When sanity is lethal and madness has value

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sanity is relative.

It depends on who has who locked in what cage.

-CS Lewis

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

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

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

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

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

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

little spark of madness

Multiplicity and Love

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.

Phobias ain’t phobias hey

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

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

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

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

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

image

Pain, & truth, & holding onto the stories that heal

I don’t much appreciate the hedgehog that’s living in my throat, and whoever sneaks in while I’m sleeping to stuff skewers in my ears and glue in my sinuses is not on my Christmas card list. Ah, post op, that unique combination of pain, boredom, and day TV. I’ve still got laryngitis which fortunately Rose thinks sounds sexy. I’m sure that helps with the regular top up of slushes!

Have an out of sequence blog post I wrote before going in to hospital. I’m not coherent enough to edit so I take little responsibility for the content.

I’ve had some lovely responses to my recent post Fear, grief, & chronic illness, telling me that other people too, don’t always find a positive approach helpful, that letting their pain speak limits its destructiveness, or that hearing my own vulnerability is in some helpful. I so needed to hear that.

I try to keep this blog as real as possible and sometimes that feels like an endless task of painting pictures of myself and the way I see the world, then pulling them down again to paint another one that’s more complex or shows something different… and I feel this suffocating pressure to only show the successes and the positive, or only share the pain after it’s been digested and finished with and turned into something palatable… it feels both incredibly vulnerable and somehow deeply urgent to defy these pressures, like fighting upwards through water to get to air where I can breathe again. But the water constantly rises and the struggle is often present for me. I don’t know if that’s a function of my culture, of the way social media works, or of the mental health culture… perhaps it’s a little of all three?

Certainly we fear pain because we’ve turned intense pain, even grief, into mental illness, which means you are not well and should do things to become more well. Intense pain is at times necessary, needed, appropriate. A rational and human response to life. Add to this the pressure of peer work where you are supposed to show that you are now ‘well’ and provide hope for others by successfully remaining well. Social media can be a fantastic vessel for connection, but it also comes with pressures and vulnerabilities. People sculpt their online image with the attention of a company to their brand. They live in fear of the enthusiastic judgements and criticisms of public life, and they try to show their best side and most successful parts of life. The reality of their self and life becomes increasingly divorced from their public image. Often they police other’s sharing also, shaming those who express hurt, confusion, loss, or other ‘private’ emotions and experiences. This is not to suggest that people who prefer not to share deeply personal things or distress on social media are wrong or deceptive, merely that people draw the lines between public identity and private self in different places, and that a competitive culture of presenting a successful public self can be difficult to navigate. The lines between authenticity, duplicity, intimacy, and privacy can be a challenge to determine. Ultimately, most of us want a sense of connection but fear of judgement and hope for respect and admiration can be big obstacles.

Back to navigating pain. It’s not a complicated concept – go down into the pain and hear what you need and do it, and it will ease. And yet I find myself over and over again losing this approach, forgetting that it works for me, and I never hear it from anyone else. When I’m struggling responses range from the positive thinking to the hang in there, and there’s nothing wrong with that – people share what works for them, or what they think may help. But I never hear – go deeper into the pain, stop avoiding it, downplaying it, ignoring it. It’s real, it counts, it needs attending to. Surrender to it, and it will pass through you and ease. Over and over again I stumble onto the discovery that by letting go from the cliff I’m hanging from, I don’t die, and the world doesn’t end. I fall into it and it hurts and I come through it. I still haven’t found any way of fixing this knowledge into my mind or life.

I think this one of the biggest challenges of having a belief that doesn’t have a lot of cultural support. Sometimes the process of undoing one belief and building a new one feels like I’m deprogramming from a cult while I’m living in the next town over. It’s really hard, and there’s plenty of triggers around that reset my old beliefs so I have to wrestle out of them all over again. I think anyone that’s come through any kind of abuse, particularly entrenched in the local culture (school, family, church, club) and minimized, struggles with this vulnerability. You are given stories to understand yourself and your world that do you harm, but that on a deep level you continue to believe and fear may be true, even when you’ve decided that other stories are more accurate. Contact with these old stories (being molested isn’t ‘really’ sexual abuse, kids only cut themselves for attention, you’re a drama queen, you’ll never amount to anything, all mothers adore and do right by their children) can either trigger a major response – kind of like an immune response, or sneak in under your guard without you noticing. In the major response, you encounter a foreign story and you are half infected by it and half fighting it off. The more vulnerable you are to infection, the more dramatically you fight, and the more internal struggle you experience! The other option is much more subtle, a slow insidious poisoning where the story seeps in and takes hold and becomes your own without you noticing or putting up any kind of fight. Weeks or months later you find you’ve taken on their perspectives “I’m useless and lazy and never try hard enough” or internalised their ideas “I’m only bulimic, if I was really dealing with an eating disorder I would be anorexic” and are starting to live from them as if you believe them.

It’s so hard! It’s made even harder if you have little support for your new stories, if you are in regular contact with people who believe and push the old stories onto you, and if they have any kind of power or authority over you. Other things that can make it harder to keep your own beliefs is if you don’t really believe your new ones (eg. trying to use over the top positive affirmations “Every day, in every way I am getting better and better” can be a much more vulnerable position because the new stories are so unrealistic and unsophisticated with no room for back steps or grace for human flaws or bad days, that every day life can constantly provide you with enough evidence that your stories are not true that you are forced either into constant internal conflict or severe denial to maintain them). Self loathing and self doubt, which obviously spring from particular stories about yourself can also make this process more difficult as they naturally undermine all your other beliefs and endeavours and make you prone to hearing bad things about yourself as true and good things about yourself as untrue. A lack of emotional skin, which can be about trauma but is also often related to social power – the less we have, the more important others opinions become for our survival, also increases our vulnerabilities to living according to other people’s stories, and often these stories suit the other people and not ourselves.

This is where I come back to authenticity, and to the idea of truth. Truth is often complex, and we like to boil it down. We try to sum up our childhood, our relationships, people we’ve known, as if we could weigh the good and bad on scales and come to a definitive number. The reality is that this process obliterates and obscures truth. Finding truth is not about boiling down but about opening up. It doesn’t sum up all the complexity in a neat conclusion, it lays each piece next to each other, side by side, not over lapping. A simple example: my childhood was terribly painful. I was devastatingly lonely, witnessed violence and abuse, was traumatised by death and loss, suffered chronic suicidal impulses from the age of 10, and struggled with nightmares, self hate, guilt, grief, sexuality, gender identity issues, bullying, undiagnosed multiplicity, severe dissociation, and major trauma. That’s one story. It’s all true, all verifiable. My childhood was also wonderful. I was given free reign to be incredibly creative and adventurous, taught skills and resilience, offered freedom to explore rivers, climb trees, sleep out on the roof, light and cook my own meals on fires, wear wild clothes, explore artistic pursuits. I saw deserts and mountains, swam in icy snowmelt rivers, watched a meteorite shower, built a hay bale cubbyhouse to sleep in, stayed up late to watch lightning, nursed an injured baby goose for months in the pocket of an apron, ride motorbikes and go karts and beach buggies, go rock climbing and abseiling outback, bucketed hot water into a bathtub once used for stock feed in a paddock, and had a hot bath outdoors in the rain with my sister. This is also all true. People often try to ‘sum it out’ as if the good might outweigh the bad or vice versa. I’ve found that when one story obscures the other, I lose some important truth. It’s not or, it’s and. My childhood was wonderful and painful. It’s headbending, but its a key skill to be able to tolerate the tension of more complex stories like this, because single-note stories, black and white stories, often distort and conceal some truth that we need. There’s freedom in the contradictions.

Hanging onto them, even when they’re as accurate as we can craft them, as undelusional, as informed, as balanced as we can manage, can still be tough. This is where good therapy can build you up and be another voice of support (“I know your father says that you’re weak for being raped, but I also know that’s not what you believe and not how you feel about other people who’ve been raped”), or conversely where bad therapy can take your head apart (“You are manipulative and faking your issues for attention”). I also use a number of other sources of inspiration. My favourite artists adorn my walls, I reread my favourite books every year and own the movies that inspire me and inform the stories I choose to tell about myself and my life. For me, it’s about poetry, about heroes like Cyrano de Bergerac, Bradbury, Amanda Palmer, about the love of children, about all the things we use to anchor us in our beliefs and weather the tides that pull us off course and plant traps in our minds.

Absurdity is a gift

It’s been an exhausting week. Far too much bad news, challenging situations, and friends and loved ones under massive stress. Today, Rose and I were both fragile and depressed, with little left for each other. I collected her from work after a day of discouraging medical appointments and dull errands, and we drove home both in tears, at the end of our tether. We had friends visiting for dinner, so before they arrived we took a moment to touch base. Either we were going to reconnect and pull off a wonderful evening, or snap at each other and deepen the strain. We were able to sit with the triggers and hear each other and found as the tension lifted that our natural crazy sense of humour returned. We spent a wonderful evening playing board games, making jokes, and pulling silly faces at each other. In bed that evening we mused- we’d somewhat lost our humour lately. We had times of deep & meaningful conversation, or companionable connection, or heavy duty trauma territory, but it felt like it had been ages since we’d made each other laugh. What a gift it is, this simple thing. What a miracle that the world that weighs so heavy can be lifted by a laugh. Suddenly the road doesn’t seem so long or the night so dark. It’s the most simple and joyful form of mindfulness I know. It’s not about the destination, it’s all about the journey. There’s no better answer I’ve found to the scream trapped in the throat and the waiting for better years.

When have you last laughed? When have you last felt yourself step sideways out of crushing anguish and found the pain can make the humour sharp and black and driven and surreal but no less funny and no less freeing? I hope you disturb sleeping people and burst stitches and cry from the corners of your eyes and get a stitch in your side and blow chocolate milk out of your nose and gasp for air. I hope the absurdity of life helps you put down big rocks of pain and grief and play for a little while and pretend to be someone who isn’t dying inside, isn’t frozen by terror or crushed by pain or tortured by memory. And if you don’t have someone to play with, don’t forget that phones can record your silly faces and funny voices and baffling walks. Sometimes laughing is the bravest thing we do.

Families, abuse, & hope

Political systems have always been a facsimile of the predominant family dynamics

Parenting for a Peaceful World, Robin Grille

I’m about halfway through this incredibly challenging book. The most difficult and interesting part has been reading through a brief history of different approaches to children and child raising. The brutality and disconnection is truly horrifying. At one point Grille notes that the hysterical dissociation cases so common in the Victorian era are far less frequent now, probably due to very different child raising practices. Yet, I work with many people who’s childhood experiences were neglectful and abusive in probably very similar ways. Each family is like a tiny culture of its own, a mini country with its own customs and political structure. It’s interesting to also consider the reverse – looking at complex politics through the lens of a family. The same questions that can be useful to consider on the small scale are also relevant on the large – who exercises what kinds of power, and how? What is the cost of being the least powerful, or out of favour? How safe are the most vulnerable members?

Rose and I are talking a lot about families at the moment, as we plan our own. I find it interesting that our broader culture structure is capitalist, while our private family structure is closer to socialist, with much unpaid labour and sharing of resources. There’s a tension as we move between these frameworks in public and private spheres of our lives. So we have significant labour such as child raising, or caring for family who are sick, disabled, or frail aged, going largely unrecognised as they have neither job title nor a decent wage attached to them. Family power structures can be fascinatingly complex and subtle. Those who are obviously in power are sometimes only figureheads. Oppressed and brutalised family members are often the most brutal themselves in their enforcement of family traditions and rules. Families create their own mindsets, a framework through which members learn to view themselves and the world around them. When this framework is destructive, “You’re an idiot and you’ll never amount to anything”, “The world is dangerous and will eat you alive”, it takes massive effort to mentally and emotionally challenge these beliefs, break free of their hold, and construct new frameworks. Children basically grow up inside the ways their parents view the world. Many adult children of destructive families find that while they are trying to find their power to built and maintain their own beliefs, they are highly vulnerable to having their frameworks ‘switch’ to those of the family culture whenever they are anxious or in contact with them. Some families navigate such challenges with growth and new connection, others have harsh, rejecting, or even violent responses to what is essentially a war of ideologies. It can be a big challenge to maintain an individual perspective that does not mesh with the family perspective.

A task I once found incredibly helpful was to sit down and nut out the ‘rules’ of my family of origin – not the spoken ones, but the actual way we functioned. Sometimes these align, sometimes they don’t. This isn’t always a bad thing – in the case of a family with avowed ideals of patriarchy or harsh punishments, the reality may be modified and softened by genuine affection and care. No family gets it all right, and many have a combination of generous and altruistic practices mixed in with selfish and cruel ones. Those who have been raised with harsh practices may enjoy ‘their turn’ at exercising power rather than dismantling the abusive structure. But the process of deliberately choosing to observe the dynamics, to note the rules and the roles was extremely helpful for me. For example, many families have a role – the ‘lightning rod’. Whoever is in this role is available to be put down, made the butt of jokes, talked over, doesn’t get to make choices, gets less access to family resources, has to do the worst jobs or so on. This person is targeted as the source of family stress and they are available for the most powerful (not necessarily physically, but politically) family member to work out their frustration on. In some families the lightening rod is always the same person, in others it’s a shifting role as people go in and out of favour. In some families, being able to discharge tension in this way is the sole prerogative of the most powerful member, in others everyone must show their loyalty by treating the out of favour person badly. Sometimes there are factions and more than one lightening rod, with vulnerable members trying to maintain neutrality across all the teams and not find themselves in the least favoured role.

It can be useful to ask questions such as “Who gets their needs met?”, “Who has the most powerful vote?”, “Who’s plans get disrupted when something goes wrong?”, “Who does the most jobs they don’t like?”, “How safe is the least favoured family member?”. And then comes the most interesting part – how would you like your family to function? What rules did you wish your family really worked by? Many of us with challenging upbringings want to do better and can eloquently name the things we hated that hurt us badly – shaming, beatings, emotional detachment, poverty, and so on. Figuring out what we don’t want to repeat can often be much easier than figuring out what we’re going to do instead. For me, one of the things I really wanted my family to be was a nurturing place, somewhere it was safe to come home to when you were sick, hurting, anxious, or had failed at something. I want it to be normal for family members to be kind to each other, to help each other out, and to listen to each other. I sat down and nutted out a bunch of other values and ideas that are also really important to me. I found that they were pretty similar between family and friends too.

The next thing I found helpful was to start acting as if these values and ideas were normal in my family. Instead of instinctively obeying unwritten rules, I chose over and over again to operate from my own values. In my case, I had to do this with my eyes wide open because sometimes the results of breaking these rules were violent. People are often very invested in ‘the way things are’, even if they are suffering under it. Sometimes there’s a lack of hope, sometimes people are trapped by beliefs such as ‘If I was just a better person, everything would work out’. It can take time and coaxing for people to see that there is freedom and kindness possible in change. For those the current dynamics suit – those who are getting most of their needs met, or are comfortably placed within the power structure, or are so entangled with their own demons that they need a painful and chaotic environment around them – the protests can be intense. In some cases, change can expose people to life threatening consequences. This is one, of many complex reasons, that abused partners stay in relationships where they are suffering terribly.

Obeying abusive family dynamics will almost always require a person to violate their own morals and beliefs in some way. It might force someone to be a bystander when they find that intervening makes the situation worse. It might be that blaming and hurting the most vulnerable family member was the only way to be safe. There are often complex trade-offs where children may submit to abuse in the hopes of protecting their siblings, wives to rape in the hopes of protecting children, men to beatings in the hopes of protecting the women and so on. A complex network of attempts at self protection and protection of other family members often results in deep shame and a sense of failure. People in this position are embedded in the family dynamics and take on a sense of responsibility for them. With shame and guilt eroding their confidence in themselves, deep beliefs in their own worthlessness and incompetence, and a powerful and justified fear of the consequences of breaking the rules, it takes extraordinary means for people to start building new frameworks and escaping old dynamics. In some cases people will be harassed or rejected, in others they will be beaten, raped, or killed. In many situations I’ve observed, those who protest these changes do not even understand their rage, there is simply for them a sense that they are less safe, and they use whatever power they have to make themselves feel safer.

None of us is immune to this dynamic, and any of us who exercise any kind of power must consider this if we wish to handle it ethically. Even good intentions can take us down bad roads when we run solely on instinct and the desire to be safe.

The good news is that even the tiniest of gestures to break away from abusive dynamics start to generate a sense of identity and personal power. Within even profoundly abused people, a will to survive and to maintain identity is extremely strong. The entire ‘child abuse survivor’ movement is testament to that – as are the statistics on people – including children – who flee abusive families. While most will return more than once, within the deep conflicts of fear, hope, despair, and bonding, a desire for freedom remains intact. It may not be the most powerful voice, but it is still present. In violent families this change might be done entirely in secret – public obedience, but private kindness. It might be sneaking food to the child denied yet another meal, it might be covering for someone so they don’t get punished. Even secret collusions erode abusive power. They create a sense of personal agency that obedience to the rules takes away, and with that agency comes an awareness that you can and do disagree with what is happening. Environments that strip us of power and choice also reduce our possible responses to two options – we can comply, or we can rebel. In situations where the cost of rebellion is unmanageably high, most people will comply. In situations where the price of compliance is almost or is as severe as the price of rebelling – most people will rebel. Many of us actually alternate between the states, often instinctively trying to find a mid-line where we get the benefits of compliance such as approval, access to resources, protection from violence, some affection, and the benefits of rebelling such as freedom, the opportunity to connect with people outside this dynamic, and a sense of personal power and identity. Like abusers who do not understand their rage when change threatens, most of us engage both submission and rebellion instinctively and are confused and frustrated by our own drives for both.

Being able to truly disconnect from abusive dynamics is about being able to make room for a response outside of the submit/rebel dynamic. Some families (and other institutions for that matter – psychiatric hospitals spring to mind) make this extraordinarily difficult because every action of the members is conceived in a black and white framework of loyalty/disloyalty. They are for us or against us, they are one of us or not one of us, they are a good kid or a bad kid. For me, it helped to be aware of this framing of my choices, and not to mind them. While I engaged conversation about them, I did not initiate them, and I did not expect to persuade anyone. I simply identified what I wanted and acted from that. I wanted a family that was fair, so I resolved to treat members fairly, irrespective of whatever else was going on. This meant my actions were constantly misconstrued, because of course everything I did was interpreted through the framework the family was using. If I gave a gift to a powerful family member it would be assumed I was being compliant and currying favour, if I gave the same value gift to a disgraced member that was likewise a political act. This constant misunderstanding is often exhausting and debilitating to those who are trying to change the way they engage, and if their goal is to persuade people to a new framework, they can become deeply discouraged and give up, or increasingly defensive and get into massive rows. In situations where the stakes are high it’s important to be aware of the politics without subscribing to them. If an act could put you at risk of violence, homelessness, loss of job, custody, or other catastrophes, acting without thought for consequence is foolish. This process of being aware of possible or probable consequences can be immediate in some cases – “Father has always said if any of us drop out of school we’ll be kicked out of home” – in others it’s a slow process of observing the ways the stated rules “In this family we all love each other” and the actual rules “We don’t talk about your brother since he outed himself”, differ. Processing the reality when we’ve been fed a lot of lies and spin can be extremely challenging and confronting, and people are good at obeying unwritten rules while paying strong lip service to the written ones.

However, the freedom to choose your own response is powerful. Instead of merely reacting to what is present, you actually bring into being a new framework of your own, and live from that as best you can. This might cause minor friction or it might involve running to shelters and setting up new homes in new cities. Some of us pay much higher prices than others. Even with the best of intentions, you will at times fail to live up to your own values and standards. But the more you have set them for yourself instead of having them imposed upon you, the more congruent your beliefs and actions become, and the less internal struggling and weakening of identity occurs. It’s a powerful, gradual process, where the first tiny act can be nightmarishly difficult, but each subsequent one a little easier. Instead of being a pawn for the use of the more powerful, you become a player in your own right, exercising freedom of choice over your own actions and accepting the prices if you think they are worth paying. This may be profoundly unfair, involve intense grief and loss, and it can be extraordinarily difficult to maintain a minority perspective in the face of massive opposition or total indifference, but it can be done, and the gains are massive. Being able to have complex, deep, authentic relationships instead of living under the yoke of roles is an amazing experience. Claiming freedom to create a life that is personally meaningful is profound.

Learning to see the giants of our childhood as people who themselves live with the ghosts and shadows of childhood, is a perspective we can only reach when we have somewhere safe in our heads to stand. It can help move us away from attraction/repulsion, submission/rebellion, and into a place where we can see the people behind the roles. This is a much safer place from which we can feel the compassion for vulnerability and loss that may previously have trapped us or exposed us to harm, or likewise the judgement of narcissism or brutality. We can be freed from the black and white thinking where we can perceive only with compassion or only with judgement, which means our actions are more informed by the whole complexity that makes up a family, and less the instincts of ourselves as a stressed child. It can be the start of breaking away and getting out, or the start of reconnecting and making something real – or sometimes both at the same time.

Links between childhood trauma & adult chaos and hoarding

I know these two things don’t seem to be related, but my experience has been that for some people, there’s several links that can be very difficult to manage. Not everyone who was traumatised or abused as a child struggles with mess & chaos as an adult – and vice versa! Plenty of people who’s personal style is more ‘trench warfare’ than ‘glossy magazine’ haven’t been abused. And there’s a natural diversity here that I don’t wish to pathologise! But for those who have experienced childhood trauma this can be a difficult aspect of their lives, one that causes conflict and shame, and can be depressingly resistant to efforts towards change.

I once had a friend, I’m going to call them Nicole, who really struggled in this area. Their living space, and most especially their bedroom, was in a constant state of chaos and uncleanliness. Things were not just messy but in major disarray. Lack of clean clothes, bedsheets unchanged, food leftovers not picked up, mess from pets not cleaned away. Her spaces ranged from untidy to actual health hazards with moulds on walls or tiles surfaces and in food areas, and food scraps attracting rodents and bugs. I remember being initially confused and then repulsed by the state of her home. I couldn’t understand how anyone could live this way. I would help out from time to time when Nicole became really overwhelmed by it all, and between the two of us we would clean everything back to sparkling and she’d vow to do better. It never lasted. The more I helped out, the more I realised that there was more than messiness going on here. I’ve lived with messy people, they’re a pain to pick up after, but if you’re fairly diligent and there’s not too many of them, you can keep up with things. With Nicole it was different, it was more like she was at times actively trashing her space. And yet, she hated it. She wouldn’t invite friends over because she felt so ashamed of her home. When she house-shared, it was a constant source of massive conflict with her house mates who became fed up with promises to change that never came through. She struggled to maintain work when she couldn’t find any of her resources, important documents, or food for breakfast or lunch. When things got very bad her personal hygiene also suffered, without clean clothes it seemed pointless to shower, the bathroom was unpleasant to spend time in so she would also stop brushing her teeth and hair. Profound humiliation set in as she would take long stretches off work on the basis of anxiety, and self harm and suicidiality would be the result of this awful spiral.

It was so distressing to watch. We talked about it and over the years we started to tease together some idea of what was driving it. Nicole isn’t in my life anymore, but I’ll never forget the conversations we had, and my slowly dawning awareness of the links between her mess and her history of child sexual abuse. We coined a phrase – graphic, but appropriate, for the need that the mess sated – it was her moat of corpses. For a child who hadn’t been safe in her own bed at night, surrounding herself with filth and mess made her feel safer. She slept better at night with the comforting notion that anyone sneaking into her room would fall over the trash so she would hear them coming, would be put off by the mouldy food, might decide it was all just too much trouble. Once articulated however, this idea simply made her feel more humiliated and helpless, like confessing as an adult to a fear of the dark or still wetting your pants. (Neither of which are uncommon for people sexually abused as children when they are triggered and stressed) On some deep level, her inner child was still terrified of sleeping in bed, and found the mess a comforting barrier, and the idea of being unclean and unattractive far safer. These needs, difficult to explore or understand as they were, were far stronger than Nicole’s other needs for order and cleanliness and comfort in her own space. The essence of the struggle was a profound sense of not being safe, and a struggle for control between her deeply ashamed adult self, and her terrified and abused child self. (using this language in the sense in which we all have parts, rather than that of multiplicity)

I’ve since come across this dynamic many more times, with friends or loved ones, or people I’ve reached out to in my mental health work. At times issues like this are driving the cluster of behaviours we call ‘hoarding’, although there are many other things that can instead be at play. I’ve noticed a few more links between childhood trauma and chaos, one is that of the child who is raised in chaos and has no models of how to use adult routines and systems. If you’ve ever helped a child to clean up their room when it’s been completely trashed, you’ll know that children struggle to work out how to break such a big task down to small steps. Helpful adults show a child how to tackle tasks like these ones, perhaps like this; start by putting all the laundry and bedding on the bed, then let’s put all the shoes in the shoe box, now the toys back on the toy shelf, now the lego back in the lego box, now we’ll sort the clean washing from the dirty… and helpful adult have set up basically useful systems in their houses – like having a toy shelf and a place for shoes to go, and a routine at evening where everyone brushes their teeth before bed. Chaotic houses are not like this. The adults in these houses are often either distracted (such as with a very sick child in hospital), overwhelmed (with mental illness, grief, or addiction), lacking in these skills themselves, or abusive or neglectful and do not invest energy in the child’s environment and well being. It’s important to note that chaotic households are not always abusive, particularly in the instance of very bonded parents there may be a great deal of love and fun in all the chaos! But without someone to model how to use systems and routines, kids struggle to develop these skills. In houses that at times also felt unsafe and highly stressful, this effect is compounded in that it can be harder to simply tack on a few extra skills once adulthood is reached.

In other situations I’ve seen children who come from highly organised households still have huge struggles in these areas. Sometimes an abusive parent is not chaotic, but rather wears a mask of caring investment in their child. Children of these parents often reject their hypocritical role model – and so also reject the valuable skills around maintaining a home. It takes a lot of processing, maturity, and self esteem to be comfortable in any way resembling someone who has badly hurt us, or whom we despise. Sometimes it is not the parent who is abusive, but in strict households where order and neatness of appearance are prioritised over connection and expression of emotion, children who are traumatised or being abused in another setting can find themselves under tremendous stress at home when their ‘normal’ reactions to those experiences are interpreted as disrespectful and disruptive. Huge power struggles over issues of neatness and hygiene can result, with the underlying issues of poor self-worth, emotional exhaustion, alienation, and intense emotional pain going completely unnoticed. Rebellion against house rules that are perceived to be overly strict, or designed with the intention of ‘looking good for other people no matter what’s really going on’ can become an entrenched behaviour into adulthood. For many people in this situation, arguments about cleanliness with family members continue well into adult life and remain a constant point of conflict. Awareness that developing these skills and resolving the issues around chaos would meet with family approval can completely block any progress in this area when this approval would be distressing. At times the need to be in opposition to people is far stronger than our need to feel successful in our own lives.

There’s a lot of overlaps between the kinds of dynamics I’m describing and those I see in families where someone is struggling with dangerously disordered eating. There’s both the issue at hand, and the challenge of the massive stress it causes in key relationships. Caring about someone who is a trauma survivor can be challenging. Sharing a space with someone who keeps trashing it can be a source of intense distress! The conflict of needs is not just within the person, but within groups of families, friends, housemates, and neighbours. In severe forms, this can be a health hazard. People can get sick from improperly stored food, or where fridge or freezer doors are left open, moulds can trigger allergies and respiratory issues, and the psychological impact of living in a permanent tip can be huge. It may not be possible to have friends to visit. It can be a huge struggle to maintain your own life and routines when there are not only no clean dishes, but even the dirty ones haven’t been put back in the kitchen and you have to go looking for them every morning if you want breakfast. Mail gets lost. Important things are left in the rain. Broken glasses are trodden on at night in bare feet because no one cleaned them up. The back yard is a mass of dog shit, broken toys, and flies. Undesexed pets spawn litters that are sickly and difficult to home. For some people, the shame is catching, and living with a parent, sibling, or housemate who generates this kind of chaos can make people feel very ashamed. A sense of misery and hopelessness descends. It’s a difficult environment to take good care of yourself in, to feel a sense of dignity and self respect in, even to think clearly in. With all of this comes a sense of being held hostage to someone else’s demons. Efforts to fix everything don’t last or are rejected. Cycles of feeling sorry for them, of ignoring it all, of being really angry with them, cleaning it all up, and numb depression never seem to resolve, except with explosive ruptures where households disband. The underlying shame is re-enforced and there’s no way out.

If you are someone who struggles with chaos, take heart! You don’t have to be caught forever in a spiral of shame and rejection. You may be able to find ways to resolve the needs and learn the skills needed to keep a home ticking over, or you may remain messy and chaotic, but either way you can manage this. The very first thing people often need is a way to be able to think about this without hating themselves. You’re not just a horrible person. It’s not that you don’t try hard enough. I know that you have huge blocks in your head that make this incredibly difficult to even think about, much less act on. It’s not your fault.

If you are living with someone like this, also take heart. You can break out of the cycle and find ways not to be drowned by it all. You don’t have to be caught between feeling sympathy for them (and putting up with it), or hating or leaving them. You are allowed to love someone who is flawed and has been wounded, and struggles with chaos as an adult. You’re also allowed to insist on your right to feel safe and not at risk of harm in your home.

Being able to accept that this is an issue can be a radically different approach when everything you’ve always tried has been either fix it/live with it. This approach is about reducing shame and trying to untangle all the different valid needs that people have. Shame often intensifies the stress that drives this behaviour, creating a loop that drives everyone insane.

Containment is a key need. The spiral I described that Nicole would get into started with messy bedroom > chaotic home > work stress > lower personal hygiene > self harm > feeling or acting on suicidal feelings. If she was flat sharing, the messy bedroom wasn’t the end of the world, but the chaotic home stressed her flatmates, and self harm or suicidal impulses made them scared, angry, and tended to blow up simmering stress into major rejection and restructures. If the spiral can be interrupted, and the chaos can be contained to some level, the catastrophic results don’t come into play. There’s many different ways this can happen. Perhaps 1/2 day a week, everyone cleans up the house together. The rest of the time it might be trashed, but this is a regular enough team effort that it is never too unmanageable to live with. Perhaps rules around safety are agreed upon and the home is allowed to be incredibly messy provided there’s no fire or health hazard. Perhaps the person with the chaos lives alone, or in a separate space, which can be trashed without distressing their partner or family. Perhaps some more money is needed to help set up systems – shelves for boxes, wardrobes for clothes, a fridge with a door handle. Poverty and chaos are often tangled together and they can re-enforce each other. Considering that each often generates disgust and contempt from other people, those struggling with both these issues are in for a very challenging time.

Perhaps different home set ups are explored – often when these dynamics are in play it’s like there’s only two options – trashed, or magazine perfect. Homes come in so many different flavours! Sometimes the magazine look is a huge trigger, but a hippy home full of lamps and rugs, or a thousand knick knacks on shelves, or a collection of indoor plants becomes a space that feels safe and able to be tended and looked after. Sometimes rooms need to be set up differently! If bed feels unsafe, maybe you need to sell the bed, sleep on the couch with the dog for a year, set up that sewing room you’ve always wanted. Maybe you need to move away from our modern trend towards open plan living, and set your bedroom up as a labyrinth, with shelves in front of the door, a box to step over, a lego bucket as the world’s most lethal moat, a lock on the windows. When you’re not feeling overwhelmed by shame, and that not having this problem any more is the only way you’ll be acceptable to friends and family, suddenly you can tap into your creativity and find other ways to manage it.

It’s important to protect other people from our demons, and in some cases where chaos is a trigger for your friend or partner, it can be very difficult! Sometimes our particular demons do not play well together. It’s not the end of everything, you can create enough safe space for your relationships to be happy despite these challenges. They don’t have to dominate your life, threaten your relationships and self respect, and bring social workers into your home. There’s some great resources online such as Unfuck Your Habitat. Part of this is about skills, but a lot of it is about the blocks that can make those skills so hard to learn as an adult. There’s room in life for blocks, we all have them! You can find ways to manage the stress and limit the damage. Good luck!

My experience of sexual health counselling

A few years ago, I took myself off to see a counsellor at my local sexual health clinic. I was anxious as all hell, looking for some support while I grappled with my sexual orientation and dysfunction after previous distressing sexual experiences. What I thought was going to be a brief fix to my anxiety, sending me on my way with some reassurance, has turned out to be some of the most useful and powerful therapy I’ve done. This is completely at odds with everything that says that people with DID need intensive therapy by experts in dissociation and multiplicity. To be honest I manage a lot of that side of my life pretty independently. But help in some areas, such as sexual health, has been invaluable for me.

I didn’t see the counsellor very frequently, often we had a month or two between appointments, but the conversations have changed my life. I developed a routine for sessions, I’d follow them with a trip to the Shine SA resource library and borrow books about bisexuality, sexual dysfunction, sexual development, sexual health in seniors, feminism, gender, and culture, essays about being the children of gay parents, and so on, then I’d head over to a café to sit and ponder the session, write in my journal and sometimes cry into a my chai latte.

What I’ve learned is that sex isn’t a side issue the way we think it is. It’s treated as a specialist topic, quite separate from other issues such as trauma recovery or mental health. But for me, it’s not an issue off to the side of my life, it’s part of my foundations. My experiences and beliefs about sex impact my sense of self, my approach to life, my ideas about relationships. Conversations about identity, power, communication, relationship, love, consent, and desire have had a profound impact upon most aspects of my life and health.

I started with thorny confusion about things like: I think I’m into women, but what if I’m wrong? What if I start dating, some lovely woman falls in love with me, and I break her heart? What if my attraction to women is caused by abuse? What if I’m just trying to piss off my father? …Or conversely, what if I only think I’m attracted to some guys because I’ve been culturally conditioned to think that’s normal? Or because of abuse? (if abuse can make a straight person think they’re gay, can’t it also make a gay person think they’re straight?) Does God hate me? Is this about lust or love? Can it be both? Does what happened to me ‘count’ as abuse? Does my history mean I might abuse other people? How do we define abuse? How do we engage as sexual adults when we’ve been traumatised as children? Does abuse really destroy you forever? Is it possible to have a great sex life after trauma and abuse? How do I navigate coming out late in life?

I have never been able to discuss most of these things with other therapists. Even those who specifically work in the area of trauma and child sexual abuse have not been comfortable discussing sexual matters explicitly and matter of factly. We would talk in generalities, but never openly. Usually the therapist would look deeply uncomfortable and change the topic.

In this therapy, all things were discussed, without shame. There was space for frank discussion, it was respectful, appropriate, and very real. I remember one session starting with the therapist looking me in the eye and saying “so let’s talk about masturbation”, as I blushed with embarrassment and laughed with relief that here, the taboos could be spoken of. (obviously we had a rapport at this point) What use is therapy, if not for the discussion of things you can’t speak about?

These conversations have touched on crucial issues that have helped me to understand so many other areas of my life, such as key experiences that drive my intense self hate, my distress and confusion about the exercise of power, and my tangled and painful sexual development and struggle to reconcile myself to my sexual orientation. More importantly, they’ve helped to free me from them.

A while ago, I said thank you and goodbye. I was sad and grateful and looking to the future. I have navigated coming out as bisexual, and found myself a comfortable place under the umbrella term queer. I have started dating and fallen in love with a beautiful and complex woman, Rose. I have gently ended seven years of celibacy and discovered it is possible to have a wonderful sex life despite having an abuse history and issues with trauma. I have learned a vocabulary I am comfortable with to think, read, and talk about sexual matters. I have overcome sexual dysfunction. I used to suffer from vaginismus, an involuntary flinch reaction due, in my case, to traumatic experiences. While I still don’t like them, I can usually handle medical interventions such as gynaecological exams. I no longer sob with some undefinable, overwhelmingly intense grief every time I masturbate. I’m learning to embrace the diverse gender identity within our system. I have a context for pain and confusion in my childhood. I have begun to understand the cost of family secrets and cultural norms that I inherited, to find ways to face and understand legacies of shame and fear. I no longer think that I was a monster as a child. I am beginning to understand just how little we do understand about sex and sexual development. I am facing my demons and finding some frameworks that make sense. I am looking to the future and thinking about how I engage the world as a parent.

I’m not finished. I’m still living with trauma. I’m still living with the devastation of a family divided by abuse, shame, secrets, and fear. I’m still living in a culture that treats sex as a commodity, that confuses love with narcissism, that struggles to understand consent, that traps victims of abuse in a place of disconnection, silencing, and the expectation of permanent dysfunction, and groups all offenders, those fearful they could be offenders, sadists, the abused, children, criminals, people in breakdowns, pimps, into one box marked ‘inhuman, evil, kill on sight’. I still have questions, losses to grieve, things to understand. But I don’t look at the world, or myself through the old frameworks any more. On the one hand I have a powerful legacy of trauma, distress, self hate, and confusion. On the other hand, there’s absolutely nothing wrong with me and never was. I don’t need to hate myself or to fear sex.

Our ideas about child abuse are often inadequate and ill informed. In the same way that I hear so often often from people struggling with multiplicity who “are not a real DID” (their words, not mine), we don’t have a good understanding of the diversity of people’s experiences that cause pain and suffering. Each creates its own ‘Gap’. There are those who experienced the horrible, sordid stories we are familiar with, who understand how effortlessly lives are split into day and night, the things we speak of and the secrets we keep. There are those who’s stories sit further down spectrums of torture, victims of organised crime or isolated with inventive sadists and debased in ways that defy our sense of hope in humanity. There are also those who experienced harm in contexts that left them wondering if they had any right to claim refuge under the term ‘abuse’, cousins on the farm making grotesque comments about animals mating, a teacher who stood too close and arranged too many private conversations and spoke about his sex life but never touched, an aunt who left porn lying around the house. There are also people who’s harm was not exposure to sexual contact but to silence and fear and shame about anything sexual; menstruation, nocturnal emission, infatuation. People who have never been sexually abused but who have been told they are ugly and repulsive for years, who find this makes sex an experience of painful exposure and deep shame. People who were told they were lucky because they were only ‘almost raped’, or because they were beaten instead of molested. People who struggle to make sense of their experiences and untangle their unique combination of terror, numbness, excitement, shame, curiosity, self loathing, comfort, and loneliness. Some stories have a familiar anguished simplicity to them, the brutality of a more powerful person taking from a more vulnerable. Others are paralysingly complex, people who found some comfort in the sexual experiences when the other parent was so terrifyingly violent, or children who re-enacted sexual abuse in games with each other without realising their gravity. We tend to want to rank traumas but my experience has been that anything that makes you feel disconnected from yourself and the world around you, any story you can’t share and own, anything that makes you hate yourself, has the power to kill you.

There are not many in my past who did wrong with the intention to harm me. Some of my bad experiences for example, were by a peer, then also a child, who had themselves been terribly abused. Sadism is present in my story, but it doesn’t dominate it. Most of my ‘monsters’ were themselves profoundly damaged and abused, which is in some ways easier to process and understand, and in other ways harder. Part of my pain was stories told and secrets that were shared that needed keeping still, and part of it was also being forced to observe sexually abusive behaviour between other people in my personal life. Self hate and a profound conviction that I was evil, and myself a monster, stemmed not only from abusive experiences, but from confusion about my own culpability as a young child, from appalling frameworks that made it impossible to develop any interest in sex without being framed as a monster, creep, unfeminine, dirty, or unholy. Frameworks where being queer, multiple, having a complex relationship to gender, and being attracted to other women were all seen as sickness, sin, and depravity. Frameworks where I was not allowed to control my own body, not allowed to say no to touch that made me uncomfortable, where I must play a role and obey social convention. Frameworks where my body belonged to someone else for their pleasure, where the stakes were astonishingly high and the risks of failure to be perfect and behave as I was required to could not just impact my life but damn my eternal soul. (this is not to suggest that all religions have harmful attitudes towards sex, or that all non-religious cultures are sex-positive)

Like my experiences with bullying, the incidences of contact we think of when we talk about child abuse are not really where the most damage was done to me. There was a much more mundane, insidious harm. The cultures of ignorance, secrecy, shame, confusion, and victim blaming is where I suffered. These cultures can harm people without any direct abuse ever taking place. When we make all the conversations about trauma, and a narrow definition of trauma at that, so many people with struggles miss out on support and resources. I remember once asking a psychologist I was seeing if I could attend the ‘sexual abuse support group for women’ he was facilitating. He told me that my none of my experiences of trauma really qualified as abuse, and that would make the other women feel uncomfortable. It’s been cold comfort to later piece together the complex jigsaw of my life and determine that some of my experiences certainly did fall within that definition.

Like many of us with bad experiences, I’m still grappling with how to translate my knowledge into something that is an asset rather than a poison for my own children, into wisdom and courage instead of paranoia and shame. How can we bear it, those of us who know exactly how vulnerable children can be, and how dark the world but can get? I cannot go forward with the belief that I can control everything and prevent terrible things from ever happening. I can hope that my familiarity with this particular underworld may have sharpened my senses. I put my faith in all the learning that tells us it is not so much the act of being touched that does such harm, it is the lack of support and love, it is the world shattered by secrets, it is the stories we tell to and about children who’ve been hurt, and the stories the abusers tell them, and the stories children tell to themselves. Terrible things sometimes happen to children. This knowledge makes me want to scream at a pitch that will shatter the world. But people also heal, and they heal very well when they know that the world can be terrible, when they can speak about their pain, and when they have love and support and skills to navigate trauma. Many, many cultures in this world who have been destroyed by war, famine, poverty, crime, earthquakes, and the horrific sex crimes that often accompany crisis and social breakdown would attest to this. Resilient cultures mourn and rebuild. I will try and figure out how to be part of a resilient culture, and how to support my children to be resilient. I will try to make sure the frameworks are good, healthy, sex-positive ones. Between the rage and the terror, I will try to accept my limitations in making the world a safe place for my children. I will fight and be aware and do everything in my power, and then I will try to have faith in our capacity to grieve and heal.

I am less afraid. I can speak now. I can read books, search the net, look for information when I’m lost and confused. I’ve found that I’m not alone. Conversations about sex happen everywhere in my life now, and there’s so many people struggling. People with abuse histories, with disabilities, mental illness, with orientations, identities, or desires that mean they don’t fit in the majority, people with anxiety and confusion about sexual health, desire, love, consent. The need is so much greater than me, which is why I started writing my series about emotionally safer sex. I’ve not been struggling and confused because there was something wrong with me. I was struggling and confused because the whole world is conflicted. Mixed messages, terrible advice, wild assumptions, misinformation, disconnection, disappointment, grief, and confusion are everywhere. We confuse privacy with shame, bragging with honesty, coercion with romance, obsession with love.

In sexual health counselling, I found what I needed to be able to engage with this part of the world, and this part of adult life. I don’t have all the answers, but I have a place to stand. The most useful part of this counselling for me, when I drown in shame, confusion, and silence, is the very clear memory of someone speaking with me with compassion, without disgust, without fear. Conversations that untangled sex from shame, and desire from destruction. My hope is that, in some small way, sharing such a personal experience with you will help you also to find this place within yourself, or to be a gentler and more loving support to someone else who hasn’t found it yet.

PTSD friendly bedroom

Rose and I rearranged the house over the weekend. PTSD trauma stuff often has the same settle and flare pattern as chronic illness, and there’s a flare lately which is killing sleep. So, it’s a good time to work on the sleeping space.

I had my art studio set up in the master bedroom of my unit, and a queen size bed stuffed into the small room. Unfortunately this meant the bed was pushed against a wall, so whoever slept that side had to clamber over the other one to get in and out. We swapped sleeping sides depending on who was feeling the most fragile about feeling trapped. Now we’ve got the reverse, the bed in the master room with space on three sides for leaping in and out, and my studio table in the small room. It’s a brilliant change and is making tough nights just a little easier.

We also get to open the widow in this room as it faces the front of the house – the other room faces the back and Zoe destroys those screens when there’s thunder and she panics in the yard. A cool breeze during trauma stuff is super welcome, as is being able to lie in bed and look out at the garden instead of into a shed.

There’s not enough room in the smaller room for all my art supplies, so our bedroom has shelves of brushes and turps, which is also helping. Sometimes if trauma has a link to a particular room it helps a lot to do things that make the space feel really different. So it’s not a straight bedroom, it’s a bedroom-art-studio with paints in the drawers and ink paintings on the walls.

There’s still nightmares and distress and broken sleep. But these gestures help a little, in between them there’s content mornings reading in bed with the cats. And the fresh realisation that the patterns and arrangement of your life exists for you, if it’s hurting instead of helping you don’t just have to grit your teeth and struggle. However unconventional it may be, you find something that works for you. There’s things you can’t change, and things you can.

Your problems are your fault

It’s hard to be present in the face of pain. Sometimes it’s really hard. If we’re already feeling fragile or scared, someone who is hurting can feel like a whirlpool that sucks us down. If someone’s pain is really big and deep and strong, being with them on any level can feel like we’re caught in a storm. The sense of helplessness can be overwhelming. We want so badly to make it better. We want to stop them hurting, to ease and heal that tangle of futile rage and helpless hurt. I’ve been here. I know what it’s like to have no words for someone, to fumble badly and find myself turning to silence or clichés because I don’t know what else to say. I remember the terror I felt the first time I went to visit a friend in hospital after they survived a suicide attempt. Walking in was so damn hard, I was so frightened that I would do or say the wrong thing and make it all worse. I remember sitting with someone I loved who was in emotional agony, night after night, and literally singing to myself in my head to dissociate from their distraught, racked, sobbing because it felt like it was going to kill me. I have spent a lot of my life in pain, and I have spent a lot of my life reaching out to other people in pain. I still get scared, and I still stuff it up.

We are to some extent, wired to ‘catch’ emotions from each other. We’re social, we live and work and play in groups and families. Emotions are powerful ways we connect to each other and communicate with each other. We mirror emotions in each other. This can be a wonderful thing, it can help us to realise something is badly wrong and we need to be scared before someone even opens their mouth. Our ability to treat each other as human is partly founded on our ability to empathise with each other. But it can make it hard when people are hurting, because we feel a little of their pain. And we hurt too because we have to witness it and face our own inability to fix it, and that helplessness is a really hard place to be in. We also hurt and get scared because it’s frightening seeing other people hurt and realising this could be us.

If we are brave and skilled, we can be with people who are in pain. If we lack courage, we’re too vulnerable ourselves, or we don’t have the skills to stay afloat, we are left with really only response – distance. We might simply go silent. We might stop calling or visiting the friend with cancer, we might block the family member who is drowning in depression. We just retreat, make our excuses, and quietly move the threat out of our lives. Another form of distancing is to blame the person who is in pain. If their pain is in some way their fault, it gives us a lot of breathing room. We can disconnect empathically, because the solution is right in front of them and they are foolishly not doing it. We can feel less afraid of going through what they are suffering, because we know better. Some people blame to justify leaving. Others stay connected but use the blame to distance themselves and protect themselves from feeling the hurt too.

Anyone who has suffered has had some experiences with people distancing themselves like this, and it’s extraordinarily painful. Take whatever it is you’re already experiencing, and magnify it significantly for every time someone plays the role of Job’s comforter in your life. It’s a cruel twist that other’s people inability to handle your pain will add to it. People distancing themselves hurts. People telling you that there is something you are doing wrong, or something you are failing to do, that would make everything better is a kind of torture. I’m not talking about people sharing resources – that is a wonderful thing, and many of us spend a lot of time passing along and gratefully receiving suggestions for therapies, physio’s, and good books. This is done in an attitude of shared humility – hey, this thing was helpful for me – it might work for you! It’s timed for when we’re looking for information, and we feel like equals. Blaming you for your problems may be done under the guise of ‘trying to help you’ but it is actually about managing discomfort around pain. It’s done when you are most hurting, without connection but in place of it, and the more distressed you become, the more adamant they are that all this upset is simply needless if you would just see their doctor/meditate more/ask for forgiveness from God/fix your karma/take this supplement. It’s not about your pain, it’s about theirs. For you, being told that you have control over something you simply don’t is an impossibly painful place to be in. The only thing more distressing than being bashed against some terrible obstacle – be it sickness, grief, mental illness – is being told that it’s not actually there in the first place.

There’s whole branches of self-help and spiritual ideas that are specifically about this kind of distancing. Books and gurus that are geared around making us feel better about awful things that happen to people by reassuring ourselves that we can avoid it. It’s a form of victim blaming. The most obvious forms we tend to see in situations of violence – the ‘s/he was asking for it’ line after a sexual assault. Facing that the world is not under our control is a hard thing. There ARE things we control, and they are very important! When we try to control things we can’t – or when we’re expected by people around us to be in control of things we are not – it’s like a moth trying to reach the ligth inside the globe, or a fly to get through a windowpane. It’s a futile nightmare, and it takes energy away from the things we CAN actually do in our difficult situations. When it comes to sickness, grief, and other kinds of suffering, there’s so many ways to make it someone’s fault. In spiritual practices this is as simple as a ruthless assessment that the suffering person in some way deserves their lot. God, the gods, spirits, or karma are doing their thing. It is fair and just and the person should either endure it and be ennobled by the experience, or figure out what they’ve done wrong and make amends. Sometimes it’s conceived of as a ‘test’ of some kind. The single standard feature is the horrible lack of empathy hurting people are treated with. The self help alternative health sector can also be ruthless. Entire disciplines of thought have developed around the idea that people are in control of every aspect of their health and able to control their experiences. Much of this is a warped take on some very real, very important discoveries about how people function. Books such as Louise Hay’s You Can Heal Your Life put forward the idea that all physical illnesses are caused by emotional struggles. This is a gross misunderstanding of the reality that our physical and emotional health are interrelated. Blaming the person is not a new thing, and it especially occurs around conditions and diseases we don’t really understand yet. The victim blaming ‘it’s your personality’ theories that used to be levelled at people with tuberculosis are now dumped on the door step of people with fibromyalgia, for example. These ideas put sick people under impossible strain and tend to polarise the conversation – everything is emotional and under your control – everything is physical and how you feel is irrelevant. This clouds the information we actually need to be able to manage it.

Let’s look at what we do know. Physical illnesses are physical processes. Aids, cancer, strokes, cholera, chromosomal abnormalities, and so on, are not caused by grief, issues with your mother, or a lack of self love. There is a physical mechanism in action. Sometimes there’s things we can do about this – good diet, care about sanitation, keeping an eye on genetic conditions. Sometimes there isn’t, bad luck deals us a crappy hand and we do the best with it we can.

Our emotional life is different from, but connected with, the rest of our health. Sometimes it’s the filter through which we experience things – for example, our perceptions of pain are far more intense when we feel scared. Sometimes the interaction is more direct – how we feel can impact how our immune system functions, and how quickly we heal. Sometimes it’s more subtle but even more powerful – how we feel influences our life choices, how much energy we have to look after ourselves and how much we care for our bodies. Sometimes we can trace the mechanisms by which emotions and health interact, and sometimes we can’t. But there’s no denying that they are, indeed, very important! Dr Dean Ornish has written a beautiful booked Love and Survival, which details the costs of experiencing things like loneliness, and the health benefits of intimacy and love. Research projects of many different kinds with many different conditions demonstrated that feeling loved and supported was a key – something the biggest single factor in recovery or preventing relapse – bigger even than diet or exercise or smoking or other things we know are huge risk factors. Sick people who felt lonely, unloved, or lacked support were twice or three times more likely to die. Emotions do matter, a great deal! But they do not give you control. You cannot stop planes falling from the sky, or cancer, with your feelings. For every story of someone who miraculously survived an illness, apparently due to positive thinking, there are ten amazing people who loved deeply and looked after their bodies, and were very optimistic, and had children to live for who died anyway.

So, where does this leave us? How do we untangle this information? What do we do with it? Well, let’s look at the context. Emotions don’t happen in isolation. The primary arena for this – whether it’s healing or harming us – is our relationships. That means those of us who are unfortunate enough to be lonely and isolated, or abused and put down, are a lot more vulnerable than those of us who feel loved, connected, supported, and nurtured. When something bad happens and we’re in a lot of pain, we’re often very scared of being rejected. We know that people may feel overwhelmed and distance themselves, and we try to manage this in different ways. When we’re also under pressure to be positive and make ourselves magically well, we often try to shut down our emotions. Some of us are very good at this and will wear a cheerful face through the most harrowing of circumstances. Some of us are terrible at it and anguish leaks through all our attempts at suppression. Either way, we often start this process of trying to distance people from our pain. This disconnection can leave us very lonely in a crowd, without anyone we can be real about our feelings with. When some of our people also struggle and distance – for some unlucky people everyone in their networks will distance – we find ourselves in exactly that vulnerable place of isolation that makes our situation so much harder.

The research out there about how emotions impact health suggest that, rather than blaming and distancing, entirely the opposite response is needed – empathy, connection, shared experiences. The distance/blame response actually sets up exactly the most vulnerable emotional circumstances for hurting sick people. So the guys doing the loudest, most unbalanced shouting about how important your emotions are to your health are setting the stage for causing harm to people already sick and in pain. Most of the times this is not at all the intention! But to claim it’s all altruistic is also a bit disingenuous. Even if you think you have the cure for a dying person who, through stubbornness, won’t take it, you approach them with love. And with a little integrity you quickly find that for every miracle, there are so many of us who don’t get them. We’re not bad people, or unloving, or denying the possibility of hope, or out of touch with spirituality – or at least, not more than all you healthy people out there. If you can’t see that you’re not much of a friend.

If you are struggling with people stuffing it up when you’re hurting – welcome to the club. And sadly, experiences of pain don’t really equip us with the skills to be automatically awesome when other people are hurting too. I wish it did! But it can motivate us. We don’t have to get it right all the time. Muddling through is good enough. The quote I’ve used to guide me – both to forgive well meaning friends and to comfort myself, is ‘the friend who comes, and holds your hand, and says the wrong thing, is dearer than the one who stays away’. Try to find some grace in your heart for those who love but stuff it up. When you are less overwhelmed, maybe you can share what you do need or need to hear and what isn’t helpful. Or maybe you can lose it and be honest about your feelings and then make up. For those who stay close but don’t listen, don’t empathise, don’t connect, and keep distancing – be careful. This can be abusive and destructive. They may totally disagree with your ideas and approach, but a basis of a relationship has to be that respect for you and some sensitivity to the distress their approach is causing. Some people get off on causing other people pain, and some people work through their own issues around suffering, vulnerability, and mortality on handy nearby hurting people. Don’t let anyone drip feed you poison. Losing ‘friends’ like this might be painful and lonely and bad for your health, but my experience has been that networks full of people like this do far more harm than loneliness does. 

In an odd sense, I feel I was lucky. When I was a kid, as the eldest girl and the one with a knack for first aid, I was taught how to comfort a distressed child when my parents were stretched. I recall hours sitting by the side of a sibling who was suffering from migraines. My mother taught me how a regular gentle stroking action on the skin can help distract from pain, how to match breathing with someone who is panting in distress and gently slow my own down so they calm with me and slip into sleep. I learned how to box up my own feelings during first aid crises such as dislocations, car accidents, or bad lacerations so that I could be present and useful and then feel all my shock and distress later on. I learned how to talk myself through scary things, to remind myself of my values, to accept that some things are very hard to do, to reward myself afterwards with time to wind down. They get easier. They are absolutely easier to do than to lose someone and have to live with the knowledge that you bailed. We distance to try to protect ourselves, but unless we do a massive amount of running away and lying to ourselves, we hurt anyway. It hurts to be near someone in pain, and it hurts to let them down, and it hurts to lose them. If taking on a bit of pain and figuring out how to live with the knowledge that bad things happen to people who don’t deserve it helps to reduce their pain a little, how can you not? One day it will be you, realising the limits of your own power and control, and desperately needing other people to understand that your problems are not your fault. Or one day it will be someone you care about enough to want to stay with them, and it will sure help to have learned a few skills before then.

How to rebuild

I learn so much from books I love. I gave a talk again about Mental health and recovery to some students at Tafe the other day. Each time I do this I love it more. It’s such a treat to have the floor for a little while, to talk about freedom and loneliness and love – all the things we so rarely talk about in mental health, all those things so critical to our lives. I draw upon such a wide collection of information, psych textbooks, biographies, my own experiences and those of other people I’ve met or supported, and so often, fiction. Good writers understand life deeply and they write about it in ways that are just as useful in helping to answer questions about life and people.

I’ve just finished re-reading The Forgotten Beasts of Eld, by Patricia A. McKillip, one of my favourite authors. There’s a beautiful passage in it that resonated with me. I’ve heard a few people lately struggling with how to rebuild lives that have been taken apart by grief or illness. This is a gentle place to start:

I do not know anymore… I cannot care. It seems I have heard a dream, except that – no dream could hurt so deeply or be so endless. Maelga, I am like weary earth after the killing, hardening winter… I do not know if anything green and living will grow from me again.
Be gentle with yourself…Come with me tomorrow through the forest; we will gather black mushrooms and herbs that, crushed against the fingers, give a magic smell. You will feel the sun on your hair and the rich earth beneath your feet, and the fresh winds scented with the spice of snow…Be patient, as you must always be patient with new pale seeds buried in the dark ground. When you are stronger, you can begin to think again. But now is the time to feel.

 

Living with Rage

If you love someone who has been hurt, you have to learn how to live with rage.

I’m used to living with my own pain and anger these days. I know where it hurts, I know what to do on those days when it’s going to drown me, when I need to burn it all down.

Rose has been badly hurt at times. When I hold her, when I hear her stories, I swallow back my own feelings. I’m just present. She hurts, or is afraid, or hates herself. I hold on, I hold onto her, onto hope, onto grief, onto love.

Underneath this is rage. Touch her again and I will kill you. Make her cry and I’ll scream your world apart. Tell her again how worthless she is and you’ll inherit a firestorm. She’s not alone anymore. She’s no longer the only one, a place you can leave your frustration with the world, your own inadequacy and impotence, without consequence.

It builds, over time, I find.

I’ve been in relationships where friend or partner insisted that I do not get involved when they are harmed. Once someone had my boyfriend against a wall by their throat and he still would not allow me to intervene. I locked myself in the toilet and cried. I was 16.

I once inherited everyone in the world of my partner. They had access to me. People I would never have shared time with, never have let close, never have trusted, had access to me.

I once turned into a single entity with my partner. We had to operate as a unit in all things. What they submitted to I must submit to. What they hated and walked away from, I had to leave behind.

Then, I stood alone in a caravan, after all the years of trying so hard to be loveable and to make people feel safe around me, and I realised that I was in less pain now. It hurt less to be alone than to be the least important and valued member of a group that kicks downwards. I paid high prices for the illusion of belonging. I promised myself that I’d never let people treat me like that again. I’d rather be alone. I’d rather self destruct than let someone else do it to me.

Here I am, and this time I don’t inherit anyone. Respect is met with respect. Only those who love me get close to me. I don’t become a unit. I make my own choices about what I will suffer and why. I stand my own ground. And sometimes, I have to find ways to express rage, because I love her, because she deserves so much better.

And she deserves better than me too.

But how can you hate yourself when that’s hating someone she loves?

Sometimes I get angry with Rose. I thought I was hiding it well, discharging little bits in dark comments, sniping with tone or look. She called me out on it and the relief was huge. I’m not the only one watching to make sure things are fair and okay. It’s so much easier when we both watch. I’ve less power, less responsibility. I’m an equal. I saw a vision of myself as an abusive spouse, of where this could take us, and I cried bitterly. There was only one way out – painful honesty. Being real about the times we drive each other crazy. Being real about our limits. This was many months ago now, and I haven’t slipped since. Love and humility are a good match.

But I am finding that I’m losing my capacity to swallow my rage when she cries into my arms about something someone else has done. I know what it’s like to take it because you love someone. I know what it’s like to be forced to stand by. I don’t want to get into places I don’t belong. I don’t want to overshadow her choices. I don’t want to be someone else to manage. But I want everyone to know that she’s not alone. Those vile ones who took so much because once she was small and alone, watch where you leer. I loathe you more than you can understand. I restrain my violent impulses. I wake from nightmares and think of your faces, distorted with narcissistic self pity. Rage burns like fire in my bones.

Now, the wounds inflicted by those who lash out unthinkingly, who act out their petty frustrations and choose someone close to hand, someone they’re pretty sure will take it and won’t leave, how then do I hate those she loves? Where she forgives, I want to down the façade of unity. This time she has somewhere safe to run. This time there’s someone there to say ‘don’t hate yourself, you’re beautiful’. A place where your lies get washed away. I may not be there, I may not have my hand on your throat, but I’m watching. When she sobs into my lap about the names you call her, I’m listening. When you roll your eyes, raise your voice, curl your lip with that sneer, I’m clocking your contempt. When she swallows down an insult or doesn’t hear another assumption about how she’s just not trying hard enough and has it pretty easy I’m sharpening my teeth in the shadows. Don’t think things aren’t changing. Try that on me? Try that with her when I’m there? She has my heart, she carries it in her chest. I pay no allegiances beyond love, and I protect my heart.

It’s the simplest of things, to love those who love her, those who see what I see in her. To hate those who hurt her, her make her feel that she is somehow less, who use her as a place to ease the ache of their bones. And the rest – those of us who love but let her down? I’m watching you, just like I watch me. Make all the excuses in the world, but you had better mean it when you bow your head.

And me? I find it helps to have someone who doesn’t mind if you spit fire. The kinds of friends who just say ‘that’s messed up’ and don’t try to calm you down. A car is almost sound proof if you need somewhere to scream, or better yet, to scream along to music up loud. Break a few rules that won’t kill you. Direct the rage into making you look clearly at things you’d rather avoid. Clean up your act, clear out your own stressors. It’s okay to love, it’s okay to want to protect those you love. You can’t stop the fire but you can direct where it goes. Handle it with respect, with integrity. I read dark books and breathe turpentine. It passes, it eases. The scream fades in the air and a silence comes over, a space made for a different song.

She’s free, and I’m free, and we share pain and fury and grief and longing and fear back and forth between us like a complex knitting. She shares pain and I give her back rage. We are free and we are not free. We share terrible truths in the night. We see ourselves in each other’s hearts like dark mirrors. Love transforms these offerings, they are transmuted, purified by the process. An alchemy of broken hearts. At the end we are wounded, we are divine, we are human. We try to bring light. We try to bring peace. We lay down sword and tear and wing. We are restored to love.

Nightmares & changes

It’s been nightmare central around here lately. There’s changes and upheaval everywhere! The first step of the big move is happening, Rose is packing to move in with my sister, my close friend, and his daughter (my goddaughter Sophie)! This is heart stoppingly exciting, and very stressful for her. Like me, she’s been homeless more than once and is really afraid of making stupid decisions that might make that happen again. She’s also job hunting now that her ankle has mostly healed as she’s not being given shifts at her current casual job. So there’s plenty of fodder for rough nights there. As usual, some friends get it, some don’t. We’re both stressed and I’m doing my best to be supportive.

I did something a bit risky the other night when I came home shattered from a day at college and just zoned out on the net all evening… I read my way through a blog post about movies the writer had found really hard to watch or finish watching. I was gratified to see them list se7en, which I watched at 16 when my then partner stupidly or sadistically persuaded me it didn’t live up to the R18 rating and I’d enjoy it. I remember crawling into an empty room afterwards, huddling into a corner, pressing my face against the wall, and sobbing my heart out. I was a bit cautious about the article as movies easily set off nightmares for me, but as many of them were ones I’d heard of and which lose most of their disturbing impact in the description, such as Clockwork Orange, I read it anyway. Whoops.

The last several nights have been horrific. I’ve latched onto the idea of sadism and torture and murder and had a really rough time as my imagination has played out what I’ve read and added from my own bank of bad memories. It’s been really, really stressful. Hopefully I’ll let it go soon. What it has brought to my mind though, is that this used to be every day life for me. It’s astonishing that this has become something I deal with sometimes, not every night. Bit by bit, things change, wounds heal over. The hard work pays off. You can recover from PTSD.

Things are difficult at the moment. But it’s not death pangs, it’s the birthing of a new life. It’s a price I can pay. There’s moments I’m one breath away from a panic attack. There’s moments I’m so content, in such peace.

Poem – Curled into her arms

From my Oct 2013 journal

Curled into her arms I laugh with joy
and the sound of it delights me, like a bell, like bird song
clear and pure and unrehearsed,
without audience or self consciousness,
she holds me and my skin
trembles in the candlelight, there’s a space
here within our arms, when we are breast to breast, where
darkness does not fall, for a night
or an afternoon
or a golden morning, I am without a past
no touch but hers, no memories of pain or blood or loss
we are shameless.

We are kites,
flying over all those burdens,
beyond the dark obsession,
the memory intruding,
the nightmares from which we wake
screaming, the cult of survivors,
the platitudes of therapists, the way
the social workers think they are being enlightened when they tell
us in the mandatory child safe courses that children who are abused
will never recover, the screams that
sound in our deeps,
that wait beneath our words, that we can hear
when we place ear to breast:
None of it is real.

 None of it is a truth we have to live forever,
some days the knots slip
and the strings fly free, we dance
on the other side of darkness, we are
reborn, into innocence, love
begets freedom, phoenix from ashes
there is laughter in our bed
joy in our love.

When Multiplicity doesn’t protect us

For most of us who come to multiplicity by way of trauma such as abuse, neglect, bullying, or chronic pain, we’re familiar with the idea of multiplicity as a creative defence mechanism, something that helped us to survive. This can be a powerful re-framing of the idea of multiplicity as an illness, and very helpful! For some people it’s not all of the story. In some ways, multiplicity can make you more vulnerable to harm.

Many of us with multiplicity start out with no idea that we have parts, either we lose time due to amnesia, or experience the world through the hazy confusion of co consciousness. For many of us, the dissociation is highly functional, breaking up information and containing it in ways that help us to manage life, and allowing us to adapt simultaneously to a variety of different environments with very different social requirements. We have found a way of growing and navigating life that works for us, even if we are completely oblivious to it.

I’ve been talking lately about how powerful triggers and anchors can be for people with parts, but it needs to be said that they can also be abused. Even when the multiplicity is hidden or unknown, sometimes abusive people figure out by accident or instinct that certain things will keep a compliant part out, or trigger a part who discredits themselves to other people. They may not interprete these things using a ‘multiple’ framework and language, but they stumble across triggers and anchors and use them to their own ends. It’s worth mentioning that these factors are at play for people who don’t have parts too, in that all people are vulnerable to things like finding they are more submissive in certain settings, or more likely to act out when treated certain ways. But it can be devastating when dissociative barriers prevent a person from being able to access memories or skill sets to help them protect themselves. This can be the catastrophic downside to multiplicity as a protective mechanism.

Sometimes harm is done with no intent to harm. Triggers may be avoided or used unintentionally by family or friends who tell a person with parts that  ‘You’re not yourself today’ when they switch to a part their family doesn’t get along with. Sometimes others may learn to fear certain triggers such as what happens when the person gets drunk, or listens to certain music, and switches to a part who’s disoriented or aggressive. People with parts can find themselves under a constant subtle pressure to keep out the parts other people like, get along with, or find easy to manage. Other parts can spend many years trapped inside and be frozen at certain stages of development, never getting the chance to hone crucial social skills, tell their stories, use their talents, or connect empathically with other people. This can leave systems extremely uneven in their ability to function and their experience and expectations of the world. Systems can easily become polarised into the compliant parts and rebellious parts. Sometimes therapy can also play into this dynamic where the parts that the therapist relates to or finds easiest to get along with get to have key roles, while other parts are excluded, supressed, ‘fused’, ‘integrated’, put into lockdown, or convinced they are no longer needed and have no further role to play in life. (that’s not to suggest that these approaches are never useful or necessary)

Self awareness can make a huge difference for people with parts. Understanding that you have parts can be tremendously helpful in buffering the issues that multiples in a non-multiple world can have. Whether it’s someone saying that they like this artwork/outfit/meal better than that one – and inadvertently hurting the feelings of the part who worked on the less well received item, the frustration of losing skills and abilities as parts surface and go away again, or simply the phenomenal daily challenges posed by differences between parts as large as gender or sexual orientation, or as seemingly small as the part who does the grocery shopping love oranges and yoghurt and never buys any bread even though the rest of the parts love toast for breakfast and never eat oranges. Knowing why you have conversations in your head, 4 different opinions about almost everything, why you can be feeling happy, sad, bored, and curious all at the same time, or for that matter, hot, cold, scared, and sleepy… can help make a lot of sense of what has just been one more bizarre and confusing experience.

However, awareness alone is not sufficient for protection. Awareness of multiplicity can make you vulnerable through exposure to the massive stigma about these experiences. People’s relationships and jobs can be at risk if they are outed. There’s also a vulnerability in inheriting a whole stack of rigid ideas about what it means to multiple, for example when people are told that their systems must have a certain number or type of parts, or that they will inevitably remember horrific abuse, or that therapy is essential, long term, and extraordinarily painful. People can be vulnerable due to the language of symptoms where the number of parts, degree of dissociation, or level of incapacity is used as a measure for the severity of pain and worthiness of support of the person. People can also be vulnerable when multiple communities behave in alienating ways, such as being overly concerned with ‘faked DID’. Sometimes people find that their systems are overly fluid, or overly rigid and fixed in ways that make growth and adapting to new circumstances extremely difficult. The dissociation can limit the healing effect of positive life circumstances and loving relationships.

There can also be vulnerabilities in other people being aware of a person’s multiplicity. Sometimes abusive people use multiplicity against a person. This can happen with children who are being poorly treated, but adults can also be vulnerable. For example, people with parts who are in abusive relationships can have horrific experiences such as having a young part who has previously been abused being triggered during sex for the titillation of their partner. Multiplicity can be magnificent and protective, but it can also be devastatingly vulnerable. People with parts who find that their multiplicity is not effective to protect them from abuse or trauma may become extremely fluid, chaotic, poly-fragmented, or build massive numbers of parts. (this is not the only reason systems can function in these ways!) Systems that have experienced this kind of harm can be like labyrinths designed to confuse and hide essential information from an abuser or series of abusers who have discovered how to use the dissociation to their own advantage. Often this design also confuses therapists and the person with parts, and can frighten and overwhelm those who are seeking to understand, map, and make sense of themselves. Realising that confusion is the intention and that it serves a very important purpose can be a valuable first step in learning to love an inner labyrinth. Understanding triggers and anchors and knowing how to use them can be a powerful way of ensuring that abusive people cannot use them against you.

Known multiplicity can also be interpreted in ways that are harmful. For example, some people are put through traumatic exorcisms to get rid of parts who have been understood as spirits or demons. People with parts who have different gender identities have accessed trans support services that haven’t considered multiplicity as a possibility and have unintentionally suppressed and rejected all the parts of one gender. Multiplicity can be misdiagnosed and mistreated, for example if it’s seen as schizophrenia treatment may concentrate on keeping the person lucid and stopping the voices via medication – which can translate to tranquilising the person until they can’t hear their parts, and trying to prevent switching. Some people have accessed therapy that has interpreted and navigated their multiplicity in ways that they later come to believe was deeply harmful.

Multiplicity can also make you more vulnerable alienation, loneliness, and self hate. These are simply things that everyone without a peer group is vulnerable to. For people who don’t have parts, there’s often something strange and fascinating about the idea. What it can be difficult to understand is just how strange people without parts can seem to those of us who have them. This is our ‘normal’, and we can feel very alien and alone in the world. This can be compounded by the issue of masks. Many people wear social masks, the face they present to the world. People with parts are often thought to be wearing masks and then revealing their ‘true’ self when they switch. Pre diagnosis, everyone in my life had a different idea of who Sarah really was, and we ourselves couldn’t figure out who we ‘really’ were. Different people formed bonds with different parts, and most of my relationships were one-part bonds only. Switching caused chaos. I would invite friends over to visit, then switch later on and be confused and frustrated that people who didn’t seem to particularly like me were on my doorstep. They, on the other hand, experienced me as moody, unpredictable, and very strange. A freak. I also had big issues with connecting with other people’s buried parts – not the dissociative kind, but the kind we all have. For example, someone who presents themselves to the world as together and successful may have a hidden part that is lost, afraid, and steeped in grief. For some of us with parts, we are used to hearing and feeling things beneath the surface and we accidentally interact with and draw out the hidden parts of other people in ways they can find both deeply moving and intensely uncomfortable. Certainly not necessarily conducive to stable relationships!

It’s hard to be the only one of your kind. This is why bridging the Gap and finding points of connection and similarity common to all people can be so desperately important! It’s also why connections with peers and peer workers are crucial. Everyone needs a space in which the way they function in the world is ‘normal’ and for a few hours they don’t have to explain everything in full, because people get it. Being the only deaf person, the only kid with two Dads, the only scholarship student can be hard. Diverse communities help, and contact with other people who share your experiences also help. However multiple/multiple relationships can also be fraught, while there’s a common language and understanding, there’s also the complexity of two systems and a different type of relationship between each possible pair of parts who are out, as well as the loss and grief of forming connections with parts who go away or are supressed or overruled by other system members. Friendships between multiples can be wonderful but also fragile.

Multiplicity can be life saving. It can help people to contain, protect, and adapt. It can also be a difference that leaves people at greater risk of abuse, exploitation, and isolation. Here lies a tension that many of us peer workers with parts are struggling to engage. We need to hear that multiplicity can be healthy and useful, that there’s hope and that the illness model isn’t the only story that can be told. But it’s the vulnerability of multiplicity that drives us, the knowledge that people are struggling and suffering and being harmed that makes us want to speak out and create resources and healthy communities. The less stigma people encounter, the easier the path to healthy multiplicity is. (this path doesn’t exclude the possibility of integration or fusion) We’re often sold an idea of multiplicity that is about being broken, profoundly alienated from self, where the multiplicity is conflated with the trauma history in a way that makes it difficult to think creatively and respond with enthusiasm to the task of understanding, accepting, and making a wonderful life with yourselves. We don’t have to pretend that multiplicity is any easier than it is, nor do we have to choose only one way to understand it. Like anything in life, and like any kind of difference, there’s deep complexity and ambiguity in our experiences. We need the freedom to be able to engage those honestly, and we need opportunities to be able to combine our collective wisdom and help to reduce some of these vulnerabilities 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.

Using Anchors to manage Triggers

Anchor is a term I use to describe deliberately using a trigger to help me function. Triggers get talked about lot in various communities – those of us struggling with various forms of mental illness such as eating disorders, those of us working on recovering from trauma, and those of us with multiplicity. For an overview of triggers and a range of different suggestions about managing them, please start by reading Managing Triggers. This post has stories about using anchors to help manage anxiety, trauma issues, and other ‘mental health’ problems. Information about using anchors to manage things that trigger parts for people with multiplicity is coming in a couple of days.

Some of us just drown in triggers. Our world feels like a giant pinball machine where we are constantly ricocheting back and forth, never able to be still or to direct our own course. Some of us are not this chaotic, but we find our efforts to reach goals and build a good life get randomly capsized by triggers we can’t seem to get a grip on. Sometimes this sensitivity is something we can harness instead of trying to overcome. Sometimes the best way to mental health is to find and use the strength that’s hidden in the ‘weakness’ or vulnerability that’s overwhelming you. If being less reactive to triggers isn’t helping, maybe you can use your reactivity in a useful way. Sometimes the goal isn’t to stop feeling things, it’s to feel things that are helping you build your life.

That’s where anchors come into things. An anchor is a trigger you deliberately use or cultivate to help buffer you from the effects from other triggers. It’s strong enough to overwhelm the impact other triggers have on you.

Here is one of my old anchors:

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Yep, it’s a bag of stones. But not just any stones, MAGIC stones! No, actually, just stones. Ahem. This started when a stressed younger part in my system stole a stone from a potted plant at our shrink’s office. It was something she could look at later, to remind herself of good conversations and a sense of acceptance that we experienced in that place when they seemed unreal and distant. It was a way of finding some Object Constancy. A few other stones were added later, such as one from the garden of the shelter we stayed at the first time we were homeless, as a reminder that we’d survived. They could be carried everywhere, tucked easily in a pocket or the bottom of a bag. They were tactile and comfortable to hold or rub with fingers. And they triggered something, they evoked a strong sense of connection to people, places, and times in my life. When I felt empty and hopeless, that sense of freefalling and disconnection, these anchors reminded me that all those things had really happened. They helped to connect me to my own life story.

I often use perfume as an anchor to literately and deliberately overwhelm my own hypersensitivity to the smell of strangers, which is a strong anxiety trigger for me. I’ve written about this before as part of ways to help manage Using Public Transport. Heightened senses can play a huge role in our sensitivity to triggers, and it’s common for people who have been traumatised or who have PTSD to find that certain senses seem to always be straining, very alert and very receptive. Instead of getting caught in the chronic hyperarousal, with all the frustration and irritability that a sense on high alert all the time can bring, why not see it as a superpower and use it to your advantage? For years the smell and proximity of strangers made public transport, crowds, shopping centres, and concerts almost impossible for me. I spent a long time trying to dull this useless, hypersensitive awareness, trying to make it normal again. I ricocheted between dissociative numbness and agonising sensitivity, flooded with sensation.

I finally started to realise that problem might also be the solution. Scents evoke memory in a powerful way. I once smelled a perfume that took me right back to my childhood, playing in the garden, so powerfully it took my breath away. I think my beloved elderly neighbour must have worn it. I have a bottle of it now myself. It’s very precious to me. When I smell it, I feel loved, and beautiful, and carefree. I started to explore scents. I bought an oil burner, essential oils, and books on how to create blends. I joined forums about fragrances, and discovered a whole world of people for whom scent is a complex ecstasy, people who visited perfume houses, who reminisced about perfumes now unavailable, who . I bought samples of strange perfumes from eBay and discovered that a heightened sense can be a source of delight. I grew fragrant plants in my garden and loved the way I could still smell them hours after brushing past them. I learned how to wear perfume as an anchor, to lift my wrist to my face when the smell of someone very afraid, when the odour of hospital cleaner, when the tang of blood overwhelmed me. Any Sensory Supports can function as anchors if you respond to them.

As a young person struggling in school, I used to carry my journal everywhere. It was one of my first, most successful Grounding Techniques, a place I could honestly express all the intensity that burned in me. I wrote myself into being, wrote myself through pain, back from the edge of self destruction, asked myselves questions and pondered the answers. Tried to make sense of my world. The actual journal itself became an anchor, a physical representation of all that writing meant to me. I could walk back into school with the weight of it in my bag. I held it to my chest like a shield. I used it as Artificial Skin when the world was unbearable.

When struggling with the overwhelming urge to self harm, one of my approaches is the Ink not Blood idea. In very bad times I have painted ink wounds on my arm and bandaged them, and that bandage has become an anchor, something to touch and hold, for fingers to worry at, a physical reminder of pain and of loving choices made when in pain. It is comforting in the way that a healing and tended wound can be comforting for some of us who struggle with self harm.

When I’ve written about managing chronic suicidal feelings, I’ve talked about things I use as talismans against death, things that keep me holding on.

They are my talismans against the dark, and they fail when the darkness is great. I hold one until its light goes out, then I put it back and take out another. The power of feeling suicidal is that it strips meaning from that which means most to us.

Some of these talismans are ideas or experiences or quotes or relationships. All of them trigger something in me, some courage, or hope, or acceptance. Some of them are physical things that could be understood as anchors. They are things that weight my soul in life, that help keep my boat here when the tide is pulling me over the edge of the world. The stub from a concert ticket. The peace lily my friend bequeathed me after she died. A poem on my wrist, or a Ray Bradbury book. A bag of stones. They are things that keep a good, healing story about my life alive for me.

Anchors are about taking your sensitivity to triggers and learning to use it, to hone it like an instrument and play beautiful music with it. They are not always the answer, they are not the only way to manage triggers, and they don’t always work. But they can be beautiful, turning what has been a curse into a blessing. Sometimes we live best when we embrace what it is to be human, to be vulnerable and moved, full of memory and feeling. If the only song triggers ever play in your life is the one of suffering, perhaps it’s time for some new music.

For more information about using triggers to support your mental health if you are multiple, go to Using Anchors to Manage Triggers – Multiplicity.

Awesome Quote – Self Care

Sometimes someone else says something to me that just clicks. Like a bell ringing deep in my chest, there’s a sense of connection to something I needed to hear. It will often stay with me for days, sometimes even years, and get woven into my complex personal philosophy of life, or trauma recovery, or community building, or whatever other framework I’m currently working on.

This one was by a friend and fellow peer worker with DID, who like me works a lot with other multiples. She was sharing how sometimes people get frustrated that she is able to function in the world – she has a home and a long term relationship and a job and all those things that both give and require stability. For some of us with DID, these can seem like impossible dreams. She said to me one of the things she tells them, if it’s appropriate is:

I can do what I do, because I spend a minimum of 3 hours a day on self care. When you do 3 hours of self care a day, you too will be able to do these things.

This resonated.

On one level, both she and I know it’s not this simple. Bad luck, abusive relationships, sickness, homelessness, and so on can all strip any person of the capacity to work full time or do many other things that need a lot of sustained energy and emotional stability. There’s more to recovery than self care, there’s also things like community, opportunities, and a decent dose of luck. Self care, like self love, often needs to be done in a context – we are better at loving ourselves when we are loved by others, and when we see others loving themselves too. Sometimes the first goal of self care is to find or create some spaces where we can care for ourselves without being attacked or belittled.

But on another level, this idea about self care boils down a whole stack of complex concepts to something incredibly simple. Are you getting what you need to function? Are you sabotaging yourself? Are you neglecting yourself? Are you trying to run on empty? Do you even know what you need? Are you waiting for someone else to do it? Do you wait until you crash and burn before being caring? Do you look after yourself, with your specific and unique needs, a lot, every single day? How do you expect to function if you don’t?

It was a powerful reminder. I have big dreams. I have big expectations of myself. I need to match them with a powerful commitment to looking after myself. That can’t be self care that would work for someone else. It can’t be punitive, traumatising, or harsh. It needs to genuinely be the unique things that support me. The kind of care and devotion I have learned to give to my pets and garden, applied to me. It may not be easy, but on one level it’s stunningly simple.

Nurturing

My garden is blooming and beautiful. I love it so much. A number of years ago, when I was extremely unwell with severe dissociation, I read the book Women Who Run With The Wolves, which I loved. One of the suggestions was to grow things, to touch earth and become accustomed to the cycles of nature, of seasons, of life and death, of the needs of things that grow. Since that time, I’ve always had a garden, even if it was only some jonquils in a pot. Many plants have a special link for me, remind me of someone I have loved, or a time in my life, or a dream I’ve had. I bought some of these plants last year to celebrate the news that it seems I have intact fertility and will hopefully be able to have a child.
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When I started growing things, I found myself slowly learning things I had forgotten in awful circumstances. In the grips of profound self hate, nurturing my plants was a small but powerful reminder that things grow best when they are loved rather than starved.

There’s a certain stereotype of the young person who has escaped from an abusive background, who find themselves something to nurture – a house full of cats, a volunteer role at the local nursing home, or a garden full of plants to tend. Somewhere in that act, I gradually began to learn how to tend for myself. It’s a process I’ve seen many people go through, people with such amazing qualities of generosity, compassion, tenderness, or wisdom, who have not yet learned how to treat themselves with this kindness, but who pour them out on others in a tangle of love and need and hope. For others they’ve yet to learn how to nurture, how to help something to live, to watch for signs of stress, to learn the language of need for another. They have yet to learn how to be still and listen, the attentiveness of love.

I remember the very first time I grew plants from seed, what a miracle it seemed to me. How magic that from these small inert bits of brown matter, green life springs. The incredible fertility of life, that from one seed, comes a plant that creates many many seeds. That all things die. That some things that I thought would grow, under my care, will not, and others that are thought to be difficult grow readily. Despite all knowledge there is mystery, even in this. Gardens reward attention, knowledge, and skill; with beauty and abundance. These observations are so simple and yet I find them deeply moving. Standing with bare feet on earth, in rain, wind on my skin, hands in soil, I find metaphors for the tending of my soul, of my family and friends, my world.
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I find a sense of peace and connection in my garden. I hope you have or find places in your life that speak to you also.

Thoughts about peer work and DID and community

It is incredibly hot here again. It’s currently 42.3C and I feel like my face is melting. Hot weather and I do not get along since I developed fibromyalgia. So I’m home, in front of my little portable air con, preparing for my drive off to Mifsa to give the talk Supporting Someone in a Dissociative Crisis this evening. Apparently I decided the best way to prepare for this would be to spend the day on the net getting into big conversations with people.

I’m getting frustrated again that I can’t blog as much as I want to. I have so many things I want to share, my list of posts to write goes into several pages. I’m still hoping to find time to blog about all the great talks I got to hear from at the World Hearing Voices Congress last month. And I’m often in amazing conversations, taking down quotes to write about later but so rarely get to come back to them. I think part of the problem is that often the topics I’m wanting to write about are big ones – suicide, multiplicity, sexuality and so on – and I really want to do a decent job. Sometimes I let myself just spiel and post, but often, especially if it’s a post that I’m hoping will have useful information in it instead of just a bit of a glimpse into my own thoughts and life – it’s not something I can write in a moment. I need to get several parts to read over it, I try and edit it from very different perspectives, and I try and include links to other information or resources when I’ve found them. That’s not a short process. I wish it was. Or I wish I was paid for writing them so I could more easily carve out time each week for those kinds of posts. Which I guess kind of brings me back to my idea about writing a book…

What do you think? A book is a great thing. You can borrow it from a library or friend. You can pick it up and put it down and carry it around with you. You can underline bits and cross things out and write your own thoughts in the margins. But a blog is good too – it’s always free, especially if you use the net at the local cafe or library. You can even contact the author or write comments underneath. It’s a growing, evolving process, with small bites of information. I like the format, it has a lot going for it.

So, today I was talking online with a friend about internet safety, and scams, and how important it is for people to be aware, and I thought to myself I keep hearing this word awareness. I hear it all the time around the ‘days’ we have like the International Day for the Elimination of Violence against Women or raising awareness about MS, or how to talk with people in wheelchairs without driving them nuts. I have a whole stack of physical and psychiatric stuff going on, and my awesome friends likewise, I still have no hope of remembering everything I’m supposed to be aware of. I find myself wondering if a different approach wouldn’t be more helpful – like a ‘how to engage stuff you don’t know much about in a way that doesn’t drive people crazy’ approach. How to generally be a helpful person open to hearing new things you hadn’t considered instead of trying to be aware of every illness, condition, social concern, and so on.

Isn’t this partly what we’re doing in spaces like Hearing Voices groups – the facilitators don’t have to understand everyone’s different perspective or experience, they are just trying to hold a safe respectful space where everyone can speak for themselves and engage each other… maybe we can support better and more respectful ways of engaging with things we haven’t personally experienced that are easier than massive lists of things to be aware of? Even as someone working to raise awareness of mental health experiences such as multiplicity I think this. Maybe if we work together to create a model for engaging with our diverse communities we can relieve some of the burden of anxiety so many of us feel when we are aware we lack awareness and wind up not engaging or falling over our own feet with stress worrying that we’re being unintentionally wildly offensive or upsetting.

On that note… I read a blog post today where a person with DID is expressing deep frustration with some current ‘awareness raising’ stuff going on over in the UK that they feel falls so far short of the mark that it’s actually worse than the usual ignorance and myths about DID. I felt that Bourbon made some really good points about issues with sensationalism in the media, and misconceptions about how parts can function and overlap. I recommend going over to have a read of it – What is DID? (a response to media campaigns). When Bourbon started talking about their (gender neutral as I’m not sure of pronoun preference) perception of what DID actually is, I was concerned. Here’s a brief quote from the end of the article:

In reality, those with DID feel far from special and intruiging.  A life with DID is actually spent hiding away, keeping yourself as small as possible so you don’t get noticed.  There is often so much fear and pain and confusion coursing around you and the whole system it can feel like you are paralysed.  Of course there are teeny tiny moments when life with DID doesn’t feel THAT BAD, but that can only really be fully appreciated when you take note of the alternative extreme lows.

This is where I feel deeply concerned. I don’t know Bourbon, I’ve read a little of their blog today, some of the earlier posts have been made private but they’ve been writing for awhile and I can see a whole lot of work going into being open and supportive about a life with DID and all the challenges that can pose. It’s always difficult to try and respond as respectfully as possible to someone who’s clearly upset about something that really hurts them, while disagreeing with them. We had a bit of a conversation in the comments before they closed them for a break (which is brilliant, and something I wish I’d thought of with this blog instead of closing the comments entirely for the first 2 years. Although sadly that meant it ate my last reply which was quite long and thought through, sigh). I thought I’d share my thoughts about this here too, because there are some amazing people, like Bourbon, out on the net and in their communities, all trying to raise awareness and share information. And yet so often we make each other uncomfortable in some way, or somehow our stories obscure other people’s stories that are very different. It’s not an easy situation, there’s a lot of effort and goodwill and yet the community as a whole can quickly fracture instead of pulling together.

I was going to just pull a few quotes from our conversation in the comments, but then it seemed like that could be picking and choosing to make things fit my perspective best. So I thought I’d quote the lot instead, although I haven’t run that part Bourbon (as they’ve currently closed the comments and I have no way of contacting them). The comments and blog post are both public and I’ve linked to it so I don’t think that will be a concern. Correct me if I’ve got that wrong!

Sarah:

I get that you are really pissed off and feeling unheard but I was uncomfortable with some of the ways you were presenting DID too. I think for me (as someone with DID) one of the ones I wanted to speak to is your statement that having DID is primarily about suffering, with only tiny moments of relief. That really distresses me. I absolutely get that pain and distress is a HUGE amount of the picture for many, many people, but that doesn’t speak to my experience. I suffer when I’ve been hurt and traumatised, and I’m in terrible pain when things have gone appalling wrong in my life with things like homelessness, but it’s not my DID that makes me suffer. That’s a subtle difference but for me, an important one. When anguish and agony are presented as normal – even inevitable and inescapable daily realities for everyone with DID, that worries me. I think we accidentally set people up for much worse experiences when they don’t hear other stories and ways of thinking about their situation. When we expect suffering we miss opportunities for joy and hope and delight and wonder. I don’t think it has to be this way – and that certainly hasn’t been the story of my own life 

Bourbon:

I’m really pleased for you that your DID doesn’t cause great suffering in your life now and I am sorry that you feel distressed by me pointing out that a lot of DID is pain and confusion. Don’t think I don’t delight in the fact that one of my littles experiences true joy for half an hour when with my therapist, or I am not appreciative of the fact that I have an alter who reacts quickly to external danger from other people. But at the moment, whilst I am engaging in heavy duty trauma therapy, this is not what my DID is primarily about. I experience joy in my life that has nothing to do with my DID – and that is what is important for me. Life outside of a disorder is important to me.

I take your point that educating people with all the negatives/realities of DID MAY set people up for worse experiences in their own lives – but what I am not going to do is exaggerate and ‘liven up’ the positives in the eye of the public at the expense of showing what DID is like for a lot of sufferers. Like I said, there are little moments when life with DID doesn’t feel that bad; and maybe I could have actually given some examples, like I have done above, but that is as far as it goes.

Reality with DID is tough. Yes our attitude can soften the edges (because even a little having fun in therapy can be viewed as a negative to the disorder – who actually WANTS to be in a 26 year old body but behaving like a 5 year old?) but the public doesn’t need to be educated about our attitude. They need to be educated about the facts, the symptoms, the reality. Attitude is a side-line; not a focus.

Sarah:

What you’ve said here is that you’re doing heavy duty trauma work and that is painful as all out. I don’t see that as being about the DID, if you’d been awfully traumatised and didn’t have DID you would still be hurting like hell and having some horrible therapy sessions. For me they are separate things – the experience of being multiple and the experience of having been chronically traumatised. While they can be deeply connected it’s not the DID that is hurting. Reality as someone who has been deeply hurt is tough. That doesn’t haven’t to be reality with DID. Yes there’s confusion and shame and challenges, I’m really not making light of that. But then, there is for all life, however we experience it. Challenges like how to feel alive, how to connect with communities, how to learn more about who we are, these are universal quests and struggles, experienced as much by people with deafness, people from backgrounds with money and power, people whose babies die young, as they are for people with DID – and for people who used to have DID. The specific challenges might be unique but the call to find ways to live well with others and ourselves is the same. So I don’t see this as ‘just’ an attitude. It’s an essential aspect of what it is to be human. When we tell ourselves that suffering is our lot we lose the capacity to engage life in any other way. When we hold up as examples other people who share experiences with us and write off their lives as being primarily about pain we shut down other ways our communities can live.

Years ago, when I was early in the stages of diagnosis, deeply distressed and struggling to find a therapist to work with, I called Lifeline one night. I was in the early stages of working with a new therapist who’s approach I was finding deeply distressing. By luck I spoke with this guy who actually knew something about DID. He encouraged and supported me while I wrestled with this dilemma – keep working with a therapist who was approaching DID in a way that felt completely wrong for me, or go against all the advice I’d read about how you MUST have therapy to heal from DID and walk away knowing it might be months or years before I found another one? He said something to me that has always stayed with me “Just because you’re split, doesn’t mean they’re (other people) whole. You can choose to engage this experience as an illness, or you can go on a grand adventure of self discovery.” (which will of course sometimes also be painful and confronting and so on, like all adventures)

Being invited to think about DID in a different way has been life saving for me, in that I have a life with DID. I don’t think of myself as disordered because I have parts. I don’t think of my parts as symptoms of my illness, which made me fear and resent them. I struggle and suffer at times. I also have amazing and wonderful experiences at times. Playing co-consciously with a 5 year old part was a profoundly moving moment for me, because I’ve spent years getting over my sense of shame and humiliation about having a 5 year old part. So much of what we with DID are wrestling with are things that everyone who has been hurt are wrestling with, and things that everyone who is trying to be human are wrestling with. We don’t have to sell people an idea about DID that is about sickness and anguish, not to each other and not to the public.

Bourbon:

I understand the distinction you are making. I really do. I first started blogging on here saying that I was going to refuse to call it dissociative identity disorder because it isn’t a disorder. But since realising the turmoil me and my system are in day to day then I realise how much of a disorder it is. It seems to me your experience of multiplicity isn’t just about trauma. Fantastic. You’ve built a life outside of that. But my DID is all about trauma. We are riddled with it. My system operates by way of abuse. What I mean by that is abuse is still going on, internally because that is what we grew up believing was the norm. It sounds like you are so much further along your healing that you have made peace with your past and become close to your system. I’m young and only two years into my diagnosis. But I am in therapy with an excellent therapist who has been working with DID for twenty years and one who has written books on the subject. So maybe I will find a way to live with DID in joy like you have. Or maybe I will integrate and be cured of this disorder. Who knows where life will take us? Personally, I hope I’m integrated. But we all know, well all DID’ers do, that is a choice.

I appreciate your words. You are very uplifting and hopeful and maybe this post does need a bit of that so thank you for dropping some with us. It hasn’t gone to waste.

Moral of the story: there are positives and negatives to everything (however large or slight) and BOTH need to be expressed if you are wanting to educate the public about DID to give a fair picture.

This is such a thought provoking conversation for me and something I’ve given a lot of consideration to over the years. I really appreciated the way Bourbon heard me out and didn’t get defensive. I have such respect for that willingness to engage with opinions and difference. It’s not easy, especially when you’re already feeling hurt and unheard yourself. I see so much divisiveness in so many communities I care about. I’m coming to the conclusion that it is such a huge challenge to create and be part of healthy communities with diverse members because most of us have never experienced that or even seen it before. Many of the people I come across in my peer work are being abused or belittled by their communities, they are at the bottom of their family and friend social heirachies, low ranking at work or unable to work, isolated from people like themselves and suffering from the impacts of all of these things such as low self esteem, depression, and self hate – all of which are seen as personal deficits by the mental health system rather that social issues. I’m reading an amazing book The Still Point of the Turning World, written by Emily Rapp about her experiences having a terminally ill young child. She talks about her rage at being dehumanised and having her experience, and her son, treated as a case study, as an example of the worst possible thing that can happen to someone, something to make other people feel better about their own lives. She talks about life as a Dragon Mother, her description of the unique agony and priviledge of loving and caring for a dying child. And I think again of The Gap, of how many gaps there are. Of a world of people who are living and hurting, who are divided rather than united by those most human of experiences – pain, suffering, loss, loneliness. 

Then I think about how fractious so many of communities of hurting people are. Love and acceptance start to be treated as limited resources that everyone’s in competition over. The division of people into the camps – people with problems/people who can help – dehumaises both groups as the helpers burn out and the ones with ‘problems’ never have the opportunity to recognise their own gifts of love and compassion. I see a lot of these kind of fractured communities, corporations that work on what is effectively a class structure – with separate facilities, entrances, work and rest areas for each level of client/volunteer/worker/management/upper management and strict rules about how each class is to engage those ‘above or below’ their own. I am at times contacted by hurt and angry members of other DID support groups who want to inform me that a certain member has been removed from their network for ‘faking’ DID or not having ‘real’ DID. I see a lot of hurt, angry, lonely people desperate for someone to reach out to them who alienate everyone who tries to. I keep coming back to an idea – that those of us who are alienated, alienate. Having experienced abusive communities, we reject new ones, or we rebuild new ones with the same imbalances and flaws we’re familiar with and just exchange the roles. It’s such a risk for everyone who feels hurt and disconnected, including me.

Then I think about the challenges of the entire issue of how we as a culture engage with diversity and disability. I’ve written before about whether mental illness is a disability. I drew upon two other communities to explore some of my ideas – that of the Deaf community and that Autie/Aspie communities. I have had brushes but not extensive contact with either groups so my ideas may be uninformed and ignorant – but that’s partly my point – the impressions those of us who have little contact with the communities develop are based party on the most vocal peers who have engagement with the media (and partly on the media itself but that’s another post). So, in this conversation with Bourbon, am I the equivalent of a person with a disability who is not suffering because of it, accidentally drowning out the voice of a more vulnerable person who IS suffering and who desperately needs better supports and resources?

I’ve wrestled with many of these things on this blog – the tension in trying to be seen as a whole person in The Disability Tango. Challenging conventional and sanitised stories of recovery in Recovery is not a one-way street. The risks and usefulness of using labels to describe behaviour and vulnerabilities in Labels – helpful or harmful? About my ambivalence about the way mental illness tangles good and bad experiences together and the way mental health is presented as being ‘normal’ in Mental health needs better PR. I’ve also done my own getting really angry about the limitations of diagnosis and how DID is understood and presented such as Introducing DID brochure and unplanned rant.

So, what is my role? What is a responsible way to present DID? How do I make sure that the voice I have is being put the best possible use? How do we build diversity into the stories we tell about conditions and experiences? I do a few things already – such as whenever I give a talk about DID or dissociation or hearing voices (and so on, or facilitate a group) I love to present with another peer worker whenever I can, and for preference I like to choose someone who has a really different experience from me. I presented at TheMHS with Cary and we deliberately wrote our ‘my story’ experiences to highlight the ways in which we were different (eg. I’ve never been in psych hospital, Cary has had many stays; I find gardening grounding and hate the gym, Cary kills plants by being in the same room with them and runs every morning almost without fail even if she’s injured). I try to write a ‘People with DID are not all the same’ paragraph into every resource I create and explore some of the common differences to reduce the impact that the way my system works has on people’s idea of what ‘normal’ DID is. I love to do as much community consultation as possible when I’m working because so many other people have experiences or ideas I would never have thought of and I learn so much all the time. So that’s a start.

To this other topic – does me talking about DID as if it isn’t all about suffering help or harm other people with DID? As far as my own life goes – it just has to be authentic. I can’t pick an ideal ‘outcome’ and try to pretend my life story speaks to it, anymore than it’s fair to try and force an exhausted and overwhelmed peer worker to try and give messages of hope they can’t currently believe in. All we really have is honesty, as much of it as we are willing to share with each other. And for me, DID is a disability in that it is something about me that is different, for which I need care and support and room to function to the best the way I do. This is a little bit like the difference between creating prosthetic legs that are designed to look as normal as possible and help people fit in and help other people feel comfortable, and designing ones that look and function very differently to a human leg, but allow the person to run marathons. And that’s still coming from a DID is a deficit caused by trauma – model, which doesn’t fit everyone’s experience.

There is profound suffering for many, many people who have DID. The level of stigma for this experience is beyond anything else I have seen in mental health. When a psychologist was in the year long process of diagnosing me, I spent most of that time arguing and trying to convince him I had Borderline Personality Disorder instead. For any of us who know about the extreme prejudice which which many people with BPD and their families are treated by the Mental Health system, this should shock you. I’ve written a little more about this over at the DI page Why are we needed? My people, people like me, are in terrible pain, suffering appalling stigma and discrimination, living in secrecy and fear. Largely ignored and unacknowledged by the wider community and mental health system, people are stuck, in pain, and dying.

So why don’t I equate DID with this suffering? How can I be so indifferent to it? Because correlation is not causation. I do not believe that this anguish is a necessary result of having DID, while at the same time I acknowledge that it is the painful lived experience of many people. A massive amount of this pain is about trauma. Another massive amount of is about stigma and disconnection from community. And the last huge whack of it is about DID systems that are modelled upon dysfunctional communities. This is where my work comes in especially, because the framework we are currently provided to understand DID is, in my opinion, dangerously limited. People are being told they ‘must’ have an inner self helper. People are being told they CANNOT get ‘better’ without 5 years minimum of weekly therapy (and that if they can’t get it they are just screwed). People are being told that having parts means they are sick, that hearing voices means they are sick, that wellness is about being ‘normal’. People are being told that dissociation cannot be cured. People are being told that DID is all about suffering.

We know that there are issues with people living to their labels in DID as in other things. I don’t believe that DID is inherently about suffering, and I don’t believe that people are well served when this is the story we tell. The DID story is deeply tangled with that of suffering but I don’t believe that collapsing the two together helps people. I was utterly incapacitated by these ideas when I was newly diagnosed. I started off very gung-ho once I accepted the diagnosis – I was going to be one of those rare, wonderful patients who did everything right and progressed through therapy at a spectacular rate and was integrated and back studying my psychology degree in a year. I was terrified that most of the DID autobiographies I read ended with people still in a massive amount of pain and unable to work or keep their primary relationships etc. I was tied up in knots by the insistence on a ‘host’ or ‘primary’ or ‘core’ person and the way parts kept getting shuffled into a hierarchy when that felt so so wrong for us. I was scared and alone. I really wished I could talk to other people who had the same things going on, even better to talk to someone else who was maybe a bit further along than I was, maybe a little less scared. I decided to out myself and become a peer worker so that I could try and be that person for other people, to humanise and reduce fear – others’ fear of us, and our fear of ourselves. To some extent, choices I made such as refusing to give out a system map or let anyone know our individual part names was because we now perceived that the standard approach to DID was now the greatest threat to having the kind of life we wanted to lead. Where once that threat was experiences of abuse, it was now the treatment. We grasped onto the lifeline guy’s phrase – ‘A Grand Adventure of Self Discovery’ and used it to navigate every ‘treatment’ offered to us. When ‘trauma recovery’ treatment was more agonising than the original trauma we walked away. When ‘mental health’ was presented as a greyland of limited emotional range and hyprocritical superiority over all the other ‘sick people’ we built our own ideas about health and recovery. When DID was presented as the worst of all possible disorders, impossible to navigate independently, needing extensive treatment from experts, a humiliating, painful, and protracted process of recovery, we asked ourselves is this how we want to spend the next ten years of our life?

What I keep seeing is that when people are supported to find their own paths, instead of being fit into boxes, amazing things happen. I see people who get to have experiences of healthy communities and model their internal communities on those principles – love, fairness, diversity, respect – and these people are not suffering because of their DID. I keep seeing that when people are exposed to ideas about freedom and joy and community, where they are not alone any more, healing and hope can occur. I think that it is extremely important to make room for people who find the psychological model that DID is a mental illness and that they suffer from a disorder, useful and helpful to them. But there are so many people who don’t find that approach helpful, who get hampered by the illness model and can’t find hope or joy or relief from pain when their parts are presented as symptoms of a sickness, that I can’t use this framework in my peer work. Like telling people who’ve had two psychotic episodes they have ‘schizohprenia’ and will suffer from it for the rest of their lives – it’s not only inaccurate it’s such a disservice to the person.

If we struggle against the effects of stigma, if we build better resources and community responses to trauma, if we try to prevent abuse, if we create and model healthy inner and outer communities; I do not believe suffering has to be the lot for people with parts, or that not having parts any more is the only way to not be in pain. Pain is part of our lives, and how we understand it, the stories we tell about it, and the way we respond to pain as communities make all the difference in whether that pain consumes and destroys people, or can become one aspect of lives that are still rich, deep, meaningful, and connected. The same goes for disability, for illness, for trauma, for DID, for anything and everything that opens a Gap and challenges us to find ways of bridging it.

And now I have to run off and give a talk Supporting Someone in a Dissociative Crisis. Wish me luck. 🙂

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

Safe Sex 7 – Find Freedom

Explicit but not graphic content.

Part of what helps to make sex emotionally safer is freedom. Most of us have a whole host of beliefs about sex that limit, bind, and cause us pain. We live in cages in our minds about sex, partly because of terrible experiences and partly because of cultural myths. There’s a lot of ideas that limit us – from the simplest linking of the experiences of sex and pain – experiences that one always leads to the other; to more complex constructs that bind and confuse us.

I was in a conversation once where someone expressed discouragement about differences between what they and their partner liked. Their idea was that keeping things ‘fair’ meant that both partners got exactly the same experiences during sex. So, if I got a massage so I have to give my partner one. This tit-for-tat system is an unnecessary burden. The goal is intimacy and pleasure for both! If what each partner likes is different there’s no benefit in inflicting something on the one who doesn’t like it! If I love a foot rub but my partner has madly ticklish feet then it’s just silly to feel obligated to give them a foot rub back. It’s not just okay to like different things, it’s quite common! And to like different things at different times – tonight I don’t feel like this, I’d prefer that, and so on. It doesn’t really matter what form sex takes or how different you both are in what makes you feel pleasure and closeness, as long as you are both feeling it.

Another example of freedom being important to emotionally safer sex; I was talking about sexuality and was surprised when a woman told me that she found women attractive and appealing but couldn’t be a ‘genuine’ lesbian because the idea of oral sex with a woman disturbed her. I do not believe this is the case. Sexuality is about who you want to have sex with, it doesn’t say anything about what you do and don’t like during sex. Misconceptions like this create cages that bind people. Our culture weaves different ideas in together to create a big knotted mess that people get tangled in. Lots of lesbians like oral sex. That doesn’t mean you have to, to be a lesbian! Some gay men are brilliant in the kitchen, that doesn’t mean all little boys with an interest in cooking are going to be gay. It’s fun to look at the clusters of experiences that commonly occur – gay men and fashion! But it’s harmful when these become the ‘norm’ and all other experiences get overshadowed. As a young person I knew a kid who was bullied a lot because he was the only straight guy in his drama troupe. Clusters become stereotypes, and people get trapped by them whether inside them or outside them.

The politics of sexuality is highly charged for many people. The language around sexual orientation, gender identity, the politics of sex and morality are relatively new to mainstream Western culture, and in many places are used as distinct categories rather than descriptive language. Language as a general rule can be very helpful as a shorthand way of explaining who we are and perhaps most importantly, if someone might be interested in you. 😉 Categories, where people get stuck in boxes and stereotyped, are often very destructive. There’s a cute ‘Gingerbread Person’ poster where Sam Killerman has worked to untangle these categories back into descriptive language – it’s not perfect, but I do love it as a starting point for seeing gender identity, gender expression, sexual orientation and so on as separate concepts that differ from person to person!

People can become scared of ‘what things mean’ about sex; if I like this does it mean I’m gay/straight/kinky/whatever? It can often help to realise that you are allowed to define yourself. Liking or not liking certain sexual acts does not determine what people or genders you like to do them with! Sometimes the political fighting about rights can chew up vulnerable people who are in the middle in a way that disturbs me. Nobody should be forcing or coercing you to publicly identify or privately see yourself in a way you find distressing, with the exception of holding people to account for ethical behaviour. This is incredibly important to me! On a personal scale this push to put people into boxes limits people’s ability to engage and accept their own sexual desires and lives because of fear of what it might all mean for them. On a public scale, bullying, isolation, and intense distress can result from our tendency to categorize people and assume that we know better than they do what is going on inside them. It’s a form of diagnosis and holds about as much water for me in social settings as it does in mental health.

In Dead Boys Can’t Dance , Dorais and Lajeunesse explore issues of homosexuality, stigma, and suicide. What I was most interested by is that the group of boys at highest risk of suicide is those who were straight, but designated as gay by their peers. These boys suffer all the stigma, rejection, and isolation of being seen as gay, and do not identify with the gay resources and communities who might provide some refuge from these experiences. The process of mis-identifying each other might be less distressing if such stigma were not attached to some of the labels, but I’d still argue that not being seen for who we believe we are, not being believed about who we believe we are hurt us. If there’s anything we’ve learned from the past 100 years of the gay rights movement surely it’s that this harms people?

Another area in which freedom can help us to make sex emotionally safer, is freedom from the cultural beliefs of what it is to love another person. We tend to value our relationships in terms of duration. Only those romantic partnerships that last until the death of one partner are ‘true love’. Only sex between partners in love can be ‘good sex’. Or alternatively – marriage (or monogamy) kills sex, and good sex can only be had between strangers, or casual partners. Many communities that prefer and normalise particular kinds of relationships and sex consider that only their kind of sex is ‘good sex’. (think of the sexual norms of polygamous Mormon communities, and those of the BDSM communities). People are highly diverse! Good sex for one person is another persons dullest evening ever, or even a nightmare. Relationships that had great sex still may not last forever, because life is challenging and people grow and change, and relationships need lots of skills as well as love to thrive. We don’t have to take on these ideas ourselves. Sexual plasticity is an amazing idea the scientific community is exploring. (see The Brain that Changes Itself by Norman Doidge) Briefly put, plasticity refers to our malleability, the way we change over time. Sexual plasticity is why we can find our partner deeply attractive at 20, and still deeply attractive at 50 even though they look rather different. We are to some extent, wired to change. Sometimes this works for us, sometimes we find it frightening or stressful.

Freedom from limiting cultural myths around beauty, about the superiority of youth, the way we de-sexualise people with disabilities or illness. Many mature people love to have sex, and do not deserve to be seen as ‘creeps’ or weird. (See blog and book Better Than I Ever Expected) Emotionally safer sex doesn’t just happen between the individuals involved, it’s a cultural and community concern. How to create aged care resources that respect sexual and gender diversity, and support romantic and sexual relationships? How to support ethical sexual behaviour for people with intellectual disabilities, or at least foster the recognition that many of us, whatever our other challenges, are sexual beings. How to break out of limiting ideas that great sex only happens between the ‘beautiful people’ as if ripped abs means someone will be a generous and wonderful lover?

There are so many areas in which freedom can support us having emotionally safer, and better sex. Sexual morality is a tricky one, in that engaging sex (and life) ethically is a responsibility of all of us. Determining what ethical sex is can be challenging. Many of us draw from our faith communities to help us decide moral sexual behaviour, and this can be deeply rewarding. But for some of us, their moral frameworks around sex are a painfully poor fit, leaving us trapped in self rejection or hypocrisy. Some of us have no faith community and are relieved by the sexual freedoms of Western culture, but also wrestling with our sense that sex should be engaged ethically and trying to find non religious frameworks for that. There’s more than one way of looking at sex. You do not have to be trapped between moral frameworks that are hurting you, and immoral sexual choices that also hurt you (and other people). Go looking at the ways other people and other communities frame ethical sex. This isn’t an easy road, and people’s deeply held beliefs about morality are sometimes nowhere more intense than around sex. For some of us, rejection and revulsion would be the cost of living more authentically to our own beliefs.

There is no right way of dealing with this. Each of us has to decide for ourselves what prices we are willing to pay to be connected with our communities. For some of us the much lauded ‘coming out’ would cost us everything, and we would be at very high risks of suffering violence or suicide. For others, anything but coming out is a slow death. We do not have to walk each others roads. But freedom can mean at the very least, freedom inside ourselves from ideas that make us hate ourselves. Freedom from being trapped into choices between a morality we do not believe, and abusive sexual acting out. Freedom can mean simply the freedom to know who we are and make our choices willingly, bear our burdens with love and not hypocrisy, and seek to help our communities grow into safer and more accepting spaces.

Perhaps one of the greatest freedoms we need to make sex emotionally safer, is freedom from shame. Brene Brown is a brilliant resource in this area, she writes about shame, courage, and imperfection. Here’s a link to a couple of her great TED talks about connection and shame, or watch it below:

Freedom is a key human need, and it’s not as easy as it sounds. It can come at great costs, and expose us to awful risks. It can be painfully vulnerable. It can ask us to deeply wrestle with our beliefs about love, morality, and relationships. It can also be healing, liberating, and deeply peaceful. I hope you are able to find freedom from ideas that are hurting you, to make peace with yourself as a sexual (or asexual) person, and to engage in sex and support others to engage in sex in ways that are ethical, loving, and emotionally safer.

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

5 hours after an assault

Rose and I were unfortunate enough to recently have to exercise all our ‘how to support someone after trauma‘ skills. We’ve talked about it and decided that it may be a useful story to share, in the hopes of helping other people better support their friends and family.

My lovely girlfriend Rose accompanied me to Melbourne recently for the International Hearing Voices Congress. I was given a full three day subsidized access to the congress, but we could only afford to pay for one day for Rose. So, on the Wednesday while I was having my mind blown in amazing talks, Rose was off roaming the city and seeing the attractions.

Rose and I are both passionate about social justice. Neither of us have had easy lives, we’ve both experienced abuse, homelessness, and poverty. We’ve both had PTSD. Rose was first homeless as a 13 year kid, and we both have a particular place in our hearts for other people who find themselves in that place. So, when she came across a guy who was living rough, she bought him a cup of coffee. She sat nearby to share a drink and a chat. And then things went bad. He grabbed her, manhandled her, and tried to kiss her as she struggled and then froze. It seemed like a long time before she was able to break out of being frozen and run away. She was alone in a city she doesn’t know very well, with almost no phone battery left, having a major trauma reaction as many other far more horrific memories and experiences suddenly flooded her.

This is not a nice story to tell, because it touches on prejudices and misconceptions. I want to name some of them. Firstly, the idea that homeless people are dangerous. Like people with mental illnesses (and the two populations have a massive overlap), people who are homeless, and especially those who are roofless are often treated with fear and revulsion. They become invisible, and can go days or weeks without another human being making eye contact, smiling at them, or touching them kindly, even when they live in crowded cities. This fear reaction can trigger exactly what people want to avoid – because being dehumanised alienates people. And alienated people often feel little empathy and a great deal of anger at communities that have rejected them. Homeless people are not more likely to be violent. It could have been the well dressed guy waiting at a bus stop, it could have been someone Rose thought of as friend. The latter is harder to imagine but statistically far more likely. Rose was doing exactly the right thing – treating a guy who was down on his luck like a person, and sharing a little of her good fortune with him. Things going wrong does not always mean you have done something wrong. And sadly, doing the right thing does not shield you from things going bad at times.

The other misconception people often have about an incident like this is around the freeze response. There’s a lot of complex science, neurology, psychology, and outright conjecture about the freeze response that I won’t go into here. Suffice to say, it’s pretty common in both animals and people. If you want to read some more about it, try the blog Understanding Dissociation by Paul F. Dell and look for the term ‘tonic immobility’. I’d also suggest the works of Peter A. Levine. Here’s a quick overview of what I’ve found useful – there are (at least) five basic responses people have to a major life threatening event – Fight or Flight, Freeze, Fold, and the Tend-and-Befriend. Fight we all understand and usually people who fight in the face of something like an assault are applauded and appreciated. Sometimes if their fight response is intense or seen as disproportionate, they are instead lynched. The flight response is also pretty self explanatory and again, there’s usually a pretty warm reception to people who have been able to escape something awful by running – and even those who tried but didn’t make it. After that, things get less clear. Tend and Befriend is about the intense bonding and banding together for survival that people can do when faced with severe threat. It’s often an overlooked response to threat, and not often framed in the more ‘heroic’ light of the fight or flight.

Lastly, we come to freeze and fold. These are the two responses that culturally carry the most baggage. People are rarely applauded for having these reactions, and sometimes the reaction itself is viewed as evidence the trauma was not particularly bad, or even the fault of the victim. Freeze is an extremely common response to threat. It’s difficult to predict, and even people who have previously never frozen in response to a threat can be surprised to find themselves doing so. Freezing often predicts a much rougher time after a trauma (by which I mean a higher incidence of PTSD), which personally I suspect is at least partly the result of the cultural shaming around the freeze response. Freezing can be life saving in some situations. Some animals escape predators that leave them unattended, thinking they are dead. Animals who have frozen are often numb; unafraid and unresponsive to pain. If an animal cannot escape, this is a merciful state. For some people in some terrible situations, the same dynamics apply. Freezing is a powerful, involuntary response of intense immobility. For some people it may be triggered when no other threat response seems like it will work. For others, freezing may be the result of both the fight and flight responses being triggered at the same time.

Where the freeze response immobilises, the fold response is a complete collapse of independent will. This threat response is about extreme submission and compliance. In the short term it can be life saving. It can also (like all of these threat responses) be catastrophic if used in the wrong situation. In the long term it may unfold as stockholm syndrome.

So, in response to a threat, Rose froze. At some point, she then ran. Fortunately, she was able to then stop and think about where would be safest to go. She decided to find the conference. When I found her in a quiet room at the conference, she told me what had happened. She was reluctant to tell me and already feeling a deep sense of shame about the assault. She was also highly stressed and dissociative and in a very traumatised state.

The conference was about an hour by public transport away from where we were staying in Melbourne. We also had bought tickets that night for a ‘Mad Hatter’s Party’ which was being held at a hotel across the city. My first impulse was to cancel the party and get us both home. When I suggested this, Rose was extremely distressed. To buy ourselves time to settle and talk about the evening’s plans, we instead walked to a nearby restaurant. This was a plan she liked. I knew that if I could help Rose to eat and drink, this would reduce her dissociation and help her to communicate what she needed.

We were fortunate in that a nearby restaurant had a fire lit. Rose was extremely cold, which is a common trauma reaction – basically she was in shock. The nearest table to the fire already had people sitting at it, the lovely Lewis Mehl-Madrona and his gracious wife, resting after a big day at the conference. In an unusual step for me, I asked if we could join them so I could sit Rose as close as possible to the fire. We found a risotto on the menu she felt she could stomach in her upset state (digestion shuts down when you are very anxious), and ordered drinks with bitters in them so the strong flavour would help to ground us. I sat next to Rose and kept an eye behind her to make sure that no one came up to her without her seeing them approach. Literally having someone’s back like this is very important at this point. New tiny shocks after a big trauma can embed the sense of terror more deeply, because the reaction to the little shocks is overblown and involuntary. Where people start off distressed and feeling helpless due to the trauma, they move on to feeling distressed and helpless to prevent the ongoing trauma reaction they are having. We both knew this, and as much as possible made it normal that Rose was agitated and hypervigilent. Rose did not wish for the others sharing the table to know what was going on so we did not disclose it.

Food, warmth, company, and drink all helped to ease some of Rose’s dissociation and distress. We started to talk about our plans for that evening. Rose was adamant about not missing the Mad Hatter’s Party, and also very concerned about not being able to cope with it. It was tempting for me to overrule her and refuse to attend. I was very mindful of her need to be heard and to restore some control over events so I tried to work with her instead. She was anxious about the assault making me miss out on something important I had been looking forward to. The thought of this was increasing her shame, guilt, and self loathing where she was blaming herself for the assault, blaming herself for freezing, blaming herself for telling me about it (and ‘ruining my time at the conference’) and blaming herself for having a trauma reaction to it afterwards. I could see that doing the ‘right’ thing and cancelling was actually going to make her distress much worse. So instead I attempted to reduce the intensity of the dilemma. I agreed to go to the party, on a relaxed, let’s-see-how-it-goes approach, with no shame or blame if either of us decided it was a stressful kind of event and wanted to go home early. I made the call that we would catch a private taxi instead of public transport to get home. Rose agreed to leave the party if it was intolerably stressful, and accepted the offer of a taxi with only a token protest about expense. I had no desire to deal with buses myself at that point either.

So, we trekked across Melbourne and found our way to the party. It was loud, cramped, and possibly the least trauma-friendly environment we could have gone to! But Rose was determined, so we found a good seat – from the point of view of not too far from the exit, back to the wall, able to see everyone. Rose ate nibbles as they came around. I bought a jug of lemonade. We shared half an alcoholic drink to take the edge off. (one drink can help, more is generally not a good idea) I couldn’t eat much as my adrenaline was too high.

I put all my own feelings about the assault in a mental box and ignored them. This is a pretty important skill when you’re trying to support someone else. I had a genuinely good time, made some friends, gave out some business cards, danced, had a laugh. I checked back in with Rose frequently. She was happy we had made it but stressed about the crowding and the really loud music. Eventually we decided to call it a night. We held hands tightly as we walked into the night and found a taxi. I didn’t let her hand go until we were both in the car, and then I held it all through the drive ‘home’.

Home that night we gently piled into bed and unpacked our feelings a bit more. I held her hand as Rose bravely opened up about a number of fears and areas of shame that were turning up for her about the assault. We discussed and countered them together. Was it her fault? No. Had she asked for it? No. Could she have seen it coming? Well – maybe, that’s a hard call. If on reflection she thinks she could have been more alert, that’s okay. It still doesn’t mean she didn’t anything wrong and certainly doesn’t make it her fault. Do I still find her attractive? Hell yes! Will I be upset or angry if she doesn’t want to be touched? Not at all. What about if she doesn’t want to be touched again ever? It will be okay. We’ll still be friends, even if we are never romantic partners again. Touch will only happen if and when and how she wants it.

We keep talking and crying. I share how sad I am for her, how angry I feel about it – but not with a lot of emotional intensity. The crucial thing is to be present but allow how Rose is feeling to be paramount. She should know I feel things too, but not be comforting me. My voice and words are sad and gentle but also express quiet confidence that she knows she needs to manage this and will get through it okay. She shares a little about some of the other memories that have been stirred up for her. I listen. She talks about the freeze response, and talks about other responses she’s had to threat. I emphasize that a freeze reaction is involuntary and does not mean she ‘asked for it’ or ‘wanted it’. She finds this helpful and the sense of shame diminishes. We turn the memories over together, the upsides and downsides of different reactions in different situations. It’s always tempting to bury everything in platitudes and reassurance, but this questioning is necessary. Rose, like most of us, needs someone to gently engage with her about the complex moral questions these kind of situations raise.

After a while she asks me to touch her back. I run my hands over her t-shirt. She asks me to go under her shirt and touch her skin. I stroke her back gently, checking that the pressure, pace, and type of touch are what she wants. She shakes and cries a little. I want to hold her tightly but restrain myself. I cry a little too. We lay close and hold hands. After a while she cuddles up under my arm and lays her head on my chest. I can feel my heart beating, like a big sad drum. I hold her close, we tell each other how much we love each other. We go to sleep.

If you’re reading this hoping for suggestions on how to manage with your own partner, I’d suggest reading Intimacy After Abuse, and my series about emotionally safer sex which starts with Safe Sex 1: Checking in.

Fear of the dark

So another sinus infection stakes it’s claim on my face. The locum reckons it’s going bacterial but my enthusiasm to take antibiotics again is negligible. I’m run down and tired and already have thrush so thanks but no thanks! I’ve cancelled work for the next few days as I’m developing signs of a chest infection too. Have to be well enough to drive to Melbourne for the hearing voices congress next week!

Rose has also been sick with gastro, mercifully brief but horribly unpleasant, so we’ve been unhappy comrades in arms for a few days. She’s also been under a lot of badly timed job stress. Yesterday I spent half of it winning medals for being the most useful and supportive girlfriend, and the second half winning medals for being the most overwrought and unhelpful girlfriend. Dammit. Oddly enough when I crashed she rallied in that funky little see-saw turn taking thing couples can do. Thankfully!

My life only tends to work out in small windows before the next really bad thing happens. This makes me pretty anxious and reactive to a whole bunch of triggers suggesting a new crash is about to happen. I once went to see a shrink for help to make new friends. I knew I had DID but wasn’t out about it to anyone, rather was deeply deeply afraid of anyone finding out. I talked with this shrink about how lonely and emotionally unstable I was. We talked about a common painful dynamic for me at the time – having a moment of really good connection with someone, perhaps a new acquaintance, and going home feeling like things are looking up! Excited about my future, really happy with how the conversation went, reassured that I would make new friends. And then the dawning realisation over the next days of weeks that this wasn’t the case. The wonderful day was not the start of a new life, not a sign of good things to come. It was an exception. That friend would be busy for the rest of the year. The acquaintance wouldn’t come back to uni. The compliment from the boss didn’t mean I was going to be rostered on for more shifts.

The shrink advised me to live entirely in the moment. To take everything at face value only and stop hoping that life would get better. It’s the hope that makes you unstable she advised me. Stop thinking about the future. She was right, of course. Her solution was a bit drastic. At the time, without hope that life would get better, I would have killed myself. The instability was painful but worth it for me.

Narrative therapy is a fascinating field I’d love to know more about. A kernel of an idea about it is this : the stories we tell about our lives and who we are are profoundly powerful. In my life two stores compete for my attention. One is a story of hope and acceptance. That how others have hurt me is not my fault. That it is not a failure to be poor, or sick, or hurting. That life can and does get better after awful things have happened, that scars and hearts heal and love and joy live alongside anguish.

The other sorry is darker. That I am broken. Fatally flawed. Doomed. That nothing I can do, not my best efforts, all my strength, all my love, can stop the dark. That nothing works out for me. Life requires risks and my risks send me tumbling into ravines.

This story has weight for me, a lot of evidence behind it. It becomes something I watch for, signs my world is ending again. A dark foreboding. A quiet despair in my heart. So I make plans, wonderful plans for my life. And I have nightmares, where Rose dies, where our child is terminally ill, or abused, where we both end up homeless with little kids in the back seat of the car. The dark eats my dreams. A little voice inside says if you’re thinking of having kids soon, you’ve got a shrinking window in which to kill yourself before you leave them with the burden of a dead mother.

This is horrible and people are often horrified when I talk about it. They try and reassure me that life is better now. But once bad things have happened to you, you know in your bones, they can again. It haunts me. In a weird way it’s a relief when they do happen and I can stop waiting for them, stop being encouraged to believe in an ideology about good things happening to deserving people that I know is mostly an illusion.

That relief reminds of the cycle of domestic violence. You get the slow building tension, then the rage/abuse/violence, then the honeymoon period where everything is wonderful. Then the tension builds again. People get so stressed and exhausted by the tension building stage, the paranoia it inspires, the knowledge that violence is inevitable, that they sometimes deliberately act to trigger it.

So, I’m in a DV cycle with the universe? (Is that what the crisis driven aspect of Borderline Personality Disorder is about?)

Last night, sobbing hysterically as Rose sang to me and rubbed my back, I understood how hard I work to keep believing in hope. Not a pollyana hope, a darker kind of hope. That my life, even with pain, will have meaning. That choices I make count. That I have some power to bring light into my life. That I can build a philosophy that understands loss, death, and failure, so that they wound but do not destroy me. That I can live in today, and dream, and if the sky falls tomorrow I can howl then. Keep building the ideas of failure and tragedy into my world, into my hope, into my love. Keep chasing freedom when the trap closes about me. Get help to hold back the dark. Someone to hold me when the nightmares come.

Tonks has also had a rough day. We took him to the vet this morning to be desexed only to discover that he is a she. She’s now sleeping on a shelf in my studio with her fancy new cone. Poor love.
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First abusive, anonymous email

Well, it had to happen sometime. I’ve been writing this blog for over two years, and out about having DID and being bisexual, both of which potentially expose me to abuse, violence, or ridicule in various circles. I received this email recently, from someone calling themselves, of all things, Pig Wheeky:

“I know u. I know your secret. Fat stupid ugly girl-no friends-no one loves u-u cling to your fictitious difference-to prove u r not insignificant-dissociative, gay- what next-how can u look in the mirror-how can u pretend in the face of those who have suffered real trauma-kill yourself-your deceit-your lies r unforgivable -u ir sickening-always know that we see through u. U r harming people that have genuinely survived horror-u r unbelievable-i know u dont care-u r borderline and psychopathic-u cant even look after an animal without rspca on your back-i know u -loser-yes i know-and u know what u r-u would b surprised how many of us c through u-u r your own hell-and u will reap. :)”

What fun. There’s nothing quite like linking borderline personality disorder and psychopathy to really give yourself credibility, and the movement between the personal “I” and attempt to sound like an important majority by using “we”. It’s all a bit pathetic.

I’ve received hate mail before, although admittedly from people I’ve known. The internet opens up so many opportunities for people to behave appallingly and hide behind anonymity. This kind of bullying is the crap that people like me face. Being open about these kinds of things leave you vulnerable to people who fear and hate and who give themselves permission to be abusive to those they deem deserving and still feel like ‘good people’ themselves. Bullying in the form of instructions or requests that someone hurt or kill themselves is common and disgusting. It’s taken awhile for policies in schools and the like to catch up with how vulnerable people can be coerced into harming themselves, to the sadistic delight of abusers who don’t even have to get their hands dirty to inflict harm.

Anyone who uses tactics like this has no claim on the moral high ground, and certainly none whatsoever about how to best care for and support people who have experienced trauma. I don’t believe anyone is insignificant. All of us are unique, have our own stories and paths to walk, our own souls to care for. All of us have to wrestle with the task of how to navigate a complex, at times very painful life, and be as human as we can, to grow into the best we can be in values and character. Some of us grow kinder and gentler through the awful things we experience. Some of us grow colder and vicious. Those who become vile are to be treated with great caution, and regarded with deep sadness. Once they too were innocent. Corruption is always a terrible loss of who they could have and should have been, what they could have brought to the world. We who are abused by them are still, oddly, the lucky ones.

Having said that, we need love and care to survive and endure the cruelty and brutality of these kinds of assaults on ourselves. Every day people suffer due to bullying like this. People are made to feel alone, ugly, less then everyone else. The wounds can be deep, can even be fatal. Love heals. Anger cleanses. Hope brings life. In community and with connection we are restored.

Thankyou to all of the people who love and support me, to the community I’ve been so blessed to find. Remember all the people like me who don’t have this. Look for them, shield them from this kind of destructive hatred. Shelter each other. Help each other to be the best we can be.

Good food and discussions about the future

Today I slept, panicked, worked on finishing all the preparation I need to have done to offer henna art at a gig for the first time on Friday, panicked some more, and had Rose and my sister over for dinner. I’m now back to panicking and henna prep again. It’s been a long day. Dinner was lovely. We made prawn rolls.

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Yum! Rose and I are still eating lots of salads and I’m loving that. Some days lately when my anxiety is so high it’s the only meal I have. It was so nice to sit at the table and share and talk about the future. The three of us are making exciting plans for next year together with housing and plans for babies. I’m so thrilled and so anxious too, there’s a raw feeling when I talk about dreams and ideas about family and community and the future. I dropped my sister home and on the drive back, alone in the night, found myself shaking and weeping. I don’t want to be homeless again. I don’t ever want to be on the run from a violent relationship again. I don’t want to feel trapped again, to be sharing a bed with someone who frightens me or makes me feel deeply alone. I’m pro equal marriage rights but terrified of the prospect of being a wife again. Reading Centrelink documents that explained that if Rose and I share a place – even as flatmates with separate bedrooms, we will be considered by the government to be in a ‘marriage like relationship’ made me break down in uncontrollable sobbing.

I’m also in love, with a beautiful, devoted, loving woman who I hate being apart from so often, hate having to drive back to my own unit at the end of the night, want to be able to support when she’s ill, help cook for, share what I have with. I hate that the government will not allow us to live together but maintain separate finances. It feels deeply creepy to me, state-sponsored prostitution, that I can live with anyone as long as I don’t sleep with them, and sleep with anyone as long I don’t live with them. Weirdly the financial penalties are reversed when children are in the picture, as single parents are penalised where partnered parents are not. I don’t like the enforced dependence, the forcing of what we have into something it is not, into ‘marriage like’ when what we have is built on friendship, is platonic and romantic, is built on freedom and a deep care for our mutual vulnerability and limits.

Hope and fear, dreams, desires, longing and loss. Good food with people I love. Another shoe eaten by the dog, another day at work that leaves me frozen with anxiety. Life is challenging.

Where does my psychosis come from?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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