I am doing a massive clean and sort of our home and belongings to make room for our little Frog who could come at any time now. Today I stumbled across this old artwork, made in about 2002 and exhibited at a psychiatric conference through my involvement in the Amigos program with Second Story. It pre-dates my diagnosis of DID by about 5 years, in fact I’d not even heard of the condition at this time. And yet to me it captures so well some of that lonely, fractured experience.
There’s a lot of new terms to learn when you’re engaging the wonderful world of multiplicity, because in some ways multiples function very differently. Some of these terms are clinical, which basically means invented by shrinks and doctors, and some have come into use through books and autobiographies written by multiples. One of the trickiest aspects of language is that it is not fixed – shades of meaning evolve over time. With a fairly ‘new’ lexicon like that around multiplicity, this is even more the case, and as admin of a large online group, I’m constantly surprised by the new terms or new meanings ascribed to terms I come across. Most people have a fairly idiosyncratic take on language and it’s often helpful to double check what they mean when they use a certain word. Having said that, there’s also value in having dictionaries of definitions to help us communicate with each other, particularly for those who are new to the topic and can feel bewildered by the terms being thrown around. For more common terms and discussion about language see Language, definitions, and common terms over at the DI.
Co-fronting or co-hosting refers to a process where more than one part is out, inhabiting the body at the same time. I’ve personally experienced this, the first time I was aware of it, it was a very strange moment. A sense of shared space slowly dawned on me, and with the awareness came a sense of something precariously balanced that would quickly collapse if I thought about it too much or had too strong a reaction to it. “I” was talking to someone who was struggling with a difficult situation. That tends to be my area, I have the counselling/listening skills and inclination. So the face, the voice, the mouth, the eye contact were all mine as I interacted with this person. However, we were also making dinner at the time. Someone else was doing that – moving hands to chop vegetables, borrowing eyes to read the recipe and use a knife and stove safely. We coexisted for about 20 minutes and then one of us went inside and the other took over completely. It was startling and surprisingly graceful.
I’ve had other experiences such as having an adult out while a distressed child takes over the hands to scratch at raw skin, or being able to soothe that child by asking Rose to gently stroke our hands.
There’s a similar term that means something a little different – co-consciousness. That refers to more than one part being aware of what’s going on in the body/the outside world at the same time. The opposite process of co-consciousness is amnesia, where only the part who is out is creating memories of what they are doing. Everyone else in a system may be sleeping/unconscious, talking with each other, or doing other things in an internal world. They may or may not be aware time is passing. They may be fighting for control of the body, but they are not sharing it. Awareness without any control of the body can be helpful or frankly traumatising, depending on the circumstances. For more about this see What is co-consciousness?
Systems vary widely in their experiences of multiplicity, something I can never seem to say enough. For some parts, when they are not ‘out’ in the body they may have no awareness, or total co-consciousness. Some systems have never experienced co-fronting, while others do it all the time. It can be as simple as one part running the body and cleaning the house and another part quickly reaching out with a hand to snatch to safety an item of value that would otherwise wind up in the trash. To some extent, we all do things with our bodies that are outside of our awareness at times – body language is full of examples of this where our feelings or impulses are expressed through escape movements, muscle tension, micro-expressions, and subtle cues we are frightened, aroused, bored, or resentful. Consciousness, identity, and awareness are all complicated and interesting aspects of the human experience, and it’s certainly not just multiples who have experiences outside of their perception of control and volition – although the scale of those experiences can be much more confronting and intense.
To discuss co-fronting we are also getting into the territory of how switching between parts works for various systems. For some, switching is instantaneous as blinking, while others take a long time. (for more about switching, see Rapid switching) Some don’t so much co-front with two separate selves as blend between selves in ‘switches’ that can take hours or days to resolve to a single part. Some systems experience ‘blending’ or ‘merging’ where two or more parts come together for periods of time and function in a unified way before separating out again. This can be highly productive or sometimes totally the reverse – periods of blending or temporary integration can be times of chaos, dysfunction, confusion, and exhaustion. (for more about this, see What’s the deal with integration?) I know people with multiplicity at both ends of that spectrum – some for whom they are never stronger and clearer than when their A Team has got together, and others who are foggy to the point of barely coherent and shut down for days when their system gets stuck with more than one part blended. For some systems both outcomes are possible at different times or under different circumstances.
The topic of co-fronting raises interesting questions about how parts relate to the body. The multiplicity lingo tends to be borrowed from the old ideas of a ‘brain/body’ split where there is a difference between existing in the mind and inhabiting the body. It gets very interesting when you start to wonder about things like – where do parts come from, and where do they go when they are not ‘out’? How is conscious awareness different from bodily awareness? What are parts, exactly? I’m fascinated by the way we explore these ideas so little in the literature and make such sweeping declarations about how this all works. The reason these questions are so difficult to answer is that we don’t have the answers for non-multiples either. We don’t know how consciousness works, how self awareness and identity interact. How a single sense of self is created from a multitude of brain processes occurring simultaneously. How memory, emotion, and perception overlap and impact decision making processes. We have theories and observations and big gaps in our knowledge base. Every year we learn more and more about our brains, and every new bit of information challenges an existing idea in some way. As nice as certainty can be, it’s not really how science and knowledge work. In the meantime however, finding language to describe experiences and exploring how we are all similar and different is a powerful aspect of learning, connecting, growing, and living deeply.
If you’re a South Australian local and interested in mental health, this Friday April 29th is a free/gold coin donation film screening you’ll probably be interested in. All the details in the Hearing Voices Network of SA newsletter here.
First newsletter out in almost a year… Haven’t done one for the DI for the same amount of time. I miss my networks. I wish I could get paid for running them, and wish I had my little team of three to bounce ideas around with… as I’m getting back on my feet and having to pay for domain names being annually renewed and suchlike I’m starting to think more about what to do next and how to support these. Friends came over last night for the most wonderful campfire evening and it was so lovely… and made me miss being able to hang out with my local hearing voices group around a campfire without all the politics and crap about who is allowed to be friends with who… I deserve to be paid for my work, and I have the right to identify as I truly am and be friends with people from whichever category I wish.
I don’t know what the way forwards is yet, but I’m starting to be able to think about it again without being overwhelmed by a sense of failure, anger, pain and loss. Maybe that’s what the Waiting for You exhibition has done for me – given me a sense of having a place somewhere in the world. Maybe I was never meant to live in the world of mental health the way I was trying to build my career. Maybe there’s a home for me in art and a way to do this work that doesn’t exhaust and exploit me or force me to compromise my values. Maybe…
I don’t know. Nothing has worked so far. But I’m learning, through each loss and each dashed dream. I’m trying different approaches. I’ll unlock that door and crack it open a tiny bit, and back away quietly. Maybe some idea will come to me about how to grow these precious networks. Or maybe I’ll find some other, more sustainable way to make a difference in the world.
Here’s a fun paradox: as I’ve explored in this first post about criticism fatigue, as a mental health service provider and peer worker, criticism is risky to me, my job, and my organisation. It makes me feel stressed, threatened, and unsafe, and at times it is all of those things especially when it crosses the line into abuse. However, I feel quite the reverse about being able to make complaints. It’s very important to me that my right to criticise is respected and supported. I want to be able to make a complaint easily, without penalty, and to feel listened to, taken seriously, and even see change happen as a result. Being able to criticise limits the power of people and services to abuse and harm me – as a consumer, a carer, or a peer worker. Being able to criticise helps me be safer. But receiving criticism threatens that safety and wears me out. How do we manage that reality?
If I believe that consumers deserve to have a voice, which I do, then I believe that criticism must be part of the process of service provision. If I believe that staff deserve to be safe from abuses by consumers or other staff, which I do, then I believe that criticism must be part of service delivery. If criticism is so essential, maybe we need a better approach to it in services – something that makes it less threatening and less risky.
Let’s look at the bigger picture for a moment. Criticism can be conceptualised as a form of ‘feedback’. Feedback is the process of sending a message back after an action, to modify the next action. It’s a form of communication, and it is incredibly important to the functioning of all organisms, eco systems, and structures made up of smaller components. This is moving into the territory of systems theory, a fascinating field of study that explores the relationships between individuals/units/components within a larger system. The nature of feedback is that it creates regulation – it gives information about the effect of an action so that future actions can be modified to achieve the desired result. Without feedback, there is no regulation, and without regulation, function and survival are threatened.
In relationships between people, feedback is essential to connect and to pursue goals. Feedback in the many complex forms of signalling contentment, distress, praise, criticism, and so on all set the boundaries and define the power balance in the relationship. 2 way feedback means that these signals can be sent and received by both parties in both directions – person A can tell person B when they are comfortable or irritated or hurt, and person B can do likewise with person A.
In systems where this feedback is inhibited there are higher risks of problems. If a consumer can’t complain to or about a staff member, they are less likely to be consistently engaged with in ways that meet their needs and don’t hurt or frustrate them. If a staff member must not have complaints made about them/their services then they are under pressure to meet consumer needs without being able to clarify when their efforts are not effective, and without being able to take risks that may not work out – bearing unfair responsibility that presumes mind-reading and infallibility. If a staff member can’t complain about a consumer but the consumer can complain about the staff member – or vice versa, there is a significant power imbalance at play that can allow harm to happen to the more vulnerable party.
Criticism is also essential in a less personal sense – we need to criticise services, resources, ideas, ideologies, approaches, politics. In a similar way that feedback regulates relationships, it regulates ideas. It is not possible to create anything that is perfect, static, unchanging. The most elegant and beautiful idea can be misconstrued, misapplied, inappropriate in context, overcomplicated, oversimplified, accidentally destructive, and deliberately twisted to cause harm. It is not only appropriate but essential that we debate, discuss, and explore our ideas. In the case of services we need to hear from all people. It’s not good enough to say – well ‘most’ people find this approach helpful so we don’t have to listen to those who find it harmful. It’s not good enough to assume that good intentions will prevent harm. It’s not good enough to create highly risk averse structures to prevent criticism and then take the lack of criticism as a sign that all is well.
Criticism is part of learning. It is a signal that we have made a mistake, and propels us to greater understanding. As Bradbury colourfully put it in Fahrenheit 451
You’re afraid of making mistakes. Don’t be. Mistakes can be profited by. Man, when I was young I shoved my ignorance in people’s faces. They beat me with sticks. By the time I was forty my blunt instrument had been honed to a fine cutting point for me. If you hide your ignorance, no one will hit you and you’ll never learn.
Criticism is also inevitable. Do anything at all in life and you will have critics. Some you need for their useful ideas and input, and some are just the price you pay for being active. Criticism can help to expose you to ideas, experiences, and perspectives you could simply never personally gather in your own lifetime. My experience of setting up resources in mental health and doing consultation to garner what is most needed, where the gaps are, and the best use of resources has been that getting that information in advance is often very difficult from more than a small portion of the community. However, once a resource is running, criticism will abound if it fails in some way – and the resource can then be modified in the light of that. It’s often difficult for people to articulate what they need until they’ve started to see some options (show me a menu! I don’t know what to order) or started to have some experiences (this bit was great, that bit made me really uncomfortable). It would be a whole lot more comfortable for me if I could gather that information in advance and set up ‘perfect’ resources, but that’s more about my fear of criticism than it is about the back and forth of real community engagement. Accepting and being willing to engage with criticism has worn me out and led me to struggle with criticism fatigue, but it has also honed my ideas, challenged my ignorance, and made my resources better.
Criticism is also inevitable because of the massive diversity in people’s needs, values, and beliefs. It is simply impossible to perform any public action that meets with 100% approval. Some people are adept at criticising from their armchairs without ever risking getting involved. Some feel threatened by anything that brings an unpleasant reality to their attention, or that reduces their own power or comfort in any way. A local organisation had to fight an extensive court battle to open a respite facility for people with mental health problems when many members of the local community tried to block it on grounds such as their perceived risk of violence from the members, and possible lowering of house prices in the area. Most community services aimed at vulnerable, stigmatised populations face similar challenges with harsh criticism. Anyone who works in retail or any customer service role with the public has stories of people’s bizarre, confronting, irrational, and impossible expectations, opinions, and behaviour. The comments section on internet videos and articles is often testament to exactly how ugly ‘the public’ can be. People are highly diverse, not always rational, and not always community minded. Criticism can reflect human diversity, and it can be a weapon of human perversity and cruelty.
So, if criticism is risky, but also essential and inevitable – how the hell can I engage with it? The approaches we are inclined to when experiencing criticism fatigue are so harmful and create many more problems than they solve. Increasing control, reducing transparency, filtering access, giving up, hating ourselves, refusing to listen, and attacking back all deflect, avoid, and weaponise criticism. What are we left with? What does it look like when we engage with criticism as a healthy and essential part of communication? How can we recognise our own limits and vulnerabilities around criticism fatigue? How can we support ourselves to engage criticism in constructive ways? I am no expert for sure, but I have been lucky enough to have some good mentors and read some interesting books in this area which has helped a bit as I’ve fumbled my way through peer work. Something to explore in my next post.
Part 1. Criticism is Risky
Criticism fatigue (a term I’ve appropriated from the idea of compassion fatigue) is one of my vulnerabilities. As a peer worker I’m partly a ‘service user’ and partly a ‘service provider’. I have to deal with criticism in both roles, but the latter role brings special challenges that I’d never expected or considered before I took it on. Criticism fatigue is where I feel overloaded and want to respond to criticism in ways that are destructive. I might attack back a person I feel is attacking me, or feel so discouraged that I withdraw and stop doing what I’m trying to do or close the resources I’m offering. I might look for support among my peers in ways that re-enforce an ‘us and them’ dynamic, tightening our ranks or even having others step in to harass or rally against the person criticising. I might turn on myself with self-loathing. I might simply turn off my hearing and stop listening to ‘the haters’, taking in only feedback which is encouraging and positive. All of these ways of responding are risky and destructive. They contribute to worker burn-out, ‘class wars’ between different groups in the mental health sector (volunteers vs paid staff, management vs front line staff, consumers vs service providers etc etc), and the slow, gradual restructuring of services to reduce the incidence of complaints through a variety of ways that significantly decrease the value and increase the likelihood of harm created by the service. The risks of risk averse services have been well documented and elaborated upon by people such as Mary O’Hagan.
A number of things make me at higher risk for criticism fatigue. One is the idea that the service that has the fewest complaints is the one that is running best. This is a bit counter-intuitive, so bear with me. It seems so obvious that if you are choosing between two say, mental health support groups to fund, and you learn that Group A has about 30 formal and 60 informal complaints in a year, and Group B has 2 formal and 4 informal complaints in a year, then it seems pretty clear that Group B is by far the better run, more useful and safe service. And that might be true! But sometimes the stats are misleading.
Group B may have shaped its service to prevent engagement with those most likely to struggle with authority, structure, and diversity – some of the most challenging areas of group engagement. It refuses to allow people with diagnoses such as BPD into the group. It limits membership to those with strict ideological similarities. It places significant obstacles to join that preference long term service users who are familiar with the nature of such resources and tend to be more institutionalised – ie. highly medicated, passive, compliant. (eg. setting is socially degrading – attending meetings via collection in a van with the words ‘mentally ill’ on the side, needing permission or referral from carers or treating doctors to join the group, the group is only advertised in highly restrictive environments such as inpatient units etc)
Group B is run in a highly authoritarian or charismatic manner so members self-select rapidly and those who are not comfortable with this style of leadership leave or are asked to leave. There are elements of Stockholm syndrome or trauma bonding within the group, with an emphasis on how fortunate the group members are to be involved and how grateful they should be. Group B has a complaints process that is intimidating, difficult to find or access, or penalises the complainant. (eg one local homelessness service had a two strikes and you’re out on your ear policy, and explained to any consumers who wished to make a complaint that a staff members word would always be taken over theirs because staff were so valuable and difficult to secure, while consumers were desperate for a place – so any complaint they might make would automatically result in a black mark against them) Group B maintains its superb record through a kind of subterfuge, not by offering a better service but by being selective about the membership and making the complaints process fraught.
There’s a context of course, which is that Group B has been created in a culture of funding instability, high levels of criticism and conflict about what resources are needed, how they should be run, and where money should be spent, and the belief that staff are experts who can make people’s lives better rather than mediators who help people access resources. Media is another part of the context – negative media attention can be unexpected, unfair, and highly destructive. Criticism can cost people their reputation, their jobs, their funding, even entire organisations can die on the back of it – sometimes totally unfairly.
Other things increase my risk for criticism fatigue too. Most service providers are trained staff who have been educated with ideas that make them vulnerable to creating resources like Group B – firstly that high levels of regulation and restriction are ‘natural’ and best practice for ‘vulnerable populations’, second that recovery or assistance is about putting the needy people in contact with the ‘experts’ who’s job it is to improve their lot in life in some way, third that complaints mean you are doing something wrong (or that the person making the complaint is wrong) and that the least complaints possible is the best outcome. So staff are cast in a parental role of responsibility that is inclined to over-control, infantilise, institutionalise, take too much responsibility for outcomes, and have a frightened and defensive response to criticism. The more I take responsibility for things I can’t possibly control, like someone else’s recovery or experiences, the more I try to be perfect and infallible, and the more I try to control things I simply can’t control the higher risk I am for criticism fatigue.
Peer workers come from a different background, may or may not be trained, and use their personal life and history in their work in ways that are often very different to other staff. There’s an extra history around criticism, at least for me, that impacts my vulnerability. As a ‘consumer’ or ‘carer’ I did and do plenty of criticising of the mental health system, and so I should. As the most powerless and impacted people within that system I deserve to have a voice and speak out about abuses of power, poor practices that are doing people harm, and advocate for better. I’ve very rarely experienced having criticism received well. Despite considerable effort to criticise in constructive, non-threatening ways, using the language of the people I’m trying to speak to, making sure there is significant acknowledgement of successes and efforts to do well, almost all of my experiences of making a complaint have been futile or even destructive to me in some way. This is a history that compounds, making it less likely that I will criticise in the future, and less likely that when I do, I will do so in a respectful, unbiased, appropriate way – because I carry all the previous experiences with me and they radically impact my emotions, clarity, confidence, and expectations of success.
As a consumer, I’m also very accustomed to being criticised, fairly constantly, sometimes in quite subtle ways and sometimes very overt. As a consumer I face comments from staff such as being ‘too low functioning’ for a service, ‘too combative’ when I stand up for myself, ‘not committed enough to recovery’ when I’m struggling, ‘not compliant’ when I disagree, and so on. Much of this kind of criticism dis-empowers and belittles me in some way: makes me doubt myself, costs me credibility, and makes it harder for me to see myself and be seen by others as an equal adult who has a right to an opinion about my care.
As a carer my experiences of criticism were more randomly intense and contradictory, I found that I would often be criticised for being over-involved and under-involved with the ‘sick person’, by the same staff member, within the same conversation! Frustrated staff vented in ways that made no sense, and as a carer I was either totally ignored, or a convenient person to dump those frustrations on.
When I transitioned into peer work (or consumer consulting, or volunteering, and so on) I recall vividly each of the first times I was myself criticised for my ‘services’. Going from passionate consumer to a service provision role, I was naive. On some vague level I hadn’t thought through very much, I thought that my fire for good services, my willingness to listen, and my strong sense of identification as one of the ‘sick people’ not one of the ‘experts’ would all mean that I wouldn’t be criticised because I wouldn’t do anything that anyone would be upset about. Clearly, I hadn’t worked a lot in retail or with the public at that stage! I would use my power and my role to empower and be an advocate for fellow consumers who would be appreciative and thrive. Looking back, I sounded exactly like the most optimistic of any new staff member in the mental health/disability/community services sector, and I was in for the same disillusionment process.
Criticism when it came from other consumers was a huge shock. At times it was delivered in the most distressing ways. I was told I embodied words that cut deep, totally contrary to all my values and hopes, things that stayed with me and resonated inside me, playing over and over in my mind at night. Insensitive, dangerous, thoughtless, patronising.
Sometimes more aggressive. Bitch. Stupid. Fat. Psychopathic. Sadist. C*nt.
Often coming out of left field – from totally unexpected situations and people. Taking me completely by surprise. Having totally misread a person or situation, or having someone keep their feeling very hidden until a big blow-up.
Sometimes without any basis whatsoever – coming from delusions or psychosis that I’ve somehow been linked into without any involvement on my part.
Sometimes specific to my experiences, borne out of and riding on cultural stigma and fear about my identity – eg. as a same-sex-attracted woman, or someone who can experience memory loss when stressed.
Mostly coming with assumptions that I had intended to hurt or even harm, that I was deliberately doing so, totally aware of it and even revelling in it. That I simply didn’t care and deserved to be punished for my indifference, or harmed in return to ‘wake me up’ to what I was doing.
Sometimes then, criticism coming over and over again from the same person, so that each interaction with them was harder to force myself into because I now knew that at some point it was coming. Feeling trapped in a relationship with someone who clearly hates things about me and what I do, or is transferring a stack of unfinished business onto me. As the service provider not feeling free to leave them the way they were to leave me. Feeling myself walking on eggshells and doomed to fail.
Sometimes physically scared. Having to call security, standing up to someone enraged and a lot bigger than I am. Encountering rage, contempt, revulsion, dehumanising, and total indifference to my own needs and vulnerabilities.
Sometimes not being seen as sincere even when I desperately was. Having a heartfelt apology rejected. Finding that there seemed to be nothing I could do to help the other person see that I was human too, had not intended to hurt them, and was trying to reconcile.
Sometimes not being given the chance to reconcile. Criticism followed by cut-off where I could not address misunderstandings or respond to accusations.
Sometimes being esteemed too greatly by hurting people for a little while could see only my strengths and the good, comfortable aspects of the resources I was involved in. When my feet of clay became visible, experiencing the dramatic flip to being totally devalued and despised. Learning to be as cautious of compliments as I was of criticism because they sometimes had a close relationship.
Sometimes losing my consumer status with other consumers. Feeling rejected by ‘my people’ who no longer saw me as ‘one of them’.
Finding that taking on any authority role at all meant that I picked up the tab for how everyone in authority had previously treated this person. Being tarred with the brush of those who came before me. Finding myself tempted by all the responses I had so hated in others –
- minimising & downplaying
- distancing myself from ‘those others’ who had treated people badly
- refusing to engage or take responsibility for the privileges of authority
Criticism fatigue puts me at risk of behaving in highly abusive or destructive ways.
As a peer worker, I was stunned by how something that would have felt monumental to me as a consumer felt so incidental to me as a worker. It was incredibly challenging to pay attention to this. I felt like I was walking back and forth between two windows, looking at totally different perspectives of the same view – through the consumer window it was a mountain, and through the worker window it was a molehill. I began to understand the distortions that come with having any kind of power – how difficult it is to give credibility to the perspective of the person who doesn’t have it.
Where having power over others was almost invisible to me while being highly visible to them, I was exquisitely attuned to those in power over me, and how little I had in the context of the hierarchy above me. Hyper-awareness of my own vulnerability and sense of powerlessness went hand in hand with a new blindness to the vulnerability of those in my ‘care’.
As I flinched from these experiences and started to struggle with criticism fatigue, an opposite process also kicked into gear – compassionate consumers who needed to make a criticism of some kind became afraid of hurting me and self censored. Dehumanised and lashed on the one hand, and caught in silenced and distorted relationships on the other, it was easy to see how quickly my world could polarise into my detractors and my supporters, those who savaged me, and those who never questioned me. Caught within that framework I would be set up for increasing cognitive distortions and corruption of my goals and values.
Criticism from above was also different as a peer worker, and often centred around being too like consumers, and needing to show that I was ‘one of them’ a real staff member. (even if an unpaid volunteer with almost none of the benefits of being a staff member) Criticism often dovetailed. For example, a complaint from a consumer in a resource I was running would often need to be dealt with at the same time as triggering a review process from those in authority over me who needed an explanation. This could be very stressful for a number of reasons, my own issues with authority figures and massive anxiety about these kinds of conversations, huge ideological gulfs between my approaches to criticism and those of the team leader/supervisor/manager wanting the problem resolved quickly, and often an adversarial approach to challenging situations – time pressed and overloaded management unable or unwilling to explore the complexities of situations and finding myself with two options only – either I am right, or the complainant is right. In those situations if I want my job or I want my resources to keep running, I had better make sure that at the end of that 20 minute review my boss thinks I am right.
So I’ve found myself tap-dancing, trying to show that I haven’t done something horribly wrong where I should be reprimanded, that my resource is valuable to many and shouldn’t be closed, and at the same time trying to advocate for a consumer who is making complaints about me – because unbeknown to them they are being branded a ‘serial complainer’ and the organisation is considering banning them from all resources on the basis that they are wasting a lot of time and tying up resources that could be better used on other, easier to deal with people. Where I’m trying to show that a compassionate and engaged response to a person in terrible pain with a horrible history of having power over them abused IS one of the functions of a good resource and organisation, not a waste of time. Trying to operate with integrity under these conditions has been extremely straining.
As a service provider, I also get criticism from those outside of my resources. I once had a psychiatrist at a social gathering tell me they would be forbidding any of their clients from accessing my resources because they believed that they, and I, were dangerous. I’ve had this blog listed as an example of a dangerous and ignorant person perpetuating the myth that DID exists. Yesterday I received an email telling me I am eyesore on the face of the multiplicity community, that my approach is harmful and gross and hurting people with DID, and that it’s clear I don’t care. It would be easy for me to immediately conclude that I have spectacularly failed my aim of safely resourcing people in need and should shut down what I’m doing, but actually this is quite normal in mental health. (that doesn’t mean I get to ignore it either – but to take it on uncritically is also naive) One psychiatrist rails against the inpatient unit of another psychiatrist. Whole committees argue intensely about the definitions of disorders and what counts as real. Working for a little while in the eating disorders sector was like jumping into a shark tank of furious hostility about what defines an eating disorder and which approach was best. People’s lives, futures, families, incomes, professional reputations, jobs, and funding are at stake. It’s an intense arena for criticism, which is often lobbed like bombs across enemy lines. It’s easy to feel under attack from all quarters.
And people think peer workers burn out because we’re juggling a job and a mental health problem!
Criticism can of course be warranted and useful and even experienced as helpful! I’m using the term broadly here, encompassing complaints, corrections, and even abuse. Their unifying feature is how uncomfortable they can be and the way we are likely to perceive all of them, on some level, as a threat. We work hard in our lives to prevent, avoid, or protect ourselves from threats. Experiencing criticism as a threat is, to my mind, the highest risk for me to move into criticism fatigue. And the difficulty is, this is not always an inaccurate perception – some forms of criticism, and criticism in some contexts is a threat – abusive, costly, and unfair. All these experiences also accumulate and inform our response to criticism which tends over time to become more avoidant, defensive, or aggressive. Even gentle, respectful, and totally warranted criticism can easily be highly threatening, because it challenges my perception of myself (and others perceptions of me) as a good person and my resources as valuable and helpful.
So, this is the context and these are the risks. When I wake up to hostile Facebook messages or group turmoil and I simply want to lash out or run away, how else can I approach criticism? What reduces my risk of criticism fatigue? For me, the first step has been to explore what criticism is and go beyond my sense of being under threat. Which is a topic for my next post: Criticism fatigue part 2: Criticism is essential
I had a meltdown in the small hours of this morning. I woke around 4am and spent a long time trying to get back to sleep and ease my growing nausea without success. At about half past 5 I woke up Rose. She shut the door as I crashed into vomiting and hysterical crying I simply couldn’t stop.She rubbed my back while I sobbed and apologised because I wanted so much to not be experiencing that and could not stop it, and because I’d filled in a stack of mental health assessments the morning before and the questions designed to measure my levels of self compassion and mindfulness were making it harder for me to have self compassion about my intense pain.
Today, sick and fragile I’ve watched the world from my couch and felt myself shifting into a dark, heartsick place where I need something I can’t name yet. Restless, I can hear the wind in the trees out in the night and it calls to me in a language I don’t speak but do recognise. Better to sail my hurting body out into the dark and answer the call than to stay cocooned and feeling a poison seep into my heart.
Snatches of poems call to me. The coming upon the end of my strength. That some things are untrue even in the darkest places. (The Bad Fathers) I hunt them down and read them with tears on my cheeks and I can’t tell you why these poems or what I’m crying about.
I’m not here, but I don’t know where I am instead. I’m not me, but I have no name or place except the night and the wind. Stepping sideways into a shadowed place, there’s a memory of hysteria but no voice cries here. There’s a silence under everything, under all the sounds I hear, and beneath even that is a yearning.
As the dawn broke this morning I hunched over vomit and sobbed. My self cracked and pain broke through like a storm. I could no more stop it than stop a waterfall. My mind was thorny with the sharp and broken ideas beneath simple questions on paper. I washed upon them naked and they cut into me. “How often do you feel anxious and scared for no good reason?” Never, I whispered defiantly, never. There have always been reasons and all them are good, even if I can’t see them or name them, even if you can’t see them or don’t think they’re important. All their words, so seemingly harmless and well intended, make it so much harder to be human. The act of observation changes what is observed, it sets a fire in my bones. You cannot measure me with impartiality and likert scales that assume I am mentally ill because I am in pain, that I am defective in some way in a world that is just and safe, that pain is madness and madness is without meaning. You cannot measure my capacity to be disengaged from my own anguish and compassionate towards my woundedness without leaving a stain of shame upon my vulnerability. This is what it is. I vomit your beliefs in the night and my love strokes my back.
Here in the night again, waiting for my body to knit back together I find I’d still rather be a poet than believe that pain is sickness. So much of your ‘health’ is simply good fortune. The obsession with control and disconnection are your sickness, not mine. I can break into a thousand pieces and the night after still be moved by the wind in the trees. I am not numb, and I can walk in other worlds. Pain is not the key, but it is part of the price. With one eye I look into the sun and with the other, into the night. (you will not take me, you will not make me your own)
There was no unkindness, on the contrary, I spent a long morning with the kindest and warmest professional I’ve met in a long time. She stoked the fires of my hopes for credentials, income, employment. Told me with delight that the late Michael White, a brilliant narrative therapist who’s work I greatly admire, would have loved me. Opened all the doors I was closing with grief and fed all the starving hopes. I was near manic with excitement all day. There’s something I don’t yet understand beneath all my pain about work. I can’t see it clearly or find a name for it. It has twisted my passion into an unbearably intense pain and self hate that are triggered both by hopelessness and, more cruelly, by hope. These are the thorns that prick my spirit. I scrape over every moment that triggers shame, every opportunity I missed, every time I’ve frozen up, trying to figure out if it’s me or the world. Did I self-sabotage? Was there something I missed? Passed up? Should I have tried harder, fought longer, believed more deeply, needed less. Been less poor, less sick, less wounded, less alone. Would this then have all worked out and I could be the properly ‘recovered’ person I’ve been trying to so hard to be, and wear the armour no one can see that stops you taking the kind of hits you throw up the next morning? I’ve tasted employment and credibility and having an income and it is so much better than this. I may still be alone and naked in front of the crowd but I can afford a robe to put on when I get off the stage. And it’s also no better at all, the aftermath of passion and exposure can still strip me raw and strand me in a place without comfort.
Maybe success would cost me something I can’t see. While I’m here, wrestling with snakes in the pit, I find others reach soft hands to me, likewise scarred. Me too, they say, me too. I know this grief and hollowness, the sense of non-self, non-identity, outside of history and the great people, outside even of the ledgers of those who bind self to job. I know the death by a thousands cuts of your world, each cut a space on a form after “employment?”, a pause in the conversation after asking what I do.
My child still lives within me, what more fortune can I ask for than that? If fortune is a well from which we draw, who’s portion would I take? Here, with the other broken people I find a kind of gentleness, like the quiet generosity of the very poor. You, I am not ashamed of, sisters. Their world is not our world, and I don’t know that I’ll ever be able to wear fine clothes without feeling like a child dressing up. My limitations and my aspirations collide and I am the one that falls.
Ah well. The moon is high and beautiful tonight. The house is quiet. A life deeply lived cannot be without risk or without pain. Pain is not all there is here.
We made it! We’re starting to believe we might all be okay and to look to the future and make longer term plans.
I keep trying to blog but frankly I’ve been so sick I haven’t been been able to put together a coherent post. I’ve had a few windows of feeling better which I’ve put to good use by catching up on 6 months of business admin, various bits of housework, and baking my Mum a birthday cake. Mood wise I cope with a day or two pretty well but by the end of day 3 of feeling horrible, Rose tends to take a very teary person to bed.
As far as we know, everything is going brilliantly with the pregnancy. We’re hoping like crazy that the second trimester might start to be a bit easier on me, currently I’m still losing weight and struggling to eat. We have another ultrasound later this week which is nerve wracking and exciting. Hopefully this time we’ll get to hear a heart beat.
I had a brilliant day today, after a rough morning Rose took me to meet a friend of hers who works as a doula (a pregnancy and birth support person) and we had a great conversation. Funnily enough we found parallels between her work in changing experiences of childbirth, and my work in changing experiences of psychosis which was really inspiring and gave us something of a common language. It was exciting. We also share some experiences around health problems and chronic pain, which is brilliant for me because I’ve struggled to find other people who are going through pregnancy and parenthood from these backgrounds and who can understand some of my particular concerns.
I am so excited to be pregnant, but I also have a tangled relationship with pain, hospitals, working with medical people, being given intimate exams by strangers, being told not to worry, being called a good girl by patronising people who are wearing all their clothes when you aren’t, and many other common aspects of pregnancy and labour. I have past bad experiences of not being taken seriously, of being misdiagnosed, of suffering from intense pain that wasn’t believed, or wasn’t able to be medicated, or was thought to be psychosomatic. I feel very anxious and out of my depth facing labour at times, and my usual approach to feeling this way is to do some research. I’m keen to find safe places and people to dig into this territory with and start to find my own path. As much as possible I want to feel skilled, competent, resourced, and informed. I’m scared and I don’t expect to stop feeling scared, but I don’t want that fear to run the show or limit my choices.
This isn’t the pregnancy and experience I might have had if things had gone according to my original ‘plan’ and I was starting a family much healthier and younger. It’s also not the same experience I had being pregnant with Tam. I find myself grieving for those at times, and struggling to figure out how to turn my longer, more complex history into a resource rather than the mixed bag of hopes and triggers I’m currently dealing with. I want to untangle things enough that I can begin to see the possibility of good outcomes as clearly as the bad ones – most nights I still have nightmares where the baby dies. A friend gifted us their cot and I’ve been frozen with distress at the prospect of an empty cot in the house. I cope okay with the clothes and toys and carriers and so on, but the thought of facing another loss and coming home to an empty cot is simply unbearable to me. Rose took over thankfully, and it’s been dismantled and packed away into the shed.
There’s a fair trauma history here like scar tissue all over my heart. I most hate the feeling that pregnancy is a kind of ‘winner takes all’ situation, that at the end of all this bravery and misery all is made right if we are given a live baby, and all is shown to be hopeless folly if we face death again. I’m trying to find some way to make my choices and our journey meaningful, whatever the outcome. Isn’t that always the way, with life? The challenge for all of us?
So today it was exciting to feel like I’m finding what I need! The services of a doula are sometimes seen as a kind of luxury, but right now for our family this feels like exactly what we need – support that is informed, non-judgemental, and open to the grief and trauma Rose and I are carrying as well as the joy and opportunities we might otherwise miss. And it was exciting to talk shop with someone who was interested in my ideas and experiences too. When I’m a bit better I’m looking forward to doing more writing and giving talks again, and a little work is trickling in again which is making my heart sing. I wish I could be a doula too, but for people in mental health crisis, to help them deal with a first psychosis or navigate being diagnosed with DID, or a severe dissociative episode. That would be brilliant.
I thought I was doing someone a favour this morning but I think it backfired. It turns out that nervous student on first day of placement + very hot weather + morning sickness is a recipe for vomiting, nearly fainting, and somewhat traumatising all involved. There was a lot of fluster. Sensible instructions like “don’t just feel for the vein and then get the needle and poke it in, you have to feel again and make sure the needle will be in the right spot!” were emphasised by a slightly harassed supervisor. I nearly had the opportunity to drink the special extra fun sugar water from the fridge when it was confused with the regular cool water. And I’ve been sternly instructed that however well I feel I’m supposed to lie down for tests in the future because pinning green/white pregnant ladies to the chair is hard on blood techs. I’m not sure why they don’t have sick bags handy considering how many people go woozy with blood tests – and repeat missing the vein tests especially, but fortunately those bags they send off the vials in are handy and don’t leak. Fortunately for me I’ve been doing extra work on my needle phobia in acupuncture sessions.
I’m hanging in there. Froggie is the size of a ladybug. I’m getting a lot of nausea and food cravings and aversions. Rice crackers and fruit are my friends. I wish I felt a whole lot more excited and happy but mostly what I feel is massively vulnerable, and relief that I’ve still got a stack of symptoms that reassure me I’m still pregnant. I’m doing my childcare cert 3 and applying for other jobs, and sleeping on the couch in front of the air conditioner. Rose sorted out my resume for an application last night because I was wrecked and fell asleep – it was so lovely of her and felt like old times with her helping me try and get something for work sorted out. Week by week I’m gradually getting better, but I’ve been a long way down and my energy and confidence have taken huge hits. I find it hard to share about, partly because I’m still figuring out what happened, and partly because it’s easy to swamp me with shame and guilt while I’m still so rough. The days go by very slowly, it’s taking a very long time to reach 8 weeks and our first all important scan. Just breathing. Just hoping.
Please may our baby live. Please may life make sense to me again. Please may I find my place in the world.
Believe it or not, I’m now in a baseball league! I spent this morning running around a pitch with Rose and a couple of friends, practicing fielding and batting. I never thought this would be something I enjoy, but I had a fantastic time! Turns out the experience of sports is completely different if you’re not in high school anymore. 😉 I started to support Rose who was keen to play and also because exercise can play a huge role in improving mood and mental health. While I’m out there I’m so focused on what I’m learning there’s no room for anxiety.
Running around a field in the sunshine with my mates slowly improving my abysmal skills in throwing, catching with a mitt using my left hand – honestly, I’m bad enough with my right and using a mitt feels to me like trying to grab the ball with a waffle iron – and actually hitting the ball from time to time with a thin but of tarted up pipe… well it was awesome. The coaches don’t mind that I’m an unfit total beginner who had never even watched a game of baseball and needed every bit of lingo explained, and the feeling of catching the ball or knocking it across the field was great!
Afterwards we all had lunch and lay around with ice packs. I’ve got a pretty nice bruise from catching balls on my left hand, and some even prettier ones on my arms and chest from not quite catching a few. Unlike fibro pain, which is diffuse, bone deep, and makes me feel sick and exhausted, this is quite manageable. War wounds. I’m kinda proud. Tomorrow may be interesting but I’m planning gentle walks and hot baths.
Being part of a team, learning new skills, running around but enough stop-start for me to catch my breath, and coaches giving great advice at every step… It’s the polar opposite experience of trying to run a small business as a sole trader where there’s no guide, I have to be instantly amazing at everything, and if I’m not sure about something I’d better fake it and hope no one notices. It felt like falling backwards into a big cloud of marshmallow by comparison. Friends! Encouragement! Advice! No one to beat but myself. I think I really like sport. 🙂
The rest of today was blissful laziness watching movies and in a rare fit of American culinary appreciation, having BBQ ribs for dinner. What a great day. I am so pleased. I’ve had a real turn around this week, I’m still often pretty paralysed, but I’m having half days and whole days where I feel like myself again and life is good. I’m coming back.
Today, I called the SANDS helpline and spoke to a lovely woman. I so needed to hear that the mess I’m in is ‘normal’. It makes sense. Other people who have been here get it, in all the horrible intensity. Trying to get pregnant again after we’ve lost Tam has bowled me over. I had no idea how hard I would find it. After the devastation of losing Tam, on top of the terrible string of losses Rose has endured, by mid year things felt so right and ready. We had a donor again, I had some fantastic opportunities for my business, Rose was working…
I remember that when we first started trying to conceive, I was haunted by a death sense that took me by surprise. Trying again after loss has magnified that to proportions I can hardly fathom. When Rose crashed into severe PTSD and couldn’t work, and my own business hopes were dashed, I went into meltdown. I fought and struggled and tried to find a way through. In the end I’ve had to accept that I can’t stop it happening and just accept it and be patient.
Some days I shift my sense of accomplishment to things like – well today I’m not in hospital. I’m not costing the taxpayer money for a psychiatric bed. (which would be find if I needed it, of course, but hooray that I’m not) I don’t have a string of medicos giving me conflicting advice. I get to choose my own reading materials from the library and I have control of the remote for the tv. Plus, I’ve showered, dressed, hung out with friends, and have all my pets around.
This week has been a lot better. I’ve had a number of good days, and the bad days have reduced me to ‘useless’ but been nowhere near the intensity of 8 hour crying jags or 6 hour panic attacks. I actually felt well enough to call a helpline today – I know that sounds oxymoronic, but it’s really risky for me to reach out when I’m not okay at all, because there’s an even chance of not getting help and then I’m in terrible trouble. Today I could risk it and it helped a lot.
It feels like my life has stopped. Every cycle we aren’t pregnant feels almost like we’ve lost another baby. I’ve never cared a whoot about my own ageing, but I fell apart in the shower the other night suddenly noticing changes to my skin. I’m plagued by nightmares about my friends and family dying. Sometimes when we’re not pregnant I’m heartbroken and relieved in equal measure because at least that’s a baby I won’t miscarry. I can’t breathe properly, all the time. Remember that nightmare ten days between our ‘it doesn’t look good’ scan and the ‘they have died’ scan with Tamlorn? Like my life is on pause. Just trying to catch my breath, all the time, every day. A scream inside that never draws breath. Trying to force myself to be reconciled to something that everything in me simply cannot accept.
I feel crazy. I’ve been vaguely aware of ‘baby mad’ people from outside and never expected to be one myself. I want to be able to have a life while we try to get pregnant, and that feels impossible at the moment. I can’t fathom how that’s the case, but but right now my reality is that most days taking care of myself – eating, drinking, coaxing myself to sleep, staying in touch with my people, and so on, is all I have in me. I can’t tell you how frustrating, humiliating, bewildering, and scary that has been! It is so incredibly hard to maintain any kind of perspective and it’s unbearably vulnerable.
It’s unbearably painful to keep trying, and it would be unbearably painful to stop trying. I chose this and I felt ready and I thought we could ride the roller-coaster and walk into whatever came without regrets but now – I feel trapped. I can’t breathe. I can’t make it happen. I’m out to sea and helpless. We might get pregnant and we might not. We might carry to term and we might not. All the assurances people give us (it’ll happen when it’s time, when you’re ready, when the universe or God decides it’s right etc etc ad nauseam) belong to another world, an illusionary place where there is justice and fairness and a grand plan and some kind of certainty. I don’t live there! I’ve read the stories and talked to the people and I can tell you for absolutely sure that fertility is not fair and there is no certainty. If I knew we would never bring home a live baby I would stop right now and throw no more of my life away on this impossible dream. No more days just trying to breathe, talking myself gently through every hour, every minute. On the other hand, if I knew we were going to conceive this month and carry to term… nothing in the world could stop me. But I don’t know, and I feel powerless. How to live without regret in the face of such unknowns?
I am so frightened. I’m scared that I’ll never feel better, that I’ll have post natal depression, that I’ll be an awful parent, that we’ll never have a child, that all our friends will leave us, that we’ll have another miscarriage, or a stillbirth, or a baby who dies at 2. I’m scared that I’ll lose my mental health, my family, my tribe, my capacity to work, my lovely partner. What am I willing to give up for this? What if it doesn’t work?
Strangely, just being able to ask these questions helps so much. It gives shape and form to pain and darkness. If I can name it, understand it, share it, it’s not so overwhelming. I spoke to a stranger on the phone today and told her how agonising it has been to watch my beloved Rose suffer through PTSD. Night after night of screaming pain, to be holding her hand when she can’t even feel me there. And somewhere in all my rambling I said the thing I haven’t been able to say even to myself – Rose has loved so deeply and lost so many babies, I am afraid that if we never bring home a little one of our own, her heart will be broken beyond repair and I will lose her. I type that with tears running and my face aching with a scream I can’t sound. She hurts so much and I can’t bear it or take it away.
I don’t know how I found myself here, feeling so stuck, feeling that all my world pivots on a single dream I have so little control over. I can’t go forwards, I can’t go back. I can’t breathe. I’m ashamed and embarrassed and confused. I am good at reconciling myself to terrifying things! I’ve supported people I love through suicide attempts, I’ve built a life from homelessness and isolation, I’ve escaped communities in which I was dying and I’ve been able to grieve my losses without going back. I am good at this!
But oh, watching my love in pain. Oh, oh, my heart. Like an addicted gambler, where the stakes are everything I have done with my life until now – each month I roll the dice and hope. I can’t bring the stakes down, can’t end the game, can’t breathe.
Yes, said the woman on the helpline. It makes us feel crazy. It sends us into breakdowns. It isolates us.
Writhing like a worm on a hook. Silent because too many people already think I won’t be a good parent, or that I’ll regret it, or that I’m not up to it. Silent and frightened and embarrassed as my sense of the world falls to pieces and I’m in the biggest free fall through the deepest black pit.
I didn’t have any idea just how hard the last few months were going to be. I wanted to be able to handle them so much better! I’ve tried very, very hard to do so. And I’ve done a lot even in this distraught place that I’m proud of. I’ve helped my love find the support she needs, held her hand and cheered her on as she’s moved into an incredibly fast recovery and return to work. I’ve supported my sister through a tough time. I’ve not leaned too hard on any one person, but I have asked for help and been honest about how not okay I am. And I’m still here, still with Rose, in our lovely home, caring for our pets, gardening, looking after myself, hanging out with friends. I might have flunked college and given up on my business and not been able to write or paint and have no idea what I’m going to do for work – but I’m still here. My life has not burned down around me. I’ve read a lot of books. I’ve even joined a baseball team, just last night, with Rose and a couple of friends. I still have my life and I’m starting to come out of the deep darkness. I was lucky enough to have the opportunity to hear a beautiful talk about supporting trans men at a local pregnancy service a couple of days ago and my heart was so buoyed by it – I love work like this so much! I can’t wait to be well enough to get back to it. Our stunning garden blooms outside my window and it feels like a metaphor on a day like today. All that hard work months and years ago, and today when I have done nothing – not even got dressed, I just sit here and watch it bloom. The effort pays off and carries me through the times I can’t do anything. I rest and it carries me through. I rest and it carries me. For that I’m thankful.
Two full good days in a row… Today was bumpier and harder work but still good. Tonight I’m driving Rose and myself home from a family get together, musing on what this might mean and why – being ‘alternative’ seems to have unlocked something vital in me, being alive at night, ignoring the ‘normal’ world… And we drive into the largest blackout I think I’ve ever been in! The streets are eerie without streetlights and I nurse us through dark intersections with my hazard lights on and creep to the roadside out of the way of emergency vehicles. Everywhere people are roaming out of their houses to see what’s going on and the night has a strange, wild, lawless feel to it.
Back home we settle our animals and find matches and candles. We don’t want to open our fridge so we go to bed with a supper of chips and water. Blackouts were always a special time as a kid, my folks would haul out the camp stove and cook up dinner or hot chocolate or popcorn and we’d sit around candles and play cards or have a book read to us. I treasure these times when ordinary life is disrupted in a small way, like lightning storms or summer rain, they are invitations to step outside of routines and experience something different.
They can be a time between, a place between worlds. This is the kind of place I can live in, breathe in, make art in, make love in, hear my own voice in. In the darkness I’m feeling my way along, finding these strange illuminating moments of clarity, moments when the veil lifts and the pain falls away. I don’t understand it but one day I will, and until then I’ll keep going.
I’m just coming to the twelfth hour of feeling like myself again today, and it was blissful. For the past two nights I’ve gone back to sleep after waking early and distressed, and both nights I’ve dreamed for the first time in many months – that’s got to be a good sign! I woke this morning feeling rough and did good things anyway – gamed with my sister and had a hot cinnamon donut for breakfast. I can’t tell you how ridiculous and frustrating it is to be trapped inside a nervous system gone haywire, literally trembling and rocking with distress while doing something I really enjoy… That’s been my world lately, hours and hours of endless distress despite everything being well. But at about noon it switched off as suddenly and without tangible cause as it comes on, and the whole rest of today has been simply glorious.
Rose and I spent the day with friends, we had fun at a ball range practicing our baseball skills, had a picnic, watched movies, ate ice cream, played games, and had a great time. I am so relieved, it’s the most wonderful thing in the world just to feel like myself.
I feel so incredibly fortunate to have friends and family who are comfortable inviting me around and still including me despite the high chance of panic attacks and chronic distress at the moment. I feel so lucky and loved. I’m having to cancel a lot of things I want to do at the moment and I’m so grateful for people who get it and know that I’m not hiding behind anxiety as an excuse to get out of things, that if I say I wanted to come I really did want to be there.
The most terrifying thing about feeling this awful and out of control is my terror that maybe this is ‘me’ now, maybe this is what the rest of my life will be like. Today what helped was deciding that even if that was the case, I was still going to be part of life, to do my best to live a decent life; to be present, to care about people, to limp along as best I can however messed up and broken I feel. This thing that’s got me by the throat and is scaring me out of my mind is not going to win. I’ll fight every step of the way. How wonderful to be rewarded with so many hours in which breathing happened easily and without thought. Please let it happen again, often, please.
I had a very dark night last week, unable to calm down intense distress for many hours and terribly afraid for myself. I would use all my skills to settle and even get myself to the point where I fell asleep, only to wake a few minutes later in panic again. I was able to get an emergency appointment with my psychologist and went along – for the first time in my life – in a state of hysteria. She’s diagnosed me with exhaustion, and helped me get a quick appointment with my gp for meds to calm down the intensity of my distress. I’ve now got a script from my gp for anti anxiety meds, however they are not pregnancy safe so they are a last resort.
How can this year have done such harm to me, I asked the psychologist – I’ve had much worse years! You’re thinking in terms of trauma, she said, look at all the loss and grief of this year instead. They are significant. Stop everything and do whatever you need to to rest.
So here I am. Most days have two distinct aspects to them, one in which I’m genuinely fine, even productive, cleaning and cooking and hanging out with friends. The other in which I feel like I’ve fallen off the planet. I can’t catch my breath, all of life feels without meaning or purpose, and I’m tormented by fears and existential questions that strip me to the bone.
I found this lovely series of artworks that resonated with me: Superman Falling (actually titled ‘No. Superhero’ by Ole Marius Joergensen). There’s something so terribly human about this place, this state, a kind of cultural heritage none of us would choose to have. Nobody wants to be quite this human. I certainly don’t, although sometimes I think I catch a glimpse of something beautiful in it all. At times I’m saturated by death, surrounded by the void. I feel very humiliated by it, frustrated, angry, scared.
Sometimes it feels like a punishment for big dreams, for reaching too far above my circumstances, for thinking I had answers or anything to offer other people. How the so called mighty do fall. And how people like me are supposed to conceal such terribly human frailty, such weakness. I am healer, supposed to be above such vulnerability. I also find myself feeling very alive at times, which is jarring in contrast, but refreshing too. Better feeling alive then dead, than numb then dead.
I’m not getting enough sleep, I wake early every night in a rough place and have to find ways to calm down and stop thinking about death and people who have died. I take great comfort from Rose sleeping beside me, and I bring my friends to mind and tell myself I’m loved. I read books by my little book light in bed, or when the anxiety nausea is bad I get up and slowly pace until my gut un knots. Sometimes I lie on the couch so my tossing won’t wake Rose and I pat a cat, focusing on the feel of her velvet fur, trying to be present. I stop myself calling people I love to check they’re still alive or tell them how much I love them which I’m sure would get very old at 3am.
If I still can’t settle I call Lifeline and tell them I need to hear a friendly voice. Sometimes if it’s dark I stand naked out the back and feel the night on my skin. My heart seems absolutely broken and overwhelmingly afraid and I talk to it soothingly over and over, trying to bring it back from a place of despair and terror. Distract, be present, plan. Don’t think about death. Plan the following day, plan dinner, wonder how friends are going, sit and look at our astonishingly beautiful front garden full of roses and poppies and marvel at the abundance. It will pass, it will pass, it will pass.
Today has been long! I made it into college not feeling good and spent the whole day calming myself down. I’d try to talk to my tutor and start gasping and crying. I tried sitting in the sun, reading, pacing slowly around the building, sipping water, a hot cuppa, a lot of gentle self talk, a phone call to Rose, food, changing all the words I was using about the task I was supposed to be doing, sitting with the very nice friends in my class, looking at other people’s work for inspiration, and all it helped a bit. But the moment I tried to do any work my headspace just crumpled into a big pile of trembling, breathless, unhappiness. So after 6 hours of gentle coaxing I gave up and came home. I’m currently hiding in bed, hanging onto the funny side of being someone who can and has coped with some truly terrible life situations and crises, being unable to make a print at art school – that most luxurious of pursuits that many people would give their right arm to have the opportunity to do! It’s like coping with dragons and being undone by a moth phobia. O.o
It will get better.
I’m still here.
It’s really hard to fit words to what has been going on.
Things have been really hard. Nothing feels like it makes any sense. Every day I feel like I’ve fallen off the planet. I work hard at it and most days things settle by nightfall. Whatever answers I think I’ve found, whatever peace or acceptance or path forwards, none of them persist into the next day. I fall off the planet again. Whatever worked yesterday or last week or last year doesn’t work today. Nothing makes sense to me. Everything has fragmented and I’m haunted by a terrifying nihilism.
I went camping. I’ve withdrawn from my online world. I eat, I cry, I write, I distract myself, I sit in the garden, walk the dog, cook, read, focus, talk it out, and clamp my mouth over the yawning darkness in me and sit meekly on the edge of the lives of people who are doing okay right now and kind of bask in their warmth. I remind myself that I’m loved, valued, okay, accepted, and deserve to find some peace. I try not to lean on anyone too hard. Other people try to help me feel something, they talk or listen or make suggestions or help me do things. Take me to the beach, or out for ice cream, or share lunch with me or just reach out. I’m being patient because it’s all I’ve got.
I’m not suicidal or starving or self harming or at risk in any of the conventional senses. I’m not sure what’s wrong. I’m anxious and depressed except not exactly. I’ve got ptsd sort of. I’m kind of grieving. I’m going through an existential crisis, possibly. It’s exhaustion, in a way. It’s regression, somewhat. I don’t know. Nothing exactly fits. All of the above. None of the above.
I’m still alive though. I’m having a really rough time. Crying until you throw up rough.
Most days I also find a place where I’m okay – just okay – or even really okay – contented, happy, settled, baffled. I slip into bed between my love and a cat and my skin is thrilled by the soft feel of the blanket and the warmth of cat and skin and I feel nested and safe and loved.
Every bit of perspective I garner is gone the next sleepless morning when nothing can settle me. My vulnerability is overwhelming. I am scared, confused, angry as hell, exhausted, frustrated, and I want my life back. I’m holding onto one college subject by my fingernails. I sold a beautiful painting and felt for the whole rest of the day that everything was going to be okay and I had a place in the world and things would work out. It’s like I’m living a kind of nightmare groundhog day. I spent savings on fuel to go camping because under the stars is my best psych hospital usually and it was great and it was horrible and I think it helped… I got home to sick pets and bad vet bills and sick Rose and I’m currently on antibiotics for a sinus and tooth infection and just had a root canal re-drilled and packed. The garden is glorious. My system feels like it’s been turned inside out and put back together by a 2 year old. Each day I make some sense of things that feel inherently senseless and find a way to live. Each new day I have to find another path. It’s not leaving me much time to actually live, achieve goals, be useful, get my dishes done, enjoy my life, or even connect with people I care about. Reading calms me down, as does watching movies. Both have clear narratives and they are soothing when I feel like I’m freefalling – things are cogent and march towards conclusions.
I’m determined something will change. I will process what I need to process, grieve what I need to grieve. I’ll let go of each tooth and find some humour in my bewildered sadness, let go of my grief about goals like having better health insurance, savings for tooth replacements, a good paying job. I’ll go hunting for more information and approaches to find something that helps. I’m not giving up – I’ve worked so very hard for this life and I want so much to BE here and be able to feel it and connect and be in it. I don’t know what’s gone wrong but I want to come home.
Right this very moment in time, I am utterly content. It’s 5am and I’m still not asleep because sleep seems to reset the anxiety and I can’t get bear to let go of this moment just yet. I can breathe. I’m in bed, or rather, I’m on the couch in the loungeroom with Rose sleeping bedside me and the animals all around, because we thought a change of environment night help. It’s dark and quiet and beautiful.
The past 6 weeks or so have been hellish. Stuck in chronic distress all I’ve been able to do is look for windows of time when things are not so bleak and soak up what I can. Rose is on her way up I believe. Not back to her old self yet but certainly her windows of good time are getting bigger and lasting longer. And I think I am too, a bit slower and more bewildered, but starting to come out of it at times. A couple of nights ago Rose sent us to bed alone with journal and pen and candles lit and for several hours we were in no pain at all – gone, like turning off a tap. But that night in sleep it all returned.
Today I had a remarkable conversation with an acting student about the making of art and being centered. She was so grounded herself that just being in her company I felt myself calm and settle into some unreachable peace. When I went back to class the trembling nausea and catch in my throat returned, but the memory of that peace wasn’t entirely gone and all afternoon I cultivated it.
I’ve had the most wonderful evening I’ve had in weeks. Friends came over for dinner and hugs and games. The lovely lady who bought my first print left a beautiful comment on this blog and I felt a tiny flicker of warmth when I read it! Someone asked for a referral locally and I felt a tiny sense of looking forward to getting that professional support referral project up and running for my networks… The joy of that! To feel things again! To care about my work again!
When it’s gone it’s so terribly gone though. A couple of days ago I phoned my mother from bed, so distraught she cancelled her day and came straight over. I spent most of it crying. There’s been many days like that. I coax myself into housework and college and doing my best to function, and I sob inconsolably the rest of the time. Focusing, meditation, conscious breathing, journaling, warm baths, sitting in my garden, distractions, good company, and all the millions of other tools I have to manage tough times seem to do nothing.
Yet, in the presence of someone deeply calm, something in me calms, like a distraught child being taken by the hand and walked through all the dark and scary night back home where it’s safe, and realising on reflection that they weren’t so far lost after all. It’s infuriating. It’s wonderful.
I had a sense today that following my transformations this year, in some ways I’m exactly the same highly strung, passionate, intense persons I’ve always been. But in others I am totally different – approaches that used to nurture me now do nothing, while I find myself deeply moved by approaches that have always been useless to me. Something has changed, and I don’t know it or understand it very well yet. I have the sense of myself – my body and mind, as a new kind of instrument I don’t yet know how to play or care for, don’t yet know how to hear the warning signs of problems, or nurture to get the best music from. It’s been a harsh lesson, like leaving a guitar out in the rain! I’ll learn. I’ll do anything I have to do.
Right now I’m going to surrender to sleep, and try to accept with grace the possibility that tomorrow I’ll be a trembling overwhelmed shadow of myself again. I can feel the lump in my throat, the bite of nausea. It was real, I did find a window, and I will find more. I’m going away shortly, camping with my sister in the hopes that this time my night under the stars will be helpful and reset some of this anguish. I hope the dawn is near for me, I do. I am grateful to be reminded of the humbling sweetness of those who have very little being kind – how few of us who live privileged lives ever get to feel that? It flattens those hierarchies of important people so quickly, stings but only our pride. You can’t look at people the same way when last week you were so broken and they so kind. They become your equals, even your teachers and mentors. Always learning, always something to learn.
Wish me luck.
If I’d been able to put something up here three days ago, I’d have said we were going okay. Rose held my hand through the stall at the Pregnancy Loss walkathon. It was just like old days, her stalwart, me skittish. Not many people were interested in the stalls, but I did sell one print.
Two days ago I’d have said I think we’ve turned a corner. I let go of all my fears and plans and expectations and found some sense of ground beneath me, the present moment full of light and glory. For a couple of days I could breathe most of the time and coax Rose into doing things that helped us both feel more alive. I so wanted to write that post and share that news. We made each other laugh, even in flashbacks and darkness, and the darkness was less dark, less painful, less total.
Today, I couldn’t sleep for hours. I’d settle then startle awake to some concern, personal or existential. I deeply want to caretake my people and my networks but I’m too heartsick to do it. I can’t get back on my horse. I can’t be inspiring or hold hope or protect or save or make things better. I’m here, in the mud, too injured to climb back on my horse. Here in the mud, knowing that my life is beautiful, my tribe is beautiful, that I’m vomiting pain in a life I’ve worked so hard for and built so painstakingly. I’m peirced through by a sense of failure and loss and my own woundedness. My baby died. My love is hurting. My business runs at a loss. The word ‘recovery’ is like a spear in my side. I want to be riding my horse. I’m just going to lie here and hurt.
I know some of you are in the mud too. Broken dreams and hurting hearts. A memory of strength and energy and courage. And it’s so desolate and desperate. I know I’m not the only one and I’m not alone. Whatever your life looks like on the outside, you can choke on pain. Something inside screaming out for help and nothing you do calms it. Working hard to do things that might help, to shore up the river banks and sand bank the doorways against the sense of self hate and defeat.
The day with my art prints stall was very long. I took some art supplies and started a new oil painting. It’s Tam’s peach tree in bloom.
Sometimes you celebrate each other from the tops of mountains, when things are going your way and the whole world glows with possibility. The wells are full to over flowing, the larder is stocked, the roads are wide and smooth, the sun turns the world to gold. Love is easy, forgiveness is easy, kindness is easy. All things are in abundance.
Sometimes the path is narrow, twisted, bewildering, faltering into bogs and falling over cliffs.
I love her because even when I’m scared I’m not scared of her.
I love her because even when she hates herself she’s gentle and tender with me.
I love her because when we have very little, what we have she shares with me.
At night at the moment we both toss in the dark, dream-wracked and afraid. Sleeping in shifts between storms of tears, a broken voice crying out, the shudder of nightmares under skin. We bump along like two boats in black water and a moonless night, kissing hulls to be sure there’s someone still there. Over and over we turn to each other, hands reach like a bridge over the gulf, feet tangle like vines around each other, lips touch shoulders and we murmur soothing sounds or sing snatches of lullabies to each other. Stroking fevered faces, calming the hair back against arms, the arched back to rest again into soft bedding. “Love, love” we croon like doves, the inarticulate language of night; sharp cries like gulls, and the hushing of mothers half sleeping, voices a deep soft purr in the chest.
Adventures are tricky things. Reflected on from comfort, the sharp edges dull a little, the black nights turn pearl grey in memory. Here in the moment it’s stark with presence, bright as a papercut, a piece of glass in the shoe. It’s not called an adventure if everything turns out according to plan, if there’s no dark nights, no fears to conquer, no cost.
In the full glory of a spring day, sunlight on her bronze skin, her mouth open with laughter, her eyes full of light, she is beautiful. In the dark hours of the soul’s midnight, her body painted with pain, eyes closed against the burning memories, lips drawn back hard against teeth, she is beautiful. It’s a different kind of love that grows here, threadbare, harsher, there’s pain woven through it, and bone for strength.
She holds me in the shadows, sings peace to fall like rain down upon us both. I have seen the moon bright and full, and dark and empty. I know her in triumph and tragedy. There’s still love, in each place, the thing and the shadow of the thing. The rainbow and the rock beneath.
It’s 5am. I can’t sleep. I have terrible vertigo and hives all over my body. I’ve been reading blog posts by Jenny Lawson and Will Wheaton about depression and anxiety and I’m curled up in tears and feeling less crushing alone in my black pit than I have in days. I’m really, really tired. I’ve been trying so hard to find a way through this godawful smog in my head, looking for hope like a starving person, doing my best to counter the black rain of failure and despair, yearning with everything in me to be able to feel the kindness and love people are giving me. Sometimes I can, for an hour or two. Often I can’t. I want to so badly, I do everything I can to hear and receive and take in and believe, but I’m on the other side of a wall. I don’t mean to be. I don’t want to be. I promise I’m trying, but it’s bigger than me. All the want in the world isn’t making it go away.
Reading tears in rain by Will Wheaton, I felt a sense of relief. That feeling like a failure and being a failure are not the same thing. That people who have successful careers also feel the crushing insecurity I’m struggling with. I’ve collected my box of art prints for the walkathon on Sunday and I think they’re beautiful, and at the same time there’s a kind of violent rejection of them, bile in my throat, fury and exposure and loathing and a desire to destroy them, to burn down all the tiny dreams that are still breaking my heart, still leaving me vulnerable to this feeling of failure, this sense of not ever being good enough. Quivering with distress I step back from them and try to breathe.
Yesterday morning I had terrible vertigo, I was crying out and holding onto the bed because the room was flipping around me like a car being tumbled down a cliff. Rose got me a vomit bag and cold water to sip, then held me tight and sang to be until I went back to sleep.
Last night I filled her water bottle and got her a vomit bag when the flashbacks got bad, held her close and sang to her until she fell asleep. Nights are hardest for her, mornings for me. We’re limping along together. How much I love her.
Two days ago we took a friends kids to the show together and it was a beautiful day, all day. We spent the whole day on toddler time, moving gently, lots of rest, lots of snacks. We got stuck with a half hour wait for the train at the end of the night and each took a girl to sing her to sleep. Rose with the 7 year old cuddled up and dozing under her arm, me with the little one in a sling pacing slowly around them. Each of us looking at the other with stars in our eyes. A quiet place, in the night between trains. No panic attacks and hardly any flashbacks that day.
I can’t beat it from inside. I watch for the windows when it’s less and do what I can then, take in what I can. I’m so tired, and so tired of feeling guilty and responsible. It’s a bit of cruel joke to feel so awful and feel worse about failing to stop myself feeling so awful. I don’t think I’m going to make this better, just breathe inside it, don’t destroy anything, and wait to heal. I’ll bloom again.
It’s not my fault, right? I don’t think it’s my fault. I didn’t mean it. I’d stop if I could. I’d make it all better if I could. I’m trying. And trying to find places I can rest from all the trying.
Jude, the rose that Rose and I bought on the day of our engagement, has bloomed. He’s so beautiful.
We’re still here. It’s been a long week. I think the downward spiral has arrested. We spent Wednesday night in the ER because Rose was suffering chest pain – almost certainly muscle strain because of her extremely painful flashbacks, but you can never be too careful with sudden chest pain so in we went and they kept us all night doing tests. She got the all clear at 7am. I slept for a couple of hours in the van out the front of the hospital while she napped in a dark corner of the ward.
We’re breaking the new, devastating patterns, with help. Rose has a new trauma therapist on board, I’ve been reading up on Focusing and holding onto my people’s belief in me as a decent person. There are still very hard hours in every day, but at no point in the past two days did I feel like I was dying. I managed a full day of college today, and started a new oil painting tonight, despite some pretty intense anxiety and stress. Art as business is not doing kind things to my head. Last night I went for a late night walk with Zoe and found the world shifted and poetry came back to me.
Dropping the ball like this means a juggling act to keep up with those responsibilities I haven’t dropped. I’ve got major preparation work to do for a stall in a week and I’m worried about it. I am still giving talks here and there – they’re stressful but also like small lifelines for me currently – feeling of use is the strongest antidote to feeling like I’m dying.
We’re limping on together. When she’s happy, she shines. I love her to bits.
Rose is rough, I am rough. I’m holding the fort, for myself and with her too. Just holding on.
We’re swimming in trauma reactions and broken bits of our hearts. Deep wounds and deep grief. PTSD is incredibly hard, very unfair. It exposes when we most need protecting, makes us tremble with fear when we most need comforting, turns the world dark when we most need the light.
I’m trying to find a way through the stories – that this is real but also that the fear it brings with it – that this is permanent, is not real. There’s such a tangled web of truths and lies and fears it’s hard to find a way through. I find myself falling with relief back into the stories where mental illness is compared with physical – for all the problems with those analogies they also fit and give some shape to the pain we’re in, some way to make room for the suffering and argue for understanding. My poor love is devastated with flashbacks and I find myself debating whether I’d say ptsd or epileptic fit if I needed to explain why we needed help in public to a stranger… It’s debilitating and I can’t navigate the complexities of what has happened to us any more, I’m back to needing the basics of something I can fit in a sentence, something I can scrape clear of the rot and find a place to stand on. Illness. Injury. Whatever. A real thing, a powerful thing, that wishing or trying hard does not make go away. We are dealing with a thing that is bigger than us, and unfair, and very hard, and we are doing it the best we can and each day hoping tomorrow may be better.
And yet, as I drove up the freeway today, looking for a way to pass an hour without the darkness obliterating us both, I felt that knot of pain in me, the thing in my throat I can’t breath around, the indefinable thing that is and is not pain or fear or grief or any thing I can put a word to… just some kind of deep hurt that I can only recoil from – something unbearable. Which is bizarre to me, because I’ve been through so much that was unbearable. So much worse than this! And alone, and in agony, without hope – I’ve been here before and yet this is a new hell, unfamiliar, and I’m without assurance that I’ll come through it. I can’t feel that.
I wondered for a moment what it would feel like if I stopped doing all this to try and ‘get better’ or feel better, if I stopped the self care, the patience, the determination, all the ways I was approaching this pain, and let it be instead. Instead, in fact, made it welcome. And the knot came undone, in my throat. I could breathe for a moment, I was in pain but it wasn’t beyond bearing any more. It just hurt. I didn’t have to run from it or bind it up or try to heal it. I could just be with it. Recovery never looks the way people talk about it. Tonight, I’m feeling the black rain falling under my skin. I’m patient and mostly I’m holding the fort. Some moments, I slip into the slime and under the water I can hear the sound of my dreams dying.
Some moments I read blog posts like Celebrating my blog from earlier this year, and come across lines like “I’m actually starting to take some positive feedback on board for the first time since I was a child. I can see clearly what I’ve been doing all these years with this work.” and the contrast is so great it’s almost unbearable. How did I lose this? How completely I have lost it. Only the memories haunt me.
I have spoken with a few close friends lately about all the losses I’ve faced in the past few months, particularly around my business. So many wonderful things have been cancelled or rescheduled or not come to pass, none of which I can really talk about. I thought I was ready, and to the sound of enthusiasm and support and a sense of community, I’ve jumped. I tried to fly and instead I’ve fallen. Each loss or dead end or deferred hope alone was manageable, but my world has been full of them lately, and I simply can’t buffer them, not in my situation. Everything has an impact in my world, financially, and on hope and energy. I rolled with the punches for the first few, but somewhere back 10 losses ago, I lost key things I need to keep going and didn’t realise yet until there was no more world beneath my feet and I was falling into a dark place.
I am trying to send cards or letters to anyone who has supported me and I have managed one so far, which I nearly threw up with stress to do. So vulnerable, nerves scraped raw and heart broken. I simply do not understand why anyone would support me in any way, let alone a stranger or near stranger send me money. I want to understand it but right now I simply can’t process that what I’ve done has helped anyone or that people might wish to be as madly generous to me as at times I’ve been to others. It’s a simple equation I know, but I can’t make it come out right in my mind. I hope it will again.
I was talking to someone kind the other day and when I listed all the losses, one beside the other, of the past few months, they were shocked. “Deep grief” they said to me. “Of course you are worn out, that’s such a lot to deal with, and such a shock when things seemed to be going so well!” Shock. Could that be the reason the sun seems dark? The reason that people telling me, over and over, that I’m okay, that I count, that I’m enough, and that I’ve done some good in the world simply doesn’t make sense to me? Is this how shock feels on the inside?
“Stop asking what’s wrong with you!” one friend has said to me – “of course you’re struggling, it’s been such a hard year! You can’t take hits like that and not need a break.” And I think of life cycles and cycles of energy and of day and night and life and death and needing to stop and retreat and weep sometimes to find that joy in life again. I think of going on without stopping through one loss and then the next and the one after, still smiling and still hoping and still wringing hope from my heart while the politeness became and mask that slipped and gouged into me and my heart choked.
“Deep grief” I’ve written on my wrist in permanent marker, to remind me – this is why it hurts so much. There’s a real reason, even if it doesn’t make sense in my head. I’m not just broken or crazy or doomed. It will heal. I will see the light again. And this thing that feels unbearable, I’ll find a way to live with, like I have all the others, right. Right?
For now, holding the fort.
Dear lord. Sometimes life makes sense and feels manageable and there are plans and directions and a sense of hope. And sometimes life is just… white water rafting, when you thought you were going hiking. When you packed for a picnic after a bush walk up a hill. And brought your favourite collection of sharp, spiky implements, your best boots, and certainly no paddle.
Guess I’m still human after all, spiritual awakening and all. At the moment I wake up many times in the night, full of deep dread and horror about very small unimportant matters. The feelings are nebulous, intense, and difficult even to name. It’s taken me a week to begin to be able to discern each flavour independently – there’s guilt, there’s failure, there’s grief… Often it’s just pain, a kind of bleak anguish that’s unbearable. It can’t be sat with, can’t be visualised away, can’t be un-fused from. I took myself down the beach overnight, and instead of finding peace I sat alone in my van, arms flung wide, begging for help, for peace, for respite, before falling into brief exhausted sleep, only to wake in agony again. The sudden decent, the depth of it all caught me by surprise and left me reeling.
Each morning I wake feeling something I can’t really name. It’s not self destructive, I don’t feel the urge to self harm, I don’t feel suicidal, exactly. It’s unfamiliar and horrifying. The only way I can describe it is feeling like I’m dying. I have no sense of hope or a future at all. My throat is half closed and I can’t breathe easily. If I manage to meditate or focus or in any way create some room between myself and the feelings, I relax and immediately go back to sleep. Then I wake 20 minutes or so later, intensely distressed again. It’s demoralising and exhausting.
I’ve been reaching out to people. The only thing I’m finding helpful at the moment is the kindness of my tribe. I feel lost, and I can’t see myself clearly any more. Other people holding hope for me, telling me that I am not worthless, that I do contribute to the world or their world in some way, are holding a mirror in which I do not recognise myself but I can at least acknowledge that this might be me, even if I can’t feel any of it right now.
It’s a kind of hell. I’ve appreciated touching base with others I know go through hells like this. I’m finding that I come in and out of it. I can talk about it quite calmly now. Tomorrow morning is likely to be another world entirely. In it I feel stripped, vulnerable, defenceless, frightened.
Rose is in a hell of her own. Flashbacks can be devastating. Hers can be severe and completely overwhelming. We’re slowly finding what helps, but it’s all from scratch. Nothing that’s previously helped is working. So far company is better than being alone in them. Children or animals are deeply grounding and the best approach by far. I can hold her hand and sometimes talk her through it or sing to her. A wet cold cloth on her face and neck helps. Sometimes weight is grounding – I cuddle her or Zoe lies on her. Sometimes a dog lick will break her straight out of it. None of the other grounding techniques she usually finds helpful are working. It’s a slow trial and error kind of process.
One of the things I love about her so much is that even when she’s in hell, she’s kind. I was a wreck this morning and so was she. But she still got up with me, cut me up veggies for lunch, and dropped me at the tram. Our night was bookended by her flashbacks until 1.30am, and my unique brand of existential misery at 5am. There were still cuddles and gentleness, reading Harry Potter to each other, back rubs and sympathy. I’m lucky and I know I’m lucky. ❤
So, I’m trying to clear the decks as much as I can without actually destroying any of my projects. I’ve talked myself out of closing down my business and the networks for now. I’ve wrestled with the mess that thinking of my art as a business creates in my head. I’ve failed and fallen over and messed up most of my attempts to follow through with my goals over the past couple of weeks. I’ve failed to finish an essay and had to withdraw from another class at college. I’ve answered a few emails that I could open and read and still breathe while replying to. I’ve cried in the toilets at college when hearing about a couple of people with DID who killed themselves. I’ve reached out to people who are being kind, sending messages of support or telling me how they see me, see my work or believe that I have a place in the world, who recognise their own dark hours and don’t judge me or think less of me. I’ve been grabbing hold of anything that resonates, reading about focusing, coherence therapy, moving towards the pain, and just holding on, minute by minute, waiting for something to change.
I found a sentence that I loved recently – being in the land beyond the maps. I’ve felt like through so much of my life. Multiplicity, psychosis, my art, grieving Tamlorn and finding myself in an experience of profound awakening… If you walk the paths you will end up where all the others who walked those paths went. Paths are what we crave most when we feel lost. The certainty of hope. We’ll trade in almost anything for it, and bind ourselves into lives that don’t fit us at all. What’s much harder but much more likely to take us somewhere amazing is putting together the skills and tools and resources we need to make our own path and follow our own stars.
But hell, it’s not always easy. I guess one of the things I’ve been doing in all this pain is taking up my rightful place in my tribe. I’m not some kind of guru to follow. I’m not a shrink. Even the idea of ‘peer workers’ who have recovered and have some kind of wisdom to pass on doesn’t feel real comfortable. I don’t have the answers and I can’t take away anyone’s pain. Sometimes I help people and sometimes I need help, and that help is mostly in the form of simple kindness and connection. I’m as human and fallible and full of doubt and uncertainty as the next person. I know a lot about surviving hard times and sometimes that’s brilliant and sometimes it means almost nothing.
Thank you, those of you who have reached out. You who share your own hard times honestly. You who – for reasons I can’t really fathom at the moment – send money or support me in some way. Thanks so much for being part of my world and not hating me when I lose my way. You help me not hate me too. I’m glad to not be alone.
Some days I give hope and some days I gratefully receive it.
Rose and I are having a tough time. Flashbacks, panic attacks and terrible depression are our normal right now. We spent an hour on the couch today weeping over Tamlorn’s ashes.
Kindness and care from our loved ones helps. When I can’t feel hope any more, they hold it for me.
Even on the days when it feels like we have so little to give each other, we are kind at least. It’s not everything, but it’s not nothing. Even on a day as black as today, we have small victories to celebrate.
So I’m noticing a cycle. I soar into something wonderful – a new capacity or skill or realisation. Life is wonderful, almost ecstatic. Then I find myself grounding and trying to integrate the new experience with my life and ideas and past. It’s messy and complex. Then something glitches badly and I find myself way down in the swamp.
Messy turns to painful. I hurt and cry and become anxious and overwhelmed. No matter how many times I’ve gone into and come out of the swamp, a key feature is that at some stage I will lose hope, lose all sense of competence, lose any guiding light. In that place, where my vulnerability is total and the darkness around me absolute, I will discover the block. Forced into confronting it, I will find a name for it and begin to explore it, deeply afraid and very resentful. Once I’ve found this block, I will be released from the swamp. In understanding the block I am freed from it and come soaring back into flight again.
It’s a cycle of learning: not an illness but an emotional circle, of learning and doubt and reflection that repeats and at each stage offers me an opportunity to confront something key and learn. With support and with time for honest reflection I am learning how to tune in and listen more quickly to myself, and my writing and journals and poems help me tremendously, become paper mirrors that help me see me. Focusing skills help too.
If I don’t listen or tune in and I don’t find the block, at a certain point I’m come out of the swamp anyway, but I’ll go back in shortly, over and over again in the most exhausting and demoralising spiral. If I find the block and come out of the swamp but then stop tuning in to myself, I’ll try and push myself through the block instead of negotiating it and I’ll make a mess of myself, driving myself to exhaustion. If I keep listening I’ll find out how to unpick the mess and go forward in a way that suits us and gives us freedom.
Adult learning. It’s a fascinating field! Emotionally, it’s painful and messy. But when I see it coming and get out of the way and understand that by tuning in it will move along faster, I can see how it works and why its needed, and how people can get stuck. Yesterday we figured out a block and settled. Today, I feel fantastic again. I’m glowing with health and enthusiasm and enjoying my work again. So maybe I need a note on the bedroom wall that says – “when you go down, listen well, and you will come up again. It will be okay, you have been here before and you will be back again.”
People don’t like cycles much, we tend to pathologise them. But cycles are intrinsic to nature, seasons, day and night, even our own cycles of sleep and wakefulness. Rhythms and tides are how living things work. And all cycles have their winter or their dark night in them. It doesn’t have to mean anything is wrong. Some knowledge we need in life is bright, beautiful, glowing and sitting on our lips like honey. Some is dark, painful, angry, wounded, and spilling from our mouth like blood. Some things we learn in ecstacy and some in anguish. Some things we dress in our finest clothes for and some things we must be naked to embrace. All of it can be life giving, can be part of a whole, deeply felt life.
It’s been a long week. I’m very tired and feeling the bite of extra work from the move… and extra tiredness from all the emotional things going on. I’m feeling a bit run down, mouth ulcers and a headache. I’m hanging out in bed this morning with Zoe.
I keep trying to write blog posts but my mind isn’t quite clear enough to get them structured and polished and out in an hour the way I usually can. That’s okay. Maybe tomorrow, maybe next week.
Last night we had the first meet of the people interested in being part of a community around homelessness in SA. I was excited about it, but got compressed with admin at the end of my day, then had several small emotional shocks, and by the time we’d made dinner and sat down to talk I was feeling very discouraged. So the catch up turned into something very different from what I had planned.
We talked about the challenges of trying to be part of something new, of the disillusionment, the old wounds from every other project we’ve been involved in that went bad, the anxiety that too much would be asked of us, the confusion about how to best meet needs, the need for bigger picture thinking to link our little concern back to huge human rights issues of poverty and so on, the sense of being overwhelmed by a crisis we can’t fix, of a deep discomfort with the usual way of doing these things – board meetings, roles, subcommittees. I cried. We laughed. We shared and connected as people. From the mess, confidence emerged, clarity emerged, a path forwards, a sense of equality and team and closeness. I reflected and captured the themes, the way I’ve just been taught to in the facilitator training, but not detached: with tears on my face. As one of them. My friends are so beautiful.
And I came away that night feeling deeply moved. Humbled. Part of me that observed the growth, the shift from hopelessness to calm hope, was looking at why it came together, as we always do. What are the principles, the values, that underpin it? Why did it work and how can I capture that for other people to learn and experience, for inclusion in my model about services with heart? For the first time I felt a sinking sense of futility. Maybe it’s simply not possible to capture such an experience in a manual or model. Being human is so… messy, unpredictable, beautiful, how can it be fitted or adequately described?
Then a sense of peace came over me, to let it be what it was and drink from it and rest in it and accept that I cannot count the stars. There will be tomorrow night for star gazing, and the night after, and after that. Right now to accept the gift of a group space that was human and safe and healing.
Something beautiful happened after they left. Our researcher part; brilliant, detached, driven, woke up. She sat trembling with Rose and said it was like having a heart put in her chest for the first time. She could feel our young ones inside her, could hear them as a kind of distant chatter. She inhabited the body and found emotions spilling over. She held hands with Rose, feeling every sensation and feeling the joy in it, to be able to feel touch, the yearning for the warmth of another. She has never lived in her body before, never eaten before, never felt a desire for human contact, never felt strong emotions, never been moved to poetry.
She felt like she had woken up. Every sensation was strong and clear but not raw or overwhelming. She felt like the tin man who had been given a heart, or found it rather, inexplicably alive and red and beating in her chest. Rose was a good midwife for what was being born, attentive and attuned. Rose suggested food to a part who never eats, no matter how many days she’s out for. She turned away from chocolate in disgust but accepted a mandarin.
Peeling the leathery skin and smelling the sweet pungent oils on her fingers was magic. It tasted sweet and mild and watery, bursting with juice in her mouth. She ate every segment, slowly, tasting everything. Then she lay her head on Rose’s breast and listened to her heart beating. Rose spoke with her gently.
She asked Rose if she was part of this family too, if this was her home, her body, if she’d done enough to deserve it.
And she listened to Rose’s heart beating, her head going gently up and down with the rhythm of Rose’s breathing. She thought to herself that Rose was a sea and she was a tiny boat bobbing with the waves, and felt delight in thinking this, in feeling a poem.
And then we slept, deeply. Today we’re going to move slowly, listen to soft music, work on our tax admin. Life is good when nothing turns out how you planned or expected, when you’re not in control and start to find that’s actually better, richer, stranger, deeper. There’s a lot of love in my little house, in my world, in my life. Something very beautiful is happening here.
So, at the recent Service Integration Conference in Pt Lincoln, I was explaining what I do and finding that there was great enthusiasm for my networks. Someone asked me if I had written my model down yet. That night I woke after 2 hours sleep with a lot of the model in my head wanting to be written. About 8 hours of writing later I had the first draft. This is not exactly what I was expecting to come from the conference with! I’ve shown it to a few people and received a really warm, and also valuably critical response. I also have a friend and mentor on board who thinks ‘bigger picture’ like me and is keen to develop the model with me. So that’s becoming a new key project I’m working on. Here’s a little more about it:
Services with Heart
I’m developing a model of service design, delivery, and export, with a particular emphasis upon mental health system reform but broader applicability to business structures. The focus is on creating systems that are ethical, humane, and sustainable. It’s informed by various areas of learning including Systems Theory, Fundamental Human Needs, The Peter Principle/Pyramid, the WHO model of mental health service delivery, Human Rights, Healthy Multiplicity/Pluralism, and Culture as a primary means of idea transmission. It is intended to be scalable, adaptive, self-exporting, capable of being dismantled to smaller components, and testable. I’ve written the first draft which is Phase 1.
I’m currently in Phase 2: the research and development phase, gathering data on the value and issues with existing models, with a particular focus on causes of the common declines of useful and heartfelt services – we are good at starting valuable services but there’s a significant issue in the way they grow and key areas of common entropy that threaten the continued existence of the service, or their continued usefulness and quality of service. I use my existing networks as living organisms that both test and inform the model in practice. I’m currently gathering support for a stretch of Qualitative research through interviews with people who use or work (or have used or have worked) in services.
- making sense of this data and building draft 2 of the written model.
- constructing several pilot programs in different high needs areas to research and evaluate the model in action.
- reflecting on this evaluation and using it to adapt the model.
- developing at least two programs in consultation with independent, existing organisations, one in development and one at re-evaluation of the existing service.
- researching and evaluating the model’s exporting capacity in these projects.
I expect this plan will also change and adapt through the model development! 🙂 I’m hoping the end result will be a useful way of creating systems and organisations that function as much healthier organisms with much more intelligent feedback structures, and far better cultures in which people can learn, work, and receive support.
How you can help:
- Support Me emotionally, practically, or via donations
- Respond to Call-outs when I am looking for people to interview
- Help me develop qualitative interview skills
- Look for funding or study opportunities – this could be a Masters or PhD project in Public Health but I have few contacts in the academic world
- Take on a role in any of my Networks to free up my time