Endo & adeno 2: a hidden cost

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

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

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

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

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

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

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

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

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

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

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

Tribe Night

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

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

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

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

Inner children – shame and threat

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

One of the weird days

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

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

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

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

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

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

Awesome quote: mental health and dungeons

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

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

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

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

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

Buck Angel – trans and diversity

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

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

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

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

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

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

Gifts

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

Cheers to hope and the spirit of multiplicity

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

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

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

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

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

Book is happening

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

 

 

Art with friends

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

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

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

Systems & pathology, & mental health

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

  • Transparency
  • Freedom
  • Mutual Relationships

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

Hypnotherapy and Dissociation

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

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

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

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

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

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

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

Trans Day of Remembrance

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

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

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

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

Preparing for the death of a child

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

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

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

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

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

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

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

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

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Kiki’s grave before burial

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

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

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

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

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

The Void: dissociation, amnesia, and identity

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Multiplicity and Love

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

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

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

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

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

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

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

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

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

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

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

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

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

Endometriosis & adenomyosis 1

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

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

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

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

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

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

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

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

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

Drawing class – maize

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

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

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

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

New resources

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

Today I have

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

My new brochure!

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

Humming

Humming with happiness. Starting to get better! Reducing pain killers finally. Had a wonderful face painting gig in Stirling today, dappled light through trees, so peaceful. Well enough this evening to update the DI website a little, yay! I’ve added some new pages and I’m working on fixing up all the language to be consistent across all the pages. I’ve settled on using the term ‘people with multiplicity’ as the best inclusive, non clinical description I can think of for now. I’m still using parts for alters which I know some people hate but I can’t think of anything better. ‘People’ just gets seriously confusing because it’s so hard to work out whether we’re taking about alters or other people in different bodies! Work in progress!

So I have a few new pages up:
A note about language
Transgender & Multiplicity
Memory & Amnesia

Feedback would be most welcome. I’ve also finally decided my flyers for talks are ready, and two are now uploaded to my business site! There so much still to do, but it’s so very exciting to be well enough to make a start. 🙂 You can check them out here:

Talks and Workshops

Tomorrow I’ll be resting and working on some housework. I get to snuggle and hang out with Rose all weekend. 🙂 Things are looking up!

Homeless and happy

Zeusy's new friend Zoe & her human Sarah, outside the Hindmarsh Library.              It was nice to meet Yew both !!!

The other day I ran into a travelling artist Novak Tonkin and pooch Zeus. He asked to take a photo of Zoe and I for his flickr page which is here. He photographs his travels and people he chats with as he bikes around Australia. Great chap to have a chat with.

Once again. I’m struck by the difference between different experiences of homelessness. Some of it is about choice, some of it is about community, and a lot of it seems to be about skills and resources. I wish I’d known half the things this guy knows when I was homeless. How can we change experiences for people who are struggling? Surely part of it is linking people to peers who are coping, and sharing those skills.