Blogging is strange

I’ve been writing this blog, updating daily for more than 10 months now. During that time I have gradually revealed more information about myself, and wrestled with different inclinations about things like being honest vs exposure stress. As I work independently, I’m free to work according to my personal values and beliefs – this means things like I choose to create opportunities for mutual relationships and friendships with ‘consumers’, people the rest of the mental health sector tend to treat as the untouchable ‘them’, against whom inflexible impersonal boundaries must be maintained. This is so important to me. I can’t function within systems that don’t match my values, I crash so fast when I feel I am being forced to be part of processes that are dehumanising. I understand that good people take the harsh edges off bad systems and I am so grateful to those who have done this for me, but I just can’t be one of them. I function in this ‘zone’, this strange tightrope walk where I can do things other people find hard, and can’t do things other people find easy. The downside of this independence, is that every day I make major choices and decisions about who I am and how I will operate. I was at a face painting party recently and someone asked for my card. My business card has this blog address on it. How many Mums looking for someone to face paint their kids are going to choose the artist who talks about hallucinating on her blog? Sometimes I think I’m totally crazy revealing what I have, and sabotaging every career possibility that is open to me. Weeks like this when I’m facing expensive dental work and don’t have enough money for groceries again, the cost of my limitations and my choices really hurts and I doubt everything.

Then there’s the groups – I am so passionate about my groups, and I say ‘my groups’ not in a proprietorial way, they also belong to every single member of them, they are our groups, but they are also ‘my groups’ in that I am also a member, deeply invested and excited and proud and at times exhausted and full of doubt and uncertainty. The government doesn’t fund groups at the moment. They are out of fashion in the mental health world, apparently the concept of groups brings to mind a bunch of confused people whining about their circumstances in a pointless repetitive self-re-enforcing cycle that supports no one. So they are a labour of love, no payment is coming there. The feedback from the people who attend is divided between those who didn’t find it helpful and look elsewhere, those who find it helpful but overwhelming, and those who would lynch me if I tried to shut one down as they love them that much. 🙂

Talks and workshops on the other hand, are taking off. The recent abstract accepted in Wales is a huge boost, really positive feedback that what I’m doing is good quality, professional, useful work. I’m also giving talks locally and being approached by other organisations interstate. This is simply thrilling!

I feel this sense that what I’m supposed to do now, the road in front of me is to work on creating a professional image. It’s critically important to maintain a good reputation for reliability before an organisation is going to front out money to bring over for a talk. They don’t risk this if there’s an even chance you’ll have a psychotic break or drug binge or get appallingly ill out of the blue the night before the big event. I’ve been working on getting myself more set up to make travelling and giving talks easier. I bought an external DVD drive for my netbook (mini laptop) recently so that I can install Microsoft Office 2010 which will allow me to last minute modify a powerpoint presentation or even hook the netbook directly to a projector on the occasion that there are hardware or software incompatibilities. My phone upgrade allows me to access the net, my email, and skype much more easily which helps me stay in touch with those who support me in the stress before or the depression following exposing talks. I have an app that allows me to update in blogger on the go without a computer. You get the picture.

In the meantime, when I’m sick like I have been recently, I write about it on my blog. Instead of creating a slick, professional image I write miserably about how stressed and scared being sick makes me feel. In those days I can feel the whole tone of this blog change, suddenly become more intimate the way personal blogs of people sharing about illness or tragedy are. This scares me. I feel like I’m building a career with one hand and tearing it down with the other. I feel like everytime there’s a clear path in front of my feet I resolutely head off into the jungle instead. I feel like I keep dragging everyone over to the corner and pointing at the terrified little man behind the curtain.

Creating a ‘public profile’ is extremely weird. Going to a conference to give a talk, it is the strangest experience to me when I sit down at a stranger’s table afterwards to be friendly and have them thrilled I did so. I bounce between being a nobody whose opinions don’t count and feelings don’t matter in the worst of the health system, to being a somebody people are excited and grateful to talk to, or hurt and disappointed if I don’t make time for them. It really spins me out and does my head in. It’s scary as hell! And yet I’m doing it. And I doubt that call every week, doubt my motivations, doubt the results, wonder why the hell I’m doing something I find so frightening and challenging, answer that question for myself, and then ask it all over again.

I’ve recently come to the conclusion that I can’t do this process with any kind of dignity. I was hoping the talks would get easier, that I would develop the thicker skin or professional exterior that would allow me to cope with stresses without howling my eyes out on the floor of my supervisors office. I find my vulnerability and sensitivity on the one hand make me good at what I do, and on the other hand are so painfully out of place in a corporate culture, painfully embarrassing. I’ve been waiting for it to improve, but it doesn’t seem to be happening. I just keep pushing myself out of my comfort zone, setting my sights higher. The minute I can cope with what I am doing I add in something else. It feels like training for the olympics, as soon as I can jump that high I set the bar higher. My supportive network appear to be resigning themselves without chargrin to the idea that I quite regularly wipe out into neurotic self doubt and terror, and given some TLC I pick myself back up and get on with it. It’s not a perfect system but it seems to be working.

The process of presenting my ‘best side’ to the world, creating an image of myself that I ‘market’ and ‘manage’ bothers me almost as much as the weird over-exposure and faux intimacy of revealing deeply personal information about myself does. Other people have smuggled personal experience into their professional lives secretly, like Marsha Lineham, who struggled herself with borderline personality disorder as a young person, found some answers, and kept it all quiet as she then worked her way to a PhD in Psychology and developed Dialectical Behavioural Therapy. It has been incredibly difficult to build credibility within the mental health system if you are known to have a mental illness yourself. Lineham is an amazing person who recently ‘outed’ herself at 68. I could have gone down this road. It’s a viable option and one many other amazing people have done. However I’ve rather shot myself in the foot if that was the plan. I have in fact done the opposite and been building my credibility on my lived experience, and not ‘long in the past’ experience but ‘oh last night there were some interesting black creatures scuttling about on my ceiling that only I could see, and how are you?’ kind of experience. I rather resent this; on the other hand people often tell me that it’s a relief to see someone like me being open about my struggles. People feel less alone – which is always what I’ve been trying to do.

Which brings me back to my original point. I guess I keep revealing my vulnerabilities and struggles, even those I feel like I’m not supposed to talk about – like how hard the talks can be, because the alternative, the creation of a public persona that is dazzling and free from all of my limitations, that also feels de-humanising. A different kind of trap to the misery of the ‘consumer’ label I have finally had enough of and turned my back upon, but a trap nonetheless, a place I can’t be who I really am, where secrets lie under all my words and pain is hidden beneath silence and smiles. So I guess I’ll keep muddling along, whether I’m building credibility or shooting myself in the foot. Weeks like this one I remind myself that my backup plan is Frida, who when bedridden with pain, painted onto a modified easel by her bed. I’ve heard of worse plan B’s.

I am on the improve at last. Facial pain is reduced although the skin infections are troubling. I had a rough night full of nightmares and limped out to see my counsellor today. She let me just fall in a heap about everything I’m scared about, overwhelmed by, confused over, and not have to present my ‘functioning side’. It’s a rare gift those people who let you fall apart and still treat you with respect and dignity. I must have drained half my sinus infections, I covered half her coffee table with nasty tissues. (which I threw out afterwards, I don’t hold with the idea that the counsellor has to clean up used tissues!) I came home feeling a 100lbs lighter. It’s so nice to have spaces where I don’t have to know what I’m doing or be competent or calm. I felt like I was drowning without a raft, and no one can take that away really, but it does help to be able to cry about it. Tonight I celebrated feeling a bit better by having a meal that wasn’t blended! Hurrah! A bit of soft fish, mashed spud with garlic, mint peas, and slightly soggy (so I could eat them) sweet potato chips. It was very, very exciting. 🙂

Sick and unhappy

I’m off the stronger painkillers now and kidney/liver function is bouncing back which is great. I’m having trouble coping with the antibiotics though, and I’m only a quarter through the course. I’ve got a full compliment of quite severe side effects, some of which trigger other allergies I have. The upshot is that my tooth hurts a lot less, my sinuses still hurt a lot, I have new ulcerating skin infections that hurt and itch. So I am feeling in less pain but very miserable, uncomfortable, and depressed. At least off the opiates the hallucinations have settled down. It was a busy couple of nights lying in bed listening to nonexistent people trekking through my unit, using the appliances. (Get your hands off that, that’s MY microwave!) Man it’s a good thing I’m an old hand at this. I’m irritable and stressed and fed up and desperately want to get back to feeling useful and happy and productive and not wanting to crawl out of my skin. Sigh.

Pictures to warm you up

Still sick and miserable. Not taking any more painkillers now because I’ve hit all the warning signs of liver and kidney stress. The levels have reduced enough to make this manageable. My world is currently my bed, my armchair, the tv, and my very nice new phone which I’m terrified of dropping. I’ve signed onto a contract and hopefully will manage not to lose, drop, soak, or otherwise destroy my very fancy new phone before the two years are up! Today I had enough energy to shower and put some pears and cardamom on to stew in my rice cooker. As long as I keep heat and gentle pressure on my face, things are okay. Sarsaparilla is being smoochy and adorable – today I discovered that he loves to have his chest and tummy scratched. He’s never rolled over for a rub before, he really seems to be blossoming. I need to buy a cat tree for him however, as he’s taken to amusing himself by clawing up my nice rug and chewing all the plastic ends on my shoelaces. I have watched a lot of people running around on tv (still can’t focus well enough to read) and amused myself by taking photos with my phone. 

Not in hospital :)

I’m still here. 🙂 not the happiest of munchkins but hanging in there. Got the cat scan results back today and there is infection throughout my sinuses, in my cheeks and forehead, with the drainage on my left side completely blocked. That means double the time on antibiotics to clear it all. I’m coping okay with the stronger pain relief, being very sparing and cautious. I can’t see straight or walk in a straight line, but I didn’t have any marathons planned anyway. I’m not getting much sleep, I toss all night and trek back and forth to the microwave, reheating my wheat bag. Friends have been looking out for me, which is lovely, and my brain has settled down a bit. I don’t know how I’m going to manage anything in the longer term with the dental work etc yet, so I’m not thinking about it. Just riding it out.

Health update

Ran around the place having tests done yesterday, the results are in. It turns out I have an infection in the nerve of a back molar, which sits right next to the TMJ joint, hence the similar kind of pain. It has killed the tooth and spread into the surrounding tissue, infecting my sinuses on that side also. So that explains the severe pain. I’m now on antibiotics, which I don’t react very well to, but which should kill the infection and therefore the pain, hopefully starting to feel some relief in the next couple of days. The pain relief is inadequate so tonight a locum doctor came out and we’ve decided to risk the allergic reaction to a stronger opioid. I usually get 12 – 24 hrs before my liver starts shutting down, and at the moment I need that window desperately. If I start to react badly I’ll go into hospital. In the meantime I’ve taken one tonight and it has helped a little bit although I am disappointed at how much pain I’m still in. The antibiotic reactions may take a few weeks to clear up, not dangerous but painful as I tend to ulcerate. The tooth needs to be either extracted in a week, which is cheaper but will mean I cannot chew at all on my left side, or I need to go through root canal work and then a crown, which is expensive and I have no idea how I’m going to get through it without decent pain relief. I had five teeth extracted at the same time once, and a salivary biopsy, and the experience was horrific. After 24 hours on an opiate that barely worked I was psychotic and my liver was crashing so I had to go cold turkey from then on, then reacted to the stitches which had to be cut out and replaced, I was ill for months.

So I’m kinda shattered. There’s no way I’ll be in next Wednesday to do my final art project, if I’m lucky I’ll be able to keep the impact down but my savings will be demolished and this could be a rough time. Having said all of that, I’m not in danger, just very miserable. I will go to hospital the minute I feel unsafe. Please don’t worry, it all really sucks but I will get over it. I’ve come through worse. x

Remembering sickness and loss

I’ve been getting a painful up close reminder of how much being sick takes away from you. I still haven’t got through this pain flair up, I went off to the doctor yesterday who increased various meds, all of which have terrible side effects. I can’t get any decent sleep because the pain wakes me up all through the night and nothing much reduces it. It’s all a bit of a mystery, there’s nothing I’ve done to set it off, it’s not lack of self care or anything like that. There’s no reason I should be having regular flair ups. The usual story.

I find I can be pretty philosophical through a few bad days or weeks, but once it runs on too long or the pain level gets too high I start to run out. I’m spending half my time crying at the moment I’m so depressed and frustrated. Wednesday night was my sculpture class which I had to miss again. I have to cancel the rest of this week to keep medical appointments and have tests done. I remember this world, and even a small brush with it like this is terrifying. There’s so much grief in being ill, such a profound sense of loss.

Watching my peers go off to university while I was too sick to cook my own meals or bath unaided was an excruciating time in my life. Fear, misery, humiliation, and painful empty hope tortured me. Chronic pain is an evil thing that warps you, you notice yourself changing, becoming irritable, angry, losing your joy, and you watch it all happening and fight it with everything you have but you don’t always win. Then comes the shame, the fury with yourself for how weak you are, that if you only tried harder, you would be better.

You watch the toll it takes on relationships. You want to know the divorce rates when one partner has a chronic illness? Want to know the suicide rates? For the first episodes friends don’t take it personally when you cancel on them. After a while they decide it’s simply kinder to stop inviting you. It’s like watching your blood running down a drain from a wound you can’t staunch.

I remember this world. Going through a supermarket in a wheelchair and cringing under real and imagined glances of disbelief when you haul yourself upright to reach an item out of reach. Being taken aside to have whispered conversations “The rest of the students don’t understand why you’re using a scooter when you can walk”. Caught constantly between the pain of walking and the humiliation of assistance. Limping back to the car bent over the supermarket trolley handle to try and take the weight off the hip that is screaming. Biting holes in my lip to distract me. Staying home for so long the outside world became a memory, a dream. Tolerating whatever I had to do to be able to get back out there. But then, the feeling that my chair dominated me, that I didn’t have enough personality to fill it and radiate out beyond it, not enough confidence, that instead it defined me, caged me, engulfed me. I so badly needed another friend in a chair.

The assumption of personal failing, constantly having to deny that you have in some way done something wrong to bring this down on yourself, it’s type A personality, it’s about not enough sun, it’s because you don’t exercise enough, it’s because you exercise too much, it’s about blood sugar, about vitamins, about rare viruses, it’s all in your head.

“I hate myself” has been on loop for days now. I don’t hate myself. I just really, really, don’t want to be sick, I’m very tired and there’s a lot of bad memories in my head.

Charlie has a tree

I’m still very under the weather with my pain flair up. I have a physio appointment soon which usually helps so fingers crossed. I was able to get Charlie’s grave finished the other day when we had some lovely warm weather, so I’ve planted a small bay tree over the grave by my back fence, and put a big black candle out there. I plan to print out a couple of good photos of him and put them up somewhere in my unit too, that will be good. Miss him like crazy, the place is so quiet without him! 

 And here is my lovely new outdoor dining set which I’m very excited about and can’t wait to start using when the weather warms up. 🙂 Once this flair up settles down again I’ll be able to sit out there in the cool, drinking hot chocolate and admiring my trees. There’s often beautiful cloudscapes or a lovely moon over the back fence to contemplate, it’s such a beautiful spot.

I have been giving a lot of thought to getting another dog and it turns out a friend rather urgently needs a new home for hers, so the plan is to have a trial period and see how the dog adjusts. I’m very excited and very nervous about it too. I am doing more and more talks which means times away from home so I need a dog that doesn’t mind too much being dog-sat by friends here and there and doesn’t do anything silly like howl the neighbourhood awake. Hopefully this is a good match and I’ll have a little hairy critter thrilled to see me when I come again. 

Abstract accepted!

Well, as I sat about today feeling like I’d lost a round or two with a boxer, into my inbox came a delightful email informing me that my abstracts for a 20 minute talk was accepted for the 25th Annual World Hearing Voices Conference this September! Here’s my abstract:

I hear voices as part of a dissociative disorder, and have done so since I was a child. I was diagnosed with PTSD at 14 and DID at 23. I now co-facilitate groups for voice hearers and people who experience dissociation or multiplicity, and chair a small Australian community group The Dissociative Initiative. Dissociation is often misunderstood and multiplicity especially is seen as rare and bizarre. My experience has been that multiplicity is a spectrum, and some voice hearers are struggling with dissociative issues and experiencing their voices as parts. I will share some of my personal experiences of how dissociation affects me, what it is like to have voices that are parts, and strategies I have used in my own recovery. I will also share a framework for making sense of the array of dissociative experiences, and how to understand ‘multiple personalities’ as a dissociative entity. For people who hear voices that are parts, there can be additional challenges to recovery such as when parts are able to control the body. I will explain some basic principles of working successfully with parts. I hope to inspire people to feel more comfortable and confident in navigating dissociative issues, and encourage people that it is possible to live well with voices who are parts.

The slight hitch is that the conference is in Cardiff, Wales. Which is a bit of swim. I’ve already made a couple of enquiries on the off chance my talk was accepted, but nothing has worked out so far. Now I’ll have to go hunting grants and funds and see if I can find a way to get there. Very exciting!

As I’ve been busy writing biographies which is like pulling teeth, and talk outlines, which are frankly more difficult to write than the talks, I thought I’d also update my pages here on the blog. The articles page is gone, collapsed into the New Here sitemap. I’ve uploaded all the PDF’s of articles into google docs and now just have to update all the links so they go to the right place. My Resources has been spruced up, and About Sarah has been updated. I’ve made a bit of leap in clarifying some of my diagnoses on that page, previously you had to know me or dig into the blog to work things out. Exposure is difficult and I’ve been managing it in staggered doses. Here goes, hey. 🙂

Is DID Iatrogenic?

Working (hah, and living) in the field of dissociation, I often come across the popular idea that multiplicity is iatrogenic, that is, caused by well meaning therapists implanting the idea in the minds of vulnerable clients. It’s almost impossible in the clinical sector to have a conversation about DID without someone raising this concern.

What really interests me is the clinical sector only seem to worry about this possibility with DID. I’ve never heard of anyone worrying about iatrogenic Depression or Schizophrenia. Surely people vulnerable enough to be convinced through suggestion that they are multiples could also become convinced of other symptoms? Iatrogenic mental  illness should be a huge concern for the psychiatric profession if this is the case: the whole process of assessment and diagnosis should be done in a way that reduces the likelihood of iatrogenic effects, with deep sensitivity to power imbalances, vulnerability, adaptation, and living to labels. So, is this what we’re doing? No, we have collared the word ‘insight’ and changed its meaning to ‘agrees with the doctor’. People are put in situations where to prove sufficient ‘insight’ to be allowed out of hospital they must agree that they have – whatever,  lets say Schizophrenia. Two months later a new treating doctor does more tests and changes the diagnosis to PTSD. Where does that leave the ‘insight’? Where does that leave ‘vulnerable people’ and iatrogenesis?

Secondly, when the iatrogenic argument is used as an attempt to explain that DID or multiplicity do not exist, we find ourselves in an unusual situation where apparently a doctor has the power to create a powerful belief and accompanying symptoms in a patient, but it is impossible for highly traumatised people under stress to create this same set of circumstances in themselves. Is the doctor magic? If doctors can do it, why not the rest of us? Of course, this leaves us with old definitions of multiplicity – that the person doesn’t really have parts, merely the delusion of parts – an approach which categorised multiplicity as a form of schizophrenia and led to therapeutic approaches that centred on denying the existence of parts and was generally pretty ineffective. But that’s down to arguments of cause and cure – the iatrogenic argument is still assuming that a ‘multiple state’ can  be created in someone vulnerable, but gifting this act of creation as the exclusive domain of therapists and presuming that no one else in any other context might be able to create this state also. Bizarre.

Do I think that everybody diagnosed as multiple must really be a multiple? Of course not. Mis-diagnosis is so rampart within the mental health system that it is actually the norm. It’s laughable to listen to the spin of the mental health sector about science and support and watch someone be given a diagnosis within a 15 minute assessment during high distress on admission to a psych ward, medicated and treated as if that diagnosis has merit over the next few weeks, and then watch it change as the psych on duty changes, and then again when the roster changes in two months, and then again… I’m  not making that up, I’ve supported people through that process. The whole idea that someone can sit in a room with you for a few minutes when you’re at your most incoherent (or drugged) and know better than you do what is going on inside you is laughable to me. I have huge issues with the DSM, with our diagnostic entities such as schizophrenia, and with the power imbalance of our process of diagnosis, where an ‘expert’ tells a vulnerable person what is ‘wrong’ with them.

Does my stance on DID (that multiplicity is certainly real and possible) mean I don’t worry about iatrogenic effects? Not at all. I’m very concerned because research consistently shows that people live to their labels – children treated as smart do great in tests, those treated as truants act out, those treated as caring are kind. We know this and have demonstrated the powerful effects of labels, obedience, authority, and adaptation in research over and over again and yet we pay very little attention to the massive risks of diagnosis, particularly being diagnosed with syndromes.

Let’s compare for a minute the diagnostic entity of Dysthymia with that of Schizophrenia. Dysthymia is chronic, low grade depression. Schizophrenia is a syndrome, a cluster of symptoms such as hallucinations, delusions, lack of motivation, lack of emotional expressiveness, and so on.

What are the risks of living to these labels? With both, there is an assumption of duration, that you will be ‘sick’ for a very long time, with schizophrenia most people are told they will be sick for the duration of their lives. How concerned are we that people who might not have struggled with these experiences for their lives will now live to that prophecy and fulfil those expectations? We should be very concerned about this!

In the instance of schizophrenia however, the labelling risk goes further. You can be diagnosed on the basis of a single experience such as hearing voices. On the basis of that ONE experience, people are told they have a condition that includes many other debilitating symptoms. We have just increased the likelihood that the person will experience all the rest of the cluster, and that when they do they will attribute them to the illness. It’s no surprise to me that many people with schizophrenia lack motivation, between the stigma, disruption, loneliness, and low expectations isn’t it the slightest bit reasonable that lack of motivation might occur? Is that really an ‘illness symptom’ or a reaction to circumstances?

Diagnoses often cluster many different symptoms and also make predictions about duration of experiences. My experience has been that while certain clusters are more common than others, we each of us have our own personal unique cluster. We should never ever be set up to expect that we will develop a whole range of other crippling symptoms if we don’t already have them! And I believe it is appallingly irresponsible to make miserable predictions about duration or quality of life when we have such an excellent evidence base that tells us people are vulnerable to making prophecies come true, however ill-founded they are.

So yes, I consider that DID is both over and under diagnosed. That in no way means that I assess people to try and determine if they are a ‘real’ multiple – it means I take your word for what is going on with you. I believe you are the expert in your own experience. I don’t care what your diagnoses are,  if you tell me you’re not a multiple, that’s cool. Right up to the point where you switch and introduce yourself as George anyway. 🙂 I think it is unhelpful when people are not dealing with multiplicity to have therapists trying to frame everything in that way – but not more so than therapists framing experiences as psychotic when they’re not or borderline when they’re not. All frameworks have limitations and that of multiplicity is no exception. It’s only valid if it’s helpful! I find it useful, and I find the notion of ‘healthy multiplicity’ useful and the idea that all of us have ‘parts’, that multiplicity is normal and healthy, merely the dissociative barriers are unusual. I’ve known people who needed to be more multiple, who had lost so many of their parts that they had become less then who they really were, shut down and limited and struggling. I’ve talked with people like this about Jungian archetypes, about the tremendous wealth of information and resources within us, about the need to react to life with a full deck of cards to play, not the same two cards over and over. But part of what makes these frameworks useful is that I have explored and adapted them to myself, not had them imposed on me from outside. (That’s not to say I haven’t been diagnosed, I was, but for me I went through a lengthy diagnosis process for myself to be satisfied that the language was accurate, useful, and not iatrogenic – see How do I know I’m multiple?)

For myself, like many other people, the simplest rebuttal to the iatrogenic argument is that my life, experiences, and journals all evidence significant signs of major dissociation and multiplicity long before I ever sat in a therapists office or came across the concept of DID. Not every multiple has this – and lack of it is not proof of iatrogenesis! Many people do have this; journals with different handwriting, different names used in different social networks, chronic amnesia, voices, and internal wars that predate contact with the mental health system. In some cases, a person’s medical notes carry all the evidence of distinct multiplicity documented many years prior to anyone considering a dissociative diagnosis, even noting the different names, ages, and functioning of parts but failing to consider multiplicity and conceptualising the observed behaviour as psychotic, borderline, or bipolar instead. Iatrogenesis is not a reasonable alternative to the possibility that multiplicity really exists. It is often framed in different ways, outside the west cultures may talk about people being possessed by demons or in touch with spirit guides, or speaking to to their ancestors, but the basic underlying experience of separate parts are what we have termed multiplicity and they certainly exist all over the world.

Excerpts from some very early journals of mine, many years before shrinks and therapy:

Oh how I envy you, 
who have nothing to suppress
but who are whole;
in this world.




What is this, that cries so plaintively, arcing wings within me?
Whose voice do I hear when the darkness descends?
If you put your head beneath the water, you can hear the screaming.




In dark mirrors my reflection is a strangers face
I cannot remember the sky or the feel of the rain.


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

An unproductive Sunday

The weather is too cold, my home is too un-insulated, and my joint pain is flaring badly. I couldn’t get to sleep until about 7am, most of which was spent shivering in bed under all the blankets I own as my TMJ (pain in the joint of my jaw) reduced me to tears. I cannot tell you how much it sucks to have a chronic pain condition that also leaves you intolerant of most pain killers. The muscles spam in cycles, one moment I’m right as rain, the next I’m totally immobilised. I’m very depressed and feeling sorry for myself because I had much more exciting plans like making art and going to the beach. I am instead contemplating getting a new, faster phone with an inbuilt camera, which would make navigating a lot easier – google maps takes up to 10 minutes to load on my current phone, and allow me to easily post a picture and a short blurb on nights like this when I’m too trashed to post anything more coherent. I’m eyeing up a later model Samsung which should upgrade me about a decades worth of phone developments. 🙂 I’m looking at buying another electric blanket as mine is dying and on the setting 60C manages to get just past the sensation of ‘cold’ and almost into ‘tepid’ if you use your imagination. Considering that we’re only 10 days into winter technically, I don’t think I’m going to make it through to spring at this rate without some major improvements in my keeping warm approach. Curses!

On the plus side a friend dropped round today with a belated house warming gift of a little outdoor table and four folding chairs in a set with an umbrella, so that is set up in the backyard and I probably spent a little bit too long sitting outside in the cold just because I was so excited about it. It’s like having a little cafe setting in your own backyard. I hope to make a habit of eating breakfast out there when the weather warms up a bit. In the meantime, I’m back to bed.

Ray Bradbury died

On June 5th at the age of 91. He was one of my favourite authors and I deeply love his work. I first encountered him when I read Fahrenheit 451 for a school assignment and fell in love. He wrote about the world I saw and lived in and yet somehow lived in alone and could not share. He wrote about people like me, strange, and numb, and vulnerable to every breath of wind with hearts so painfully breakable. He gave me words to tell my own story, he made me feel less alone when I was so terribly alone, the only one of my kind with a heart like a net, catching all the flotsam of the world and a mind like a kaleidoscope full of lights forever falling. His characters were my friends, in the years where there were no friends. His books were hearths by which I warmed myself when all my world was cold. He spoke of life, and what it is to be human. He spoke in poems, my native language, spoke of sadness and the wind blowing through you, spoke of joy and the smell of cotton candy and the song of memory and nostalgia and nights that call you from bed. I loved him. When I’m lost in a world that isn’t mine, in a place of deadness, where all the adults are corpses of children and the day has sucked me dry and the night is without comfort and the rain does not come his books bring me home, his words sing me back into my soul, back into my body, sing my hands to life and make me weep. I loved him. Homeless, I took a book of Bradbury with me at all times, a tiny anchor, a paper bag to keep my heart safe, slept by it every night, where it went I was alive, where I lay it down at night I was home.

There will be no new books now, no more poems. I never told him how he saved me, how he wrote me into life, like a string through a maze when I had lost my way. Just a writer did this for me, broke the glass and whispered in my ear that I was not the only of my kind, not alone and not the only one. Gave me hope and set a candle in my heart that life is to be lived and not endured, that the moon sings us from the drudge of day and in the wind are wild longings that call us from sleep and float us through nights of endless stars. Sorrow, sweet sorrow and regret and love and blessings and books that grace my shelves. He who wrote with such compassion has died and I mourn him.

He wrote:

The good writers touch life often
The mediocre ones run a quick hand over her.
The bad ones rape her and leave her for the flies.

He heard voices and wrote them into his books.

He wrote:

To all your inner selves be true

He wrote:

Once the years were numerous and the funerals few,
Once the hours were years, now years are hours,
Suddenly the days fill up with flowers –
The garden ground is filled with freshdug slots
Where we put by our dearest special pets
And friends: wind-lost forget-me-nots.
At night a clump of wisteria falls to the lawn in a wreath
Our old cats underneath in the loam
Cry to come into our home. We wont let them.
We let the wind pet them and put them to sleep.
It’s a nightful of ghosts, but then all nights are now.
It’s a long way on until dawn.

Too many fresh dug graves in my life too. Rest in peace Mr Bradbury, you made a difference to my world.

DI Constitution draft

Constitutions are kind of tricky things to write when you haven’t done it before! I have been really, really pleased with how the Dissociative Initiative (DI) groups and resources have been going running them from values rather than rules or ‘norms’ and so I really wanted to make sure the DI constitution actually laid out the fundamental values and principles of the organisation. I’m a writer and words and language are my thing, but the language style of constitutions is highly formal and for a poet that is kind of a stretch. 🙂 It’s funny how hard it can be to try and pin down things that are as invisible as values, things I feel in my gut such as the instinct to be caring or respectful, to try and tease out what has (and hasn’t) been working from a group or program and write it into the structure for the next one. I’ve been floundering a bit, trying to find my feet in this area that I’m new in. One of the things I did a little while ago was write off to various organisations to see examples of their constitutions so I could get a better idea of how these things are put together. My favourite inspiration is still definitely the work over at Intervoice which has such wonderful community values. Anyway! Here’s some extracts of our working draft so far, please feel welcome to get in touch if you have any feedback you’d like to give. 🙂 If you want to read the full version I’ve hosted it online here.

Purpose

To promote better life experiences for people whose lives are touched by dissociation and/or multiplicity (and other similar experiences) whether directly (through lived experience) or indirectly (through a social/family/support role); respecting the diversity of ways in which dissociation and/or multiplicity can be experienced and the role that trauma can play in these experiences.

Values & Principles
Members of the Association acknowledge and value:

The principles of Trauma Informed Care

  • avoiding re-tramatising practices
  • respecting autonomy
  • supporting personal control
  • recognising strengths
  • healing occurs in a social and relational context

The Principles of the Recovery Model

  • person-oriented
  • personal involvement
  • self determination
  • hope

Equally the knowledge gained through lived experience and knowledge gained through training
Social Inclusion

  • Reducing disadvantage
  • Increasing social, civic and economic participation
  • People participating in decisions which affect their community

Building community by bridging divides and removing barriers to relationships
Collaboration with others to achieve common objectives
Diversity of the experience and meaning people ascribe to events and opportunities
Peer Work

Vision

We have a vision for a more inclusive community which understands and respects the experiences of our members

Objects (objectives)

  • Educate and raise awareness about dissociation and multiplicity
  • Reduce stigma and discrimination about dissociation and multiplicity
  • Support people who experience dissociation and their supporters
  • Create resources and facilitate access to resources about dissociation or that are ‘dissociation friendly’
  • Promote peer work and recovery
  • To directly address the disadvantage and distress experienced by those who live with dissociation and or multiplicity, and their effects on health and social inclusion.
  • To advocate for informed and ethical research that supports the further development of knowledge about dissociation and multiplicity and which informs recovery and or peer oriented practices.
  • To collaborate with other like-minded associations and organisations in the best interest of the Dissociative Initiative Inc.
  • To engage in any other activities which directly support these objects.

We’ve also had to try and define some difficult concepts. All the important terms in a constitution need to be clearly defined so that any reader can work out what you mean you use the word. I am keen to use definitions that are clear but also broader than medical/clinical terms because I know that different people have different understandings of their experiences of dissociation or multiplicity and I feel strongly that it is important to make everyone feel welcome and at home whatever frameworks they are using. I’m a little envious of the Voice Hearer’s movement in this respect because voice hearer is a neutral term, non-clinical and it presupposes no cause, diagnosis, or outcomes. Dissociation is tricky, poorly defined even in the clinical literature and clearly a clinical term. Multiplicity is non-clinical which is good but on the other hand reflects a whole spectrum of possible experiences which are also difficult to pin down briefly in a formal document. It’s really important to make these resources inclusive that they be defined around people’s experiences rather than diagnoses, but trying to capture that is not simple! Here’s draft one of attempts to do this!

  • “Dissociation” means a disconnection in areas which would normally be connected such as memory, time, senses which may or may not be distressing or disabling, but which impact on a person’s experience of the world.
  • “Multiplicity” means experiencing dissociative barriers between parts of self, occurring on a spectrum of degree, which may be experienced for example as voices, alters, lost time, a sense of being fractured or divided.
  • “Parts” may also be known as “alters”, have a separate sense of self and function independently within the one body, switching with or without amnesia.
  • “Voices” can be understood within the context of multiplicity as parts who speak to each other. Not all voices fit within the framework of multiplicity, and some voices can be parts who also switch.




Experiments with wax

Continuing to develop my final project for sculpture class this term – an arrangement of between 50 – 200 objects in a 3 m square space, I have decided on my object – candles! Not just any old candles, candles that have been modified and turned into tiny fountains of coloured wax! My studio is currently covered in wax 🙂

This starts by raiding the broken up crayons from my Bridges kit and melting them 🙂 (I replaced them with some of those twisty ones)

 Experimenting with different ways of melting the wax

 Experimenting with colouring the wax with pigments

 Experimenting with additives = pigments, glitter, beads, pearls.

 Finding ways of melting the wax without getting black carbon in it.

 Playing with colours and glittery things

The first full candle – wax studded with pearls, the colours are too strong and gauche.

 Second candle, limited palette, lots more white wax in the mix to create tones and variation. The wax is studded with freshwater pearls and glass beads. No glue is used, I find different ways of heating and setting the jewels into the wax.

My first pair, blues and green hues, pink dyed freshwater pearls and glass beads.

Got the green light from my sculpture tutor today, full steam ahead with the project! I have a lot of candles to create over the next two weeks! Very excited 🙂

Poem – Rage of the broken ones

From March 2009 Journal

Such sweetness and
a delicate dream of safety.

f**k safety.
I’m a freak
does my nakedness
not terrify you?
don’t tell me
how sacred this is
It can never be free
of darkness
for such as I.

I want to taste your sweat
hold me and
hear my soul screaming
don’t turn away
face it
face the darkness and 
the horror of it
the blood and
the shadows under the bed
the memories that
never quite fade
the nightmares like
gin traps waiting each night
stalking and hunting my soul.

Howl with me
paint blood on your face
my demented soldier
come join my war
just don’t try to tell me
it’s all okay
it’s all okay now
it’s all in the past
don’t tell me
you don’t
see it too.

Don’t tell me its pretty
let me see the fire in your eyes
taste the acid of my rage
do I scare you?
do I disgust you?
I will take you down
where the shadows are
where the nightmares sleep
where the broken things
lie in pain.

You cannot make this better.

But you can hold me.
But you can
let me scream.

New library resources

I woke up the other day to find a parcel tucked into my door from the postie. I love waking up to nice mail, it really makes my day. This morning it was a collection I’ve had on my wishlist for the library for awhile, a collection of talks from the 2008 Recovery from Psychosis conference in Perth. The set was selling for about $30 plus postage, then dropped to $17 with postage so I couldn’t resist any longer. Here’s what was in it:

  1. “Hearing Voices and the Complexity of Mental Health Issues from an Aboriginal Perspective” 
  2. Dr. Helen Milroy (Australia)

  3. “The Personal is Political” Jaqui Dillion (England)
  4. “Hearing Voices with Children” Dr. Sandra Escher (Holland)
  5. “Voice Dialogue” Dr. Dirk Corstens (The Netherlands)
  6. “Understanding Psychosis” John Watkins (Australia)
  7. “Making Recovery Happen: From Rhetoric to Reality” Ron Coleman & Karen Taylor (Scotland)
  8. “Recovery with Voices: A Report on a Study with 50 Recovered Voice Hearers” Prof. Dr. Marius Romme (Holland)
  9. “Recovery from Psychosis: What Helps and What Hinders?” Lyn Mahboub & Mariene Janssen (Australia)
  10. “Working with Voice Hearers in Social Psychiatry”  Trevor Eyles (Denmark)

If you’d like to buy your own, you can get it here.

My library has grown substantially over the past month or so, there are actually some books in there at the moment I haven’t read yet – most unusually for me! I mentioned the new additions in the latest Dissociation Link newsletter, but if you didn’t get it, here they are:

I’ll be posting reviews and recommendations when I have time. All of these are available to borrow for a refundable deposit, if you have any to donate or to recommend as an addition, that is always appreciated too. 🙂

Sculpture Development

Now that I’m feeling a bit better I’ve been getting stuck into some sculpture homework! I can’t tell you how much I enjoy this. Our major project for this subject is to make an ‘arrangement’ of approximately 200 objects – all the same type, in approximately 3 metres square of space. I’ve been doing a lot of research into “Assembled art” and been surprised to find some examples I really like. Traditionally, this has not been a type of art I’ve had a lot of time for, it seems terribly lazy to arrange some cups on a floor and say viola! But I’ve been entering into the spirit of things and playing with colour, shape and arrangements myself.

 I love books arranged by colour 🙂
Playing with candles:

 And cutlery:

My journal is looking a whole lot healthier, I decided to watercolour my design sketches in this one, ironing each page dry before I turn it (to stop them gluing to each other). This page illustrates the idea of arranging living bulbs in glass jars:

I have come up with a few ideas I’m really excited about. As soon as I get the go-ahead from my tutor, I’ll start buying and making the final project. Fingers crossed the one I really want to do gets a green light!

It is so good to feel back in the land of the living, I have been having a wonderful time! I painted my fingernails all stripy:

Sorted out a whole bunch of paperwork – well, went through it, took out the important tax stuff and put the rest in a huge pile in a cupboard anyway. My study desk looks great! Sarsaparilla helped lots:

And my lovely little geranium cutting is growing roots on my window-sill. I got all excited by the shadows cast by the glass when I was photographing it:

I’ve been able to get two loads of laundry done in this glorious weather and now I plan to work on tidying up Charlie’s grave and planting out my bay tree over it. I still can’t eat a lot of foods but I’m sure I’ll be fine in a few days.

Rainbow Boots!

I am at last feeling better after a nasty bout of gastro and celebrated by finishing painting my rainbow boots! I have just to heat set the paint and rethread the laces and I’ll be wearing these out and about all over town. 🙂

I love them! One is painted to look ‘smooth’ and one ‘furry’, just because. When I was a kid, I had a favourite pair of rainbow striped gumboots I adored. I was broken hearted when I grew out of them. Many years later I bought a pair of furry rainbow booties and wore them around the house until I wore the soles out completely. THESE should be a lot more durable! Hurrah!

Here’s what they started out looking like:

Then start adding paint:

And set to dry in the sun on the window-sill:

I’m sure these will be a hit when I go out face painting!

Recovery is not a one-way street

One of the things I’ve noticed in mental health (and to some extent the disability sector) is that we often clean up our autobiographies when it comes to the idea of recovery. I’m not talking about the Recovery Model here, which is simply gorgeous, I’m talking about the idea of recovering from something. Recovery is really messy. Really, really messy, in my experience. Recovery means having the ‘lightbulb moments’ (how I hate that phrase!) we all love to put in our memoirs, and it also means that three nights later we’re howling on the floor of the bathroom, wracked with fear and despair and convinced this will never get any better. Recovery is three steps forward, four steps back, two steps to the left and six to the right. Sometimes recovery means you are only losing ground slowly, under terrible circumstances, fighting like hell and only going downhill a bit at a time. That’s recovery. Sometimes recovery means you’re self-harming because it’s the only thing you can find that makes the suicidal urges go away. Sometimes recovery isn’t the smiles and sweetness we see in the brochures, it’s about trading an appallingly dangerous strategy for one that will kill us slower, because that’s all we can manage. And sometimes recovery is the way it looks in the movies, it is about light and hope and moving in the right direction and letting go of things that are tearing us apart. It is about healing and peace and green grass and kindness.

I give talks about my personal ‘Recovery Journey’ (ye gods) here and there. It’s a strange thing to do, and something I put a lot of thought into. I don’t want people to come away from them feeling overwhelmed or hopeless. Nor do I want to be part of the ‘spin’ in mental health, the messages I feel I’m supposed to be giving out that I do not believe and that my experience does not validate, such as “Just ask for help and it will all get better”. I know there are people for whom that has been their experience, and the last thing I want to do is deny their story. Their experiences are just as legitimate as mine. However, I also know far too many people for whom that has not been their experience, for whom the ‘help’ did harm. Life is complex.

Recovery is also complex. What we are recovering from is very different for many of us. What exactly is threatening to destroy us, to limit us, to cut us off from life varies tremendously. The strengths we use to recover are also highly individual. Recovery becomes pointless and limited when it is narrowed down to the same things for everyone, a one size fits all, eat your greens and get lots of exercise parental exhortation to conform. We can’t all recover in the same way, because we are threatened by different things and bring different strengths! Recovery works best when you tackle it with your unique strengths, whatever they are. For example, I write extensive journals which are mostly poetry. This has been absolutely essential to my recovery process. It is a safe place where I can be totally honest because I protect the integrity of my journals fiercely and anyone caught tampering with that process would be executed in a world of trouble. Ahem. In my journals I find the truth of how I was feeling, what was going on in my internal world at any time since I started when I was 14. I know that when I stop writing I have become silenced by something I am afraid to say. I feel very strongly about the value of a space to speak the truth, of creativity, of having a voice. I also know however, that not all of us are poets or writers. I am careful to encourage those who have these strengths to use them in their recovery, and not to impose the framework on people whose interests and talents lie elsewhere. If riding motorbikes is the thing that makes you feel alive, it can become part of your recovery instead. (Or as well as. You can be a poet-bikie if you want) One the most important principles of recovery I follow is to play to your strengths. Whatever it is you are good at, do well, whatever your unique personality strengths are – making friends, creating order, planning ahead, rolling with the punches, researching, expressing yourself, finding the funny side… they’re what you bring to the battle.

However, even doing this, recovery is not neat, not always uphill, not a one way street of ever increasing health. I think we do people a terrible disservice when we allow them to think this. Personally, as a peer worker, I am constantly caught in a difficult position between various of my values. On the one hand it is important to me to allow people to see the ‘rough edges’ of my process, the very real wounds I carry and difficulties I struggle with. Hence, this blog. I get stressed when I feel I’m starting to ‘spin’ mental health or the recovery process. Keeping things real and being truthful about the process is really important to me, and I get angry when people are set up to fail by being given the impression that if they just try hard/get help/take this pill, everything will be fine from then on. On the other hand, letting people see the very real pain and difficulty under this process can stress them out, make them feel anxious for me, and as a peer worker, can make them worry that I won’t be able to sustain what I’m doing and will leave them in the lurch. So I can get good feedback from both revealing and concealing distress – thankyou for being honest, it really helps, or thankyou for being professional and holding onto your own stuff to give me space to deal with mine. And I can get negative feedback from both revealing and concealing my distress – I’m stressed and worried for you, or you seem to have it all together while I’m a total wreck! I bounce about between values, and have learned that the line between is not only unclear – but what is helpful for one person is something the next complains about. The best path so far has been to listen to the feedback I get and adjust as I go, while keeping in mind that as a peer worker the attributes, such as respect and acceptance, that I am hoping to bring to my relationship to other people with mental illnesses, are also the attributes I have a right to expect that people will treat me with. Like recovery, relationship is a two-way street.

So, when I hear about services exiting clients who “aren’t recovering fast enough” I’m very angry, and I feel they’ve missed the point. When I have to fill in forms about my health and feelings to prove that I am recovering and the service I’ve been receiving is useful, I’m angry that a 5 point likert scale has more weight than my own thoughts and ideas about what is working for me and what I want. Even more, I’m angry that recovery is scored, at the idea that it shows a clear upward trend with no back steps. There have been times when a service has not been getting nice, joyous, increasing health scales from me, because I’ve been in severe crisis, where as far as I was concerned, still being alive at the end of the week WAS recovering! Recovery is more like a rollercoaster or a game of snakes and ladder than a “Go directly to GO” card in monopoly. Services that are genuinely client-centred and recovery model oriented will reflect that.

 

The Disability Tango

There are two sides to Sarah. No, this is not a declaration of multiplicity, rather a tension that I live with as person with a disability. One side of me is my potential. The talent and skills I have, my character strengths, experience, learning, everything I bring to my life that is an asset. Another side of me is my limitations. These are my illnesses, harm left by a history of chronic trauma, character weaknesses, things I struggle with. Something I’ve noticed that constantly frustrates me is that often people can see and relate to only one of these sides at a time. This results in a really unbalanced perception of who I am and often, a really unhelpful approach in relating to me.

Those who perceive only my potential often relate to me with frustration. A lot of pressure characterises these interactions. These people can see where I could go, and think that I am holding myself back or just need some encouragement to get there. They simply cannot conceive of my limitations, how real and binding they are. They push me to get into higher education, to write books, travel, give more talks, do more. They can’t see that I am already at my limit, doing as much as I can, as fast as I can. The effort it is taking to manage the cultural divides, to walk the world of community services when I am, at heart, a strange poet creature, the freak factor. The effort it is taking to disguise and contain the harm left by chronic trauma and abuse. I have had a personal goal not to cry at work, I don’t think I’ve ever made it more than three weeks without falling apart. So many triggers, coping with the bad days, trying to fit in, protect my credibility, look normal, contain my distress, not show the scars, do enough things that feed and nourish me so that I can handle the things that exhaust and deplete me. I am always at maximum output, because I have very big dreams and I have started a long way behind. It is very difficult for someone to come from where I have been and get to where I want to go.

So I work incredibly hard, and I live my life on the edge of a catastrophe curve, way out of my comfort zone, because that is where the change and growth happens. The level of pressure I put myself under is ridiculous and destructive, and the drivenness I live with is dangerously destabilising. Every strength run to excess becomes a weakness. My drivenness has got me through and kept me going when the world burnt down to the ground, but it is also volatile and costly and needs careful handling. But, and this is the important bit – it is still an asset, and it is a part of who I am now – I can no more get rid of it than you would pluck out your eye. I live with it and I try to live with it well. I will get better at it.

On the other hand, those who perceive only my limitations react to me with anxiety. Our conversations are frustrating because their reaction to every speed wobble is to tell me to slow down. Take on less, do less, cancel projects, rest more. What they don’t perceive is that when I was doing less, when I had almost nothing to occupy my time and no projects to pour my heart out into, I was not content. I was profoundly miserable. I need a sense of meaning in my life. I need projects to mull over, I need intellectual stimulation, I need things to do. I describe this to my friends using a dog analogy – my brain is like a dog, one of those really big, clumsy, active dogs. If it gets bored, it starts chewing on the furniture, digging up the garden, and inventing amusing games where it tears all the orange coloured clothes off the washing line because the neighbour rode his bike this morning and left the car behind. I need to keep it busy or it keeps me busy with amusingly intricate symptoms of mental illness, where I find myself re-categorising my freezer contents or developing new and interesting tics. Down that road, peace and harmony do not lie. Doing less is rarely the answer for me, and I feel incredibly frustrated by how often people want to slow me down – with the best of intentions! Want to send me back to bed, have me content living on my pension, resting comfortably within my limitations, pushing nothing, risking nothing, trying nothing, and never finding out just what I really can achieve. It’s stifling, patronising, and phenomenally dangerous.

Sometimes I fall apart because of things that would make anyone fall apart – I get sick, life crashes, pets die. It wouldn’t matter if I had spent the previous month working on my tan instead, these things would still bowl me over. They are nothing to do with my hard work or lifestyle. Sometimes, it’s true, I crash and burn because I’ve pushed things too hard. You know what? It’s MY life! I’m allowed to! If I accept that the occasional crash is the price I pay for pushing myself hard into recovery and growth and learning, then I’m allowed to pay it. My choice. I’m the one who lands in bed with headaches and joint pain and hallucinations, and I know this isn’t neat and tidy, but growth isn’t. It’s messy and strange and you learn on the fly. The thing is too, this isn’t my first rodeo. I’ve been really damn sick. I’ve been so severely dissociative that I’m blind and cannot feel touch. I’ve been so disabled by pain and fatigue that I’ve been in a wheelchair. I have learned the roller-coaster of chronic relapse because I pack a months worth of longing and dreams into the one good day I get and wind up in bed for weeks afterwards. I’ve been here, I’ve been on this carousel a lot. I’ve learned a lot. I’m a lot more tuned in, a lot more caring of myself, and a lot better than I was then. A day of pain and headaches as pay off for a week of accomplishments? You’ve got to be kidding, I used to pay a fortnight of agony for one trip to the doctor where I couldn’t get a close enough park. I am used to paying very high prices for the opportunity to live, walk places, be able to think clearly enough to read. This is nothing. And I have lost years of my life, I cannot wait any longer. Carpe diem quam minimum credula postero. Memento mori.

Health for me has been a complex balancing act, I’ve had to learn not to push the good days too far, setting myself back. I’ve had to learn that emotional stress costs me in illness, and that self care is not self indulgence. I’ve had to learn that intellectually understanding my trauma history in no way reduces it’s impact. I’ve had to learn that taking on board the cultural reactions to me; as a crazy person, white trash homeless, a battered wife, or a disabled person – will kill my spirit. I’ve also had to learn that if I become afraid of pain I will never push my limits and never get any better. I live with a degree of incapacity, pain, and distress, in order to live. Trading off painlessness and stillness for not accomplishing any of my dreams is a fraud.

The people who relate to me best are those who see both sides of me, my potential and my limitations. They don’t try to stop me working the way I work, they try to support me. Even if at times I drive them nuts, worry them silly, or get really snappy when they try to advise me. I’ve been alone an awful lot, I’m not used to community yet. I’m used to only relying on myself, and some days politely telling a well intentioned person to hang on to their advice because I don’t want it is stretching my patience.

What’s helpful is when people show me more efficient ways to do what I’m trying to do, and get it when sometimes options that seem easy and obvious to them are not workable for me. Some days I take the stairs despite the joint pain, because the PTSD is too bad to handle the lift. Almost all of my limitations are invisible, but I can tell you from inside here that there is always a reason I am doing things ‘the long way round’. And some of us have to learn things the hard way, we are stubborn and independent and scared of burdening other people. Don’t forget that’s part of why you love us in the first place! And think for a second what we would be like with the limitations and disadvantages we face if we weren’t so pig-headed. Believe me, this is the better of the options. If all else fails, remember you’re not perfect either and people still love you. 🙂

See more like this:

I’m sick

I’ve come down with gastro so I’ve had a very unpleasant couple of days. A locum doctor came out to the house yesterday but coundn’t rule out more serious conditions without tests, so I spent the evening in hospital having tests done and getting some water into me via a drip. The conclusion is that it is just gastro, nasty but not dangerous, so when my fever started to drop and on the proviso that I drink a lot of water they let me come home. This wouldn’t be such a big deal if I wasn’t needle-phobic, but I really hate hospitals, I hate needles, and I hate drips more than anything. The last thing you need when you have gastro is procedures that make you feel distressed and nauseous. Various meds are helping me keep water down so hopefully I will soon be feeling more human again. At least this didn’t happen last week I guess.

Sculpture – female head

I have missed a class in Sculpture which is unfortunate as the rest of the class were already halfway through this project. We had a lovely life model come and sit for us and our task was to attempt to create her head in clay. I had to work pretty quickly to catch up, and I’ve never done any modelling from life like this. I’m pleased with my efforts although I’m made plenty of beginner mistakes. The most obvious to me is struggling to get all the aspects of a face in the right proportions! Here is the result of several hours work:

Which started out looking like this:

Wrapping clay over a centre of newspaper ensures the middle of the head is hollow, which is essential for being able to fire it.

Next, starting to develop the basic head shape. They look really creepy at this stage!

Adding some of the details…

And continuing to refine.

She still needs work on her throat, a second ear, her hair, eyebrows, and all the skin smoothed over. I’m hoping to finish her next week based on some photographs the life model kindly let me take (she won’t be back next week) while I continue to work on developing the ideas for my final project in this class. It’s gone by far too quickly! I am really looking forward to doing more.

Poem – into the great Dark

from July 2004 Journal

Things swell within me like poems surfacing
to be born into the great Dark
and the silence that has swallowed me.


But all my hourglasses are empty
I have no more time to give
they are words I do not speak
the silence remains
and all my dreams are stained with grief.







Multiplicity and relationships

This is an area I’m often asked about; how do people with ‘multiple personalities‘ have relationships? (if you need a refresher on common terms, that link will take you to a relevant brochure) Well, there’s not one answer! Different people adopt different approaches to relationships that suit them. Non-romantic relationships, friendships, family, co-workers, may be a bond between one part or many or all parts in a system. Friends may be aware of the multiplicity or may think they are always interacting with one person. If they only ever meet one part, this would be quite an accurate perception, although they might be surprised by some of the ‘out of character’ seeming hobbies or activities their mate gets up to at other times, or a bit confused by mutual friends who seem to be describing someone quite different. On the other hand, friends may already be meeting and spending time with many different parts, but unaware of this. A pretty common conversation when a multiple discloses their multiplicity is for the friend to to expect to see them switch to someone totally different, and be pretty surprised to hear that they’ve already been meeting 5 different parts without knowing it.

Roles that require specific skill sets are often taken on by parts most suited to them, so for some people only one part ever goes to work, for example. In other cases, parts share roles for example 10 parts may all be involved in different aspects of parenting; organising, nurturing, downtime, play, deep-and-meaningful conversations etc. There’s tremendous variation from person to person about how this works out.

Romance is the area that people can be confused about. I’ve observed a few different basic models about ‘multiple romance’. A common one is that only part has romantic feelings and inclinations, they are the part that forms the romantic relationship, or the only part allowed to form a romantic relationship. So for example, lets say Roxy who has a team of 4 other parts is in love with Justin. One of the other parts sees Justin as a friend, one of the other parts is very young and sees him as more of a father-figure, one of the parts doesn’t particularly like him and prefers not to spend time with him, and one of the parts is rather maternal and protective towards him. Roxy is the only part who spends time with Justin in a romantic way. This is in many ways not that different to relationships between non-multiples – some of the time is spent romantically, some of it as companions, some of it apart etc.

Another model I’ve seen is more than one part having a romantic attachment to the same person. In this example, let’s say Cassandra, Tayla, and Michelle are all parts of one system who are romantically involved with Olivia, but the other 10 parts in their system are not. Olivia has a romantic, girlfriend relationship with all 3 of those parts that is different and distinct to each of them; their tastes, personal interests, and personalities.

Another model involves more than one part with romantic feelings, but creates certain boundaries to maintain a monogamous relationship. For example, Samuel is married to Beth, but other parts Sam, John, and Sally are not in a romantic relationship with Beth. Samuel, Beth, and the rest of the parts have decided that Sam and Sally can express romantic feelings for other people, provided the other people know Samuel and Beth are married and that no physical contact takes place. John is not interested in romantic relationships.

I’ve also seen a model closer to poly-amorous relationships (having a romantic relationship with more than one person at the same time), where more than one part has romantic feelings for different people, and separate romantic relationships are pursued. For example, Stacey, Kelly and Cindy are all parts in the same system. Stacey and Kelly are both in long term relationships, Stacey with Paul and Kelly with Shane, and Cindy enjoys a night out with a new casual partner now and then.

Some multiples have no parts with romantic interests and are contentedly asexual, others choose a celibate lifestyle for many reasons such as reducing internal conflict or healing from past abuse. The complexity of multiple relationships can make it challenging to develop good communication and team functioning whilst trying to maintain everyone’s connection with outside people. Sometimes not engaging romantic relationships is a good option, certainly it’s one I’ve found very necessary for resting and recharging.

Some multiples choose not to develop long term relationships but have casual partners instead. Some multiples have truly poly-amorous parts that have relationships with more than one other person at the same time.

There are also multiples who get into relationships with other multiples. In this case, there can be a very complex web of relationships as every part can have their own unique relationship to every other part. If neither person is aware of the multiplicity that can add an extra layer of confusion to communication. This type of relationship is not as uncommon as you might think, most multiples have felt very ‘different’ without being able to describe exactly how or why, meeting another multiple can be the first time they have functioned similarly to someone else and felt like another person. This sense of kinship can be a strong bond. I have noticed that often the both multiple systems will create pairs or teams that often spend time together and get along – eg a parental adult part of one person’s system may often come out around the child parts of the other’s system, and vice versa. These teams can be asexual, as in the parent-child dynamic, or romantic relationships, and they may be based on similarity; eg both the party girls going out together; or on complimentary pairs, eg a skilled teacher and a keen student. This may not work harmoniously, for example a parental part and a teenage part may fight constantly, or two highly traumatised distressed parts may set each off badly. Not all the parts may ever meet all the other parts, and if some parts go away for a long time, or one or both systems are polyfragmented – that is, having groups of parts that operate completely separately from other groups of parts, then chaos and distress can be caused when relationships are suddenly disrupted or severed. If some parts hate parts of the other multiple the relationship can be fractious or abusive, even if other parts are loving and invested. I have noticed that often one person’s system will ‘lead’ by doing the switching, and the other person’s system will generally ‘follow’ by adapting to those switches, this can be an organic dance between them or can create a power imbalance between them.

Having parts with different senses of their own gender or sexuality is not universal to all multiples, but it is also not uncommon. Sometimes the minority gender or sexuality in a system can feel very isolated and get ‘outvoted’ on being allowed to openly identify or act on any of their feelings. Because multiplicity is often overlooked as a possibility, many people have spent a long time suppressing parts that are very different to them, or being confused by co-conscious switching where sometimes they ‘feel female’ and other times they ‘feel male’. It can be a great help to not have to ‘choose’ one identity but to respect the diversity internally and find ways to reduce shame, stigma, loneliness and misery for all parts. It is particularly helpful, given this, if queer and transsexual support services are sensitive to the needs of multiples and able to provide friendly support.

Sometimes too, parts have formed with a strong sense of identity that has developed in reaction to trauma or distress, for example a frightened abused girl may split and form a part who is a big strong adult man. Later in life that man may conclude that his sense of masculinity was a reaction to a terrible situation rather than an integral part of who they all are. Sometimes parts change their sense of identity and their roles over time. In other cases they don’t. Sometimes parts become more alike, systems with straight and gay parts become bisexual, or an all male system with one female part integrates and considers that part to be his ‘feminine side’. There is more than one way that multiplicity can form, and there is more than one way that people heal, grow, and have relationships. What’s more, people change over time, and models that worked really well at one stage of life can feel restrictive or exhausting or depressing later on.

However unusual or complex these models of relationships may seem, the goal is still the same as any other human being – to love and be loved. To find a place and a way of being in the world that is not lonely, painful, or causing any harm to anyone else. It might be a bit more complicated at times, or involve conversations, decisions, and compromises with other parts to get there, but it’s a good worthwhile goal. It might also help to remember that everyone brings all their parts into their relationships too, their competent adult parts or cheeky teen parts or hurting, selfish child parts. All relationships have to navigate the whole complexity of who a person is, has been, could be, to love them as they are and find ways to create space for growth. All love is complex, mysterious, amazing, and takes lots of work. It is certainly possible to love and be loved by a multiple.

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