Using language to support parent infant bonding

Language is so powerful. When Poppy was born we found many people would frame our experiences or her behaviour in ways that were not helpful for us. It’s amazing how many of our common phrases ascribe bad intentions to the child. It may seem like nit picking to fuss over a word, but words build the story that impacts how we understand each other. They create the filter through which we interpret each others intentions.

I first learned about attribution theory in uni, studying psychology, and a lot of things clicked in my mind about people I’d known. Most anyone when depressed or overwhelmed sees the world and other people through a filter that makes the innocuous seem hostile and the mildly difficult downright sinister. Some of us are more prone to this more of the time, living in a world where grey runs to black. How we feel can strongly change the way we interpret others and the world around us.

Many of the stories created by common phrases used about children would pit Poppy against us, as if she was indifferent or even cruel. People would say things like she was “being a jerk” if she wouldn’t stop crying, was “too smart for her own good” if she climbed something and fell off, “had us wrapped around her little finger” if we went to comfort her after she fell over.

On one level this is a way to be light-hearted about the stress of parenting, laugh it off, and validate how awful and exhausting it can be! But for some, in the context of stress and sleep deprivation, this can also take the relationship between parent and child into dark and risky places.

It can be difficult to understand just how painful things can get if you haven’t been there. In the early months of Poppy’s life, I was often sick, very sleep deprived, and feeling at the end of my tether. I’ve noticed that a kind of flip in thinking can happen when things are really bad. If you feel stretched past capacity enough, at some point it feels like it’s not possible for everyone to survive. Survival instinct and maternal instinct start to contradict each other. The maternal (or parental) impulse to protect and nurture is powerful and we tend to see it as the norm. But it’s not always the way, and when threat levels are high and bonding is distorted it may diminish or become secondary. The impulse to protect the child may dissipate next to the sense that there’s simply not enough resources for everyone.

Things can get really desperate if the child’s behaviour is framed as a threat in some way to your own survival. The shift in thinking from ‘we are all in this together, having a tough time’ to ‘they are sucking me dry’ is a risky one both for the relationship and the child.

This interesting article, the neuroscience of calming baby explores what’s going on behind a common phenomenon – babies are calmer when carried and held but will often become distressed when put down. It talks briefly about how important it is to understand that this is an inbuilt mammalian response, to “save parents from misreading the restart of crying as the intention of the infant to control the parents”. Soberingly, this is important because “unsoothable crying is a major risk factor for child abuse”. This is not in any way to blame a child for being harmed, or to excuse harm done to children. It is to examine the context in which otherwise devoted, well intentioned parents can find themselves struggling with furious impulses or not coping.

Ascribing bad intentions to a baby starts to activate a sense of threat, that the child is wilfully harming the parent, deliberately denying them basic needs of food, sleep, and relief from distress. When bonding is good and parent needs are getting met, these things don’t matter so much. But in harder times they can contribute to a sense of being tortured by the child rather than by the circumstances. It’s desperately important to see a child’s distress as distress rather than an attempt to control, manipulate, or do harm. Language is part of how we do this, helping to interpret and contextualise so we don’t distort what we’re experiencing.

It’s also critical not to set up impossible expectations such as “when you cry I will make it better for you” with a child. Overburdened by this sense of responsibility, parents are at risk of feeling intense distress in the form of failure, agitation, and frustration if confronted by distress they cannot sooothe or silence.

Rose and I translated a lot of common sayings when we encountered them. Someone would say to us things like:

  • “She’s fighting sleep” and we would agree but shift the intention- “yes, she’s struggling to sleep today”
  • “She’s not a very good baby” becomes “she’s having a hard time settling at the moment”
  • “She’s got you wrapped around her little finger” becomes “she sure is a little cuddle-bug”

This was incredibly helpful for me in a few instances where I was struggling. In early weeks I was prodromal (warning signs of psychosis) partly due to severe sleep deprivation. I would get Poppy confused with Tamlorn, the little one I miscarried. Rose and I would tag team Poppy all night to give each other some sleep. There have been times I’ve handed Poppy over in sobbing distress and Rose has taken her out for a morning drive because my nerves are shredded by her crying and my nipples are mangled from her biting and I’m losing it.

It makes a difference to understand that Poppy is behaving as she is supposed to, not to harm me. Human babies often want to be held all the time and use crying to signal fear, pain, hunger and every need they have. It’s also a biological norm for infant crying to send us round the twist, and being able to see our own limits coming up without hating ourselves for them is valuable. Infant needs can be more than a parent can meet, or impossible to understand at times. Nurtured infants need nurtured parents and few of have invested in those kinds of communities before bringing a baby into the world.

Parent needs are deeply important to meet in order to buffer that sense of threat and reduce the fight/flight response being activated in distress. Staying out of crisis mode is partly achieved by treating adult needs as real and significant, and using language wisely to tell the most helpful story about the situation.

So we found it helpful to say ‘squeaking’ instead of ‘screaming’ for example. “Our little person is squeaking again” sounded less dramatic and helped us keep perspective. We talked about “witching hour” and planned around the time every evening that Poppy would be overwhelmed and inconsolable. We used baby wearing to manage her desire to be close in a way that reduced our fatigue and back pain, learned how to rest her face on our shoulder so her screaming didn’t go right into our ear, and use as a mantra “I’m here with you, you’re not alone” in place of wanting to fix it when nothing was working.

In our case, ‘colic’ was managed by reducing stimulation. The lights went off every night at 6pm, Poppy had a warm bath as soon as she started becoming distressed, and we didn’t go out in the evening for many months until she passed through the phase.

Language is a big part of what helped us navigate these huge challenges well. The risk of psychosis in the early days, serious difficulties with breastfeeding, and a baby with undiagnosed functional lactose overload and colic caused by sensory overwhelm. Combined with 2 deaths in the family and a range of illnesses for Rose and I, it was not an easy start. We were and are ecstatic to have Poppy, she is an absolutely beautiful, loving, curious, adventurous child. Tending to the stories we told and the language we used helped us to bond together during those difficult times.

Many creative projects

I made it into my studio for a few precious hours today. I bought this lovely drying rack for hanging wet artworks, and worked more on my illustrated poem project. You can see some of the pages drying on the new rack here:

I have been often ill lately with high pain levels and have not had as much art time as I’d hoped. The top priorities I’m keeping up with: my time with family, my studies, work gigs of various kinds.

I was very pleased to collaborate recently with the Greens SA and paint creatures of the Great Australian Bight during a listening post. Illustrating campaigns that are close to my heart is a special joy.

I was also honoured to be part of a panel at Uni SA about alternative responses to psychosis. I spoke from my Psychosis without Destruction perspective. I gave a brief illustrated presentation using journal entries from my first two episodes, and the body painting I did during my second episode which resolved it.

I am keeping up with my public health studies and learning French. I’ve just handed in an assignment exploring the social determinants of health and proposing an intervention intended to reduce cardiovascular illness for people with severe mental illness.

I was planning an exhibition for my birthday but I’m going to push it back a month or so and see how my health goes. I’m happy with my priorities right now. Family, study, and work are all going well and art and other projects fit in where and as I can. ūüíú

SA Film Screening ‘Healing Voices’

If you’re a South Australian local and interested in mental health, this Friday April 29th is a free/gold coin donation film screening you’ll probably be interested in. All the details in the Hearing Voices Network of SA newsletter here.

First newsletter out in almost a year… Haven’t done one for the DI for the same amount of time. I miss my networks. I wish I could get paid for running them, and wish I had my little team of three to bounce ideas around with… as I’m getting back on my feet and having to pay for domain names being annually renewed and suchlike I’m starting to think more about what to do next and how to support these. Friends came over last night for the most wonderful campfire evening and it was so lovely… and made me miss being able to hang out with my local hearing voices group around a campfire without all the politics and crap about who is allowed to be friends with who… I deserve to be paid for my work, and I have the right to identify as I truly am and be friends with people from whichever category I wish.

I don’t know what the way forwards is yet, but I’m starting to be able to think about it again without being overwhelmed by a sense of failure, anger, pain and loss. Maybe that’s what the Waiting for You¬†exhibition has done for me – given me a sense of having a place somewhere in the world. Maybe I was never meant to live in the world of mental health the way I was trying to build my career. Maybe there’s a home for me in art and a way to do this work that doesn’t exhaust and exploit me or force me to compromise my values. Maybe…

I don’t know. Nothing has worked so far. But I’m learning, through each loss and each dashed dream. I’m trying different approaches. I’ll unlock that door and crack it open a tiny bit, and back away quietly. Maybe some idea will come to me about how to grow these precious networks. Or maybe I’ll find some other, more sustainable way to make a difference in the world.

Poem – At the end

Day one of the ISPS conference on psychosis is over. I’ve wept, I’ve met many new people, I’ve made friends, shared ideas, had paradigms challenged, found support, listened, learned, talked, shone, and soaked up all within reach of me. I’m back in bed now, dazed, sleep deprived, and changing gear. Poetry is a good place to come back to when you’re feeling skinless, so:

We have blazed brightly and now
At the end, alone in the dim
Comes the haunting fragility – the nakedness
Away from the theatre, from the pagentry
The balloons deflate
Not because it is not real
But because life cannot always be the lights and noise,
The parade of new fascinating people,
The urgent connections, sudden introductions, immediate revelations…

Thankfully.

I’ve lost count of how many people I’ve told today that I’m sometimes psychotic or always multiple.
Or shared unfinished thoughts with, not polished and perfected but still forming
How many times I’ve stood tall in my boots, grasped firmly my right to be here, to have a voice, an opinion, an experience, a right also to hear, to be part of these precious conversations, to drink from the cup of privileged knowledge.
To be grateful and enlightened.

And now?
I’ve gorged on food too rich for my spirit.
At some point even the largest, most gluttonous python must go into a cave,
Sleep in the dark and digest.

Now my boots lie empty beside the bed. I’m alone and naked in the darkness
Shedding all the roles like skin
I’m no one again, and glad for it.
I leave the world to Atlas and go to bed.
Tomorrow the sun will rise without me
The world will be beautiful and horrific and I’ll play no part in either, for just a few hours.

Shivering in the cold,
My soul slowly wanders back into my body,
Tremulous and tender, silent and gentle
Like a small creature, I feel it curling round,
Patting down the ground of me with tiny paws,
Making a bed of me to sleep.
How blessed I am to have such a soul
To lie here trembling with it
Listening to its silent, bewildered language
Watching the dreams come in, like fog feeling its way blindly over the bay.

Everything sings to me

I’m in the zone, powering through my mammoth workload with fierce joy. I’m currently hand sewing an art book about grieving unborn children.

I watched Mad Max 4 yesterday in 3D at the cinemas… I’m so broke but I think I’m going back to see it again. It was stunning. The cinematography, direction, visuals, and sound were superb… visual poetry with an impressive philosophy and psychology. I was enchanted. I felt something click in my head, one of my frameworks about life gently get the last piece needed. Something closed over and I exhaled with a sense of peace. The world makes sense. It’s not okay, it’s not all answered, I haven’t found the truth or understood every question, but a sense of total disconnection and bewilderment that has been with me all my life suddenly healed over.

I’m flying.

My midnight and my noonday are close enough to spark life between them. The sublime and the domestic burst into each other with abundance. I’ve bridged a gap between the internal and external.

It’s like I can run after spending my whole life dragging a ball and chain behind me.¬†I feel so alive and so free. My mind is so clear. Everything sings to me, everything speaks to me. I turn the radio up loud and sing in the car when I’m driving. I can feel the touch on my skin when I think of my favourite scenes from Mad Max, but it’s not psychotic or deranged. The stars sing to me, my bones sing to me. The world is full of life and it makes sense to me. Everything speaks in its own language and I’m spinning with the whirl of stars, grasping life to me with passion. It’s not a mind puzzle solved in disconnection, it’s felt in the body, it’s experienced in the soul. I breathe and the world breathes into me, through me. I’m not disconnected any more, not set apart, not broken by the contradictions. I feel like I’ve swallowed the planet, my heart finally big enough.

There’s no glass. No railway tracks. No rules I can’t break, should I choose to. I am apart from it all, all the fences and the traps. I am a little bag of skin, sewn over dreams, painfully fragile, singing with life. I’ve drunk many bitter cups to taste this sweetness. I’ve loved and been broken by love. I’ve faced the things that hunted me in the night, made some peace with my ghosts.

My voice, my lovely anguished voice, she is transformed. She infuses with me something beautiful that is not voice, that is a language without words. The void is outside me, not within. The shadows are populated, my ignorance stretches before me like a vast unknown land full of terror and possibility. We are Sarah. I know my own name, I know who I am. I have seen through to the bones of life, I have seen the joke and I can’t help but laugh. Agony and beauty, spun together. The anguish is not gone. I am not safe. I am not safe and yet there is this freedom, this song in me. The world it screams and it sings and I can hear it all.

Free Talk by me – Psychosis without Destruction

I am offering a talk in May to share my personal experiences of psychosis and suggest options and resources for people to draw on. So often in mental health we are simply lamenting the lack of funds and resources, especially for those in the country. I want to talk about a situation that is usually an acute crisis needing inpatient treatment and help people create tools to manage safely at home as much as possible. There will be resources to take home and an opportunity to ask questions at the end or privately via email.

This talk is suitable for people with lived experience of psychosis, as well as friends and family, and mental health staff working to maximise supports with limited resources. If you find it useful, I am happy to discuss delivering an appropriate version of this talk to your group or organisation.

For so many people, psychotic episodes are profoundly destructive. Recovery is often a complex process of grieving and repairing damage done to relationships, career, and stable life choices. Sarah is an artist, writer and peer worker who considers herself very fortunate to have already been familiar with diverse approaches to psychosis when she had her first episode. She’s navigated psychosis and prodromal phases successfully at home with peer support, without meds, and without the kind of widespread destruction so commonly part of these experiences. Sarah is a prolific blogger who shares art and writing throughout her episodes. Come and learn about the ideas that have informed her approach, and have the rare chance to hear an articulate, intimate account of psychosis from the inside.

This is a FREE forum at
Mifsa – The Mental Illness Fellowship of SA
5 Cooke Terrace, Wayville SA
1.30 – 3pm
Wednesday, May 27th

RSVP essential – to reception: 8378 4100

For a flyer you can print or share see here.

When sanity is lethal and madness has value

I’ve been thinking a lot lately about our cultural ideas of sanity. Being sane is seen to be about living in reality, or what we call ‘the real world’. Children naturally only partly live in the real world. They experience, interpret, and believe many things that would be considered psychotic in an adult, flights of fancy such as imaginary friends. Artists are generally not considered to¬†live in the real world much either, but for most adults it’s mandatory and something we spend a lot of time teaching our kids to do. This is linked to some pretty harmful ideas about¬†growing up. ¬†It’s also generally the goal for people with ‘mental illnesses’.

I don’t think we do live in the real world.¬†We talk about it, we make assumptions about it, we share in a mass set of beliefs¬†we call ‘reality’, and we’ve built a mental health system on the idea that not only is there a shared reality, it’s also easy to define, simple to determine who isn’t connected to it any more, and that sanity and mental health is about people believing in it again. I disagree!

I don’t believe ‘the real world’ is reality. (Of course, that’s hardly definitive. According to most of the doctors I’ve seen, I have some collection of mental illnesses. The actual collection differs from doctor to doctor, and the implied level of insanity with it, but the general consensus has certainly been that I’m no poster child for the well adjusted and sane.)

Of all my family, I have the most significant list of mental illnesses, and on paper am apparently far less in contact with reality than the rest. But it’s not difficult for me to gather evidence that suggests something else entirely! At times, I’ve been the one left standing and keeping people safe through chaos, or the one who was able to see danger coming and put things in place to deal with it, or the one who went and found what we needed to make decisions and stay alive. Crises have both harmed me and taken me out of the role of the ‘sick one’ and thinking that multiplicity was the worst thing in the world.

We don’t overtly use words like madness a lot in mental health these days, but scratch the surface and you can quickly find that the premises underlie a great many of our ideas and assumptions. We now have the rather inadequate¬†terms ‘mental illness’ and ‘mental health’ as part of the medical model re-visioning of psychological states. They are direct stand-ins for the concepts of madness and sanity, especially in the field of psychosis, with a veneer of ideas around non-culpability and potential cure. Let’s think about them for a minute. What are they? If sane is about being in contact with reality, living in the real world, madness is seen as the opposite. Loss of contact with reality. Distress, confusion, delusions, hallucinations, bizarre beliefs and behaviour. Not living in the real world any more.

Madness and sanity are presumed to be opposite states, on a spectrum of intensity. Doctors treat the severely or moderately mentally ill in the hopes of restoring them to at least mild levels of mental health. Psychiatrists and treating registrars make calls of madness and sanity in brief interviews with often heavily medicated and highly distressed people. The results can be almost comic in their fallibility. Eleanor Longden tells the story of a time she was sectioned as psychotic when a doctor thought her mention of her upcoming work on a local radio station was a grandiose delusion. Her understandable distress at being so profoundly misjudged was taken as further evidence of her mental illness. It’s a closed loop; the normal emotional responses to being assessed as crazy are used as proof you are, in fact, crazy.

And yet, most of us share a terror of madness. It’s one of the primary reasons people seek help, and are relieved by a diagnosis – “there’s a name for it! I though I was just going mad!” We are driven mad when people think we are mad. It terrifies and distresses us and we will go to great lengths to convince people we are not. This behaviour is the same for people are psychotic or simply misunderstood, and yet in the former it is assessed as anosognosia (lack of insight) when in fact it is an intact, normal response to being seen as mad that most people will have in those circumstances. Those who embrace that they have become mad are usually, at least for a time, crushed by it. It is a state that is utterly without value, completely terrifying, and puts people into a whole new class of humans who can swiftly lose many basic rights about their lives and medical care. Having been assessed as mad, even calm, normal human behaviour is distorted through a lens that amplifies diversity, individuality, and departure from the obedient patient roles and interprets it all as further madness. (See the Rosenhan experiments) The cost to a person’s credibility is high, and can be extremely difficult to restore.

Think about what this actually means.¬†We have a massive collection of people employed in our police department specifically to try and figure out what reality is when there’s a possibility someone has been injured or laws have been broken. We have entire complex branches of science dedicated to determining different tiny detailed aspects of the nature of the world we live in. They regularly disagree with one another and update new theories as old ones are disproved. We have an entire judiciary system structured on the understanding that knowing the truth of a situation can be extraordinarily difficult and complex. The whole history of philosophical thought examines the nature of reality and finds that even defining the concept is astonishingly challenging. It’s difficult to find any three people on the planet with completely identical beliefs about the world and their place in it.

And yet, we sit a doctor and a patient down in a room, and assume the doctor can determine reality and can pronounce madness and sanity with excellent accuracy. Wow. Who are these marvels of discernment? They are us. Doctors, psychologists and psychiatrists have similar if not higher rates of ‘mental illness’, trauma histories, job burnout, and suicide, than the rest of the human population. They contain the same qualities we find in every other person doing a job – some highly skilled and insightful, some mediocre and clock-watching, some true scum bags. And yet we, as a whole culture, invest in the illusion that not only is reality easy to define, but that these people are experts in doing so. In fact, their testimony is frequently relied upon in situations such as custody battles. The presumption that they are sane, and highly skilled at determining not only what reality is, but also sanity: who is ‘in touch’ with reality, is infrequently challenged. In many situations, merely challenging these assumptions is itself seen as evidence of madness. A considerable number of patients stress tremendously about their ‘trust issues’ when they struggle to connect with their shrinks, when in no other context would we expect people to share with a complete stranger who is not likewise vulnerable and has established no trustworthiness beyond attaining a degree. My assessment is that there’s little sanity in any of these processes.

I believe that I am, like most people, both mad and sane. I don’t find the terms mutually exclusive. As for ‘the real world’? I would go a step further and argue that this idea is partly what drives my pain and dysfunction, and that my sanity often resides in refusing to believe in it. Lets look at trauma for a moment. We as a community believe a collection of things that are not true, but that are convenient to believe. For example, here in a first world country, we often believe that if we are decent people, we will be mostly safe from harm. Many of our child raising techniques are overtly designed to create and preserve this belief in children. Our sense of security rests on an illusionary contract with the world at large. This is what a horrific trauma incident can shatter. Having upheld¬†our end of the bargain, our sense of safety is utterly destroyed when a violent, terrifying incident reveals that the world isn’t playing by our rules. We are devastated by our loss, overwhelmed by intense grief for a world we no longer feel a part of, and given the arduous task of rebuilding a sense of security in our new reality where we can’t always stop truly horrible things from happening. It’s a deeply personal experience of the scientific process of testing a hypothesis, finding it is terribly flawed, and having to devise a new one, preferably one we can live with, and even better, in some way explain to others.

The tension for people in this situation is that it’s not uncommon for the people around them to still believe in the very illusion they’ve just had shattered. Their idea of the ‘real world’ has not been destroyed by a personal confrontation with mortality, horror, and vulnerability. Their idea of sanity is to maintain a belief system that the traumatised person can simply no longer subscribe to. The traumatised person is newly exposed to the experience of helplessness and profound injustice. Their perceptions of risk are disproportionately high as they lack the buffering of any sense of emotional security. Aware that they are partly irrational, it is easy for them to subscribe to the idea that sanity is about restoring their old beliefs, so that they can once more grasp the emotional security their friends still enjoy. The bone-deep emotional reality of their experience will fight every attempt to re-instate the old beliefs through depression, distress, and other involuntary trauma reactions. Hence the war inside someone who has been traumatised, has been sold the idea that ‘going back to the way they used to be’ is how they will become healthier, and who is now fighting their own experiences and emotions in the hopes of restoring themselves to sanity.

What we call ‘the real world’ is not only more challenging to define than we have treated it, but it’s sometime actually the problem. I had a lovely friend called Amanda who killed herself. At her funeral, a theme that came up over and over again was one of failure. Diagnosed with bipolar, Amanda crashed and burned at just the time her peers were finding their wings. Struggling with university, struggling to work, to live independently, to attain any of the goals that had been set for her, Amanda drowned in a sense of failure. As someone who’s highest educational achievement to date has been a cert 4, who lives on welfare, in public housing, a mere disability statistic, I can empathise. Of course, this view of her and I isn’t reality. The reality is, we are each important members of complex social networks, highly skilled, compassionate, and primarily ‘disabled’ not through our challenges but because we live in a post-industrial society where we must be able to work reliably at certain days and hours each week, and where our public identity and sense of personal success relies on being able to secure and maintain such work. The ‘failure’ is not ours, yet we and people like us bear a terribly burden, often mistakenly equating our skills and intelligence with our mental health and doubting that we are genuinely disabled. We are haunted by fear that really, we are just weak, lazy, or useless. ‘The real world’ is that Amanda had failed and was continuing to fail. The reality is that she was amazing and deeply important and her life was beautiful and meaningful and lived with kindness, humour, and depth, and that she is profoundly missed.

I’m not naive. I’m very familiar with the world of psychosis. I’ve tried to calm people who are distraught because of hallucinations that are terrifying them. I’m well aware that many of us have a basic, blunt instrument kind of discernment of when someone is wildly delusional or hallucinating. The poor young man terrified that his neighbours are trying to poison him, the woman convinced she can fly from the top of the 9 story car park, the new Mum terrified of her growing conviction that her infant is evil. Buddhist philosophers may debate the nature of reality but they still look both ways before crossing the road. At times this may be very simple – I know the woman cannot fly and will be hurt or killed if she tries. At other times it only seems simple – the quiet young man, well dressed, with a job, and a calm gaze, is sane. The young woman huddled under the rug, weeping and tearing out her hair is mad. What the police and the paramedics cannot know, and the woman cannot articulate, is that the young man has been emotionally torturing her for months, and that night raped her when she refused to have sex, then used her distress and prior diagnoses to have her committed and discredit any possible allegations she might bring against him later on. This sort of thing happens. It happens more than we think. And when it happens often enough, the traumatised person loses the ability to tell their story, the credibility to be believed, and sometimes even the memory of what lies beneath their ‘madness’ and pain.

There is really no greater power in the world than to be the person who determines what is real and who is sane. And yet we wield this power so thoughtlessly, so convinced that good intentions will protect the vulnerable from exploitation and the powerful from corruption. This is naivete.

Sanity is relative.

It depends on who has who locked in what cage.

-CS Lewis

Reality is determined by the powerful. The powerful are not necessarily sane, they are merely powerful. Their ideas have popular traction and become what we think of as ‘normal’ or as ‘the real world’. The ‘real world’ once told me that I was poor, white trash living in a caravan park, fallen so far from my sterling academic success and the expectations of my school and family. To dig my way out of the pit, out of the catastrophic effect this had on my identity, self esteem, and hope, I had to reject this version of reality and construct my own. I had¬†to connect with a different idea of success and find a new way to evaluate my life. Stumbling onto this power – to define my own life, my own reality, and make my own choices, saved me. It is still saving me. While sometimes our beliefs can threaten or destroy our lives – I know people who have tried to kill themselves, kill someone else, who became homeless, refused food, and many seriously destructive behaviours because of their beliefs – our basic need to be the architect of those beliefs remains. We are harmed when we are instructed or forced to substitute someone else’s ideas about reality for our own. When we’ve had our trust in our own beliefs taken from us, we lose something critical. The loss of it can drive us further into madness, or it can flatland our life as we remain fearful of our thoughts and mind and totally dependant on outside sources of information. Collaboration with outside sources is often useful, it’s the substitution of another’s ideas for any of our own that so disempowers.

Here’s the thing; I also know of people who are considered to be entirely sane who have tried to kill themselves, or others, who work jobs they hate, see family who make them miserable, enact policies that destroy people’s lives. Many of them are people who consider themselves to live ‘in the real world’ and think that because they do not hallucinate and at times I do, that they are saner than I am.

We are all philosophers and scientists, making sense of our own lives, coming up with theories, trading them in, building new ideas. When we build the myth that reality is fixed and easy to define, and that sanity is about consensus and submission to a group belief, we take away from people their most fundamental power to make sense of their own world. It is a violence, even when done with kindness. Collaboration and relationship are where we best seem to make sense of the world. It doesn’t take much imagination to realise that every person on earth believes some ideas that someone else considers to be madness. Simply imagine your most difficult family member being invested with the power to decide what is reality¬†and who is sane, put them in the judge box, and justify¬†your life choices and beliefs to them. There’s no way you’re going to come through stamped ‘sane’. The same is probably true of every family member or friend you have, to some degree. This is diversity.

I’m often asked to define reality. Even in my low position as a peer worker in mental health, people invest me with the power to tell them what is real. They come to me after talks and ask me if their behaviour is ‘normal’, which considering I’ve often just been describing my own so-called wildly abnormal behaviour (living as a multiple), is a curious expression of trust in my capacity to delineate between reality and madness, and an even curiouser idea that I am here to police their reality. I’ve spoken with people who have a spiritual understanding of the origin of their multiplicity (such as having a part that is the spirit of a dead family member) who’ve asked me if it’s real or not. I’ve been reported as abusive by a woman suffering with paranoia who was convinced I was hacking into her personal life to stalk her. I’ve instigated the forced hospitalisation of a person who had recently become homeless due to their unusual beliefs, and who I assessed to be at very high risk of assault or exploitation. I still consider that act of reporting to be an assault, and the person in question has never forgiven me. It was an incredibly difficult decision. I’m still uncertain about it, distressed and regretful and also far more aware of the horrific decisions like this so many people have to make on a regular basis.

It’s incredibly important to define what is real in some contexts, and almost impossible to in others. People are all both sane and mad. We all share some aspects of reality and have other experiences, quirks, passions and desires that are entirely our own unique way of being in the world. Something terrifying happens when we make social constructs ‘the real world’ and think they are reality. Reality is did you hit him or not? It is physical and measurable. It is not about the constructs that make up our ideas about ‘the real world’. It is not a flatland of emotional deprivation. It can exist alongside psychosis and dreams and surreal experiences. It is not freedom from pain. If you are human and alive, then you will sometimes suffer. You will have your heart broken, you will lose people you love, you will have dreams crushed. You will need to weep and scream and hurt. That’s a side of sanity we don’t talk much about.

So here’s a side of madness we don’t hear much about either: madness; our unique perspective and experience of life, is like fire, a great gift with destructive potential. Madness is part of reality, part of our sanity. It can protect us. Madness is disagreeing with ‘the real world’ and the way things are always done. Madness can be breaking out of roles and expectations and doing what’s actually meaningful to you. Madness can be joyful exuberance and childlike magic. Madness can be dancing in the rain, or communing with God, or sitting on the roof and watching the stars fall. It’s the sublime. It’s the things we don’t have words for. In some situations, sanity is a threat to our hope, our emotional stability, and our lives. Sometimes it’s sane to give up, to hate, to shut down, to want to die. Sometimes madness saves us.

little spark of madness

Art with friends

I had the most relaxing evening last night, showing a couple of friends the basics of painting with inks.

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It was wonderful. We discussed the possibility of starting a local art mental health group, I’m kinda keen, but also busy and needing to earn money, so it’s a hard call. It was really fun though.

In other news I’m doing free local talks and meets around Adelaide and I’d love to see you at one of them! More details in the newsletter from the Hearing Voices Network of SA: Dates to meet in SA, free events

Prodromal

Well, yesterday was trippy. I’ve identified that I’m currently prodromal, that is, vulnerable to developing psychosis. Well hurrah. I thought I’d got through enough of the surgery recovery to no longer be at risk, but apparently not. I’m allergic to anaesthetic and opiates, and I don’t tolerate antibiotics particularly well. The last few weeks I’ve had way too much of all of them. Psychosis is a symptom of liver stress. The hospital was supposed to check on my liver with a blood test before sending me home but the doctor who discharged me was a… was in a hurry and couldn’t be bothered. Rose took me to the GP a couple of days later but he couldn’t draw any blood from me. I haven’t been able to get to a blood centre since. So I’m assuming my liver is bouncing back as usual but don’t really know.

Yesterday was hot (38) and I was exhausted after working on the weekend. I spent the day hoping to be able to get to my night class at college and feeling increasingly despondent as pain levels and exhaustion stayed high. In the end I decided that if I moved slowly enough I could manage it. So I got dressed and headed out on the bus. That’s three of my risk factors right there: heat stress, liver stress, and exhaustion.

There’s about a 700m walk from the bus stop to college, through town. This was almost beyond me, particularly in the warm weather. I took it slowly and accepted I might be late, and brought coins to buy a cold milk chocolate from the canteen once I arrived.

On the way I passed the strangest sight. A considerable amount of blood was spoiled in the gutter and dripped onto the sidewalk. It was dark and fresh, not yet congealed. Head wound kind of blood spill. I looked around but couldn’t see anyone injured. The crowds were all rushing to get home from work, I’m the only one who stopped. There were footprints tracking the blood over the pavement. It was such a jarring sight, so unexpected and dramatic it felt like it jarred me out of sync with everything else.

That’s a familiar feeling.

I had a big reaction to the blood, similar to the one I usually have to needles. That’s new. I could see blood on my hand and my head got very noisy suddenly. I tried to conjure the soothing images I used to manage the drips in hospital recently, not only couldn’t I hold the images steady in my mind but they dissolved and transformed into drowned children on a moor. Distress compounded – the old story – a trigger, a trauma reaction, and panic about the trauma reaction. I was seriously stressed at the prospect that my needle issue seems to have spread to a major reaction to the sight of blood also. I managed to strangle that train of thought as not helpful at that point, and talked myself down out of a panic attack. I limped on to class. The sense of being out of sync persisted as did a sense of high agitation.

I bought chocolate milk and soft banana bread. Food and drink are very important for reducing psychosis! I sat in the air conditioned room and the lecture began. Unfortunately we were studying the shift from neoclassicism to romanticism and a number of the slides were highly disturbing artworks such as Goya’s war prints. I find these moving and distressing when I’m not triggered. In an existing state of high arousal they were intolerable. I was struck by how little we talk in mental health about managing agitation when that’s often the precipitating aspect of crisis. It’s despair plus agitation that’s so dangerous, mania plus agitation, anxiety plus agitation. Is also one of the experiences the mental health system is so so poor at managing. I’ve sat with a distraught friend in ER, so wired she couldn’t lie still, and supported her to pace off the adrenaline around the room. Every time a staff member came in they made her lie back down where she shuddered and twitched and moaned. As soon as they left I told her or was fine to get up and pace again where she felt calmer. Eventually she naturally wore off the energy and was able to sleep.

So I let my legs jitter and hands shake and focused on the lecturer instead of the distressing PowerPoint and contemplated whether I would be better to leave class and try and get a lift home now or less distressed to just ride it out. Rose was on standby. I stuck it out and finished class and Rose collected me. A strange split state came over me. One moment I’m entirely settled, lucid, connected, grounded, except for the lingering sense of being out of sync. The next I’m scattered, full of awareness of things I know no one else is perceiving, flashes of images, feelings like a storm. They’re distinctly different. Over a few hours the scattered state diminishes but the settled state isn’t quiet normal either. I’m restless, energised although exhausted physically. There’s a curious desolate loneliness I’m learning to associate with psychosis, I feel distant from everyone and resentful of friends who haven’t reached out. And a detached amusement that feels dark and wild and slightly dangerous.

Rose is stellar. I’ve written before at more length how I approach psychosis and it works very well for me. The short version is: Eat, drink, sleep, rest, listen to your impulses/inner voice/intuition (but think it through before acting on it), and don’t panic. Pretty much the same applies to someone playing a support role. Holding the space, not panicking, remembering what works, and talking to me like I’m still Sarah are my key ones. She also tunes in and keeps an eye on me for new triggers – psychosis is weird in that stuff that normally doesn’t impact you can suddenly trigger it. I’ve spoken with people who have smoke alarms talk to them or all kinds of strange things. Sometimes trauma links can be figured out, sometimes there’s just the strange surrealism of dreams. I’m careful around anything with spiritual, religious, or paranormal content. Avoiding is perfectly fine at this stage. Buffy however is okay for me, which is how I’m spending today. ūüėČ

Rose and I actually had a really nice night together. I slept well with some phenergan. Today I’m exhausted and a little bored and over heated and taking it very easy. Rose is at work sending me possible baby names in her lunch break. It’s not exactly the most terrifying crisis ever. I’m eating icebocks to numb my throat and finishing the second season of Buffy. This is what it can look like, almost dull. Responsible. I’ve never lied or concealed my prodromal state. My people don’t terrorise me by taking away control. There’s trust and honesty, the kind that will make me a safe parent, the kind that make me a decent partner. We work together, and suddenly the bogeyman isn’t so horrifying after all. Such is life.

Psychosis & Secrets

I’m sitting on the pavement outside my car, waiting for the RAA to come and deal with the keys locked inside. I’ve just been to Sound Minds, our local South Australian Hearing Voices Group. I love getting along to this one.

We had a pretty full room. At one stage someone was chatting away and one of the members got the giggles. Everyone was trying to listen and keep a straight face. One by one more and more of us succumbed until we had to stop the conversation to laugh. A good belly laugh, about nothing at all. These beautiful people ground me.

I told them my good news, that my GP is on board with my unconventional approach to psychosis. A couple of us chatted about how destructive the idea of schizophrenia can be, life long illness, life long medications, being forced to confront your new reality in the interests of ‘having insight’, employers unwilling to take a risk on you, friends scared of you, family confused by you. I talked about how shame and secrecy can feed psychosis because people let them run unchecked, and try to maintain their usual activity level instead of resting, driving themselves deeper and deeper into it. How destructive the idea of a life long disability with no upsides is! How secrecy can often be woven into the fabric of psychosis, preventing the possibility of sharing the details and getting helpful reality checks. People are driven to this when saying ‘I think I might be hallucinating’ or ‘I’m feeling a bit paranoid’ would scare away friends or see them fired from jobs. One group member reminds me of the saying ‘You’re only as sick as your secrets’. Good point.

I’m not saying people who have to conceal mental illness, or those of us who prefer not to live our lives publicly on social media and blogs are sicker than the rest! I’m saying that cultural shame and fear trap people into keeping the kind of secrets that can make them very sick and very lonely.

My approach to first episode psychosis

After my first experience of psychosis, I did a lot of thinking and wondering about where it came from. I visited my psychologist and we talked about all these different ideas, and put together a strategy in the aftermath. We agreed that the idea in John Watkins book Unshrinking Psychosis¬†that there can be many different reasons for psychosis, including positive ones such as personality reorganisation, or a spiritual awakening, was a good foundation. We drew no conclusions about why I’d had the episode, and made no assumptions about what it meant. Going forwards we decided the best approach was

  • For me to work on accepting the idea that I am a person who sometimes experiences psychosis as quickly, gently, and positively as possible. It can be a huge shift in self-perception and identity, and if too large, or threatening to hope and self esteem, people stay mired in denial.
  • To reduce my fear of the experiences and anticipation of possible new experiences. To be careful not to develop frightening personal narratives about the experience, or of being sold into anyone else’s ideas.
  • To that end, to do my best to avoid mainstream mental health services.
  • To develop my social support to meet this new challenge. At that time, my networks are very supportive when I’m physically unwell, or struggling emotionally, but many of my friends have no experience of psychosis except for a lot of fear based cultural ideas about schizophrenia. People don’t know what to do or say or how to be helpful. I can work on this by using¬†times when I’m not psychotic to gently educate my networks about what it is and how it works.¬†To also connect with other peers who experience psychosis (through the Hearing Voices Network)
  • Welcome psychotic experiences into my life. To make room for the possibility that I will have more episodes, without being paranoid or fatalistic. So, make life, relationship, and career choices that will accommodate the occasional episode with a minimum of stress, and without having to be overly secretive or afraid of being outed.
  • Approach the psychosis from a place of gentle curiosity rather than fear.
  • Reduce shame, secrecy, and isolation. Stay connected to people. If I ever start to struggle with my reality testing, research suggests that close, trusted relationships with people who are not afraid of me or the psychosis will be the most helpful in supporting me to make sense of what is real and what is delusional.
  • Learn. And accept not knowing things. Tolerate ambiguity, uncertainty, complexity.
  • Grow. Use times that I’m not psychotic to explore ideas and needs that may underlie the psychosis, things that I’m drawn to or that feel significant during the episode. I may not be able to prevent another episode, but may instead be able to reduce how distressing the experience is for me. If I’m going fall into an inner world, maybe by taking good care of myself I can help the world to be one of dreams rather than nightmares.

I’ve since had a second episode and I’m working on making sense of that. But I’m still really happy with this approach. It makes a lot of sense to me, and it’s helped me navigate a second experience without shame or terror. It’s such a different way of looking at psychosis to that found in mainstream mental health services. I can’t help feeling deeply fortunate, and so sad and angry that my story and experience of psychosis is so unusual. I knew what was happening as soon as it started. I had experienced people to talk to about it who offered wisdom and support. No one panicked. No one made me feel I couldn’t handle what was going on, or that the safest approach would be to lock me up and tranquillise me. So, I didn’t have a load of shock, trauma, and fear to deal with on top of the psychosis. I was instead able to put together a plan with the support of people around me, which included options for outside support if managing at home became overwhelming. I don’t know what my future holds. Neither does anyone else. I’m free of dangerous, life limiting assumptions, free of a model of psychosis that speaks only of loss and limits, free of an enshrined cultural terror of madness. Don’t misunderstand me, this is not a polyanna, na√Įve approach, ‘mental illness’ of any kind can be terrifying and destructive. But as an approach, this has worked well for me. I hope it might be helpful for others too.

A second experience of Psychosis

Well, I’ve come through a second brush with psychosis surprisingly well. The process this time was very different to¬†my first episode. This time, I locked myself in my house alone, and made art. Dark art, yes, strange art, certainly. Intense art. I painted myself and took selfies on my phone. The results resonated with me. They’ve stayed, the way a cut on the wrist stays, so that the morning after the black night, you cannot simply walk away and pretend it didn’t happen.

As soon as we shut ourselves away and negotiated the freedom to create whatever art we wished (provided we didn’t publish anything online), the psychosis eased, and an intense state replaced it. The hallucinations, the fraying, the collapse of my sense of reality all lifted like so much smoke. I fell into darkness that did not hurt, like falling into a river in my soul. For a time I was free of everything that is used to define me, free of roles, relationships, expectations, free of need, or name. In this space, art was easy. No limitations blocked me. I could see through the things that stop me from creating. My hands were alive and my mind was burning clear. Art came as easily as speaking. I did not speak. I spoke in art, in paint, in my eyes in photos, my hands.

This time there was no terror, hiding from the sky in my bed for days. No fear of the dark. No nightmares. This time once the psychosis lifted it stayed away instead of drifting through my life gently for days or weeks.

I won’t pretend it isn’t crushing to have a second experience. There’s always that hope that the first will be the only one, and for many people that is true. Yet, I am also not giving up. Maybe this is now something I will have to manage regularly. Maybe I will have only two. No one can possibly know. I’m not panicking. I’m learning. I’m listening, unpicking the knotted threads. There’s a relationship here between art and madness that I don’t understand, nuances I can’t yet hear or speak. There’s also beauty, something that deeply moves me. This is not just loss, or brokenness, not just a mind overwhelmed by stress. Maybe there is danger here, and loss, and woundedness. Such is life. There’s also fierceness, joy, freedom. There in the shadow, I breathe the night. And then I let it go.

Dark bodypainting self portraits

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It’s been a rough few days. Yesterday, I barely spoke all day. I remember when I was living in a caravan park, this used to happen. Days in a row would go by in which I was silent, except for my journal, except for the weeping. There’s a relief in it, sometimes. I hide from the world, lock the doors, keep the curtains drawn. My paints sang to me and the day turned into a collage of sleeping, body painting, and photographing myself. When all else makes no sense, make art. I have my souvenirs from the underworld. Yes, it’s strange, but it’s cheaper than hospital. I’m still cleaning paint off the bathroom floor. It’s better than cleaning up blood. These are a small sample of the photos I took.

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So many questions. Why the psychosis? How is it linked to art? Why does creativity, not just any art, but the dark kind, help? How much of this do I need? Can I pre-empt the fraying? How do I fit this into my life plans – a job, sharing a house, becoming a mother, when it’s strange, anti-social, dark? I want to get my camera fixed, the good one, and buy a tripod. I’m supposed to be going back to college soon. I can’t fit it all in. My inks are singing to me. Is this how I heal? Ink not blood, and¬†Wrist poems, and¬†Making art. I don’t know. This is not about pain. There’s something else down the bottom of this well, this rabbit hole. Something I don’t understand. The voice of the night wind perhaps. Something – some one – needing a voice and a place at the table, even if the cup is chipped and the soup is watered down.¬†A sense of freedom from the world, a place where my identity is solely that of ‘artist’.

On thin ice

Yesterday was an okay kind of day, some good stuff, some difficult. I’m home now at the end of it and I’m fragile. I’ve been doing a lot of things lately that asked a lot of bravery of me and perhaps I’ve misjudged somewhere. My head is full of parts who are¬†screaming and I’m massively dissociative and in the early stages of a possible psychosis. I’m deliberately cultivating the dissociation in the hopes that will be protective against the psychosis. It’s a really weird feeling to go from being fine, to that sudden sense of being on very thin ice, where a wrong move will tumble me down a rabbit hole that’s cold, dark, lonely, and populated with nightmares.

I can feel my hands fraying into the night. There’s screaming under the water, and a shrill kind of silence that’s like pressure in my ears. And then, in the next moment, we switch, and there’s breath in my throat again and nothing seems more ridiculous than the suggestion that we’re in any kind of trouble. Breathing in and out and watching the night go from peaceful to terrifying. Not looking at the starless sky. I take three steps back inside my own skin. I pull the ash of the zombie years over my skin, use it to weigh me down so the wind cannot blow me away. I withdraw my consciousness from my hands. These are not my hands, not my fingers, these hives on my wrist are not mine. I am a candle deep¬†inside a lantern of skin.

No crying now, just the little eye roll of the unperturbed. Someone who has to stay up all night with a sick child or creature. Someone stolid, who settles in with a book and a cup of coco, who has brought a blanket to wrap in against the cold,¬†to do what must be done without trauma or exasperation. Tomorrow is another day, it’s another day.

Experiences of spiritual emptiness and hope

I caught up with my local Hearing Voices group in SA yesterday. It was so good to see everyone again. I love this group, they will always be close to my heart. One of the first places I felt at home and started to see another way of engaging my own pain and loss. One of my first experiences of community. I was so happy to be back, particularly as I’m not a co-facilitator anymore and can just be my own mad self. ūüôā

At one point, a member talked about experiences of spiritual emptiness. How I love this group, that these conversations happen. I constantly learn so much, feel so humbled. We talked about emptiness, shame, connection. I talked about my experiences coming home from the World Hearing Voices Congress and starting to struggle. At the congress I had the most amazing experience of connection with a whole room of like minded people. The first night alone in my flat was a transition. I’ve never been particularly good at object constancy. I can’t easily retain a sense of emotional connection to people when they’re not present. For the first 6 months of dating Rose, I would wake up every morning and go and find a photo of her to remember what she looked like, and to try and find that sense of connection to her inside me. I have issues with facial blindness, and often cannot picture the faces of my loved ones in my mind. I disconnect quickly. This can be really tough. I keep a lot of photos on my phone and around my unit to help me with this.

So, at the congress, all the connection, the hugs (we did a seriously AWESOME job of keeping out the parts who would get the most out of and be the least stressed by the congress! Very proud) the amazing conversations, they were all buoying me up. It felt like everyone I’d spoke with was a big red helium balloon, and I was holding the string. Feeling connected to them all, to a whole amazing community of people who treated me with care and respect, was half like flying. I was uplifted and full of hope. I felt like I could do almost anything.

Home alone in the night and the strings started to pull through my fingers. A profound sense of being empty and alone and very small in a very large, dark world crept over me. Hollow inside, doubts crept in, shame, every compliment in my memory twisted into a recrimination, every connection seemed imagined. I fell into the pit.

This time I took that image of the balloon strings slipping through my fingers and asked myself – what would help me hold onto the strings? I found that a question that resonated with me, there was a sense of fumbling in the dark towards answers. I took out my conference name tag and pinned it to my bookshelf where I could see it. I posted how I was feeling on this blog. I got up the next morning and watched Patch Adams over breakfast – marveling at the parallels, at the way so many of us are fighting the same fight, dreaming the same dreams. And how some of us simply cannot fit in, cannot help but be madmen. It’s not about what will work, or what’s practical, or even what will further our ideas best, it’s simply who we are.

I keep listening to small voices inside, keep looking for where my energy is. Keep trying to find ways to be more human, more honest, stronger in myself, more vulnerable in my interactions. I know that I cycle, it’s the nature of the carousel of parts. But I also know that strength deep in the system, that experiences of meaning, connection, community, and hope are deep and profound foundations even for the most wounded and disillusioned of us.

Being counter to mainstream culture can be hard. All of us need ways to keep our dreams alive, to maintain a connection to the things that are meaningful to us. I hope you are able to find ways to grasp the slipping strings in your own life, ways to tolerate the nights that are empty and find your way back to hope again.

A quote from Patch himself (not the movie):

you don’t kill yourself, stupid; you make revolution.

Vive la revolution!

I’ve always been a creative person… Lady Gaga

Irregardless of your musical tastes, I find this inspiring. She’s not the first artist of whom I’ve thought – if they had turned up in the mental health system at 16, we would have lost them. They found art instead, where it’s okay to be mad! It’s not just okay – it’s perfectly acceptable to not only suffer from madness, but also to use it to every advantage you possibly can. These are the stories I think of as a peer worker when I feel that the script I’ve been given is “Don’t be afraid, reach out for help, get a diagnosis, learn about your condition, you can recover” – and what I actually want to say is “RUN. Never walk into a room you are not sure you’ll be able to walk out of. Learn, but do it secretly, in libraries, online. Don’t let anyone tell you what’s wrong with you, and don’t let anyone save you. Find your tribe.”

recovery network: Toronto

Lady Gaga talking on The Graham Norton Show about how she harnesses her voices to inspire her creativity…

lady gaga

Short Clip [45sec]

Full episode [37min]

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Where does my psychosis come from?

7 weeks ago I had my first adult experience of psychosis. I was extremely fortunate in that I knew what was going on, and was able to find enough strategies to manage it that it passed comparatively quickly. For the next several weeks I felt very vulnerable, on the edge of that place. I felt dissociated, and mildly paranoid. I had a strong feeling of being watched at all times, or of having someone behind me. At times it was stronger than that, the sense that I was standing on the lip of a hole in the fabric of the world. I was looking at reality, but just behind me was a tear into the void, dark and cold and terrifyingly inhabited. I could feel a cold wind on my shoulders.

I was still in a highly sensitive place, where certain things would speak to me in a way I wouldn’t usually experience. At a party a few nights later, a song comes on that has a guttural male voice singing and it’s like that moment in films where the background suddenly seems to zoom into the foreground without displacing it. The sound of the deep voice is reverberating in my body and making my hair stand on end. I go outside where I can’t hear it well. My hair settles back against my skin.

For the first few days I stay in the light, keep all the houselights on all day and night, and do not leave the house after dark. I do not drive, I do not work, I’m just patient. I test how things are developing gently, try turning out a light and wait to see if the hallucinations return. I find that I exist in a twilight state for a few weeks were the dark is mostly empty, but sometimes starting to fill with hallucinations. Being driven home by Rose, I’m watching the sky curiously as night falls, relieved when it’s empty, cautious when things move within it.

A few nights after the episode I’m lying in bed, talking on the phone, and the conversation is becoming increasingly stressful as Rose and I don’t see eye to eye or understand each other. I feel a sense of a charge rising in my body. It reaches mass and my sense of self suddenly dissolves, like a drop of oil onto a vast surface of water. I have no sense of my body, of gravity, of weight. I have no sense of being the right way up or even what way that is. I feel vastly infinite and utterly tiny at the same time. There is a consciousness at the center of a galaxy of stars like dust. I am falling in every direction at the same time. I close my eyes, knowing that I am still only a woman, still lying in bed, speaking on the phone, having an argument with my love. We keep talking. We find a place of connection and common ground. I feel myself come back together, like big bang in reverse, silent and without violence, all the stars gather back into my skin.

Gradually it eases, this sense of being suddenly skinless, on the edge of this world and another one.¬†I’m so fortunate. How many people even know what psychosis is when they have their first experience of it? More than that – know what might help, know that it’s temporary, know that I can survive it? I re read a book I own called Unshrinking Psychosis by John Watkins. I recommend it for anyone seeking to better understand psychosis. Two ideas stand out to me – that there is method and meaning even in madness, and that not all psychosis is a breakdown. Some is a messy restructuring of the mind, a transformative process. Not breakdown but breakthrough. Not indicative of problems or stress or failure, but of growth, process, recovery. This resonates with me.

I also reached out to a mentor who has also experienced psychosis and we went out for coffee. The chance to talk with someone else who has been there – and come through it, sans lifelong complications, diagnosis, medications, and stigma, is such a relief. I ask one question in particular – “I felt so lonely in that experience, was it like that for you?” They tell me – “Lonely is not a strong enough word for the feeling of profound aloneness and alienation.” Yes. That’s how it was for me. They remind me – crisis is nothing more than the interruption of a pattern. For good or for bad.

There are things I understand better now. I understand the tremendous distress of people who’s sense of reality has collapsed when we try to tell them the things they perceive are not real in an attempt to comfort them. This is not reassuring. We are trapped between our psychotic perceptions (which may be terrifying, or not) and an awareness that we are going mad, which is absolutely terrifying. Knowing that the experiences are not real does not stop them happening to us. It’s like being trapped in a nightmare from which you cannot wake. Knowing it is not real does not stop the fear or the horror, in fact the sense of disconnection from everyone else, from the ‘waking world’, to push the metaphor, is terrifying. And we don’t know if we will wake up. So we cannot come to harm physically unless we act upon the psychosis – when the terror was so intense that my skin was literally rippling across my body, the effort it took to stay still and not run – blind with terror, through any obstacle and into any terrain, took everything I had. Even if ‘it’s not real’ means I can’t come to direct physical harm, I can certainly suffer psychological trauma. ‘It’s not real’ reminds me of the dissociative process of a child being sexually abused – not physically harmed, but violated and traumatised, who thinks to themselves ‘If I pretend this isn’t happening it cannot hurt me’. We know that’s not the case, that these experiences impact and change us even if we deny them. The experience of psychosis impacts, changes, and even traumatises us, even if ‘it’s not real’, because experiences that invoke terror, horror, helplessness, and isolation always have the potential to be deeply traumatising. The emphasis on it’s not real, don’t acknowledge it, the focus on getting over it and back to life, sealing off the experience as quickly and completely as possible seems like a highly dissociative process to me.

And there lies a dichotomy in my experience. It was not real, and yet it was real to me. More than that, it had a sense of profound significance and meaning that I am still gently examining. There was a sense for me of the indelibly familiar about an experience that was at the same time, utterly alien and new. Talking with my support people I drew upon many seemingly disconnected threads of my life that all had some link to this experience. I remembered my vivid imagination as a child where I could perceive things that other people did not – particularly at night. Foxes that ran up and down our hallway, soft footfalls on carpet and the brush of coarse fur against my legs, but not the musk of the real animal. The shadows that congregated in our lounge room every night, tall as adults, having meetings, talking among themselves in a murmur of voices that was the soundtrack to all my childhood nights. If disturbed, they would rush as one furious mass to wreak some unnamed horrifying punishment on any child out of bed. Some nights having crept out for a drink of milk I would be trapped in the triangle of light that spilled from the open fridge, waiting for dawn to come so the shadows (which could not move into the light) would go dormant. (waiting for the dawn to come – so many sleepless nights where only dawn soothes me to rest even now) My wild imagination made me stand out as a child, but not so much that I would have received any kind of psychotic diagnosis. I was different but not that different. I wonder sometimes if all children are naturally psychotic – and yet aware of the divide between the real and ‘not real’ that they perceive: imaginary friends, ‘pet tigers’, games. Somehow we lose this with age.

Another link; making connections with younger parts in my system (I have DID) has been a frightening and fascinating process. It has been hard for those of us who are older to permit our inner kids to have time out in our body. For some of us, it’s painful to be misunderstood as being childish. For others, it’s frightening how vulnerable inner children can be, and how lonely it can be to be a child in an adult body. A few months ago a very young part came out to play with a my little pony toy. They ‘flew’ the toy around the room. We were co-conscious for the play. What was absolutely startling was the physical response in our body. It reacted as if¬†we were flying. Muscles tensed and relaxed, electric sensations feathered across skin, with the highs and lows of the flight the stomach flipped like we were in a car going fast into dips and rises on a road. When the adults switched back out, they were blown away to have this glimpse of a child’s world again. Children, or least, my inner children, have an intense empathic bond with toys that allows them to experience what the toy does. It’s outside of anything I have felt as an adult. No wonder children can play for so many hours. No wonder I struggled to not lose this ability myself as a child, playing games with younger and younger children as my peers lost interest in imaginative play.

A few months ago I was playing a game with friends that relies on imagination. Called Beyond¬†Balderdash, you have to quickly invent plausible definitions of words and other cues. I find these quite challenging, not least because being a creative person, I’m expected to be very good at games like this and the pressure interferes with my thinking. For the first couple of questions I wrestled with my brain, trying to come up with original ideas and mostly drawing a blank. The struggle was fruitless, like trying to use a hammer to thread a needle. Then I felt a shift inside me, something wrestling with me and wanting me to get out of the way. I relaxed and let the process unfold. I stopped shaking my brain in frustration, trying to squeeze a creative answer out of it. Suddenly ideas came out of nowhere, easy as reading off notes someone else was handing to me. There was no struggle. My imagination just spoke. I thrashed everyone else at the game, and went to bed that night feeling thoughtful and a bit confused. It almost felt like cheating, the way Eleanor Longden describes her voices giving her the answers to an exam and wondering if that was cheating.

In my arts practice I’ve also been experimenting with something curious. When I’m doing something like painting, for me it’s a very intellectual process of calling to mind the shapes and colours I want to create and then doing my best to get my hand to make them. I’ve noticed at times that while doing this, I can ‘see’ an image on the canvas (or paper, or skin) that I’m painting on. It’s not really there and I know that, but I can still see a faint ghost image of what I’m trying to create. And it’s often different from what was in my head – maybe only in a small way, such as the placement of an eye, but it is different. So sometimes I ignore what I was trying to paint and I paint the image I see instead. Again, it feels oddly like cheating. The strange thing is, it’s surprisingly effortless, and it almost always looks better than what I had been going to do.

I think about sculpturers describing their process as being seeing what is in the stone and setting it free, rather than turning the stone into something. Rather than a quaint turn of phrase, this concept now startles me.

Nightmares that have been so deep, involving, and horrifying that my sleep became a place where I was helpless and tortured. And yet, a sense that in them in something powerful and important that I would be at great loss without. Memories of being so afraid of the dark as a child and young person that there was a sense of being on the edge of running, and that if I ever allowed fear to overwhelm me and started to run there would be no stopping and no safety ever again. An incident as a young person where I briefly hallucinated a nightmare figure when trying to confront my fear of the dark and had a panic attack. The experience of sensory dissociation and trauma so profound that I craved touch to ground me back into my body and sense of self. My desperation to experience psychosis as a highly traumatised young person who could not escape the daily pain of things like chronic bullying and alienation at school. And yet, curiously, I failed, and at the time, reality remained immutable.

Separate and yet connected experiences. Many of them, like threads all leading to a complex tapestry I now seek to understand.

I understand now the rage I felt in some people¬†at the last Hearing Voices conference I attended. At the time I recoiled from it, wanting to walk a gentler path of diplomacy and peacemaking. But, sitting in my bedroom wracked with terror, on the edge of needing crisis support and knowing how profoundly traumatic that ‘support’ would likely be, I felt the terror and fury of someone marked for abuse and helpless to prevent it. The sense of safety of being at the edge of conversations about appropriate supports and responses to psychosis was stripped away. I was no longer a ‘voice of reason’ on the sidelines. I was now naked and vulnerable and under the microscope. The knowledge that simply being honest about my experiences could see my most basic rights taken away from me in the name of protecting me, could see me drugged and locked away, trapped and confined, subjected to solitary confinement, forced into therapy with people who use entirely different frameworks from me, horrified me. The instinct for self preservation said – silence. Secrecy. Be small, quiet, hidden, and run a long way away from the places where people like you are kept under guard, sedated, tied to the bed, given intense directives and advice by every nurse, doctor, and shrink, most of which is contradictory. So instead, I blogged.

I should be able to call a place like ACIS¬†and tell them about my drug allergies and DID and trauma history and explain that I need a quiet place to rest for a few days and just enough sedatives to help me sleep without sending me into liver failure. The liklihood is that I would be abused and ignored as a faker, or committed, dosed on meds I cannot tolerate, and then find myself trapped in hospital in a spiral of drug induced psychosis¬†and forced ‘treatment’. A system that is both over and under responsive to crisis, that has ‘entry and exit’ problems – it’s hard to get into the system and get help, and also hard to get out again. There’s rage in me that this is the ‘help’ available to me – high risk, and likely as traumatic as it is helpful. What I need is¬†Soteria, a place of safety and respect, where people who are neither afraid of me or my experiences hold my hand while I rest, find my feet again, make sense of things, return to my life.

There’s not just chaos and loss here. Psychosis has been like being tipped up into my own subconscious, filled with wonder and stuffed with nightmares that breed in the dark. I refuse to live in fear of my own mind. There’s powerful things here, about life and love and art. If the alternative is the loss of those things, is the ‘flatland’ of a life that does not move me, of art that is forever the imposition of my will upon things around me, instead of a conversation with my own shadow, then I’ll risk a little madness.

When I was a child, my Mother believed fantasy and imagination were powerful and important. Creativity is essential to life. One of her friends believed they were dangerous. Her children were not permitted to watch the films we watched, or to read the books we read. Their play was shaped in ways mine was not. I wondered, after this experience, if they were right. Has being exposed to fantasy made me more vulnerable to losing my grasp on reality? Or has it left me better equipped to navigate my own inner world?

In the hearing voices group I’m involved in here in SA we often talk about our inner reality. Instead of conversations about reality and delusions, we talk about the shared reality and the inner reality. What I experience in psychosis isn’t real. But it is real. It is my reality, drawn from my mind and my life. Full of the promise of connection and art and a deeply felt life, as well as nightmares and terror. Of embracing child parts and making sense of trauma and facing my demons.

I’m back on my feet at the moment. The dark is empty, I can walk through life without music or images speaking into my heart and calling up a flood. I’m scared, and angry, and aware of a new gap between me and people who don’t experience this, and another reason I am vulnerable to stigma and ignorance. I’m also thankful, thoughtful, listening to the world with one ear cocked towards that void. I will go where my heart wills and seek the deep truths of the soul. Fray into stars and become a person again.

Poem by Jenny

Come share with us
You’ll be safe
Pull up a chair
And claim your space

Part of a poem composed in Sound Minds yesterday, SA Hearing Voices group, by peer worker Jenny Benham.

I was very involved in supporting this group for a couple of years, but last year I found myself in a place where too many projects were taking off and needing a lot of time and attention, and I had to make hard calls about what to take a step back from. This one became one of those I stepped away from because there were other awesome facilitators involved to support it, whereas projects like the DI Inc would die if I let them drop. I’ve also had to make difficult decisions to limit the amount of volunteer work I do each¬†week and put some deliberate thought into supporting myself and my family, and unfortunately my¬†hearing voices work was never and is unlikely to ever become¬†paying work.¬†Nonetheless, I love this group and will always have a place in my heart for it. I didn’t start off being a facilitator at Sound Minds, I initially turned up as a lonely, angry person struggling with homelessness, caring, and a life in crisis. Sound Minds became the turning point for me.

Later, I spent a lot of time looking at what worked about the group, and why it worked, to use the underlying principles of respect, safety, acceptance, and recovery in building other groups like Bridges and Blue Skies.

So, it was great to go back and connect again. Jenny and I are both going to the International Hearing Voices Congress in Melbourne next month. We had a great chat about what’s going on in that world lately, and I shared my excitement about the resources Rachel Waddingham¬†has been creating and sharing online in the Intervoice Facebook group. See some of them here. Rachel and I were talking online and I was lamenting how difficult I’d found it to create resources like that here, with no funding, lots of bureaucracy, and little support. She was suggesting brilliant ideas like utilizing our vast networks of people to share flyers instead of relying on services taking us seriously and doing it for us. It was an inspiring conversation. I regret that I’ve had to let work in this area drop, regret that I couldn’t do more. And I’m frustrated that those being paid to represent us are often far less passionate and enthused than we are. Perhaps if I can keep the DI running we can nest some resources under that organisation? I don’t know, I can only do so much. It will be so good to go to the conference and hang out with a likeminded group of passionate advocates, working without money or resources or recognition but with a painful awareness of need is a tough place to be in. It’s good to be part of a wider community.

Countering DID myths – we’re not all the same!

In my recent post Common DID myths, I spieled a stack of common misperceptions I’ve encountered that bug me as a person with DID. It got a lot of interest from people, with the odd misunderstanding or uncertainty about what I DO think about DID. To go through each point alone would be a huge post, but I can counter a bunch of them in easy to handle groups.

If you’re new to the topic of dissociative identity disorder, there’s a great, easy to read introduction here, or a shorter¬†brochure version designed to be an easy place to start when educating other people – you can tailor it to your own experience by sharing the ways it does and doesn’t fit for you. I wrote these a few ago, back when I was starting out on my journey of being a peer worker coming out about having DID myself. Since then, I’ve learned a lot and my perspectives have changed in some ways. These days I’m far more interested in talking about multiplicity (an experience) than DID (a mental illness)… rather the way that that organisations like Intervoice talk about hearing voices instead of schizophrenia. Why? Because it takes the conversation away from the medical model. It moves us away from needing experts to tell us what is going on with ourselves. (not that collaboration with other people isn’t very helpful!)¬†It moves us back into being the expert in our own lives, where our own opinions, experiences, and ideas matter. It stops pathologising all these experiences – did you know that a lot of people hear voices that are not distressing, cause them no harm, and that they have no other symptoms of schizophrenia?

Plenty of people with multiplicity have been diagnosed with DID or DDnos (which is the grab-basket diagnosis for people with major dissociation things going on who don’t quite fit into the diagnostic category of DID) and that’s great, and I work a lot in the mental health system where DID is what we talk about. But for me, it’s important to separate experience from diagnosis, and to remember that not everyone with that experience fits or identifies with the diagnosis! Read more about my thoughts on the relationship between multiplicity and the diagnosis of DID on Introducing DID Brochure and unplanned rant!

One the biggest issues with misunderstandings around multiplicity, as a lot of people pointed out, is the absolutes! Everyone with DID does this, or needs this, or feels this way, or recovers like this… So the first thing I do believe is this:

People with DID are not all the same

There are many spectrums within DID that vary widely from person to person, and also within the same person at different times. Some common ones I’ve come across are:

  • Degree of amnesia – some people have no idea what has happened when another part is out. Some people are aware of things while they are happening, or get updated after they have happened. This can be different at different times – I have a lot more amnesia when I’m stressed. It can also be different for different parts, some may always be aware, some may always be amnesiac within the same system. For more information¬†see what is co-consciousness.
  • Obviousness of switching¬†‚Äď for some people it is obvious when they switch, for others it is so subtle that only someone who knew them very well might be able to tell. My switching would be obvious if I allowed it to be a lot of the time, but years of keeping it hidden mean most people do not pick it. Some people are more sensitive to subtle switching than others.
  • Number of parts¬†‚Äď this can range from just two, to hundreds or more.
  • Nature of switching¬†‚Äď some multiples switch all through the day, others only very occasionally, and some people never switch, but they talk to their parts and hear them in their mind, or see them as people outside of themselves.
  • Degree of internal control over¬†switching¬†‚Äď some multiples can chose which part is out, others have no control over this. Sometimes some parts have more control than others, or can set up triggers to deliberately switch – eg. I will wear certain clothes and bring certain foods and smells with me to make sure my researcher stays present during exams.
  • Degree of fluidity¬†‚Äď some multiples have very¬†fixed systems with, say, 5 members who have been there for years and have not changed at all in age, self identity, or roles during that time. Others are more fluid, they are difficult to learn about as they are constantly changing with new parts forming and old ones going away. Neither of these is necessarily better than the other – fluidity can be chaotic, but rigidity can prevent growth.
  • Other diagnoses¬†‚Äď people with DID may have other physical or mental illnesses which will change how they experience life.
  • Degree of¬†impairment¬†‚Äď some people with DID are extremely unwell and struggle to function, perhaps spending a lot of time as inpatients, while others live and work unnoticed in the community, perhaps with no one around them aware of their condition.
  • Degree of separateness between parts – some people’s parts are closer to each other in the sharing of psychological space, they can do things like share tasks in the body (one running the mouth and eyes while another chops food for dinner), merge and blend skills, feel each other’s emotions – eg. a content adult is enjoying their evening, until they start to be disturbed by a growing feeling of anxiety that seems alien to their own mood – because an inner child is distressed by the movie and their feelings are blending across, or influence each other mentally such as giving or taking away words in their mind, showing images to each other, and so on. Other people have parts who are completely separate and share no common psychological space or resources. Both within the same system is possible too.
  • Polyfragmentation¬†‚Äď some people with DID have mini systems within their system, or have parts who have themselves split to form parts of their own.
  • Degree of diversity within the system¬†– systems can form with parts who are extremely similar in personality and nature, or extraordinarily different. One system may have 5 parts all called Geoffrey, all somewhat shy, introverted guys who hold different memories and range in age between¬†35 and 50. Another system may have highly diverse parts who identify at different places across a spectrum of gender, sexual orientation, age, ethnicity, species (some people have parts who identify as being animals, spirits, fae etc), and so on.

DID is about identity ‚Äď it is therefore extremely individual in the way it presents and is experienced!

This is contrary to all the myths based on absolute assertions, such as

  • People with DID can‚Äôt work.
  • Everyone with DID has an inner self helper, an inner protector, an inner wounded child (and so on).
  • People with DID are manipulative.
  • People with DID can never control their switching.

These myths are often perpetuated by people who have had some kind of contact with the multiple community, rather than the set I come across when speaking to people who have never heard of DID. Humans do seem generally to be wired towards absolutes, and you’ll find myths based on absolutes abound in most areas of human endeavour. All lesbians are vegetarians, all¬†Indians like cricket, all domestic cats hate water. They are true some of the time, or even lots of the time, but they do not capture everyone’s experiences.

What particularly frustrates me is that so many of these myths are embedded in our resources. Throughout many of the books about DID, and the frameworks about working with DID given to us by the ‘experts’ are absolutes. These people should know better. I‚Äôm sick to the teeth of reading books that tell me things like¬†all people with DID have an inner self helper¬†(a very useful type of part who knows a lot about everyone in the system). What they actually mean is¬†all people with DID I’ve worked with have an inner self helper¬†or, if I‚Äôm being particularly cynical;¬†having absolutes makes me less anxious about working with people so I strongly encourage all my clients to present their DID to me in a way I‚Äôm comfortable with. That is harsh – as people we are often unaware that our absolutes don’t include someone until that someone tells us. The problem is that when a whole stack of people agree on an absolute like this, it creates a culture where people who don’t fit are not invited to share their experience. If that culture becomes rigid and deeply embedded, then people who don’t fit will be ignored and excluded even when they do.

I get angry about this because I work with too many people who are stressed and scared that they don’t seem to be fitting the frameworks they’re reading about or that their therapist is working from. Frameworks are really valuable!! They give us direction when we feel lost and hope when we feel overwhelmed. But I believe that¬†holding any framework too tightly, or trying to force a framework into a situation or onto a person when it isn’t fitting and when it’s creating instead of alleviating stress is wrong and harmful! Some people don’t get stressed, they just exit the supports. They maintain their own sense of identity and truth, alienated from the community and unable to access the services if they ever do struggle. This is not a good thing.

Lastly, I think some of these myths about absolutes are basically Black-swan fallacies. “Every swan I’ve ever seen is white; therefore; there are no black swans”. I read a lot of these in the literature. All DID¬†is caused by trauma. All DID is formed before the age of¬†(pick one) 10, 8, 7, 5, 4, 2. All people with DID need extensive therapy. People with DID¬†never spontaneously integrate. These are based on the experts not having witnessed anything else¬†– but that does not mean that anything else isn’t possible. In fact, considering that you are not permitted to self identify as having DID (because that is self diagnosis and therefore lacks validity, a claim I’d be more comfortable with if I believed any form of diagnosis had much in the way of validity), then research is never going to include people who haven’t had contact with the mental health system, so there is actually no way to hear about things like people living with DID who don’t use therapy. In some cases, the limited way the diagnosis of DID has been constructed contributes to these fallacies – for example there’s a case study in Trauma and Recovery by Judith Herman (Chapter 4,¬†The Syndrome of Chronic Trauma)¬†about a woman who was a political prisoner, who describes a degree of internal splitting as an adult – “My second name is Rose, and I’ve always hated the name. Sometimes I was Rose speaking to Elaine, and sometimes I was Elaine speaking to Rose. I felt that the Elaine part of me was the stronger part, while Rose was the person I despised. She was the weak one… Elaine could handle it.” I’m not saying Elaine developed DID, but this experience of parts, some degree of multiplicity, gets excluded from conversations about DID, and I think we need these.

These types¬†fallacies are being exposed in the field of psychosis as space has been made for more people to join the conversation. So much of what¬†we think we know about hearing voices is based upon the experiences of people within our mental health systems. Many people who hear positive, helpful voices or¬†only briefly hear voices do not tell anyone. Why? Because of absolutes such as ‘everyone who hears voices is mentally ill’. They’re not invited to the party. If they do turn up, they’re offered a label, a diagnosis, a straightjacket, and all their thoughts and ideas from here on out are delusional, unless they agree with their treating doctor, in which case they’re insightful. Through the work of mental health activists – both of the peer and expert kind, new parties have been created where people get invited to share and amazing things are being learned – like LOTS of people hear voices, many voices are not distressing, some voices only become distressing when people are counselled not to listen to them, and that different people find different approaches best.

If we keep talking about DID and multiplicity using absolutes we are excluding so much of the diverse experience and wisdom of our own members. There¬†IS common ground – people with DID have parts –¬†and generalisations can be useful: people with DID often get frustrated about having to explain¬†our condition to everyone, people with DID feel scared and¬†isolated when¬†we don’t know anyone else with DID, people with DID want to be believed and accepted. I believe that people with DID are a highly diverse community, with many different experiences, ideas, understandings, and ways to live life most fully.

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

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! ūüôā

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

Speaking at the World Hearing Voices Congress in 2013

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

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

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

Poem – Delicately balanced

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

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

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

Other days I wake

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

See more like this:

Psychosis

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

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

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

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

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

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

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

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

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

Follow up – Where does my psychosis come from?

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. ūüôā

Bio

I‚Äôm a poet, writer, and artist living with ‚Äėmultiple personalities‚Äô. I‚Äôm 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 ‚Äėmental illness‚Äô. I‚Äôm 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 ‚Äėmental illness‚Äô 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 ‚Äď Life as a Tribe

I will share my experience of living with voices who are parts ‚Äď 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 ‚Äúa grand adventure of self discovery‚ÄĚ. I‚Äôll 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‚Äôll 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 ‚Äėout‚Äô, 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.¬†