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

Oct 10, 2014May 8, 2015 / Sarah K Reece / 2 Comments

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

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

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

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

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

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

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

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

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

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

Do you need a ‘DID expert’ therapist?

Sep 16, 2014Jul 13, 2016 / Sarah K Reece / 11 Comments

This is an assumption I come across a lot. People with dissociation or multiplicity are supposed to need extensive, painful therapy, by an expert in the condition, to stand any chance at a decent life. Hogwash!

First, the caveats: can therapists be awesome? Oh you bet your last cup of coffee they can! Can experts who have trained highly in their field, who are passionate and informed, be a huge damn relief to talk to and learn from? Hell yes. I’ve already written a little about what the point of therapy is and how to recognise good therapy.

Having said that, I tend to beat the drum of ‘you don’t need a shrink to have a life’ quite a lot for a person who sees shrinks. Why? Isn’t this ridiculously hypocritical of me? Do I just not want to share my shrinks? Well, it goes like this. I used to see shrinks because I was scared and overwhelmed and had no idea what the hell was going on in my head/relationships/life. It was SCARY. Super scary. I was terrified of everything about the process and used to sit frozen on my allocated seat, hanging on every word uttered by the shrink who was almost godlike in status and had the power to uplift or doom me with a word. I discovered over time that the idea that psychiatry is a science, that diagnosis is an accurate and sensitive tool, and that shrinks are infallible and highly knowledgeable about the complexities of life and how people work on the inside is pretty laughable. I collected diagnoses like some people collect shoes. Pick your shrink’s speciality, pick your diagnosis. I’ve seen a lot of shrinks over the years. Some have been great, some have been average, some have been horrible. Most have been at least a somewhat mixed experience – partly helpful and partly not. Horrible shrinks have been as much, if not more of a threat to my mental health than other horrible people in my life.

Going off to see shrinks meant I had ventured into a world that was selling me a bunch of ideas about myself and my life such as: I was sick. That someone else’s ideas about me (after a 45 minute conversation) were more accurate than my own. That all shrinks should be trusted, immediately, and any reluctance or failure on my part to engage in that proved that I had problems. That massive power imbalances in relationships are helpful for people with trauma/abuse backgrounds. That having a good shrink is the most important thing you need in order to have a decent life after crap has happened (not friends, or housing, or access to a really, really good library, shrinks). That I needed ‘expert therapeutic help’ to be able to function. That I needed someone in my life who could take control away from me and put me into hospital. That multiplicity meant I was broken, damaged, or in some way inferior to other people. That someone else can heal my pain. That my history and pain is about my choices and my reactions rather than a broader social context. That my suffering is caused by a random breakdown in my brain.

I haven’t found any of these ideas to be at all helpful. I see shrinks now, because I value having a safe place to talk about really tough or very personal things. I love to team up on thorny issues, to pick their brains about information I don’t have, and to explore difficult territory without shame. I do the same things with some of my closer friends.

I don’t give shrinks any power over me. If I disagree with them, I argue. If I’m not happy with their approach, I leave and find someone else. If they’re ignorant, narcissistic, or in some other way a person I really don’t like the idea of spending an hour with, I don’t hang around and let them start playing with my brain. I run the show. I choose who, when, and how to engage. My shrinks don’t cure me. They join me in my process, or they get out of the way. I employ them to help me achieve my goals. They are equals on an exploration, they are not a surgeon with a patient waiting numbed beneath the knife. Am I discounting their skills in describing them this way? No! It takes a lot of skill to be an explorer. Any old hack can cut into a vulnerable person, and every other bugger is convinced they can run anyone else’s life better than they can. But exploring? Now THAT takes skill. You have to be able to not know answers, to explore new territory, to listen – really listen, to be equally vulnerable and human, to be able to be present in the face of pain, to construct theories and ways of understanding the world, and be willing to turn them inside out when they don’t work. Good shrinks are highly skilled, wonderful people, and I love working with them. I’m aware of the context of the relationship – that is, the ideas embedded in psychology/psychiatry/counselling etc that I disagree with, and I make efforts to prevent them from taking up residence in my brain.

Frankly, interacting with shrinks takes a lot of skills, and this is often not acknowledged! You need to be able to tolerate the power imbalance. You need to be able to assess them for safety. You need to able to walk away from the bad ones. You need enough assertive skills to be able to give them feedback about their approach. You need enough articulation to be able to communicate with them. You need a whole stack of courage, a whole huge stack of it, to actually make therapy useful by being willing to get into some tough stuff. You need the ability to be able to keep seeing the shrink as a human being – either when you feel dependant on them, or pissed off with them, or really excited about them (or in love with them), it really helps the whole process if you can not turn them into angels or demons in your brain. (in some therapies, I grant you, that is the process) Basically, you do a lot of work! In fact, there’s a tenant of therapy I love which is ‘Never work harder than your patient’. The person who does the work, has the power. As imbalanced as the relationship is, it is still a relationship. Some of us are better at eliciting useful responses from our shrinks than others. This is also a skill. You also need to be able to grieve everything your shrink is not and cannot be for you, that they can’t be your parent or partner or lover or take away what you’ve come through. Sometimes this grief is so intense it overshadows every other aspect of the relationship.

Therapy is not useful for everyone, and not useful at every point in life. Even the very best therapy. Nor are support groups, or books, or meditation, or almost any approach to pain except keeping on breathing. Therapists are human. Even the best ones make mistakes, have areas they don’t know much about, or use frameworks and ideas that get in the way instead of helping. I’ve learned a lot from the good shrinks I’ve seen over the years and I really appreciate that. But no shrink has had all the answers or all the skills. I’m glad I’ve seen a few, as frightening and stressful as it was to lose or walk away from a good one. It’s been liberating to discover that I can find new good shrinks and get something useful from their different approach, and that I can cope without a shrink and look after myself.

I’m often contacted by people who are frightened they can’t navigate DID without a shrink. A good shrink will help this a lot, yes, but no shrink is way, way better than a bad one. If bad ones are your only options, get the hell out of there! It’s messy, but frankly, so is therapy. If you think trying to make sense of DID on the back of your book reading, some rudimentary peer support online, and a lot of slowly learning about yourself is really hard, then spare a thought for all the people dealing with involuntary hospitalisations, parts who hate the shrink and go berserk whenever an appointment comes around, and littles who bond to them as if they’re parents and are heartbroken when they can’t come over and hug them after a nightmare… it’s not all roses! Having another person involved with your system can be tremendously supportive, but it’s also a whole additional person with their blindspots and history and reactions and crazy ideas to deal with.

I’m often asked what kind of therapy is best for DID… and I can’t answer that question because there is no therapy for DID. There are a bunch of therapies for people. Some of them help shrinks to be better, more courageous, more patient and inspired shrinks. Some of them have frameworks and approaches that are more useful for more people. Often the type of therapy is way less important than your relationship with the shrink. Some of the most useful therapy I’ve had was counselling through a sexual health clinic, which has nothing to do with DID and yet – conversations about shame, development, desire, abuse, power, and love – everything to do with DID!

Experts are also often not all they’re cracked to be. Being an expert in something sometimes means it’s hard to see everyone as new and different. You get used to seeing the same patterns and using the same frameworks. You have blind spots, which over time you become less and less aware of. What was once a guide, over time hardens into dogma. As an expert therapist, you speak with authority, so less people turn up in your office and contradict you, so you don’t get exposed to new ideas. People get used to your ideas and approach and don’t feel like spending money to sit in a room with you and be told their approach is wrong. The expert position can be an ego boost, and a pretty comfortable chair to sit in. Dismantling it from time to time can take a fair bit of energy and courage. Great experts do this! They are proud of their work and passion and history with the topic, but they wear the label of expert pretty lightly, and they keep in mind that none of it outweighs the expertise in their own life of the person sitting in front of them!

One of the psychologists I saw for a year had no expertise in DID. I spent about the first 6 sessions having to reassure her that this wasn’t a problem. As I said to her – you don’t need to be an expert in multiplicity – I am! Sometimes there’s advantages to learning with a shrink, because you find and fit frameworks to your experience, instead of the other way around. Good shrinks that don’t know anything about multiplicity but are willing to engage it anyway are worth 100 experts who don’t click with you, listen to you, or understand your unique quirks.

So, by all means, go hunting for a therapist if you want one. 🙂 Look for someone who has heard of the word dissociation, and who can spell it… But don’t panic if you’re among the masses of people who can’t find this, or can’t afford it. You have lived with this a long time! You have a massive store of wisdom within you, and clearly, a will to survive. And if you’ve found someone good but totally out of their depth – great. Go exploring together. Don’t believe everything you read, try stuff out, be open to new ways of thinking about things, and go make a life. If you’ve fallen on your feet and have a great shrink who is helpful and knowledgeable about DID, awesome! I hope it’s brilliantly helpful, try not to be too surprised if things don’t go exactly as you think they will, and don’t be too scared if you lose them or things change at some point. Get the most out of it while you can. 🙂

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

What is it to have child parts?

Sep 5, 2014Sep 5, 2014 / Sarah K Reece / Leave a comment

It’s many things; funny, beautiful, inconvenient, sad.

This morning it was waking when the front door clicks shut,
to realise she’s leaving like the last ship
pulling away from shore.
There’s a teddy left on her side of the bed and a house
so stuffed with emptiness I can’t breathe.

It’s calling out her name and running
to the door to blink through tears
and try to memorise her face, to beg
a last cuddle before she walks into her day
and we creep back to bed
where the nightmares are waiting.

I love public speaking

Sep 1, 2014 / Sarah K Reece / 2 Comments

Wow, what a day. What a week! Today I went off to talk to a bunch of students about my experience of mental health recovery. I do this particular talk about every 6 months to the new group of students, and as I’ve been giving it for a few years now, it’s really interesting to notice the changes. I reworked a lot of it this morning and updated both the artworks used to illustrate it and the poems used. I remember the day I decided to be open about my experiences of DID, instead of talking only about PTSD. I remember deciding to openly discuss the contradictions about my story and experiences that are so easily missed in a snap shot presentation of my life. Today I pulled out my diagnoses as a focus and talked instead about key experiences – dissociation, multiplicity, voice hearing, psychosis, trauma recovery. I am really comfortable with the development I’ve done.

It went down really well. This one’s a long talk, over an hour, and that can be insanely dull, especially if everything’s done in chronological order or read off a power point. No matter how many times I’ve shared, it’s still an intense experience. My hands shake and my heart races. I remember good advice from an amazing public speaking trainer I saw once – ‘don’t interpret those reactions as fear, think of them and speak of them as excitement’. Fear freezes us, but we can ride the adrenaline waves of excitement. It works for me. I concentrate on not talking too fast (I’m so bad at that, especially when the time frames are tight), making eye contact, being present. People watch me avidly. Sometimes they cry. I’m so moved. I want to hug all of them. I want to sit them down and listen to their stories. I want to hear why they’re in this course, where they’ve come from, what they’re scared of, what they’re hoping to do with their lives. They all have stories.

I can’t talk about the past without going there on some level. I read poems about homelessness or loneliness and there’s a cry in my chest and a cold wind that blows through me. I take people there and I walk them back out again. There’s a lot of courage needed for people to be willing to walk down that path with me, a lot of trust that I won’t leave them in the pit with the bodies, that I’ll help them make some sense of the pain. People are amazing.

I’m home now, on a high. This is predictable, there’s a euphoria for me in connecting with a bunch of people like this, in such intimacy with strangers, in sharing what had been the nightmares and the failures of my life and in doing so, transforming them into sources of wisdom and hope and inspiration. It makes meaning for me.

A crash usually comes later. At some point, there’s the predictable exposure stress, the sense of rawness and loss, the shattering impact of finding that meaning and hope and connection do not erase pain, that I’m still vulnerable and still haunted. I know it might be coming but I’m still flying, soaking up the high for as long as it lasts.

This time it’s special because I’m working so hard on my business at the moment and talks are a huge part of that. Getting such warm feedback is a huge boost that I’m on the right track and this is possible. I’ve been quiet on the blog this week because I’ve been so busy writing new content for my websites and working on promotional material for my talks. It’s a huge project but I’m well into the zone, working every moment I get on it all and feeling it all flow. It’s coming together in my mind so well, what’s been confused and chaotic is becoming clear and I can see the next steps. That’s amazing, because I’ve felt lost and stuck since I started at NEIS and found myself embroiled back in the admin based assessments of the small business cert 4. Now I’ve hit the wall and put that to one side, I’m flying again and the business is developing daily.

If you want to check out my works in progress they are all linked to from this hub site: sarahkreece.com

My Business Site – I’m taking a leap here. This is the site for all my face painting and custom art, I’m planning to properly add all my mental health/queer/community sector talks and workshops here. At the moment that aspect is undeveloped because I’m still working on the final draft of my master version of the pdf that will be used to advertise my talks. Once it’s more complete, I think I’ll make this my official hub site and close the other page down, or redirect it there.
The Dissociative Initiative – many of you are familiar with this, but it’s been in stasis since my board collapsed. I’m updating it and linking it to everything else I do.
The Hearing Voices Network of SA. I’ve wanted to start this resource for years, and tried to pull together interest from local people without success. So I’ve decided to host it myself and then liaise with the interested parties. Why not? There’s nothing to stop me, and we need it!
Homeless Care – This one is actually my partner Rose’s fault lol. She got inspired and started a facebook group then picked up lots of work and got too overwhelmed to do anything about it. I’ve decided I’ll take it on as I’m feeling pretty comfortable about being able to hold the space – assemble the website and start some gatherings to work on resources and projects.

Feedback is very welcomed, as is any assistance for the free networks. Or passing on my details to anyone who might want to hire me. 🙂 I don’t know if I’m going to be able to achieve my goal of self sufficiency, but I’m going to work on it. At the very least, I now have the dignity that comes with having a public identity – an answer to the question ‘What do you do?’ that doesn’t involve talking to strangers about chronic pain and illness. (I try to never ask this question, it always hurt me so much. I try to ask about people’s interests/passions/hobbies instead. Sick people still have those.) And at last, I can see how to support my free resources, keep them alive and gather support for them. I’ve had so much trouble feeling uncomfortable about marketing myself, about asking for money and moving into a ‘small business’ mindset, but I’m starting to see that for someone who is disabled and dependent on welfare, this is also about dignity. I have a right to use all the skills I have to make myself as independent as possible, to care for my family and prepare for my child. It’s not greedy or grasping, I’m not cheating anyone or looking for pity. It’s not my fault that industrialisation has changed the nature of ‘work’ in ways that are extremely difficult for ill or disabled people to fit. In a different time I would live in a family or tribe and help out as and when I was able to, and give my all when I was well. (assuming I didn’t just die of course) In my own way, I’m doing my best to be part of good changes in the world. I will do what I can, and what I can do will be enough.

Poem – Finding the end

Aug 23, 2014 / Sarah K Reece / 2 Comments

Sometimes I must let thoughts swirl all unformed, nebulous, stars seen through water, no patterns or constellations, just points of light.
I wait and I follow
One thread and then the next, one path
Then the next through the labyrinth, as
The kaleidescope gently tilts and the light changes to green
Then amber, as floor becomes wall and then ceiling.

I found a limit this week, an end of myself, of my capacity
To believe, to hope, to conceal my terror like stuffing all the things
I don’t know what to do with into a spare room and closing the door
Like so many times before it isn’t like the ending of a film
Or a piece of string or the daylight but
Like stepping out of bed in the dark and padding down the hallway
Opening the kitchen door to find
A gaping hole where once there was a floor
A cliff that tears downwards and a dark wind rushing up with the smell of water
The house, the earth, the country itself all fallen into the sea.
That is the coming upon the end of my strength.

At first I am hysterical.
I howl like a dying animal and force my palms into my eyes as if to stop the rain
I take my body and my mind like they are metal I can beat upon an anvil, hot with self hate, and turn into a bridge between
Who am I now and who I wish to be
Who I owe to my loves to be, to my child yet unborn, to the world.

Sanity returns as we start to topple.
I do what all do who stand upon cliffs, and become still.
And there’s a place on the edge that’s without pain
Or joy or hope or love. Blood no longer runs in veins,
There is no more screaming. I look
Perfectly normal. Where my heart used to be
Is an empty restlessness, the dangerous torment of the numbed.
I am alone on a dead planet.

Later I take a step back. My thoughts return
Like gulls wheeling over me. All the threads snapped. Only fragments remain. A memory of skinned
Raw anguish from which all decent people flinch.

I draft no plans and write no treaties
Just rest in the night with the gulls wheeling over
Listening to the tiny whirring of the compass inside me
That will say ‘that way’ and then there’ll be
No night or cliff or screaming in my mind
Just a path and the moon and the next step waiting before me.

Staying a person within the mental health sector

Aug 15, 2014 / Sarah K Reece / 11 Comments

I’ve just read this article 20 Ways to Combat Rankism, by Robert W Fuller, and it resonates with me. I’ve been talking about this issue of what I’ve called a class divide in mental health. I’ve watched organisations that started as peer based, consumer-led, with a lot of flexible cross over between the service users and service providers become dramatically divided into distinct classes. The service users and providers become totally different from each other in dress, language, culture, attitudes, expectations of behaviour, and places they are permitted to access. Most of the power in this unequal relationship resides with the providers, who also bear responsibility for ensuring good outcomes to justify funding. These groups become rapidly polarised when mutual relationships are not holding them both aware of their shared humanity. The roles of provider and user can each be rigid and dehumanising. Those of us who are service providers find ourselves trying to achieve two contradictory aims – preserve the system of professional divide between users and providers, and build and strengthen communities.

Please don’t misunderstand me. We’ve created our therapeutic distance for very important reasons. Whether the system actually works is another conversation, but the needs and challenges are very real. I don’t have simple answers. But I am deeply disturbed by the divide. When I started working as a peer worker, I thought this was an answer, that we would be able to bridge this divide, those of us who are both service users and providers. That we would bind the two communities back to one whole. But that’s not what I’m seeing. What I’m seeing is a whole community of peer workers who are paralysed by their basic human need to keep their own job. Who are being asked to be braver and wiser than everyone else in the system who has more voice, more power, more status, and more money. I’m also noticing the change of the idea of what a ‘peer’ is. I’ve sat in meetings where Peer Work was described as a career path. As it’s fitted to the mental health model and turned into a job, it’s being torn away from its roots; a place of shared humanity. Back when Soteria was running, the peers who supported people having psychotic experiences did not themselves have to have experienced mental illness. They were peers because they were people.

I wrestle with all of these things because I’m no more immune to their influence than the next person. Do you not think that after years of being poor, bullied, marginalised, and homeless that I cherish having a voice? An income? That somewhere inside I laugh when people who ignored me as a patient pay money to listen to my ideas now that I’m refashioned into a public speaker? I keenly feel the paradigm and the tension of my place within it, allied to both groups and refusing to rescind my membership with either. I was told by my PHaMs worker once that my attempt to insist on my right to maintain the friendships I had with other service users was pointless as it was clear that I was nothing like them and would “leave them all behind” as my career developed. The last time I sat talking with a friend who works at a local NGO mental health org, a staff member popped their head around the door to inform us we needed to leave as we were the last people present and it was now against organisational policy for a staff member and a consumer to be alone on the premises. I had not until that moment considered that I was in that context classified as a service user. I have tried to create change within these systems as a service user, but the total lack of power and voice, the constant dismissal by those who could make changes but do not have any comprehension of the subtle violence their systems do to people finally convinced me that it was not possible to do what I was trying to do. The system does not accept dual citizenship – I may train all I like and create and maintain as many services as I wish but if I fight for my right to make friends with whomever I choose and if I regard service users as my peers I am never to be one of them.

So we have two groups of people, disconnected from each other. They do not use the same entrances to the buildings. They do not share the same toilets. They do not lunch together. One usually arrives by car, the other by bus. On one the burden of healing the sick is placed. On the other, the burden of recovery. There is often conflict between the two, sometimes subtle, sometimes open abuse or violence. Those who seek to bridge the gap are often alienated by both groups and exhausted. Many leave the system. The culture is fatally flawed.

I go and give big presentations in front of important people in big shiny buildings and I feel the lure of power. As a young peer worker, some of my work was being done while at night I slept at the local backpackers. The divide in my world, and in my mind, was overwhelming. One moment I would be treated as a loser, a failure, a pathetic social parasite by a bored, tired, angry worker at the local welfare office. The next I would get a standing ovation and a hundred hugs from an audience. My life flickered between being nobody and somebody. The experience was agonising and illuminating. I also felt the structures, the hierarchy, the expectations and the culture, set itself up in my head. I started to see people through this lens of nobody or somebody, to try and attract the somebodies, to give less time and attention to the nobodies. And to panic that this would cost me, that success in my goals, of employment in mental health, would undermine my values and turn me, slowly, into somebody I do not want to be. I’m not strong enough. Some people are, but I imbibe the cultures around me. I sink into them and they into me and years and years later I’m still crashing into them into my mind. I adored my local Hearing Voices group because I walk into that space full of people without power or voice or money and we would be kind to each other – nothing more, and I would feel like a human again. Not a nobody or a somebody. Just a person like them. It was like being able to breathe again after coming off some hideous drug. It makes me cry to think of it. They became my grounding point, a place where I felt real again, somewhere to return to after debasement or accession.

Now I’m in the NEIS scheme, working to set myself up as a freelance artist/writer/poet/community builder… And I don’t know what I am. I’ve investigated my insurance options as a freelance mental health worker and it’s possible. Mind blowingly expensive but yes I could set up privately to do my talks, workshops, groups, even one to one support. It’s about 3 times the cost for me than for someone who has a degree in the field. And for awhile I wondered if I should go and finish my psych degree to make life easier. Then I realised, I don’t want to be a psychologist, or a psychiatrist, or a counsellor. I never really have. I want the information, the access to materials, but I don’t want to practice the way they do. I don’t want to do therapy. In fact, I’ve been fighting for the right not to have to for years. I don’t want to take my place in this hierarchy presented me. I don’t want to choose between being a user or a provider. I don’t want to pick which side I’m allowed to find my friends from. I want to be an artist. I want to help people be more free, more informed, and more connected. I want to be a peer worker. I want to be a member of any group I help to run. I’m tired of the roles and being dehumanised by them. I don’t want to be a somebody or a nobody, I really just want to stay myself. I want to help other people be their own selves. That’s probably not very useful to write on my professional indemnity insurance application. But I guess I don’t want to be a professional. On the other hand, I do need to make a living. And there’s the clash. I do need to understand and work within the legal and cultural frameworks I’m presented with. I haven’t found a path yet. I’m still hacking at the jungle and hoping there’s a way through. I’m still trying to get out from under the paralysis that trips me up when I feel like success is as much a threat to me as failure.

Fat Shaming

Aug 3, 2014Aug 3, 2014 / Sarah K Reece / 2 Comments

Someone I hardly know has just had a go at me on my facebook page for daring to mention that I’m sick when I also happen to be overweight. Fat shaming is pretty endemic in our culture, and random attacks from near strangers are often the price I pay for the public way I’ve chosen to live my life. Being open on a public blog and willing to ‘friend’ strangers unfortunately means that every now and then a kind of critical mass builds up and those who have been silent in the wings decide now is the time to speak out. It’s happened before and it will happen again. It always hurts, it always makes me angry. There’s a sense of betrayal about having honesty and openness rewarded with judgement. But every time I’m also so aware that I’m actually okay. This kind of bullying is now reasonably rare in my life. I don’t let the bigots and the bullies near me anymore. People who scare me, shame me, put me down, or abuse me don’t get to be part of my inner circles! How many of us can’t say this? How many of us suffer because this happens, not with a stranger over the net, but at the dining table every Christmas, or in bed with our partners? I’m pretty tough, and I’ve got great friends. I’m not drowning anymore in negative messages about myself. I’ve escaped those environments and left those people. Every now and then I just have to cull my online networks a little to prune out the people who don’t get it, and who think my patience is a free ticket to hurt me. It’s not such a big deal for me, but it’s a huge deal for so many of us.

Sometimes I’m harassed for being openly gay, and that can range from daft to really frightening. Sometimes it’s about my alliance with some kind of minority group. Today it’s ostensibly about my weight. And of course, I can argue. I could justify myself in so many ways. I could talk about how I suffered severe joint pain back when I was a healthy weight, in fact much worse pain than I do now, pain so crushingly severe I was in a wheelchair. Exhaustion so debilitating I could not raise my arms over my head for more than a moment. I needed assistance to wash my hair, at times even to dress or eat. I could talk about how my weight is partly the result of medications I have to take to manage another chronic pain condition. I could talk about how my health is actually better now, at the weight I am today, than it used to be when I weighed less, how my blood cholesterol is lower and my diabetes indicators have gone away! I could talk about our lack of understanding of the relationship between weight and health, how our assumptions are wrong and profoundly unhelpful. I could talk about my history of an eating disorder and how tender and sensitive my relationship with food and my body can be, how vulnerable someone like me is to shame and self loathing. I could talk about how my weight went up during periods where I was homeless, on the run from domestic violence, and doing intensive, exhausting, terrifying caring for a suicidal family member. How issues like weight become so irrrelevant when you don’t have anywhere to sleep, when you’re sitting up late again eating service station food because you don’t have anything to cook on, and the person you care about needs to be watched so they don’t try to kill themselves in the night.

But really, so what? So what if my extra weight was simply because of my lifestyle? So what if all my medical problems stemmed directly from my weight? I don’t actually need all these justifications to say that fat shaming is wrong. I’ve worked in Eating Disorders. I’ve worked with people who starve, binge, cut themselves, dissociate, and put their lives at risk. I’ve worked with people who were beaten as children when they gained weight at the weekly weigh-in. People who were starved through deliberate abuse or chronic neglect. People who spent parts of their childhood stealing food and eating out of bins. People who tried to cut out their own fat at 12 because they were being bullied. People who compulsively hoard food because they so often went without. Forget about weight being a health issue for a moment. There’s some grey area about how exactly all that works. What I can tell you, is that shame is lethal. It kills people. It profoundly distorts our sense of self, of being an okay person. Fat shaming makes people hate their bodies. It makes us embarrassed to eat in public. It makes us burn our skin. It makes us hide food in secret stashes that we consume with the guilt and craving of an addict. It makes us starve ourselves. It makes us refuse to be naked with our partners, or unable to imagine we might one day have a partner. It makes us settle for terrible partners who fat shame us and abuse us, who make us feel worthless and lucky that someone is willing to put up with us, and even to have sex with us. Even if sex hurts, even if it makes us feel degraded and scared. It makes us scared that we’re being passed over at work, constantly judged as lacking in self control or self respect. It makes us obsess over the weight of our children in ways that shame them also. It makes us kill ourselves.

So, if this is about health and caring for people, don’t shame. Don’t make someone’s weight the first or second ever conversation topic. Don’t assume that those of us with health problems and illness have them caused by our weight, it’s often more complex. Don’t assume laziness and self indulgence. If you want to demonstrate your caring, be open, listen, openly reject shaming. Acceptance and compassion are the places where people might open up to you. Public struggles like weight can be exhausting and leave people tremendously vulnerable and isolated. Be friends. Be vulnerable yourself. These are the places where people feel safe enough to share and ask for help. These are the ways we can start to have conversations about what’s going on and how you might be able to be a support. Not all of us who are overweight have shame issues, other things can be at play. Sometimes a kick in the pants for a person who thinks they’re immortal can be a help. But many of us are vulnerable. So unless you know us very, very well, and know how to pull off a kick in the pants without shame, don’t ever kick. Reach out.

Fat shaming isn’t about caring. It’s partly about making yourself feel superior to a clearly visible group of people. It can be about narcissism, it can be about insecurity, it can be about shame! All the traumas I’ve just described can make people engage in fat shaming too! Whatever the cause, it leverages your own sense of being okay at someone else’s expense, and that’s really the heart of bullying. In this case, I think it’s also about silencing people with disabilities. I have often been told that I’m not supposed to share my bad days. People are uncomfortable with hearing about things like chronic pain, sickness, vulnerability, incapacity. It’s scary to think it could happen to us. It’s awful to feel bad for someone and not be able to fix it. Being exposed to someone’s disability can leave us almost vibrating with this urgency we can’t manage. We want to fix it or run away, and often we manage this by blaming the person or shaming them into silence. I share so much that’s positive. So many good days, so much about my thoughts and ideas that are hopeful and excited and full of healing. The ratio is a very good one, far more positives to negatives. But sharing that I suffer from chronic pain can still make people tremendously uncomfortable. It’s hard to walk alongside those of us who have been forced to become living reminders of everyone’s mortality and fragility! Silencing becomes a way to maintain cultural denial. It keeps things comfortable if people like myself don’t share. If we’re still shut away in back rooms, or locked up in institutions. In some ways it’s almost worse if we can be articulate about our experiences, if our sharing evokes a kind of unwanted empathy. It’s painful. People who don’t know what to do with that pain can cope with it by lashing out. I get that!

But we need people like me to talk. In fact, we need everyone to talk! We need to listen to each other and hear the tremendous variety of life experiences out there! We need to know that we are mortal and fragile, these are things that make us kiss our children before bed every night, that makes us hold our tongue when we want to spit cutting words at someone. We remember that we’re human and that life is often painful and overwhelming, as much as it is also beautiful and amazing. None of us need more shame. None of us need to feel alone, afraid, trapped, less than human. We all deserve to live our lives as openly as we wish, to share our experiences and be known, to be vulnerable and to love with courage. Don’t shame each other. Don’t let those who do shame you into your heart. You have the right to feel worthwhile, you are no more, and no less, than any other person. In our imperfections are the seeds of our humility. We can meet each other with love.

Happiness

Jul 20, 2014Jul 13, 2016 / Sarah K Reece / Leave a comment

Rose and I are away again, house sitting in the hills with Zoe. It’s bliss. Yesterday friends visited for fire baked spuds and card games. I’ve spent today sleeping or reading in front of the fire. Rose is spoiling me. Last week was busy, I’m still embroiled in tax paperwork, my cert 4 in small business management started and there were some stressful emotional days. By Friday night I was teary with exhaustion and pain was making me short fused. The effort of getting out of the house, especially with the dog crate and so on for Zoe, was almost too much. But we did it, and it’s been wonderful.

I was thinking the other day how normal it’s become to be multiple. When Rose I go shopping, and I switch to a little kid in the lolly aisle, we are both so unconcerned. Mostly people don’t notice, and we don’t draw attention to ourselves. But we’re not afraid or ashamed either. Those who do see something different probably assume that I have some kind of intellectual disability or delay. I’ve long stopped being distressed by that or feeling ashamed of being seen that way. So what? In some ways, I am ‘delayed’ at that moment, by about 25 years. 😉 I’m not afraid of being thought of as disabled because I don’t think about disability the same way any more. Me switching is so normal for us, not a big deal, not a source of shame or anxiety. (I switch many times a day, and my system ages range from 5 up and cross various experiences and expressions of gender – most who don’t know me well would not be able to tell that I’ve switched – Rose usually can)

This is such a difference from the years I was terrified of someone else finding out, from my first disclosures where people reacted so badly. So different to being diagnosed with a “terrible disorder” that would prevent me ever getting work, that would ensure I spent years in and out of psychiatric facilities, that would wreak havoc on my relationships and require thousands of excruciatingly painful hours in therapy for any hope of peace or happiness. I feel like someone who was told they would never walk again who goes dancing on Saturday nights. They got it all so very wrong, and I’m so glad I didn’t listen.

So I’m different, in some ways that people can’t see, and in others that are at times visible. So what? Welcome to the world, it’s a very diverse place. I’m not a freak show, and I’m not scared of a conversation about dissociation with a checkout operator either. I am so blessed, so at peace. I don’t live like a spy in a foreign land any more, watching everything I say, always concealing some truth of my identity that would destroy everything. How much of what we put down to the ‘mental illness’ is the stress of this way of living? The loneliness of it, the chronic, grinding fear? I’ll never forget having new members to Bridges, the group for people who experienced dissociation and/or multiplicity that I ran for several years, weeping when they first attended, because it was the first time in their lives they’d met anyone else like them. I’ve been lucky to know and care for and love and learn from so many people, and so many fellow multiples over the years. I’ve made mistakes, I’ve lost a few along the way, but I’ve learned, I’ve been humbled, I’ve tried to take the lessons with me, the hard won wisdom whether through success or terrible disaster.

I feel set free from those old, dire prognosis, and I hope my work, my choices, the way I live my life, also helps to set others free. My life is not without pain, I live in chronic physical pain, I have experienced extreme emotional anguish. My story includes grief, darkness, suffering. I live with ghosts and old wounds that are very deep. I am not ‘recovered’. But I’m also not waiting to get better before I feel alive, or at peace, or hope. All lives touch pain, tragedy, disability, loss. Some more than others, yes. I don’t have a good life in spite of multiplicity or illness. I have a good life because I’m here, present in it, drinking it in, the sorrow and the joy, the pleasure of driving myself hard at work, and the bliss of a day reading by the fire. The warmth in the arms of my lover. I love and I am loved. It is my heart that is the source of my greatest pain, and my brightest happiness, and in matters of the heart I have been fortunate indeed.

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

Links between childhood trauma & adult chaos and hoarding

Jul 18, 2014Oct 29, 2014 / Sarah K Reece / 8 Comments

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

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

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

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

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

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

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

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

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

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

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

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

Freedom

Jul 7, 2014Jul 7, 2014 / Sarah K Reece / Leave a comment

I sat down yesterday and wrote about how my world is opening up, changes in my system and approach, how I’m managing the ‘adult’ world of tax and business and admin completely differently and with far more skill. Then I found myself going back to old posts about my experience of psychosis, reading my sharing of the darkest nights of grief and loss. There’s a disconnection at first, that familiar awareness that I’m reading someone else’s writing, reading about someone else’s life. And then the growing recognition of us, that tiny glimpse of how far we stretch – from the darkest poet to the lightest administrator. And I find myself marvelling how freedom has changed everything for us. Where the literature wanted each of us to compress, to move closer together, become more similar, compact ourselves into a box marked Sarah and never step out of it again, we have found life in the opposite process. I am more ‘mentally ill’ and yet more functional. I have parts, and psychotic episodes, and days I shut myself in the house and do not speak, and sometimes I wear wrist poems as dark, painful souvenirs of a scream that sounded in my skin at 3am. And yet, I’m getting up and doing my tax with a clearer mind than I can ever remember. We’re getting out of each other’s way. We’re sprawling, stars filling the sky from horizon to horizon. I don’t have to choose one colour, one perspective, one way of living, one identity, one name, one life. We are moving around each other and enriching each other’s lives instead of stealing time and fighting for control. There is trust and sorrow and joy and anguish and pain and nostalgia and hope. This is not what it is to be a multiple – it is what it is to be a human. This is what life is, beautiful and tragic. I’m not turning into a ‘recovered patient’. I’m no one else’s success story. I’m not always comfortable to be around. I’m not leaving anyone behind, or killing anyone, or carving anyone out of my system. I’m finally keeping regular sleep hours but without excluding the poets and night people all the time. (that’s still a big work in progress) We’re building a business and a life as a structure that protects what is vulnerable and precious and unique about us, instead of excludes it, relies on pretending it doesn’t happen, or exploits it. In a weird way, it feels like integration, without fusing us back to one. It feels like I’m finally figuring how to grow up without dying inside.

So much to tell you…

Jul 6, 2014Jul 6, 2014 / Sarah K Reece / Leave a comment

Wowee what a week! I have so much to tell you about!

Rose and I have just come back from a couple of days away in the bush, celebrating a friends birthday. It was a bit hectic fitting it around work (still doing too much work on my weekends) and only possible at all because kind friends came to our rescue last minute and dog-sat Zoe for us. 🙂 But we had the most wonderful time connecting with a new bunch of people. It’s often still so novel when we’re in a room full of queer families, we’re used to being ‘representative’ but in a space like this we weren’t the queer couple, we were the young couple among many other families queer or queer friendly, with kids already. Awww it was nice! Having conversations about donors with other people who have been there, being part of a beautiful little community of people navigating the complications and joy of rainbow families. The location was spectacular, with clear starry skies and kangaroos outside the windows. Rose and I feel so at home out in the scrub, and sharing meals and bathing kids in a tin by the fire, it was a wonderful taste of things to come. We fell asleep on the couch by the fire, watching the stars out the window, and soaked up the beautiful countryside on all the driving. We’re now planning to do something similar for Rose’s next big birthday – rent a large space somewhere beautiful and have friends and family visit us. It’s a sign of how much things have been changing for us that we can even consider spending money like that – Rose’s job has been a blessing and my business plans are looking hopeful!

Life continues to be whirlwind! I’ve written my first business proposal – for all my plans around freelance mental health work – and have just been accepted into the free Cert 4 in Business as part of the NEIS training – a government scheme to provide support to people receiving some form of welfare who wish to start a small business. I’m going to be doing my first online study, which is exciting because it will be a test run to see how well that format suits me… If well, then it opens the doors to finishing my psych degree or any other study that keeps my researcher part happy and not left to pick wallpaper off the walls. 😉

So this will take three months and overlap somewhat with the Cert 3 in Micro Business I already have. However I’m still keen because I’ve been finding that with all the work I’ve been doing lately on mindfulness and my anxiety levels, and having finally seen a tax accountant to get all my overdue paperwork sorted out, my mind is so much clearer and I am coping with and processing this kind of information so much better. I am gradually transforming into a business woman! It’s been a long, tiring, amazing, complicated process, but I am watching it happen. It takes a lot longer than people seem to think to regain mental space for skills like this after crisis and homelessness. I think the sexual health counselling also made a huge difference, in that I am feeling less out of my depth, less like these things are part of an adult world I don’t and can’t understand. I’m not corporate or comfortable with bureaucracy by nature, but I’m finally seeing past the bluster, the incomprehensible language, and really there is only a little man behind the curtain. For the first time in my life I am doing admin without panic attacks – in fact without even stress. I’ve had to rewrite my excel spreadsheets for expenses/income/profit and loss to accommodate changes recommended by the tax accountant, and although I could certainly think of more fun ways to spend my morning – and also appreciate friends who help trouble shoot for me!! – it wasn’t a big deal. Which is blowing my mind. I’ve also opened new bank accounts, started new systems for tracking receipts, and had possibly the most productive week in my life, lol.

I’ve overhauled my Glitter Tattoo kit and completely restructured how we store and display them at gigs – I had the change to test it a couple of times over the weekend and it WORKS so well! I’m enjoying the realisation that I am good at setting up systems that work and tweaking designs and procedures to make them easier and more efficient. I now have nearly 200 tattoo stencil designs that I use at gigs, which needed a very different set up from the 40 I started out with a year or two ago. It’s these little successes that make me feel so self-satisfied, ha haa. 🙂 And I’m thankful for that because it’s helped to buffer other moments this week where I’ve felt very vulnerable or disappointed, like my new little fish dying unexpectedly, or getting a stack of abuse from the member of an online support I volunteer admin. It’s amazing to shift from the glow of contentment to feeling so fragile and hurt, but I seem to be bending with the wind and bouncing back better.

I’ve also been doing a lot more to be aware of my system and cues that I haven’t been noticing. Such as picking up on when inner kids are close to the surface and my ability to be adult is fragmenting – before an actual switch. If I keep pushing and don’t pay attention to those needs – often around feeling vulnerable or bored – child parts naturally try to balance my adults who are all work and no play – then things get really hard. I keep working, I’m still adult and still able to reference an adult perspective but my needs and emotional responses become more and more child like and my capacity is reduced. It’s like revving the engine with the handbrake on, I do make progress but it’s ridiculously slow and frustrating and overall pretty damn hard on the car. Really, this whole mindfulness process is just taking my capacity for self awareness and extending it into all kinds of areas of my self and life I hadn’t thought to before… this is about moving out of that crisis functioning where you have to ignore limits and push right through them, and back into thriving in regular life, where the more sensitive and aware of your own cues, triggers, and needs you are, the more responsive you can be to them before you’ve pushed yourself into burnout, collapse, or internal war. It’s about listening to the small voices. Everything feels different with this sense of being tuned in. I don’t feel that horrible sense of being a machine anymore, with parts as cogs that turn, trapped and dehumanised. It feels like I remember it used to, back before diagnosis and self consciousness; a dance – spontaneous, responsive, beautiful. The system feels organic instead, something that lives and breathes and grows. It’s goddamn beautiful.

In other news, now have a dishwasher. I was super lucky and given one for free by friends of friends who found themselves with a spare. WOW. I have been in two big crunch spaces recently – handing up a semesters worth of assignments at art college, and doing tax, and my house is still reasonably clean and functioning – due entirely to this awesome machine. I can cook and trash the kitchen for dinner, then clean everything into the dishwasher and run it twice a week! No more back pain leaning over the sink, no more constant shame and frustration at the state of my house. I don’t actually have room for a dishwasher in my unit, so I’ve removed my washing machine and put it in the laundry. Going to the laundromat once a week is a nuisance, but far outweighed by the benefits! The energy I’m not using to stress about my dishes is being used to keep up with tidying, sweeping, cleaning the bathroom – or at the moment, mainly tax admin. I’m so happy about this!

Health wise it’s also been a busy week. I’ve seen a lot of specialists lately and that’s likely to continue for a little while yet. I’m coping okay with this! I have a sense of humour, I feel more in control of the process and less overwhelmed by memories of being vulnerable. Which is a massive turn around from the three week triggered spiral I went into after seeing the gastro-enterologist recently. The consensus has been that my sinus surgery IS needed and important and likely to help, and that I’m in good hands with that specialist. That’s a huge relief. Just to underline my awareness of the need, I have another sinus infection and feel like I’ve had a few good punches to the face again. Argh! I’ve had the astonishing rare experience of specialists including each other in their letters/advice, the TMJD dental specialist actually wrote not only to my referring dentist, but also to my GP, sinus specialist, and physiotherapist! I’ve been encouraged to go back to the physio, and use heat, massage, and stretches to manage the facial pain (when there isn’t active infection going on) which is great news for me as surgery or medication options will have large down sides with my liver. Basically I need to try to budget for physio type care in my business plans to keep me as well as possible and manage my pain levels better with all the work I’ve been doing. I also need a different car, preferably with power steering and a good heater/air conditioner. So there’s things to work on that don’t involve hospital/being a patient/being in pain/destroying my liver. Also continuing to look into more options for fun ways to exercise (Rose and I are starting trial classes in martial arts!) going on more walks with Zoe when I’m well enough, and cooking healthier foods.

My new book that teaches how to use In Design has arrived at last – I am going to set aside 1/2 a day a week to study it and learn how to lay out my own books for self publication. This morning I’m up blogging in my dressing gown while Rose catches up on sleep. The garden is beautiful, the animals are lively, I have friends visiting for afternoon tea, and I’m feeling on track and excited about life. It doesn’t get a lot better than this. 🙂 I may consider shifting my blogging schedule now that I’m working so actively on my books, I love and value sharing here but certainly can’t keep up with my daily posts. I may go to weekly, or do little photo-based updates instead of longer posts. I know that mostly it’s the mental health information that is so valuable to people, but it’s challenging to create that in book and blog form at the same time. Maybe I’ll just learn to be more concise. 😉 At any rate, chronic infections and tax notwithstanding, life is pretty awesome over here. I hope you are also feeling good to be alive and connected to yourself. 🙂

Anxiety & Mindfulness

Jun 26, 2014Jun 27, 2014 / Sarah K Reece / Leave a comment

I’m working on this a lot lately, as it has huge implications for my health and business. When I’m highly anxious my eating becomes disordered, and I tend to over work obsessively and only half productively, without giving myself real time off to recharge. This can spiral badly. I’m in a short intensive mentoring course for my business and we’re identifying the key areas that are causing stress and limiting my ability to be productive and efficient and energetic. I’m having a lot of trouble with anxiety as stress comes in from all angles. This morning I was overwhelmed by a to do list of terrifying things and time pressure to get them done in. I woke at 5 and couldn’t get back to sleep but was exhausted and wired and paralysed by anxiety.

After talking things through with a couple of friends and doing some journaling, I finally reached this place:

Right here and right now, everything is okay.
All the fears are just fears
They’ve no more substance than shadows
I don’t have to live my whole week this morning
I just have to be present in this moment, to pay attention to it, to be aware of it, to enjoy what beauty there is in it.
I will eat and rest and do the tasks at before me, and stay in today.
That way, there will be more than just stress
There will also be noticing my lily is blooming, and enjoying my breakfast, and texting with my love, and all the other little unexpected treasures of the day.

Right here and right now, everything is okay.
Stay present.

It helped. I had a good day, I did a lot of work on my tax paperwork without much stress, enrolled in college, and did my business planning. I wrote in my journal:

Anxiety is a thief that steals each day from me, so distracting me with visions of a future on fire that I do not even notice the loss.

Today it took nothing. 🙂

“When sex gets hard’ – Sex & disability forum

Jun 23, 2014Jul 6, 2014 / Sarah K Reece / Leave a comment

Content warning for explicit but not gratuitous discussion about sex.

I was lucky to attend this forum recently, and promised to blog my notes for all those interested parties who couldn’t attend. This is not an exact record of the event, I scribbled notes as quickly as I could but none can be considered true quotes. I have paraphrased and may have misunderstood or mis-attributed in places. This was a forum arranged by the Society of Australian Sexologists. It’s a topic close to my heart but difficult to find training in, so I was really pleased to hear about it at the last minute and be able to squeeze in. It was an excellent, wide ranging conversation and I came home even more enthused about being part of cultural changes and a movement towards more freedom and joy in sex for people who have traditionally been marginalised. The panel was made up of:

Assoc Prof Greg Crawford, a Palliative Care Physician who works with people and sexuality in the context of end of life care
Dr Tabitha Healy, a Medical Oncologist who works with sex in the context of cancer and cancer treatments – she’s become known as the ‘dry vagina doctor’
Assoc Prof Sharon Lawn, a Mental Health Academic who described herself as being married to a lovely man with paranoid schizophrenia
Dr Jane Elliott, a GP who specialises in treating women who are struggling with menopause
Sonia Scharfbillig, a Pelvic Floor Physiotherapist – this is working with the muscles of and around the pelvis to help restore function, elasticity, sensitivity, or ease problems such as chronic pain
Naomi Hutchings, a Sexologist who has worked with SHineSA, and in youth work
Nick Schumi, also a youth worker, and representing the views of those with a lived experience of disability
Kelly Vincent, member for Dignity for Disability, partnered with Nick, and likewise representing lived experience, with additional interests in sex abuse, and sex work

Q: Why don’t doctors talk about sex more?
Greg: Doctors often don’t like to talk about sex. There are cultural issues with many doctors and nurses coming from Asian backgrounds who are very uncomfortable with the topic. There’s a lack of training provided.

Tabitha: Oncologists don’t talk to patients about sex for three main reasons:

I don’t know enough about sex to feel comfortable discussing it
There’s not enough time to bring it up
Isn’t that topic someone else’s problem?

Meetings like this tend to preach to the converted. Training must be compulsory or those who are most vulnerable or anxious will never learn the skills.

Sharon: Mental health clinicians don’t discuss it because they don’t want to open the ‘child sex abuse’ box, because they don’t know what to do once it’s open. Sexuality itself is often pathologised in mental health, especially for young men with psychosis. All their sexual behaviour is interpreted as part of their disorder, and possibly dangerous. Delusions about being pedophiles or rapists are common with such young men, and it’s not hard to trace where the ideas have come from. There are also issues with overmedication when people only have support from mental health teams. Because this often causes sexual dysfunction, then we see non-compliance and often then treatment orders. It’s a big problem.

Kelly: There’s a lot of issues in the disability sector too with people being unwilling to acknowledge that a person with a disability can be sexual or want to have sex… It also helps to ignore cultural ideas about what ‘real sex’ is (ie penetrative sex) to be able to relax and enjoy whatever sexual activities people really want and feel ready for. There are a lot of unhelpful myths about what sex is.

Naomi: There are a lot of issues with doctors not disclosing that mental health medications can kill the libido.

Jane: On the other side of ‘not acknowledging that people want a sex life’ is that if women weren’t ‘distressed by their symptom’ (low libido) they don’t have a problem. Women are sent to me by husbands and whoever to be ‘fixed’. Problems with dry vagina can be resolved by using oestrogen in the vagina. Fixing menopausal symptoms can fix sex issues just by allowing everyone to get more sleep and be less stressed. Testosterone can ‘turn up’ sexual feelings a bit for women where everything else is alright. It won’t overpower depression. Low doses only are safe. High dose patches etc have been taken off the market for good reasons.

Naomi: There can be troubles with partners who have a desire mismatch. Sometimes women come to see me for help because their libido is improving after treatment and they’re excited, but their partner is very unhappy – they were actually content with the low amounts of sex they were previously having.

Sharon: There can be issues with partners wanting people to stop taking their meds so that mania would happen and they would have lots of sex. People can be very vulnerable.

Q. How can we better support people who are having sexual problems due to disability eg. stroke etc. ?

Naomi: Unpacking penis-in-vagina as the only form of sex is helpful but so complex! There are huge cultural issues – emasculation issues – some men feel anxious about not using their penis the way they’re used to. I talk to people about having more ideas and opening up more options. You don’t have to orgasm! Presenting this as an expanding of experiences, not a loss of options. A freely available resource is the Masters and Johnson sensate focus exercises. I start the conversation – what do you think sex is? “If my penis didn’t work today, I’m not a good lover” – well, there’s thighs! And hands, and eyes, and so on. Being sex positive. Exploring what you can do – especially for people with physical disability. Learn what your limitations are. It’s not about what you do, but how it makes you feel. There’s an adjustment process to illness or disability – “This is not the end”. Another suggested resource “Sexuality Reborn” a DVD about disability and spinal injuries and sex, contains suggestions for comfortable positions and so on. Available from the SHineSA resource library.

Kelly: It’s about using bodies in alternative ways. Many women especially are taught that masturbation is masculine and selfish. The reality is that trying to live up to a partner’s expectations while learning about your own body can be exhausting.

Greg: You know the Old Testament story of Onan – who incurred the wrath of God for spilling his seed on the ground? In the hospice, they have a budgie called Onan.

Sharon: Carers, especially those caring for people who have had strokes, or war vets and so on are striving for relationship and dignity with their partner. Systems often focus on the burden of caring, helping you with your tasks. Carers themselves want support with intimacy, connection, maintaining dignity.

Sonia: Working with pain. My role is often about the mechanics – being able to achieve or tolerate penetrative sex. Often women are motivated only by love for their partner, not personal desire. Women are often at their wit’s end and don’t want a bar of sex. Mine is a very clinical approach, stretches, relaxation – taking the sexual side away from it and approaching it like you would any other group of muscles. In my work I differentiate between ‘intercourse’ and ‘outercourse’. I refer to sexologists such as Naomi for the psychological aspects.

Naomi: It helps to de-medicalise issues like vaginismus. The process is often:

Take penetration off the table for now
Work on communication
Rebuild normal patterns of arousal and pleasure
Undo the aversion

It’s important to find time to feel sexual that’s normal and not medical.

Jane: The importance of understanding limerance, that sexual desire changes as relationships develop. A loss of libido can be about unrealistic expectations about desire. Sometimes ‘decision driven sex’ can be a key resource – Rosie King, Where Did My Libido Go?

Kelly: With disability those expectations are often reversed. For example, I was once phoned by the head of the support agency who provided care for me, after sex at 22, in my own home. They were smirking. I told them the phone call wasn’t appropriate. Their response was “We thought you were a good girl”. My agency called the residential care agency who provided support to the man in question (who had an acquired brain injury). They discussed the situation and decided to resolve it by no longer providing transport support for the man to visit me. It was only many years later that I discovered this breach of my confidentiality and collusion by two support agencies to prevent a sexual relationship between consenting adults.

Nick: I was once working in consultation with SHineSA in a supported accommodation situation, providing education about ‘safe sex’. Young men were taught to put condoms on by using broomsticks as an example. One night, two of the young people got together. The workers discovered them in the same bed, with two broomsticks in the room with condoms fitted to them! It’s important to educate in relevant ways so people understand! Just because you do have to educate in different ways, shouldn’t mean people get excluded.

Tabitha: Porn can be a huge issue in that it sets up expectations and distorts the sexual norms. Young men are now often confused by pubic hair on women. There is an expectation of penetrative anal sex. The accessibility of porn and lower age of sexual onset can cause problems. The most effective recommendation I have to support people’s sexual functioning is exercise. It boosts oxytocin and serotonin, the happy hormones. Exercise has been shown to have extraordinary outcomes for cancer, health, mental health, sexual health. It is more effective than antidepressants by far in trails. It’s also good for body image and so on. There’s debate about radical mastectomy vs breast conservation surgeries. All women have different relationships to their breasts and sense of femininity and sexuality. The biggest single factor that impacts on a woman’s health, body image, and happiness post mastectomy is their partner’s response to the surgery. Weight gain associated with chemotherapy and hormone therapy is often more deleterious than mastectomy to body image. It’s important to ask questions, identify problems, and refer to a useful network. None of us can ‘do it all’ or be the one answer.

Sonia: For men with prostate cancer, physio can help hugely with bad pain. Anatomically, men are similar to women with regards to their pelvic floor. Pain can cause a pelvic spasm that perpetuate pain. Relaxation and sometimes dilators can help. Retraining the brain about responses to pain – to prevent the muscle tension. Pelvic Floor Physiotherapists work in private practice and through public hospitals – they are available at Flinders, the RAH, Lyell Mac and so on.

Greg: Men going through prostate cancer often have to deal with a life threatening illness, plus feminisation by the meds, plus loss of libido (due to anti-androgens). Many of the meds cause terribly side effects such as fecal incontinence and so on.

Tabitha: The psychology is important – masculinity, erections, identity, sense of self, and confidence all have a relationship. Men who undertook a structured exercise program had 50% improved erectile function – for much better outcomes this must be started as early as possible post treatment, and also to maintain erections via masturbation. Women going through radiotherapy are often not told that their vagina can seal shut if they do not use it – with dilator etc. There is a real ‘use it or lose it’ aspect to this.

From the audience: As mental health workers we are witnessing sexual exploitation, abuse, risk taking, but we’re not supposed to talk with our clients about it. We’ve been told us talking to them about sex is akin to prostitution. We’re not allowed to discuss safer sex. Clients are not supposed to be having sex.

Sharon: The Mental Health system is obsessed with risk. There are huge issues with risk management marginalising people, othering people, and increasing risks. Many other issues compound for people, such as poverty, grief, abuse, low self esteem.

Kelly: Often the problem (refusing to discuss sex, othering the client) doesn’t come from the workers, it comes from the bosses.

Q: How to support people dealing with chronic illnesses, where low energy levels impact on libido?
Tabitha: Fibromyalgia is common in cancer. Reconditioning program – twice a week in a gym with a personal trainer for 6 weeks – the difference is extraordinary. We talk about “A new self in chronic illness” – it’s key to reset expectations. Being chronically stuck in a world where you’re trying to be who you used to be is horrific, people become distraught and self destructive. Guided programs are key! People are too sick and overwhelmed to do this on their own.

Sharon: Start early! Exercise after de conditioning and weight gain is much harder for people.

Kelly: Exhaustion and muscle fatigue are limiting. Nick and I have found working activities that help with energy and muscles into the sexual wind up process eg stretches, massages, some forms of exercise – become part of sex. We take a very physiotherapy approach to the nits and bolts of muscles and energy. There are many resources available on the net and youtube! For example, if you need resources about having sex for a client in a wheelchair, google wheelchair sex positions, you will get a lot of information. This kind of sharing of lived experience is very valuable for people.

Q. Kelly, where do things stand with the decriminalisation of sex work in South Australia?
Kelly: Stef Key from the Labor Party was recently involved in drafting bills to protect rights. It didn’t pass. For more information about sex work and disability, there’s an organisation in NSW called Touching Base. Touching base was started by Rachel Waters to teach sex workers how to engage with clients with a disability. SIN (Sex Industry Network) also do good work in this area. People with disabilities may seek out sex workers for different reasons – and some absolutely do not want it, or it would have detrimental effects on self esteem and so on. It’s a complex story with many different aspects. Choice is important. There is some danger in looking at sex work only through a disability perspective.

Someone mentions that clinic 257 (the STD clinic at the RAH) codes sex work as a community service. Kelly argues against this, using the example of sheltered workshops being moved out of industrial relations and into the community services bracket – that this creates a damaging view of disability.

The wrap up – that it’s helpful to build a vocabulary to have these conversations. Redefining our ideas about ‘normal sex’ is also crucial. And that our obsession with normality makes us slaves to our cultures.

This was an exciting forum, very encouraging in light of the work I’ve been doing regarding Emotionally Safer Sex. I’ve also recently completed some work with SHineSA, supporting the development of training about sexual health specifically for mental health work. I’m looking forward to seeing the first round of training offered later this year and hope that this goes some way towards busting stigma and starting good conversations for people. I’ve also decided to share my own experience of sexual health counselling. There is much yet to be done!

PTSD friendly bedroom

Jun 2, 2014 / Sarah K Reece / Leave a comment

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

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

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

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

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

What is a man?

May 24, 2014Dec 23, 2016 / Sarah K Reece / 4 Comments

Happiness is trying on men’s clothes at a second hand shop with your queer girlfriend.

At least, that was yesterday’s definition over in my world.

Some multiples have parts who have a different sense of gender. I’ve touched on this before in About Transgender. This can be a challenge. We have one who doesn’t identify as male or female, but who doesn’t come out very much. We also have a couple of guys in a female – dominated system, and a female body. We’ve struggled with this. The neat and simple thing to do is to accept and welcome and move on with life. Some multiples manage this really well. We, for various reasons, haven’t. It’s not neat or simple or easy at all for us. Gender is a loaded concept for us, with lots of baggage. So we’ve suppressed and hoped we didn’t have to engage. Why have male parts? Why are they here? Why continue to be here? Can’t they let go of their sense of male identity? What is a male identity anyway? Why do they feel so different from our ‘tomboy’ parts, those who tend to reject the feminine while still feeling female. How do we create a safe space for them when most people don’t cope with parts on any level?

When we first started to make sense of the mutliplicity itself, we were so suspicious about it all. Like a lawyer, we attacked every aspect of it – how do I know I’m multiple? Have we invented it to please the shrink? Is it iatrogenic? Do we just want to be ‘special’? What if we’re mistaken? I find the same suspicion about the trans parts. Do you have to be this bloody complicated? Can’t you just all identify as female? Do you have to have recognition externally, isn’t it fine if people just think you’re butch? Aren’t you just trying to alienate yourself/piss off your father/prove something? Wouldn’t you have to let go of your sense of identity to integrate anyway? You’re holding us back. You’re making us vulnerable. Go away.

You’re not a real guy.

You’re not a real trans either.

There can be a powerful sense of being an imposter when you’re a trans part. I don’t belong to the trans community because I’m only a part. And most of my system is female and out a lot more than I am. We’re never going to transition. But what makes a guy, anyway? It can’t just be about bits. It can’t be about a bit of flesh in my hand, or being able to pee standing. It can’t just be hating my breasts and thinking I’m ugly and weak. It can’t be rejecting the feminine, I like poetry and reading and have a system full of women and girls I think of as my sisters. I’m not into misogyny or rejection. But I know being called a woman makes me angry enough to spit. I know that the thought of my girlfriend recoiling from me in fear or disgust makes me want to die. I know that I want to be a better man than my father. I know that the cultural ideas of masculinity seem like grotesque parodies of the tenderness and strength and complexity I admire in good men.

I now know that having Rose take me shopping to buy guy clothes, to laugh at the shop assistant who looked at us in disgust, to go home with a bag of trousers that are too long in the leg and tshirts with collars on them and guy shoes makes up for the glitter nail polish on our hands and the nose piercing and the way we are always identified as lesbians when we hold hands in public.

What makes one belief acceptable and another one psychotic? If I thought I was a rabbit or an astronaut instead of a guy, what then?

I’ll never forget watching a movie, many years ago. The main characters kiss. We switch back and forth, one moment the woman feeling his stubble graze her skin, another the man, tasting lipstick and the sweet drink on her breath. Co-consciousness can be mind bending at times.

I think of Jung’s ideas of anima and animus, the male and female aspect in all of us. I think of an old boyfriend, when I was young, pointing to the ground – here is male, and across from it is female. Then in a diagonal cross – and here I am, and here you are. Both and neither. Different but connected by our inability to relate entirely to one or the other. I remember borrowing his clothes to wear some days/

With suppression comes shame and loneliness. There’s been a kind of hope that without a place in the world, we would quietly unravel, unknit back to yarn, the raw stuff of self. Let go of shape and identity. It hasn’t worked. I can’t answer the question ‘Why am I here?’, but maybe I hold the key to some of the self hate. ‘What would you tell someone else in your situation?’ Rose asks me. Your approach isn’t working for you, try something else.

It is what it is. There’s glitter on my nails. Rose holds my hand, unthreatened, unafraid. The words and labels are only ways to describe and explain things that are far deeper than words. She pays for a bag of clothes for us, makes a space in the world for us, tries to use the right pronouns. I’m part of a whole, and most of that is female. I refuse to be afraid of that.

For more information see articles listed on Trans and Genderqueer Links, or scroll through posts in the category of sex, sexuality, and gender.

What to do with a suicidal part

May 20, 2014Jul 13, 2016 / Sarah K Reece / 2 Comments

I am so damn tired. It’s been a rough week with a lot of stress in my head and the lives of a few of my close friends. On the upside, I have a lot more material for the part of my book that’s about managing overwhelming emotional pain… sigh. Silver linings!

One of my big stresses recently was a part becoming suicidal. This can be a huge issue for multiples! I get a lot of emails and contact from people who are struggling with one or more parts who are in absolute meltdown. Whole systems can fall apart under the stress, and processes which were fair or reasonable can become abusive and totalitarian.

Most people who have felt acutely suicidal have experienced that disjointed place of desperately wanting to die and being terrified of your own feelings and actions at the same time. It’s a profound conflict, an inner struggle that consumes all resources and leaves people utterly drained and deeply afraid of themselves. For multiples the struggle and the conflict can be more polarised and even more intense. Parts who don’t feel suicidal are often terrified of being killed – as far as they are concerned, not by suicide but murdered. Fear does not make us kind. We recoil, disconnect, and attack when we feel like our lives are being threatened. Systems can rapidly devolve into massive power struggles, and outright war with other parts trying to permanently suppress or annihilate suicidal parts. Child parts especially may become so terrorised that they dehumanise a suicidal part and see them as a witch, demon, monster, or other evil creature. Being trapped in a body/mind with a suicidal part can be very traumatic. Experiences of fear, horror, and helplessness may contribute to the development of severe trauma responses in other parts, including PTSD. As a suicidal part becomes increasingly attacked, dehumanised, and alienated from the rest of their system their despair usually intensifies, their behaviour becomes more dangerous, and the restraining factors of empathy, connection, and a sense of responsibility to the rest of their system are eroded. Sometimes this ends in catastrophe. The loss of anyone to suicide is utterly devastating. Having spoken with frightened, non suicidal children and other parts in the hours or days prior is almost unfathomable.

Versions of this dynamic tend to repeat themselves with parts who self-harm, have addictions, re-contact abusers, suffer eating disorders, or have other frightening and self destructive behaviours, with varying levels of intensity. There is no one magic fix for this situation, and different multiples manage it in many different ways. I can share some thoughts and ideas that I’ve found useful and you can possibly use them as a spring board to trial your own approaches.

My first observation is simple but important. When we are frightened, we will try to control. When we are frightened of someone, or some part, we will probably want to reject, dehumanise, and alienate them. It’s okay to have these impulses, they are human! It’s okay to feel everything this horribly stressful situation makes you feel – scared, frustrated, confused, angry, overwhelmed, defeated, hurt, exhausted, burdened… It’s a really hard place to be in. Some of your feelings are going to want to make you act in ways that will feel right but make the situation worse. You have every right to feel everything you’re feeling, but you need to be careful before acting on impulse.

Exactly the same goes for the suicidal part/s. You probably can’t make them stop feeling the way they do and rejecting their feelings and pain will probably intensify them. They have every right to be feeling the way they are, it’s their impulse to act on them that is the issue. I have one part who has a strong desire to self harm, and at least two who are very vulnerable to feeling suicidal. So how come I’m still here (touch wood)? My observation has been that parts who are at greatest risk of killing themselves are parts who:

misunderstand the nature of multiplicity and think they can kill the body without the rest of the system dying. This is pretty common and important to check with any suicidal part!
are disconnected from or rejected by their own systems and don’t feel empathy towards the other parts
are being abused by their own systems
are being abused by other people in their lives
are angry and resentful towards their own systems and deliberately seeking to frighten or punish
do not feel loved
do not feel hope, and feel responsible for finding a sense of hope for the whole system
have horrific roles within the system – for example, the part who remembers all the bad things, the part who feels all the shame, the part who acts out all the stress for the system, and so on
do not get their needs met
do not feel safe
feel overwhelmed by guilt or shame, believe they are evil, believe their death will protect someone or make the world a better or safer place

Obviously there are other risk factors too. Some of the protective factors I’ve found support suicidal parts are:

having a safe place or person to express their intense feelings without censoring or judgement by their systems – other parts often feel shame about these feelings and may refuse to allow a suicidal part to speak to a therapist, write honestly in a journal, and so on.
feel a sense of connection and love from their systems. They work together as a team to manage the feelings and impulses. Their system expresses empathy for their situation, and they can feel empathy for the situation their feeling puts other parts in
understand that suicide will kill everyone in their system
are able to allow other parts or people to find or create hope in their lives, accept support from others
are able to negotiate some role changes when needed
are given respite from demands of life. eg. when out, these parts are allowed to stay in bed, email the therapist, not leave the house etc, or they are willingly switched back inside if functioning is needed that day
are willing to compromise on ‘needs’ – so eg if the intense experience is a ‘need’ to cut, they work with their system to find alternatives that sate that need somewhat, such as Ink not Blood.
are treated with respect and gratitude for their role
are treated as though they are important, valuable, significant members of the system

As you can hear, a lot of this is about relationship. This kind of connection takes more than an afternoon to build, and for a system under such extreme stress it’s a hell of an ask. On the other hand, it could save your life. In my experience there’s usually one member at least who is able to connect and empathise better with a suicidal part, and it can become their role in the early stages to intervene on behalf of a suicidal part and the rest of the system (assuming a system of more than two parts). Part of the basis for this can be realising that there is a lot more common ground to your situation than it seems at first. Suicidal and non-suicidal parts are both often feeling trapped, stressed, scared, overwhelmed, and unhappy. If you keep seeing the problem as being the suicidal part, all your reactions and solutions will be about controlling or eliminating them. If you can see the problem as the experience of being suicidal, you can approach the part with more empathy and team up with them to help manage that experience. Here are a few approaches that people sometimes find helpful:

directly influencing a part’s feelings, memories, or autonomy. Some systems or parts can do this, some can’t. Sometimes you can directly engage to dial down intense emotions, shift who is ‘keeping’ bad memories – perhaps spread the load a little more evenly, or keep a part inside in lockdown while they are a danger.
engaging suicide on a symbolic level such as allowing a part to ‘exit’ from life, refuse to come out, disengage from relationships, change their name and so on
killing or supporting the part to die without affecting the body. Some systems can do this, some cannot. There are complex ethical concerns here that suggest this as an option of last resort.
containing the part except for safe locations – eg. hospital, in therapy, in a ‘safe’ place where they can express feelings (safe is dependant on their likely methods of suicide – it may be an empty beach if drowning does not appeal, or a craft room if scissors are not a concern, etc)
increasing the part’s dissociation so they are buffered from their intense feelings and less likely to act on them. eg. sometimes if a suicidal part is close to the surface whoever is out in my system will trigger dissociation by surfing the net, watching tv, sitting in the bath, anything that makes us ‘zone out’ until we feel safer
comforting the part internally by doing things such as hugging them, talking to them gently, singing to them, making a safe nurturing space for them internally (not all multiples have internal worlds, and not all multiples can communicate internally)
take on the parts’ unmet needs as problems the whole system needs to engage and manage. eg. if they need better social support the whole system works on building stronger supportive friendships or finding a good support group online, or if they need a musical outlet the system works together to save money for an instrument and lessons. Take the burden of solving problems, finding hope, and meeting needs away from the part who isn’t coping.
explain the part in non-frightening ways to scared system members such as children. Humanise them and help to develop empathy towards them. Sometimes kids will have the most profound and effective connections with deeply wounded parts.
make the most of the multiple experience of never really being alone. Support and be with each other.
stagger behaviour in order from least to most harm done. If an extremely bad night is going to be survived only with self harm then better that then death. I write more about this kind of approach in ‘Feeling Chronically Suicidal‘.
merge or fuse a suicidal part with a hopeful or naively optomistic part to create a more balanced single part from them both
try taking a caring, invested, parental approach to a suicidal part. Coax, coach, nurture, and set limits with them
understanding and affirming that no systems are invulnerable without also being psychopathic. Part of what it means to be human is our capacity to feel shame, suffering, and hopelessness. We also have the capacity to heal. Most people who survive a suicide attempt later feel far better and are relieved they did not die. I’ve no reason to think that parts are fundamentally different. Keep these things in mind if killing or otherwise removing a suicidal part is your intention, there may be unintended consequences assuming you are successful.

In some ways, what helps suicidal parts is pretty much what helps anyone. Other approaches are more specific to being multiple. Some of these ideas may seem increibly far away or even impossible for you, especially if your system is at war. Please be assured that even small steps make huge differences. Little gestures of compassion or connection can start turning everything around. Only you and your system can find what works best for you, and only you can decide your own take on the values and ethics with which you will engage these very challenging situations. Please be assured that you are certainly not alone in these struggles, and that it possible to live with suicidal part/s. Wishing you all the very best.

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

Soul

May 13, 2014 / Sarah K Reece / 4 Comments

Yesterday was an extraordinary day. The pain has eased, not that in my body, but the soul pain that was driving me insane. I can breathe again, the phrase was like heart beating in my mind, over and over. Monday is art college day. We always learn something, no matter how sick or exhausted or in pain, no matter the occasional tutor who drives me up the wall, or the frustration of ‘concept development’ invading every class I have loved. Today I painted with oil washes for the first time, creating a likeness of a small creature I first crafted from newspaper:

I’ve never worked with oils, inks, and charcoal in the same painting before. I like him.

In photography class I talked with my painting tutor about our project topic – identity. I had been exploring pain, disability, illness, public and private selves. We talked openly about being multiple but that we did not want to explore that in a crass way for the project. The reductionism of the assumptions about identity grated, people were making their sense of self down to lists of attributes, to collections of likes and dislikes. I am not these things, I argued. The tutor said self is a synthesis of these things. I said no. If you ask me to photograph my self, I want to photograph my soul.

We switched, away from madness and suffering and despair, away from the futile rage. Tonight Rose and I ate dinner on the beach, watching the planes fly in over the water. My heart cane back, my dark heart, my poet, my one who eats pain and is not driven mad. All the world shifted and there was no despair any longer, no anguish. The night sang, sweet and wild and beautiful. I thought about so many people being driven mad by pain, trying to learn how to eat it. I thought about how the life that distracts me, the pain that prevents me from making art is not a distraction but is the subject of art, something I understand intimately. That things of which I’m ashamed, like my need for wrist poems, are places where art keeps me alive, where art gives me unscarred skin. And here, on this blog, it’s where I tear down my public image, over and over, before it crushes me. Where I search constantly for the truth of my own story, for my humanity.

Tonight the shackles fell away, and I was alive, and free as anyone can be. It won’t last, but then, what does? I don’t need it to. It is enough to drink the night and hear the ocean and breathe the stars and smell the skin of my lover, her hair like jasmine and her mouth like roses. Everything can be broken and wrong and heart full of grief and body of pain and still there is this place in the night, beyond fear, where something within you can fly if you remember how. I hope you know it too.

Pain

May 4, 2014 / Sarah K Reece / Leave a comment

I’m home again from my weekend away at the Medieval Fair, curled up in bed, listening to the saddest music I can find, and dreading a full day of college tomorrow.

I’m glad I went, it was wonderful and I enjoyed myself. A bunch of people were very kind to me to make it possible, driving me around, petsitting and all sorts. I bought some lovely things, had great food, spent a lot of time sitting around fires and hanging out with good people. But my fibro was very bad, pain levels very high. At the end of the weekend my head is a mess, partly because I’ve been trying to keep it together until I get home. I’m okay but also on the edge of serious trouble. Parts range from placid acceptance and wanting to tidy the kitchen to extreme distress. There’s a lot of head noise and huge self loathing. We’re fragile about the fibro flare and the changes in business plans, a sense of desperation, failure, and hopelessness dog us. Fear that maybe it’s all over, that dream of income and business success, self sufficiency. Not enough sleep, too many triggers and reminders of my past, too much trying to be strong, too many emotional shocks and bad news.

Under the place where I’m fine, there’s a sense of building panic, someone screaming out for help. It’s been a hard week. A few more dreams curl up and die, and we can’t figure out who to hate. The more gracious we are to others, the more we drive the knives into ourselves. We also bite easily, like a frightened dog, and hate ourselves for that too. Terror and rage. I have to keep reminding myself we have value, we don’t have to let anyone in we don’t want to, we’re allowed to reject, refuse, shut down, retreat. Tonight, in bed, with Radiohead weeping on my mp3 player, it’s good to be alone. Someone in me screams and someone cries and someone sharpens their claws, and the sense of being different, of being inadequate, of being misunderstood, eases just a little. I can be a savage shape here and no one gets hurt. I can despair and no one drowns but me. I can hate myself without new fuel for that feeling as self loathing warps my perceptions and behaviour with others in ways I also hate. Arrest the spiral. Just be, even if I’m resting in a place of profound distress. Just be what I am and nothing else.

I breathe in failure and exhale despair. My joints cry out in pain of wasted effort. Someone sobs and someone soothes and someone cries ‘I hate myself’ over and over again like it’s a spell to keep away the bogeyman.

Outside, the night is still and cool and speaks to me of freedom from suffering and grief. There’s a song in it that calls my spirit and the yearning is painful but it also calls me back into my body. So I lie here, without blood, without screaming. I just breathe, and hurt. I breathe in the shadows and breathe out the pain and my bones weep and my mind is a city crying out in a great darkness but even that is a song if you know how to listen for it.

Pain is good, black earth to grow new dreams in.

It’s my birthday!

Apr 19, 2014 / Sarah K Reece / 7 Comments

I often struggle around my birthday, but fortunately Rose is very good at celebrations so I’m getting spoiled. We usually get badly depressed this time of year, but with some extra loving and being the other side of 30, it hasn’t been intense this year. Plus my life has gone through so many changes over the past month that my head is still spinning, a birthday hasn’t really had a look in. I’ve finished my working week, which was painting at the Zoo again, good work but painful. Last night was dinner and cards and chocolates with friends, a good laugh as always and just what I needed after a hard week.

Today is presents and breakfast in bed, a trip to the plaster fun house for my kidlets, and a campfire with friends around tonight. There will be baked potatoes and chocolate pudding and hot spiced mead and bunting in the trees. We’re a bit excited! We might be going out dancing at the local goth club tonight too. One or two of us who just freak out have had some time to write in the middle of the night and hide out. Birthdays can be complex when you’re multiple!

Tomorrow Rose is whisking us away on a surprise holiday to I don’t know where. I love trips and I love surprises so this is pretty special. People are looking after my animals while we’re gone. I used to be so lonely and miserable on my birthdays, a hang over from years without friends. Now my world is taking good care of me, and I’m very lucky.

Free Event Tonight – Join us to Celebrate Regeneration

Apr 15, 2014Apr 15, 2014 / Sarah K Reece / Leave a comment

We’re having a celebration tonight and it would be wonderful if you could join us! Regeneration is a short film about community and recovery I was involved in making, and we were really excited to hear that it won an award in a Canadian Film Festival and went on tour over there! Obviously we couldn’t turn up in person so we thought we’d host a little screening and celebration here. It’s free to come along, it won’t take up much of your evening (the screening of the film plus some other little performances or treats by each of the artists involved) and we’re providing nibbles.

5 – 6pm
Today, 15 April
The Box Factory
59 Regent St Adelaide

Here’s a Map

If you’re on Facebook, here’s a link to the event.

If you’d like an invitation to print out, here it is.

“Bare feet on grass was the foundation for this beautiful silent film about recovering from mental illness. Written, filmed, and performed by people with lived experience – Helen Keene, Steve Clark, Suzanne Reece, and Sarah K Reece, with support from filmmaker Victoria Cox. Despite having no previous experience with the medium of film, we have been honoured by Regeneration being selected as the winning film for a drama under 10 minutes by Picture This Film Festival and toured around Canada. Come and celebrate with us, meet the artists, and get an insight into our passions and wider body of work.”

RSVP to mindshare@mhcsa.org.au
Enquiries to (08) 8394 2559

Dark art – milk and opals

Apr 4, 2014 / Sarah K Reece / Leave a comment

Recovery & contradictions

Mar 28, 2014 / Sarah K Reece / 7 Comments

I’ve found something I love now that this blog is nearly three years old. I’ve written enough to be able to take some of my earlier articles and write the shadow article, the contradictions. For me, a huge aspect of being multiple is that there is so often more than one reaction or opinion going on. I have to clarify my thoughts to be able to share them, here or in my work or relationships. Often this process over simplifies, it strips back complex concepts to a simple one. There’s huge value in this, especially for people who are in crisis or new to a field of information. They need somewhere to start, something that can be easily grasped hold of. But it gives me such a shiver of delight to be able to go back and contradict myself, to write in the shadows cast by all these ideas. Grounding techniques can be the most amazing tools for managing chronic dissociation and trauma issues. They can also be completely and utterly the wrong approach at times. Sometimes you do not need to be more grounded, more adult, more sane, more sensible and responsible, more a creature of the day. Sometimes the screaming and the madness are because the night is calling you and your spirit needs to fly. Sometimes it is not that you are too dissociated, but that you are not dissociated enough. Sometimes you need less safety and more adventure.

In the talk about recovery I give at Tafe, I usually point to a number of contradictions in my story, precisely because they are so commonly overlooked and reduced to a single, simpler story. I mention several in particular –

My childhood was terrible/my childhood was wonderful
Dissociation takes away from my life/dissociation protects my life
I am vulnerable/I am resilient
I need help/I can offer help to others

Each of these things is true, I say. And yet so often one obliterates the other. One story hides the other in its shadow. They are posited as ‘either/or’ facts when they are ‘and’. My childhood was both terrible and wonderful. So often when we talk about recovery, we hear a story arc that goes – Things got hard, I got sick, I found help, I recovered. Recovery is an endpoint where madness is no longer welcome. We do not talk any more about agony. There is a bizarre idea – totally at odds with my experience of life – that mentally healthy people do not suffer pain. Wildness is gone. The contradictions are all neatly ironed out, no more wrestling with doubt. Everything makes sense and all the loose ends are tied.

The human experience is so complex and strange. I like the contradictions and I’m suspicious of stories that don’t have any. Within contradictions I find an honest reflection of life; of the magnificent beauty, the breath taking, heart rending love, the horror, anguish, and misery of what it is to be alive. To love vulnerable and flawed people, to have dreams and watch some of them die, to struggle and succeed and fail and find that life is complex and unexpected. This is what it is to be human. Recovery as an idea, if it is to have any worth, must embrace that complexity rather than shrink from it. It cannot be a whitewashed place of pretending that we no longer bleed when pricked. That is a trap in which peer workers, those who’s very jobs depend on their capacity to prove they have ‘recovered’, will starve.

So, we have the idea, and the shadow of the idea. To be able to pick it up, turn it over, look beneath it, scrape the soil from the underside and smell the cold night scent of it, this is what I love. I built theories and frameworks and ideas and I love to do this. It helps me, like navigating the night by the pattern of the stars. I love to take masses of complex, unrelated information, break them down, and put them next to each other to see what happens. I love building ideas. And I love knocking them over, not treating them as sacred, not being scared of the truths in the shadows. I believe with my whole heart in the work that I do, and I love it down to my bones. But it’s not a house of cards that a contrary wind can blow over. They are stones in the palm of my hand. They are boulders on which I can stand. They reveal a truth, and they conceal another truth. I make them and I love them and I love the shadow beneath them. Life is not meant to be a neat, comforting story. In the contradictions are the depth and beauty. People are not meant to be so recovered that they walk without touching the ground, with no shadow, no dark uncertainty, no hint of wild abandon. We should not abandon complexity and uncertainty to territory marked ‘sickness’, ‘madness’ or ‘here be dragons’. Contradictions are also part of health, freedom, and love, an essential part of what it is to be human and to be alive.

How to rebuild

Mar 27, 2014 / Sarah K Reece / 2 Comments

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

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

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

The fear of dying

Mar 26, 2014Mar 26, 2014 / Sarah K Reece / Leave a comment

Today was a triumphant day. Rose and I saw our first dreadlocks client in our new studio, and spent 5 & 1/2 hours getting them looking great again and putting in about 50 extensions. We’re both trashed but on a wonderful high.

Last night I dreamed that my friend Leanne, who died recently, was still alive. In my dream our long drive interstate for her funeral was actually to see her, in response to a plea for help. When we arrived she told us that she was terminally ill and wanted assistance to kill herself. In the dream I was outwardly calm as we took her to the doctor for assessment (euthanasia was legal in my dream) while inside I was screaming with a kind of terrified despair – please please don’t make me do this to you! A desperate clash between wanting to honour her needs and wanting to care for my own.

I woke distressed and confused, it took a little time to untangle dream from reality, it had been extremely vivid. It’s easy in some ways to turn my face from the grief and the reality of her death, to let it slip past my mind. That’s why I have a photo of her coffin in my phone, a piece of stone from the graveyard where she was laid to rest. Not to wound and torture myself, but to inoculate me against dissociation of the kind that takes away life. So I get out of bed and I do the things that make up my day, and I always try to do them wholeheartedly. Then in quiet moments I remember my bright, lovely friend, and I realise her passing, that though she remains in my heart her voice is now silent and we cannot have any new conversations except in the constructs of my mind.

It makes me miss her and it makes me fear dying young. I have so much love ahead of me, so many dreams and hopes and so much love. Years of torment and loneliness have passed, made way for hard won insight, for love and friendship, for some kind of peace, for joy and hope. It makes me feel the farthest from suicidal I think I’ve ever been, to clutch to life with desperate desire to live longer and dream deeper. When the guilt and the self loathing crank into life like a carousel spinning in my mind I think to myself – I don’t have time for this. I don’t have time to waste on self hate, there is so much life to be loved, friends to love, so many dreams I’m hoping for. And it doesn’t feel dismissive, it feels like permission to stop torturing myself because I never get that time back. I feel a deep laugh, a joyful casting off of a heavy weight. I put it down and throw myself back into my strange, beautiful, tiring, complicated life, with joyful abandon. I am deeply blessed.

About Growing Up

Mar 3, 2014Mar 2, 2014 / Sarah K Reece / 8 Comments

I’ve been thinking a lot about this lately. Some people with multiplicity point to key experiences such as wishing whatever was happening, was happening to someone else. I’ve never been able to relate to that. But the idea of not wanting to grow up? Oh yes. And what better way to achieve that then splitting off child parts and forming more parts when circumstances required new skills?

There was not a single adult in my world I envied. No one whose life I wanted to have. What I saw around me was a lot of pain and loneliness. Often they didn’t even seen to be aware how unhappy they were, but for me it was painfully visible. I could smell it on the air, feel it in my chest. An empathic child, I felt the cast off emotions and denied anguish of everyone around me. I felt stuck, in a body growing older, when there was nowhere I wanted to grow to. Perceptiveness can be lethal. I saw, and understood, far more than I could emotionally process. I was constantly caught between the dark and the light, between the way everything seemed to be on the surface, and the underworld. A good loving family, and the constant threat of violence. An upright private school, and the casualty list of victims too underprivileged to be worth protecting from the bullies.

Adults close to me had their own issues with the adult world. One told me that the process of growing up kills your spirit. Adults don’t play anymore, don’t climb trees on the way to work. They’re numb. I promised myself I wouldn’t turn into an adult. Another told me how children are innocent but adults lose this. In Sunday School we were told stories about children who could ask the challenging questions of hurt and angry adults, and be heard, where another adult would have been shut out. Many used me as a secret keeper. I heard horror stories that many had shared with no other person. I became tasked with this impossible goal, of not growing up, by adults who were mourning their own lost inner children. I tried very hard to comply. I kept the secrets of my peers also, even those who bullied me. I was steeped in the knowledge of unspoken pain.

“Adults are the corpses of children.”

Oddly enough, I was expected to function at an adult level at a very young age. For an oldest child in a family under massive stress, this isn’t an unusual story. Not all of that was a bad thing. But some of it hurt. Some of it was lying in the dark at night, afraid of the shadows, because I was now too big a kid to have a light on. Some of it was lonely and overwhelming, heavy burdens of expectations and responsibly.

I grew up surrounded by the myth of the Golden Age of Childhood. Constantly being told these were the best years of your life. I swore to myself never to rewrite my history and pretend this had been the case for me. I lived in this surreal world where everyone was locked away with their private pain, where everyone pretended there was no war and no dead bodies. It was like being able to see blood all over the walls and no one else acknowledging it was there.

A boy stalked me when I was 14. He was profoundly distressed, suicidal, and self harming. When I sought help for him from the head of our school department, I encountered endemic denial. The boy had started coming to school with extensive fresh injuries on his arms from cutting. I begged the head teacher to intervene. He asked the boy how he received the injuries. He reported back to me that they were ‘from falling into a rose bush’. I cried and said you know that’s not true! The teacher said well there’s nothing else we can do, with the relief of an adult out of their depth who has been allowed to keep running with the easier cover story. You could scream for help very, very loudly in my world without anyone hearing.

My peers were not the same. They yearned for adulthood. They craved power, freedom, and sex. Impatient with childhood, they raced towards an adult world that contained everything they desired and were denied. This difference became a rapidly widening gulf between us, bigger every year.

My sexual development was screwed up by weird attitudes, secrets, teachings, and abuse. I feared my own desires. I feared power and corruption. I had no illusions about the freedoms of adulthood. The only freedom I craved and lived for was to leave school. Responsibility and failure weighed heavily upon me.

I’m 30 now, undeniably an adult, at least physically. I have child parts, and sometimes I think they are the best of us. We have on some levels, admirably succeeded in our attempts to not grow up. It has been a painful mess. Sometimes I think that child in an adult body is one of the loneliest creatures in existence. My little 5 year old would sometimes just switch out and sit alone on the couch, waiting. She was hungry and wanted ice cream, but kids aren’t allowed to open the freezer so she would just wait for a grown up to come and help her. I live alone, no one was coming. I feel them yearning in me when we pass children at the park. When I read about a multiple giving a box of crayons as a gift to another newly diagnosed, a great desire leaped in my heart. It was another year before I was brave enough to buy crayons for us.

So here I am, painfully suspended between the worlds of child and adult. There’s so many ideas to untangle. That adults live in the ‘real world’. I’ve spent a lot of time trying to fit myself to that real world – the world of admin and responsibility and success and bills that need paying. I also keep rebelling against my own goals, switching in the rain, running away from my own life. I’m starting to develop new ideas. I’m starting to think that perhaps the task of all adults – multiples and otherwise – is to love and look after their own inner children. I’m starting to think that there is no ‘real world’, that the real world is just as much a dream as any other. When I live in a caravan, what am I ‘really’? White trash or a gypsy dreamer? Adults get together and dream up their version of what reality is, of what love is, and what success is. I think my idea of the real world is a nightmare. A bad dream, dreamed by a lot of hurting adults with very lost and lonely inner children. It’s not even about success, when I look at some of the ‘successful’ people I admire – like Amanda Palmer – she doesn’t live in the real world! Oh, she does admin and pays her bills, but only as a means to ends, not as a goal in themselves. They are the poles that keep up the tent in which the magic happens. The magic is the real world, the creating and adventuring and connecting and being uniquely oneself.

I’m starting to dream new dreams of adulthood that don’t scare me so much. Some days I have the most glorious glimpse of life as a mother who is very imperfect, who is sick and strange and full of dark art. And I see her painting the kids to be dinosaurs and chasing them round the yard. There’s joy and freedom and silliness. There’s a different world, that has nothing to do with the real, nothing to do with adults who are dead on the inside.

Rose and I have both been so sick this week, and yet, when I let go of the idea of what we should be doing and how I expect this to play out, something magic happens. The day becomes infinity. I’m captured by the fall of the light through the curtains, by the colour of the skirts of leaves, by the warmth of her skin, the feel of ice water in my mouth, watching the kitten chew the dog’s foot and laying back to laugh. What was a wasted day, a sick day, a day in which nothing good would happen, a day to be endured as I wait to get back to the real world, becomes the most beautiful day of my week. I read lovely books and slip in and out pain and sleep and let go of the driving and the haunting sense of failure and I am given back the most beautiful day.