PTSD friendly bedroom

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

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

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

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

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

Gary Numan in Adelaide

I had a pretty incredible week. Since grasping that massive anxiety is making it very hard to work on my business re launch, I’ve been able to be very efficient and get a lot done. I’ve also had some great nights out with friends. Thursday evening, for my birthday I was given a ticket to the Gary Numan concert. I had a blast! What a fantastic night! It was such a pleasure to see people who felt so at home on the stage, utterly enjoying performing. It really reminded me how much I miss out, it’s been many years since I was involved with theatre and productions. I so enjoyed doing a body painting and poetry reading performance recently, I’m considering finding a place where I can do something like that regularly.

Local band Izera opened on the night and they were great.
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I was at the front of the stage and able to photograph Numan and bass guitarist Tim Slade through the smoke and lights. The song line up was excellent, although I did wish that one or two favourites might have been played. Watching Numan song The Unborn live – a song about the loss of his baby girl, made me weep. I find it amazing that he can open up those feelings and then let them go again for a concert. Beautiful.

Our new work routines are finally starting to settle in and I’m really enjoying not working through my evenings and weekends! It’s been wonderful to socialise and see art and hang out with great friends, and I’m feeling excited and rejuvenated. Happy happy.

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Neurotic Eagles

I’m up! Didn’t get a sleep in the way I was hoping to this morning, I’m very short of sleep lately. But I got a rest! Pain levels are bad, but my mood is great – and if I got a choice, that’s usually the way around I’d choose to have it. 😉 Life has been busy lately. I feel like I’m skating on ice, it’s all going a bit fast and too much, but I haven’t crashed into any trees or fallen through any holes so yay for me. I’m on track with my college work, good business plans are in place, I’m getting some housework done, I have cupboards full of food because Rose got paid finally and bought a car full of food to say thankyou for all the support through unemployment, and I had a great conversation last night that’s kicked off a really good mood.

Business stuff is undergoing big changes. I’ve done my last gig this weekend where I travel a long distance, for no hourly rate, for a fundraiser. Rose is working full time now, and I’ve dramatically noticed the loss of this caring and diligent person who encourages me, lets me soundboard ideas, drives me when I’m too tired to make it back from a gig, cleans brushes, and all the other thousand ways she’s supported my work. I’m now supporting her work, trying to help come up with good routines for meals and exercise and downtime. This week we prepared lunches on Sunday and took wonderful salad-in-a-jar, fruit, and homemade brownies to work. 🙂 Mmmm! I’m also still healing up from a bad bout of tendinitis in my right wrist, which has meant having to turn down a lot of work over the past few weeks. I have learned how to make beautiful dreads but can’t do too many in a week without trashing my wrist. I can’t take art gigs that involve lots of hours plus long drives alone. I have some great plans and ideas about the beautiful studio, although we’ve all had to do a lot of creative thinking about the studio as there’s been a bunch of problems and plain bad luck that have made things very difficult.

The long and short of it all is that I’m basically needing to relaunch my business with new products and services and a new format. And I’m finding it hard! I’m so tired and not getting time off, I’m all worn down and lacking in the spark you need to start something new. I was talking to Rose about it all last night, how blocked and stuck I’ve been feeling. I haven’t had a spare moment to write in a week, which is really sad. Every single time I go along to college I realise afresh just how hard it is for me to work as an artist. I have such huge blocks in my head about what art is and what it means to be an artist. I’ve grown up with a lot of rubbish, unhelpful ideas that have limited me. Some of them – like it’s wrong or bad to be queer, I’ve been able to make a lot of progress on getting rid of. Some of them are just super stubborn and I feel like I’m constantly bashing my head against them! Art is one of these. Rose’s amazing support has made what I’ve done so far possible… with her extremely busy and navigating the stresses of transitioning from shift work over night to a a regular 9-5 job, there’s just me and my head. It feels like being tied up and thrown overboard and told to swim. I’m trying really hard, but it’s not working! Last night I talked about how insecure I feel, how inferior my art seems, how exhausting it is trying not to be overwhelmed by feelings of inadequacy and self hate. It’s so hard to keep putting myself out there and finding that place of confidence where my self esteem isn’t tied to my work and where I can connect with the a customer and what they are feeling and need instead of being overwhelmed by the storm going on inside of me.

Oddly enough, just being able to name the block, to talk about how ashamed and afraid I feel, how small and insignificant, how presumptuous, grandiose, inelegant, and ignorant I feel, has made a huge difference. Oh, there’s days when I’m not like this, parts who don’t feel this way. But wow, there are a lot of days where neurosis and exhaustion dominate. I had this idea that with the great support I’ve had and some experience under my belt it wouldn’t be like this anymore. I’d have graduated from insecure fledgling to Flying Eagle, confident, secure, capable. Hah. That hasn’t happened. And trying to be Flying Eagle when I don’t feel that way at all, and hating myself because I’m not, is making things 4,000% worse. Ah well, it helps to name it! Apparently I am currently more destined for the role of Neurotic Eagle. Never mind, it’s not as if neurotic artists are a dying breed. It’s a pretty big club. So, I’ve regrouped. I’m going to talk about my fears and get the support I need to keep flying. I’m going to accept that I’m not, or at least, not everyday, Flying Eagle, and that that’s okay. Great art gets made by the Neurotic Eagles of this world too.

I’m reminded of that most wonderful pair of books, The Neurotic’s Notebook and sequal, by Mignon McLaughlin. “The neurotic feels as though trapped in a gas-filled room where at any moment someone, probably himself, will strike a match.”

Have a good one, everyone x

What is a man?

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.

Demons

Today has pounded me into the floor. Damn, some days are just hard. Not enough sleep, off for a stupid fasting blood test this morning. I hate these things. I have a phobia around needles – actually just of giving blood or getting drips. Other forms of needles don’t bother me. These two I really struggle with. I’m not brilliantly well still, hot flushes, nausea, sore throat, sinus issues. This is not helping my general sense of vim. The bloods nurse couldn’t find a vein and wound up getting another nurse in, while I sweated and trembled and generally hated the universe. I ran errands, trekking from store to store in a futile attempt to buy the supplies I’ve told to buy for college on Monday. I also went to a bunch of printers trying to find somewhere to create arts prints, without success. I am at least now prepared for a workshop I’m running in a couple of weeks.

Some days are a real uphill climb. My head is on a loop of ‘I hate myself’ that occasionally alternates with ‘Did you know I hate myself?’. Which is somehow worse, and driving me a little insane, hour by hour. I get the notion of slicing off an ear in an attempt to get some peace. I trek off to see the psychologist I’ve been working with for our last appointment before she retires. I’m usually pretty good at last appointments, doing a summary of where things have come from, wrapping things up, making eye contact, saying thanks. Sad but good. I started this one by sobbing incoherently for 10 minutes. Actually I started it frantically on the road late, because today I found it impossible to keep track of the time.

After talking about the frustrating mess of all my plans and poor health, I cried about how hard this is some days. How the sense of failure dogs me, despite my awareness of how dangerous it is to let it take hold. How exhausted I feel by the disjoint between the beliefs I nurture and cherish, and those I’m still suffering under from my own childhood. Like heavy weights that have fused into my skin, the self hatred, the sense of futility, that it doesn’t matter how hard I work, how talented I am, or how many skills I develop, nothing will work out. These things are the demons that torment me. I choose to live according to other beliefs, and they are real to me too, things in my bones that give me strength and courage. Places where I find joy and peace. But some days are without much in the way of peace. Then we said goodbye and I left.

So to hell with that. I’ve found company and something to do for the evening. Change of clothes, switch, put my boots on, walk away.

What to do with a suicidal part

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.

Your problems are your fault

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

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

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

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

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

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

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

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

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

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

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

Sleepless

I cannot sleep. I had a quiet day, doing a little housework and resting much. The sublime experiences of the previous night settle, as I knew they would, but in peaceful domesticity there is a peace, moments of contemplation to ponder and connect with the memory of transcendence. I spent the evening with Rose, then read in a warm bath to try and ease pain, and came to bed. I’ve since read two books, written a considerable amount on my own book, and find myself exhausted but not sleepy. My mind will not let go and fall into sleep. It’s so peaceful here that I understand and cannot admonish it. After weeks of screaming pain, and no certainty about who will wake from slumber, it’s easier to claw back the small hours and breathe into the peace than surrender to oblivion. They are hours stolen from tomorrow though, which I will certainly regret if we wake early in pain.

So I’m back to bed again with a mug of warm milk, a piece of chocolate, and some more books. Poems by Judith Wright. Jekyll and Hyde, because I want to see if my version has an introduction that was mentioned in a another book I’ve just finished. And Death is a Lonely Business, by Ray Bradbury, because it perfectly matches my mood and it’s been a long time since I last ran on the beaches with Constance. I might not be sleeping, but I am certainly in good company.

Soul

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:

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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.

To all mothers and not-mothers

I wrote a poem a long time ago about the loss of a child, and the new not-mother. Sometimes our language falls far short. We have a term for husband or wife bereaved, but so many other states of longing or loss or love that go nameless. I have wanted to be a mother for a long, long time. I have dreamed of it, over and over, of carrying a child, birthing, raising. Of dead children, lost children, no children. On Mother’s Day each year I now find myself at a strange crossroads between honoring my own mother, mourning Rose’s pregnancy losses, and acknowledging my own history of longing and grief. I’m struck by the thoughtlessness of a day that is supposed to be about sensitivity and love. There’s a lot of pain beneath all those pink cards and tides of flowers. A lot of people hiding out at home hoping the day will pass quickly, or attending events and concealing raw feelings. For some of us this a day of grieving. We mourn for mother’s we have loved and lost. We mourn for love we hoped to get from mothers who were absent, or abusive, or overwhelmed. We mourn for children who would not come, or did not stay. We mourn as outsiders of little families who build walls around the lights that are their children, who bestow blessings – you may come and kiss – and withhold them – you may not. We mourn as those who tangle in the bonds of family, half nurtured but half strangled by loves’ obsessions and dominance. We mourn with those who did not wish to be consumed by the word mother, who were visited with life too early or too late, at the wrong time, with the wrong person, and unstuck the hook that snagged and tore a hole. For all the blessings and the sorrows that do not have a day, that walk today instead, unwelcome, barely spoken, breathing under our breath. Beneath the sweetness is blood, is rage and darkness and confusion and terror and love.

I spent my years weeping in the baby things aisles of supermarkets. Reading a biography of Mother Theresa, I decided to myself biology was only one way to be a mother. The pain eased a little then. Each year now I give Rose a gift on this day, we light a candle, we talk about her 6 babies who could not stay. ‘They are always with us’ I tell her. ‘They are part of our family, and they don’t have to only be remembered with sorrow’. I recall with rage the lack of care with which she has been treated on this day, bereft and uncalled on, having to stand, identified as a not-mother. That is not how she is treated here, in our family. This year I lost my friend Leanne, who died in her sleep with her face cupped in her hand. She was a mother, of a kind, to me. We all need more than one person who loves us deeply, who tries to guide us, and falls short, and watches us try to fly and fall and fly again. I remember her too today. Today I’ll give a gift to my own mother, whom I love. I’m blessed that she is still here, children grown, flying and falling and flying herself through the strange, complex, sad, beautiful experience of life. Love, to all mothers and not-mothers.

Dignity

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From James Frey’s A Million Little Pieces. Dignity and self hate and pain and mental illness… The self loathing that comes from being treated without dignity, and the lack of dignity that comes from making choices fuelled by self loathing. It’s a perfect spiral. Anyone with a diagnoses of Borderline Personality Disorder is probably intimately familiar with it.

Poisoned

I’m sick. Rose has been sick with her cold, the ear infections, and a fun tummy bug as a little gift at the end. She’s on the mend. Zoe has been sick with a terrible ear infection. It’s improving but only slowly. She’s on steroids which make her eat and drink more and need to pee during the night so she currently sleeps in the laundry overnight so she doesn’t wet her bedding. I’m a mess. I’m extremely depressed and spend several hours a day crying. My fibro is bad and my pain levels have been too high for too long. I’m good at managing chronic pain but when the base line climbs too much I find that it effects my mood and thinking. My brain gets noisy, my mood crashes, and I find myself getting angry at everything and hating myself. I’m lonely and miserable and awful company. I have a bad sinus infection again, I’m now prone to these since my first severe one a couple of years ago which was caused by a rotten tooth developing an abscess that travelled into my sinuses. I’m beyond frustrated by my inability to stay well, and into a place of despair. How can I work when random months of the year my immune system crashes and I develop such terrible illnesses? Last time the sinuses wiped me badly enough that I also developed tonsillitis, laryngitis, bronchitis, fluid in my ears and a kidney infection. I was beyond miserable and in a private hell.

I can’t bear cheerfulness, it hurts, and it makes me angry. I feel so frustrated and enraged, so hopelessly inadequate. I get windows when the pain relief is working when it all goes away like a cloud blowing past. I come back, and I feel whole, and I can smile. There’s a playfulness, a gentleness in me, a sense of quiet hope. When the clouds come back there’s rage, and a self loathing so intense and overwhelming that I feel poisoned by it, impaled upon it and all efforts to lift myself off only drive the blade deeper into my belly.

Tell me you don’t want me to hate myself I sob to Rose. I feel like I’m trying to give you this gift, that I know I’m useless and pathetic and not trying hard enough, but don’t worry, I’m punishing myself. You don’t have to hate me, I’m doing it. She brings me tulips and watches TV with me. Of course I don’t, she tells me. I love you. I’m like a badly wounded dog, biting at everything. I’m scared I’m going to bite someone else so I’m gnawing on my own limbs and there’s blood in my mouth and up my nose and it’s only making it worse but I can’t stop.

My skin is blistering and my eyes hurt. Admin is a pit of terror, my own failure and inadequacy. Every day I’m a step closer to finding out how badly I have stuffed this up and put a number to the amount I will owe. I try to be stoic.

I have a big assignment due on Monday. I’m starting to fall badly behind in my studies. I listened to the tutor talk about so many artists I’ve never heard of, with such envy. That world is slipping away from me. I try to get the basic process of experimentation through my head, that is okay to ‘waste’ paper trying something out. It’s the simplest idea, but my brain is molded to years of poverty and lack, I can’t replicate it at home. So many dreams that feel as fragile as glass. I need to get better.

I’m writing. I can do that. It’s messy and the threads are hard to follow, but that can be fixed. I lose myself in it, I focus and fall into it and my mind is clear in that place, no noise, no biting. It doesn’t hurt. My wrist is braced while the tendons heal but the writing doesn’t hurt. I write in bed, in the garden, at my computer, in the bath, by the fire at my local pub. It feels tenuous, like a last ditch effort to have a toe hold in the world. It feels liberating. For so long I’ve been diplomatic with services in mental health who have broken my heart by becoming everything we don’t need more of. There’s a kind of freedom, a sadness, a gladness, a despair in nailing my colours to the mast and saying No! You are not lighting the way. You are part of the problem. (how am I supposed to get work, ever? This is hopeless) I can hear the critics in my head. The mainstream saying I’m far too harsh and the things I’m criticising them for are old problems, they don’t happen anymore (they do). And I can hear the outsiders saying I’m far too soft and give too much ground and people are never helped by the mainstream (they are). That’s a familiar place to be, in the middle of the war with everyone upset that I’m not on their side. That’s probably about the right place to be. I know who I’m writing for, it’s people like me 6 years ago, frightened and unsupported and trying to navigate the world as a newly diagnosed ‘freak’. Maybe something will come of it.

Pain

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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.

Body paint & poetry

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For the Regeneration celebration night recently, I decided to paint myself and do a short poetry reading on the theme of Love & Madness. It was a challenging situation to create atmosphere in, I had only a few minutes, no stage, no special lighting, a projection screen behind me that remained lit throughout my piece, and an audience mostly unfamiliar with my work. I chose a small collection of poems about Rose and I that I haven’t shared before. I’ve never painted myself for a public performance before and I was curious. I left on a black bra and skirt, and painted starting at my feet and working my way up. I had very little time and created the whole piece in about 40 minutes, which was a challenge. Sometimes the simpler option is actually harder, just standing up and reading something didn’t move me, didn’t scare me, didn’t excite me. I actually resented the opportunity. So we asked ourselves, if we could do anything with this time, what would it be? And the answer was something dark and wild and free. So we did. And it was good

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Riding it out

Things are starting to settle down again. Rose and I both dosed ourselves with some phenergan last night and got the first decent sleep of the week. I’ll probably do the same tonight, then this weekend is the wonderful, long awaited Medieval Fair again – and I’m camping out there for the whole weekend. Camping always helps me to sleep so I that should be a big boost forwards too. Not to mention that a whole bunch of friends are going to be there and I’m feeling really excited and relieved that I’ll be able to float around a little spacey in the happy hubbub of it all.

Today started well. I’m still so tired, heartsick. In recovery. I decided that this week was a write off, I’ve been doing whatever I feel like (mostly staying home in my dressing gown and working on my book/s) and doing just enough admin to keep life ticking along. It’s getting easier, finally, the admin. I print everything, I do my best to work around issues I know are tough, like phone phobia, and I keep lists and tackle small portions with time limits. I went to see my shrink recently and we discussed my exhaustion and pain levels and how unmanageable the business plans feel now that Rose is working nearly full time in a different job. She laid on the line that it was time for a major restructure to make things manageable before I do a major crash – which is where I was up to but it’s helpful sometimes to have that from a person in some kind of authority. There are things I’ve been able to do with Rose being available to support me so much – like face paint up at Monarto Zoo because she handles the drive there and home, that without her I simply can’t do. There isn’t a choice not to change things, it’s merely one of timing. I change them now and just have a period of adjustment, or I wait until I crash and wipe out my health as well as my old business format. The biggest issue I’m having is chronic pain, which is particularly from the dreadlock work, and also the face painting. I do have a bunch of other possible business ventures that cause me a lot less pain, which it looks like I will have to figure out and move into. I am hoping to get back into my studio next week and start setting them up and rewriting my website. I also have an appointment booked for my accountant to get all the work I’ve been doing assessed and make sure I’m on the right track to get all the over due reporting finished. I have to move a bit slowly, with all the stress both my physical and psychological health are rather vulnerable at the moment.

I don’t have a clue what to do about my degree finishing before I can finish it yet. Still mulling that one over. I missed classes on Monday due to crisis and chaos and being back in hospital with Rose. This Monday I’ll start up my photography class and get back into drawing. I’m hoping to find my favourite Sculpture tutor and ask some advice. I also have some frightening appointments with Centrelink (welfare) coming up which I hope I’m ready to deal with. It’s all a little scary and unstable. One step at a time.

2014-05-01 12.20.03-1So, this was the start of my day. Actually having food is a step forwards. The research one of us who is starting the book layout work tends to work obsessively and rarely eats. So much of this is about riding out the processes and gently steering them away from the rocks.

Talisman

It’s funny, I’ve started carrying the first draft of my book outline with me everywhere. I went to bed last night and couldn’t sleep, so I wrote ideas in it into the small hours. I slept beside it in the bed, and when I woke up, I took it with me into the garden with the first cup of tea of the day.

A lot of the day was hard. Bad pain, not enough sleep… Whenever I wake up, the memory of losses floods me and my adrenaline spikes. I’m alert and feeling ill and unable to get back to sleep. It will pass. Whenever I touch the book notes, something in me calms. They are some kind of talisman for the easing of my heart.

It sparks a memory, of being a student at school, caring with me at all times my huge blue folder of poems. It was my lifeline, my shield against that world. I don’t write in my journals as often these days. I have Rose, and other people to talk to, there’s less quiet moments in my day that lend themselves to poetry, and I write this blog. I don’t know how long this passion will last, if the spell of calming will wear off. For now, I’m grateful.

I’ve been speaking a lot lately with people about crisis and multiplicity and being a carer and recovering from trauma and grieving. It’s really crystallised for me that I do have some unusual ideas and approaches that can be helpful for other people at times. I have come through a lot, learned a lot, been able to put good ideas and good advice from others to use. There’s a sense of purpose and meaning in this work that is keeping me going at the moment. Perhaps the best part of it is that it doesn’t cause me pain. I can write on bed, at my desk, in the bath, in the garden, but it doesn’t hurt the way almost all the rest of my working life does currently. That’s a blessing indeed.

I’m writing

I woke up this morning with a book in my brain. I’m sad and short of sleep (read, not able to sleep much), and there’s a sense of sorrow that I’m carrying around, a kind of tiredness of spirit. Writing at the moment feels like lighting a candle and warming my hands at it, or a small fire. I can sit and stare into it and all the things that are aching recede. I’ve been talking to a lot of people lately about where to start and which book to work on first, and I’d settled on the plan of a small collection of poems, paintings, and essays about suicide. This morning I woke up with my whole alternative framework for understanding and working with multiplicity in my mind instead. A friend had expressed encouragement for that one a few days ago and it seems that’s the fire that wanted to light. Maybe there’s a little too much grief going on for me at the moment to work on the other.

So I’ve been putting together a framework, drawing partly upon things I’ve already written here on this blog, and talks I’ve given, but sewing it all together into something coherent and sequenced. I think people are going to find it much easier to follow than skipping from blog post to post. I’m still debating about whether to include a section on multiplicity crisis support, or keep this for more general principles and stories about engaging multiplicity. I don’t want to make it ridiculously long and detailed, but I do like to read things that are thorough and well thought out. Hard calls. I have a bunch of people keen to read a draft which is very exciting, and I’ve got an appointment booked on Friday with a friend to review the planned structure.

I had to interrupt the flow this afternoon to head off to be part of a reference group, supporting the development of sexual health training for mental health workers. Unfortunately in that time another 3 books turned up in my head and tried to write themselves. o.O True multiple style, sigh! So I’ve drafted some notes about them to put to one side for now. The timing is a little frustrating, I want to get my studio running and the last of my paperwork sorted. But I’m not about to argue, the impulse is there, the joy, that hint of obsession, my brain writing and re writing things while I’m trying to concentrate on other tasks. Might as well run with it.

Now I’m off to cook dinner for Rose who has done a stellar job at her first day at work. I’m making creamy lemon chicken pasta and there’s leftover peach cobbler from the other night. Life goes on.

Let there be a dawn

Today was so hard. I am beyond exhausted and into dissociative. But I’m still here, and the day is almost over. I’ve curled into bed with a pounding head and a body that feels like it’s been kicked too many times and a heart that feels like it’s been put through a mangle. I know it will be okay, good things will come out of it, we will plant good seeds and do our best, and in some moments I’m able to find that sense of grace and compassion in amongst grief and pain. Rose and I have lost another friendship dear to us, not through death but by… Well it’s not easy to sum up and I don’t want to expose anyone. For the moment at least, people we care about have pushed us away. It was a big shock. I’m glad for moments of perspective and hope. The rest of the time, I feel like life just keeps crashing big waves over me. I’m not swimming at the moment, I can’t even tell anymore which way the shore is. I’m drifting with the tides and trying to keep my head above water. We kept everyone safe today, no self harm, no suicidal gestures, no ambulances called. We grieved and hurt and got angry and grieved some more and talked and switched and talked and found other safe people to talk to, and night fell when you’re allowed to go home and not be strong anymore or try to understand other people’s perspectives, when you can go to bed and curl into a ball and cry because sometimes life is very hard, and because you’re hurting, and people you care about are hurting too and you can’t make it better for any of them.

Funny how things that felt solid yesterday feel fragile today, the wind blows and the paving stones tumble down the road with the leaves. Pieces drop out of the bottom of your world and you find that you’re standing on air, nothing between you and the void. The threads of love that bind us here are soft as mist. You send a prayer flying like a bird from your throat, please let us all see out the week. Please let there be comfort and ease from pain. Don’t let the darkness last forever. Don’t let tender hearts break in vain. Keep us tender, as we were meant to be. Give us rest. Let there be a dawn to all hopes. May grief wash tomorrow new and green.

Sleep tight, strange and painful world. May the love that breaks us also strengthen us. May the cracks let the light in.

Zombies

I finally got a decent sleep last night! At first I woke at 7am again, with bad pain, and I thought today was going to be another killer. Fibro quickly gets into a nasty cycle where the pain makes it hard to sleep, and not getting enough sleep makes the pain worse. Fortunately I remembered that the light was probably also bothering me, and after covering my eyes with a soft old t-shirt, I dropped back to sleep.

I dreamed furiously though, huge, portentous dreams of world ending catastrophe and terrible, suffocating dread. Blood red moons rose over black frozen landscapes, people had secret agendas that left just a trace of something wrong and uneasy but impossible to really explain about them. In one, my nearest and dearest turned into zombies, fast, lethally intelligent, and driven by malice. When I woke I cuddled into Rose and told her about her chasing me as a zombie. She held me close, nuzzled into my hair and whispered ‘mmm brains’. So I tickled her until she screamed.

She’s on the mend at last. Still very sore and tired, and needing a lot of pain relief, but the antibiotics are finally starting to do their thing. Lovely people came around yesterday and walked Zoe and mopped floors and my unit is just beautiful! Today is going to be a lovely day. 🙂

Epiphanies & baths

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I started my day in the bath today. It was really nice. I’m still super tired and in a lot of pain, and today I’m working face painting at the local zoo again, in the cool weather which is hard on me. But I slept well, and actually woke a lot earlier than I needed to, with things bubbling over in my mind. If have liked the extra sleep, but it was nice to wake up feeling so hopeful.

I’ve had some really helpful conversations lately and things are crystallising in my mind. It’s about frameworks and how things are approached… Like baths. I like baths, they’re a place I feel safe, they help with my pain, and I like relaxing in them with candles and a good book. But often I find I don’t want to be in the bath, I feel blocked and frustrated. Sometimes I can figure out why, like I’m not feeling comfortable enough about being naked, or the harsh light in the bathroom is bothering me, but sometimes I just don’t want to… I think it’s my approach. You know how when you’re having a really bad, overwhelming day, someone can offer to make you a cup of tea in a way that feels gentle, respectful, caring, nurturing…. Or someone can offer the same cup of tea in a way that makes you feel patronised, dismissed, like they think you’re pathetic, over dramatic, useless. It’s not the cup of tea. It’s the relationship, and the way you approach it. It’s the implied attitude to you.

When I try to make myself have a bath as if I’m an impatient, frustrated patent with a whiny, irritating kid, it sucks. When I run a bath as a luxury, a treat for working hard, something love for myself, it’s not the same thing at all.

It’s a small thing, but it’s powerful. And it’s playing into my business stuff too. I’m constantly trying to prove myself, prove that I’m a hard worker, that I’m not lazy, that I do my best, a whole bunch of things that no one but me is in doubt of. I think of myself and my skills as resources to be consumed, I fit myself into whatever the client needs me to be. I give myself to my work and I’m burned up by it. I woke up this morning with the idea of my skills as something valuable to be protected. Like a gemstone that’s displayed to its best, put where it can shine, but looked after. I felt this sense that people around me care for me and see as having worth and don’t want me to be consumed by my work. They are trying to protect me.

Maybe it’s the difference between an open cut coal mine, and when the coal is gone, it’s all gone, and tending a herd of goats for milk. Or perhaps, not killing the goose that lays golden eggs…

Maybe it’s about having a sense of worth.

I’ve resolved to take better care of myself and stop selling myself as being really flexible and available, but move towards being more exclusive and working around various limitations. So I’ve been pressured to take work that starts in the mornings when this is really hard for me, my pain levels are always worst in the morning and late at night. But when I turn people down I feel bad, and anxious about my reputation, and that this is poor business practice. Today my resolve was tested when Rose and I had to reschedule a client as she’s still incredibly ill and unable to work. They were so cranky they refused to rebook. It was a rough way to end a morning that had felt so golden, but we do not need every bit of work that comes along, and we cannot do every bit of work that comes along, and no one who is as sick as Rose is should feel bad about not being able to work. We’re going to have to get tough about looking after each other and protecting ourselves from the unrealistic expectations of others.

I’ve been in start up mode for a long time, between the DI, face painting, and other plans. Start up mode is mad, you think about, breathe, dream, live your obsession all the time. There’s a constant drive to grow it, make it work better, fix problems, think of better ways to do things, it’s almost hysteria. Then there’s maintenance, when the framework is there and now you just rock along, doing what you do. Even if I can’t be self sufficient like I hope, I need to shift over to a maintenance mindset. I don’t have what it takes to stay in start up, especially not by myself. That doesn’t mean new things can’t happen, but the focus is different, gentle, less urgent. I get time off. I get help and support. I don’t use myself up. I don’t try and prove things. I find small teams for projects, so I’m not working alone.

I’m writing in the quiet moments of face painting, so I don’t feel that this is as coherent as I’d like, but somewhere in the ramble, there’s a sense of hope, even if joy, that work can be wonderful again, something I like and look forward to instead of something painful and exhausting that claims me and makes me feel like I’ve failed. I feel excited about changes and it’s wonderful to have other people be excited with me, concerned for me, looking out for me. I don’t feel so small and scared and inadequate. Something will work, even if it’s not what I first planned.

A study in contrasts

It’s been a mind bending week. A few nights ago, I was sleeping on a lovely bed with room service for breakfast and a private spa bath, last night I slept on the floor of the local ER with hospital cornflakes for breakfast and I can’t remember when I’ve last showered. There’s something about spending the night in the ER, no matter how freshly washed you might have been when you went in, you always feel grimy and smelly when you come out. I’m so exhausted and sleep deprived at the moment that everything feels upside down and inside out, days do not progress in an ordinary linear fashion and my sense of time has gone compressed and surreal. The short version of my week is this – I had a wonderful birthday and a party around a camp fire where I was thoroughly spoiled by friends. Rose then swept me away for a romantic surprise holiday in a fancy country club for a lot of luxury and pampering over three wonderful days. On the last day Rose started getting sick, I brought us home and since then we’ve been doing the rounds of locums and trips to the ER to manage 2 severe ear infections. Zoe is also sick with ear infections so I’ve taken her to the vet and she’s on drops and tablets. I’m near collapse with exhaustion and lot of bad fibro pain. I have managed to keep enough housework happening that we have clean socks to wear and clean bowls and spoons. I’m also supposed to be in the middle of a crazy 5 full days of work and study, but as I got about 3 hours sleep last night I cancelled today.

It’s been a really full on couple of months. We’ve done the house move with Rose, the sudden death of my friend Leanne, we’ve opened our studio and had our first dreads clients, then Rose has been suddenly offered a fantastic job on a nine month contract and accepted that, I found out that the government has ceased funding the Bachelor of Visual Arts degree I’ve been working on for the past several years, which leaves me with some difficult choices to make as I cannot complete the degree in the remaining time it will be offered, I’ve finally made sense of my paperwork and some major headway on my backlog, and a couple of dear friends are planning weddings and have invited me to be involved. I took my car to be serviced and discovered there is a huge crack in the firewall which will cost about $1,000 to fix, so in the meantime I’m borrowing vehicles to get around. There’s been so many ‘hurrah!’ and ‘oh crap’ moments that my head is about to fall off.

My business plans are in disarray, I’m physically exhausted and struggling with constant pain, and need to do a major overhaul of the plans for the next year in light of everything that’s happened. It’s not all bad news, a lot of it is very exciting and there’s some great opportunities happening. But I am confronted by the reality that what I am doing at the moment is not sustainable. There’s nothing like having a couple of days off to really notice how overwhelmed you have become. At the moment I’ve just got my head down to get through this week, then I’m going to start making some big decisions about what I’m doing and how. It will turn out okay! I believe that.

This was the scene of my lovely birthday. Rose organised it and friends helped with lights (we forgot about that), a beautiful cake, and cleaning and suchlike. It was lovely. It was also kind of embarrassing and a bit stressful being the focus of attention, and there were guests who didn’t know anyone else who I worried about and people I think I should have invited but didn’t think to at the time, and people I wanted to come but couldn’t get hold of (some of my friends are very much non-tech and don’t even keep a phone running consistently) and a lot of opportunities for guilt and stress along those lines. However, for all my faults, I had a very nice evening and although some aspects may have been a bit awkward I think most of the guests did too. There was also bunting, and what’s not to love about bunting? 🙂

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We prepped a lot of food. We baked spuds on the fire and asked people to bring their own toppings as there were quite a few food allergies and special diets to cater for and I wanted to make sure everyone could eat something. I also baked up a big batch of apples with an oaty crumble filling that was delicious, and a quadruple dish of self saucing chocolate pudding. I ran out of phone battery so there’s no photos of these or the lovely cake.

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I made the usual chilly evening hot drinks too, a big slow cooker of hot chocolate, and a rice cooker of mulled mead. These were the flavours I spiced the mead with:

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I also got all creative and made up some little dread art in the form of tiny bird coils and silk sweet pea blossoms to wear. I really like getting to make things.

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We also had marshmallows around the fire. It was a big, hot fire, we used as much wood as I usually go through in three or four camp-fires! You can just see some of the fairy lights over the camp fire:

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The next day Rose took me away. It was a very watery weekend, I really love water. I swam in the ocean and had several spa baths a day. We were lying in bed at one point, feeling so clean and skin so soft and everything so lovely, and said to Rose how come this bed feels so clean? My bed never feels this clean even with fresh sheets. She said – your clean sheets are still covered with pet hair. It’s true! It was really nice to sleep on such clean sheets. This is one of my happy memories from the trip, I had a bath with a cocktail, some good chocolate, and a new book of poems we bought from a market that morning. All the hot spas really helped my pain levels too.

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Another good memory. We did lots of tastings of cheeses and olives and local produce. We kind of spent two days pretending we weren’t poor, didn’t have lots of responsibilities or work to think about, and weren’t short of time. I didn’t touch my phone or get on the net or social media at all. I didn’t do any thinking or planning about business things, didn’t answer emails or return calls, it was just uninterrupted time off. I often work evenings and weekends, and many of my days off are full of housework and admin. Taking a whole day off has become extremely unusual, and I find that there is a very blurry line between work and the rest of my life.

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For a few days, this wasn’t the case, and it was like turning back into myself. Without chronic pain and the constant demands of work I relaxed properly for the first time in months. I wasn’t irritable and overwhelmed, I didn’t feel that near permanent sense of not being able to catch my breath, that shrieking inner alarm that I cannot manage this that has been going off in my head since Rose got her job. I felt like Sarah again. I had fun, I relaxed, I enjoyed myself and could be present in the moment and breathe it all in. It is so difficult to be present when part of your brain is always managing admin, chewing on tough problems, trying to plan the next few months. It was nice. I want more of it. It doesn’t have to be about money or luxury, it’s a simple thing at the moment of accepting that I cannot do what I am trying to do the way I’m currently trying to do it. I want more capacity to enjoy the rest of my life and I want less time in really bad pain.

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The very first thing we did on getting to the hotel – shift all the mini bar contents to a drawer, and close it!

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I found this beautiful old clock at a market, my next door neighbour Aunty Marie used to have once just like it when I was a child. I’ve wanted one of my own for a long time to remember her by. It was so nice to be able to bring home some mementos of this wonderful trip!

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Dinner brought to the room one night, we ate in bed. We lived very extravagantly, and there was a lot of cheese. 🙂

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A memory to treasure – we found a lonely fire by the bistro one night and sat by it drinking strawberry and lime cider while I read Something Wicked this way Comes to Rose.

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Lunch by the sea on the last day.

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My beautiful Rose. She’s such a romantic, such a generous partner and fun companion. I’m blessed to be with her.

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Exploring little towns and second hand shops, it was good to be away. I love travelling.

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And last night in the ER. I made a striking figure in my pyjamas. It’s so hard to advocate for yourself when you’re in terrible pain (ear infections are agonising) and the one thing I’ve found consistently through all hospital stays – whether for physical or mental health reasons is that it’s a better trip if you have good company. Someone who knows you can soothe you, help the pain relief be more effective by reducing your anxiety, can advocate for you – get you another blanket or find a nurse or ask questions or remind you about an important detail you’ve forgotten. More than anything, a caring companion journeys with you, you don’t have to handle problems alone. You are seen as someone who is loved by someone else, a person who is important to someone, a person who probably isn’t always as overwhelmed or hard to connect with because clearly someone else thinks the world of you. It changes how you are treated, helps to humanise you however you are presenting. It makes a huge difference.

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So for now, the plan is sleep, rest, reach out and connect to try and stop my head spinning so much, and get through the next few days before re-evaluating and new structure for the business. It’s going to be good, and I’m happy that it’s happening now, not after a major crash. I love Rose and my friends and family and my life and I want to spend more of my time able to enjoy what I have and connect with those I care about. 🙂

It’s my birthday!

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.

Zoe turned 2

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April is a month of birthdays at my home – mine, Tonks, and Zoe’s all come around in this month. Zoe kicks things off, she turned 2 years old this year. What a ride! She’s hardly recognisable from the crazy puppy who drove me to despair. While she’s still bright and bouncy and loves people, she’s happy to chill on the couch while you work and sleeps inside in her crate at night with a minimum of fuss. No more chewed furniture! She’s pretty cruisy and easy going.

I was reading a book about shamanism recently which suggested that animals teach us things about life. I thought about what I’d learned from having Zoe in my life. It’s been a tough run at times. I was so overwhelmed by her and how much exercise she needed (I live in a unit) that twice I made concerted efforts to find a different good home for her. At one stage I was a mess of guilt and frustration, constantly yelling at a dog who was shredding my house, stressing my guests, and on one occasion, raced over my foot and broke my toe! I got in a behavioural consultant for help, which was a huge, huge support, Rose and I knuckled down and spent Saturday mornings at dog training, and we put a lot of effort into environmental enrichment and a better relationship. I was thinking that the thing I guess I’ve had to learn with Zoe is how to see the Zoe who is in front of me. When I took home a gorgeous little pup from the shelter I was single and lonely, looking for protection at home, looking for companionship, and after nursing Charlie for months, looking for a really healthy, strong dog. I got that dog, for sure. But as she grew up a little and my life circumstances changed with a new job and a new relationship meaning I was away from home a lot more than I had been, I found myself with a bored and lonely half puppy in full destruction mode. It was a big shift! She destroyed 2 couches, a lot of clothes and sheets, stole items from around the house (books, nail polish, socks) and buried them in the backyard, chased my cats… Some days I hated her. As she’s grown older and I’ve learned a lot and changed a lot of what I was doing, a different Zoe again has emerged. This Zoe is still not absolutely content, she’s a bit lonely and wishes she had more walks and more room to play. But she’s boisterous rather than destructive, very affectionate and protective. Sometimes it’s hard to see this Zoe because the memories of the crazy, overwhelming puppy get in the way. But she’s right here in front of me, cuddling on the couch, nudging me to let me know she needs to go to the toilet, playing with Tonks, or watching the garden through the window.  It’s a valuable lesson, to see what’s in front of me.

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So, for Zoe’s birthday, she got a new chew toy which she adores, a lot of cuddles and love, and some food treats. She had a pretty good day. I love her to bits! 🙂

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Free Event Tonight – Join us to Celebrate Regeneration

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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

Paperwork

I’ve had a quiet week, turned down work opportunities, stayed home, and put in some major hours to make sense of my paperwork backlog. (about 3 years of business records) I haven’t been keeping proper records about my business income and expenses and it’s a big job sorting them all out. There’s a few reasons for this, one is that I’ve really struggled with phobias about money and admin that have left me very overwhelmed and muddle headed. Another is that it’s taken me this long, several courses, (including a cert 3 in home businesses), and help from an accountant before I’ve been able to set up a simple system for record keeping that suits my business. Most of the systems or advice I’ve been offered have been needlessly complex, full of terms I barely understand, and I’ve been utterly confused. I now have a physical folder in which income and expenses are printed and filed for that financial year. It’s less environmentally
friendly, which I hate, but it works visually, which is how I work. It’s easy for me to see what’s happening and check on things filed. I am using an app called invoice2go which generates my invoices, concerts them to pdf, and emails them for me much quicker than I’ve been doing manually using an excel document, and all from my phone if I wish. I have a simple sheet for income, and a different simple sheet for expenses. Generating profit and loss forms from these is child’s play. So I’m finally making progress.

I’ve been scouring the house for all those pockets of paperwork, random collections of receipts stuffed into tins, boxes, drawers, envelopes, and other ‘safe’ hidey holes. Even worse, I’ve been finding, printing, and cross referencing every previous attempt to input this data using much more complex forms. At some point I’ve scanned a couple of months worth of receipts and collated them, then lost both the original and scanned versions of the receipts. That’s giving me a headache. I’m looking forward to all this being over and moving on to running my new studio with a simple, relevant, accurate method of data collection in place. It’s going to be a huge weight off me! I have learned a hell of a lot!

So it’s happening. This is one of my biggest bogey men, a thing that has been hanging over my head for years, stressing me constantly and filing me with a chronic sense of guilt, frustration, inadequacy, and dread. I jumped into a business with enthusiastic support from people around me, but far before I was ready for this side of things, and it’s been a burden since then. I’m so glad to be finally sorting it out, facing the debts, and moving on. It’s a good feeling!

Tonks has been loving sleeping in my boxes of paper, so I accommodated and began using her box to store paper I no longer needed. This seems to be like cat nip, she migrated back to her box shortly afterwards.

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Good music and good company, sure helps when doing paperwork!