Bringing me back to myself

Last night, Rose was sick and I was coming down with another sinus infection – oh joy! So instead of roaming around Pride March with most of our friends, we stayed home and walked TV. Rose admitted to being a captive audience so I put on one of my favourite movies, Cyrano de Bergerac – the version with Gerard Depardieu. I love it so much, it’s been a couple of years since I watched it. It’s part of my ‘cannon’ of books, films, and poetry that I usually revisit about annually. I wept and wept through it. I know parts of it by heart and yet it still moved me deeply.

It got me thinking about this ‘cannon’ collection and what they mean to me. After Cyrano, I couldn’t help but take up my pen and write a poem about it, about remembering that for me, poetry is the meaning of life. It is how I live and feel and breathe and experience the world! I don’t mean the act of writing, or the ability to turn a pretty phrase. I mean something else – passion, frailty, beauty, something more bohemian. It’s about speaking from your heart, living life large, stargazing, nakedness, joy, grief. I’ve gone too far away from these values. I kept trying to fit myself into a world I will never fit. I miss my pen, my ink, my heart.

So I wrote and remembered what it was to write, I thought about the philosophy of Cyrano that so speaks to me – him admonishing a character who won by secrecy and deception – that he had not won but rather “gave up the honor of being a target”. His pride, his enthusiasm for struggle, his understanding of the emptiness of success and the great courage it takes to love. “Winning’s not the point. The fight is better when it is in vain!” These ideas I cherish. They strengthen me. They bring me back to my own heart, my own ideals. I weep and am restored. I remember what I have been fighting for and why.

This is what my canon of art does for me: it brings me back to myself. I spend my life in a world that does not think or believe or desire what I do. I am small, I lose my way. I imbibe, like poison, ideas that would kill me, would grind me into the dust. Ideas about life and poverty and value. My canon are my defense, they restore me to my own beliefs. They wake passion and courage within me. They remind me that all the ideas of the world are only that, ideas. Little prisons made by the small thoughts of little people. Whereas my dreams, they open up my world. They inoculate me, rejuvenate me, restore my heart to the place where it soars.

This is the difference between believing I am ‘white trash’ when living in a caravan park, and feeling lucky for my gypsy life. I open up my heart and all the world floods in, all life blows through my soul, with such pain and such untempered joy.

So I come back to them, over and over, to heal myself from the wounds of a world that does not live like this or understand it. It is about being deeply alive. It is a way of living that I treasure.

Beautiful Cyrano, who failed in so many ways, and was yet true to himself, lived gloriously. To live a life like his I would be doing well indeed. We measure our lives by standards that mean less than nothing to me. Worse – we get only so little time, so few Autumns, which are eaten by lethal ideas like – death is something that happens to other people, like – I’ll have time to do that next year, like – I must achieve to have worth. We get so little time and it is so easily devoured by the philosophies of the empty and deranged.

In poetry I find my meaning and my hope. It is a philosophy I cherish and must nurture more. It takes me beyond the pain of failure, the prison of sickness, the wounds of deep loss. Beyond nightmares and despair, the pit, the black sea, the place where all the world becomes blood. It is breathing far under that water, it is staring into the face of the nightmare, it is a scream that becomes a song. It is joy at the edge of death. A flower worn close to my heart. Sunlight on my skin, rain on my mouth, lover in my arms. All things, embraced, the cup drunk deeply from. Authenticity over positivity. Honesty over comfort. Passion over an easy life. I have not failed, I have lived. For someone fractured by dissociation, who once walked as the living dead, left numb, deaf, blind by it – this belief in life, this desire to be alive and to experience it is the antidote to my private hell. Learning how to protect it, how to run from buildings on fire, from lovers who carry cages, from hands that trap and bind, that is my task. Burning brightly, I walk in shadow unconcerned. I speak of hope to other hearts. I can remind people that pain does not destroy life, it is a dark thread in a tapestry. That even our tears have beauty.

Always coming home, then, a dance – back out into the world, home again to these keepers of my heart – Cyrano, Bradbury, McKillip. The artists who whisper truths in my ear and keep my heart from cages. How I love them. Bless them all.

Working on my talk about dissociative crisis

I’ve got 20 minutes to talk at the World Hearing Voices Congress about supporting someone through a dissociative crisis. It’s happening in a couple of weeks so I’ve been working on it recently. I met up with Bridges co-facilitator Ben, and we nutted through some ideas until it coalesced into a coherent framework. I love that process. I tend to need to bounce off someone else to think clearly and plan something like this. There’s such a sense of satisfaction about taking the amorphous and ephemeral and being able to find some kind of underlying theme or order to them.

When I asked other people about what they find helpful or not helpful when they have been in a dissociative crisis, I got exactly the answers I was expecting – which is to say, a very high level of contradictory responses. At first this seems hopeless – it’s so much easier to be able to give a straightforward answer – if A, do B. This is the medical model – if infection, give antibiotics. The nature of what helps with dissociative crisis is highly individual, so much so that what will be of great help to one person will make another drastically worse.

But it isn’t hopeless. Many people who have these kinds of experiences are able to be very articulate about what will and won’t work for them. One of the simplest things you can do is just to ask and invite information. If the person is a stranger to you and not able to give you any of that information, there are still many things you can try, within a framework of useful principles such as those of Trauma Informed Care. Having a broad understanding of the kinds of things that people may find useful gives you a bit of focus for a trial-and-error approach with someone in crisis, so I’ll be going into those.

I’m giving this talk free here in SA next week for everyone who can’t attend the conference. Here’s a link to the flyer with all the details. Feel free to share it around, it’s aimed at everyone, staff, people with dissociation, family and friends. You’re welcome to come along. 🙂

Edit: Update, this talk has been postponed due to illness – new dates will be provided soon.

Climbing many mountains

It’s been a roller coaster few days here, seriously! I’m in a really weird place at the moment where some of my friends are going through hell while others are feeling like life is going their way. I’m mostly doing really well, which creates an odd kind of survivors guilt at times. Changes are afoot in all directions… I’ve been fortunate enough to secure a couple of big contracts for my business, which is extremely exciting. A lot of hard work is starting to pay off and I finally have money to do things like pay for an accountant! I’m working hard at the massive amount of admin this generates, and if you don’t look at the state of my house,  not falling behind too badly.

My beloved dissociation support group Bridges is currently taking its first holiday in two years, which is very sad on one level but rather exciting on another… Those of us who have put so many hours into running it are all feeling stretched lately, it’s very tough work being a volunteer peer worker when you have so many other things going on in your life, great things like work, or awful things like sickness and system stress. My goal at the moment is to ease the transition as gently and respectfully as possible for everyone involved, then get back together as people are ready and talk about what next. I’ve set aside a reduced number of volunteer hours a week for myself this year, only ten, and I’m a bit excited about what we can do with that… The format of the whole DI Inc may change too… Everyone involved is deeply passionate and believes that we need an organisation to educate and speak on our behalf, but the truth of the matter is that no one actually wants to run one… We all have other passions, like giving presentations, or education, or creative projects. We’ve only found ourselves in an organisation because that’s the format we were provided with. But it’s hard work, and everyone, me included, has other stuff going on. So, change is happening, which is hard, but also feels good to me, flexible, adaptive, responsive, not locking people into to approaches that aren’t working but looking for new ways to harness that passion without exhausting and depleting the amazing people behind it.

I’m having trouble keeping up with my work at the moment and not getting much time off, but the night before last I invited some friends over to Rose’s place for a games night, and we had a great time. I love games nights, they’re fun, inexpensive, and just about guarantee a good laugh. 🙂


We made toasties for dinner and some people ordered pizza. I really enjoyed myself.

I’m glad I did because Rose had a rough evening with some trauma stuff and I did my best to be supportive. I drove home at midnight and started cleaning my kitchen up, only to discover that my manhole cover in my ceiling had been opened up! No one knows who did it, which is very creepy. So Rose calmed me down over the phone, and Zoe was worth her weight in gold. She may be a total nuisance at times, but nights like that she makes up for it in spades. There’s no other way I could have slept in my own home that night. Tonks did his bit by cuddling up to me. I didn’t get to sleep until around 5am, and then had a horrific series of nightmares, waking regularly, before giving up around 1pm and getting up. I sat out in my garden with some breakfast to clear my head and that worked wonders.

So here are some of the heroes of the night, looking suave:


When I started to hallucinate a few songs, Rose reminded me that Zoe would react if they were real. That was very helpful to remember. A friend of mine who struggles with psychosis used to call her dog her Multidimensional Seeing Eye Dog because of this truly wonderful reality testing quality. I’ve always loved the phrase, there’s truth and a wry humour to it. Pets are amazing.

Common DID myths

I was asked today by email if I’ve encountered any common misconceptions about Dissociative Identity Disorder (DID). Where to start I wonder?? Here’s my reply:

  • We’re all serial killers.
  • We’re all dangerous.
  • We cannot be trusted.
  • We are liars.
  • We are attention seekers.
  • We are all messed up victims with nothing to offer anyone else and no capacity to function without extensive support.
  • We are so weird, different, and bizarre that we are basically aliens, utterly unlike other people in any regard.
  • We are psychics, in touch with the spirit world and merely misunderstanding our gift and thinking we have DID instead.
  • We are gullible vulnerable people our shrinks have implanted with the idea that we have DID. (see Is DID iatrogenic?)
  • All people with DID are the same. (See Multiplicity and relationships)
  • DID is only ever the result of the most extreme, inhuman, unimaginable child sexual trauma you can possibly think of.
  • All people with multiplicity lose lots of time. (See What is co-consciousness?)
  • People with DID can’t work.
  • Everyone with DID has an inner self helper, an inner protector, an inner wounded child (and so on).
  • All people with DID should integrate.
  • Integration means you are now ‘well’ and all your problems go away.
  • The goal of every person with DID is to become a normal person.
  • DID is basically just a complex way to try and avoid your problems.
  • DID is just a way to avoid taking responsibility.
  • DID is just an excuse to be lazy and confusing.
  • Everyone has DID.
  • People with DID are extra special people who are nicer, more intelligent, more creative, and more wonderful in every possible way than all other people.
  • People with DID are all conscientious and loving and would never hurt anyone.
  • People with DID are crazy.
  • DID is the same thing as schizophrenia.
  • DID is the same thing as PTSD.
  • DID is the same thing as BPD.
  • People with DID have ESP and other otherworldly characteristics.
  • People with DID can never recover.
  • People with DID are impossible to work with.
  • People with DID are manipulative.
  • People with DID should pick one stable part to be out all the time. (See Parts getting stuck)
  • People with DID are merely under the delusion that they have alters.
  • People with DID always have a ‘real person’ and a bunch of alters.
  • If you hear voices inside your head you have DID, if you hear voices through your ears you have schizophrenia. (See Parts vs Voices)
  • It’s not possible to have DID and psychosis.
  • If you have lots of parts you have less chance of recovery.
  • Switching is always really obvious.
  • It’s always easy for other people to tell the difference between parts.
  • If anyone you knew had DID it would be easy for you to tell.
  • Alters always know who they are. (See Multiplicity – Mapping your system)
  • Alters always have a complex back history of their identity.
  • People with DID can never control their switching.
  • People with DID always know they have it.
  • People with DID are always in control of their switching. (See Multiplicity – switching and relationships)
  • People with DID make each other worse if they spend time together.
  • People with DID only get better in therapy.
  • People with DID never have any other challenges (disability, poverty, discrimination on the basis of sexual or gender orientation etc).
  • All people with DID are white, straight, cis women. (See Another coming out)
  • DID is always formed when an abused child imagines that the abuse is happening to a different child instead.
  • People with DID never spontaneously integrate.
  • People with DID who integrate never split into parts again.
  • People with DID always have lots of parts.
  • DID is the worst thing you could ever wish on someone.
  • DID is caused by things other people do to you. (rather than your response to those things)
  • DID is all about pain. (See I am not Sarah)
  • You either have DID or you don’t, there’s no spectrum of multiplicity.
  • If you have more than one diagnosis, you are sicker and weaker and less likely to recover.
  • All people with DID are going to recover horrific memories of traumatic events they hadn’t been aware of.
  • People with DID understand each other in far deeper way than a singleton will ever understand a person with DID.
  • DID is an adaptive gift and never really causes any problems for anyone. (See Adaptation and Control)
  • People who say they are DID are just trying to get out of a crime.
  • The United States of Tara is an accurate representation of all people with DID. (See my review here)
  • People with DID have to be careful not to encourage or allow their parts to become any more separate than they already are. (See Multiplicity – Is naming parts harmful?)
  • Parts will always hate each other. (See A poem conversation between parts)
  • Most psychiatrists, psychologists, and doctors know a lot about dissociation and DID (See DID Card)
  • There’s lots of good resources for people with DID
  • It’s easy to find quality, reliable information about DID
  • Most therapists are willing and capable of supporting someone with DID
  • Carer supports don’t need to be tailored to the experience of loving a person with parts.
  • People with DID are the most unwell, challenged, vulnerable, and needy members of any family or group. (See Caring for someone who’s suicidal)
  • Regular mental health services are appropriate and good supports for people with DID.
  • People with DID should all be locked up away from the regular community.

Yeah, I know I changed first to third person. I’m tired, and you get my point. I don’t think the list is complete, that’s just off the top of my head at the end of a long week. Have any to add?

Edit: Just to be very clear that I’m presenting all these ideas as myths. I don’t agree with any of them. The links in the text are to other posts I’ve written that explain why not in greater detail, and what I do believe instead. I think that maybe reading such a big chunk of myths, particularly very common ones, perhaps it’s more difficult to remember I’m presenting then as myths. I think I’ll put up a counter – post where I summarise what I do believe about DID…. Watch this space! 🙂

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

Dazed but loved

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.

See more like this:

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

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

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

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

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

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

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

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

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

Follow up – Where does my psychosis come from?

Abstracts for the World Hearing Voices Conference

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. 🙂


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

Voices as parts: Understanding multiplicity and other dissociative experiences

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

Embracing Diversity – Life as a Tribe

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

Supporting someone through a dissociative crisis

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

About Eating Disorders

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.

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

Out of Despair 3 – The Tribe

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

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

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

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

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

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

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

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

Out of Despair Part 1 – Language is Powerful

Part 2 – Frameworks Free and Bind

Part 4 – The Railway Tracks

Out of Despair 2 – Frameworks free and bind

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

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

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

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

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

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

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

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

Out of Despair Part 1 – Language is Powerful

Out of Despair Part 3 – The Tribe

Out of Despair 1 – Language is Powerful

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

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

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

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

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

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

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

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

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

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

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

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

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

Out of Despair Part 2 – Frameworks Free and Bind

Staying safe in a crisis

I’m still in crisis mode here, working on staying safe until I’m in a better head space. I haven’t worked out what’s triggered this mess – that can happen and it can take some time to put things together. The task at the moment is staying safe. I have at least one severely depressed part, which is new territory for us. Anxiety is also sky high, I’m struggling to eat (or keep food down), fighting off a cold and sinus infection, and feeling very unsafe about self harm.

If the mental health system was less toxic, I’d be in care. But because it’s such a mix of good care and abuse, it’s high risk. For someone like me with my diagnoses, it’s likely that I’ll struggle to get any care at all, and that’s not a struggle I have energy for. On one occasion previously when homeless, on the run from domestic violence, exhausted at caring for another mentally ill family member, and seriously suicidal I turned up to ACIS and asked for help… I was told that I had a better chance of surviving alone than I did with their assistance because they do not treat people with DID well.

So that leaves me with trying to manage using my own resources and networks, to create something as safe as I can in my own life. I shut down to the bath if the self harm impulse is overwhelming. I’ve borrowed two bags of books from the library. This gives me something else to focus on. Sometimes they’re a useful escape. Sometimes I read things that help me in some way. There needs to be something to ease that dangerous, frantic despair, the kind that has you running into the night looking for anything that might make you feel differently. I also have movies to watch, preferably long involved ones I already know. The flavour of the week is Harry Potter movies.

Sleep and food are critical. If they are both interrupted I will degenerate into severe dissociation and borderline psychosis. I’m fortunate at the moment in that I’m sleeping. Keeping food happening is more challenging currently. When you’re very anxious your digestion shuts down, the thought, smell, and taste of food becomes unappealing. If I force myself to eat I will vomit. So I have to find small, filling meals of things that tempt me, where the smell or texture don’t turn my stomach. Sometimes this means I eat the same thing every meal – like a bowl of cereal. Sometimes this means I need a different flavour and texture for every meal for a while. This gets very difficult if you’re not well enough to drive and stock the fridge. I need to drink enough fluid that I’m not dehydrating.

I need to keep enough admin going that my life doesn’t crash. This one is hard. I’ve cancelled almost every appointment this week. I’m getting by at the moment. Yesterday I was up to cleaning all the rotten food out of the fridge. I’m keeping up with feeding the pets and sorting out the cat litter tray. I’ve paid my bills. I’ve actually contacted people to cancel appointments instead of just not turning up. I’ve taken the dog to the vet when she was ill. I’ve removed all the clothes and linen the cat has peed on to a big pile in the laundry. I try not to think about all the big things worrying me about my life plans for the next few months or years, or I become hysterical. The goal is just one day at a time. Today I’m hoping to buy milk, cordial, and maybe hang out with some friends this evening if I feel safe enough to drive and have a chance of passing for normal.

I try and stay in touch a little with other people. Facebook can be good for this, if you’re comfortable with that and know how to use your privacy settings. It gets hard to communicate. I’m mixed up. I stood at my kitchen window yesterday and simultaneously felt rigid, bitter despair about my life, and simple childlike joy. That’s hard to explain to other people. In between jags of the kind of distressed crying that we never see on TV because it involves a truly horrifying amount of snot, I look fine. Maybe a bit tired and jumpy. I spent 5 hours yesterday morning trying to work out how to reply to a text from Rose asking me how I was, while she got increasingly concerned. Don’t do that. We’ve since decided that an empty text with an asterisk in it means ‘I’m not about to kill myself, but I’m not very good and I can’t think straight enough to write to you. But I am awake and alive.’ In between thinking about dying, I’m okay, just very flat and tired. There’s even been some confusing but welcome good hours where someone happy turns up. After the first few days I’ve stopped hoping that this means the whole mess is over and getting devastated when I go down again. I also have to be careful because when I don’t feel like a complete mess, it’s easy to over reach and take risks I actually can’t afford to manage at the moment.

I’m short fused and low on tolerance. It’s important to stay away from people and situations that stress me, whether that’s unwelcome advice, overbearing cheerfulness, people who don’t get that I’m touch sensitive when stressed, whatever. Kindness goes a hell of a long way, as does feeling like it’s okay that at the moment, you’re a useless friend and a mess.

I need to not listen to the internal chatter that says things like “You’re just lazy and weak and pathetic and useless and looking for attention and could snap out of it if you really tried”. It helps when I can share that with someone who doesn’t believe it. There’s a sting in being able to confess stuff like this with someone who can say ‘well so what if it is true? I still love you’ and bring you an icecream.

I need space to be honest. My journal, a shrink, friends, somewhere I can pour out all of how messed up I really am feeling, instead of sticking to how I am being told I *should* feel in the hope that will help. Even if that means pouring out pages of reasons I’m a failure or why I hate myself. I need to be damn careful not to drown any one person in this stuff, especially not anyone who’s already vulnerable themselves – or anyone’s who’s inclined to argue about it instead of just being kind, because I might throw things at them.

I need to make sure if I can that at least one other person knows what’s really going on so that if it turns out that my assessment of where I’m up to is really off, someone else will step in.

I need a backup plan and other options in case this doesn’t work. In my case at the moment if next week is still bad I’ll be talking to my shrink. I also run a scale of stress-reduction behaviour according to degree of harm. So for example at the moment I’m struggling with a strong drive to self harm. I’m managing this using distraction, writing, wrist poems, hanging with other people when I don’t feel safe to be alone, and long baths. If I become seriously suicidal and can’t get help, I’ll change focus and let myself self harm if that reduces enough stress and generates enough dissociation to reduce the risk of a suicide attempt. I keep shifting the goals as I need to. If I’m having a good day I try to connect to my networks, get urgent admin done, and go somewhere nice. If I’ve fallen apart I consider that if I’m still breathing at the end of the day that’s a success. In the middle there is an attempt to self care and reduce stress with as little damage to myself, my relationships, and my life as possible.

On that note I’m going to fill a water bottle and watch the Order of the Phoenix.

Looking for self compassion

A few hours ago, I was sitting on the floor of my psychologist’s office, choking on tears as I talked about what it felt to like to want to hurt myself. Something that started at 10 as a way of escaping the unrelenting misery of my experiences at school has stayed with me throughout life. My longest stretch without cutting or burning myself is 8 years. I was devastated when I fell off that wagon, and even more so to realise that for me, denying the impulse does not stop me wanting it. A desire that divides people immediately – those who simply cannot grasp the sense of need, the intensity of the urge, and those who have felt it too. It’s difficult to explain to anyone who hasn’t been there.

I remember the first time I went and bought blades. The build up was appalling. I was in year 12, under massive pressure, with no opportunity to find emotional support. I had PTSD but had been offered no treatment and no possibility for recovery. That day I walked to the newsagents and I didn’t feel broken by pain. I felt powerful, I floated. I had found another way out of the trap, of the pain of bullying and loneliness and alienation, of being forced to spend hours a day in a place I hated, where I felt without value, where I longed at times for the physical abuse because at least that left a mark I could show. At least that garnered a response from the adults. I couldn’t escape my situation, but I stumbled onto a way out where my body stayed but I broke out of the rules instead. The rules about decorum and what is appropriate, about how to live and what to value and that the little people must learn to ‘take it’. Alone at night my body became my thing again, mine to do with as I chose, to use as an instrument on which to play out my pain, to prove my agony. I felt powerful and defiant. I felt less suicidal. It was a way to stay, to settle into the trap and obey the path I’d been given to walk. I felt above pain.

There have been days when I wake up and look at my wrists and feel so revolted by myself, such intense shame and self loathing that self harm is not enough, I want to annihilate myself entirely. There are days my wrists feel so naked and vulnerable, shivering before my rage, that I have to cover them. I wear sleeves or gloves or cuffs. I sit and find my fingers stroking stroking stroking the skin, like you stroke a distressed child or a hurt animal – it’s okay, it’s okay, it’s okay, I won’t hurt you. There are days when I see self harm marks on someone else and there’s such a leap of longing inside me, such desperation – ‘how come they get to do it?’ ‘How come they can be hurt and they are still loved?’ And then I feel so very small, and ugly, and alone.

I’m so tired of the struggle. I’m tired of the shame. Trying to walk carefully around the things that trigger the impulse, trying to find other ways to ease the pain. I sat on the floor today and talked about what it was like to be at school, what it was like to be so desperate to escape it that at 10 years old I was bashing my writing hand with a brick so that I wouldn’t have to go in. “It’s still so raw” she said to me. Yes.

Somewhere, between a house to live in, and pets and friends and a garden and a wonderful girlfriend, I feel like I’ve lost the rights to my own pain. How can I paint scenes of anguish and despair now? How can I write? Too many confidences to betray. Too many people looking to me to see if it’s possible for life to get better. So instead, there’s the longing for blood, the need to see scars, to prove pain, to connect to it and disconnect from it. To find a way not to drown in the pit of self hatred. I’ve lived my hell in the daylight, in a world oblivious to it. “You survived” she said to me. “Parts of me died!” I snarled. “Things were taken from me they had no right to take.” Nothing makes up for that.

There’s good days. There’s so many good days, things I’m excited about, new hopes and dreams. How quickly we begin to speak the language of the daylight, to conceal the wounds, to deny the pain that lingers. I’m trying to listen. I’m still here. I’m looking for self compassion beneath the fear. I don’t want to go down. I need a better way through this. I’m looking. Ink, not blood.

Dissociation and tricks of the brain

Something happens when I rearrange the furniture. It’s like part of my brain that was sleeping, wakes up and realises that I’m living in my own home where I can do that now. For a few weeks I look at everything with fresh eyes and find myself stirring out of the numb dissociation and actually paying attention to the miracle that is stable housing. It doesn’t take a lot. I’ve recently moved my bed about 30cm away from the window, and stuck a cardboard box down the gap to act as a second side table. Suddenly my room is fresh and exciting. Today I secreted a few indoors friendly plants in small pots out of my garden and put them on the window sill. My inner house-people, the younger ones who love baking and having a beautiful home, prick up their ears. My goth starts dreaming of painting poems on the doorframes, of wall chandeliers full of candles. I start dreaming of peaceful sleep.

In the early hours of this morning, while it was cool and I could move about without feeling ill, I begun the task of rearranging my studio. This time the entire room is being moved around a single, critical need: that I have only one form of refrigerated air conditioning in my unit, and it is the freestanding kind that needs to be vented out a window. Previously one of my art desks blocked the window entirely. I have also had a lot of trouble with the curtains. The hooks that hold up the curtains constantly snag on the netting behind them when I try to open or close them. If I pull too vigorously, the curtain rod falls down. The netting is too long for the window so it gets caught under anything I put under the desk, and the dog and cat get tangled in it when they try to look out the window, also pulling the curtain down. With the wide desk in front of the window I simply can’t easily open or close them, so they either live open and I vacate the studio once it’s dark and keep the door shut, or they live closed and I vacate the studio during the day. I once lived in a horrible bachelor pad where the house stank of mould from the bathroom, off food in the fridge or from various half finished meals left in bowls around the house, the blinds were rarely opened and the floor stuck to your feet. I was desperately unhappy and constantly trying to clean it up but when your flatmates are trashing it daily it’s not a happy place to be. I now particularly hate having the curtains drawn during the day. I tolerate it during extremely hot weather, but the rest of the time, if I’m out of bed, the curtains are opened. I crave and love the light when it’s there, and open windows letting in fresh air and the sound of birds and traffic and the far off trains.

So I’ve changed things around, freeing up the entire window, removed the netting, and changed one of the curtains. I was going to change both because the original blue were also only just wide enough to cover the window which also made life tricky, but I love the effect of one of each. In theory, once I’ve cleared away the rest of the mess, I should be able to wheel my air conditioner in there, shut the door, and make art in the cool.

It’s not perfect, both tables/desks are awkward sizes, one very long and one very wide, but I think for now it will work. Hopefully it will help me get back in there and get my fingers dirty, seeing the space with fresh eyes and reclaiming my constantly dimming sense of ownership over it can only be a good thing. Either way, it still feels good to have done something.

Recovery from Trauma – Touch

This has been a huge area for me, one I’ve had to re-negotiate throughout my life so far to try and find something that works for me. A lot of us who come through interpersonal trauma – where other people hurt us, are left with major struggles about touch. For me, I found that I’ve suffered when I’m touched, and I’ve suffered from being touch-starved. If you imagine for a moment that in your mind and body, there are three basic types of touch that you register and react to. One is touch that makes you feel good – a little baby holding on to your finger or a kiss from your lover or a hug from a friend. The next is touch that makes you feel bad, such as being hurt or invaded. The last is neutral touch, that doesn’t make you feel good or bad, inconsequential things like sitting against someone on the bus or brushing hands with a checkout operator handing you your bags.

I found this last category of touch collapsed completely for me and has been by far the hardest to get back. When I’m really struggling good touch goes too, but a lot of days when I can still enjoy good touch I can’t cope with neutral touch. I’m very sensitive to touch and it’s like my brain can’t work out how to handle neutral touch and does a very basic ‘what kind of touch is this?’ assessment that goes

    1. ‘does this feel good?’ 
    2. ‘no’ 
    3. right then – ‘BAD TOUCH’

I’ve had to talk myself through re building a sense of neutral touch. It rests on feeling reasonably safe and calm, and for me at least, part of a community. Strangers don’t bother me if I am feeling content and like we’re all just people. Being able to cope with neutral touch is an important key for me to cope with medical and dental appointments, travelling on public transport and in lifts, accessing crowded places, using supermarkets – basic functioning in life.

Touch is actually a crucially important aspect of being human. Newborns need touch after being born. Untouched, they will simply die. Touch changes us on a physiological level, massages support immune function and health for example. Touch is crucial in attachment, in bonding, and in social connection. Touch communicates affection, loathing, power, or love.

As a child and teenager I was ostracised and bullied at school. Touch became a key issue. I struggled to define moral responses to abuse and contempt. I developed a basic set of parameters – that until another person touched me, I would manage the situation verbally. If they initiated contact physically, then I would defend myself physically. It became generally known in the school that I was not to be touched. This decision was to some extent effective in that it relieved me of the chronic anxiety and distress around how I was to respond to relentless bullying. However the unintended downside of this was that I struggled alone, untouched and without comfort. Following a major trauma I was diagnosed with PTSD and in that space – traumatised, alienated, chronically suicidal, and devoured by nightmares, my world without touch became surreal and terrifying. I craved touch, longed to be hugged, my self-made wall designed for protection left me free-falling, alone and outcast. I no longer felt part of the world or of humanity, without touch to connect me. With no anchors, I floated into surreal dissociative states, feeling unreal and chronically numb, punctuated by intense fury, distress, and self loathing.

A few years ago, I turned up to the Mental Illness Fellowship SA activity centre. My life had burned down and I was extremely isolated at the time. I sat on a couch, nervous in a room full of strangers. Someone sat down next to me and I concentrated on not flinching. As I sat there stiffly and awkward and silent, the whole side of my body next to the stranger began to warm. This yearning for contact came unbidden from deep inside me and I realised how solitary my world had become. The loneliness was profound.

Touch is powerful, and for some of us, touch has been withheld and we have starved without it, or touch has been used to wound us and now we struggle to define our relationship with it. Touch often defines power in our relationships – I’ve felt trapped at times with people who refuse me the right to withdraw from touch I do not want. I’ve become more assertive these days as I’ve discovered that if I protect my right to control touch, then my relationship with touch becomes less ambivalent and stressed. My good friends know to check before hugs, and not to take it personally if I don’t want to be hugged that day. Likewise, I do this for them. Because of this, touch has more and more of a place in my life now, which delights me.

People who don’t get this and fight my right to choose who and when and how I am touched are usually excluded from my networks. Some of them are simply bullies. Some are too naturally dominating to consider someone else’s needs. Some are under the illusion that if they impose touch upon me, I will ‘realise’ that it is safe and my boundaries are silly and unnecessary. Some take a preference not to be touched as a personal insult to them. The occasional few are sadists who enjoy touching someone who clearly is uncomfortable with it but lacks the social power to tell them to stop. I have a strong commitment in my life now; that loneliness is better than torture. People who don’t respect me, don’t get close to me.

Developing that power and honouring that need to protect myself has given me a lot more freedom. If I trust myself to protect myself (and my system trusts me to protect them – no accepting hugs if they’re screaming inside me) then suddenly neutral touch isn’t such a big deal. I’m not small and powerless any more, I’m a member of the community. I have a voice and I can take care of myself, which means I can engage. I don’t have to hide, or run, or fight. I can be part of the world when I want to. I talk about the mental flip from seeing other people as inherently dangerous to just regular people in my article Using Public Transport. Here’s an example:

I was on the bus the other day and a man was standing in the aisle next to me when I noticed that he had a big mop of long fluffy white cat fur stuck to his nice dark pants! I suspect he has a lovely white persian cat at home that had been sleeping next to him on the couch. It suddenly flipped how I saw him – from being a threatening man standing too close to me, to just a regular guy with  a cat and not someone to be afraid of.

I crave this freedom. When the PTSD is too bad for me to handle crowds, strangers, confined spaces, being a passenger in someone else’s car, being out after dark, having other people in my home, being touched, new environments, loud environments, and so on, my world is very small, very painful, very lonely. I hate this place, it’s like being in a coffin.

There’s a thrill to being able to reclaim my place in the community. The more I protect myself and make myself feel safe, the more ‘risks’ I can take, like going to a concert I love. As I learn to reclaim touch it helps me manage experiences that typically are nightmares for me – like dental or medical appointments. It also frees me to have the ability to offer touch to someone else in need, to give a hug to a friend who is struggling or hold the hand of a psychiatric patient who is confused and distressed.

Touch is powerful. It can be my biggest trigger for anxiety and dissociation, such as when I get hugs following my talks at big conferences (see The Voices Vic Conference). It is also one of my strongest grounding techniques during anxiety attacks or major dissociative episodes. It’s a powerful way of communicating between people – acceptance, or rejection, affection or loathing, mutuality or domination. If touch is an area that has been damaged for you too, you can change how touch works in your life. You have the right to use it as a tool, to protect yourself from it, to seek out good touch, to be aware of the messages you send and accept through touch. There are more, and better, options than being touch starved or having to put up with touch that you find distressing and disempowering.

So it turns out I am a bat

I’ve been experimenting with my sleep patterns since I started the new job with Aceda 6 weeks ago. It has been a continual thorn in my side over the past 6 years that my sleep gears towards nocturnal. It started suddenly after the devastating break up of a long term relationship, I immediately went from being a very morning, waking up with the dawn to have a walk kind of person, to keeping company with the owls and bats.

Many things fed into this over the years, for a couple there I was totally nocturnal, unable to sleep at all until the dawn came and people started to wake up and go about their lives. I kept vigil all the long, lonely nights, baked scones, watched bizarre documentaries on SBS, wrote poetry, wept myself hoarse, and went for long walks when it rained and I figured I’d be the only mad one out on the streets.

When I was very sick with the chronic fatigue and fibro etc getting less than 9 hours would leave me trembling, vomiting, and massively dissociated. Insomnia cycles with nightmares were devastating physically and tipped me into psychosis. The usual treatments for sleep issues didn’t work at all, most sleeping meds do not work on me, the only one that does also leaves me dissociated and half out of my brain for days. Attempting to reset patterns by persistently getting out of bed in the morning and getting in the sun or taking melantonin only made me incredibly ill. I would crack long before any signs of sleep resetting would start.

So, I’ve been quite surprised to discover that I’ve been able to reset my patterns fairly easily over the past few weeks. I’m certainly physically far stronger than I have been, I can even handle one morning a week on a few hours sleep, and I’ve discovered recently there’s one part who seems to exist in a permanent hypo-manic state and doesn’t seem to notice even quite significant periods with little to no sleep. Slightly worrying but also incredibly useful when they’re around…

There’s been a downside I didn’t expect. My mental health isn’t coping with the change at all. Without my late night hours, there are a number of parts of my system who are not getting any time at all. We didn’t realise this. So many new realisations lately.

We are able to get by so much better than we used to in so many ways. One of the big things that has made a difference is the ability to contain distressed parts until we’re safe and alone. So often people say to me “I can’t believe you wrote that post about hating yourself, or painted that image about self harm, you don’t seem that way at all”. And I say back to them – “You haven’t met me at 3am”. How true that is. It’s such a constant surprise to me that people don’t pick that the confident, gracious person who steps onto the stage to read poems about savage pain cannot possibly have written them. When I was younger, triggers would floor me. Vulnerable parts would fall apart in public, switch out and hide in back rooms writing poetry in the journal we carried everywhere. Skinless and devastatingly sensitive we had no capacity to fit in, to conceal our difference or our pain. We’re still painfully raw at times, crying at work, missing the kinds of filters that adults seem to develop where you sit through movies untouched by the world within it. But we’re so much further along than we used to be, and it turns out a huge aspect of this is having hours at night, alone and uninterrupted by the rest of the world, to let out all of those suppressed feelings and those hidden parts.

How much of this is the difference between a child and an adult? How much of this is the distinction we draw between the crazy and the sane? The ‘sane’ still have the capacity to choke it down in public? Something left with which to conceal themselves? No sobbing on the bus, no poetry in the doctors office, mustn’t let them hear you scream…

I need my night hours to be mad. I crave my time in the sun, to be useful, to see friends, to study and work and live. But I need the night. It’s where I do my screaming, where I bleed ink, brew art, it’s the hours where the poems live and Narnia is close. It’s a difficult life to pull off, there’s too many mornings I can’t avoid being sleep deprived and up early, there’s the constant need for vigilence around things like driving and dissociation, cooking and dissociation – another nice burn on the inside of my arm from careless handling of a hot baking tray from a couple of days ago. There’s the risks of sleep deprivation which are serious. It’s a foot in two worlds kind of life, constantly frustrated by my inability to fit properly, to be entirely one thing or the other… It’s also a productive, fulfilling kind of life, sublime and mundane in their proper places, full of art, full of love, light and shadows, the dark and the bright of the moon.

It’s what I have to work with for now. So tonight, I’m a little tired, but I’m sitting up blogging again, past midnight where my thoughts suddenly become clear as snow melt and I feel at home. I belong here and I need this place.

The Dissociation Inc Is Official!

We’re registered as a legal entity now, all official and legit. The paperwork arrived in the post today, to much rejoicing!!

Next year some new plans and resources will start to be put into action with enthusiasm. In the meantime, we’re all learning a lot and working hard. Our two face to face groups are going really well and continue to grow and develop every month, providing support for some amazing people struggling with some really tough issues. Our online groups are also going great, our open group now has over 100 members! We are supporting more people with trans and diverse gender needs which is wonderful as that is another under-resourced high stigma area. We’re building bigger networks around Australia and some international too. Ticking along, ticking along. 🙂

New Journals

Finishing a journal is always a slightly fraught time. I need another journal like I need air, the anxiety spikes until I have one. Choosing one is difficult for a multiple. We generally all write in the same journal, except for when writing at the computer, or out and about on buses etc when we write in an Evernote app on the phone. This means each journal needs to be acceptable to everyone in the system, else some will refuse to write in it. Sometimes journals get abandoned part way through for this reason. A single journal just makes tracking down a particular bit of writing so much easier than looking through 15 journals that each cover many years. Most of my journals cover a few months to a year depending on their size. I have over 30 now, as I’ve been writing since 14.

This time we decided to buy a bunch at once. Maybe they wont have to be so exact if there’s a collection of other types waiting to be used next.

The next thing then is to find some more time to write in them. I keep adding new things into my life and I’m watching the overflow spill out. Poetry cannot become one of those things that spills.

Multiplicity – Rapid switching

‘Cascade switching’ is a term I coined after watching someone with multiplicity do an incredibly rapid series of switches over the course of a conversation. I’ve experienced it only a few times myself and I really hate it. Multiples are very different from each other when it comes to things like switching. Some switch frequently, some very infrequently. For some multiples switching a few times in a week would be highly unusual. For others switching a few times an hour is quite normal. I lean more towards the latter. It’s quite normal (hah) for me to switch all through my day, even if one is mostly out over a week, others will tend to peek out here and there, even if it’s just a young one noticing the jar of cookies in the cupboard or being distracted by little kids running around on tv.

Cascade switching is something else. It’s switching so fast and so frequently that it feels and looks something like shuffling through a deck of cards face up, almost too quickly to register what’s on each card. I’ve noticed that it seems to have been triggered in the cases I’ve seen by huge news that impacts everyone in the system (eg news of a death in the family), by encountering a situation that no one in the system can handle, so the switching just speeds up and becomes chaotic, or, as in my case, by the start of a new relationship. I’ve also done this when I’ve been under threat in dangerous therapeutic relationships.

It’s deeply unsettling, I’m switching from one sentence to the next, or even part way through sentences. My ability to track information is overtaxed by the chaos, and breaks down. We can’t tell who is out anymore, what we were doing, who we are with, even what year it is. The dissociation becomes overwhelming and I feel like I’m drowning blind and can’t even tell what way to swim to get to air.

For some multiples this is a common occurance. Their systems are highly fluid, parts constantly changing, disappearing, new ones being formed. Their experience of life is so chaotic and dangerous that their system doesn’t settle into a stable pattern but stays in a state of turbulence. Stability hasn’t served them for survival so they gear towards flux instead. These people are often not diagnosed as multiples because the DSM concept of DID presumes stability.

I’m settling down finally which is great. It’s been a few weeks of cascade switching with the occasional stable day or evening around my girlfriend, but that’s settling more into my usual patterns of at least having someone out for an hour or so. Not to mention that’s making it a bit easier for her to work out what’s going on or have some capacity to predict how I’ll react to her. I’ve been trying to unpick what’s driving it for me and I’ve been able to pin down a few things. One is that most of my system are keen to meet her. Another is anxiety about forming a ‘one-part bond’. Most of my friendships used to be this kind of bond, a few still are – where the connection is only to one part and no one else in my system thinks of that person as a friend, or even recognises them. (this makes life awkward when you run into people unexpectedly, that blank confusion that always makes me feel broken and ashamed) This is not what I want, because we are all parts rather than entirely separate people, we are all missing information about our life, and also missing skill sets. We are vulnerable to bad dynamics and painful relationships when only one part is involved and making decisions. We make much better decisions as a team. For a really important relationship like a romance, it’s even more crucial that everyone in my system is aware, involved, and has a voice in what’s happening. That doesn’t mean that the kind of relationship is the same with all the parts, but that there is a relationship of some kind being developed. So I think anxiety about that has been pushing up the switching – whenever one part is out for a while and things are stable, the anxiety spikes and the switching amps up. The downside is that cascade switching is so stressful and confusing that it’s very difficult to navigate a relationship with someone in the grip of it.

Pacing seems to be helping me get out of it. The obsessive focus you feel in a new relationship is delicious – you want not just to be with them all the time, but to climb under their skin, into their mind, investigate and submerge yourself… But the dating, the meet and part and meet again cycle is helping me settle back into my own cycles. Making the effort to keep the same part around for an hour or the whole night – then making the effort to have another part who wants to connect or communicate be present next time, we’re slowing down and things are becoming clearer. Trying to find a middle ground between adapting to another person where switches are triggered by how they are and what they need, and the kind of switching we do alone where they are entirely generated by our own needs… that’s a huge challenge! I can do one or the other, but trying to meld something between is a complex ask. A whole new kind of dance.

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.