Fibro hangovers

Days like this are blah. I feel like I was up most of the night drinking and dancing. I was in fact, painting kids faces at Adelaide Zoo, then hanging around with some friends in my dragon onesie. Not a drop of alcohol has been imbibed by me this week, yet this morning I wake with dry mouth, furry tongue, headache, heavy limbs, and bad body pain. Fibromyalgia can give you hangovers for parties you didn’t go to. I feel awful and I have admin already overdue that needs attending to. On the upside, with some ibuprofen, time in bed, and lots of water I’ll bounce back okay. Looking forward to a celebratory dinner tonight with family and friends. Dimly aware that the rest of the world is off doing things and being productive. It’s a beautiful day out there, I wish I had a bed in the yard still I could lie on and nap in the sunshine. I’m drugged with phenergan and drowsy with bad dreams. Sometimes the kitten comes and sleeps next to me.  Life will just have to go on without me for a bit. I’ll catch up soon.

I got a stack of medical test results back recently which are mostly good expert that I’m running extremely low on iron and vit D, which my gp reckons explains the dizzy nausea episodes I was getting, and possibly some of the worsened joint and muscle pain too. Hopefully with some supplements and more red meat in my diet things will improve.

Ah well. I’ve been working hard lately. I’m proud of myself.

Imperfect bodies

It’s been a wobbly week, health limping along on training wheels. Yesterday was great, today is awful. I have endometriosis, which for me means very painful and heavy periods. Endometriosis is a condition where the tissue that lines the womb (the stuff that pumps up, ready to support a foetus if you get pregnant, and then every months sheds as a period)  grows elsewhere in the body, often through the digestive system, latching onto organs and tendons like weeds growing where they shouldn’t. This ‘weed’ reacts to normal monthly cycles the same, shedding and bleeding into the pelvic cavity where it can’t escape. This can make a mess of scar tissue and adhesions, and can cause awful pain if there’s nerves around those areas. Not everyone gets pain, it depends on where it happens. It can also destroy fertility.

I’ve managed for the last 10 years by taking a medium dose of the oc pill, on a continuous basis, that is, not taking the sugar pills except for three short breaks a year. That means only three periods a year, only a week long, and not severe pain. Before I was diagnosed and started treatment, my usual period lasted about 14 days a month, involved extremely heavy bleeding, and severe pain with at least three days in bed. I have vivid memories of trying to work at childcare and manage my periods, weeping with pain in the bathroom. I wasn’t diagnosed until I was almost 20, thanks to a male family doctor, an uptight religious community that treated normal functions as secret and shameful, and myths about what was normal. I’m angry as all hell about this, I suffered a lot as a teenager and was mostly treated as weak and lazy by people who didn’t know better.

Rose and I are now in pre conception care, gearing up towards pregnancy possibly next year. This January I stopped taking the pill so my normal cycle is back. The great news is that all the signs are good that the endometriosis has been contained and even reduced over the years, so my fertility should be intact. The difficulty for me is that I can no longer schedule my cycle around work and other commitments. It’s also frustrating because our cultural taboos against talking about this stuff mean that whenever I’m ‘just sick’ again I tend to come in for a lot of advice about not over doing it and tut tutting about needing to manage my health better. The truth is that none of that would help. What does help (me) is sleep, forms of pain relief that reduce muscle spasms, such as Naproxen Sodium, or orgasms, heat in the form of hot showers, baths, or wheat packs, and avoiding cold foods such as ice cream. My mood is usually very low and I find that I’m often teary and depressed. One or two days stuck at home very quickly leave me feeling lonely and miserable. When I’ve been under a lot of intense stress as a young person, I’ve had an almost psychotic response to the loneliness, secrecy, and pain of these experiences, such as nightmares that the pain was a demon clawing me apart from inside.

It shouldn’t be a big deal to talk about it. Many people have difficulties around menstruation, fertility, sex, digestion, and all the areas of health that we don’t talk about. It’s harder to get funding for cancer research for less sexy cancers. It’s harder to explain health problems like these to friends and employers. There’s a kind of bemused and patronising tone taken to people who ‘fail’ to live up to our expectations that adults can manage digestion, menstruation, and sexual health without anyone else ever knowing about it. Many of us are struggling with issues like these! I’ve seen women in such intense pain with endometriosis, they wind up begging for morphine in emergency rooms, and have to carry a letter certifying their condition so they are not mistaken for drug addicts. I can tell you these women are not just lazy or making a big deal about something everyone has to deal with! I’ve talked with women who have suffered through a long, painful struggle to get pregnant, too sick to work, and too embarrassed that something as ‘minor’ as menstruation causes them such distress to tell anyone but their closest friends about what’s going on.

These things are not that unusual. Embarrassment about them helps noone, especially not young people who are so particularly sensitive to shame and isolation. Every day, people are managing infertility, chronic digestive problems, recurring thrush, uti’s, and other infections, immune issues, and allergies to toilet paper, latex, lube, sanitary items, and their own skin and secretions. All of us are trying to find ways to manage with some sense of dignity, to still feel attractive when we dress up for a date, even if that means making 15 minute stops to pee, finding an outfit that conceals a colonoscopy bag, or trying to discretely manage menstruation while using the men’s bathroom as a f2m transperson.

Human bodies can be fragile, and leave us very vulnerable to shame. I generally don’t talk about my physical health challenges, mostly because I don’t want to make other people uncomfortable. I’m an activist when it comes to mental health but still very influenced by ideas that I shouldn’t embarrass anyone else, and shouldn’t complain about physical health problems. I’m feeling a bit fed up about those ideas. Shame is for people who have done something to feel bad about. I just happen to inhabit a body that is lovely and fragile, and that has issues in some areas like menstruation that we don’t, as a culture, like to acknowledge. I know I’m not alone and I’m tired of feeling alone. I’m not any less of a person, I have nothing to feel ashamed about. Being sexy and adult isn’t, in my opinion, about being able to maintain mystery about our bodies. There’s a humility about inhabiting a body that doesn’t work perfectly, intimacy about being forced to acknowledge our shared vulnerability as people, at having our lovers or house mates understand these needs and at times care for us. No one is healthy all the time. As much as people might like to pretend otherwise, whether as children, in our age, or due to sickness or disability, we all at times will need help and support with intimate functions and for issues we find confronting and embarrassing. All of us will love people who have these experiences and struggle with feelings of shame, ugliness, and degradation. We can let this isolate us, or we can rise above it and embrace the tenderness and humour of having imperfect bodies.

See more like this:


Some nights you weep

Yesterday I got just enough sleep (4 hours) to pull off my day of work at Monarto Zoo, but not enough to feel okay. I was able to get to sleep much earlier than my current usual time of 6am with the aid of warm milk, growing chronic sleep deprivation, and Rose kindly reading to me over the phone (which seems to be the only reliable sleep aid I’ve found so far). Sadly I then woke, entirely unnecessarily at 6am. Zoe was then very painful and I nearly strangled her. The morning was spent sobbing in bed in frustration as the lack of sleep set off severe fibro muscle pain and nausea.

My sister was sleeping over and came in, our two kittens trailing her to romp on the bed. Funny how just the night before I’d been discussing with a friend the different way people cope with someone not feeling okay, and how it often seems to be the way you try and do something like be companionable or cheer them up that matters most to whether it feels warm or dismissive.

There’s been so much going on for me in the past few weeks. A funeral, a range of new work, Rose is having a shift change at her work that will hopefully be much better in the long run but messes up my calender in the short run as I was booking things in around shifts that wont be happening anymore. Painful stress in some very close friendships, difficulties with Bridges and DI things. I’m doing my best to give all these areas the time and attention they so deserve, and to bring my very best skills and patience and courage to them. I’m very tired, and doing my best to be ethical and to be an advocate for myself. Sometimes when relationships break down there is this strange and painful space where for some reason, caring about it and being hurt about it is not seen as evidence you cared and were invested, but is construed as you being overly emotional and difficult. This morning I had run out of the ability to think over all these hurdles and maintain an even emotional keel. There is at times, just a keening pain, and it hurts so deeply that it’s impossible to imagine that life can be wonderful also. When it comes over us it takes away everything else and leaves me breathless and suicidal.

It was good to have a space where I didn’t have to be okay or have an adult, intellectual perspective. To reach out and just lay a hand on my sisters shoulder and feel the warm presence of another person seep into me, like warmth, grounding and connecting me back to a sense that my life was meaningful. I made us coffee and banana smoothies, then went and stood barefoot on my lawn to water my garden. My poppies are in bloom. Then I dressed and drove up the freeway to work, and painted children, and read a book in the quiet times, and ate a little, and drank a lot, and drove back to Rose’s place to share in a pizza evening she was having. I was trembling with exhaustion and we went to sleep holding hands until she needed to go to her night shift.

1-2013-09-29 09.30.51

Home after, and tired and sad and wishing my life did not hurt so much. Wishing I lived in a caravan or tent and could hear the wind. I’ve been broke and out of antihistamine for days, my skin is red raw with hives. They are especially bad when I’m under emotional strain, or grieving. I used to describe them in poems as my skin screaming.

There’s a path forward and it has beauty in it. Some days you sing the road beneath your feet, some nights you weep it.

Empathy and bullying

Amanda Palmer wrote a piece about empathy and cyber bullying on her tumblr recently that I found thought provoking.

I think people misunderstand, sometimes, the difference between “empathy” and “sympathy”, and this is getting us in trouble. Sympathy is closer to pity. Empathy, which is essential for being human, means that you can imagine yourself in some else’s situation, good or bad. And feeling *real* empathy, even empathy with “the enemy”, with the bottom of the barrel of humanity, with the suicide bombers, with the child molesters, with the hitlers and the osamas, is necessary. If you, as a human being, can’t stop and try to imagine what sort of pain and agony and darkness must have descended upon these people to twist them up so badly, you have no roadmap to untwist the circumstances under which they were created.

via i was just answering a bunch of questions for a… – AMANDAPALMER.TUMBLR.COM.

I wrote this as a comment on the piece:

As if empathy comes only from our best selves, as if it’s only our kindness, or generosity that allows us to reach out and feel what another person feels. Our darkness also unites us in strange and painful ways, other’s pain or violence sings to our own, make claims of kinship where we wish there were none. We like to make the evil ‘other’ – those abusers, those nazis, those demonic monsters who have no connection to me, no humanity left in them. It’s painful to recognise that a lack of humanity is part of what it is to be human, that our humanness is vulnerable, it can be torn off, or cast off, and we can still walk and speak and eat and do violence. Empathy reminds us that the monsters do not merely prey upon us, they are us, defiled. It reminds us to treasure what makes us different from them.

It’s a topic I find relevant in many areas of my life, as an artist, and as a service provider in mental health. As soon as there is an ‘other’, you risk your bond to your own group by empathising with them. It’s one of the things that makes peer work so difficult and draining for me, the service users and the service providers can be strident and aggressive in their demands that I orient myself as one of them exclusively. I’ve lost count of the number of times staff in mental health have criticized me for ‘wearing my peer worker hat’ or my stance on how harmful our use of professional boundaries is. I’ve also struggled with how demoralising and painful it is when other service users criticise harshly, with no sense that you are also a person who is at times vulnerable, and that all relationships have some level of mutuality to them. Other peer workers can also be a group of their own, demanding adherence to their ideas – after giving a personal and exhausting talk at a conference once, I had to walk out of the next talk where a peer worker was berating a room of us for being insufficiently familiar with the world of academic research, and for getting jobs through people we knew. All groups place demands upon who is permitted to be a part of them. All groups have their ‘other’.

At a micro level, this dynamic of the ‘other’ and the risks of empathy play out in groups or friendship networks in my life in a way that wearies me. I’ve always empathised with the other, and this is the quality that people love in me when they find themselves being the other, and fear and resent in me when they find themselves hurt, stressed, or angry with someone else in the other role.

I’ve often been the ‘other’. I’ve been a lonely, bullied little kid who craved friendship and companionship with a deep longing that left me suicidal by the age of 10. I work hard now as an adult to be aware of the legacy of years of unmet needs, which tend to express themselves through numbness, bitterness, insecurity, and instability. I also work hard to resist the temptation to be comfortable in my groups, my social networks, and my work in a way that perpetuates abuse. As a service provider in mental health, I find this an extraordinary challenge. On days when I am too exhausted to do the hard work of diplomacy, to reassure angry and hurt people (which is not just the clients!) that I see their point of view, I’m at risk of rejection and hostility. It’s not a secure place to be.

This is one of the dynamics they don’t talk about in bullying. I moved to a new school in year 4. Due to a bunch of class dynamics that had nothing to do with me, I was instantly at the bottom of the social ranking and very vulnerable. Several students targeted me for bullying. This began a spiral of alienation and abuse that persisted for my school life. I was in a bad place where students who liked me were afraid to connect with me in case they were bullied too, and other students who liked me were afraid to tell their friends to stop bullying me in case they then became a target.

I didn’t stay at the bottom of the social network all the time. Sometimes something would shift my place in the culture. One year the class took up gymnastics and swimming in sports, where I excelled. I gained some respect in a subject where my appalling lack of ball skills and issues with feet and joints had left me the typical student chosen last for every team. Here’s the deal though, just because I was no longer on the bottom rung of the ladder didn’t mean the ladder had been dismantled. Someone else took my place, someone who was terrible at swimming perhaps, or embarrassed by wearing leotards in gym. There was always someone being made to feel excluded, being available for humiliation and power games, someone that everyone else could work out their own pain or frustration upon. Kids with disabilities that were insufficiently engaging to draw the protection of the teachers. Kids with mental health problems, or with abuse at home. Kids who were identified as gay (which is not the same thing as being gay).

One year in about grade 9, I’d cobbled together a small group of guys as friends. We would hang out at lunch, sometimes after school, even go to each other’s birthday parties. Another kid used to hang out with us sometimes. We used to play a lot of foursquare or brandy, fast ball games I was never particularly good at. On this day, this other kid was hanging with us, and he was terrible at ball sports and slow at running due to medical things. My mates were teasing him a bit, in a pretty good natured way, knocking the ball away from him so that he couldn’t pick it up. It wasn’t until he started to cry with frustration that my stomach flipped and the scenario that had seemed so minor and innocent a moment before suddenly became real. I was hanging out with a group and we were bullying the one kid lower on the food chain than we were.  I ran over to him to comfort him and told off my mates.

As it happened, a teacher witnessed this and I was given a slip of paper later that week commending me for being brave enough to risk my friends being annoyed with me. Having this teacher recognise the challenges of that situation and frame my response in this way anchored an understanding of the risks and issues of bullying for me that has never left me. I learned a lot that day, especially how unbelievably minor bullying seems to be when you are not the target. I also learned that without some kind of major social influence in the class or school – if you stand up for someone being abused you are always risking abuse yourself. Every time I got off that bottom rung, I’d find myself being forced into a bystander position to watch some other kid suffer. Groups of students roaming the school to hunt down the ‘gay kid’ and intimidate him. Older students roughing up younger students in the toilets. Girls humiliating and ostracizing other girls who were from poor families, or had accidents with menstruation, or who made the mistake of letting the wrong boy go too far with them.

These cultures cost everyone in them, they are built on fear, distrust, a profound need to fit in and find acceptance that seems laughable to adults, and a complex guessing game of social worth where a misstep can cost you all your allies. Everytime we tackle school bullying by advising the victims to behave in ways that make them less a target, we are also telling them to accept their role as bystanders to those kids who become the target next.

I had a weird relationship with many of the kids who bullied me. Those who had some kind of social power and were tormenting me out of boredom, sadism, or fear of difference I rarely got close to. But kids who tortured because they were themselves being tortured often had a strange connection with me. There was an empathetic bond. I heard their stories. I kept their histories of fear and degradation safe. These were kids who’s dad’s knocked their mum’s around, or whose older brothers were creatively abusive, or whose mum’s made them keep her company in her bed at nights long into their teens. With some of them, a space would be created for these conversations, like long bus school trips. They’d sit with me and talk, share funny stories or tell me secrets about painful things. They would meet needs for safety and honesty and compassion that they couldn’t in their own friendships. I would not get those needs met. At the end of the trip we’d all get off the bus with the unspoken understanding that the truce was over and I was fair game again. It wasn’t personal, someone had to be on the bottom rung. Half the kids who tormented me only did it to make sure it wasn’t going to be them. The same dynamic happened for me in theatre, where for the duration of the play I was a valued part of a team. Once it was over I would be distraught, because my membership died with the play, and the brutal reality of my lonely life would once again return.

The problem here isn’t the bully or the behaviour of the victim, it is a group dynamic that treats some kids as more important than others, more worthy of protection, more powerful and privileged, and those at the bottom of that as fair game because they brought it on themselves. In some classrooms, those with power – kids with a lot of influence, or insightful teachers, influence this dynamic and make it safer to be unpopular and disliked or in conflict with the popular people. In other classes – like mine, there’s a dark undercurrent of abuse, violence, mental illness, pain, alienation, and rage, and these things are expressed through a brutal social dynamic that leaves every student afraid of winding up as the target.

My empathy with my bullies made life hard for me. It’s difficult to tear a kid to shreds when you know s/he’s only making your life miserable because s/he’s in terrible pain. It is also made life difficult for me because I hated that I purchased my freedom from being bullied at the cost of having to be a bystander to the abuse of another kid. I could have gone through school with a lot less bullying, and a lot more inclusion, but the cost to my own values and beliefs was always higher than I was willing to pay. Everytime I got off the bottom rung I found myself allying with the next kid on it. I never developed enough social power to change the dynamic itself.

I remember once at about 15, confronting a boy who had bullied me terribly as a kid. I was struggling tremendously at the time, and in a difficult twist of events my drama group were doing a play that included a nazi youth betraying and abusing someone. This boy had been cast in the role of the abuser. Week after week of rehearsals, I sat and watched my bully torment another person. It was a powerful trigger and turned what had been my haven into a nightmare of hyper-vigilance and flashbacks I was trying desperately to conceal. One day I went to drink from a water fountain and he came up behind me and leaned in to drink from the one next to me. I hadn’t realised he was near and flinched back. He looked at me with derision and asked why I always did that around him. The world paused for a moment.

I decided to call him out. I unfocused my gaze so that I could look him in the face without seeing him, and told him that when we were younger he used to bully me a lot. I was expecting contempt or denial. What I got confused me.

He looked suddenly deeply sad and alone. It was like I could see a child in him drop his head, turn away, and walk off down a long corridor. He said to me “You have no idea how many kids have told me that. I don’t remember any of it.” And then he walked away. I don’t recall ever speaking with him again. This is a kid who I still sometimes have nightmares about.

Those are not too uncomfortable stories to tell, they make me sound like a victim or a hero. I played that role at times in other’s lives, but I also hurt people. I made choices I now regret, I was not honest with people, I used the little power that I did have in ways that excluded and hurt others. Most of us have power somewhere in our lives. We work out our rage or our demons from the places we don’t have it in the areas we do have it. I’m still trying to make sense of this.

When I was 14 I allied with a girl I’ll call Alison who was being bullied by her group of friends. She paid a high price for inclusion in their group, she was often run down, criticised, and her job was basically to fetch and carry. I was angry about this and she and I disconnected from them to hang out with each other. I then went through hell with a classmate who fell in ‘love’ with me, and tangled me into his suicidal distress. My capacity to empathise with him touched profound unmet needs to be heard and feel connected. He became obsessive and dangerous. At the end of a six month ordeal I was left with PTSD and total confusion about what just happened and why.

Alison had her own demons, and instead of finding comfort in our friendship she became a burden. She didn’t understand the PTSD, and neither did I. She couldn’t understand my new terror of touch, my sense of disconnection, the simmering rage that lay waiting beneath an apathy so heavy I didn’t care if I died. Her efforts to connect exhausted and triggered me. One day she covered my whole desk in tiny sickeningly cute stickers of teddy bears while I was away. I often had belongings defaced or stolen by my bullies. I was furious, and choked it down to ask her not to touch my stuff.  She didn’t understand. I couldn’t explain. I had run out of capacity to cope with things that didn’t used to matter so much, like being traded in at lunch time if someone more interesting was happy to include her. Our friendship had never been strong enough or close enough to have those conversations, and when I had been in a better place I could afford more generosity for the times she hurt me. I didn’t tell her about any of this, I just retreated. I pushed her completely out of my life over a 6 month period and justified it on the basis that she had always been hard work and I no longer had the energy. She was devastated. Her every effort to reconnect was rebuffed. I took her away from her original friends, made her feel safe and cared about, then dumped her alone. She was vulnerable and bullied and left with no idea of what just happened. I was not a hero in her story. I work very hard in my friendships now, to find ways to be both honest and warm. I fail. I try again.

We can turn empathy off when it no longer suits us in ways that are frightening. It is hard to acknowledge the times we have done that, because it put us in a place where have to see our own role as something we have no respect for. It’s hard to face our own limitations and flaws, and even harder to face them and still find sense of love and self-acceptance. Empathy can also be dangerous. It’s kept me in relationships where I was being hurt, because I struggled to wrap my brain around a crucial idea: that being able to understand someone’s behaviour is not a reason to put up with it. (See Stalking the Soul: Emotional Abuse and the Erosion of Identity) Over-empathising with someone in a position of power who lacks empathy for you is extremely dangerous. Empathy has cost me my peace and my chance to slip unnoticed through high school while other kids suffered, but it’s also protected my sense of identity and values. It’s a way I connect with other people, but it also alienates me from them when I empathise with someone I’m not supposed to.

Power scares me senseless. One of the things I have learned about it is that very often, we don’t notice when we have it. We don’t FEEL powerful. We are acutely and painfully aware of every area of life where it is absent and yet often oblivious to the places we do have it. We repeat learned dynamics, and set up new relationships on the same principles as the old, with merely a shuffle in what role we now play. We demand responsibility and empathy from those who have power over us, but are frequently unaware and uncaring of the way we use our own power. We want to be understood and loved, but often there are people we wish to draw a line around and say I do not want to have to understand or love them.

Peer workers are constantly being co-opted into the role of staff, pressured to choose a primary allegiance to the organisation that employs them. With the need for work, we are in an impossibly vulnerable position, carrying the weight of the need to be or provide a voice for all the other dis-empowered people, and trying to unite two groups of people who are often hopelessly incapable of having empathy for each other. When groups are full of fear or pain, they do not allow their members to be dual citizens, and they demand a loyalty to their own members that prohibits the capacity for empathy for the other – whether the ‘other’ is a terrorist, a bully, or a victim. We see and rightly decry this process when the alienated other is someone vulnerable, but we justify it when the other is someone we need to believe we share nothing in common with.

This empathy has written me out of my plans to get a job in mental health. There are amazing people working in it, people who have found a capacity within themselves to recognise the limits of their power, and to let go of what they cannot change. I have not. I am afraid of power and what it does to someone who wields it without reflection. I am afraid of the temptation of money and group belonging and security. I am afraid of the slow erosion of values. I do not trust myself to walk that path with wisdom, only with profound regret. I cannot stop empathising, at any point, with the person in the room with the least voice and power, and it kills me. Especially when they are angry with me, disappointed in me, or critiquing my services. I find myself split between my own perspective and theirs in a way that tears my head apart. I often find myself the only person working to see more than one perspective and find a way to unite them. I still have almost no capacity to see the limits of my own reach and accept them. Being required to be a bystander to things I find unjust makes me want to burn down buildings and run screaming into the night. I don’t cope well with systems, even those I build myself.

I don’t have answers for this. My path forwards is to always do my best to live with love. I believe that empathy is crucial, not only for those who are hurt, but those who are hurting others. Not to condone or minimize, but to face the world as it is, and the potential for darkness in others and ourselves. We can empathise with people and still utterly denounce their actions and hold them accountable. Sometimes following our instincts protects us from our own darkness, sometimes we find ourselves doing harm and don’t know how we got there. Empathy is part of understanding that, making some sense of what happened in those who now lack it, and how to strengthen it in ourselves and our communities. When we empathise with an ‘other’ we stretch ourselves over no man’s land to do so. In a war, this means our guts are ripped up by barbed wire, and we risk both groups tossing us into the no mans land. When it’s to a ‘monster’, we must face the disturbing reality of our own vulnerability to losing what makes us human, and we risk the rest of the world thinking of and treating us as one of the monsters.

“I got death threats. My twitter feed exploded with more than 5,000 tweets from strangers telling me I was a un-american monster for “sympathizing with a terrorist”. People wrote comments on my blog about how I should have my own legs blown off.”

via i was just answering a bunch of questions for a… – AMANDAPALMER.TUMBLR.COM.

In our friendships, empathy inspires a level of courage to be both loving and warm in ways that power confuses and trauma overwhelms. It is very easy to let myself off the hook for hurting Alison, and yet to be deeply wounded and angry at friends who have done this to me. I keep coming back to the same ideas – that it is difficult to remain fully human. That the act of living alters and erodes identity. That love can fill our lives to the brim, and also cost us everything. That love is essential but insufficient. That the alienated are also alienating.

We think we are kind, when we are only happy

CS Lewis

There are only two motives,
two procedures, two frameworks,
two results.
Love and fear.
Love and fear.

Michael Leunig

Into Art

I’m writing from the SA Writers centre, where I’m attending an all day workshop about how to work with communities as a writer. I’m glad I came, despite my horrible lack of sleep and sense of total emotional exhaustion. It’s interesting to reflect on groups and dynamics as an artist rather than a peer worker. Always learning.

This week was incredibly difficult. Amanda’s funeral was beautiful and draining. I’ve had a bunch of big, emotional conversations with various people over the week. Bridges has been in a very painful place. I’ve worked hard this week. I’ve drained my capacity to the point where I’m shaking with exhaustion and feel like I’m going to throw up. Finally, now that it’s Saturday, I don’t have to be okay. I don’t have to be a peer worker, don’t have to make sense of anything, don’t have to be responsible for anything except my own head space.

I woke up this morning drowning in self loathing. Deep in the pit, a place I retreat to when the only way I can feel safe is to try to hate myself more than anyone else possibly can. Shutting myself down from blogging, from reaching out to my networks on Facebook, because I’m afraid of any of the people I’ve shared a crisis space this week reading themselves into my words, being hurt or angry, of undoing all the effort I’ve put into reaching out and building connections. Trapped in a space where I can’t speak, can’t connect, and cannot myself be deeply wounded.

Today I could have stayed home, tried to rest, and collapsed deeper into the pit. Instead I found Nine Inch Nails and the brutal liberation of being only my own person, the freedom of being allowed to be a little bit brilliant and a lot messed up.

So, on goes the blue lipstick today. Today I’m an artist. Don’t follow me anywhere. Don’t listen to me. Don’t look up to me. Don’t need anything from me. I don’t speak for anyone else. I don’t have answers. I have rage, passion, joy, insight, longing. All I promise is to be real.

Can I finally breathe again?

Honey, like this, I can fly.

Boat over black waters

I sail my little boat over black waters at the moment. Old wounds in me suppurate, old rage is fresh again. I find myself grappling with new questions – how to be wounded in community? Where do I take this pain? If I hide it all I build a wall between my heart and the people I love. I live alone with it, in a cold place where love does not reach me. If I share it all, I spread it, like a disease. There’s so much loss in the lives of those I love, so many bad stories waiting in the shadows. I want to bring love, not fall like dominoes. I find myself tangled in dilemmas of ethics and honesty and respect. I know how to grieve, and I know how to suffer alone. I don’t know how to place my friendships. There’s a terror and a brutal loneliness in psychosis for me that hasn’t entirely gone. There’s gaps between my friends who grieve Amanda and those who didn’t know her I’m struggling to connect. I find myself struggling to move between sarah-in-community and sarah-alone, between the peer worker and the friend, one who offers and one who likewise needs.

Last night Rose visited. We were both fragile, we arranged; no heavy conversations, no reaching into that pain. Just companionship. Like boats rocking over black water, we knew but did not need to speak of it. I found poems to read her to sleep. She stroked my back, touch grounding me, writing me back into being. We were careful with each other’s brokenness, held our limitations gently in our hands.

There was no screaming spiral of pain that sings to pain, destruction unknitting all that we are, souls seared by scars. There was tenderness, acceptance, closeness. We didn’t ask of each other more than we could give. Somehow, instead of loneliness, there was love. There was love.

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Waves of sadness

Tired now. Amanda’s funeral is Thursday. Last night I didn’t sleep at all. Got a few hours today after going to bed at 9am. Fragile and hurting, overwhelmed by waves of sadness. Today I can’t be the diplomat, can’t bridge the gap between myself and others, think through their perspective and mine and find a way to connect them. I do this a lot. Some days I’m just too exhausted.

Lay in bed last night with someone inside me begging to be allowed to self harm. Intense and distraught. Self care become alien, painful even, unsettling, impossible. It takes all day to talk myself into breakfast, having a shower.

Woke up tangled in grief and anger and frustration and called lifeline instead of venting on friends or in any public spaces. Struggling to navigate pain and vulnerability in the context of a community. Are we not all on some level alone with our pain? It’s not easy to face our limitations. I’m under no illusions that if Amanda had only reached out to me, she’d have been okay. What then do I believe?

Some days it feels to me that how I manage my pain alone at 3am is then brought before my world at 10am for judgement. We can’t always be there for each other. (and yet we say it, we need to believe it, need to extend hands of friendship over the chasm and hope they will never lean on it too much for us to bear) Trying to understand the chill in my heart, the way my bones grow cold. Is it me, or them, or all of us? I hate myself. I can’t let love in, but indifference and disdain I eat off the floor. I’m lost. Trying not to need, not to lean, not to bleed out, not to disconnect, lash out, break everything apart, walk away from it all.

I’ll find a way through, but tonight I’m lost.