Mental Health

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

Walking lightly

/ Sarah K Reece / 5 Comments

Rose and went to a follow up appointment at the local hospital today. The second opinion was sadly the same as the first, the odds are very against the survival of our bub. They were very nice. They’re taking over our care early, so they’re now the ones to call with questions or fears. We can turn up anytime if there’s bleeding or cramping. (must turn up, in fact, as I’d need an injection to prevent my body creating antibodies against the bub) They will do another scan in 10 days time, if we haven’t miscarried by then, and compare growth rate and so on to see if there might be some cause for more optimism. In the meantime we just wait.

It’s a hard place to be, we’re full of hope and despair in equal measure. We’re talking things very gently. Today I felt like company and Rose felt like bunking down at home, so she did just that, and I went out to Port Noarlunga with my sister and a friend. I had a raspberry sorbet and we went snorkelling along the reef. It was such a beautiful day, so bright and clear, the sky so blue. The water was full of fish and we saw a few crabs and starfish too. We’ve had dinner with family and we’re now watching Harry Potter.

It’s like the movement of a tide. Some hours are full of big emotions, others are the simple joy or needs of the moment. I feel a lot older and wiser about dealing with the movement of such string feelings. Less ashamed and bewildered, trying to control what I can’t. Better at rolling with the tides. It’s funny, on the way home today I thought about sharing on here what I’d done and I knew it would meet with the approval of those who would have advised me to not concentrate on the fear about our baby, just enjoy myself. That’s really not what I was doing today. I’ve had a lovely day after the sadness of the hospital this morning, but that’s not because I chose to think positive or decided how I would feel. If I had needed to curl into a dark place and paint myself with ink, or make dark art, or park my car somewhere solitary and scream, I would have done those things. I’m likely to do them sometime over the next few weeks.

It’s not about what anyone else would do or thinks I should do. It’s not about what a social worker might think of as the appropriate ways to handle this. It’s not about obedience or conformity or trying to make myself feel or not feel anything. It’s about listening to myself, unhooking from shame and loneliness and the other painful ideas that inevitably come with strong feelings and tough situations. I share them, counter them, unhook from them.

People are not rational in the face of pain. It’s normal. I find moments of shame when I’m feeling good. I find vague hazy fears that people like Terry Pratchett have died because we’re trying to bring a new life into the world. And when I can take these some place safe and unhook from them without shame, I’m just left with the feelings and needs of the moment, and I’m free to meet them. Company, solitude, distraction, expression, research, comfort, whatever. Whatever the feelings or needs are, it’s okay. I can navigate them, explore them, find a place for them. Rose can too. It’s okay when they’re not the same. It’s okay when they shift every 20 minutes. It’s okay if they’re different to how other people have felt or think they might feel in this situation.

It is what it is. Today our little one tasted the salty sea warmed by the sun. With what time we have, we’ll live. Fully, deeply, honestly, passionately. We’ll hurt and we’ll hope.

Trauma is not everything

/ Sarah K Reece / 9 Comments

Bear with me, all those of you who are still fighting like crazy to have trauma recognised as important, relevant, meaningful to people’s experiences and struggles. I know that for you the idea that trauma can be overstated or misapplied may seem ridiculous because in so many areas it’s still fundamentally so ignored! But the fields are not flat – in some areas trauma is the focus in a huge way, and sometimes this is unbalanced and makes life harder for people.

I was discussing this issue once with a sexual therapist who was being driven to distraction by the assumption that trauma underlies all challenges people have. People were being presumed to have been sexually abused merely on the basis of having some issue they would like to seek support from a professional like her. The gender and sexuality diverse community has laboured under this myth for many years! I still hear from friends that some doctors and psychiatrists believe that being queer in any way is a sign of sexual abuse in childhood, or means they have unresolved issues with a parent. (Who the hell doesn’t have an unresolved issue of some kind with a parent??)

Trauma being a central focus can also cause problems because of people’s natural desire to arrange things in some kind of order. People often create a hierarchy to trauma experiences and feel humiliated and mystified when their trauma history isn’t ‘bad enough’ to justify their current struggles. Context – so dull and yet so key to the story of post trauma stress – is so often forgotten. Friends, connections, and meaning play such a huge role in our response to trauma. It’s not all what happened to you, it’s also how people treated you afterwards. Some of the most undramatic stories in our lives, loneliness and loss, leave the deepest wounds. Resources that focus on trauma either exclude those needing the same support but due to anxiety or other kinds of distress, or they broaden the definition to the point where all people are traumatised and the answer to every question and result of every equation is trauma.

It’s easy to look at a misfit like me and see trauma, and trauma is a big part of my story! But it is not the only part. I was a creative oddball long before school bullies and self harm. Claiming and understanding my trauma history and how it has shaped me has been essential to understanding myself, but I also find that at times I have to reclaim myself from the overwhelming trauma narratives. My life includes these things but does not revolve around them. I am more than what has happened to me. I am more than a sad story of harm or a triumphant story of recovery. I am also a life, a human life, with all the sorrow and pain, and the confusion, and the sublime. My story is not more or less meaningful, my pain not more or less real, my joy nor more or less extraordinary. I am human, and trauma narratives can take that away from me and put me in some other box of people who are different, lesser, or special. I am not other. I am human.

I remember going to Melbourne to see the Tim Burton exhibition and reading about his childhood and early life as an artist, expecting to see a trauma story given his proclivity for the gothic misfit. There wasn’t one. He was a creative oddball who didn’t fit well – his portrayal of the blandness of suburban life are now legendary! (think Edward Scissorhands for example) Trauma is part of the story of many artists lives, but for many it’s not, and we misunderstand something about the nature of creativity and restlessness when we forget this. When we don’t recall that many artists don’t ‘fit’ at first, we turn that ‘not fitting feeling’ into something about trauma. Being an outsider is always a strange, challenging, and blessed experience whether you’re super smart, disabled, or vaguely mad. Trauma may be a result if you’re isolated or bullied, but it’s not always a cause. 

I find myself wanting to talk about how harm can happen when all our dominant narratives become about trauma. When friends struggle through extremely poorly delivered child abuse awareness training where they are told definitively that people who are sexually abused as children are damaged for the rest of their lives and never recover normal relationships or sexual intimacy, I’m so angry. And when those friends try to speak up and say – hey, that was me, and yes, it’s the most horrible thing – but don’t write off our lives! We DO have lives! And are instead told their personal experience is clouding their judgement so they are failing to appreciate the catastrophic impact, I think something is wrong.

I’ve read ‘trauma informed care’ documents that make victims of trauma sound like helpless children, or that insist that healing only happens in therapy and close connections to a traumatised person should never be attempted by someone not ‘suitably trained’. You can almost hear the void around the hurting person as everyone steps back and waits for an expert to come along. In other contexts, we call this ‘the bystander effect’. It’s not a good thing. Friendships and relationships have a language of their own that should be respected! Communities have been finding ways through trauma – well and badly, for thousands of years before we invented therapy. Therapy is one of many tools, and it does not ever replace community and a sense of belonging. (many trauma therapists know this, of course!)

I’ve sat in talks about multiplicity that were so concerned to let us know we may be triggered, we were welcome to leave partway, caring staff were on hand if we needed to talk to someone etc etc that I seriously wondered if they’d considered that I manage pap smears, nightmares, losing people I care about to death and suicide – on top of the various traumas in my more distant past. The focus on my vulnerability left me extremely angry and unseen –  my strength, my coping, my competency were all invisible in a space that marked me as a trauma survivor and permitted me to leave the room where the important educated people were discussing the difficult topics of the life and recovery of people like me.

There’s a fantastic looking conference happening later this year I would love to attend and speak at. It’s being held by the International Society for the Study of Trauma and Dissociation. Unfortunately it’s happening the month after I’m due to deliver our baby, so I’m not going to put an abstract in. But reading the front page of info really made me want to, because its called Broken Structures, Broken Selves, and describes “The very structures given the responsibility to protect these children, broke down their basic trust in the world, and therefore their very essence – Self – so necessary for their future development.” And I so want to go there and talk about the harm we do when we constantly refer to people as broken! The number of times terms like fractured, broken, fragmented, and developmental failure turn up in books and articles about multiplicity is absurd. People are harmed when we constantly describe them this way! People are harmed when there is no concept of healthy multiplicity, non-trauma-origin multiplicity, or healthy dissociation. I KNOW there is a profound need for awareness and sensitivity to the impact of trauma, to normalise and support people especially when their only other framework is “I’m crazy!” People are harmed by trauma, yes! But when inbuilt defense mechanisms like dissociation act exactly as they are supposed to, I would argue they are a very long way from broken. It is those who harm people who are broken. That is the inhuman behaviour.

I can’t go along this time and say any of that, I’m hoping that someone will anyway, there’s a diverse group of people interested in this field and I don’t but heads with all of them! Some of us have fought so long and hard to have trauma recognised as important, we need to be careful of what happens when it does gain that recognition and becomes the dominant framework. It can be inconceivable that something so fundamentally respectful of people, something so essential and good could be misused or harm people. But such is the risk when any perspective becomes dominant. There’s more to us, to our stories, our lives, and our selves than trauma. Part of what it is to be human is to feel broken, to be aware of our own incapabilities and limits, to mourn what we could be. That story isn’t just about trauma, it doesn’t cut us off from those who lived blessed lives. We don’t have to sit on our side of the fence hating them, watching them live in the sunshine while we drag our mangled hearts through the darkness. There’s pain in all of us, loneliness, brokenness, and hope. This is the human story. It seems so deeply important to me to place trauma in that context, to – if you will – integrate it with our stories of what it is to live and love and be a breathing living collection of fears and dreams all wrapped in skin.

Grieving after suicide

/ Sarah K Reece / 2 Comments

I received this heartbreaking anonymous comment on a blog post I wrote a while ago called “Caring for someone who’s suicidal”

I cared for someone who was chronically suicidal and failed to protect them adequately. During a very short time of being left alone, while acting like he was feeling well, he did end up hanging himself and died. How do I reconcile my feelings of failing him? How do I ever find peace in his passing when I feel responsible for letting him be alone for any amount of time?

I sat with it for a few days trying to think of what to say. It’s really hard when you don’t know the person or the context, what they’re being told or finding particularly hard or helpful. I came up with this, and thought I would share it here for all the rest of us who are struggling with guilt and loss:

I’m so sorry to hear that. How do we find peace in something so tragic? I don’t know if anyone has told you that sometimes people work hard to protect us from their pain, they hide it and we are deceived. We question everything after they’ve gone, trying to work out if there were warning signs we missed and what we might have done. I don’t know if anyone has told you it’s not your fault, or if you are so sick of hearing that because it doesn’t make you feel any better. How do we live with the guilt and sense of failure of losing someone we loved? Is there any peace to be found?

Sometimes when we feel guilty we don’t even feel like we have the right to grieve. We are numb, or we hate ourselves, or we carry a weight around inside that is nearly impossible to breathe around.

It’s okay to grieve hard. It’s also okay to put them down from time to time, to lay them to rest and give yourself time to breathe and feel and laugh again. It’s okay to sit down with that sense of failure and look it hard in the face, very hard, and accept that this is part of what it is to love people, part of what it is to be human. There’s no peace to be found in this kind of violent loss, and yet there is a kind of peace in coming to terms with that, learning how to hold the pain and the conflict so it doesn’t kill us.

He didn’t die unloved. That’s a precious thing. I wish it was more powerful, so powerful that it saved all of us. But it’s still deeply meaningful. That’s a failure that’s not yours. You did care, and you did protect them, probably many times, through many dark nights. Sometimes we are not powerful enough to make the world be as it should be. To bring justice, truth, hope, light. We are small and mortal and life is large and some of it is brutal. It’s hard to forgive ourselves for not being able to do what our hearts so desire, to heal all the sick children and feed all the hungry people and give hope to those who can’t find their own. We are mortal, human, we face the darkness with love, and sometimes it is not enough.

So what now? You carry a darkness of your own now, a place where hope dims and pain waits like an ocean. You meet it with love and honesty. Reach out to people – some will not be able to talk with you or bear that pain, but some will. They will remind you you are not alone, that many of us have found our limits and grieve what we cannot change. Keep his memory alive but find ways and times to put down the searing pain and weight of his life. You carried him for a time, you will carry his name in your heart forever. But hearts are not made to be graves, there must be joy and new love, there must be spring again after the black winter when you are ready.

Much love xxx

What’s the deal with Integration?

/ Sarah K Reece / 15 Comments

Integration can be a Hot Topic for those of us with multiplicity. It used to be (and sometimes still is) pushed as the cure for our illness, our only chance to be a normal person, and have a normal life. People who couldn’t integrate, didn’t want to, or tried to and had it fall apart on them were seen as more sick, less recovered, less committed to recovery, treatment resistant, or basically in some way a failure. So it can be loaded topic with heated diverse ideas and often some firm opinions and rough experiences for people. Hence why in 3 years of blogging about multiplicity I haven’t wanted to tackle it before now!

It doesn’t have to be so divisive of course, the issues really aren’t about integration, they’re about this idea of failure. If integration is an option rather than a cure, a lot of the heat and stress goes out of this topic. That’s certainly how I prefer to talk about it.

So, let’s start at the beginning, what the heck is it? Well, that can be tricky to define, because different people and different books use the word to mean different processes.

Fusion or Merging

This is the most common use of the word integration. It refers to the combining of two (or more) parts into one. Separate consciousnesses, or selves, become a single self, combining memories, skills, and attributes of both. For those who use a clinical dissociative framework, an analogy might be the dissociative walls between parts coming down, so that every part can be out together, all the time, sharing all of life, all the memories, and all the energy. Generally speaking integration is only used to describe the merging of all parts into one, but sometimes I have come across variations in that too. There’s a experiences of fusion shared in the biographies The Flock, Katherine It’s Time, A Fractured Mind, and Not Otherwise Specified.

Retirement

Some people use integration to describe a system where all the parts but one have been retired from coming out. One part now runs all the life, and the rest live inside where they may be sleeping, playing, advising, or doing their own thing, but they don’t come out any more. An experience of retirement is shared in Today I’m Alice.

Passing On

Some people use integration to mean that all the parts except one go away. People might pray away parts, have them exorcised, experience them ‘die’ (without harming the body), or simply find that they have fulfilled whatever function they were needed for and disappear. Sometimes passing on happens spontaneously, sometimes it is the specific goal of therapy or an intervention of some kind. There’s experiences of passing on in Little Girl Fly Away, Fractured, and A Life in Pieces.

Co-operation

While most people see this as an alternative to integration, sometimes this is described as integration, which can really be confusing! With co-operation the parts work together as a team, sharing the body and life and making decisions together. Basically, it’s a multiple system that functions well with parts looking after each other, sharing information and resources, and putting effort towards common goals. There’s experiences of co-operation shared in First Person Plural, When Rabbit Howls, The Sum of My Parts, and Five Farewells.

Several of these outcomes are described in In Two Minds. Most of these books can be borrowed from the DI Library.

So, if you’re reading or hearing someone talk about integration, it can be really helpful to know what they’re using the term to mean! Of course, a person with multiplicity may use all of these approaches, at the same time but with different parts, or at different times in their life – perhaps they work on co-operation which leads to fusion, or perhaps some parts fuse, some retire, some pass on, and the rest co-operate.

Integration is a word that also has different meaning in other contexts. It’s often used in trauma therapy to refer to someone’s ability to process, think about, and link into a personal narrative an experience that has been jarring and out of sync with their sense of themselves and their story about their life. In that context it is always seen as a highly positive thing, and that may be part of the challenge about the way it is used with multiplicity – because in this case it describes a process that people experience in diverse ways, ranging from profoundly welcome and life-saving, to highly distressing, destructive, and disabling.

Integration can mean a connection, as in technology or biology when we’re talking about different processes working together – for example “visuomotor integration” – how well our sense of sight and our muscles work together. Integration can be about harmony in difference, such as architecture that integrates well with the landscape. In science integration is the inverse of differentiation – one example of differentiation from biology is the process by which cells change from being generalised (such as the stem cells that start off building an embryo) to being specialised – becoming nerve cells, muscle cells, and so on. Integration is the opposite of segregation when we’re talking about civil rights or putting kids with disabilities in mainstream schools. When we’re talking about immigrants and culture, the word integrate is often used to mean assimilate – that is, the minority or inferior group should adapt and conform, to become absorbed into the dominant culture.

I see some obvious parallels in these various uses of the word integration and how it is experienced by people with multiplicity. Some people see either fusion or co-operation as the best goals for people with multiplicity. Some see passing on as the only possibility. Some people with multiplicity deeply desire fusion, while others are aiming for co-operation. Some people are terrified of losing parts. Some systems have different parts with very different goals, which they may try to impose on each other and team up with other people such as a therapist, to try to enforce.

Where the big issues come into play is often not what the goal is, but who chooses it and how it is defined. If a therapist, healer, priest or so on chooses the goal for a system then their efforts to create that may be highly traumatic, no matter what the goal is, or how well intentioned that person. If a goal is presented as the only possible option for a good life, then people can be devastated if their system simply doesn’t fit it or can’t sustain it. There is not one experience of multiplicity out there, there are hundreds of thousands. There is not one experience of integration either. Here are some diverse stories I am aware of:

  • A person with multiplicity who works hard in therapy to fuse back to one part, and discovers that for them, a great deal is lost in the process: memories, skills, and so on.
  • A person with multiplicity who experiences a part telling them that they have done what they were here to do, and their lifespan is over. A ritual goodbye is performed, and a small private funeral. The part ‘dies’ at peace.
  • A person with multiplicity who draws upon their faith to pray with a trusted person in authority to have deeply distressed or disturbed parts taken away, and experiences relief.
  • A person with multiplicity who found a new, more calm and grounded part formed in adulthood and guided their system through stress and conflict.
  • A person with multiplicity who over many years, without therapy, learns about their other parts, negotiates their way through differences, and comes to work together as a team.
  • A person with multiplicity who works hard in therapy towards fusion, who’s other parts experience grief at their loss of separate self, but who finds deep wholeness and relief in integration and embarks on a new life direction with zest and hope.
  • A person with multiplicity who transitioned and went through sex change surgeries so the part of that gender could have time in a body they felt comfortable with.
  • A person with multiplicity who has no intention of fusing but finds that fusion happens gradually and naturally as part of trauma healing, and comes to term with their new single identity.
  • A person with multiplicity who is convinced by someone in authority that an exorcism of demons is their only hope for a good life, and finds it ‘works’ for several years as the other parts are deeply alienated and buried in their psyche, but then they return even angrier and harder to communicate with than before.
  • A person with multiplicity who is thrilled to fuse with their other parts, only to find that when they are stressed they split back into parts again.
  • A person with multiplicity who thinks that all the parts have gone, only to find a batch of new ones they didn’t know anything about.
  • A person with multiplicity who fused, split, fused, split again, and finally fused for good!
  • A person with multiplicity who had parts die only to come back to life some years later.

As you can see, people’s experiences are diverse!

So the stress about integration comes from many places, people who want to fuse but can’t seem to, people who are frightened that parts may die, people who are being strongly pushed into a process that doesn’t fit them well, or who are being told they cannot be whole or healed unless they do a particular thing or do it in a particular way. For some people fusion is amazing. I have seen it and it’s a marvel. For others it is akin to gay reparative ‘therapy’ for people who don’t want it, where people are trying to ‘cure’ something that is a natural difference in how people are, in the process making them much more vulnerable to suicide and self harm. I believe the risks of harm are higher when people are afraid, made to think one way is their only hope, and when they have no exposure to peers and diversity and are vulnerable to the ideas of a person with power in their life. I think the risks of harm are lower when people are able to sit with the idea that there may be many paths for people, and one is not necessarily better or worse than another, that what is supposed to happen for them will happen, and that whether you have single or multiple selves if you are decent to people, animals, and the planet, you are not a failure.

It is entirely possibly there is more than one form of multiplicity, some of which respond well to fusion or other types of integration, and some of which don’t. Certain philosophies and branches of neuroscience consider that it is a sense of having a single self that is an illusion and that all people are a collection of multiple selves and processes. The mind and consciousness are simply amazing. Please be reassured that if you have had bad or frightening experiences trying to navigate multiplicity that you are not alone in that, and that people, parts, and systems can recover.

Personally, when I was first diagnosed with DID in 2007, I had a plan. I was going to be a model patient, obey every instruction, and integrate within a year. I wanted more than anything in the world not to be multiple. I wanted to have a life, to finish my degree, to have a job, to be a parent – and I didn’t think I could do that if I was multiple. Putting my system under that pressure knocked us around badly and our functioning started to fall apart. We’ve ended up walking a much more roundabout route, focusing on specific challenges such as accepting our sexuality and rebuilding our social support, and figuring that if fusion is supposed to happen for us, it will happen in its own time. I’m okay with that! I don’t need to be multiple, it’s not what makes me special or gives my life meaning or gives me an identity. I’ll still be the strange mad creative oddball we are now. I also don’t need to be single to be whole, healed, or have hope. I don’t think single is the best, right, or only way for people.

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

Alone and naked in front of the crowd

/ Sarah K Reece / 4 Comments

Stuck for words. It’s late at night again and I need to go to bed but I want to write. There’s so much going on and I want to share but I can’t put my thoughts in order or break things down to something that makes sense and stands alone.

I went to bed last night and broke into small pieces, sobbing my heart out while Rose sat with me. I wept until I couldn’t breathe. I cried so hard my eyes were still swollen this morning. I felt utterly lost and full of pain.

I’ve always been this way, cried like the world was ending. I’m reminded of a guy I read about who was suffering from severe depression until he figured out how to manage it ‘Now I just cry a lot’. I’m reminded of the people I’ve sat with as they sobbed with utterly broken hearts, how much courage it takes to sit with someone in that place.

I’m painfully aware of being on display at the moment, while we’re trying to get pregnant. Unsolicited advice, scrutiny, judgement. It’s hard to speak in this place, hard to share.

I went and saw my shrink today. We talked about work, about the self loathing that’s been so intense lately, the house move, the sense of doubt. We talked about my peer work, my sharing of my vulnerability, the way I pull apart my image of competence and show people my woundedness. She described it as being alone and naked in front of the crowd. The phrase has rung in my mind all day since. And this, the insecurity, the doubt, the pain, was the cost of that. Perhaps if I can accept that, there might be less to hate about myself. We talked about doubt being my gift, a thing that allowed me to untangle myself from beliefs that were killing me, to question powerful people and paradigms, to listen to people because I’m not certain I know the answers, and the cost of that, a sense of being lost and confused by the world. The prices we pay for our freedoms. It’s a strange and deeply relieving thought.

Trying to start the local Hearing Voices Network fills me with ecstasy and triggers deep self loathing. Imposter syndrome, a terror of leadership, of power, of people listening to me or following my advice comes over me, I find myself at the bottom of a deep ocean of self hate that’s almost unbearable. People reach out and their compliments are like a breeze blowing on the surface of the black water, down at the bottom I’m still drowning.

Rose and I had the most lovely evening together. She cooked me dinner, we baked a cake for a friend’s birthday. It was beautiful, full of simple joy. My mind was clear and quiet. I don’t feel like I’m drowning. We made little cupcake decorations and sang to each other. Every morning I’m still surprised to wake up and find her in my bed. This woman who glows in the afternoon light, who reaches out to touch my back when I cry, who reads me to sleep when the night stretches long before me. The people who have reached out, to say thanks or that I am in some way a useful person in this world, their words come back to me and I can hear them more clearly. There’s people, like Rose, who believe in me, for reasons I can’t fathom and in ways that make me terrified of failing them, paralysed by my conviction that I’m going to let them down. But there’s also the gasping breath after the sobbing cry, the kind touch, the sunlight golden through the window. The ocean has receded tonight and a cool wind blows in my mind. I’m grateful for love, grateful to be here in the dark writing, grateful for the days I can bear touch, can accept kindness.

I don’t believe in mental illness (or, rewriting the DSM)

/ Sarah K Reece / 10 Comments

I don’t particularly believe in DID, schizophrenia, borderline personality disorder, or post traumatic stress disorder. I don’t believe in mental illnesses as parallels of physical diseases – cholera is caused by a bacteria – schizophrenia is caused by faulty genes. I believe in people’s experiences. I believe that the pain, confusion, suffering, terror, and risks of what we have called mental illness are real. I believe that people experience multiplicity, mania, hallucinations, tics. But the way we understand them – as symptoms of illness, the process of diagnosis, categorisation, research, and treatment – I’m unimpressed.

I recently read a dark and brilliant review of the DSM by Sam Kriss – written as if the manual was in fact a dystopian novel. It is brilliant, sad, and moving.

The DSM is the ‘psychiatrists Bible’, a massive reference of all the diagnoses we hear about; depression, bipolar, schizophrenia. In my opinion it is a massive project started for very legitimate reasons that has become a horrifying millstone around the necks of many of us.

Every few years it is re-written, updated, with much argument. A diagnosis is removed, or several collapsed together. A dozen or a hundred are added. A few jump categories. A few thousand people are startled to wake up one morning and find their condition doesn’t exist any more. A considerable number of the conditions are very rarely diagnosed, particularly in poorer areas (at least locally) where Depression and Anxiety are the diagnoses favoured by doctors who are not even aware of most of the rest of the options.

The idea behind a manual isn’t a bad one, to my mind. Language is important. Having words for experiences can be profound, the difference between mute suffering and solidarity and strength in the face of adversity. Our diagnostic manuals (the DSM and the ICD) were developed initially as a way of communicating between shrinks. A shorthand for what a patient was struggling with. It was important to define the terms because shrinks working independently, separated by continents, were starting to use the same words to describe vastly different experiences. We were beginning to explore the idea of madness, to break it down and tease it apart and discover that it was not all the one thing but instead many different things. We built new words for these new ideas and then needed to secure their meanings so that the language was useful.

We modelled the language upon the medical language of disease, with the expectation that the same cause and effect approach would be helpful. This causes that. The reality of human psychology is at times, highly predictable. We share certain needs, certain fears are near-universal, certain responses instinctive to most of us. But we are also complex. We have drafted massive tomes about abnormal psychology and have little idea of what, if anything, is left to be understood about normal psychology. We are beginning to grasp the frustrating reality that more than one cause can have the same effect – people develop eating disorders through grief, dissociation, fixation on weight, and chronic digestive diseases. We are beginning to understand that one cause can have different effects – some people with dissociation struggle with eating disorder issues, others with chronic sensory losses, memory issues, or depression. As we attempt to capture these nuances, our manuals get thicker and thicker.

With thicker manuals comes a big issue – more and more human behaviour is gathered into this category of ‘abnormal’. Psychological illness, injury, and normal functioning become tangled. Defining abnormal becomes nearly impossible. For example; if more than 70% of people who suffer three major life stressors in a year will struggle with an episode of depression, is this a normal or abnormal process?

Furthermore, is it an illness? Physically sick people who are fighting infection experience depression during the illness because they should be resting to heal. Are we able anymore to delineate between depression as something that is harming us, sucking the life from us, killing our joy, and the lethargy and pain and inward gaze of grief?

Increasingly mental illness becomes fuzzy, difficult to define. Another marker of ‘abnormal’ has been ‘unusual’. This is why being gay was in the DSM. If more people are straight then gay, doesn’t that make gay abnormal? The dangers of defining human existence by the tastes and appetites of the majority are such that almost certainly all of us are in some way ‘abnormal’, and the cost of this, the rejection of so many people from this hallowed goal of normality, are massive.

Abnormal is often shorthand for extreme. Ah! they say, you simply fail to understand the spectrum! Yes we all experience a little of this and of that, but until you’ve seen mania full blown, an acute psychotic episode, someone so debilitated by anxiety they cannot leave their house, you simply can’t appreciate what real mental illness looks like. This definition seems to work until you look at other examples of ‘extreme behaviours’, at social activists who put their lives at risk for a cause they are passionate about, at kids moving across the country to have a chance to train in the artform they eat and breathe, all the hope and joy and optimism of a couple in love and about to get married. Extreme can be dangerous, can be horrifying and destructive. But its also the place of hope for so many, their centre, their joy.

Abnormal can be shorthand for pain. When I write things like “I don’t believe in mental illnesses” that does NOT mean that I think people are making their experiences up, that they’re weak, lazy, vain, or self indulgent, or that there is not a real, overwhelming experience of profound fear and pain that can destroy people’s lives. The suffering is absolutely, definitely real. I have been there myself, I have been there as others have been broken or battered by it. I don’t actually believe we need a shorthand for pain. People use their own language to describe their experiences. They talk about being broken hearted, or empty, about feeling like their life is on fire, about the void that eats them alive at 3am when all the world is sleeping. A lot of the reason our manuals remain in such use is simply that we have organised our systems of care around this process of diagnosis. It’s a way of discerning those who need help. But I have a massive problem with the kind of help that starts by assuming there is something wrong with the person in pain. Sometimes whatever form the suffering takes does come out of the sky like lightning without warning and seemingly without sense. For others, suffering comes out of loss, trauma, loneliness – things that always cause people pain. There is nothing wrong with someone who hurts when they are harmed. It should be possible to grieve, to suffer, to need time off, to recover, without signing up to the idea that this is wrong and there is something wrong with you. As I’ve said before, if the process of mental health is about not hurting anymore, no matter what, then we’re trying to create psychopaths, not support humans.

‘Abnormal’ is often these days simply a way of referring to anyone who needs time off work or income support. Which again, is heartbreaking. It’s one of the reasons that deeply grieving people are now able to be diagnosed with depressive or adjustment disorders – because without this label of illness doctors are unable to compassionately exempt them from work or support them to access counselling or other treatments. Mental health as an idea starts to become twisted into something hyper-individualistic; someone who experiences none of the extremes of the human experience and never needs help from anyone to navigate life.

The DSM goes beyond a dictionary of terms because it links descriptions of single experiences together into syndromes, collections of symptoms that are given a diagnosis. These clusters shape diagnosis, treatment, and research. For some people, the cluster is a very good fit, describing all of their concerns and neither leaving something out nor adding something in. For many, they are not broad enough, so in order to capture all of the troubling experiences, they wind up with many diagnoses. Because of the medical model framework, this is seen by most as a sign that this person is sicker than someone with only one – or no diagnoses, when it doesn’t indicate anything than not fitting the common clusters! For some, the diagnoses are wildly inappropriate, as they have only one or two markers but wind up being diagnosed with the whole set in a dangerous prediction of their future experiences.

Some of the clusters are so poorly defined that the people group described by them vary so widely meaningful research is nearly impossible. For example, Borderline Personality Disorder requires 5 of 9 symptoms to be significantly present. Some people have all 9, some have one set of 5, others have the remaining four and a single overlapping symptom! To make diagnosis of BPD extra complex, many people who have experienced particularly childhood trauma will have some or all of these experiences for some years, and many people in current life crises will experience them also – yet this disorder describes an enduring pattern that plays out over many years. My experience has been that most young, distressed women in the mental health system will receive this diagnosis at some point. That is NOT to suggest that people don’t struggle with these issues long term, clearly many people do and some are my dear friends! But how the heck are we using one term for two people who potentially share a single experience in common?

Conversely, some diagnoses are defined so tightly that hardly anyone fits. Eating disorders can be like this, where a single symptom such as menstruation can see a woman bounce between one diagnosis and another and back again. In some categories the diagnoses are so narrowly constructed that most people who are struggling with a major issue in that area are given the catch all ‘not otherwise specified’ diagnosis. Which makes me wonder how well we are doing at the initial goal of creating a useful language for people.

The clusters exist for a reason – because they are commonly observed. But there’s two obvious dangers with grouping experiences like this. The first is that ‘commonly observed’ is going to not fit some people. Maybe even a lot of people. Which would be less of a big deal if we treated these syndromes like syndromes, but we don’t. We treat them as scientifically valid disease entities, which is a huge problem when someone doesn’t fit. Generally we start stacking them, which is similar to the effect on the stigma the person experiences. Two diagnoses is twice as bad as one when you have to prove you’re ‘well’ enough to work. Some people wind up with ten or more, each of which is confusing, depressing, and further alienating them from any sense that they might just be a ‘normal’ human having a tough time.

The second major risk with these clusters is the grouping of cause and effect, the mixing up of correlation and causation. For example, schizophrenia, which links experiences such as hallucinations to others such as dulled emotional expression or withdrawing from relationships. Each of these is seen to be part of this disease and yet one can cause the other, can have nothing to do with the other, or might not even be present for someone. Isolation due to bullying makes children more vulnerable to psychosis, for example, but in this case the trauma is a a key cause of the isolation, and both the trauma and the isolation are triggering the psychosis. People who experience hallucinations often find their close relationships become a mindfield of misunderstanding, miscommunication, and power battles about how to navigate the experience. Dulled emotional responsiveness is a common effect of feeling stuck in a double bind. Some voice hearers have no other symptoms of schizophrenia yet find themselves with that diagnosis for the simple reason that no other ‘hears voices but isn’t harmed or impaired’ category exists. Just because things may occur together does not make them all symptoms of a disease. Even more importantly – we cannot easily even perceive things that fall outside of our categories and language, which is why the idea of hearing voices meaning severe impairment has lingered on for so long – voice hearers who are not distressed or impaired don’t tend to volunteer to go round to their local shrink and talk about it!

I agree that we need a language, but I disagree that the DSM provides a good one. Utterly embedded in a language of deficits and loss, there’s little room for individual experience, for hope, for complexity or nuance. Abnormal becomes nebulous, and normal becomes a flatland of limited emotional range reserved for those to whom little has ever happened. Something terrifying happens when people are seen through this lens.

It doesn’t have to be this way. We can structure things differently. Ron Coleman wrote his own DSM Zero, a blank book for people to fill in themselves. Another shrink who’s name I can’t recall said in his mind, the entire DSM could be summed up to three states: “I feel bad, I feel crazy, or I make other people feel bad or crazy.” The rest was merely details. The underlying assumptions of the DSM about sanity and madness, about what is normal, what is human, and where the fault lies when people are suffering, are ones I find toxic. They dislocate people like me from my own self, from my own language and from my sense of being human and part of humanity. We can pull apart the edifice we have created and build something new, the way I have done for myself in understanding my experiences of multiplicity and psychosis. Personally my suggestion is to define terms but not cluster experiences, to make support possible without indicating whether ‘pathology’ is internal or external (ie whether the person is needing extra support because of things happening inside them or to them), and to be willing to use and respect the common terms people find helpful instead of forcing them to learn a new language of complex pseudo scientific terms. I think it’s okay to say broken hearted instead of depressed, or empty and chaotic instead of borderline. I think research becomes more useful when it looks at experiences instead of diseases formed of clusters of experiences, and I think those of us who live outside the bounds of so-called ‘normal’ are more likely to find hope and joy when we aren’t sold a story about ourselves that’s saturated in ideas of mental deficiency and impairment.

When sanity is lethal and madness has value

/ Sarah K Reece / 7 Comments

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

Tribe Night

/ Sarah K Reece / Leave a comment

image

At least once a month Rose and I set aside some time to spend just the two of us. No friends or kids or work or stress, just us, celebrating us. Often we don’t call this a date night as not everyone in my system is ‘dating’ her, but instead she’s coined the rather lovely phrase Tribe Night. What we do depends on who feels like they need some time together, and how much money we have. As Rose is still waiting unpaid for her new job to start, tonight is a budget one. We’ve got movies from the local hire store, popcorn, and the half eaten gorgeous gingerbread house that was a Christmas gift from a generous, creative friend who cooked it in her tiny toaster oven in her apartment and probably lost a few more sanity points in the process.

Other favourite tribe night things to do are nights at the beach, hanging out in the trees at our local park, going to the movies, our favourite local Asian fusion restaurant, going out to fun art or cultural events, especially the free kind where dressing up can happen, hanging out in the nude with all the curtains drawn and good music, (some of us are lovers), camping nights away, and for the really introverted, reading together in bed.

Sometimes we have to work around health issues too, I read this gorgeous blog post the other day and thought it had great ideas for not-well hang out times: 10 Crip Date Ideas for the Disabled/Chronically Ill/Mad Person in Your Life

Have a good one folks. Don’t forget romance is not the sole domain of lovers.

Inner children – shame and threat

/ Sarah K Reece / 2 Comments

For many of us with multiplicity, figuring out how to live with inner children can be a huge challenge. I’m certainly no expert on this and don’t have this all figured out with my own, but some guiding principles have worked well for us that might be of help or interest to you.

The first massive challenge for us was to learn to cope with the deep shame we felt about them. For example, we have one who is 5. She’s very sweet, curious, and playful. We first noticed her when we attended uni one day, and she turned up thinking it was her first day of school. She was fascinated by the shiny wrapped chocolates in vending machines and terribly anxious that maybe she’d forgotten to put her underwear on that morning. We were co-conscious and felt blind terror that someone might notice her ‘weird’ behaviour. Our ‘intellectual adults’ in particular were dismayed at being mistaken for this impulsive, cheerful creature who balanced on the edges of the garden beds and skipped down stairs. It felt like a profoundly visible difference, a severe disability that would stop people seeing us as smart or dignified or other things that are really important to some of us. So our first reaction was mainly horror.

Shame went deeper too. Having kids tell the white lies all kids tell, exaggerate an event, make it sound more exciting or themselves more brave, skip something they’re worried they’ll get into trouble over… We didn’t cope. We first hated ourselves with a deep passion. When we realised we were multiple, we hated them instead. For a long time we did our best to completely suppress them.

Reducing this shame was partly about understanding them in context. It helped us to read about attachment disorders and realise that the issues we struggled with were very common. It also helped to spend time with other kids that age and realise that our expectations were crazy high for our own. It helped to look at photos of ourselves at those ages and realise that although we had felt mature and responsible and old at the time, we were just very little. We had some mad ideas about ourselves as children that we had to confront, and some internalised ideas from other people we had to start to question.

Fortunately, system members who felt less threatened by the kids had very different reactions to them. One in particular was very co-conscious and curious about the way that people didn’t pick up even when the 5 year old was out. People just don’t think of multiplicity. Even pretty overt behaviour wasn’t noticed, particularly by strangers who didn’t have any idea of who we were usually, or what to expect from us. It was a startling kind of freedom.

We also started to notice some of the pain of being a child in an adult world. How difficult life could be for them, how lonely they were, how bewildered they were by adult concerns and choices. Once this sweet little girl came out, curled up on the couch, and waited for someone to bring her something to eat. She ‘wasn’t allowed’ to open the fridge or the freezer or make a snack, and she didn’t know that no one was coming. Life can be strange and lonely when you miss great chunks of it and the rules change without anyone telling you.

Being able to take a step back from feeling overwhelmingly threatened and just observe and learn was important. This was a slow process for us, years rather than weeks. A system in survival mode is a system geared to feel suspicious and threatened by everything! Initially there was no trust between us and a lot of scrambling to stay in charge and in control by the ones who so deeply feared losing it. All our models of losing control were about disability and loss of functioning, people who wound up in hospital needing constant care. For a long time it felt like we were fighting for our life, and fighting a doomed battle at that, that life long severe mental illness was our destiny while these parts existed. Discovering that sometimes kids brought joy and hope too was a massive surprise and helped us begin to question our assumptions about what it was to have inner kids.

Humour and compassion are powerful alternatives to shame. Over time I found I could re-tell the story of having a five year old switch out at uni and glue herself optimistically to vending machines for significant periods of time hoping chocolate might come out of it… and laugh, and make other people laugh. Life is bizarre and absurd! Taking it, and ourselves, utterly seriously is a quick way to find ourselves forever disappointed, threatened, and miserable. Embracing the humour and pathos in equal measure has served us well. It’s not about laughing instead of crying, but as well as crying.

These processes of learning and listening and questioning built some empathy and we began to relate to the kids as real people instead of just a burden or nuisance. They weren’t just symptoms of a disorder, or here to make my life difficult, they are just as real as I am. Their joy and pain just as real. It became less stressful to let them have some time out. These days if the 5 year old is out when we’re buying groceries (or more likely, candy) then people such as check out operators generally talk to us as if we are intellectually slow. We’ve stopped being so threatened by that and take it in our stride. There are some awesome people out there with intellectual disabilities. Being mistaken for one of them at times isn’t the end of the world. This is part of what it really means to be inclusive and to believe that people with disabilities are still people. If you think you’re comfortable with and inclusive of a group but are mortified if someone mistakes you for one them, then you’re a long way from walking your talk.

(I’ve seen this a lot, where the act of reaching out and connecting with a marginalised group is supposed to reflect well on the generous supporter, and it’s really all about their needs. They love to be seen as inclusive and brave but it’s nothing to do with equality. Try mistaking a mental health worker for one of the clients and see how thin the veneer of their ‘community’ is as they jump to assert their true status. This is doubly offensive if you’re there as one of the clients!)

Of course, threat doesn’t just go one way. An inner 14 year old who has figured out that their body is adult and flirts with scary drunk men has learned a powerful way to scare and punish the rest of a system who are constantly trying to suppress her. (ask me how I know this!) Kids get scared by their inner adults who are angry, powerful (but not all powerful) figures who feel they are more real, more important, their needs paramount, and their ideas about life decisions the ones that should happen. Kids don’t just get out voted, they often don’t get a vote at all in these systems. Imagine the sense of threat that comes from having other people who don’t like you, don’t care about your pain or needs, and don’t even see you as ‘real’ making choices about your life, your home, your family, and your body. Sound familiar? For some of us, we build our systems on the same dynamics of family or school, the world we grew up in, and sometimes that’s a terrible thing.

Systems that are structured on abusive dynamics, as mine was, deal with the fall out of that. The most powerful might win all the time out and decision making, but the alienated rebel, undermine, sabotage, manipulate, seethe with resentment, or submit and hate themselves. Those who have no choice or overt power protest in passive aggressive ways and behave without dignity. The traumatised stay locked in severe trauma, the isolated express pain and loneliness through symptoms such as phobias, nightmares, flashbacks, tics, and sickness. This is often what we call DID or multiplicity, when in fact it’s a normal response to a really abusive system. Multiplicity with a healthy use of power internally looks very different. It often doesn’t even fit the diagnostic criteria for DID, and we have no alternative framework or language to describe it.

With time and gradual connection, there’s more empathy and less dehumanisation. With this has also come a sense of protection and responsibility. As we’ve learned to unpick our sense of shame about our inner kids we’ve found it easier to understand and interact with them. Long ago, pre diagnosis for myself, I was reading about multiplicity because someone close to me had been diagnosed. I read about a woman with multiplicity who registered that the other patient she saw in her therapists waiting room was also multiple. She gave the shrink a gift of crayons to pass along. When I read that, something deep inside me burned with fierce desire. I wanted my own box of crayons, my own signal that this was okay. At the same time, the iron fist of suppression, refusal, denial locked me down. I absolutely could not do something as simple as buy myself crayons, because that was opening a forbidden door. It was years before I bought a packet of crayons and a colouring book for us, and it was for us, like each step on this road, an act of courage and faith. So very simple, looking back, but so profound and needing such bravery to be willing to face what came up, to trust that there would still be life and hope. When we started Bridges, the face to face group for people with dissociation and multiplicity that we ran weekly for 2 years, we brought crayons and paper to every meeting, trying to pass on this gift.

How simple it has turned out to be, to understand that we’re all sailing in the same ship together. To find joy in the differences between us. Everything we read was about coming together, becoming more like each other, finding a common ground and merging into it. Everything we’d tried was about drawing a line that defined who ‘Sarah’ was and only allowing out those of us who fit within it. Peace has been the opposite process for us. Letting go of that attempt to control who we are and accepting who is here. It’s okay if people get very different ideas about who Sarah is depending on who they meet first. We lead the way by being okay with it ourselves, and most people simply follow suit. We had a house-guest here for a few days this week, who quietly observed to Rose – “Wow, it’s like Sarah’s a different person. I didn’t think she’d be the kind of person who games (first person shooters, by preference, particularly L4D2). There’s a photo of a pretty butterfly on one of her computer screens, and she’s killing zombies on the other!” To which Rose responds “yeah, I see what you mean. Some people are like that!”

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

One of the weird days

/ Sarah K Reece / 6 Comments

Yesterday was one of those blah days where nothing feels like a good fit. I tried lots of approaches, none of which helped, and shrugged, headed to bed and figured I’d feel differently after a sleep. Well, I was right. I had intense nightmares, of the kind where you wake up and feel so distressed you want to throw up. The content lingers like you’ve watched a vivid, personal horror movie that’s burned images into your mind. It’s been awhile since they were an issue! This morning was meltdown territory as a result, panic and intense dread. I took a bath, read some book, wrote in my journal, and scraped myself together enough for my appointments. Today was admin appointments, getting stranded with a vehicle that needed engine oil, and having a blood test – STILL no bad reactions, even on a horrible day like this one! Did, however, re count my days when I got home and discover I’d done this one a couple of days early by accident and will have to repeat it. Sigh.

I saw a disability employment person and cried about how stressed I feel about my business at the moment, wondering if I should be pursuing employment instead. She ‘reassured’ me that I wasn’t passing up some wonderful opportunity – most people like me with an episodic illness are unable to find good work. We get casual, short term, poorly paid work, issues with workplace bullying, and more often than not – contracted volunteering. So if I’m going to not get paid (or paid well enough to survive) and lose my job every time my health wipes me out for a month – I might as well be running my networks and continuing to build my business. Right? The anxiety levels have been tremendously high about it lately, I think trying to get pregnant is sending me into panic mode a bit. It a hard road to walk sometimes. And a brutal reality to face what my openness about multiplicity and psychosis are costing me – and what they cost millions of other people. I hate this.

On the plus side, I’m continuing to clean the house up (it got a bit swamped over Christmas, plus I need to make room for a guest and also Rose moving in soon), keep the garden alive through the heat, and sort out food and meals.

I feel way better than I did this morning, but still ‘off’. unsettled and not myself. Haven’t settled into the new year yet. I don’t have a sense of being on firm footing. I’m picking up on other people’s feelings, seeing the world through many different eyes (but not ours) – perspectives of friends, authors of books or articles I’ve read, proponents of particular ideologies. I move between them feeling the clashes and contradictions like burning places in my mind. Hot and sparky. Then I feel myself move back from all of them and suddenly nothing seems real. I find myself walking outside of my home and looking at a tree thinking – ah, there it is. Reality. The thing beneath all the theories. I feel slightly swamped and detached at the same time. And oddly lonely. Part of me is waiting to find out if I’m pregnant and it’s impossible to feel much about that so I’m not feeling anything. Not even numb, just like I’m holding my breath. I can’t breathe or feel again until the cycle ends. Last month I actually felt pregnant some of the time. This time I don’t at all. I don’t even feel like I’m completely here. Man, these reactions are unpredictable!

Ticking away in the back of my head, as always is the book. There’s always more reasons not to write it than there are to write it. I feel like I’m slogging through a thicket of brambles each and every time I just sit down at a keyboard or notepad and work on it for an hour. I don’t want to put myself out there as some kind of leader. I don’t want to present myself as an expert or have people follow my advice. I am aware – like most people who deeply investigate a topic – of the truly mammoth amount of material I haven’t yet read, ideas I haven’t digested, communities I can’t possibly represent. I hate it. I can’t do justice to the field. The only thing that keeps me going is reading what’s already out there and realising how huge the gaps are and that even my pitiful efforts are an improvement on some of the rank dogma that is messing with people’s lives. But hells, it’s hard to remember that.

So, here’s to the weird days. The not recovered, not perfect, not trying to lead anyone anywhere days where despite feeling like my brain is not entirely in this dimension I’m still a decent and useful human being. The biggest crisis today wasn’t even mine, I’m a support person in the backdrop of someone else’s rough time. (we have an extra house guest on our couch for a bit) I’m still needed and still loved and we all half limp half dance along together I guess. Missing my friend Leanne like hell. Signing off from the Colony. (she would get that, we used to write. My place was the Colony and her’s was the Outpost. All the shorthand and in jokes that die with a friendship.) Just breathing.

Awesome quote: mental health and dungeons

/ Sarah K Reece / 5 Comments

I’ve written before that I learn as much from fiction about madness and sanity as I do from my library of books on mental health. For the Pratchett fans among us, I’ve always loved the mottos Vetinari (the leader of a large city) lives by, such as :

Never build a dungeon you wouldn’t want to spend the night in yourself. Never build a dungeon you can’t get out of.

I feel this is highly applicable above for those of us working in mental health, that is :

Never create a resource it would be beneath your dignity to seek support through.

Would not the world then be a much happier place? I rather think so.

Buck Angel – trans and diversity

/ Sarah K Reece / 4 Comments

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This awesome dude is Buck Angel. He was in Adelaide recently doing a number of shows at part of our Feast Festival, which is our annual queer pride event. I was fortunate enough to get along to several of them. I first met Buck as an amazing life size golden statue of him by artist Marc Quinn, that’s in our Art Gallery of South Australia.
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Photo from this blog.

I was blown away when I first saw it, that confidence, the way his tattoos have been carved deeply into the statue… So beautiful. To display his unusual body (Buck went through ‘top’ but not ‘bottom’ surgery) with such a sense of contentment and certainty about who he is just blew me away. Apparently it’s not unusual for people to be deeply moved, particularly trans folk.  Then I heard the subject was coming here and I got to hear some of his life story, his transitioning, to hear about how this statue was made and brought all the way to SA. It’s been amazing.

I talked with him a little about the overlap between the trans and multiple communities, the need for more understanding and acceptance. I’ve been building more links between these communities in my work on the Dissociative Initiative. My experience has been that there’s a lot of trans people who experience multiplicity, and a lot of people with multiplicity who have trans parts/personalities. The mental health and the trans supports however, don’t always get along.

Buck got it. His messages of loving your body, and embracing your identity, and not letting the world tell you you have look a certain way or have certain body parts to be who you know you are is a powerful one, especially for trans members of multiple systems. Some of us transition and some, like me, never will. (More about my experiences in What is a man?) I live as a male in a system full of female personalities and a body identified as female. Learning to be comfortable with this is so much easier when you have a hyper masculine, “I love my vagina”, pro diversity role model like Buck.

We talked a little about the massive changes legally and socially that have happened, just in the time since he’s transitioned. It makes me hopeful that things are going to change for those us with multiplicity, who currently are seen as mentally ill, treated as dangerous, or the punch line of a joke. There’s a whole community of trans people who can relate to our experiences around those issues! These are people who understand fears of being outed, how our relationships, housing, and jobs can be at risk, the pressure of trying to pass so no one will know we are different. That’s the reason I’m public about being multiple, to start that change happening. We shouldn’t have to hide! We can find ally’s in communities like this and support each other.

Buck told me – it doesn’t take many of us speaking up to change things. Just a few voices make a difference. I believe that.

Book is happening

/ Sarah K Reece / 2 Comments

2014-12-13 20.59.20-1It’s consuming. But it’s happening. A book about multiplicity. It comes in spurts, days where it’s writing itself in my head constantly and flowing, then depressing blocks where nothing makes sense or connected with anything else. I think I may have finally found a structure that works more closely with the way I write this blog – which I should find a lot easier to work with. I’ll keep you posted!

 

 

Art with friends

/ Sarah K Reece / 2 Comments

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

Systems & pathology, & mental health

/ Sarah K Reece / Leave a comment

I’m doing a lot of thinking about these things. Starting up a not for profit like the DI throws you into this world of systems, policy, organisations. Small orgs like ours are often friendship based, very informal, sitting around dining tables. They happen in homes, spare rooms, basements, the local pub. They are relational. People come and go as relationships and life circumstances change. There’s a flexibility and vagueness of roles that is closer to our family structures. People do stuff, they harangue each other about the stuff they’re doing or not doing, they gravitate to roles they like and are most skilled at. Those with the least popularity or power do the jobs no one else likes. Success – and money – often transforms this process. What was a community or a loose organisation becomes a corporation. Every part of the process is systemised. Roles are defined and assigned by management. People rise through a hierarchy to better paid and more respected jobs until they reach the limit of their skills, or their position of incompetence. Relationships are controlled by the organisation and often arrange themselves in a class system where people are only permitted to befriend those in their own pay grade, rather than those above or below their position, and often not the clients, at least within the ‘helping people’ professions.

There’s upsides to the corporate structure. Systems can be highly useful. Little beats the sheer efficiency of a good system. Sound emergency response systems save lives. The efficient distribution of aid in the wake of disasters are often a reflection upon the quality of the system in place to anticipate and manage such needs. Fairness is another benefit, where resources are allocated and people are supported according to need rather than who they know. A third benefit can be transparency – systems are often far easier to examine and assess than are loose collections of relationships in communities. When you’re asking a question about what works and why, or if a group is efficient or fair, systems where everyone operates the same way are far easier to explore.

Where we hit problems are when we implement the wrong systems for the situation, where a system based response is inappropriate and a poor fit to the situation, or when the systems have been constructed on the basis of values or assumptions that cause problems.

There’s a lot of talk in mental health about ‘the system’ and the flaws in it. Often such talk is rapidly derailed into suggestions about why it is so flawed, and who’s fault that is. Our entire psychological services, community sector, and to some extent, our non-clinical support services such as churches, support groups and so on, are all based around systems. The process is often highly mechanistic in that each member or employee, functions as a cog in a machine. If the cog breaks or goes away, you replace it with another cog. Cogs are interchangeable. Cogs have limited control over their roles and tasks. They are moved around and assigned projects by management, who are also cogs. There are assumptions about power and safety that drive common practices such as professional distance. Relationships are either ignored or forced through team-building exercises. These kinds of systems tend to naturally degrade over time into highly complex bureaucratic processes. They consume a lot of resources to function. They often become inflexible and highly inefficient at taking up new technologies, approaches, or research. Communities that are successful at raising money and awareness tend to evolve into organisations, and organisations tend to evolve (I would argue degrade) into corporations with all the legal and social responsibilities and inherited ideas that come with that.

I find the corporate structure deeply unpalatable for many reasons. The astonishing inefficiency of resources is a big one. Where three people in a room will often constantly be seeking for cost effective methods to reach their goals, corporations routinely completely overlook new technologies or methods. They gear towards stability. Having figured out a way to operate, they stick with it. They keep paying massive phone bills despite advances in VOIP technology. They print masses of paperwork needlessly. They attach money to respect and create expensive norms, such as putting visiting guests up in hotels, where the small community would house them in spare bedrooms. They consume. Over time the organisational goals become less about their aims or mission statement, and more about self preservation.

Another problematic aspect of the corporate structure is that it is often very controlling and hierarchical. People at the top tell everyone else what their job is, the best way to do it, how they should dress, interact, and function. We tear down divisive and dehumanising class structures in other aspects of our societies, and rebuild them within corporations. When groups of people are clustered together like this, we often see a loss of diversity, and a loss of individuality. With those losses, other losses are predictable – such as innovation. We also see huge challenges in the area of ethics.

The Neuremberg defence, I was just following orders, nauseates us. We tend to expect and demand that all people are responsible for their individual actions, and answer to a moral as well as a legal code. This is a whole lot more problematic than it sounds at first. Corporations tend to subsume the identity of those involved with them, they set codes of dress and conduct. People are told not only what they are allowed to say, but instructed on what they must believe or value. Obedience is insufficient. An employee who obeys a rule – such as confidentiality, or equal access for GLBTIQ people, or to deny assistance to a person in distress – but who clearly does not believe in this rule is unlikely to remain for long unless a shortage of other workers in that region keeps their position safe. No individual within a corporation is permitted independent moral action, but must instead come into line with the policies and procedures of the organisation or risk being fired. However, no member of the corporation is assigned responsibility for assessing the morality of the organisation as a whole. It is assumed that ethics, and the translation of values into policies (which is a hell of a lot trickier than it sounds) will be key parts of the processes of those few who have the responsibility for writing them.

So we have a diffusion of responsibility for ethics, between a small handful of people in managerial and board roles, enforced across an entire organisation. Many of those people arrive in their positions having first spent years working as regular members of an organisation where their opinions about ethics were specifically prohibited from their work life. Employees in the mental health sector, for instance, are routinely forced into the bystander role where they must watch harm being done, or help not being offered, to someone in need. Sometimes they are forced to be the person who does the harm or withholds the help in order to keep their jobs. Organisations who are fortunate to have highly ethical, insightful, reflective people with excellent management skills and a deep understanding of the complex relationship between values and policy in the management and board will tend towards better practices as a whole. Those who lack either the will or the capacity to create highly ethical practices will not. Groups have a natural tipping point at which the number of people who care – or do not care – about something becomes the dominant organisational culture. Authority also dramatically influences our capacity to think or act otherwise, so the influence of the beliefs of those in such positions upon the workforce as a whole can be significant. The alternative is a fractured organisational culture where the management and workers operate semi independently of each other in a kind of chronic low grade class war.

This adds up to a training ground for management that starts by spending years employed not being allowed to consider ethics in their work life, and ends in positions of high responsibility, little or no attention to work relationships, and the requirement to ensure that every member of the organisation adheres to the policies and procedures to protect everyone from risks of litigation, bad press, and loss of funding. Corporations naturally decay into behaviour that in individuals we call psychopathic and narcissistic, unless a lot of effort goes into protecting them from that outcome. They often operate in dysfunctional ways. When a system subsumes individual identities behind roles, and replaces relationships with mechanical structures (cogs in a machine), they also tend to replace values with rules, and to confuse obedience to these rules as being the same thing as ethical behaviour and as loyalty to the system or organisation as a whole. The idea that one can be loyal and devoted to the organisational aims but have sidedness of opinion about the ethics of how those aims are meet is not one most corporate structures entertain.

This cog in a machine structure is extremely problematic in mental health because relationships are so key to support. It’s not enough to see a social worker every month, is far better if it’s the same social worker we’ve built trust with. Case notes do not replace a history and connection between two people. ‘Cogs’ are dehumanised by this model, and tend to be further alienated from the people they are supposed to be ‘fixing’ and moving on as quickly and cheaply as possible without making friends with them. Friendships are the primary model for support in our culture and yet are infrequent or expressly forbidden within corporate structure and mental health especially.

There’s tremendous tensions between the organisation and the individual. If we think of corporations as multiples, where the corporation is a person, and the people that make it up are parts, these parts often lack voice, power, validation, and the right to be diverse. Dictated to by a dominant part or groups of parts, the rest are hostages who are managed or exploited. The corporation as a whole had a name and logo (face) presented to the world, and the parts must be brought into line with, present consistently the same, and hide diversity or division. I personally do not function at all well in corporate structures for precisely this reason: my system does not cope with a model of authority so completely at odds with our own, and we not accept the idea that ethical behaviour is the responsibility of someone else in the workplace.

If we think of a corporation as a tribe, being a member of that tribe carries a very high price in terms of individual identity and freedom. Perhaps this is simply more difficult to see in corporations because we are accustomed to them and accept them as normal, in the same way that we accept as normal that most people hate their job, find their boss very stressful, and hate their bodies. We in the west tend to be highly sensitive to incursions on the rights of individuals in other cultures, and yet oddly blind to the same dynamics in our own. One of the simplest and most obvious examples is that of our widespread exclusion of people with disabilities from the workforce for the simplest of reasons – lack of access, and our inability to work predictable hours when illness interferes. Tribal cultures are frequently organised on more flexible principles, where those who work do so, and those who are sick or injured contribute what they can, as they can. This simple conflict of structure in what we have created in our highly mechanical post-industrialist society, and the needs of those of us with sickness or disability underlies a massive problem of social justice, inclusion, welfare, discrimination, and invisibility. It is one more aspect of the loss of diversity.

So, what are our options? How do we navigate this? I would argue that systems have value. Patterns and routines can save us from being paralysed by the requirement to discuss and examine every action at length. They help us to function in groups, to take care of vulnerable people, to act quickly. Maybe a lot of our issues are not with having systems, but with having mechanical systems. I often draw inspiration from ecosystems when I’m trying to better support a family or group. The ideal is a balance of flow of energy, no one at the bottom, exhausted and neglected, no one at the top, consuming without giving back. Everyone connected but separate, giving and receiving. There’s many ‘natural systems’ I’ve no interest in replicating, such as the dynamics of a termite mound. But there are principles of connection and freedom that may help to inform systems that are a better fit for the people within them and the people they serve. Here’s a few thoughts about these kinds of systems via Communities as Living Systems (how nature can inspire fresh perspectives on complex problems) | joannahubbard.

  • Living systems experiment-they don’t seek a perfect solution, just a workable solution.
  • Within a living system something is always working.
  • Nature seeks diversity – new connections open up new possibilities for the system’s survival.
  • A living system cannot be steered or controlled – only teased, nudged and titillated.

We’ve done so much talking in mental health about how destructive the system can be, not only to clients/patients, but often to those compassionate people trying to work within them. We often treat relationships and systems as being at opposite ends of a spectrum, and yet our culture organises relationships into family structures and expects the protection of vulnerable members. On one level, families and friendship networks operate as a socialist sub-set within a capitalist culture. The wheels are oiled by a massive number of volunteers and unofficial support between people. This is still a form of system, a pattern of organising a community. (It’s also one that doesn’t fit everyone, as minorities such as the GLBTIQ community seek access to legal and social recognition for their relationships) We cannot build a perfect system or utopia, but we can build something more in line with the needs people are communicating and what we are learning helps people to recover from crises and distress, such as relationships.

Systems are not inherently destructive, nor are they inherently devoid of ‘natural’ relationships. They can be extraordinarily complex and difficult to set up, and often have unintended outcomes. They can fail in a myriad of ways, and funding success can destroy their capacity to function well just as spectacularly as financial ruin. Systems must operate according to (or at least, interact with, even if intending to disregard) the legal requirements of the countries they are set up within. This can necessitate a high level of creativity, innovation, and courage, because the easiest path is simply to recreate the structures we are familiar with, however appalling. Great intentions are insufficient – the mental health system has undergone many reforms and each was driven by people with excellent intentions. The asylums from which we are rescuing people were built by those distraught by the fate of madmen who were starving in the streets. I don’t have an answer or a solution. What I do have is some experiences about what does and doesn’t work – in my own life, and in the groups I have created. I have some values about human rights and dignity. I have some hope that we can – all of us who are wrestling with this complex challenge – creativity engage and inspire each other to create organic, living systems that change and grow with us and with our cultures. I think some key aspects to this in mental health are:

  • Transparency
  • Freedom
  • Mutual Relationships

How these translates into systems and policies is something many people are exploring. Some groups are trying to set up suicide services that are ‘self check in’ to remove the barrier of having to prove you need help before you can access it. Other countries are running mental health services on the principles of Open Dialogue where patients are part of every conversation and always have access to their own records. None of us are going to come up with a single, perfect answer. A big part of what we need to move forwards is safe, respectful places to have conversations and share ideas, so that we can pool our experiences and wisdom and create something better.

Hypnotherapy and Dissociation

/ Sarah K Reece / Leave a comment

I see myself, standing in the forest of Princess Mononoke. I’m robed, head down, hands outstretched, holding a wide, shallow basin which holds dark red blood. I’m offering it.

In my mind, silently, I say the words over and over “this is not something you’re taking, this is something I’m giving.” It’s done with the full awareness of pain and distress, of past trauma. They are not gone or silent, they are present, and yet it is still done. It is a choice, it is a cost in pursuit of something of value, an exchange, a sacrifice. These are things I understand.

About 15 years ago a traumatic incident triggered a sudden phobia of blood tests and drips for me. I’ve battled it mostly unsuccessfully since then, seen trauma specialists, dissociation specialists, and anxiety specialists. Nothing much has worked. Sometimes it’s been so bad I can’t sleep the night before a test. My hands sweat, I tremble, go white, dizzy, weak, and vomit. My head explodes with distress, people screaming and crying, begging us to get away and get the nurse away from us.

This week we went off for a session of hypnotherapy with a woman who’s particular interest is blood or needle phobias. Of course, we had to do some work to calm her anxiety about working with a multiple, as she was quickly overloaded by the complexity of our situation, and embedded in a ‘dysfunction’ model of multiplicity. We said to her “forget all this, this is just details. We’re still human. We have the same needs and fears.” She said to us “hypnosis is just dissociation by another name”.

She did a session, talking about safety. We switched a lot and had an intense inner conversation, figuring out what the block has been (the parts who are not afraid do not inhabit tender body places such as inner elbows), which part is needed (our night poet who is deeply familiar with ‘strength in vulnerability’), what the challenge was (they live in night, in solitude or under stars, fluorescent lights and a blood clinic are about as far from their territory as we can get), and some work arounds for it (draw on the skills we have in theatre to take over and own a space, dress in their clothes, they don’t have to be present for long, use a character or setting that fits to focus on).

So we did, and it worked. Yesterday was the first blood test I’ve had in 15 years with no trace of phobia or trauma reaction. The shrink didn’t do it to us, or fix us. She came into a space with us, that’s all. It’s the same space our night poet inhabits naturally, it’s the same space we access when we do focusing. In that space, we connected with each other and had a complex conversation that lead to answers. We can do this ourselves. We will start a new journal for focusing. This is powerful. There’s hope in it.

There’s also risk. The phobia has been sustained by many things, including an attempt to prevent self harm. We made a call that stopping self harm was no longer going to be our focus, that it was not the real problem. Pain, loneliness, and self hate were the problem. So the phobia isn’t needed. Other things are in this box we’ve tipped over, like traumatic memories of medical procedures as a child. Like a desire to claim and own our own body. Like fear of and fascination with the medical. Like a history of Endo and Adeno that involves a lot of pain and blood. I don’t know where it will take me, but I’m ready to find out. I don’t want or need this bogeyman, this self induced nightmare to try to protect me anymore. I’ll risk disruption and self harm to be able to actually engage with this territory and make some progress through it. I’m not finished, it’s not over. I’m just beginning.

The Void: dissociation, amnesia, and identity

/ Sarah K Reece / 3 Comments

Dissociative amnesia is not often spoken of. It doesn’t have the fascinating glamour of other forms of dissociation such as ‘multiple personalities’ or fugue states. It seems at times that there’s little to say of the losses of memory, of how frail our sense of the world is when we can’t recall it. It’s subtle but insidious, far more important and powerful than people think.

Some people with multiplicity also have very high levels of amnesia, a form of dissociation in memory. In this case, memories are laid down and stored in the brain, but the dissociation between different parts prevents access to them. So people can live in this surreal twilight world of ‘coming to’ and trying to figure out from context where they are and what has been happening. Life is a bewildering series of changes, something that slips through your hands as fast as you try to grasp it. Other parts live according to their own values, needs, fears, and understanding of the world, and you return to inherit their choices. The world of cause and effect can become brutal when you cannot recall the causes but must live with the consequences. Between skips of memory can pass hours, days, or years. Like Rip Van Winkle, you can wake to find your whole world is unfamiliar.

Other people experience amnesia without multiplicity. Sometimes it gets forgotten that this is very possible. People are told that if they cannot remember great chunks of their day – or their life – that they are probably multiple and other parts must have been living them. It’s actually very common to have amnesia without dissociation in identity, trauma both physical and psychological will often affect our capacity to remember, as can a massive collection of physical illnesses and injuries. Emotion is a key aspect of memory, so dissociation or disconnection in emotions can also affect our capacity to remember. Our ability to remember is also linked to our awareness of the passing of time. Memory is very complex and not particularly well understood.

We’re familiar with the challenges of minor memory loss, the scattered way of life when you’re constantly looking for your shoes, keys, car, phone. It’s not hard to extrapolate that to bigger, but still tangible losses – having found my car at last in the shopping centre car park, I can’t remember where I live. Standing at the checkout desperately trying to remember my PIN number, crying with frustration because I’m 19 but it feels like I have dementia. Trying to fill out welfare forms and having to ask other people what my birth date is. These bigger gaps are like black holes in the world, only in your world. Other people walk over an unbroken path, I fall through, into an emptiness. I float in a void and hope desperately I’ll find the other side of it, pick myself up quickly, dust myself off and keep walking, hoping no one notices my lack of normal functioning.

Other losses can be profound, harder to imagine. People who recall nothing of their lives before the age of 35, except small scraps. People who find that amnesia follows them, at a distance, like a stray dog, eating recall of all memories older than two years previous. People who wake in the morning next to their partner of 20 years and find they don’t recognise them. People who look in the mirror and are bewildered and surprised by who looks back at them. That moment of panic as a stranger approaches you in the street with an easy smile and greets you by name. For some there’s an overwhelming sense of shame, of being damaged and desperately trying to pass for human. For others the loss takes even the grief of loss, there’s a shrug, or a little wistfulness, or even relief. For some, behind the shield of amnesia, dreams and nightmares and all the things they once felt deeply about lurk in their shadows, haunt their sleep, beat against glass walls in their mind, evoking terror.

Without memory, it is difficult to have a stable sense of self. State-dependent memory cuts off a sense of connection to other parts. Each part has their own memories of life and draws their own conclusions based only on their own experiences. Mood dependent memory is the way we recall with ease our happiest moments when happy, and drown in all our saddest when sad. For people in the grip of intense, flooded emotions, such as some who are given the diagnosis of Borderline Personality Disorder, their whole lives and sense of self changes with each feeling. We sparkle when happy, and our whole world is beautiful! We are generous, kind, loving, full of good humour and good will. We bathe in the milk of human kindness, nothing is too big to forgive, too much to ask. When sad, the world is black, bleak, dark, terrifying, choked with misery, full of bad omens and evil portends. We radiate despair and flood everyone near them. We are preoccupied, desperate, overwhelmed by a sense of doom, like prophets who understand the world is ending and shake our warnings at people too blind to stop their partying and take up the ashes and sackcloth. When threatened we are sharp toothed, short of temper, we jump at shadows and see danger everywhere. We bite hands that come too close and nurse the aching wounds of all the wrongs ever done to us. We see the world as violent, unpredictable, deceptive. We look for the trick in every gesture, the hidden meaning in every word. We live with our teeth bared and bite before we’re bitten.

There are a thousand shades of emotion that people don’t even consider, like shades of colours. We are swept from heights to valleys, through quiet contemplation, deep sorrow, burning rage, cheerful spring mornings, restless wild moods, agonising pain, mischievous playfulness. When these states are split off from each other, people’s sense of self changes with each of them. Our sense of the world completely changes, our values and goals change, our expectations of the future changes, our approaches to our relationships change. The thread of consciousness that gives us our sense of stable self is snapped and chopped into bits. What has the potential to be a deeply lived, vivid experience of life becomes fractured, tormenting, and without growth.

For people with parts, fractures along these lines are common – one part will remember all things wonderful in life, another all things painful. When switching and trying to understand the self, multiples get lost in the many versions of self that leave evidence in their lives, the many handwritings in their journals. As a child I sometimes asked other people to describe me, feeling devoid of clarity about myself and seeking to use their eyes as a mirror. There’s an empty feeling beneath shattered memory that can make people feel like they don’t exist. Switching can be like forever walking into a room at the moment someone else walks out.

I once watched a documentary about Clive Wearing, who suffers from chronic severe amnesia due to a virus that damaged his brain. He has almost no recollection of his past (although he has what is called procedural memory, that is he can still do things he once learned to do, such as walk, dress himself, and play music). Clive cannot hold onto to new memories for longer than about 30 seconds. He lives entirely in the moment. He has a diary that moves me deeply. Each previous entry he crosses out, as he cannot recall having written it. Each new entry is achingly similar.

8:31 AM: Now I am really, completely awake.
9:06 AM: Now I am perfectly, overwhelmingly awake.
9:34 AM: Now I am superlatively, actually awake.

There’s an agony here, an awareness of loss and a claiming of life that turns out to be without permanence or meaning. It’s deeply painful to see his distress and be unable to knit back together the damaged areas of brain that leave him in the void. The process is familiar to me, I recognise echoes of the same voids in myself and others.

For those of us with multiplicity, even when co-conscious, the emotional distance of watching but not living all our lives can create subtle breaks in our sense of self. Disconnection in emotion can fragment our ability to emotionally process our lives. Switching can be our own version of suddenly feeling awake. We sweep aside all the knowledge of other parts, sometimes even of our own previous memories, with this sudden conviction that now, I am truly awake. That now, I am really alive. This time, I understand. That this time, I’ll make it work. We do the same things, with the same tools, from the same values, backed by the same seeping aside of our history, and are horrified, surprised, and devastated when we get the same results. We cut ourselves off from our own wisdom, learn nothing from our history, disregard all previous insights. We make abrupt, unsustainable life changes, that change only the names and places, but repeat the same crisis dynamics over and over. When we are briefly aware of this sense of being trapped in a cycle, we feel so helpless and ashamed that it’s a relief to let amnesia or switching sweep it all aside. It’s like having an internal reset button, we go back to the start of the maze and go looking for the cheese all over again, often with the support of people around us and mental health staff who are pleased we’ve stopped being paralysed by our awareness of our futile cycles and are tackling our lives with vim again.

Health and recovery is sometimes sold to us as stopping this process. Limiting the extremes, preventing the switching, shutting down the states. A single part is chosen to be the ‘real’ one, a single emotional state or small collection of them are selected as the ideal, calmest and most rational. All the knowledge in the rest is discarded, all the wildness that gives life deeper mythic meaning, the wrestling with angels and demons, the being moved by things we can’t name are suppressed instead of connected. The goal becomes staying still instead of learning how to dance through them. Life becomes staid, the suppressed grow wilder and stronger, we find ourselves fighting not only with our weaknesses but also our strengths. We dissociate more and more from ourselves and our experience of life.

These processes are not unique to multiples. We all use dissociation to contain memories and feelings, to compartmentalise our worlds so that we can function. Not enough dissociation, being unable to contain emotions and memories can be just as destructive. It can be very difficult for any of us to step back and see the whole, to watch our own patterns and honour our history. We are all partly dependant on the stories we’ve told through which we understand ourselves and the world, and the perspectives of others. Sometimes they help, something they make us blind or tell stories that do us harm. Step back too far and we become numbed observers. Remain forever utterly in the moment, and we fall into the void. In that place, we run to anything that makes us feel better, calmer, safer, no matter how crazy. We self destruct with passionate, spectacular indifference. We search for a sense of self that the search itself destroys. The experience of the void can induce a sense of absolute panic, a desperate, frantic need to DO something, anything, to feel like you exist. Even blood, agony, the fireworks from your whole world being destroyed can feel better than the void.

For me, my journals – and now this blog, are the trail of breadcrumbs I leave for myself to help me see my selves. I write, and then I read, and re-read, seeing my selves through different eyes, charting my life. I find causes for effects. I learn about those people who have the most profound impact upon my life, but whom I have never really met – my other parts, the rest of ‘Sarah’. I am startled by the complexity of life, all the things I do not see that they do, the vast spectrum of colours I cannot perceive, of feelings I know only as words. There’s a sense of being blind, but learning life and self by its feeling in my hands, its taste in my mouth. Sometimes someone comes out who is missing so many threads of information, so much of what we have learned and how we have changed. Sharing our history connects them back to us, to the present moment, to all the gains and losses of our life.

I reconnect the thread of self by honouring that I am alive now, and that I have always been alive. All the parts are real, all the emotions are meaningful, all the experiences are important. I look for the common ground between all the states and parts, and I also learn to celebrate such wildly diverse ways of experiencing the world. I find the things that stay the same no matter what – a fear, a value, a need, a tiny chip of identity. I look for ways to carry them with me through all the changes, I notice the way that feelings or switching changes a value like kindness, the way different light sources make a gemstone look like it’s a different colour. Ideas are refined. A sense of self is not so much found as created. The void remains, but it no longer consumes everything, and my life is no longer spend running from it in fear and back to it in need.

Multiplicity and Love

/ Sarah K Reece / 2 Comments

How do you get engaged when there’s more than one of you?

There’s a million different ways. I’ve written before about multiplicity and relationships, and also about how switching affects relationships. Some people don’t know they have multiplicity when they enter into long term relationships. Some have a single part bond – one part is engaged, the others may have reactions ranging from excitement to indifference to horror, or be entirely unaware this is happening until they come back out maybe months or years later. Some may have group bonds where many parts have relationships of various kinds with the other person.

I’ve done romantic relationships before I knew about parts. They were tremendously challenging. Things would be going brilliantly and suddenly completely derail without warning – what I now know was being caused by different parts switching and needing completely different things. Child parts would be distraught at being kissed on the mouth, wild parts would need to run in the night, the poets needed ink and solitude and contemplation and freedom to be melancholy, the researcher craves new information and sharp minds to discuss with. The experience for the partner is one of ‘consistent inconsistency’. Some days I drink my tea this way and some that. Some days I love licorice and some days hate it. Some days I sink into a hug and some days flinch. Part based roles make it challenging to engage relationship boundaries – this part remembers all the good things, that part the bad. When the former part is out they are happy, easy to get along with, generous, and malleable. When the latter is out, they are frustrated, suspicious, and desperate to repair whatever trust has been broken or boundaries violated. Hence the bounce between ‘everything is awesome’ and ‘everything is broken’.

The real challenge was in discovering that they are both right but also both a little unbalanced because of the skewed information they have to work with. For years we thought my part who recalls the painful and frightening things was simply us being ‘depressed’, and that we should ignore everything we think and feel during those times as merely being the product of mental illness and low mood. Turns out she actually had some really important points, and that without her perspective we’re really vulnerable to exploitation and abuse. On the other hand, most of her proposed solutions were drastic and destructive. We had to take her input and work on something more useful to do with it.

I’ve also tried my hand at romance once I knew about my multiplicity but wasn’t ready to share it. That was challenging in a whole different way. Concealing switching was easy because that’s how my system usually works anyway, but trying to get a partner not to take it personally or think they’d done something wrong when I needed things to be platonic for child parts, for example, was really hard for me. I found that I started to feel like a sleeper agent with a cover story. There were real feelings and people and lives around me, but a central secret about who I was disconnected me, and the constant need to conceal and the terror of being outed caused me tremendous distress.

I’ve been in romances with multiples as well as singles, guys as well as girls. They are wildly different in some ways, but I wouldn’t describe any of them as fundamentally ‘easier’, just different. I’ve found that we gravitate towards people who have access to a wide range of ‘sides of themselves’ if they’re not actually multiple. That is, what we usually mean when we talk about parts of ourselves; ‘part of me wants to study tonight, part of me wants to go hang out with my friends’. People who have found one way of being in the world and stick with it through all circumstances tend to confuse and sadden me. I can often ‘feel’ their buried parts or cut off emotions, and struggle not to interact with those sides of them. I can find myself impatiently waiting for them to reveal more of themselves – particularly when their approach to life is clearly not working for them – why don’t you switch already? Sometimes I feel like the lucky one and people with so little access to other perspectives and ways of being in the world feel like the ones who need help.

That’s not to say that these other ways can’t work! At one point I was in a relationship, as an undiagnosed multiple, with another undiagnosed multiple. When it worked it was beautiful, a synchronicity, us against the world, at last someone who functioned the way I did, needed the things I needed, saw the world the way I saw it. When it didn’t work it was agony. People find themselves in very different situations and navigate their relationships in different ways. There’s no right or wrong answer here, just different ones, and the challenge to love without harming or being harmed.

Rose is the first person I’ve been involved with as an ‘out’ multiple. I vastly prefer it! It means that the night one of my deep, very wounded parts came out and had a panic attack when Rose touched her made sense. I could explain what happened. Rose could adapt. Rose now recognises almost all of my system by sight – how we talk, walk, hold our body, the colour of our eyes. She knows our individual personal names. Even when she can’t tell who it is, she can tell the basics that she needs to know – adult/teen/child, male/female/other, romantic/platonic, reassured by touch/traumatised by touch. With that information we can both navigate the switching and build and maintain relationships between everyone. She’s met most of us who switch out, and with most has formed a strong relationship of some kind. In our case, there’s several who are romantically involved with her, then there are friends, ones who relate more as sisters, ones who only get involved occasionally, and so on. We’ve proposed as a group, and so we didn’t ask her to marry us, but to be our family, because what we’re asking for and offering is different for each of us.

There’s challenges! Everyone doesn’t always get along. Parts have different needs. It can be easy to fall into a carer/caree dynamic as that is how we are seen in the mental health world. There’s the added pressure of being treated as ‘trailblazers’ who are proving that relationships with multiple are (or are not) possible. Rather similar to the way that our relationship is seen as representative of all lesbian relationships in friendship or family circles who haven’t been directly exposed to any others. There’s the challenge of embracing Rose without writing her into my system – letting my child parts love her but not treat her as a parent (that’s our role), not catching her up in the inevitable rescue fantasies that most of us who have at some point been deeply hurt find written into our approach to the world, not seeing her as others who have hurt us when things aren’t going well.

There’s also upsides. Like the time she asks for the part who handles physical aggression when we’re walking at night and group of guys is watching us in a scary manner… and I can say to her – already here love, don’t worry, I’ve got your back. It’s late night video games with my kids, it’s climbing trees with the wild ones, it’s sharing stories of homelessness with the survivors, and having huge conversations about peer work and youth work and social work and community and mental health and power and families. It’s Rose having someone who gets her experiences with flashbacks, nightmares, body shame, and self loathing… and can make her laugh about them. It’s about us having the stamina to switch out the tired ones and make it through a week of Rose in hospital, also keeping the pets alive, easing her trauma reactions so she doesn’t wind up sectioned as well, being there through severe pain, and putting all our needs on hold until it’s over. It’s about the contradictions that make up all people, writ large; the edible glitter on cupcakes and the goth nightclubs, the gardener and the naked body painter in a psychotic whirl, the person who takes lizards off the road and nurses orphaned kittens and the one who burns with rage when Rose is being hurt.

As I keep saying, multiplicity is normal human function, writ large. It’s a dance, between adult and child, light and dark, male and female, the apparently functional and the apparently wounded, the ones who fit in and the ones who don’t fit anywhere. We dance together, sometimes she needs me to make her laugh and my cheeky imp turns up and turns the house upside down. Sometimes I need her to hold me and tell me “don’t worry love, everyone gets to see your charismatic ones. I’m privileged to know the ones who don’t stand up in front of crowds”.

There’s days she cares for me but she’s not my carer. There’s times she feels deep empathy for me, but she’s not with me because she feels sorry for me. There’s needs she has that I’m good at meeting, but we’re not together to exploit my capacity. There’s ways in which we’re similar and also big differences. Navigating multiplicity is a key aspect of every day and every part of our relationship, and in another sense, it’s irrelevant. Once you get used to kids turning up in the lolly aisle at the supermarket and know not to be scared and wander around hand in hand talking about the virtues of kinder surprises vs gummi bears, knowing that I’ll switch back to an adult in time to drive home, it’s just not that big a deal. Once you’ve learned what helps in a bad night, then swinging into action to rub my back and listen empathetically as some wounded soul howls or flashbacks or recounts a nightmare is just part of our life. Trauma is part of our world, some times a big part to manage, sometimes so small it’s barely there, but it’s just something to live with. It’s not a source of shame or fighting or horror, we make plans around it just like we would if I was still in a wheelchair. We don’t compete about who is in the most pain, we don’t treat my experiences or my multiplicity as worse or more important or more amazing than Rose’s experiences of trauma and loss and triumph. She is neither healthier, nor sicker, nor luckier, nor less creative, than we are.

We’re both just people, frail humans, with capacity for light and dark, with frustrating and enduring weaknesses, with amazing strengths. We work to keep our power in balance, to love each other, to own our own stuff, and to make a great life together. Just like anyone else. Love is love.

New resources

/ Sarah K Reece / 2 Comments

Another day working on my free community resources. I’m still crook but able to get things done, albeit slowly. Very focused on the work today but also very dissociative and spacey. Hoping tomorrow will be easier.

Today I have

I would love to hear your thoughts. The DI site is almost to the point where I’m happy with it and ready to move on and properly flesh out the Hearing Voices site, then I can get on to the Homeless Care site and back to my own Business development. Tired! But happy with the progress.

My new brochure!

/ Sarah K Reece / 2 Comments

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First print run of my brochures advertising a talk I give! You can read it in full on my business website sarahkreece.com.au. Very excited. I was sick all night and spent the morning in bed, but wound up having a really nice day. Lunch with a friend, tremendously excited about my brochure, and returned all my overdue library books. 🙂 Very successful day. 🙂

Prodromal

/ Sarah K Reece / Leave a comment

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. 😉

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.

Phobias ain’t phobias hey

/ Sarah K Reece / Leave a comment

Post op pain is a bitch. The ENT was kind enough to warn me that the procedures I’ve had done tend do two pain spikes, around days 3 and 7. Forwarned is forearmed, it helps a lot if you know to expect it and aren’t panicking that something has gone wrong. Mornings and late night are my worst times, which is usually the case for any of my conditions. Peak functioning and lowest pain is afternoons, best time for visitors, appointments, eating, and uncomfortable procedures. I’m have to drown myself on a regular basis with salt gargles, sinus rinses, and sinus sprays. This is the ickiest post op I’ve ever done, I spit blood and drip pus and generally ooze. It’s truly delightful.

I’m concentrating on staying out of trauma memories as much as I can. The difference when they’re triggered is huge, my whole perspective shifts and I feel physical pain more keenly through the lens of helpless misery. I also struggle with body memories such as feeling drips and needle pain that isn’t current, I radiate distress so people are stressed and alarmed around me, and I can’t access most of my skills to manage the situation because I’m so overwhelmed by emotional pain. Humour is currently my ally! Nothing breaks the state more effectively at the moment. As I deliberately look for something absurd to focus on, I can feel myself back swimming away from a dark vortex, and color returns to the world. I don’t understand it all yet but I’m trying to pay attention and not the details so I can unpick it later because there’s something very powerful in this.

My capacity to manage the needle phobia has run out for now, sadly. This op was my first time using fentonil for pain relief, and I should be getting as blood test done to see how my liver coped with it. Unfortunately the hospital needed my bed and moved me on without follow up, so yesterday Rose took me to my GP clinic. I can be really difficult to draw blood from, phobia aside my veins are good at hiding. After several harrowing minutes on each arm the GP gave up and I’ll have to drink lots and try again on Monday. Unfortunately this means we don’t know how my liver is going so taking any codine is an unknown risk. Hence high pain levels. The techniques I used to manage the drips in hospital just didn’t have traction, like they hadn’t recharged. My hands dripped with sweat and I shook. But it was brief (ish) and I recovered pretty quickly.

When I’m back on my feet I’m going to a hypnotherapist to try and make some sense of this. There’s a lot of needles in my future! On the plus side, the progress I have made will give up somewhere to start I think. I had a really, really bad reaction to a blood test as month ago and clicked that I don’t think I do have a true phobia, rather blood tests and needles seem to trigger a massive trauma reaction complete with flashbacks. That might explain why the phobia approaches haven’t been working for me. In hospital I used visualisations based on attachment needs to great effect, and found that whenever pain spiked I could concentrate and determine what were current sensations and what were memories to be brushed away.

Anyway. So yeah, stuff. I’m taking notes and I’ll follow up later. For now I’m distracting myself with a Buffy marathon and stopping my jaw seizing by chewing licorice bullets. Tonks is being a crazy moth hunter and stalking the unit with gusto. Zoe is a total couch potato who will snuggle with any discarded clothes, socks, or, if she can find him first, my stuffed lion toy. Good company!

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