’s easy to take for granted if you’ve always had it. Most people who are homeless do not. Anything they can’t carry is lost to them. Any items of sentimental value are left behind, there’s no extended family to just take over looking after the dog, there’s no security even for the things they are able to carry around. This loss is drastic, it hurts like hell. It’s part of the reason people are so reluctant to leave violent partners, it’s something abusive parents can hold over their children, it’s another Gap that opens up between happy adventurers and distressed homeless people.

Depending on your situation, you might be able to offer to look after their cat, to put some important paperwork in your filing cabinet, to keep their digital photo collection stashed on your computer, to keep some of their best clothes in a rack in your wardrobe, to have a box of food they can use as a pantry, to hold onto some precious jewelry. You can help them find cheap public lockers to stash shoes and a phone charger, or long term storage if they’re salvaged larger items. Things they can’t keep you can take photos of; kids sports trophies, a record collection, the cross stitch Nan made for them. Having a record can help when you have to let go of so much at once. There’s such a dislocation that looking through photos later can be something that helps to process it all, to link the old life and the new life together. There’s free cloud storage for digital photos through services like dropbox or google plus.

Homebase can also be about providing a little normality to an experience that is surreal and disconnected. Having someone round for a meal once a week, hanging out and watching tv together afterwards can be a routine that anchors them to a world where things are still safe and predictable. It can help to ground someone who is spiraling. Don’t assume that this happens in services. Most of the services are not good at providing any kind of emotional support or stability. Being up to hang out with you at the dog park for an hour can be the most normal thing that has happened to that person all week. Getting people out of services, even if it’s just for short breaks, can be critical to keeping them sane. Being surrounded by other traumatised people and the extremely weird combination of ‘normal privacy doesn’t exist, normal relationships don’t exist, professional boundaries limit connection, and everyone else is an expert on your life’ that characterises extended contact with staff in services is very hard on people. Helping them get breaks from this and to reconnect with a world where they are regular people for awhile can make a big difference.

Listening and providing emotional support can also help a lot, although I do suggest that you don’t get in the way with this. This kind of crisis can be emotionally overwhelming. A lot of people need not to feel anything very much, because they’ve got so much to do. Dissociation can be the thing that’s keeping them safe. If they want practical help – using your phone to contact services, filling in forms, borrowing your car to get to an appointment – and shy away from your sympathetic ear, let them be. Don’t be surprised if an emotional crash comes later on, sometimes after the drama is supposedly over. I did this with one unit I was in after a period of homelessness, and most of my then friends were confused and a little frustrated with me – wondering why I still wasn’t happy. Delayed reactions aren’t uncommon.

People can also regress, which can scare you if you haven’t experienced it before. Psychological collapse can happen where they freeze and stop looking after themselves at all. Sometimes people wind up in psychiatric services at this point. They may become wildly manipulative and unpredictable as their sense of desperation spirals. They may also just disappear and try to manage on their own. Anything is possible, the stress is intense.

Lastly, one of the things a home base does is keep a safe place somewhere in the world where you are loved, and thought well of. However dark it may get elsewhere, somewhere you are treated with dignity. Like anyone in bad circumstances, a massive amount of victim blaming happens. Our culture is not kind to people who’ve suffered this kind of tragedy, we have a lot of terms for poor people and few of them are something you could maintain a sense of self worth and identity with. Experiences like homelessness assault our sense of safety, our expectations of our lives, and our identity. Home base can at least be a place where our identity is preserved, where we remain a friend rather than a ‘homeless person’. Anything that buffers us against the acid erosion of self will help. Anything that helps us to function more as a traveler does, with some dignity and a keen sense of the absurd, will help. Meaning, hope, acceptance, these are things that help people get through dark times.

Homelessness & Poverty

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

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

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

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

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

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

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

Delicately balanced
I
s 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

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?

Safe Sex 6 Communication & Consent

I come from a highly conservative background where our sexual health information was entirely about abstinence, and based on fear of pregnancy, disease, and shaming. Sex was talked about as sacred, but basically seen as a commodity that had the highest value the first time you traded it, and depreciated rapidly. We did the whole ‘hand a rose around the room and fondle the petals until they fall out’ exercise my school. I was never supported to develop a language to feel comfortable communicating about sex, because the model of sex I grew up with assumes that I would never need it – I would remain a chaste virgin until I was married, then I would instantly become happily sexual and permanently available for sex with my husband. There was an assumption that ignorance about sex and an inability to communicate about it would possibly more likely keep me from having it until marriage. This model lacked the idea that I would still need to be able to communicate consent, comfort, pleasure, enthusiasm, or any other needs or feelings even once married. I once sat through sex education at a camp, as a ‘youth leader’, listening to the talk for the young boys, which was outside, round a campfire, with a bunch of adult men basically saying “Sex is awesome, don’t do it until you’re married”, and then to the talk for the girls, which was inside, everyone sitting at individual desks in a classroom, while the adult women said “Sex is risky and you could get pregnant, don’t do it until you’re married”. I was so angry that we were not telling girls sex is awesome, that they got the ‘sex is scary’ story, that I folded the paper handouts into airplanes and threw them at the presenter until I was thrown out of the room. I had no language other than this to communicate my frustration and distress.

Many of us grew up with variations of these ideas where communication about sex is unnecessary, and they have been cast in a romantic glow – that if it’s ‘real love’ your partner will just ‘know’ what you want and like, or that a ‘real’ wo/man knows how to satisfy a wo/man. That if you’re in love you will be perfectly sexually compatible and never need to negotiate that. That all ‘decent’ people  like the same sexual behaviours and therefore never need to communicate about their desires. On the other hand, sometimes these ideas have been taught to us with a brutal resignation – I was once advised by a female friend that “it takes a long time for women to get used to sex, and I don’t think they ever really enjoy it”. Tolerating miserable sex is seen as being grown up and understanding that real life isn’t like the movies. This is really sad.

These kinds of ideas can make it challenging to communicate about sex! But, there is a big difference between privacy and shame. The former is a part of our healthy function as people, the latter is painful and destructive. Many of us (me included!) feel embarrassment and uncertainty when we try and talk about sexual stuff. That’s okay! My experience has been that if you can untangle embarrassment from shame then it’s not such a big deal. I talk about sex quite a lot, here on my blog, in my relationships, and in appropriate ways with people I help support in my mental health or queer supports work. In fact, it turns up as a topic all over the place, even in my work as an eating disorder peer worker. Sexual health and needs are not side issues in our lives, they are often key foundations in our relationships and health and happiness. However, I still get embarrassed! I still blush – I’m part German and have fair hair and white skin, my blush response can be pretty incredible! You don’t have to be some kind of emancipated modern person to learn how to communicate about sex. 🙂 It does get easier with time and practice.

Part of this is about education. I started reading and learning about sex, anatomy, being queer, child development, and so on as a young adult because I needed a broader framework than I’d been provided with in my upbringing. I remember the intense shame and self loathing I experienced as a young person, and the fear that myths and misinformation created in me. I had a vision of a future in which I would not be trapped anymore in the shame, terror, self hate, loneliness, and awful double binds about sex I had been living in. I was taught women are not interested in sex – so when as a young person I naturally started to mature sexually, I thought of myself as deviant and evil. I was taught that being gay is wrong so I feared and suppressed my natural interest in other girls. I was taught that once a man is aroused he “reaches a point of no return” where he cannot stop sex, so I learned that I was not permitted to stop or change my mind once a sexual act had begun. I was taught that after marriage a woman’s body belonged to her husband, so she cannot deny him sex. I was taught that if an adult man touches a girl child that is abuse, but if the genders are reversed no harm can be done. I was taught that men cannot be raped, and that women cannot be sexual abusers. I experienced peer based sexual abuse that was not seen as abuse by anyone I sought support from because the others involved were also young people, so I learned that what happened to me didn’t count, and the trauma reactions I suffered were simply me over reacting or being a drama queen. I witnessed sexual abuse, the entangling of sex and violence, sex and shame, punishment, sadism, entitlement, and humiliation. I became a repository of horror stories as other people confided secrets to me. I became a silent witness to peers helplessness in engaging their own sexual abuse, unwanted abortion, and incest. I was trapped in a nightmare mess of conflicting messages about sex through which I attempted to mature into an ethical, passionate, adult sexual woman. The result was disastrous and life threatening, an intense inner conflict and self hatred, warped frameworks about sex, relationships, and consent, and a clash between unbounded desires and terror. All of this happened in secrecy and silence, without a language to communicate, with no way of understanding what went wrong or how to set things right.

What I did have was this vision of myself as someone who was no longer afraid. Someone who could use correct anatomical terms without stuttering, who was comfortable with their own sexuality. Someone who might even have great sex, who could talk about it, ask for what they wanted, navigate consent, explore, explain, support, nurture, and adventure. It wasn’t a clear vision and I couldn’t believe in it all the time but by this star I set my course and began to inquire.

We need a language to be able to even think clearly about any of these areas. Communication and consent are profoundly connected ideas, without the ability to communicate, consent is not possible, and without the knowledge that we are allowed to express or deny consent, we have no foundation for our communication skills. So where do we start? Building communication skills in this areas started for me with a language I could engage.

Find a language you like for everything about sex. When you spend time with a sexual partner, work on a language you both like! What words do you both feel good about for your bodies, for different sex acts, for toys, lubes, for asking if the other person is interested in sex, for boundaries around what you are consenting to, the whole works. For some people this is pretty easy and there’s not a lot of hassle. For others many words or terms are highly negatively charged and you may need to be creative to come up with ways of communicating about sex that are fun, respectful, useful, and don’t increase stress. It doesn’t matter if this private language makes no sense whatever to anyone else, as long as it works for whoever is involved with sex with you.

You need to be able to clearly communicate nuances, because sex and consent is more than yes/no! This is kind of frustrating considering that a whole lot of our culture hasn’t really wrapped their brain around the idea of yes and no yet! There’s a whole conversation here, the need to be able to communicate things like “It’s late, let’s go to bed, naked is good, lets kiss and cuddle but I’m not in the mood for anything else” or “Yes, I’d love to have sex, but I feel like this or this and not that (kind of sex) today”, or “How do you feel about trying this new (toy/position/game/whatever) today?” or “I’d really like to sleep alone tonight, don’t take it personally, I’m not upset with you and I’d love to have you over again on Friday if that works for you?” or “I know you’re not feeling into sex tonight, but I’m really worked up, do you mind if I take care of myself in bed while you hold me?”. If you’re not used to this, these conversations are hard at first. Whether you’re setting the scene with a new sexual partner or trying to introduce more communication into an existing relationship, it can be scary and awkward and stressful. But then, so can sex without communication.

People who engage in types of sex that are risky use back up forms of communication to make sure everyone stays safe. This might sound a bit silly, but if you have any concerns about communication this can be a wise idea for any kind of sex. Some of us struggle to say things clearly. Terms that require a high level of confidence and assertion can be difficult. They can also be tangled with unintended meanings. So, where ‘stop’ might be difficult to say, and feel confronting and rejecting when all the person is trying to say is ‘please pause for a moment, I need to gather myself’, or ‘sit up a bit, I can’t breathe well’, a safe word can be less challenging.

Practice it! If you have high anxiety or difficulty with boundaries, you may really struggle with this. So, silly as it sounds, practice it with your partner or with each partner. Sit on the bed, have a massage, and say your safe word. Touch stops, and then starts up again when you ask for it. If verbal communication is sometimes compromised – due to disability, anxiety, dissociation, switching, or anything else – have a ‘safe touch’ that is used the same way. It needs to be easy and simple – a pinch, tapping the other person twice, clicking a ring against the bedhead… This is especially relevant for any form of sex where you can’t see other person’s face. It can be difficult to tell sometimes if the breathing or sounds are pleasure or distress, and that uncertainty can add a lot of unnecessary anxiety to sex. You need easy ways to check in that don’t feel too awkward – “Are those happy sounds?”. Especially if you or your partner have a lot of stress around sex and communication issues like this – checking in needs to become the norm to keep sex emotionally safe.

Don’t let anything make you feel awkward because of this, I know that we never see this in movie sex or sex in books. It is critical that you both want what is happening, that neither has frozen and that sex is not migrating between consensual and abusive. We as a culture are still struggling to understand that this happens, and we don’t give people the tools we need to navigate sex and keep it good. Safe sex doesn’t just mean stopping when they say no, it’s about not doing anything they haven’t said yes to, and about learning how to communicate no, and yes, with enthusiasm and without shaming.

This isn’t the final word on this topic, in fact it barely scratches the surface. Communication about sex is linked to but also distinct from our communication skills in other areas. Assertiveness is part of this but also insufficient – we shouldn’t have to be highly assertive, we should be working to create safer environments where it’s easy to communicate even if we’re feeling very vulnerable. If you’re interested in exploring ideas about the nature of consent further, I suggest reading “Yes means Yes: Visions of Female Sexual Power and a World without Rape” by Friedman and Valenti. I hope that my simple, if unusual, suggestions might start you thinking about these topics in your relationships, and help you come up with creative ways to build in more, and easier, forms of communication about sex.

This article is part of a series about emotionally safer sex. Try also reading

Abstracts for the World Hearing Voices Conference

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. 

Safe Sex 5 Reset the norms

In our culture we have the idea that a relationship is a linear progression from strangers to intimacy, from distance to closeness, from a touch on the hand to ‘home base’. We also think that you never lose ground you’ve gained. Once you’ve reached second base, second base is always available. Once you start having sex, or seeing each other naked, or kissing in public, those are now always allowed and to be expected. This does not make sex safe. If one or both partners have any kind of anxiety around sex, this pressure, the awareness of these norms being set to new places, dramatically increases the stress because even after a great time together, they will now have to either put up with contact they don’t want, or fend off a partner who thinks this is the new norm, whenever they don’t feel comfortable with it.At the extreme, this assumption of the new ‘normal’ between you, what is okay and acceptable and to be expected, becomes a sense of entitlement. We might not mean it that way, or think very much about it, but it’s pretty easy to start making assumptions and to treat sex like something we are owed. People who, for whatever reason, already feel anxious or unsafe about sex, can be highly sensitive to this dynamic. It may not stop them having sex, but it can certainly stops sex feeling safe.

I’m not being naive here, and this is not about desire discrepancy – the partner with a higher sex drive is not bad or wrong. This is about the way you engage sex. This is about both of you always having the right to say no and not be shamed, as much as the right to suggest sex and not be shamed! This isn’t about building sexual rejection into your relationship. It’s about not building in entitlement, unawareness, or distress. We do not have the right to coerce our partners into having sex with us. We have the right to feel desire, attraction, and arousal. We have the right to want sex. We have the right to make choices about who we want as a partner, who we want to be sexual with, how we want that relationship to work, but I do not believe we have the right to demand sex, from anyone, ever. That belief and those values are part of what help me to be a safer sexual partner, and to require emotionally safer sex from my partner.

Sometimes when I talk about this idea with people, there’s fear. People get anxious that if their partner is truly that free to refuse sex, they would never have sex. People get anxious that if they refuse to have sex with their partner, their partner will have it with someone else, or leave them. There’s ideas about owing each other sex, that having sex once implies a contract that you will have it again, or that certain types of relationship choices – such as moving in together – mean you are now permanently available for sex and lose your freedom to decline. Push these ideas a little further and we move into rape apologist territory – that what you wear signals that you’ve decided to have sex, that the person who pays for the night out is owed sex, that if you’ve kissed you’ve offered an un-revokable consent to sex, and so on. I get some of these ideas and how pervasive they are- mainly because I’ve been severely tangled in them at times myself. And I’ve suffered, and I’ve hated myself. I know what it feels like when there is terror, shame, self-loathing, guilt, obligation, rebellion, recklessness, misery, and humiliation choking me during sex.

Here’s the nub. If you or your partner feels like this during sex – it’s not really sex. We have other words for sexual experiences where one person enjoys themselves while another one screams inside. I’ve learned that not having sex is far, far better than having bad sex. Sometimes people are shocked by my many years of voluntary celibacy. It’s almost a taboo in our culture to make a choice like that – not for lack of opportunities, or for lack of desire, but to chose to decline sex. (Of course, there’s nothing particularly special or holy about it either, and it’s certainly not better than anyone else’s choices. It was just what I wanted at the time.) I’ve made stupid decisions in the past that any sex was better than none. I’m old enough now to be wiser about that. I’m wise enough to want no more bad memories about sex.

There’s another way, and it might feel frightening or radical, like it opens the door to rejection or a total lack of sex. I’ve found that for me, it has the opposite effect. Sex is not a contract but a song, a dance, flight.

So, try to reset the norms each time, back to dating, back to checking. It might feel stupid, as we have almost no cultural support for this idea. The higher the level of anxiety and the more communication difficulties you or your partner have, the more important this is. Don’t assume anything. Sex last night doesn’t mean sex tonight. Nakedness being fine yesterday doesn’t mean you can wander in and brush your teeth while they’re in the shower the next morning. Don’t force a stressed partner to constantly say no. Assume no first, and check to see if it might be a yes. This approach also gives freedom for people to have difficult reactions after sexual contact. Even if the experience is wonderful, it can stir things up. Breathing room is critical at times. Allow the relationship to move between romantic and platonic. Last night was hot sex. Tonight is cuddles while wearing pajamas. With safety comes freedom. Unless you make it very easy and comfortable for your partner to say no, you are not having safe sex. Unless you make it safe to initiate sex without being shamed, you are not having safe sex.

As a multiple, this need to reset norms and check again is especially important, as I switch to non-sexual parts or to child parts. Properly covering non-sexy clothes or PJ’s are worn on nights when my child parts are around, or are kept next to the bed in case they turn up unexpectedly on other nights. Nakedness does not cue sex – sometimes it is platonic. For my system this is critical, it reduces shame and stress about sharing a bed, a bathroom, and life with another person when some of the time Sarah is a child, or a guy, or someone who’s not in a sexual relationship with my partner.

Resetting the norms doesn’t have to be horrible – anxiety ridden, stressed, depressing. It can be sexy as hell. If you’ve never done anything like this it will take time to find your rhythm and get comfortable but it does get easier. Talk it through. Find what works for you both. Own your own desires and let your partner own theirs. Lean over and whisper “You look incredible tonight, can I kiss you?”

You might like this video that links the idea of having sex to music jams:

This article is part of a series about emotionally safer sex. Try also reading

About Eating Disorders

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

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.

The Convalescence

I’m still awfully sick, but I think I’ve hit the bottom and started to come up. I’m having some difficulty processing the meds so I’ve cut them back to the basic essentials. There’s been a fun evening of mania/weird meds high which is admittedly better than abject misery but as it usually indicates major liver stress it’s important to ease that before less fun symptoms, like half my skin falling off, show up. The upshot of this is I’m less giggly than I was last night but the pain level is a fair bit higher than I like. The throat and kidney infections seem to be improving, the chest infection is persistent but not degenerating into pneumonia, which is great. I’ve got an orchestra of bells, whistles, rattles, and wheezes in my lungs but I don’t feel like I’m drowning all the time. The fluid and pressure in my ears is still causing me troubles and wrecking my balance and sense of space. So no driving. In fact, still not a lot of walking. I’m prone to random collapses when the room suddenly flips upside on me. Mood wise I’m erratic, happy one moment and sobbing my heart out the next. I hate being sick! I’m dogged by a sense of misery and failure. Today is supposed to be my final class of Photography at college – I need to call them as I only managed to actually make it to two lessons and certainly can’t catch that all up now. 😦

Ah well. Tonks is delightful, the abscess on Sarsaparilla’s ear has healed up, saving me a vet trip thankfully. Salt water washes and betaine did their job. Zoe is miserably cooped up without her regular walk. Friends have been helping out with meals and chores as they can. Rose helped me find and clean the large puddle of kitten pee from behind the couch. I’m sleeping okay, just not at night. It could be worse!

I’m planning projects for when I feel better – I want to finish planting out all my new little seedlings, hopefully before they die. I’m terribly excited about my sister coming home from her 5 year stay overseas – she’s in the air as I type tonight! I’m planning a re arrange of my house with quite a major reshuffle of my sleep area. I currently have a queensize bed tucked into the small bedroom of my unit. It just fits by being pushed right against the wall on three sides. This has been okay-ish, but I’ve had enough of it. Rose is doing night shifts with her new job, I’m noctural and ill and spending a lot of time in bed, it’s a pain to make it when you can’t walk around it, whoever sleeps against the wall has to climb over the other person to get in or out… and more importantly sometimes the sense of being trapped is just too stressful for either of us to be comfortable in that spot. There’s been a couple of memorable rough nights with screaming nightmares and totally disorientated wakeups that I’m pretty keen not to repeat. We do have the lounge as a backup place to sleep for those nights that trauma stuff or multiplicity stuff makes sleeping in the same bed a bad option, but it’s not our preferred option and some nights we’d like to be in the same bed, we just need to both be able to easily get in and out to be comfortable. It’s worth the upheaval to me to be able to accommodate this kind of deep seated trauma stress.

So, tonight I was roaming my unit with a tape measure, trying to work out where else I could fit my bed. As it turns out, not many places. The master bedroom or the loungeroom are my only options. I’m loathe to pull my studio space in the master bedroom apart, but the lounge presents issues of its own. I’m thinking at this point that I may separate my studio into a couple of different parts and that way be able to move it into different areas. There’s the storage aspect – big shelves of boxes of supplies – I don’t need these to be immediately to hand. It’s sufficient to go and grab the box of supplies for that project at any time. I wish they could go in the shed but unfortunately, it’s not very large, not tall enough to fit the shelves, and most importantly, not waterproof and prone to flooding in winter. Then there’s my ‘wet’ table and big easel – these are for my paints and other wet messy types of art such as gluing or plaster or polymer clay work. Lastly there’s my ‘dry’ table. This is for everything where a perfectly dry, smooth surface on the table is essential, such as ink paintings, and needlework. I’m thinking that the inks for my arts and my journals could all be put together in the bedroom space as I usually do a lot of writing in bed and sketch with inks in my notebooks likewise. It’s a space for poetry and haiga and ink art and wrist poems. Then perhaps the wet art could happen in another area of the house… I’m somewhat tempted to pull all my collection of bookshelves into the small bedroom and turn that into a library/cat tree/nook. It’s got terrible light as the shed blocks the window so it’s not suitable as an art space at all. I do love light and windows, and I’m keen to use mine to their best. I’d love a spot to eat breakfast by a window (in bed is fine!), and a place for art by a window with good light.

Lastly, I need to move my computer area from the nook behind my front door. This is the draughty-est place in my home and I spend too many hours here in the wee morning hours, chilling. Fixing the draught isn’t easy due to unusual design of the door and I’m restless for a change anyway so I’m looking around. Perhaps a computer/library room? It’s fun to plan, even though at the moment the walk to the sink to refill my water bottle is as much as I can manage. Thankfully I still have library books, and a kitten is a constant source of either cuddles or diversion. Life goes on.

Out of Despair 6 – Dreams and Tragedy

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 5 – The Cave Dwellers and the Golden Light

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 4 – The Railway Tracks

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