Today is a sad and special day; Pregnancy and Infant Loss Remembrance Day. This affects so many people and yet is so often a solitary, unrecognised loss. These are the people who are often invisible and in pain during celebrations such as Mother’s and Father’s day. Rose has experienced this loss, so it’s something very meaningful to us as a couple. Little rituals like this can bring a most private pain out of silence and into public awareness, can give an opportunity for people who often have no graves to visit, no family awareness of their sorrow, sometimes not even names for souls they have deeply loved. Tonight we light a candle in remembrance of the ones we lose, and with compassion for those who grieve.
7 weeks ago I had my first adult experience of psychosis. I was extremely fortunate in that I knew what was going on, and was able to find enough strategies to manage it that it passed comparatively quickly. For the next several weeks I felt very vulnerable, on the edge of that place. I felt dissociated, and mildly paranoid. I had a strong feeling of being watched at all times, or of having someone behind me. At times it was stronger than that, the sense that I was standing on the lip of a hole in the fabric of the world. I was looking at reality, but just behind me was a tear into the void, dark and cold and terrifyingly inhabited. I could feel a cold wind on my shoulders.
I was still in a highly sensitive place, where certain things would speak to me in a way I wouldn’t usually experience. At a party a few nights later, a song comes on that has a guttural male voice singing and it’s like that moment in films where the background suddenly seems to zoom into the foreground without displacing it. The sound of the deep voice is reverberating in my body and making my hair stand on end. I go outside where I can’t hear it well. My hair settles back against my skin.
For the first few days I stay in the light, keep all the houselights on all day and night, and do not leave the house after dark. I do not drive, I do not work, I’m just patient. I test how things are developing gently, try turning out a light and wait to see if the hallucinations return. I find that I exist in a twilight state for a few weeks were the dark is mostly empty, but sometimes starting to fill with hallucinations. Being driven home by Rose, I’m watching the sky curiously as night falls, relieved when it’s empty, cautious when things move within it.
A few nights after the episode I’m lying in bed, talking on the phone, and the conversation is becoming increasingly stressful as Rose and I don’t see eye to eye or understand each other. I feel a sense of a charge rising in my body. It reaches mass and my sense of self suddenly dissolves, like a drop of oil onto a vast surface of water. I have no sense of my body, of gravity, of weight. I have no sense of being the right way up or even what way that is. I feel vastly infinite and utterly tiny at the same time. There is a consciousness at the center of a galaxy of stars like dust. I am falling in every direction at the same time. I close my eyes, knowing that I am still only a woman, still lying in bed, speaking on the phone, having an argument with my love. We keep talking. We find a place of connection and common ground. I feel myself come back together, like big bang in reverse, silent and without violence, all the stars gather back into my skin.
Gradually it eases, this sense of being suddenly skinless, on the edge of this world and another one. I’m so fortunate. How many people even know what psychosis is when they have their first experience of it? More than that – know what might help, know that it’s temporary, know that I can survive it? I re read a book I own called Unshrinking Psychosis by John Watkins. I recommend it for anyone seeking to better understand psychosis. Two ideas stand out to me – that there is method and meaning even in madness, and that not all psychosis is a breakdown. Some is a messy restructuring of the mind, a transformative process. Not breakdown but breakthrough. Not indicative of problems or stress or failure, but of growth, process, recovery. This resonates with me.
I also reached out to a mentor who has also experienced psychosis and we went out for coffee. The chance to talk with someone else who has been there – and come through it, sans lifelong complications, diagnosis, medications, and stigma, is such a relief. I ask one question in particular – “I felt so lonely in that experience, was it like that for you?” They tell me – “Lonely is not a strong enough word for the feeling of profound aloneness and alienation.” Yes. That’s how it was for me. They remind me – crisis is nothing more than the interruption of a pattern. For good or for bad.
There are things I understand better now. I understand the tremendous distress of people who’s sense of reality has collapsed when we try to tell them the things they perceive are not real in an attempt to comfort them. This is not reassuring. We are trapped between our psychotic perceptions (which may be terrifying, or not) and an awareness that we are going mad, which is absolutely terrifying. Knowing that the experiences are not real does not stop them happening to us. It’s like being trapped in a nightmare from which you cannot wake. Knowing it is not real does not stop the fear or the horror, in fact the sense of disconnection from everyone else, from the ‘waking world’, to push the metaphor, is terrifying. And we don’t know if we will wake up. So we cannot come to harm physically unless we act upon the psychosis – when the terror was so intense that my skin was literally rippling across my body, the effort it took to stay still and not run – blind with terror, through any obstacle and into any terrain, took everything I had. Even if ‘it’s not real’ means I can’t come to direct physical harm, I can certainly suffer psychological trauma. ‘It’s not real’ reminds me of the dissociative process of a child being sexually abused – not physically harmed, but violated and traumatised, who thinks to themselves ‘If I pretend this isn’t happening it cannot hurt me’. We know that’s not the case, that these experiences impact and change us even if we deny them. The experience of psychosis impacts, changes, and even traumatises us, even if ‘it’s not real’, because experiences that invoke terror, horror, helplessness, and isolation always have the potential to be deeply traumatising. The emphasis on it’s not real, don’t acknowledge it, the focus on getting over it and back to life, sealing off the experience as quickly and completely as possible seems like a highly dissociative process to me.
And there lies a dichotomy in my experience. It was not real, and yet it was real to me. More than that, it had a sense of profound significance and meaning that I am still gently examining. There was a sense for me of the indelibly familiar about an experience that was at the same time, utterly alien and new. Talking with my support people I drew upon many seemingly disconnected threads of my life that all had some link to this experience. I remembered my vivid imagination as a child where I could perceive things that other people did not – particularly at night. Foxes that ran up and down our hallway, soft footfalls on carpet and the brush of coarse fur against my legs, but not the musk of the real animal. The shadows that congregated in our lounge room every night, tall as adults, having meetings, talking among themselves in a murmur of voices that was the soundtrack to all my childhood nights. If disturbed, they would rush as one furious mass to wreak some unnamed horrifying punishment on any child out of bed. Some nights having crept out for a drink of milk I would be trapped in the triangle of light that spilled from the open fridge, waiting for dawn to come so the shadows (which could not move into the light) would go dormant. (waiting for the dawn to come – so many sleepless nights where only dawn soothes me to rest even now) My wild imagination made me stand out as a child, but not so much that I would have received any kind of psychotic diagnosis. I was different but not that different. I wonder sometimes if all children are naturally psychotic – and yet aware of the divide between the real and ‘not real’ that they perceive: imaginary friends, ‘pet tigers’, games. Somehow we lose this with age.
Another link; making connections with younger parts in my system (I have DID) has been a frightening and fascinating process. It has been hard for those of us who are older to permit our inner kids to have time out in our body. For some of us, it’s painful to be misunderstood as being childish. For others, it’s frightening how vulnerable inner children can be, and how lonely it can be to be a child in an adult body. A few months ago a very young part came out to play with a my little pony toy. They ‘flew’ the toy around the room. We were co-conscious for the play. What was absolutely startling was the physical response in our body. It reacted as if we were flying. Muscles tensed and relaxed, electric sensations feathered across skin, with the highs and lows of the flight the stomach flipped like we were in a car going fast into dips and rises on a road. When the adults switched back out, they were blown away to have this glimpse of a child’s world again. Children, or least, my inner children, have an intense empathic bond with toys that allows them to experience what the toy does. It’s outside of anything I have felt as an adult. No wonder children can play for so many hours. No wonder I struggled to not lose this ability myself as a child, playing games with younger and younger children as my peers lost interest in imaginative play.
A few months ago I was playing a game with friends that relies on imagination. Called Beyond Balderdash, you have to quickly invent plausible definitions of words and other cues. I find these quite challenging, not least because being a creative person, I’m expected to be very good at games like this and the pressure interferes with my thinking. For the first couple of questions I wrestled with my brain, trying to come up with original ideas and mostly drawing a blank. The struggle was fruitless, like trying to use a hammer to thread a needle. Then I felt a shift inside me, something wrestling with me and wanting me to get out of the way. I relaxed and let the process unfold. I stopped shaking my brain in frustration, trying to squeeze a creative answer out of it. Suddenly ideas came out of nowhere, easy as reading off notes someone else was handing to me. There was no struggle. My imagination just spoke. I thrashed everyone else at the game, and went to bed that night feeling thoughtful and a bit confused. It almost felt like cheating, the way Eleanor Longden describes her voices giving her the answers to an exam and wondering if that was cheating.
In my arts practice I’ve also been experimenting with something curious. When I’m doing something like painting, for me it’s a very intellectual process of calling to mind the shapes and colours I want to create and then doing my best to get my hand to make them. I’ve noticed at times that while doing this, I can ‘see’ an image on the canvas (or paper, or skin) that I’m painting on. It’s not really there and I know that, but I can still see a faint ghost image of what I’m trying to create. And it’s often different from what was in my head – maybe only in a small way, such as the placement of an eye, but it is different. So sometimes I ignore what I was trying to paint and I paint the image I see instead. Again, it feels oddly like cheating. The strange thing is, it’s surprisingly effortless, and it almost always looks better than what I had been going to do.
I think about sculpturers describing their process as being seeing what is in the stone and setting it free, rather than turning the stone into something. Rather than a quaint turn of phrase, this concept now startles me.
Nightmares that have been so deep, involving, and horrifying that my sleep became a place where I was helpless and tortured. And yet, a sense that in them in something powerful and important that I would be at great loss without. Memories of being so afraid of the dark as a child and young person that there was a sense of being on the edge of running, and that if I ever allowed fear to overwhelm me and started to run there would be no stopping and no safety ever again. An incident as a young person where I briefly hallucinated a nightmare figure when trying to confront my fear of the dark and had a panic attack. The experience of sensory dissociation and trauma so profound that I craved touch to ground me back into my body and sense of self. My desperation to experience psychosis as a highly traumatised young person who could not escape the daily pain of things like chronic bullying and alienation at school. And yet, curiously, I failed, and at the time, reality remained immutable.
Separate and yet connected experiences. Many of them, like threads all leading to a complex tapestry I now seek to understand.
I understand now the rage I felt in some people at the last Hearing Voices conference I attended. At the time I recoiled from it, wanting to walk a gentler path of diplomacy and peacemaking. But, sitting in my bedroom wracked with terror, on the edge of needing crisis support and knowing how profoundly traumatic that ‘support’ would likely be, I felt the terror and fury of someone marked for abuse and helpless to prevent it. The sense of safety of being at the edge of conversations about appropriate supports and responses to psychosis was stripped away. I was no longer a ‘voice of reason’ on the sidelines. I was now naked and vulnerable and under the microscope. The knowledge that simply being honest about my experiences could see my most basic rights taken away from me in the name of protecting me, could see me drugged and locked away, trapped and confined, subjected to solitary confinement, forced into therapy with people who use entirely different frameworks from me, horrified me. The instinct for self preservation said – silence. Secrecy. Be small, quiet, hidden, and run a long way away from the places where people like you are kept under guard, sedated, tied to the bed, given intense directives and advice by every nurse, doctor, and shrink, most of which is contradictory. So instead, I blogged.
I should be able to call a place like ACIS and tell them about my drug allergies and DID and trauma history and explain that I need a quiet place to rest for a few days and just enough sedatives to help me sleep without sending me into liver failure. The liklihood is that I would be abused and ignored as a faker, or committed, dosed on meds I cannot tolerate, and then find myself trapped in hospital in a spiral of drug induced psychosis and forced ‘treatment’. A system that is both over and under responsive to crisis, that has ‘entry and exit’ problems – it’s hard to get into the system and get help, and also hard to get out again. There’s rage in me that this is the ‘help’ available to me – high risk, and likely as traumatic as it is helpful. What I need is Soteria, a place of safety and respect, where people who are neither afraid of me or my experiences hold my hand while I rest, find my feet again, make sense of things, return to my life.
There’s not just chaos and loss here. Psychosis has been like being tipped up into my own subconscious, filled with wonder and stuffed with nightmares that breed in the dark. I refuse to live in fear of my own mind. There’s powerful things here, about life and love and art. If the alternative is the loss of those things, is the ‘flatland’ of a life that does not move me, of art that is forever the imposition of my will upon things around me, instead of a conversation with my own shadow, then I’ll risk a little madness.
When I was a child, my Mother believed fantasy and imagination were powerful and important. Creativity is essential to life. One of her friends believed they were dangerous. Her children were not permitted to watch the films we watched, or to read the books we read. Their play was shaped in ways mine was not. I wondered, after this experience, if they were right. Has being exposed to fantasy made me more vulnerable to losing my grasp on reality? Or has it left me better equipped to navigate my own inner world?
In the hearing voices group I’m involved in here in SA we often talk about our inner reality. Instead of conversations about reality and delusions, we talk about the shared reality and the inner reality. What I experience in psychosis isn’t real. But it is real. It is my reality, drawn from my mind and my life. Full of the promise of connection and art and a deeply felt life, as well as nightmares and terror. Of embracing child parts and making sense of trauma and facing my demons.
I’m back on my feet at the moment. The dark is empty, I can walk through life without music or images speaking into my heart and calling up a flood. I’m scared, and angry, and aware of a new gap between me and people who don’t experience this, and another reason I am vulnerable to stigma and ignorance. I’m also thankful, thoughtful, listening to the world with one ear cocked towards that void. I will go where my heart wills and seek the deep truths of the soul. Fray into stars and become a person again.
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.
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.”
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 LewisThere are only two motives,
two procedures, two frameworks,
Love and fear.
Love and fear.
I wrote this yesterday, after driving home from a full, wonderful day of Tafe, excitement, and visits with friends. I often crash and become depressed at the end of days like this, this time a conversation happened inside on the drive home and a different part came out instead.
Home, through rain and night, after a day
Bright with people, the suns of their hearts, warm company
My house aches ahead on the road, cold and empty
And I feel the chill in my chest
Heart constricting, streetlamps
Pierce me with white knives
Rain falls like swords, and on the road
Black water pools like mirrors and
the night gathers close around me.I’m afraid
To be alone
I’ll catch you falling
it’s also beautiful
why does the light have to go?
because this is where the art lives
I love the people, their voices, my voice
I know. I love the silence, the strength in solitude. We walk both worlds.
Will I come back?
am I loved?
let go, and the fear will ease
burrow down in my heart,
this dance is mine.
See more like this:
From my journal, 2011
And you want to know
about the things we don’t speak of
only the mad ones go
that world is an island
we always walk alone
there is no speaking of it
who am I to break the silence?
to admit to agony
to betray my loneliness
if I only could
I would take you there
I would meet you there
where the light is orange
and the shadows breathe
if I only could
I would walk those streets forever
and you would hear my song
come in through the windows
closed against the night
you would meet me here
and there would be no words
or need for words
in that night there is only
the language of tears
and of touch.
Some of us find ourselves in a place where we are deeply isolated in our lives. This is sadly a common problem for many people with ongoing mental health problems. Social support is one of the factors that help to build our resilience – our ability to handle difficulties. Isolation has been a major problem for me most of my life, and in my opinion certainly contributed in a big way to the mental health problems I was suffering as a young child. There are many different things that can contribute to becoming isolated, which can change the kind of approach you may find most effective in overcoming it. In my case, some of the things behind my isolation were very simple ones – such as being a creative arty person in a small school with a strong sports focus. Others were compounding issues such as developing PTSD in my teens and finding my peer group weren’t able to support me – their withdrawal distinctly increased my symptoms and distress which only made me more different and awkward and therefore more isolated. This kind of spiral – the experience of mental illness and/or trauma makes you behave differently and need different things, which can lead to your social support withdrawing, which can make the illness and distress worse – is a common one for many people. In addition, withdrawal from social contact is a pretty common symptom in many mental illnesses, so your social network can fall apart or move on while you’re hunkered down in a burrow somewhere. When you start to feel better and look around, it’s a bit like Rip Van Winkle coming home to find the whole world changed and his children grown. But too, for a lot of us isolation is part of the landscape in which vulnerability to trauma and mental illness is then grown.
I’ve rebuilt my life on more than occasion only to have it all burn again, and I’ve learned a few things from mistakes I’ve made over the years. Maybe some of these will be helpful to you.
- Sometimes you have to leave. I could bend myself into pretzel shapes trying to make friends at school, but really what I needed is to look elsewhere. There’s a few reasons for this – one of which is that having been targeted by bullies, even students who liked me were afraid of also being bullied if they spent time with me. But that’s another story! It would have been better for me to have been home-schooled and looked for mates in after school drama classes and activities like that.
- Borrowing the social network of a friend or romantic interest. It’s nice to be invited out and have people to hang around with. But if things go pear shaped you’ll be left picking yourself up on your own. Some of the energy you’ve invested into those relationships could have been spent making mates of your own.
- Putting up with very unequal relationships. It can get tempting to take what you can get and accept some miserable relationships when it seems that nothing else is on offer. I don’t mean never care about anyone else, or don’t be kind to your elderly stroppy neighbour. I mean taking on someone and treating them like your best friend when that’s really not what they are. Confiding personal information that is later used for gossip, nursing them through heartbreak when they never show on your bad days, always paying for the night out when they could afford to shout it now and then.
- Expecting more of your mates than they’ve got. When I was a teenager dealing with PTSD my mates at the time freaked out and distanced themselves. That was really painful and unhelpful, but I do get that a bunch of 15 year olds really weren’t equipped or supported to know how to relate to me. They had no idea why I was so reactive and overloaded, and frankly if I’d been given good support from other adults they might have had a model to emulate. Most of us don’t have friends who are deeply educated and experienced in mental health and trauma sensitivity. They are going to get it wrong. (frankly, even if they have loads of information and experience they will still get it wrong! That’s just the nature of being human I’m afraid) I use a lovely quote by Barbara Kingsolver as my own guide:
The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away
We all need contact with other people to maintain mental health. There may be different quantities for different people – some of us need more social contact than others. We also need a range of different kinds of relationships in our lives, from the barest acquaintances to the closest of kindred spirits. Sometimes we may be better at maintaining one kind of relationship than others. Some of us have a couple of really close mates but almost no one else in our lives. It doesn’t matter how awesome the friend is, you still need other layers in your life. Others of us maintain a healthy bunch of friends we see now and then, but never seem to find anyone really close. Some of us find ourselves in a pretty bleak space where we don’t really have anyone.
I started rebuilding my own networks from the outside in. That is, I started looking for acquaintances and people I might hang out with occasionally before I went looking for closer friends. There’s less being asked of someone at this level, so a lot more people will make great acquaintances. A few years back I started going to Mifsa (Mental Illness Fellowship of SA) looking for company. When I first walked in to the activity centre and looked around, I was really disappointed. No one else there seemed to be like me at all. Many of the other people openly asked what I was diagnosed with when they first met me, which I found really confronting. I was at the time very closeted about my mental illnesses and I refused to disclose. On one occasion another participant took this as a challenge and told me they’d be watching me to work out what I had! This wasn’t a great start and I stopped going.
Then it occurred to me that there could have been a whole stream of people like me, with my interests or similar experiences coming through the activity centre over the years – but until one of us stayed put we were never going to meet each other. So I decided to keep going anyway. It helped to have somewhere, however imperfect. Access to resources such as the internet, landline phone, cheap meals and food bank helped get me through some really tough times. And although I wasn’t close to most of the other people there, they were company, someone to play pool with or watch a movie with. Just that basic friendliness meet a need for me.
Sound Minds (Voice Hearers Group) was a real turning point for me. Again, initially it was less than ideal. I was the only person there with a dissociative diagnosis, and at that time Mifsa had no books, fact sheets, experience or resources of any kind geared to dissociation. I had to explain myself a lot and I was very stressed and sensitive about my diagnosis. But I was accepted, and they let me come and be upset about my life without telling me I should look on the bright side. Out of this the Dissociative Initiative was born and now things are changing. Sound Minds was also originally geared towards education. The first time I went along and shared that I was lonely, the room went quiet. Several other people then shared that they were lonely too, and it was just something to get used to. I went home and decided that a room full of lonely people was daft. Gradually the group became more social, and now I have the whole bunch round to my place for a camp fire catch up regularly.
I’ve started to build networks through the mental health community by turning up to lots of events and being friendly and talking with other people. I’m starting to get to know people. I also want to make connections through different networks – which is part of the motivation for the mad amount of study I do in different areas. But I started much smaller – by looking in places where I had interests (such as art) or felt accepted despite challenges (walking into a building marked “Mental Illness Fellowship”).
I have also found online communities at times to be very supportive. Facebook helps keep me in touch with people I don’t get to see often or those I don’t know well enough to give my details to. Skype keeps me linked in to people a long way away. Some nights just being able to find someone else awake and have a quick chat even if about nothing personal has helped take the edge off. I’ve been part of online groups through Yahoo which helped me to understand a lot more about my mental health and have other people to talk to.
For relationships that have been intense and distant, as in the instance of some family members, I’ve read about relationships under stress and learned about boundaries, polarising, and other common issues. I’ve worked on lowering the intensity and reactivity in these relationships, resetting back to friendly acquaintance if I can and re-growing things gently. I’ve also done a lot of work on myself, accepting myself, learning assertiveness, better communication, and how to better contain the kinds of symptoms that cause me problems in my relationships – such as raw emotional intensity, impatience, ambivalence, emotional disconnection and preoccupation, irritability, and… you get the picture. I’ve had to do a lot of building a better relationship with myself instead of trying to resolve emotional pain through company. Having said that, I’ve been quite stunned at the incredible difference having some emotional and social support has made for me. A lot of that emotional reactivity and instability have settled by themselves. It is too damn hard to do this all by yourself.
I’ve had to let go of some relationships that were really important to me because they weren’t working and sometimes I am just too fragile to handle it. I’ve also had to learn how to accept a relationship that isn’t quite what I wanted or that changes over time. Sometimes you end up in a relationship where you are treating the other person as a best friend and they are treating you as an acquaintance – so you do a lot more nurturing and being involved then they do. It’s been a hard lesson to learn that sometimes if that’s the level of relationship they want or are comfortable with, that’s what it needs to be. Very close friends take time and energy to maintain, and there’s only room for so many in our lives sadly. Sometimes you think someone is awesome but so do a few other folks and they’ve already got their complement of close mates. It’s okay, keep looking, if you’re a good friend and you let things develop at a good gentle pace, you’ll make them.