22 weeks pregnant

I’m on the upwards swing of my mood cycle, and enjoying it immensely. I have DONE things and FINISHED things and I am back for a little while in the place where hosting an art exhibition actually seems like a good idea. This is unlikely to last so I am getting as much mileage out of it as I can. 🙂

Last week I learned that Centrelink (Australian welfare) had given me until today to gather a very important assortment of supporting documents from individuals and organisations. Considering the Easter long weekend knocked 4 business days out of the already tight timeframe of one week, I have been a very busy person. It’s like war, really. Of paperwork. The most stubborn and well informed person wins, if you don’t starve to death or beat your own brains out against your desk in the process. At least, that’s my take on things. So today I uploaded a stash of documents and I am hoping that I’ve made some pencil-pusher somewhere very happy and they can photocopy them in triplicate and file them all to their heart’s content. I’m done!

Yesterday I picked up a second big collection of prints for my upcoming exhibition and spent the evening cataloguing them and filing the originals safely away. Very time consuming process, but also exciting and satisfying! They are sooooo lovely. I am very excited about showing them to people. And I’m hoping like crazy that my catalogue will make re-orders much easier for me, and adding new information a simple process… please?

I was recently introduced to trello.com and I’ve trialled it this week to help me keep track of my various to do lists… I am managing the household admin for my family, a lot of admin for our amazing teen, everything for my exhibition, and my own personal stuff that needs doing. I’m loving trello. Managing multiple projects is much easier when I can update and modify things online instead of endlessly rewriting my lists as they get harder to read over time. I am taking on admin better than I ever have this year, I’ve accepted that it’s just going to be one of my roles in my family and the faster I adapt to that and the more skills I develop the less stressful it will be. There’s still days I want to set my desk on fire, of course, but I am delegating more and accepting that my fledgling organisational skills are needed and necessary and help my family run more smoothly. I’m also finally counting the admin as ‘housework’ and not double loading myself trying to make sure I do lots of that too- I think growing up it wasn’t treated as a real thing that actually took time and effort and skill, like lots of the things women traditionally did for their families. Repositioning it as important (and something no one else wants to do) and acknowledging that it takes dedication on my part is helping. We keep tinkering with new structures for housework and bedtimes and homework and sharing the very small space we live in now there’s three of us here and bit by bit I feel like we’re muddling our way towards approaches and systems that work for us.

Pregnant still at 22 weeks now. Bubs kicks and does back flips and wriggles around every day, mostly just a nudge here and there, but sometimes a good hour of frenetic dancing I can’t sleep through. It’s pretty awesome to have that constant reminder they are alive. Both Rose and I are still struggling with pretty intense anxiety about them, personally I feel almost obsessed by my fears about having a stillbirth. I still haven’t heard from my midwife despite many phone calls and messages left for her. I have a letter from the hospital telling me she will be in touch sometime, and reminding me that until I have that all important first meeting I’m not officially in the program or allowed to ask for support from them. So irritatingly I’m trekking off to my GP for hand holding and advice about horrible itching (which can be a sign of important things going wrong, or can just be my usual unhappy skin being extra unhappy) and so on. I know having a midwife doesn’t magically make anything safer or better but as the weeks go by it’s getting harder not to resent not having her on board or take it all personally or feel a bit overwhelmed by the fears of something glitching with my health and being kicked out of the midwife program anyway. There’s a whole lot of things I can’t control and won’t be given a choice about, and having that restrict any further is a possibility that feels suffocating.

Health wise I have a lot more energy, thankfully, and the nausea is much rarer. Food aversions are in full force still and unpredictable. Cravings are starting up, so far I’m fascinated by coffee which is unusual for me. I’m restricting myself to 2 cups a week but those I am very much enjoying. Possibly linked to that is that the fibro pain levels are high, and my mornings and nights are nasty. I can barely walk most evenings due to severe back pain and uncooperative nerves that don’t want to bear weight on my legs. Mornings I wake up feeling like I’ve been kicked a few times by a horse. My life currently puts deadlines in front of me that require I drag myself into the world of the living and make things happen. Once the deadlines have passed I usually need some days of seriously not adulting very much at all to recover. Tomorrow will hopefully be one of those days.

Tonight, I’m loading up an online game to reward myself, and in the background I can hear Rose singing our stressed teen to sleep. I adore my peoples. ❤

New prints for my exhibition (this is awesome)

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Yesterday, I collected about half the prints for my exhibition Waiting for You. Eee! I have discovered that there are many differences in the way printers handle things, even when using the same place. If I haven’t specified something each printer has a slightly different take on things. Which has made me realise that I need to be keeping much better records (ie, any records at all) about what I’m doing so that I can reorder items easily and see what’s going on with my collection.

So the other thing I’ve done is started my art catalogue. It’s hard to find out how other artists do this, but for me I’m putting everything into an excel spreadsheet, and coding each artwork with a number, and each print work a corresponding but unique number too. Then I have a folder for each artwork with certificates of authenticity and descriptions for when its displayed other bits and bobs related to that work. Most important in the folder is the master document that corresponds to the catalogue number and name, and contains all the specifics like the size of the original and exact details of any prints I’ve ordered…

Between these I can easily see what’s going on with that work, when I made it, if I still own the original, what has sold and what hasn’t (for stock taking) and I can easily reorder something. It’s slow and painstaking work, but I’m also finding out very satisfying. Seeing my work in a new light – just how many exhibitions I’ve been part of and work sold.

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Today between errands I’m working on price lists and trying to figure out how I’m going to frame things when I’ve run out of budget. First self hosted solo exhibition means going through the creative process steps 1-6 around once a week, if not once a day. o.O Hard work but satisfying.

20 weeks pregnant and date night

Half way there! Woooooo! Rose and I are out on our first date night in several months (I’m waiting for her to come back with food, and taking the opportunity to blog), our teen is hanging out with friends, and all is briefly right with our world.

There’s been so much going on this week and a lot of it hard or sad. Rose has had a death in her family which was quite sudden and very sad. Friends and family have supported us with some other tough situations and difficult admin, which has been so appreciated.

But for tonight we’re at a Bowie evening with ice cream and taking some time out to hold hands and not problem solve anything. ❤
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Our bub is growing well – we had our important morphology scan this week and everything was looking good. Rose was thrilled but I went into a weird headspace with the words from every stillbirth or late term loss I’ve read about ringing in my ears ‘everything was fine, we don’t know why they died’. Sometimes you just don’t react the way you think you’re going to, and it’s a jangly, confusing place to be in. But bubs is healthy and big and moving around every day. We have a ritual every morning and night where Rose feels the bub moving and talks or sings to them. Whatever else has happened, it’s a good way to bookend the nights and days.

Precious growing family. ❤

You’re Doing It Wrong: Criticism Fatigue and Peer Work

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 –

  • denial
  • 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

 

Anniversaries of loss

Today is the one year anniversary of our first scan with Tamlorn, the one where we found out they were not okay and we would most likely lose them, which we did. I wrote here on this blog on March 13th in 2015; Some days are just sad. This week, Rose and I celebrated 3 & 1/2 years together. Rose has had a couple of anniversaries of miscarriages recently. Later this week we will have our morphology scan to check the health of our little froggie. Today I learned that another of my lovely friends on the other side of the world has recently suffered a miscarriage too. So much. Everything overlaps like currents in a sea.

I am creating my first self hosted solo exhibition and some days the doubts overwhelm me. I’ve learned to stop working on any artwork for a day or two at the point where I’ve come to hate it. Putting together a whole exhibition on a theme is new territory – exciting but also new. Mortifyingly exposing and personal. An exhibition about grief and loss feels like the strangest birthday party I could possibly arrange. And yet… it also feels right.  There’s so much grief in the background of my life at the moment, under the surface, forming the soil from which my new family is growing. I’m working on new artworks to balance the exhibition and they are a fitting way to mark these painful anniversaries that come towards me like trains, and slip past me like leaves in a river. There’s not enough time in the world to weep all the tears, instead they flow quietly from my brush in a corner of my lounge room late at night.

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A sample of an ink painting I’m working on for the exhibition

And the strings of heartbreaking stories like strands of pearls that unfurl in the threads following declarations of loss call to me. Some days I struggle with feeling my exhibition is silly and pointless. Then I’m reminded so many people have suffered this way, without acknowledgement, without funerals, silent and nameless and secret and broken.

So, it’s a little thing I can do in a big world full of hurt. Make a place where we can remember, where the grief is shared and public and accepted. It’s not much in the big scheme of things, but it’s something I can do, and maybe those who need it will find it.

19 weeks pregnant

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Whoo hoo! Made it this far. I’m getting big and lugging around a tummy and breasts like squishy melons. The baby is moving and we can feel it now, morning and night in bed when I’m settled and they wake up. I can’t feel much in my tummy yet as my placenta is in front, but gently pressing with hands it’s easy to find them and feel kicks and wriggles. It’s the most wonderful thing in the world.
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I’m feeling a lot less nauseated lately, the fibro pain and fatigue are pretty bad but it’s really nice to be able to eat again most days. Home life remains very busy and and at times intense with emotions running high, but I’m finally making headway on the load of admin, and it feels like the crises are spacing out a little more as we find some good supports and resources. Although there’s been lots of stress, there’s also been some huge upsides for me. My household has gone from 2 to 3 – soon to be 4! – and it feels like everyone is adjusting to the change really well. I’m building a whole new relationship with our lovely teen where I’m needed and valued. I’m feeling a whole lot less scared now about being a parent or trying to be Mum and an artist. The pregnancy is far enough along that most days I feel that it will work out okay. I’m grounded in the present and have a useful role. My exhibition preparation drags my attention away from too much investment in everyone else’s needs and plans, and it’s coming along well. I have a sense of hope. My tribe is full of generous, caring people who are helping us carry the heavier loads. Life is good.

This week I did a print run of Welcome Packs from the DI, and folded and collated them all. It felt good. The online discussion group is still going and I’m starting to feel really proud of myself and especially the other admins who kept it alive through my severe exhaustion last year. I kept having to talk myself out of closing down the networks because I felt so burned out and discouraged. I’m glad I didn’t.

I feel like I’m coming out of the shadows and into the sun. My mind is waking up, I’m reading psychology books again, feeling good about my networks even as I’m sad and frustrated I can’t grow them at the moment, and starting to investigate options for paid work and study again down the track. Still hoping I’ll find the support I need somewhere in academia to help me open the doors to credentials and employment. Hope goes a long way.

Melting Down

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.

 

Waiting for You Exhibition & Artbook Launch

Waiting for You-001

Everyone is invited to come and celebrate my birthday this year with an exhibition of my art and the launch of my little artbook Mourning the Unborn! The theme is pregnancy, loss & motherhood, so come and meet the artist and view beautiful, sad, and joyous artworks. I will share the unique experiences behind the creation of my artbook Mourning the Unborn.

Click here to listen to a beautiful interview on Radio Adelaide about my experiences and this exhibition.

There will be books and prints available to buy and cake to share.

The Opening Night (ie when cake is being served) is on
Friday the 22nd of April,
The Box Factory, 59 Regent St S, Adelaide – this is a wheelchair accessible venue
(map)
starting at 6pm

If you are on Facebook the event details are here. This is a public event, open to all.

The art exhibition is available to view between April 19th – May 19th on Mondays to Fridays between 4-6pm.

For those who cannot attend in person, I have prints and the booklet for sale in my Etsy Art Store.

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Dogs are great patients

Zoe is still living her new life as a mobile, destructive lamp. The vet dressed her leg a week ago, but didn’t tape down the wound dressing under the bandages, so after a few days everything had moved around, and I had to soak off bandages that were glued into the scab and redress it all. Fortunately a friend took me to a pet first aid class a couple of years ago so I have a fully stocked pet first aid kit. Her wound was healing brilliantly until a few nights later when she discovered that she could with much effort, curl up in just the right way to lift her cone over her injured leg. Overnight, she chewed off and ate the dressing. Glorious!

As it was healed to a scab I decided to trial leaving it unbandaged and removed her cone. That worked well until she was unsupervised at one point, when she chewed off the scab and licked open the wound again. Argh! She’s always been difficult at letting things heal, and I have numbing ointments and so on from the vet from previous mild injuries in mostly futile efforts to get her past the ‘it’s almost healed so it’s itchy’ stage that inevitably sets us back. The only thing that reliably works is stopping her access to whatever is trying to heal, if at all possible. She is wily.

So I cleaned and sterilised and redressed her leg with a lot more sticky plaster over everything to keep it in place, and put her cone back on. We all got home from a birthday party around 11pm to discover that somehow she had got her cone off, chewed it up a bit, and had another go at her leg. The sticky plaster had slowed her down quite a bit and she’d not been able to get into the actual wound. Win!

Not so much. She had been able to tear off the upper end of the dressing, and when she couldn’t get any more off she instead dragged her leg along the ground repeatedly until the dressing filled with dirt, opening the wound again and stuffing it full of dirt too! Argh!

I did not kill her on the spot. I am a good dog owner. I called her a lot of names in a mostly calm tone of voice, cut off the dressing, cleaned every last scrap of dirt out of the wound without throwing up, irrigated, disinfected again, redressed with extra sticking plaster, and stuck her back in her cone a little tighter. So far so good.

Some days I think owning a bull terrier cross is good practice for parenting.

18 weeks pregnant

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Whoo hoo! I have quite the bump now, but have found that when I dress like this (the pants are about 3 sizes too big) it disguises it well and I look alternative/stroppy enough with my head sides shaved that random people don’t touch my tummy. This is making me very happy! I hadn’t realised how quickly the touching issue was stressing me, so I’m wearing bump revealing things at home or with friends where I can feel all rotund and earth motherly in peace, and clothes that hint I might tear off sometimes arms if they touch without permission in public, and I’m feeling so much more relaxed. 🙂

The Quickening is happening… This poetic term describes being able to feel the baby move – this occurs when they are big enough and there’s a reduced pond of amniotic fluid around them so they bounce off the walls so to speak. We are getting this! It’s very hard for me to feel in my tummy as my placenta is in front of the baby and blocking everything, but particularly at night when they are active, a hand pressed gently in the firmest area is usually rewarded with little flutters and taps.

There’s been a lot of stress around lately like rapids to navigate between calmer stretches, and one of the ways it’s been expressed is through nightmares. Rose in particular has been suffering from terrible dreams about death and loss, and by mid last week was getting swamped with fear about this baby. This time last year Tam stopped growing but we didn’t know that for several more weeks until our first scan. The fear that something is wrong and we just don’t know it yet can be paralysing, and a couple of tiny pops and bubbles and wing brushes from inside that might well be all in our minds is not yet reassuring. So kindly one of our best friends paid for an extra scan and we got to see the baby again, all alive and doing flips and waving at us. We were sitting in the waiting room beforehand, feeling that awful mix of very stupid but also half convinced that something was terribly wrong, telling the little one that later on the expectations will jump a bit, but right now all we want from them is a heartbeat and a wriggle. They certainly did that and we’ve been able to breathe again while we wait for kicks to be stronger and the next reassuring scan at 20 weeks.

In the scan they were positioned lying face down and very uncooperative about being looked at or photographed. So Rose sang ‘Somewhere over the rainbow’ to them and they turned around to listen and gave us a couple of photos. ❤

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I’m enjoying looking after our family and spending time with friends. We have had the most wonderful rallying around us, as we’ve taken someone in our tribe is embracing them too. People are helping us with food, and money, and car repairs, and driving places, and debriefing. We’re not alone, and although I’m still waking up crying because I’m not studying anymore and my goals around my degree and work that I’ve been putting so much effort into for so many years feel like they are further away than ever… I am finding myself surprised by how fulfilled I feel to be looking after my family. My mind is clear, I’m efficiently coping with several hours of admin a day, I’m asking for help and setting up routines and doing the intensive support that will help us all get through the intense crisis phase and into calmer waters. And when I have a moment here and there, I’m working on my exhibition and feeling quietly surprised that anyone else is interested in it, and a tiny glow of hope that I’ve created something people might connect with or find value or peace of some kind in.

Hard work and lots of love

Today was madcap. Things have been moving so fast lately with an extra person in the house and all the scrambling to adjust and adapt that come with suddenly caring for a teen. We are working hard to keep stress levels as low as we can, which means riding out big stress spikes for all of us every few days as the wheels fall off something, and then coming back down to a calmer space in which everyone can think, plan, and more importantly – digest food and get to sleep! I feel really proud of us because I think we’re doing really well at this. Some of those skills I’ve worked so hard on about navigating personal crisis seem to be working well for helping our family deal with the ups and downs too.

Today, Zoe had a gash on her leg that looked bad enough to possibly need stitches, Rose and I dropped our van in at the mechanic to have the radiator replaced and got home in our little car only to have it die. A friend kindly came over so we could get Zoe to the vet using their car, we cancelled what we could for the day, sorted out dinner and went off to an important appointment together after school. On collecting the van we discovered that replacing the radiator seems to have wrecked the air conditioning – something we were warned might happen due to some damage probably caused by a front end impact in the van for a previous owner…

Zoe got away fairly lightly with a bandage, cone of shame, and meds. We’re trying to arrange a tow for the car that’s not running at all and cancelling non essential appointments for the next few days of hot weather. At various times today we got heat fried, overwhelmed by the costs, teary and tired, and worried about the baby. It was really hard! But we’ve spent this evening in front of the air conditioner with dinner and ice cream. Homework is happening, there have been board games and hugs. I’ve written a list of the most urgent things we need to get done over the next few days. Zoe has taken her meds. Everything is okay again. Tired, a bit tattered around the edge maybe, but okay.
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On the upside, this pregnancy has really started whizzing by! We’re up to 17 weeks now! That’s amazing. I’ve gone from knowing exactly how many weeks and days I am all the time to missing whole weeks while I’m focused elsewhere. (Rose however, still knows exactly what day we’re up to and what size the baby is all the time) I’ve also stopped worrying about how we’re going to cope with a baby and if I’m going to be an okay parent and all the terribly consuming first parent anxieties that felt so overwhelming only a month ago… It’s overwhelming but it’s also wonderful, delightful, deeply moving. Our tribe has such amazing people in it and I love each of them. Opening our home to someone means they are very special to us, very loved and trusted to be safe and bring their own light, their own heart into our family. We are enriched and fortunate! Amazing and precious experiences are unfolding. Just because it’s hard doesn’t mean it’s not very worth it. ❤

Everyone’s invited to my birthday

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I’m not that great at birthdays, to be honest. I often get depressed and confused, and spent too much time wondering about the state of my life instead of arranging a lovely celebration. Choosing who to invite fills me with gnawing anxiety in case someone feels left out, and trying to word “please don’t bring gifts if you are broke/forgot it was on until an hour ago/would find that stressful BUT equally if gift gifting is something you love and part of your love language I will not be angry/set them on fire/refuse to speak to you again if you do” so that it fits on an invite gives me a headache. The event itself, which I find mildly terrifying but slightly less awful than not having an event, either falls to my long-suffering partner or friends to conjure, or in a last minute fit of bewilderment gets sprung on my nearest and dearest with anything up to 6 hours notice.

This year will be different! With encouragement from Rose, I am working on a project I have been thinking about for a while – I will be hosting an art exhibition for my birthday instead of a party. It will be exciting, give me something to focus on, justify the expense and time, give people things to look at that are not me, be open to everyone who wants to come, and there will still be cake! Win-win.

I’ve chosen the topic of pregnancy, loss & motherhood as that’s been a huge focus over the past few years and I would love to showcase the artworks. My artbook Mourning the Unborn will also be launched and available for sale, as will prints of the art. I am working hard on the second draft of the artbook at the moment, which will be my first ever publication! I have also put in a new order for 24 karat gold leaf and look forward to showing my beautiful hand gilded prints for the first time!

The Opening Night (ie when cake is being served) is on
Friday the 22nd of April,
The Box Factory, 59 Regent St S, Adelaide
(map)
starting at 6pm

If you are on Facebook the event details are here. This is a public event, open to all.

The art exhibition will be available to view between April 19th – May 19th on Mondays to Fridays between 4-6pm. The venue is wheelchair accessible.

Pregnancy & Grief

The most wonderful news came in last night – the laws here in South Australia have been changed and just in time for Rose and myself. This means that she will be able to be on our babies birth certificate and has full legal recognition as their parent, alongside me. We were so happy we cried. It makes such a difference for our little family.

I am 15 weeks pregnant now and my bump is too big to fit my jeans or a lot of my skirts comfortably any more, although I still weigh a lot less than I did at the start of this pregnancy. I am experiencing a little less intense nausea and getting about 2 good days out of every week, but the fatigue in particular is still severe and demoralising. My world is home at the moment; I do housework, and household admin, and debriefing for people, and drive people to appointments when needed. A lot of time is needed to rest. Eating is still a bit tough and often takes some time to recover from. I’m hoping that as the pregnancy progresses I might start feeling better and better. Rose is busy and productive with her full time study, and the teen staying with us is a studious school student, so I feel a bit lost without a project of my own, in that rather unglamorous and unrecognised place of spending my health on whatever needs doing I can manage around the edges. I’ve been getting very teary and distressed at the prospect that I might not make it back to paid work or wind up with a degree or a career despite all the work I’ve done towards those goals.

Rose is such a help. She doesn’t get my distress personally – her focus is on being a Mum and that fills her world. I always wanted kids and work outside of the home and I’ve been so ill for the past 6 or so months I’m starting to lose hope. She was up with me until 1am last night while I just cried my heart out. It’s a madly intense grief and it’s all tied up with self worth and a sense of significance and belonging and connection and making a difference in the world… I don’t feel any sense of judgement towards others who need support or are sick, I’m just struggling to navigate it myself. It’s a little better than it was 6 months ago when it actually felt like if I couldn’t figure work out and find a way through I couldn’t survive. Planning a baby has kicked my sense of wanting to financially contribute to my family into overdrive, far beyond my capacity. And where pre-Rose my focus was strongly about contributing to the world – doing something of value whether I got paid or not, with a family I suddenly also needed to bring in money. Those are very difficult values to pair up at the best of times. I feel like I’ve been mangled between them.

It’s become such an obsessive focus for me that I’ve been unable to do other things that I love, like paint, because it doesn’t even feel like I can breathe until I figure this out and am on track for a paid job. Combine that with very poor health and that’s a long time of beating myself up and not breathing. I was chatting with a friend the other day who was angry about someone who was breaking the law and being horribly irresponsible and I mentioned that I was not feeling like I was being very responsible at the moment. She looked at me oddly and said that being on disability support wasn’t criminal or irresponsible. I know that but it actually kind of surprised me too. The kind of urgency I feel is as if what I am doing now is illegal and I must find an alternative. I know it’s not rational but it’s incredibly difficult to put the brakes on it.

I find it so much easier to be brave about my mental health than my physical health, which is the reverse of most people and probably partly a hangover from having all my physical health issues treated as psychosomatic for so long. To talk about having a child while on welfare, in my culture? It takes more courage than I have most days. I get attacked, like everyone who’s poor or queer or has a disability does when they want kids of their own and it’s just too much to bear a lot of the time. Too public, too vulnerable, too much vitriol from too many directions. All spewing the same message of worthlessness, as if I haven’t heard that enough in my life, felt it enough. In some ways being a parent feels like crawling back into the school yard to let the bullies have another go at me. See if you can hit me where it already hurts, some of those wounds aren’t very healed still. I feel an intense grief to be where I am, such a sense of lost years and lost health, so much pain and chaos. So many dashed hopes and so much hard work.

All my accomplishments start to twist in my mind and what I was once proud of, like my extensive voluntary work, I start to feel ashamed of, that I was foolish and trusting and exploited. That I somehow fell short being good enough to pay. That I trusted the wrong people, made the wrong decisions, invested in the wrong career paths, and cared too much about keeping my precious ethics intact to deal with the real world of work – which is that I am nobody and have no power and no voice and should simply have put my head down and done whatever was asked of me. My overinflated sense of personal responsibility and grandiose ideas are the real problems. My sense of connection to and trust in other people twists too. I feel very envious at times, and in some cases very burned and bitter, in others just overwhelmed. It’s a painful place to be in.

One thing that has helped a lot has been reading Mary O’Hagan’s memoir Madness Made Me about her terrible years of suffering and her path into advocacy and activism. Maybe because she makes herself so accessible, I was surprised that her road into paid employment was simpler than I thought it would have been. Maybe she was gutsier than I’ve been about pursuing grants, but I could see for a moment that she was in a time and place where there were opportunities for someone intelligent, passionate, aware of the dynamics of power and with a capacity to doubt all the simple answers. It unhooked me for a minute from my frantic soul searching to figure out where I’ve gone wrong or what else I need to do to try and make it across the divide of activism and into paid employment. Some of the answer here is being in an environment where the opportunities are present. I have a lot of opportunities around me and very few of them are paid, and none of them are employment or regular work. Some of the answer too is that most of the other mental health peers I admire so much and have been trying to emulate haven’t had to deal with the multitude of issues I’ve been hit with such as severe physical illness and years spent as a the carer for other people. Many have experienced one or two of the batch but being hit with childhood bullying and abuse, a repressive religious environment with queer sexuality, family violence, severe physical illness, homelessness, years of intensive caring, major mental health challenges, poverty, isolation… It’s been a complicated life.

Some days it helps to remember that for someone who has come through what I have, still being here is a success. Not having died when I first wanted to at 10 or at 18 or 23 or 27 is a huge deal. I accidentally burned my wrist on an oven tray cooking this evening and it was very triggering because my wrists were often the target of my desire to self injure – such an intense, shameful, private drive that I spent many years learning to understand and dismantle. That’s something I’m proud of too, and it’s something else I can talk about openly and with compassion when I’m connecting with someone else in that kind of pain. It matters that I can do that even if I don’t get a badge with my name on it and a pay check. I’m not useless or lazy. (I’m so scared that I’m useless or lazy)

It helps to remember that I’ve brought things out of nothing and made things that help ease pain. I’m so, so beyond sad that I haven’t been able to grow them bigger, that the DI is just a little website and a few brochures that the spiritual-cause people find too clinical, the clinical and diagnosis people find way too maverick, and the rest find too mainstream. I know it annoys in some way almost everyone connected to it because trying to find a middle ground between all those perspectives is irritating to everyone. It seemed like a good idea anyway, a safe meeting place for everyone. I don’t know. I know that some people found it helpful and if it really is a good approach I’m sorry to everyone else that I couldn’t get the message out any further or louder and that it will probably die with me. I’m just too tired to do much more. But all the little things count too, right, not just the movements that gain momentum and change the world in a big way, it’s also all the little pebbles bouncing down the cliff years before the avalanche that makes the big difference.

That’s another pincer – that what I’ve dedicated my life to wasn’t worth the cost, or that it is important, but I can’t take it any further anyway. Either way I’m swamped in grief.

I want everything to be better before the baby gets here, in an insane way I know I can’t achieve. I want the house to be organised and the back yard to be planted and clean of poop, and to have resolved my work dilemmas (do I have enough spoons to be a part time receptionist and a Mum? How can I know? I know I don’t right now – how many months after the birth is the fibro likely to still be severe? Is there any point in hoping anymore?)… I want to be a better person and eat less chocolate and watch less TV and be calmer and cry less and… sigh. It’s all so painfully vulnerable!

It’s not enough to stop living while I try to force myself through this brick wall. I’ve worked so hard to be here, and it’s not my fault the wall is so high. I need a hand over it and I haven’t found one. I have to be okay with that, at least for now, and that means letting myself grieve, and it also means going back to the things that give my life meaning and joy. If I can’t do ‘real work’ it’s okay to spend time on my voluntary work. It’s okay to make art even if I’m doing it while the rest of my household is out doing real work. If I can’t find a work related project then I’m going to make a life enhancing project I can work on on my better days and get excited about and feel connected to the world with. (hold on, my love, one day there’ll be a place for us) Not so many years ago I was friendless, suicidal, recurrently homeless, terrified of my multiplicity, and deeply wounded. Not so many years I couldn’t shower without assistance or make it through the shops without a wheelchair. I remember a time when my pain was so bad I would scream myself to sleep. Here I am, fattening with a little dragon wriggling inside me, loved and safe in my home and family that’s suddenly 3 of us and waiting on the 4th. I refuse to keep suffering to punish myself for not having recovered further and to motivate myself to reach that one last big goal I can’t seem to secure. It’s okay to fail, it’s okay to fall, it’s okay to hurt about it, and it’s okay to build yourself some kind of compassion and forgiveness out of all that blood and broken bones. It’s okay to live anyway.

What do you do when the dreams burn down? What I’ve always done, mourn and howl and dream new dreams. When the bullies make me bleed I paint my face with it and refuse to become one of them. I find my warrior and call them out on it. I run into the wilds where they can’t trap me. I’m 15 weeks pregnant and sometimes now whole days go by where I’m not afraid the baby will die. It’s the most wonderful and joyful thing, especially last thing at night when I’m lying in bed in the quiet and Rose rests her hand on my bump and all the world is just the sound of our breathing and the warmth of our skin. It’s humming with usefulness and competence on the good days, making phone calls, mopping floors, paying bills, listening to people who need a compassionate ear. And it’s pain and vulnerability, ugly and awkward and embarrassing, it’s snot dripping from my nose and making my sinuses ache, and feeling obsessive but unable to let go, and getting cabin fever from another day aching and hurting on the couch, and getting afraid that maybe I’ve complained too much on Facebook or not said enough to my friends how happy I am to be pregnant. It’s waiting and waiting and waiting and following all the instructions about forbidden foods and drinks and worrying that lying on my back will reduce the blood flow to the baby and going to mummy events and feeling weird and alienated and icked out by the overwhelming pink and pastels and brutal birth stories. It’s strangers touching me and not being able to reply to messages despite feeling guilty, and wanting to make art but feeling like it’s in a locked room and I haven’t done enough to earn the key yet. It’s wanting to but still not being able to talk to or write to this baby directly.

15 weeks pregnant is not a stretch cream or baby formula commercial. It’s life and it’s messy and some of it really, really hurts. And I’m sobbing with sadness about my career at the same time that I’m overjoyed beyond words to be pregnant. It’s feeling useless and horrible on the bad days and proud of myself for making sure my people have clean clothes and for navigating difficult conversations well on better days. It’s not a happy ending, it’s not recovered, it’s not out of danger or no longer at risk.

It’s not without pain, but neither is it without meaning. It’s precious, and it takes courage.

Poetry in the Night

Today I had a root canal re-drilled and packed by my dentist. I did admin, made phone calls, cooked dinner. Adult mode, functioning mode, clear mind, to do list, one thing and then the next, daylight.

This evening I’m picking up the teen staying with us from their work because they finish too late for safe travel on public transport. It’s dark and raining a little and I didn’t want to get out of my comfy chair and do more things.

But now I’m here… I remember how much I love the night. The rain calls to me and I feel the day slip away from me like a dream. It’s beautiful here, the world shines and smells of wet earth. I think about a talk I’m going to give to some doctors about psychosis soon and how, if I can, I will try and hold the space and evoke a little of the night in it, bring them here. I think of how we talk about feelings and altered states in white rooms under white lights, dressed in suits. And I think about the strange people like me on the edges of the known world, feeling things in the night. I think of my friend who died alone with her face cupped in her hand. I think of Amanda Palmer touching my face as I told her about my friend who killed herself. Belonging is about feeling. It’s about the night. I’m whole here in a way I can never be in the day. I think about waking two nights ago to the terrifyingly familiar thought “Nothing makes any sense”, a lingering echo of my recent plunge into the void. I think of waking this morning from dreams of ecological disaster and wondering what world my child will walk and how long it will last. I think of myself birthing in the dark, face painted like I’m in a psychosis, sailed far into my own deeps, beyond shared understanding or common language. Naked and bearing down on the world, bringing whole galaxies of neurons into existence within a tiny new body for my lover to press to her face and gift with a name.

13 weeks pregnant

I’m 13 weeks pregnant and starting to have much better days between the bad ones, which is tremendously exciting. I’ve withdrawn from my Childcare Cert 3 as I am missing immunity to parvo and just don’t feel comfortable being around kids with all the illnesses while I’m pregnant. Fortunately Rose has immunity to everything so she can’t bring home anything dangerous. So it’s full steam ahead for her.

We have a new house guest this week, which was rather unexpected. A teen needing a place to stay turned up a few days before we were about to dismantle the bed in our second room, so the timing has been fortuitous! We’re not sure at this stage how long this arrangement will be so we’re preparing a little for all eventualities and keeping an open mind. We’re a bit startled to say the least, but the teen in question is lovely so there’s been fun times between extra admin and driving around. We’re adjusting as quickly as possible and tomorrow is their first day at a new school! Life is just full of curve balls.

Today was a marvellous day off and I celebrated by cooking pancakes for breakfast after a good sleep in. The warm weather and rain storms have been good to our garden and it’s full of life. Rose and I got our hands into some soil weeding and planting some new annuals in our strawberry patch. We also bought a white mulberry tree for the back yard! Once it’s bigger I think it will make a perfect living cubby house. I remember wonderful afternoons spent reading in the shade of a mulberry tree as a young person. 🙂 Life is rather wonderful.

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Our gorgeous hollyhocks that self seed through the garden

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My favourite colour hollyhocks

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French lavender growing rampant

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Princess Liliies

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Iris

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The new patch of annuals

My first book in print

I have just collected the prototype/artist’s proof of my first printed book and I am so excited! It looks even better than I expected. This is a printed version of the handmade art book I painted and embroidered last year. I have been working towards this for some time, hoping to create something that evoked the handmade, precious feel of my original, at least a little, but was a much cheaper option for people to purchase.

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There’s some small issues I’m going to sort out in editing before trying another print – particularly the loss of image in the centre as the booklet does not open flat. But I think in fairly short time I will be ready to put it up for sale here on my blog. The first!! Of many more lovely projects like this, I hope. 🙂 🙂 🙂

All is well

We had a scare recently, which has ended up fine. We took a little holiday; an overnight stay with friends out by the Murray River. It was a really good time but when we went to bed late and happy we found I’d had a small bleed. I’m glad Rose was with me because we were able to keep each other calm and get through the rigmarole of phone calls with not very good reception and issues with returning calls from doctors on helplines not reaching us and so on, without panicking. We wound up getting help from the local ER who reassured us they had supplies to help us if needed, and it was okay to get some sleep and see where things stood in the morning.

We were extra concerned because I have a negative blood type and our donor has a positive one, so anytime there’s a possibility of mine and bubs’ blood getting mingled I have to get checked for antibodies and given a shot of anti D to prevent me forming antibodies against the babies blood. We hadn’t known about this issue or we’d have made blood type part of our donor preferences because it does add a fair bit of stress! But, some things you learn along the way.

I talked softly to Rose and stroked her face until she fell asleep, then googled minor bleeds or small discharges of old blood and reassured myself they are common and usually hormones bothering the cervix rather than a miscarriage.

We were able to reach our own hospital the next morning who were wonderful and told us the window for administering anti D is quite generous, so have lunch with our friends as we’d planned and then come in. A couple of hours in hospital last night, and we were able to see our little one on the ultrasound screen and check their heartbeat which was good and strong. At first I was chilled by their stillness, but after a minute or so they woke up and have a little stretch and kick. There’s simply no better sight in the whole world than a wriggly baby.

We had to wait for the blood test results and there was a very stressed, teary woman in the waiting room with her guy giving her a hug. It was so strange and sad being on the other side this time – the last time we spent hours on that room it was when they’d told us Tam had died and we needed to wait to see a doctor. We both wanted to say or do something comforting for her but didn’t want to intrude either. We tried to throw sympathetic glances their way and empathised about the uncomfortable seats. I felt terribly awkward and kept getting confused and thinking we’d got bad news too and having to untangle that she was upset but we were actually okay. We came home in a daze of relief.

Today we were both tired as all the buried feelings wash out in strange bursts. I woke unsettled and alone because Rose had quietly got out of bed without disturbing me – usually she wakes me to kiss me goodbye. She was only in the lounge feeling sick and having taken today off child care placement after throwing up. Later as I cuddled her in bed she told me “Sorry your armpit is all wet with my tears” and I told her that sounded like a great title for a book of weird poems.
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Our little one protesting being woken up. 🙂

Joy in the Rain

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We are in our second trimester and the joy of being pregnant is bubbling over for Rose and I. We are starting to believe this baby will make it into our arms. It’s been a long, hot summer for us, swinging from one heatwave to the next, long stretches of days in the high 30’s or low 40’s where I’ve been sick, weak, exhausted, and stuck indoors for weeks on end. The weather is just starting to break and we’ve been having storms here, freezing rain, thunder and lightning. My beautiful love couldn’t resist and at 1 am went out to dance in the rain. When I finished throwing up dinner I caught this photo of her and snugged myself in a blanket to sit outside on the porch watching her and the lightning.

I’m getting windows of feeling well for a couple of hours some days at the moment. Rose has finished her last work contract and started full time study in Child Care which is making her extremely happy. The cooler weather is much kinder to me. Autumn is not yet here, but I can feel it coming. The garden is full of late roses and irises. We can turn off the air conditioning and open up all the windows and smell the wet earth and basil. My tummy is gently plumping and I sleep with a body pillow at night to ease the joint pain. There’s hope and friends and new books and lovemaking in the mornings. There’s joy again.

12 week scan went brilliantly!

Everything was fantastic. We got to watch the cutest, wriggliest little froggie ever while the lovely ultrasound lady took measurements and tracked their growth. Everything was spot on; they had fluid in their bladder which means their kidneys are working, the umbilical cord has the correct three vessels, we even got to see through the top of their little head and the little walnut brain in there. Wow.

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They moved around so much it wasn’t easy to get measurements and I had to keep wriggling my hips or laughing to jiggle them into a new position – the laughing wasn’t hard, Rose and I are euphoric. It was incredible to see such detail – watching them open and close their mouth, wave their arms, curl their fingers around their face. Their heartbeat was strong and fast, 153 beats per minute. Everything is going exactly as it should. Everything’s okay. 🙂

Finding new dreams

Today was a great day. I was sick for a few hours after eating each time, but that left me a few hours where I was up to sitting at my computer… And I have finished the prototype of my photobook based on my hand made art book: Mourning the Unborn. I’ve ordered the first test copy and it will hopefully be here in a week or so. Eee! Then for tweaking and editing and… I’ll be able to show you a finished photobook that’s lovely and simple and nowhere as costly as the original. 🙂

I am not good at the first time I try to do something. I feel anxious and overwhelmed and want to get it right and don’t like experimenting. If I have a hands on teacher I’m sorted, if I’m teaching myself it can take me a long time to gather the skills and develop the confidence to get my prototype off the ground. This drives me crazy and I really admire people who jump in and learn as they go and don’t worry about making it perfect first time. Once I get the first one out there though, all the brakes come off and I’m away laughing. The second of anything is a breeze for me, at least by comparison.

Soooooo, published books have been on my goal list for years. A photobook and a non-fiction self help book are so different I expect the first of each will be a challenge, but I’m determined to get off the starting block and Rose is keen to help me. I think watching me transform from puddle of sick misery to my familiar vibrant self has inspired her to help me find some project to work on in my better moments.

We had a lovely conversation about goals and plans for this year this morning and I’m a little unsettled but also hopeful and releived. I’m finally starting to be able to step back from my intense distress about not working (for pay) and supporting my family the way I want to. I’m accepting that currently I’m so ill it makes no sense to be applying for jobs. So Rose and I have been talking about projects I feel inspired by, that I can pick up and put down between good and bad hours or days, and that might develop into a small passive income stream that helps me feel I’m contributing.

Books/publications are one part of that, and the others we’ve talked about are an etsy store for art prints and so on, and instead of a birthday party every year (which frankly I’m triggered by and rubbish at anyway), organising a small exhibition of art work.

I wish things were different. But I’ve got to work with what I’ve got and where I am. At the moment, that’s very little health and a powerful need to be involved in some way that meets twin needs to feel I’m financially contributing and making some kind of difference to someone vulnerable or in a rough place. Focusing on that feels scary and liberating, and I’m hoping I can get some more of those bright moments when I light up and forget being sick to energize and inspire me through the projects. 🙂

For everyone who’s been patiently waiting for me find some way back from my misery, who’s supported me or sent me encouragement or let me know that in some way I’ve made a difference – thank you so much. You are brilliant and you help me feel like less of a failure. I so appreciate it. ❤

Into the Second Trimester

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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.

Keys to locked places

 

I’m 10 weeks pregnant and have been so continually sick that I’ve been unable to enjoy almost any of it. I get a good hour or half day here and there, but the rest of the time I am deeply miserable. The nausea is intense, to the point where I sweat, salivate, and tremble. Sometimes even the vibration of speaking will set off my gag reflex. Smells are intense and mostly horrible. The hot weather has left me weak and exhausted. 2 months of this has thrown me into a perpetual flashback of sick years where this was my life. It’s my nightmare – sick and needing Rose to do everything. Useless, exhausted, and depressed. Housebound, often bed bound. Joint pain, muscle pain, headaches. Thinking with sad longing of my old electric scooter. Visiting friends as long as Rose can drive both ways, and falling asleep on their couch anyway. I’ve been here before and the memories are so painful. I am so tired of being sick.

I know what it’s like to have an unborn child die, and I know that one of the things that burns is hearing women who are pregnant complaining about how difficult they are finding things like morning sickness when you’d give anything to be dealing with that and still have hope of a living child. So I don’t say much.

And I don’t say much because people love to tell me that what I’m going through now is only the tip of the iceberg, that the third trimester is exhausting, that labour is far worse, that chronic sleep deprivation and caring for an infant will make these days happy memories of vigour and health.

And I don’t say much because even my own lovely doctor wasn’t particularly sympathetic about morning sickness that doesn’t involve frequent vomiting, at least until she discovered my significant weight loss and realised I have been very sick. Then she told me that actually lots of women find the first trimester incredibly difficult, and it’s not uncommon for them to be in at their doctors in tears, ashamed and overwhelmed and saying they can’t cope after all and maybe they shouldn’t be doing this.

I don’t say much because I’m grateful grateful grateful and don’t want to lose this baby.

I don’t say much.

I, who have bared so much, find myself silent and stoic, head bowed, making bargains with the universe. If I accept this, will you turn tragedy aside from my family? Does the suffering make my child stronger? I have fought shaming and silencing in so many ways and yet here in a second pregnancy after loss, I find everything has changed. It’s such an effort to share this time, I stir myself from muddy deeps and swim oh so slowly towards the surface, weighted by dread. I fear attack, fear shaming, fear all those who believe that the world is just, that good people are taken care of, that fertility is somehow fair: an indication of boon or blessing or divine right. In my mind I can follow the tortured logic and understand people’s need to calm their own hearts but my heart doesn’t understand, doesn’t forgive, it’s just dark and thick tongued and wordless and afraid.

I didn’t just lose Tam, I’ve lost those beautiful weeks and months of heartfelt joy this time around. That calm certainty that things would be okay; all the stars in their right place and me in mine. (We think we are kind when in fact we are merely happy – CS Lewis) This time around the highs are followed by plunges into deep lows. We talk with qualifiers – if the baby comes, if everything works out. I find myself drawn to stories of tragedy with children and feel like I’m falling into a dark world I can’t get out of. Infants dying in the NICU, 3 year olds with cancer, 7 year olds who drown. I feel like I was so arrogant to think that if I did everything right, I could somehow bypass more savage loss. I could move out of the underclass, plagued by poverty, homelessness, and sickness into a bright ‘normal’ place where things like this don’t happen. That I’ve suffered enough and worked hard enough, earned my way out of more pain, as if life is about what we deserve. Isn’t that the illusion all hopeful parents have? That we can build a pastel coloured wall around our children and keep them from all harm? And when harm comes to your family anyway, the whole strange pastel mummy world seems so bizarre, such a fiction of security. We lie and lie and lie, and create these strange microcosms where nothing casts a shadow and nothing ever dies, and I cannot even breathe in them.

On good days I don’t just feel better, with the health unlocks all the memories of strength, hope, and vigour. I sing and play and work and find myself for moments in the sunlight feeling connected or excited or content. On good days I feel stronger than the bad stories, stronger than the fear and the sense of loneliness and cabin fever. On good days I feel like I will be my own kind of parent, strange and deeply loving, not squeezed into the strange mould I feel advancing upon me, I remember that there’s more than one way to do this right and that authenticity is more important than people pretend, and that some mothers climb trees too and understand both the lure and the fear of the backyard after dark. On good days I can breathe.

Most days, Rose sings to our unborn child, lullabies to quiet all three anxious fluttering hearts. Recently we lay naked in the summer night and she asked me to teach her a new song, something I loved. I thought of us the week before, driving to our first scan, making ourselves face this terrible laying bare of all our hopes and illusions. We sat upright in the car seats, that willing of the body to do what it does not wish to do. We sang to each other, tears masking our faces as we breathed in terror and breathed out our last courage. I sang songs by one of my favourite artists, Nick Cave, and so in bed I sang Into My Arms to her again. There in the warm dark, her fingers tracing my skin, I felt some shadowed part of my heart unlock and found a small sense of peace. A vision of myself rocking a baby and singing Cave rather than inane children’s songs to them in the small hours. It’s the first image of motherhood that exists in my mind beyond the fears of loss and the laughing tales of misery my culture gives me at every turn. I feel like myself in that vision, and in that moment I’m not afraid.

Another night recently we go to bed and I lose my grip on the crumbling stoicism and howl with a broken heart about so many things. How different this pregnancy is and how much I want to enjoy it and feel excited and connected to our growing baby. How deeply sad I am about my business failures and losses, and all the jobs I applied for last year and didn’t get, and the career that I so deeply wanted and have worked so hard for and now… realise that I might never have. Grief, grief like losing a piece of myself. My broken, frozen system, out far beyond all certainties and lost past the edges of the maps. All these dreams. She holds me, my love. She holds me and I weep onto her chest, she soothes me running her hands along my back as I shudder with pain. I find my voice in the darkness and I stop being strong and I stop accepting the pain as my part of the bargain and a little love seeps in through her arms, her kisses. My dark and silent prison unlocks a little. A little light reaches me, and I don’t feel so alone or so afraid anymore.

Happy New Year 2016!

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This is my celebratory lunch, watermelon & cherries. I am having a wonderful day, singing around the house doing housework and feeling fantastic. I’m finally starting to get some hours or days where I’m not completely demolished by exhaustion and nausea! It’s been going on long enough that I find I have to keep reminding myself that I haven’t had a major health relapse, I’m just pregnant and that’s a good thing and I’ll feel better soon. The most wonderful thing about feeling better is enjoying life, even the drudgery, and suddenly recalling forcefully that other people haven’t been far more productive than me because they have greater willpower, but because they don’t feel so horrible!  I find that depressingly easy to forget after a few weeks home sick. I am so ready for the second trimester and hopefully a lot more days like this.

Last night I had a meltdown about my work/career/money plans again, which is currently my blackest pit of misery and not hard to tip me into. People were kind and although no one had any easy answers for me I was reminded that I have not failed at everything I’ve set out to do. I’ve taken many risks and worked hard to rebuild my life over the past 5 years and a lot has worked out brilliantly for me – I have an amazing life partner I adore, a lovely home, animals and a garden, a whole tribe of friends and family whom I love and who love me. I’ve helped people and made art and learned things and now I’m pregnant with a healthy little 9 week old froggie. My world is full of valuable but unpaid opportunities and people doing good work in fields I’m passionate about. I’ve found my passions and developed many skills and helped many people. Paid work has just proved a much tougher nut for me to crack, and that’s not for foolish decisions or lack of effort.

So, I’m drawing a line in the sand. Last year was a roller coaster with some very, very dark times for me that I’m not entirely through. I’m still nursing my very wounded soul. I want to find new stories about my work situation to counter my brutal sense of failure, exploitation, gullibility, and uselessness. I want to coax my sense of humour back to being a regular part of my life. I want to spoil my lover and enjoy my tribe.

For now, I’m going to rearrange my house, go camping with my love, and wring the most I can out of every moment I feel good. Happy new year!

There’s a first time for everything

We had a good scan!!

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One, perfect little baby, wriggling and alive. Exactly the right size, and a strong heartbeat of 173 bpm. Due in early August. This is what we think we’re seeing in our picture:

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Everything is fine. Placenta is anterior, kidneys, ovaries, and cervix all look good.

After an interminable wait in a room full of pregnant couples, we were in and out of this appointment so fast we hardly had time to register that everything was actually okay. We’ve been stumbling around in a state of teary happy shock ever since. Our first prenatal appointment is in two weeks and this time we’re actually going to make it and get our orange book. No showbag has ever been as coveted.

Today there are happy tears and chocolate and the joy and relief of our friends. Today is a good day.

9 Weeks Pregnant

Well, we’ve made it this far. Tomorrow morning is our first, all important scan. If all is well, our little frog is about the size of a large raspberry, or for the geeks, the One ring. I’ve been pretty constantly sick this pregnancy and have lost quite a bit of weight due to the nausea. Combined with the heat I’ve been pretty useless, although I am still surfacing bit by bit from the pit I’ve been in, getting flashes of insight that my sense of being lost, loathed, and exposed to ridicule are products of my own mind rather than the reality of my life and work. Bitterness gradually eases into grief and self care.

Rose and I spent this morning weeping in each others arms, planning for possible loss. What we’ll name them, what our fears are, who we might ask for help. Then we had a quiet day doing whatever we needed to to stop clawing the world apart. I read on my lovely new kobo ereader, napped, had a bath, and we played a board game with a friend in the evening.

The world is suspended. Rose and I have never had a first scan with good news. Tomorrow morning feels like going to the biggest lottery in the world – a huge dream come true or a whole world dashed. The stakes feel unbearably high. We laugh, do things together, cry, feel numb, retreat into silence, reach out, over and over again. All possible worlds lie before us. And our minds try to break down the odds, understand the future we need to prepare for. They whisper that all is well, they whisper that a good scan tomorrow is still no guarantee, that 8 month pregnancies can still end in loss, that 3 year olds drown, that Mums die in car accidents. That tragedy is always part of life. One way or another our hearts will be broken. We try to face mortality and bear the unbearable.

Our hearts are not up to the task. If our hopes burn, we’ll burn with them, and what walks from the ashes will be different to who we were before. I can’t predict anything with any certainty but that; every step on this road changes us both. So we try to be kind. This is what it is to be alive, humour, love, terror. The lights that guide us and the darkness that parts us. Hands reaching across the dark.