Peer Work

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

Endo & adeno 2: a hidden cost

/ Sarah K Reece / 3 Comments

I’m not pregnant again. And I’m crook, endo and adeno are knocking me around. We’re still moving house, and Rose has hit major unexpected issues with her job, so we’ve spent the afternoon at Centrelink starting the process for unemployment support in case it doesn’t get sorted out. It’s been a really tough couple of days. If you don’t know what endo and adeno are, see Endometriosis & adenomyosis 1. Trying to get pregnant with these is rough, it’s an extra kick in the teeth each month on top of the sad news we’re not pregnant. Right now I’m pretty fed up.

My experience with these conditions has always been pretty horrific. My first period was at 13 and pretty normal. My second happened to fall in a week that I was away with my school for a major convention. I packed a collection of sanitary items and my two school uniforms, completely unprepared for the pain and haemorrhaging I was about to experience. All my pocket money was spent on buying extra pads from the toilet vending machine. I was drenching to capacity a super heavy size pad every hour. I have a vivid memory of sitting by my window on the fourth floor in the small hours of the night, sobbing, my mattress stacked against one wall to dry after I’d tried to sponge it clean, and the floor between the shower and my bedroom wiped down with wads of toilet paper. I felt in that moment that I was the loneliest person in the world.

My periods were always extremely heavy, particularly in the first few days. I struggled to cope. Embarrassing leaks, constantly going to the toilet, and stains on clothes, bedding, and mattresses were suddenly a constant part of my world. Teachers were often suspicious that I was merely trying to get out class and it wasn’t uncommon to have desperate requests to go to the toilet denied. I carried 15 or more pads with me at all times, just in case. Bullies thought it was amusing to steal these or scatter them around the classroom. In later years, homeless or living alone, they were needed in case I was too sick or broke to buy more in that first miserable week.

The pain was severe and nothing provided much relief. My journals from this time are full of distraught descriptions of feeling that my pelvic bones had been turned to hot lead that was burning in my flesh and running down into my thigh bones, that something was raking a sharp stick across the inside of my rib cage, of intense cramps and contractions that exhausted me. I would spend days huddled around hot water bottles, alone in bed, sobbing, or curled around my gut in the bath, or weeping in the toilets at school or work, learning to dissociate to carry on.

My periods also lasted for much longer than usual, around 14 days a month. Literally half my life was now spent bleeding. I experienced a level of body dysphoria usually described by trans teens enduring puberty as the gender they do not identify with. I felt deeply ashamed of my inability to handle menstruation, unable to connect with, care for, or enjoy my developing body.

The worst of all this was that it was happening in a context that normalised it all. I was seen as a bit of a drama queen. Doctors offered neither information nor sympathy. The chronic pain was made a joke of as a rite of passage I had to learn to cope with better. I was an embarrassment to others when I failed to manage discretely. A conservative school and home environment exposed me to constant shaming with inadequate provisions in the way of bins, extra sanitary supplies, or discrete options to clean accidents or hide stains. Menstruation was not to be mentioned as I had a younger brother who was being kept ‘innocent’. Basic supplies such as bins or pads were not kept in the toilet or bathroom at home, despite actually begging for them. As soon as I had a home of my own, I was proud to put both in the bathroom – a woman lives in this house and her needs are not something to be ashamed of!

Unlike other experiences of illness such as the flu, I was not offered much nursing care or emotional support when my pain was related to ‘private matters’. I have the distinct memory of weeping in the toilets at my part time job in child care at 17, dizzy, weak, and in awful pain, but gathering myself to limp back into work, bitterly confused that other girls didn’t seem to find this so hard. Constant invalidation and cultural embarrassment about gynaecological issues meant that endo and adeno isolated me. Deep loneliness, shame, and pain intertwined and each made the whole experience far worse, contributing to self hate, food & body issues, and chronic suicidal feelings.

Painful periods just don’t sound that bad, and that was a huge part of the problem. It wasn’t seen as serious, but this issue alone was enough to cause serious harm to me. At times when pain interrupted sleep and guilt and confusion about puberty and sexual development added to my distress, the beginnings of psychosis can be seen. Nightmares intruded into my blood drenched reality in profoundly disturbing ways. I dreamed of rape, miscarriage, and abortion, of having demons inside me, of clawing babies from my own womb. Waking soaked in blood and knotted with pain blurred nightmare and reality. My usual teariness began to deepen each month into suicidal blackness. I still struggle with profound lows which are partly hormonal and partly basically emotional flashbacks to these awful experiences. I began to believe awful reasons I was suffering, such as punishment for sins, my body hating me, me being evil. People around me treated me as if I was bipolar.

These are the kind of experiences that come to mind when people talk about how mental illnesses would be better treated of they were more visible.

Really?? Ever had facial scars and had to handle the stares before, or needed to use a wheelchair and watched people pull kids away from you as if you’re going to run them over, or, you know, discovered you have blood on the back of your pants and had to walk through the whole shopping centre to get back your your car? Oh, I see, you mean visible, but in a nice, non threatening way that didn’t make people stare, laugh, or treat you weirdly. Good luck with that.

These are horrible, miserable conditions, for many people they cost us deeply. We battle with chronic pain and anaemia, doctors who don’t get it, difficulty accessing treatments, troubles getting support from family and employers, difficulties with our sex life, and fertility challenges. It should be okay to talk about it, easier to get help, and less embarrassing to have to explain regular illness. I shouldn’t have to push back against everyone telling me I’m clearly doing too much when these things knock me out for a week – they’ve little to do with how hard I work or whether I’m taking good care of myself. They definitely shouldn’t be a secret shame that messes up our relationships, mental health, and our lives.

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.

Gifts

/ Sarah K Reece / 3 Comments

People are sending me money through the donate button on this blog, and it’s blowing me away! People I’ve never met, people who have found this a useful resource, who know how many unpaid hours I work and want to say thanks. One came in last night while I was hanging out with friends and I cried. Several times. It’s just incredible to me that people would offer to pay me for something I’m already giving for free. There’s a lot of love out there! This was the message that came with one:

Cheers to hope and the spirit of multiplicity

Hells yes. I’ll drink to that! And write to that! It’s deeply inspiring and a lot of work is happening to figure out my approach to hope and multiplicity and weave it together to form the book I’m working on.

So, I’m rewriting parts of my business. I’ve been trying to turn myself into someone who is comfortable with money and goes and writes grant applications and asks for good money for some resources so I can fund others to be free… but wow it’s so not me, or at least, not yet. I’ve learned to stand my ground and ask for pay in face painting otherwise all my weekends would be free charity work, but in mental health it just feels different. I’ve always wanted to be paid a salary so I can offer resources for free… This model of inviting those who can to pay and support free work for those who can’t seems to be working… and right now I can cope with it. So I’ve started to trial it in other areas.

I’m now offering henna or skin inks for people who are grieving with a ‘pay what you can’ approach. I’m also opening the door to more direct contact. I’ve always been happy for people to email me looking for help (sarah @ di.org.au) and I get back to them as soon as possible. Now I’m arranging phone calls with people who want to talk to someone – not a therapist, counsellor or doctor, just a peer. I’m also arranging catch ups with people looking for contact, for private art tutoring, whatever skills I can share. I’ve been carefully opening these doors these past few weeks, inviting people to pay what they can, if they can, and only if they find it helpful.

I’m anxious about being overwhelmed by how many people are looking for support, or finding myself offering so many free services I don’t have time for paid work, which I just can’t afford to do with a family to think of, but so far… well so far it’s good. And I’m getting to do what I love doing – build my networks, reach out, connect, offer hope.

I shouldn’t be surprised that people can be so generous. I’ve devoted a lot of time to writing and running groups and so on, why would I think other people don’t reach out to support things they believe in? I think my time working in mental health has closed my eyes to the real kindness that can exist between people. I’m glad to have them opened again. You guys are amazing. You are changing my world.

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.

Trans Day of Remembrance

/ Sarah K Reece / Leave a comment

Today was trans day of remembrance, all around people are lighting candles and holding events to remember those trans people who have lost their lives.

You may be trans or have friends or family who are. You may know a little about it or nothing at all. You might understand it intimately or find it deeply strange and unfamiliar. It doesn’t matter, you don’t need an in depth knowledge of gender to get that violence against this community is wrong. Horrifyingly common and deeply wrong.

When trans people are constantly ‘othered’- treated as freaks rather than people, when they’re talked about in the media in a sensational way, when they’re always the serial killer, always the punch line of the joke, when the worst thing in the world that could happen is discovering the person you’re out on a date with is trans, we set the context in which this violence occurs. People are bullied, harassed, beaten. More subtle but just as devastating, finding and keeping employment, safe housing, maintaining connection to family, all can be so much more difficult. Rates of homelessness, mental illness, and suicide are frighteningly high. In healthy, inclusive, safe environments, they’re not! But so many trans people have to live in anything but safe places.

So, be aware. You don’t have to understand a lot if you don’t want to, that’s fine. But notice the sense of threat, fear, and revulsion that underlie the jokes and ridicule… They’re the same things that feed the violence. People are hurt, and every year, people die. Help your spaces; your family, your college, your church, your playgroup, your workspaces, be safer. These people are not victims or freaks. Trans people are highly diverse, just like all people, ranging from angels to scumbags. But no one deserves to be killed for using the ‘wrong’ toilet. We can do better.

Preparing for the death of a child

/ Sarah K Reece / 7 Comments

Rose and I are closer to starting to try for a baby. I’m down to 1/4 of the dose of hormones that keep my endo and adeno under control. We have a wonderful donor on board. I sleep at night cuddled up to a full body length pregnancy pillow and rub oil into my tummy to prepare dry skin for being stretched.

Hope and hopelessness grow in equal measure. “With dreams of a bright future comes also the dread certainty of loss.” You can try to ignore it, stuff it down, run from it, but it will speak to you in nightmares, it will wait for you at 3am, it will shiver in your bones and be a scream that only you can hear, beneath the humming of the world.

So we turn, and sit, and face the unthinkable thing. We are trying for a baby, who may die. Three weeks alive, or 6 months, full term stillborn, early death, accident, terminal illness, disappearance, suicide. To love on this earth is to open your heart to the guarantee of grief. My darling Rose has suffered the loss of six pregnancies. Each deeply desired, dearly loved and hoped for. Each child dreamed of and nurtured with everything that she had. Sometimes love is not enough.

Rose and I have struggled with grief. We’ve had very different needs and approaches and experiences, and this has torn us apart at times. We’ve navigated the loss of friends to suicide and sudden death, the anniversaries of miscarriage, loss of friendships and relationships dear to us. We’re been given many shadowed days to begin to understand each other in grief, to sit with the terror, and start to find our own ways through. We have often grieved alone. Grieving together with a partner or in a family is different. Denied grief, overwhelming grief, grief that shatters lives and tortures the mind is something we’re both familiar with in different ways. We know we’re vulnerable.

Everyone is vulnerable. Our culture often isolates the grieving. We do not speak the names of the dead, we do not know what to say, we visit avidly in the first month and when we’re most needed in the 6th month when the shock has worn off we’ve moved on to other pressing matters. We’ve pathologised much of the process of grief, and presented ideas of joy and sadness as being opposite poles a spectrum rather than separate, legitimate, and overlapping responses to life. Ask anyone who has lost a close friend the same week they gave birth to a child. Ask anyone who has fled an abusive relationship and grieved the loss of their hopes just as intensely as they experienced joy in their freedom.

You cannot ever be really ‘ready’ for loss, because when we think of this idea of being ‘ready’ we picture someone who will be unaffected and unchanged. This is not how grief works, any more than it is how love works. It changes everything in us and in how we see our lives. Some things suddenly become meaningless while others are lit up in the most intense way. You cannot be ‘ready’ when this is what ready means to you. But you can certainly be set up to fall hard. Beliefs such as ‘if god/the universe takes my child away it’s because I was not going to be a good parent to them’ will cause terrible suffering.

The way losses are explained can ease or deepen pain. Rose was once told by a doctor “your body is killing your babies, we don’t know why” which left her distraught and suicidal, with terrible self hate and conflict. Later on, coming across many other explanations for miscarriages, including things like “sometimes there is a problem and the body cannot sustain a pregnancy” or “sometimes babies are not put together right and they die early”, there were other ways to understand what had happened that were not personal and didn’t indicate intent to harm.

Not so long ago my sister’s beloved little cat Kiki died suddenly. It was horrible and a huge loss to her. It brought to mind our families rituals of grief around pets. Whenever a pet or rescued animal dies, we’ve always buried them in our yard. Sometimes wrapped in a cloth or placed in a box, but always in a grave that’s filled with flowers and leaves from the garden.

2014-07-21 15.32.57

Kiki’s grave before burial

We don’t permanently mark the graves, although we do often place rocks or tree stumps over them to keep them undisturbed. The gathering of the flowers has become a very gentle way of returning the bodies to the earth, of connection with the cycles of nature. Pippi and Tessa, my darling rats, were buried under winter lillies. Charlie under autumn leaves and the last of the roses. Kiki under snowdrops. There’s something much gentler about heaping earth onto the plants instead of directly onto a body.

Rituals and other things that mark the loss can be deeply important but also difficult to come up with in the shock of grief. Having a history of them can give us a connection to other losses that’s both painful and encouraging, raising past pain but also reminding us that this is part of life and that there will be new joys.

In early miscarriage there’s often the challenge of not having a body to bury. A ritual such as placing flowers, visiting a tree, lighting a candle, or choosing a date to remember the ones who died can all give a ‘home’ to the grief. In infertility, likewise there is no defining moment or ritual to share. When a previous long term relationship of mine became abusive and broke up, I grieved the children we’d planned together, but I grieved them silently and alone. Grief consumes us with loneliness when we cannot share it, and without a place, date, or name, we don’t have the language to.

People have found ways to work with this. I named the child I’d been planning for and wrote them poems. I lit candles for them when I felt them near and the grief was strong. Rose and I are collecting two lists of baby names, one for living children, and one, pretty but impractical, for any that die. I’ve found an Australian Not-for-Profit called Heartfelt who provide cameras and other services to families who’ve had a stillborn or terminally ill infant. I’ve come across other unconventional ways to mark loss such as this photoshoot of a wedding prevented by death of the groom to be. I’ve read about death and loss and grief, and watched heartbreaking documentaries such as Losing Layla and the follow up Regarding Raphael. I’ve come across instructions on arranging the funeral for a baby, and how to get a certificate acknowledging the loss of an early pregnancy. I’ve found a local funeral company who are creative and flexible and offer home funerals, The Natural Funeral Company.

We’re still not ready. It’s not possible to be ready. But it is very possible to be in denial, under-resourced, inexperienced, and paralysed by fear. That, I’m determined not to be. Grief can destroy relationships. Rose and I hope to journey together, without regrets, whatever the outcome. We walk into the future, full of hope and fear and love, death in one hand and life in the other.

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.

Endometriosis & adenomyosis 1

/ Sarah K Reece / 6 Comments

“Extensive and severe” are not the words you want to hear when a doctor gives you a new diagnosis. Frankly, I personally feel that I have reached my quota for diagnoses, and that if anyone wants to give me a new one, they should have to trade in an existing one. Pick a card, any card… Sigh. So, I’ve been having as bunch of tests over the past few months to check up on my fertility. I’ve already been diagnosed with mild endometriosis, and donor assisted conception can be wearying for both families involved so we wanted to do all the checks we could and get any treatments needed before wasting a lot of time trying to conceive if there was a problem. So far a lot of the news has been good; I have healthy ovaries and lots of eggs. A few weeks ago Rose and I received the news that I have severe adenomyosis. It’s a bit hard to process, and I find it harder to share about physical illness and disability than I do about my mental health, so I’ve sat on it for awhile.

On the one hand, having a name for it makes no difference to what I’ve already been living with. On the other there’s a huge weight of sadness and fear. Perversely, there’s also a sense of vindication. I was frequently ignored and had my terrible symptoms downplayed by medical people and others, especially as a young woman. It was devastating and made me feel profoundly alone and overwhelmed.

A crash course in the conditions, not for the super squeamish. The womb has three layers, the outer one is muscle, then there’s a layer of tissue, and lastly the inner layer which is called the endometrium. This is the part that grows and swells up ready for a pregnancy, and then sheds and bleeds every month as a period. A healthy endometrium is essential for a fertilised egg to implant (that means link up to the womb via the umbilical cord) and be nourished and grow. In endometriosis, (endo) little patches of endometrium grow elsewhere in the body. Most commonly they are elsewhere in the pelvis, such as growing on the ovaries, intestines, and other organs. More rarely they are elsewhere in the body such as the lungs. It is very rare, but possible for men to have endo.

Nobody knows for sure how or why these patches occur. They’re like weeds, growing all over the place where they shouldn’t be. The big issue is that they try to function like the endometrium does, every month they swell up and then shed blood. This blood doesn’t drain away the way a period does, so there can be issues with pain and infection, and sometimes they can chew into places such as ligaments or patches of nerve cells. They can cause fibroids and adherence where tissues glue together, such as sticking the ovaries to the pelvic wall, which can cause worse pain. If the affected tissues are delicate areas such as the fallopian tubes, endo can compromise or destroy fertility. It’s also common for the extra blood loss to cause iron deficiencies. Endo is usually diagnosed through a laparoscopy, a surgery where the gut is checked out with cameras through small holes in the skin around the belly.

Treatments for endo are more usually about managing it rather than curing it. There’s a range of options from surgical removal, using hormones such as the Pill to prevent periods and therefore stifle the endo growth, dietary changes and so on. Some people find some approaches way more effective for them than others.

Adenomyosis is similar, in that again it’s the endometrium cells growing where they shouldn’t. With adeno, the endometrium invades the tissues of the womb itself. Pockets of endometrium cells swell and bleed into the tissue. In severe cases, all the womb is affected. It’s swollen and heavy with the pockets of extra cells, there are issues with pain, excessive bleeding, and cramping of the muscle layer. In some cases the adeno prevents the clamping down on blood vessels that supply the womb, causing chronic pain and bleeding problems. With severe blood loss, the body struggles to replenish the supply of red blood cells and severe anaemia can result. There’s only currently two ways to diagnose adeno: one is performing a hysterectomy, that is, taking out the womb, and then examining it. This is obviously not appropriate for young people or those hoping to have a child. The other is through an MRI scan, which is not quite as conclusive, but gives a lot more information than other scans such as ultrasound.

It’s only been fairly recently that adeno had started to be diagnosed, so not very much is known about it and sources of information are conflicting. It may increase failure rates of implanting embryos, miscarriage, preterm labour and other fertility challenges. Treatments are very limited, in some cases surgical removal, or hormone blocking to shrink the growth – sadly this only has a very temporary effect. Three months of hormone blocking will provide about three months of adeno-free cycles.

Both endo and adeno usually respond really well to pregnancy, and it used to be common for daft doctors to suggest pregnancy as a management tool. This is partly how the hormones help -they mimic pregnancy in the body and when taken continuously (without sugar pill breaks for ‘periods’) they suppress the growth of each. Both endo and adeno can be odd in that how severe they are and how bad the symptoms are don’t always line up. Some people with severe endo have few or no symptoms while others have mild endo but suffer terribly. The location of the endo may have something to do with this – for example endo that chews into areas with a lot of nerves may cause a lot more pain than endo in areas without many nerves. Some people have awful periods and problems with pain and no clear cause can be found, which can make figuring out a treatment incredibly difficult.

So, we have no way of knowing how the adeno may impact our baby plans. I’m having a lot of trouble with experiences of severe depression when we make even minor changes to my dose of hormone to manage these conditions, so at this stage we’re avoiding the hormone blocking treatment because I think my head might fall off or spontaneously combust. We’re tailoring my dose down carefully, hopefully in a couple of weeks I’ll be completely off the pill and ready for my first cycle! I’m taking iron supplements already as the severe bleeding leaves me badly anaemic, which is not good for me and particularly not good for a developing baby. We’ve also made the call that my efforts to be restored to a ‘natural’ cycle at some point are pointless – when I’m not trying to get pregnant I’ll be using hormones to keep these in check. The longer I’m off the pill the worse the symptoms get, so we’re hoping for a 6 month try at pregnancy then we’ll re-evaluate. We’ll be tracking iron levels pretty closely and if I’m lucky I’ll get pregnant quickly before the adeno makes it impossible to work. If I’m very lucky I’ll also have a good pregnancy! Lots of unknowns, but a little more information than we had before. And certainly all worth it for the chance at being a Mum.

Drawing class – maize

/ Sarah K Reece / Leave a comment

Rose and I are both sick with a tummy flu, and serious case of the doldrums. Siiiiiiiigh. I’m finding being sick so depressing it’s hard to breathe. I’ve had a bad headache for three days now. Or one month, it’s all blurring in together with sinus infections and surgery. I saw an ENT at the hospital the other day, he’s happy with the surgery and said everything is healing well. He also said I shouldn’t still be having facial pain and should see a neurologist. He was a bit of a dismissive ass, to tell the truth. Everytime I hear about how people with mental illnesses would be so much better off if they were treated the same as people with physical illnesses, I kind of want to laugh, in a hysterical, jaded, painful, coughing-up-a-little-blood kind of way…

I don’t really know what to do with that. I know I have issues with chronic tooth infections, and I’ve had basically two years of sinus infection near constantly. I also have issues with TMJD, pain caused by muscle tightness in the jaw. And I’m nearly four weeks out of surgery. At this point, I think it’s pretty reasonable that I’m still in some pain, and if the surgery healing isn’t causing it, likely one of the diagnoses I already have is. Despite a letter from the jaw specialist, and me reminding every single person I saw about this op, including the damn surgeon himself in the actual theatre, the request to scope my left check while I was under and check if there was infection or just scar tissue showing on my xrays was ignored. So I’m going to have to go all the way back to my dentist again and try to figure out if my root canal has gone bad and infection is eating my jaw, or if nothing is wrong and we leave it alone… Bastards.

In Drawing class, which I think I’m still just possibly attending often enough to maybe pass, we were instructed to make many multi media images of a single item. I chose a dried cob of maize.

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This last one is my favourite. I love inks. (They’re painted on white gesso)