Looking forward

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I’ve started a new oil painting, about walking in the local park at night, as I loved to do with Zoe before I was pregnant. There’s been a lot of art this past week. ūüôā

Tomorrow is our baby shower/blessing way. I’m excited. It’s been a sad week too – both Rose and I are waiting on news as each of us has a grandma in end of life care. In both cases they live much too far away for us to visit, which is hard. It’s strange being happy about the baby shower and sad about death and loss at the same time. Rose and I find ourselves feeling vulnerable and anxious, wanting our people around us tomorrow, a sense of connection to our tribe.

We move between grief and joy, the way I move between pain and pleasure in this pregnancy. One hour we curl up in bed and cry and talk about all the sense of unfinished business. The next we pack baby clothes and games and food for tomorrow, ticking off check-lists and making plans.

I’m soaking up every hour I get where I’m not overwhelmed by pain but can find the tremendous hope and joy in carrying our baby; counting the stretch marks like tide lines on my skin, Rose and I holding my generous bump to feel the baby dancing under my skin. Watching for those moments even if they are brief, knowing they will be gone so very soon and I’ll look back on them for the rest of my life, maybe even miss them at times. It’s been a very hard pregnancy, but not every minute is miserable. There’s beauty here too; hope, longing, and love. Looking forward to celebrating that tomorrow.

IDAHOT Picnic & 28 weeks pregnant

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I volunteered to cut the rainbow cake. I usually do this at family events – I took over from my grandpa when I was a young teen, because he used to do that cut a random size slice and then another random size slice thing, and we’d all pass the slices around the table as he went… thin slices got passed on quickly, thick slices were lingered over like a game of musical chairs but with cake. Inevitably some were deeply disappointed with the slice that settled on them. A quick head count and a little math solves that issue!

IDAHOT is the international day against homophobia,¬†biphobia and¬†transphobia. I waddled up following a morning at the printer and framer putting in the final orders for my exhibition, which comes down this Friday! It was a good, fun event and nice to see friends there I haven’t caught up with for awhile. Rose stayed home and used the time to get lots of homework done on my computer. I stayed out and pretended I’m not possessive and territorial about my computer. I’ve coped pretty well with sharing the rest of my home with everyone else, but my computer and studio (ie table) do bring a slightly crazed one-eyed barky critter out in me.

There was a cool badge maker there so I made this for Rose:
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Pain levels are still very high, I’ve been re-reading¬†Explaining Pain¬†which was a good refresher, but woke at 3am to cry about how hard this is, and sad, and all the wasted years being sick and swamped by pain. Sometimes even the encouraging and helpful triggers such grief and regret. Bubs is head down most of the time, which is causing bad sciatica, hip pain is bad, and heartburn is bad. I have finally put a bit of weight on this pregnancy though, which is great news. Fibro is a bitch, I’m getting bad facial pain, a twitchy bladder (not the same as pregnancy needing to pee every few minutes), muscle cramps in my calves, chronically irritated skin, and fun new sensitivities. I’ve asked for a referral to the psych team at the hospital as I’m getting nervous about how well I’ll recover from birth and worried about being stuck in hospital needing support. The psych team are the only ones who can override the usual rules about partners being kicked out overnight. The prospect of being forced to be left alone overnight in severe pain with our little baby to care for as well as me is a bit harrowing. If anything has gone wrong and I’m feeling emotionally fragile too, hospital is a horrible environment for me. I recall once waking to find night nurse trying to do obs in the small hours of the morning following my appendix being removed. She touched me while I was sleeping and I woke the whole ward with a blood curdling scream and had clawed my way to the far side of the bed before I’d even opened my eyes. When I did I found I was perched on the edge of the bed about to fall/leap out, and the poor nurse was flattened against the far wall. Following that was the slow wail of all the infants in the ward protesting. I don’t know what adding a small baby I feel intensely protective about might do to that reaction but I suspect ‘downgrade it’ isn’t the usual answer.

Baby is growing well, I’ve been doing finger-prick tests and my results are all great re gestational diabetes, and there’s loads of movement and kicks. We’re into the countdown now and I’m looking forward to having more of the house and sheds sorted ready for arrival. In other news, having made us wait an extra 6 or so weeks for our assigned midwife to come back to work, it turns out she’ll be on maternity leave when our baby is due, so we’re being reassigned anyway. There’s a strange sense of hype and disappointment about the whole process with our hospital. We’ve only had two appointments with our midwife so far, the first we spent talking about delivery options and preferences and worries, the second we discovered she’s not going to be here anyway. It’s odd, because I know that we’re very, very lucky to have access to the healthcare we do here in Australia, but there’s this sense of indifference that’s unpleasant, being very small parts of a much larger machine and having very few choices and little power to influence anything. It makes me want to run away and give birth in the bush.

On the plus side though, my appt with the hospital anaesthologist was surprisingly excellent. I’ve never had a good appt with an anaesthetic doctor before, usually they don’t beleive me about my allergies, or they freak out and make me undergo procedures like endoscopies without any. This guy was excellent, he listened, asked intelligent questions, gave me good information about options and how to get the most out of them (did you know gas and air works best if you start it at the beginning of a contraction, count through them, and stop it about 2 breaths before the peak? This allows it time to be effective but lets you ride the last of it without having much in your system for the rest periods, which reduces the chance of side effects). We wound up talking about self hypnosis and he walked me through a short technique for self hypnosis which I took to. It was a good appointment to follow the others with, I felt like there was actually a point to turning up and that in among the grinding machinery of a big public hospital, the endless waiting and being shunted from service to service, there were little treasures of useful information and ideas. Hooray for those.

23 weeks pregnant and sick as a dog

Rose is sick, I am sick, bubs is doing great. We’re both on antibiotics for bacterial infections (tonsillitis for her, sinusitis for me) and I have been so sick and sleep deprived this week I’m desperately looking forward to feeling better. With my drug allergies plus being pregnant there’s almost nothing I can take to help reduce the pain or get me to sleep and I’m now very worn out. Food aversions are even more severe than usual and I’m struggling to eat and keep down fluids, which is scary and stressful and makes me feel like I have an eating disorder and worry about developing gestational diabetes. Every time I read about the importance of a balanced, pregnancy safe diet and regular exercise I kind of want to scream because at the moment I can hardly walk 50 yards. The sheer misery of chronic pain is hard to overestimate, I cry a lot, I’m very irritable, and I feel completely exhausted. I’ve also stopped sleeping, which may be sickness or may be pregnancy insomnia…

Just when I think I’ve learned all the horrible things pregnancy can bring with it, I stumble across something else. Frankly right now I’m wildly over all of this and feel like I’ve been sold a load of rubbish about what pregnancy would be like. I kind of can’t beleive I actually wanted to experience this, was really excited about it and chose to do it. The lovely moments of joy at feeling baby move simply don’t stack up alongside months and months of being madly unwell. I’m perfectly capable of being really excited about feeling my baby move in Rose’s tummy, thankyou very much. I hate complaining because she’d love to carry, and because people sometimes think that means I don’t want to be having a baby or that I’m not grateful we are expecting. But hell this has not been fun!! Fibro and pregnancy and sinusitis especially are kicking my ass and it’s not fun or exciting or joyful or glowy, it’s just stressful and exhausting and bloody miserable and yes I chose this. Argh!

Fortunately froggie is pretty unaware, kicking away every day, especially in response to Rose singing to them. Thankfully! Our GP got out the doppler today and that wonderful heartbeat, so strong and rhythmic, it’s such a relief to hear. I finally have an appointment to meet my midwife for the first time next week, which is a big relief because the bloody hospital has been confusing us no end with all manner of contradictory information.

I am, as you can hear, pretty overwhelmed. Rose has been superb. Pain overwhelmed me last night and she rubbed my back and talked me through a visualisation where I hadn’t spent the day crying on the lounge, sleepless and exhausted, but instead we went out together on a picnic through the beautiful autumn trees. And the pain stayed there in my body and face but for a little while I went somewhere else, with Rose, somewhere peaceful and beautiful where everything was okay. And I saw the wall I have to jump over to reach that place – grief and hurt for every night I’ve ever spent alone with such pain. But last night she took my hand and I lept the wall and away we ran; into the red and golden leaves, into a place of quiet and promise. Into a world where my body is whole, and we sit beneath the trees by the water together, red velvet against grey stone. Her hand in mine, her beautiful hair snagged with a tiara of leaves. She is my home. She is my peace.

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. ūüôā

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. ‚̧

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.

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. ūüôā

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. ūüôā

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. ‚̧

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.

Facial Blindness

Siiiigh, so a great person introduced themselves to me the morning of the recent conference, tells me they know my partner, and really does it with such aplomb, I’m impressed. We have a brief chat about her work, my blog and so on. I’m looking forward to talking to her more.

That evening a great person sits down next to me, we start talking, I ask about her job, tell her about my partner, and so on. It’s not until she gives me an odd look and says yeah, your partner is great!… that I realise it’s the same person and I’ve just put them through the identical conversation.

Goddamn I hate doing that! Grr dissociation can be a pain!

It was many years before I came across the term facial blindness. I really notice it at conferences! If I want to thank or speak with a keynote speaker, I must be quick enough to get up the front and identity then from close up before they are enfolded by the crowd. This is because I cannot actually identify them by face. I live in fear of shaking the wrong hand and thanking a random audience member for their great presentation…

I have no idea who most of these people are and can’t identify them by sight unless several system members have spent time with them.

How can I be at a mental health conference and experiencing dissociation and still feel like no one would have a clue what that is or be comfortable with me talking about it?

Sigh.

Tony Hill, one of my favourite fictional characters, describes himself as ‘passing for human’. That exactly how my invisible disabilities and diversity makes me feel, like I’m pretending to be normal and getting caught out.

In this case, on my third interaction with the lovely person, I grasped the nettle and mentioned I had facial blindness and that I needed them to cue me about their identify for the first 10 or so times we meet. They took it really well and I felt less the freak. Sometimes we have to be brave to make the invisible, visible, and to speak the taboo.

Poem – The Dog in the Night

On the last hour
Of the last day
Of the conference
I find a way to hear and to speak
Trembling and ticcing, blurting and startling,
We have our first exchange.

She looks at me shrewdly – “It was hard for you to be here?”
“Yes.” I say with feeling
And suddenly they don’t listen because I’m armoured and brilliant
But because I’m naked and passionate.
Showing up was so hard.

Here, on the bay, afterwards,
I wake from a nap
To find the light fading
And the water calls to me, needs me to be
Out by it, watching the light fade from the sky
So I slip my velvet dress on and my woollen warm things
And go stand in it, in my little shoes,
The ones I wear because it is so very easy to slip them off
And go running over the lawn, like a child
Some things are easier to hear in clothes like this, easier to be present for with
Bare feet on grass.

The sky is a windswept fire
The ocean murmers a gentle heart beat
Grass sharp with cold dew
The stars, coming out, faintly, one by one
And I can’t help but wonder
If it is also hard
For my world to show up
Day after day, to a people too busy,
Too sick, too broken hearted to see or hear its language
If there’s some vast, subtle grief beneath the splendour
If the daisies, opening their faces to the sun and going to sleep again with the night
Close their petals with sorrow
If the crickets singing chose that deliberately wistful tune
Or the anxious dog out there in the dark, barking his incoherent warning into the shadows whenever I move
If he isn’t also crying out in a language I can barely understand,
Telling me the hour is late –
The night is vast.

The dolphins in the bay sing of love
But the dog in the night warns of loss
We have so little time left
To learn how to live.

In front of all this splendour
My hands feel so empty
I want to give something
Make something, touch something
Find some token of love and affection
To return to the world
And yet
When I open them,
The moonlight fills them
When I touch them to my face
They smell of the sea.
It is the question, and the answer both.

Poem – Understanding the power of professional detachment

In Day One of the Hearing Distressing Voices Workshop training, I had the awful but insightful experience of roll playing a professional mental health worker. It disturbed me deeply but also fascinated me, and I wrote this poem in my lunch break to try and capture as much as the experience as I could, so that I could reflect on it later.

The context of that role play is that the other workshop participants, those service providers and mental health staff who don’t have a personal experience of voice hearing, are trying to do tasks and engage with these pretend services, while wearing ear buds that are pouring ‘voices’ into their ears from an Mp3 player.

Myself and the voice hearers have been asked to pretend to be doctors and treat them as mentally ill patients – to be polite and respectful but filter everything they did through that framework and to maintain professional detachment in our manner. In some tasks we were actually delivering real psychological assessments (to determine their capacity and state of mind) that are used in residential and inpatient services today.

Role playing the doctor
I was nice
I made eye contact, smiled, shook their hand
Used their first name, didn’t touch without permission, didn’t sit behind a desk, didn’t ask questions about sex or trauma

But I also pushed then through,
Subtly dehumanised them
Didn’t give normal feedback signals
Respond to things they said
Treat them as intelligent adults.

And at the end I wanted to cry
I wanted to throw up
I wanted to run around the room and beg everyone for forgiveness and to know that wasn’t me
I wanted to be touched, to be hugged, to hear the voice of my loved ones
I wanted to be made human again.

My voice was screaming “I hate myself”
My hand was ticking violently in front of everyone
I was rocking
Swaying with nausea and exhaustion and intensity

The most terrifying aspect of it
The darkest part
The most triggering thing
Is that it was…

Easy.

So fucking easy to do.
I had a quota to get through
I had to reduce wait times
I had to get people through assessments as quickly as possible
I was totally secure in my knowledge that I was one of the good practitioners
I was one of the nice ones, I smiled and was polite and respectful
I was exasperated by how many of them there were
How unwilling they were to cooperate
How unwell they were
How slow at tasks
Easily confused
Constantly needing me to slow down, repeat myself
Everyone was filtered through a single paradigm –
Did they make my job easier or harder?

They disobeyed even simple instructions
They treated me as the enemy and the bad guy
They allied against me
They were unhelpful in directing their own recovery
Lacking insight
Bewildered
In need of guidance
Nothing like me or the other doctors.

They tested extremely poorly
The ones who tested better were often more aggressive and hostile
Clearly less unwell
Probably too high functioning for the program.

And I was totally outside of the drama
Above it
Detached
They got angry, frustrated, hurt, petty
But I was completely secure
Armoured in professionalism
Nothing they did could actually hurt me
They simply didn’t have that power
They could irritate me or trigger a little warmth
Share a moment of connection if they talked to me with the right mix of respectful gratitude and equality
But they were like children
I saw the whole picture and they knew nothing
Nothing about the service, nothing about themselves, nothing about mental health or treatment
I was the expert and I was here to try to make them do the things I knew would help them get better
They were mostly an impediment to this process
And they couldn’t make me feel anything, anymore than a 3 year old screaming “mummy I hate you!” had the power to devastate
They just couldn’t.

So they were in the muck
In crisis
Hopeless at caring for themselves
Full of needlessly intense feelings
No capacity to see the whole picture
To appreciate my role or how hard I work for them
It was a thankless job
And they were often degrading to me
But fortunately I’m very secure in the knowledge that I’m doing a good thing in the world
I don’t really need their validation
It’s gratifying when it happens but it’s not necessary
And I’m so glad I’m not like them
So glad I can look after myself, shower, dress well, cook, clean, hold down my job, my relationships
I’m very blessed and I know it
There but for the grace of god…
I’m glad that I make a difference in their lives
It’s good to be able to give back to those less fortunate.

*More discussion in the comments

Moving between worlds

image

The days start pretty well, working from home.

I’m somewhere between hitting my stride, mad obsession, and betting kicked in the head by another sinus infection. Last week I worked all day every day on business and networks – which are growing at a phenomenal rate as all kinds of things are clicking into place about marketing, communication, and finding a language for what it is I do. Changing gears or taking time off is somewhere between very difficult and completely impossible. I had my first migraine in years the other day and had to stop everything and go lie down in a dark room. For me these have only ever been drug allergies… was it a food allergy? Driving home through incredibly bright afternoon light in the hills (if you haven’t experienced Australian evening light when the sky is clear, try driving with a industrial spotlight in your face)… or trying to stop the cascade of information in my head? I don’t know. If it happens again I’ll know more, but one incident is not a pattern.

I am drafting policy documents for the networks and not for profit. I don’t mean to be, but I can’t stop it. Things that never made sense to me are making sense, and in this clarity everything I’ve ever thought, read, or experienced, comes rushing into view… a new perspective. I’m finally learning a new language and everything is translating itself into and out of it. Art and mental health are sparking each other in a continuous loop in my mind. The tip of my index finger has now become permanently numb from writing.

I need to get college homework done. I have 3 artworks and 2 essays due soon, and work do do on 3 journals. It’s almost impossible to make time for it. But I will. Last night I set myself the task – no business or networking work at all until after 5pm today. At all. Even returning a phone call or an email. I don’t have the control to just do one thing, so it needs to be a closed door. Panic and frustration screamed inside me. So then I did whatever I had to until the screaming quieted. I set up my work table. I cleared away all network and business paraphinalia. I checked my do list and updated my post it notes so I wouldn’t forget anything important – and didn’t have to waste mental energy remembering it. I got out my papers and sewing machine and library books and notes and journal and all the inspiration and trappings of one of the art projects I need to work on. I could feel the screaming settle inside and my mind change focus, start to pick up the threads of this project with keenness and interest, start to knaw at the problems and muse about the possibilities. I went to bed with the art project brewing and my mind mollified, like taking a toy that needs washing off a child and giving them a different, but still interesting toy to investigate instead.

Today I’m up. I’ve slept, I’m rested. My sinuses are horrible but I still have half a box of tissues so I don’t need to go anywhere. The lounge is set for art. I’ve filled two buckets with weeds and rose trimmings from the garden – starting by getting my hands in soil. I have water to drink and Radiohead playing.¬†This is how I cross the threshold and shift my focus – I change the environment. I’ve always known this but not known what I was doing. The artists in my system have turned up, like wolves sniffing the air. Something for them. The papers and inks call to my hands. A language of their own.

Out in the yard, I’ve set the sprinklers as the garden was dry. It’s easy to miss that during the cold months, but here in South Australia just because it’s cold doesn’t mean rain has fallen. You need to walk in the garden to notice all the little signs of stress in the plants that ask for water. And I think to myself – that’s another language, of a kind. All these different languages the world speaks. All these different worlds, nested alongside each other. And here’s me, changing shape, colour, name, and mother tongue. Figuring out how to open the doors and cross the thresholds and move between the worlds.

In the grey light, the water drops hang silver on the plants. The garden is strewn with pearls.

Pain and art

Excerpt from my Photography Journal for College, 2014. Topic set for the class “Self Portrait – Reflections – Identity

It’s not about ‘managing’ pain. How do you eat pain? Do you drink it? Or breathe it? Does it stay locked in your body, in muscles like rocks that strain to armour you against the world? In a stomach of snakes writhing, in eyes that are dry and blink too much? Do you find some way to digest it? Grind it down into small pieces with poetry, wash it out with tears? Do you hold onto it, storing each memory, like wine, ink on skin with tattoos? If you are suffering unbearably you had better find a way. All of us will one day need a way to bear unbearable pain. All of us will need ways to grieve, to be emptied, to be changed, to be burned to ashes, and to live.

***

I use the metaphor of fire for pain, a lot. I wonder if I can reflect flame onto my skin? Or into water? The dead leaves in the pool work well as a metaphor. Loss, autumn, winter, death. Rotting down.

There is an ocean of pain in me
Some days the tides
Are high and I drown –
But I do not drown. 

***

When I’m sick my world becomes:

  • Bed
  • Bath
  • Armchair
  • Computer
  • Toilet
  • Fridge

What’s the point?
What am I saying?
What questions am I asking?
What am I showing that hasn’t been seen before?
What am I exploring that I’ve never shown?

I talk about pain and shame but I don’t show photos of my sink full of dishes.
It doesn’t seem like enough to just show the illness. Why? Why do that? It will make people uncomfortable. Feels like self pity. I want to – show something people don’t usually get to see. Tell a side of the story that is about more than loss. What don’t we tell about?

  • Transcendence
  • Spirituality
  • Rage
  • Hope

No one sees me paint in the bath when my pain is bad but I’m desperate to create. There’s something there – raw – an energy – will to overcome.

People think sick people’s lives are boring and worthless. We are useless, lazy or¬†objects of pity. We are defined by our conditions. We are forced to be naked in public – wearing our private personas in the public arena without the protection of a job to use when answering the question “So, what do you do?”. Can I answer that question in a zine in honest, unexpected ways?

So, what am I making for this zine? I want to photograph my soul. I’m crazy.

Identity and art

Excerpt from my Photography Journal for College, 2014. Topic set for the class “Self Portrait – Reflections – Identity

Tutor G in first class – asking us who we are and what represents us. Asks me if I am my dreads. I’m startled by the idea. It seems frighteningly reductionistic. Like seeing me as my gender/skin colour/height/taste in coffee.

I am not these things. Maybe self identity is as much about being able to be seen as something more than a collection of stereotypes and assumptions – the ‘headline grab’ of a person’s life:

“Nothern Suburbs Woman”
“Prostitute”
“Avid Gardener”
“Psychiatrist”
“Father of Three”

Are we not more than these things? More than our job, our body, our family, our disabilities, our losses, our skills, our loves? Is there not something beneath and beyond things? Some capacity for growth and change, some sense of self that can be authentically expressed or violated?

Who would you be
If I took from you

Blue sky
Unscarred skin
the hope of food
What would look back at me
From your cage?

How do you calculate self?
I am not a list of my skills and tastes and interests and fears and qualities and attributes. Do not my masks tell you ask much about me as my face? Do my lies not reveal as much as my truths? Do my fears not tell you as much as my loves? Am I not as defined by what I am not as what I am?

Tutor S says we are a synthesis of these things, that in the glue that binds them we find self.

I think we are more than the sum of our parts, and every time we forget this or fail to see it in others we do a violence.

Reductionism.
Loss. To be consumed Рby fear, pain, sickness, grief. To be forged. To not rise above, or avoid, but pass through. Into the shadow. Into terror and anguish.

“I think” she says, “In one way or another, the topic of identity will be your life’s work.”

“I know,” I sigh, “All my works are self portraits, no matter what they look like. I’ve done my best to come to terms with that, it’s that or stop creating.”

“Me too,” she says.

Life and art

Excerpt from my Photography Journal for College, 2014. Topic set for the class “Self Portrait – Reflections – Identity

Is it that I show you the world, or is it that I show you my world?

I think of my wrist poem series. Something I’m ashamed of because it so publicly displays my brokenness. And yet something I wear publicly because I need to display it.

My blog, which is so often about tearing down the image that is being formed of me. Tearing away another layer. Being more vulnerable.¬†I can’t bear to be suffocated by my own ‘public image’.

Walking away from class, having talked about the DID, feeling myself sullen and afraid and angry. The shying away from (their) curiosity. Don’t see me as my ‘identity disorder’. Don’t see me as my pain. Don’t see me as my successes. You don’t see me. (And I don’t see you) Walking in the twilight and a girl smiles at me as we pass each other crossing the road. And suddenly I’m happy again, the spell is broken, I’ve come up out of the dungeon into the autumn air and the world is beautiful and velvet with buses and my mind is full of thoughts and I think of the aspect of my queer identity and how I’ve not even touched on that yet, yet this beautiful girl with dark hair and the lovely generous smile has woken my heart and reminded me of joy. Who am I? I am a student, sitting on the red steps of the Tafe, watching a woman lift a stone from her shoe as night falls and the buses go home, because I have to write these thoughts, because I feel alive again, because she gave me a smile and made my heart glad, because I talked about soul with my tutor and she gave me back my identity as an artist.

Life doesn’t get in the way of making art,
Life is the subject of art.
If pain stops me from painting, then write about pain.
If sickness stops me from sculpting, then document it with photographs.

Go into the places of fear and vulnerability. The things I’m reluctant to explore or display. They’re not distractions, they’re the subject.

The art that I make because I must, to keep myself alive is ‘real art’. The photos I take to document the hard times, the ink on my wrist that stops me from slashing it, the poems in my journals. Even when no one else sees them. They are art. They are not a distraction from the ‘real’ art.

This is art too, this place of rawness, intensity, need. The place I’ve learned to shield and conceal.¬†Does anyone write what they really think in these journals?
What an idea.

It starts with this: put your desk in the corner, and every time you sit down there to write, remind yourself why it isn‚Äôt in the middle of the room. Life isn‚Äôt a support system for art. It‚Äôs the other way around.‚ÄĚ ~ Stephen King, On Writing.

Photomontages – illness & identity

Last year I did a class of Photography where we learned the basics of a darkroom, and made photograms, photomontages, acetate negatives, handmade negatives, and zines. The topic chosen for us to explore in the art was ‘identity’ which I wrestled with a lot at the time and found that I slowed down on writing this blog while I was feeling so exposed. I shared that struggle in Choices¬†and Soul. I’ve dug the journal out this week and thought I’d share my work. Here are three photomontages I created about the intersection of disability/chronic illness and identity.

Sarah K Reece

Not Really One Thing or the Other

Sarah K Reece

Fire in My Flesh

Sarah K Reece

Dreaming of Spring

I don’t believe in mental illness (or, rewriting the DSM)

I don’t particularly believe in DID, schizophrenia,¬†borderline personality disorder, or post traumatic stress disorder. I don’t believe in mental illnesses as parallels of physical diseases – cholera is caused by a bacteria – schizophrenia is caused by faulty genes. I believe in people’s experiences. I believe that the pain, confusion, suffering, terror, and risks of what we have called mental illness are real. I believe that people experience multiplicity, mania, hallucinations, tics. But the way we understand them – as symptoms of illness, the process of diagnosis, categorisation, research, and treatment – I’m unimpressed.

I recently read a dark and brilliant review of the DSM by Sam Kriss – written as if the manual was in fact a dystopian novel. It is brilliant, sad, and moving.

The DSM is the ‘psychiatrists Bible’, a massive reference of all the diagnoses we hear about; depression, bipolar, schizophrenia. In my opinion it is a massive project started for very legitimate reasons that has become a horrifying millstone around the necks of many of us.

Every few years it is re-written, updated, with much argument. A diagnosis is removed, or several collapsed together. A dozen or a hundred are added. A few jump categories. A few thousand people are startled to wake up one morning and find their condition doesn’t exist any more. A considerable number of the conditions are very rarely diagnosed, particularly in poorer areas (at least locally) where Depression and Anxiety are the diagnoses favoured by doctors who are not even aware of most of the rest of the options.

The idea behind a manual isn’t a bad one, to my mind.¬†Language is important. Having words for experiences can be profound, the difference between mute suffering and solidarity and strength in the face of adversity. Our diagnostic manuals (the DSM and the ICD) were developed initially as a way of communicating between shrinks. A shorthand for what a patient was struggling with. It was important to define the terms because shrinks working independently, separated by continents,¬†were starting to use the same words to describe vastly different experiences. We were beginning to explore the idea of madness, to break it down and tease it apart and discover that it was not all the one thing but instead many different things. We built new words for these new ideas and then needed to secure their meanings so that the language was useful.

We modelled the language upon the medical language of disease, with the expectation that the same cause and effect approach would be helpful. This causes that. The reality of human psychology is at times, highly predictable. We share certain needs, certain fears are near-universal, certain responses instinctive to most of us. But we are also complex. We have drafted massive tomes about abnormal psychology and have little idea of what, if anything, is left to be understood about normal psychology. We are beginning to grasp the frustrating reality that more than one cause can have the same effect – people develop eating disorders through grief, dissociation, fixation on weight, and chronic digestive diseases. We are beginning to understand that one cause can have different effects – some people with dissociation struggle with eating disorder issues, others with chronic sensory losses, memory issues, or depression. As we attempt to capture these nuances, our manuals get thicker and thicker.

With thicker manuals comes a big issue – more and more human behaviour is gathered into this category of ‘abnormal’. Psychological illness, injury, and normal functioning become tangled. Defining abnormal becomes nearly impossible. For example; if more than 70% of people who suffer three major life stressors in a year will struggle with an episode of depression, is this a normal or abnormal process?

Furthermore, is it an illness? Physically sick people who are fighting infection experience depression during the illness because they should be resting to heal. Are we able anymore to delineate between depression as something that is harming us, sucking the life from us, killing our joy, and the lethargy and pain and inward gaze of grief?

Increasingly mental illness becomes fuzzy, difficult to define. Another marker of ‘abnormal’ has been ‘unusual’. This is why being gay was in the DSM. If more people are straight then gay, doesn’t that make gay abnormal? The dangers of defining human existence by the tastes and appetites of the majority are such that almost certainly all of us are in some way ‘abnormal’, and the cost of this, the rejection of so many people from this hallowed goal of normality, are massive.

Abnormal is often shorthand for extreme. Ah! they say, you simply fail to understand the spectrum! Yes we all experience a little of this and of that, but until you’ve seen mania full blown, an acute psychotic episode, someone so debilitated by anxiety they cannot leave their house, you simply can’t appreciate what real mental illness looks like. This definition seems to work until you look at other examples of ‘extreme behaviours’, at social activists who put their lives at risk for a cause they are passionate about, at kids moving across the country to have a chance to train in the artform they eat and breathe, all the hope and joy and optimism of a couple in love and about to get married. Extreme¬†can be dangerous, can be horrifying and destructive. But its also the place of hope for so many, their centre, their joy.

Abnormal can be shorthand for pain. When I write things like “I don’t believe in mental illnesses” that does NOT mean that I think people are making their experiences up, that they’re weak, lazy, vain, or self indulgent, or that there is not a real, overwhelming experience of profound fear and pain that can destroy people’s lives. The suffering is absolutely, definitely real. I have been there myself, I have been there as others have been broken or battered by it. I don’t actually believe we need a shorthand for pain. People use their own language to describe their experiences. They talk about being broken hearted, or empty, about feeling like their life is on fire, about the void that eats them alive at 3am when all the world is sleeping. A lot of the reason our manuals remain in such use is simply that we have organised our systems of care around this process of diagnosis. It’s a way of discerning those who need help. But I have a massive problem with the kind of help that starts by assuming there is something wrong with the person in pain. Sometimes whatever form the suffering takes does come out of the sky like lightning without warning and seemingly without sense. For others, suffering comes out of loss, trauma, loneliness – things that always cause people pain. There is nothing wrong with someone who hurts when they are harmed. It should be possible to grieve, to suffer, to need time off, to recover, without signing up to the idea that this is wrong and there is something wrong with you. As I’ve said before, if the process of mental health is about not hurting anymore, no matter what, then we’re trying to create psychopaths, not support humans.

‘Abnormal’ is often these days simply a way of referring to anyone who needs time off work or income support. Which again, is heartbreaking. It’s one of the reasons that deeply grieving people are now able to be diagnosed with depressive or adjustment disorders – because without this label of illness doctors are unable to compassionately exempt them from work or support them to access counselling or other treatments. Mental health as an idea starts to become twisted into something hyper-individualistic; someone who experiences none of the extremes of the human experience and never needs help from anyone to navigate life.

The DSM goes beyond a dictionary of terms because it links descriptions of single experiences together into syndromes, collections of symptoms that are given a diagnosis. These clusters shape diagnosis, treatment, and research. For some people, the cluster is a very good fit, describing all of their concerns and neither leaving something out nor adding something in. For many, they are not broad enough, so in order to capture all of the troubling experiences, they wind up with many diagnoses. Because of the medical model framework, this is seen by most as a sign that this person is sicker than someone with only one – or no diagnoses, when it doesn’t indicate anything than not fitting the common clusters! For some, the diagnoses are wildly inappropriate, as they have only one or two markers but wind up being diagnosed with the whole set in a dangerous prediction of their future experiences.

Some of the clusters are so poorly defined that the people group described by them vary so widely meaningful research is nearly impossible. For example, Borderline Personality Disorder requires 5 of 9 symptoms to be significantly present. Some people have all 9, some have one set of 5, others have the remaining four and a single overlapping symptom! To make diagnosis of BPD extra complex, many people who have experienced particularly childhood trauma will have some or all of these experiences for some years, and many people in current life crises will experience them also – yet this disorder describes an enduring pattern that plays out over many years. My experience has been that most young, distressed women in the mental health system will receive this diagnosis at some point. That is NOT to suggest that people don’t struggle with these issues long term, clearly many people do and some are my dear friends! But how the heck are we using one term for two people who potentially share a single experience in common?

Conversely, some diagnoses are defined so tightly that hardly anyone fits. Eating disorders can be like this, where a single symptom such as menstruation can see a woman bounce between one diagnosis and another and back again. In some categories the diagnoses are so narrowly constructed that most people who are struggling with a major issue in that area are given the catch all ‘not otherwise specified’ diagnosis. Which makes me wonder how well we are doing at the initial goal of creating a useful language for people.

The clusters exist for a reason – because they are commonly observed. But there’s two obvious dangers with grouping experiences like this. The first is that ‘commonly observed’ is going to not fit some people. Maybe even a¬†lot¬†of people. Which would be less of a big deal if we treated these syndromes like syndromes, but we don’t. We treat them as scientifically valid disease entities, which is a huge problem when someone doesn’t fit. Generally we start stacking them, which is similar to the effect on the stigma the person experiences. Two diagnoses is twice as bad as one when you have to prove you’re ‘well’ enough to work. Some people wind up with ten or more, each of which is confusing, depressing, and further alienating them from any sense that they might just be a ‘normal’ human having a tough time.

The second major risk with these clusters is the grouping of cause and effect, the mixing up of correlation and causation. For example, schizophrenia, which links experiences such as hallucinations to others such as dulled emotional expression or withdrawing from relationships. Each of these is seen to be part of this disease and yet one can cause the other, can have nothing to do with the other, or might not even be present for someone. Isolation due to bullying makes children more vulnerable to psychosis, for example, but in this case the trauma is a a key cause of the isolation, and both the trauma and the isolation are triggering the psychosis. People who experience hallucinations often find their close relationships become a mindfield of misunderstanding, miscommunication, and power battles about how to navigate the experience. Dulled emotional responsiveness is a common effect of feeling stuck in a double bind. Some voice hearers have no other symptoms of schizophrenia yet find themselves with that diagnosis for the simple reason that no other ‘hears voices but isn’t harmed or impaired’ category exists. Just because things may occur together does not make them all symptoms of a disease. Even more importantly – we cannot easily even perceive things that fall outside of our categories and language, which is why the idea of hearing voices meaning severe impairment has lingered on for so long – voice hearers who are not distressed or impaired don’t tend to volunteer to go round to their local shrink and talk about it!

I agree that we need a language, but I disagree that the DSM provides a good one. Utterly embedded in a language of deficits and loss, there’s little room for individual experience, for hope, for complexity or nuance. Abnormal becomes nebulous, and normal becomes a flatland of limited emotional range reserved for those to whom little has ever happened. Something terrifying happens when people are seen through this lens.

It doesn’t have to be this way. We can structure things differently. Ron Coleman wrote his own DSM Zero, a blank book for people to fill in themselves. Another shrink who’s name I can’t recall said in his mind, the entire DSM could be summed up to three states: “I feel bad, I feel crazy, or I make other people feel bad or crazy.” The rest was merely details. The underlying assumptions of the DSM about sanity and madness, about what is normal, what is human, and where the fault lies when people are suffering, are ones I find toxic. They dislocate people like me from my own self, from my own language and from my sense of being human and part of humanity. We can pull apart the edifice we have created and build something new, the way I have done for myself in understanding my experiences of multiplicity and psychosis. Personally my suggestion is to define terms but not cluster experiences, to make support possible without indicating whether ‘pathology’ is internal or external (ie whether the person is needing extra support because of things happening inside them or to them), and to be willing to use and respect the common terms people find helpful instead of forcing them to learn a new language of complex pseudo scientific terms. I think it’s okay to say broken hearted instead of depressed, or empty and chaotic¬†instead of borderline. I think research becomes more useful when it looks at experiences instead of diseases formed of clusters of experiences, and I think those of us who live outside the bounds of so-called ‘normal’ are more likely to find hope and joy when we aren’t sold a story about ourselves that’s saturated in ideas of mental deficiency and impairment.

Endo & adeno 2: a hidden cost

I’m not pregnant again. And I’m crook, endo and adeno are knocking me around. We’re still moving house, and Rose has hit major unexpected issues with her job, so we’ve spent the afternoon at Centrelink starting the process for unemployment support in case it doesn’t get sorted out. It’s been a really tough couple of days. If you don’t know what endo and adeno are, see Endometriosis & adenomyosis 1. Trying to get pregnant with these is rough, it’s an extra kick in the teeth each month on top of the sad news we’re not pregnant. Right now I’m pretty fed up.

My experience with these conditions has always been pretty horrific. My first period was at 13 and pretty normal. My second happened to fall in a week that I was away with my school for a major convention. I packed a collection of sanitary items and my two school uniforms, completely unprepared for the pain and haemorrhaging I was about to experience. All my pocket money was spent on buying extra pads from the toilet vending machine. I was drenching to capacity a super heavy size pad every hour. I have a vivid memory of sitting by my window on the fourth floor in the small hours of the night, sobbing, my mattress stacked against one wall to dry after I’d tried to sponge it clean, and the floor between the shower and my bedroom wiped down with wads of toilet paper. I felt in that moment that I was the loneliest person in the world.

My periods were always extremely heavy, particularly in the first few days. I struggled to cope. Embarrassing leaks, constantly going to the toilet, and stains on clothes, bedding, and mattresses were suddenly a constant part of my world. Teachers were often suspicious that I was merely trying to get out class and it wasn’t uncommon to have desperate requests to go to the toilet denied. I carried 15 or more pads with me at all times, just in case. Bullies thought it was amusing to steal these or scatter them around the classroom. In later years, homeless or living alone, they were needed in case I was too sick or broke to buy more in that first miserable week.

The pain was severe and nothing provided much relief. My journals from this time are full of distraught descriptions of feeling that my pelvic bones had been turned to hot lead that was burning in my flesh and running down into my thigh bones, that something was raking a sharp stick across the inside of my rib cage, of intense cramps and contractions that exhausted me. I would spend days huddled around hot water bottles, alone in bed, sobbing, or curled around my gut in the bath, or weeping in the toilets at school or work, learning to dissociate to carry on.

My periods also lasted for much longer than usual, around 14 days a month. Literally half my life was now spent bleeding. I experienced a level of body dysphoria usually described by trans teens enduring puberty as the gender they do not identify with. I felt deeply ashamed of my inability to handle menstruation, unable to connect with, care for, or enjoy my developing body.

The worst of all this was that it was happening in a context that normalised it all. I was seen as a bit of a drama queen. Doctors offered neither information nor sympathy. The chronic pain was made a joke of as a rite of passage I had to learn to cope with better. I was an embarrassment to others when I failed to manage discretely. A conservative school and home environment exposed me to constant shaming with inadequate provisions in the way of bins, extra sanitary supplies, or discrete options to clean accidents or hide stains. Menstruation was not to be mentioned as I had a younger brother who was being kept ‘innocent’. Basic supplies such as bins or pads were not kept in the toilet or bathroom at home, despite actually begging for them. As soon as I had a home of my own, I was proud to put both in the bathroom – a woman lives in this house and her needs are not something to be ashamed of!

Unlike other experiences of illness such as the flu, I was not offered much nursing care or emotional support when my pain was related to ‘private matters’. I have the distinct memory of weeping in the toilets at my part time job in child care at 17, dizzy, weak, and in awful pain, but gathering myself to limp back into work, bitterly confused that other girls didn’t seem to find this so hard. Constant invalidation and cultural embarrassment about gynaecological issues meant that endo and adeno isolated me. Deep loneliness, shame, and pain intertwined and each made the whole experience far worse, contributing to self hate, food & body issues, and chronic suicidal feelings.

Painful periods just don’t sound that bad, and that was a huge part of the problem. It wasn’t seen as serious, but this issue alone was enough to cause serious harm to me. At times when pain interrupted sleep and guilt and confusion about puberty and sexual development added to my distress, the beginnings of psychosis can be seen. Nightmares intruded into my blood drenched reality in profoundly disturbing ways. I dreamed of rape, miscarriage, and abortion, of having demons inside me, of clawing babies from my own womb. Waking soaked in blood and knotted with pain blurred nightmare and reality. My usual teariness began to deepen each month into suicidal blackness. I still struggle with profound lows which are partly hormonal and partly basically emotional flashbacks to these awful experiences. I began to believe awful reasons I was suffering, such as punishment for sins, my body hating me, me being evil. People around me treated me as if I was bipolar.

These are the kind of experiences that come to mind when people talk about how mental illnesses would be better treated of they were more visible.

Really?? Ever had facial scars and had to handle the stares before, or needed to use a wheelchair and watched people pull kids away from you as if you’re going to run them over, or, you know, discovered you have blood on the back of your pants and had to walk through the whole shopping centre to get back your your car? Oh, I see,¬†you mean visible, but in a nice, non threatening way that didn’t make people stare, laugh, or treat you weirdly. Good luck with that.

These are horrible, miserable conditions, for many people¬†they cost us deeply. We battle with chronic pain and anaemia, doctors who don’t get it, difficulty accessing treatments, troubles getting support from family and employers, difficulties with our sex life, and fertility challenges. It should be okay to talk about it, easier to get help, and less embarrassing to have to explain regular illness. I shouldn’t have to push back against everyone telling me I’m clearly doing too much when these things knock me out for a week – they’ve little to do with how hard I work or whether I’m taking good care of myself. They definitely shouldn’t be a secret shame that messes up our relationships, mental health, and our lives.

Tribe Night

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At least once a month Rose and I set aside some time to spend just the two of us. No friends or kids or work or stress, just us, celebrating us. Often we don’t call this a date night as not everyone in my system is ‘dating’ her, but instead she’s coined the rather lovely phrase Tribe Night. What we do depends on who feels like they need some time together, and how much money we have. As Rose is still waiting unpaid for her new job to start, tonight is a budget one. We’ve got movies from the local hire store, popcorn, and the half eaten gorgeous gingerbread house that was a Christmas gift from a generous, creative friend who cooked it in her tiny toaster oven in her apartment and probably lost a few more sanity points in the process.

Other favourite tribe night things to do are nights at the beach, hanging out in the trees at our local park, going to the movies, our favourite local Asian fusion restaurant, going out to fun art or cultural events, especially the free kind where dressing up can happen, hanging out in the nude with all the curtains drawn and good music, (some of us are lovers), camping nights away, and for the really introverted, reading together in bed.

Sometimes we have to work around health issues too, I read this gorgeous blog post the other day and thought it had great ideas for not-well hang out times: 10 Crip Date Ideas for the Disabled/Chronically Ill/Mad Person in Your Life

Have a good one folks. Don’t forget romance is not the sole domain of lovers.

One of the weird days

Yesterday was one of those blah days where nothing feels like a good fit. I tried lots of approaches, none of which helped, and shrugged, headed to bed and figured I’d feel differently after a sleep. Well, I was right. I had intense nightmares, of the kind where you wake up and feel so distressed you want to throw up. The content lingers like you’ve watched a vivid, personal horror movie that’s burned images into your mind. It’s been awhile since they were an issue! This morning was meltdown territory as a result, panic and intense dread. I took a bath, read some book, wrote in my journal, and scraped myself together enough for my appointments. Today was admin appointments, getting stranded with a vehicle that needed engine oil, and having a blood test – STILL no bad reactions, even on a horrible day like this one! Did, however, re count my days when I got home and discover I’d done this one a couple of days early by accident and will have to repeat it. Sigh.

I saw a disability employment person and cried about how stressed I feel about my business at the moment, wondering if I should be pursuing employment instead. She ‘reassured’ me that I wasn’t passing up some wonderful opportunity – most people like me with an episodic illness are unable to find good work. We get casual, short term, poorly paid work, issues with workplace bullying, and more often than not – contracted volunteering. So if I’m going to not get paid (or paid well enough to survive) and lose my job every time my health wipes me out for a month – I might as well be running my networks and continuing to build my business. Right? The anxiety levels have been tremendously high about it lately, I think trying to get pregnant is sending me into panic mode a bit. It a hard road to walk sometimes. And a brutal reality to face what my openness about multiplicity and psychosis are costing me – and what they cost millions of other people. I hate this.

On the plus side, I’m continuing to clean the house up (it got a bit swamped over Christmas, plus I need to make room for a guest and also Rose moving in soon), keep the garden alive through the heat, and sort out food and meals.

I feel way better than I did this morning, but still ‘off’. unsettled and not myself. Haven’t settled into the new year yet. I don’t have a sense of being on firm footing. I’m picking up on other people’s feelings, seeing the world through many different eyes (but not ours) – perspectives of friends, authors of books or articles I’ve read, proponents of particular ideologies. I move between them feeling the clashes and contradictions like burning places in my mind. Hot and sparky. Then I feel myself move back from all of them and suddenly nothing seems real. I find myself walking outside of my home and looking at a tree thinking – ah, there it is. Reality. The thing beneath all the theories. I feel slightly swamped and detached at the same time. And oddly lonely. Part of me is waiting to find out if I’m pregnant and it’s impossible to feel much about that so I’m not feeling anything. Not even numb, just like I’m holding my breath. I can’t breathe or feel again until the cycle ends. Last month I actually¬†felt¬†pregnant some of the time. This time I don’t at all. I don’t even feel like I’m completely here. Man, these reactions are unpredictable!

Ticking away in the back of my head, as always is the book. There’s always more reasons not to write it than there are to write it. I feel like I’m slogging through a thicket of brambles each and every time I just sit down at a keyboard or notepad and work on it for an hour. I don’t want to put myself out there as some kind of leader. I don’t want to present myself as an expert or have people follow my advice. I am aware – like most people who deeply investigate a topic – of the truly mammoth amount of material I haven’t yet read, ideas I haven’t digested, communities I can’t possibly represent. I hate it. I can’t do justice to the field. The only thing that keeps me going is reading what’s already out there and realising how huge the gaps are and that even my pitiful efforts are an improvement on some of the rank dogma that is messing with people’s lives. But hells, it’s hard to remember that.

So, here’s to the weird days. The not recovered, not perfect, not trying to lead anyone anywhere days where despite feeling like my brain is not entirely in this dimension I’m still a decent and useful human being. The biggest crisis today wasn’t even mine, I’m a support person in the backdrop of someone else’s rough time. (we have an extra house guest on our couch for a bit) I’m still needed and still loved and we all half limp half dance along together I guess. Missing my friend Leanne like hell. Signing off from the Colony. (she would get that, we used to write. My place was the Colony and her’s was the Outpost. All the shorthand and in jokes that die with a friendship.) Just breathing.

Systems & pathology, & mental health

I’m doing a lot of thinking about these things. Starting up a not for profit like the DI¬†throws you into this world of systems, policy, organisations. Small orgs like ours are often friendship based, very informal, sitting around dining tables. They happen in homes, spare rooms, basements, the local pub. They are relational. People come and go as relationships and life circumstances change. There’s a flexibility and vagueness of roles that is closer to our family structures. People do stuff, they harangue each other about the stuff they’re doing or not doing, they gravitate to roles they like and are most skilled at. Those with the least popularity or power do the jobs no one else likes. Success – and money – often transforms this process. What was a community or a loose organisation becomes a corporation. Every part of the process is systemised. Roles are defined and assigned by management. People rise through a hierarchy to better paid and more respected jobs until they reach the limit of their skills, or their position of incompetence. Relationships are controlled by the organisation and often arrange themselves in a class system where people are only permitted to befriend those in their own pay grade, rather than those above or below their position, and¬†often not the clients, at least within the ‘helping people’ professions.

There’s upsides to the corporate structure. Systems can be highly useful. Little beats the sheer efficiency of a good system. Sound emergency response systems save lives. The efficient distribution of aid in the wake of disasters are often a reflection upon the quality of the system in place to anticipate and manage such needs. Fairness is another benefit, where resources are allocated and people are supported according to need rather than who they know. A third benefit can be transparency – systems are¬†often far¬†easier to examine and assess¬†than are¬†loose collections of relationships in communities. When you’re asking a question about what works and why, or¬†if a group is efficient or fair, systems where everyone operates the same way are far easier to¬†explore.

Where we hit problems are when we implement the wrong systems for the situation, where a system based response is inappropriate and a poor fit to the situation, or when the systems have been constructed on the basis of values or assumptions that cause problems.

There’s a lot of talk in mental health about ‘the system’ and the flaws in it. Often such talk is rapidly derailed into suggestions about why it is so flawed, and who’s fault that is. Our entire psychological services, community sector, and to some extent, our non-clinical support services such as churches, support groups and so on, are all based around systems. The process is often¬†highly mechanistic in that¬†each member or¬†employee, functions as a cog in a machine. If the cog breaks or goes away, you replace it with another cog. Cogs are interchangeable. Cogs have limited control over their roles and tasks. They are moved around¬†and assigned projects by management, who are also cogs.¬†There are assumptions about power and safety that drive common practices such as professional distance. Relationships are either ignored or forced through team-building exercises. These kinds of systems tend to naturally degrade over time into highly complex bureaucratic processes. They consume a lot of resources to function. They often become inflexible and highly inefficient at taking up new technologies, approaches, or research. Communities that are successful at raising money and awareness tend to evolve into organisations, and organisations tend to evolve (I would argue degrade) into corporations with all the legal and social responsibilities and inherited ideas that come with that.

I find the corporate structure deeply unpalatable for many reasons. The astonishing inefficiency of resources is a big one. Where three people in a room will often constantly be seeking for cost effective methods to reach their goals, corporations routinely completely overlook new technologies or methods. They gear towards stability. Having figured out a way to operate, they stick with it. They keep paying massive phone bills despite advances in VOIP technology. They print masses of paperwork needlessly. They attach money to respect and create expensive norms, such as putting visiting guests up in hotels, where the small community would house them in spare bedrooms. They consume. Over time the organisational goals become less about their aims or mission statement, and more about self preservation.

Another problematic aspect of the corporate structure is that it is often very controlling and hierarchical. People at the top tell everyone else what their job is, the best way to do it, how they should dress, interact, and function. We tear down divisive and dehumanising class structures in other aspects of our societies, and rebuild them within corporations. When groups of people are clustered together like this, we often see a loss of diversity, and a loss of individuality. With those losses, other losses are predictable – such as innovation. We also see huge challenges in the area of ethics.

The Neuremberg defence, I was just following orders, nauseates us. We tend to expect and demand that all people are responsible for their individual actions, and answer to a moral as well as a legal code. This is a whole lot more problematic than it sounds at first. Corporations tend to subsume the identity of those involved with them, they set codes of dress and conduct. People are told not only what they are allowed to say, but instructed on what they must believe or value. Obedience is insufficient. An employee who obeys a rule Рsuch as confidentiality, or equal access for GLBTIQ people, or to deny assistance to a person in distress Рbut who clearly does not believe in this rule is unlikely to remain for long unless a shortage of other workers in that region keeps their position safe. No individual within a corporation is permitted independent moral action, but must instead come into line with the policies and procedures of the organisation or risk being fired. However, no member of the corporation is assigned responsibility for assessing the morality of the organisation as a whole. It is assumed that ethics, and the translation of values into policies (which is a hell of a lot trickier than it sounds) will be key parts of the processes of those few who have the responsibility for writing them.

So we have a diffusion of responsibility for ethics, between a small handful of people in managerial and board roles, enforced across an entire organisation. Many of those people arrive in their positions having first spent years working as regular members of an organisation where their opinions about ethics were specifically prohibited from their work life. Employees in the mental health sector, for instance, are routinely forced into the bystander role where they must watch harm being done, or help not being offered, to someone in need. Sometimes they are forced to be the person who does the harm or withholds the help in order to keep their jobs. Organisations who are fortunate to have highly ethical, insightful, reflective people with excellent management skills and a deep understanding of the complex relationship between values and policy in the management and board will tend towards better practices as a whole. Those who lack either the will or the capacity to create highly ethical practices will not. Groups have a natural tipping point at which the number of people who care Рor do not care Рabout something becomes the dominant organisational culture. Authority also dramatically influences our capacity to think or act otherwise, so the influence of the beliefs of those in such positions upon the workforce as a whole can be significant. The alternative is a fractured organisational culture where the management and workers operate semi independently of each other in a kind of chronic low grade class war.

This adds up to a training ground for management that starts by spending years employed not being allowed to consider ethics in their work life, and ends in positions of high responsibility, little or no attention to work relationships, and the requirement to ensure that every member of the organisation adheres to the policies and procedures to protect everyone from risks of litigation, bad press, and loss of funding. Corporations naturally decay into behaviour that in individuals we call psychopathic and narcissistic, unless a lot of effort goes into protecting them from that outcome. They often operate in dysfunctional ways. When a system subsumes individual identities behind roles, and replaces relationships with mechanical structures (cogs in a machine), they also tend to replace values with rules, and to confuse obedience to these rules as being the same thing as ethical behaviour and as loyalty to the system or organisation as a whole. The idea that one can be loyal and devoted to the organisational aims but have sidedness of opinion about the ethics of how those aims are meet is not one most corporate structures entertain.

This cog in a machine structure is extremely problematic in mental health because relationships are so key to support. It’s not enough to see a social worker every month, is far better if it’s the same social worker we’ve built trust with. Case notes do not replace a history and connection between two people. ‘Cogs’ are dehumanised by this model, and tend to be further alienated from the people they are supposed to be ‘fixing’ and moving on as quickly and cheaply as possible without making friends with them. Friendships are the primary model for support in our culture and yet are infrequent or expressly forbidden within corporate structure and mental health especially.

There’s tremendous tensions between the organisation and the individual. If we think of corporations as multiples, where the corporation is a person, and the people that make it up are parts, these parts often¬†lack voice, power, validation, and the right to be diverse. Dictated to by a dominant part or groups of parts, the rest are hostages who are managed or exploited. The corporation as a whole had a name and logo (face) presented to the world, and the parts must be brought into line with, present consistently the same, and hide diversity or division. I personally do not function at all well in corporate structures for precisely this reason: my system does not cope with a model of authority so completely at odds with our own, and we not accept the idea that ethical behaviour is the responsibility of someone else in the workplace.

If we think of a corporation as a tribe, being a member of that tribe carries a very high price in terms of individual identity and freedom. Perhaps this is simply more difficult to see in corporations because we are accustomed to them and accept them as normal, in the same way that we accept as normal that most people hate their job, find their boss very stressful, and hate their bodies. We in the west tend to be highly sensitive to incursions on the rights of individuals in other cultures, and yet oddly blind to the same dynamics in our own. One of the simplest and most obvious examples is that of our widespread exclusion of people with disabilities from the workforce for the simplest of reasons – lack of access, and our inability to work predictable hours when illness interferes. Tribal cultures are frequently organised on more flexible principles, where those who work do so, and those who are sick or injured contribute what they can, as they can. This simple conflict of structure in what we have created in our highly mechanical post-industrialist society, and the needs of those of us with sickness or disability underlies a massive problem of social justice, inclusion, welfare, discrimination, and invisibility. It is one more aspect of the loss of diversity.

So, what are our options? How do we navigate this? I would argue that systems have value. Patterns and routines can save us from being paralysed by the requirement to discuss and examine every action at length. They help us to function in groups, to take care of vulnerable people, to act quickly. Maybe a lot of our issues are not with having systems, but with having mechanical systems. I often draw inspiration from ecosystems when I’m trying to better support a family or group. The ideal is a balance of flow of energy, no one at the bottom, exhausted and neglected, no one at the top, consuming without giving back. Everyone connected but separate, giving and receiving. There’s many ‘natural systems’ I’ve no interest in replicating, such as the dynamics of a termite mound. But there are principles of connection and freedom that may help to inform systems that are a better fit for the people within them and the people they serve. Here’s a few thoughts about these kinds of systems via Communities as Living Systems (how nature can inspire fresh perspectives on complex problems) | joannahubbard.

  • Living systems experiment-they don‚Äôt seek a perfect solution, just a workable solution.
  • Within a living system something is always working.
  • Nature seeks diversity¬†– new connections open up new possibilities for the system‚Äôs survival.
  • A living system cannot be steered or controlled¬†– only teased, nudged and titillated.

We’ve done so much talking in mental health about how destructive the system can be, not only to clients/patients, but often to those compassionate people trying to work within them. We often treat relationships and systems as being at opposite ends of a spectrum, and yet our culture organises relationships into family structures and expects the protection of vulnerable members. On one level, families and friendship networks operate as a socialist sub-set within a capitalist culture. The wheels are oiled by a massive number of volunteers and unofficial support between people. This is still¬†a form of system, a pattern of organising a community. (It’s also one that doesn’t fit everyone, as minorities such as the GLBTIQ community¬†seek access to legal and social recognition for their relationships) We cannot build a perfect system or utopia, but we can build something more in line with the needs people are communicating and what we are learning helps people to recover from crises and distress, such as relationships.

Systems are not inherently destructive, nor are they inherently devoid of ‘natural’ relationships. They can be extraordinarily complex and difficult to set up, and often have unintended outcomes. They can fail in a myriad of ways, and funding success can destroy their capacity to function well just as spectacularly as financial ruin. Systems must operate according to (or at least, interact with, even if intending to disregard)¬†the legal requirements of the countries they are set up within. This can necessitate a high level of creativity, innovation, and courage, because the easiest path is simply to recreate the structures we are familiar with, however appalling. Great intentions are insufficient – the mental health system has undergone many reforms and each was driven by people with excellent intentions. The asylums from which we are rescuing people were built by those distraught by the fate of madmen who were starving in the streets. I don’t have an answer or a solution. What I do have is some experiences about what does and doesn’t work – in my own life, and in the groups I have created. I have some values about human rights and dignity. I have some hope that we can – all of us who are wrestling with this complex challenge – creativity engage and inspire each other to create organic, living systems that change and grow with us and with our cultures. I think some key aspects to this in mental health are:

  • Transparency
  • Freedom
  • Mutual Relationships

How these translates into systems and policies is something many people are exploring. Some groups are trying to set up suicide services that are ‘self check in’ to remove the¬†barrier of having to prove you need help before you can access it. Other countries are running mental health services on the principles of Open Dialogue where patients are part of every conversation and always have access to their own records. None of us are going to come up with a single, perfect answer. A big part of what we need to move forwards is safe, respectful¬†places to have conversations and share ideas, so that we can pool our experiences and wisdom and create something better.

Endometriosis & adenomyosis 1

“Extensive and severe” are not the words you want to hear when a doctor gives you a new diagnosis. Frankly, I personally feel that I have reached my quota for diagnoses, and that if anyone wants to give me a new one, they should have to trade in an existing one. Pick a card, any card… Sigh. So, I’ve been having as bunch of tests over the past few months to check up on my fertility. I’ve already been diagnosed with mild endometriosis, and donor assisted conception can be wearying for both families involved so we wanted to do all the checks we could and get any treatments needed before wasting a lot of time trying to conceive if there was a problem. So far a lot of the news has been good; I have healthy ovaries and lots of eggs. A few weeks ago Rose and I received the news that I have severe adenomyosis. It’s a bit hard to process, and I find it harder to share about physical illness and disability than I do about my mental health, so I’ve sat on it for awhile.

On the one hand, having a name for it makes no difference to what I’ve already been living with. On the other there’s a huge weight of sadness and fear. Perversely, there’s also a sense of vindication. I was frequently ignored and had my terrible symptoms downplayed by medical people and others, especially as a young woman. It was devastating and made me feel profoundly alone and overwhelmed.

A crash course in the conditions, not for the super squeamish. The womb has three layers, the outer one is muscle, then there’s a layer of tissue, and lastly the inner layer which is called the endometrium. This is the part that grows and swells up ready for a pregnancy, and then sheds and bleeds every month as a period. A healthy endometrium is essential for a fertilised egg to implant (that means link up to the womb via the umbilical cord) and be nourished and grow. In endometriosis, (endo) little patches of endometrium grow elsewhere in the body. Most commonly they are elsewhere in the pelvis, such as growing on the ovaries, intestines, and other organs. More rarely they are elsewhere in the body such as the lungs. It is very rare, but possible for men to have endo.

Nobody knows for sure how or why these patches occur. They’re like weeds, growing all over the place where they shouldn’t be. The big issue is that they try to function like the endometrium does, every month they swell up and then shed blood. This blood doesn’t drain away the way a period does, so there can be issues with pain and infection, and sometimes they can chew into places such as ligaments or patches of nerve cells. They can cause fibroids and adherence where tissues glue together, such as sticking the ovaries to the pelvic wall, which can cause worse pain. If the affected tissues are delicate areas such as the fallopian tubes, endo can compromise or destroy fertility. It’s also common for the extra blood loss to cause iron deficiencies. Endo is usually diagnosed through a laparoscopy, a surgery where the gut is checked out with cameras through small holes in the skin around the belly.

Treatments for endo are more usually about managing it rather than curing it. There’s a range of options from surgical removal, using hormones such as the Pill to prevent periods and therefore stifle the endo growth, dietary changes and so on. Some people find some approaches way more effective for them than others.

Adenomyosis is similar, in that again it’s the endometrium cells growing where they shouldn’t. With adeno, the endometrium invades the tissues of the womb itself. Pockets of endometrium cells swell and bleed into the tissue. In severe cases, all the womb is affected. It’s swollen and heavy with the pockets of extra cells, there are issues with pain, excessive bleeding, and cramping of the muscle layer. In some cases the adeno prevents the clamping down on blood vessels that supply the womb, causing chronic pain and bleeding problems. With severe blood loss, the body struggles to replenish the supply of red blood cells and severe anaemia can result. There’s only currently two ways to diagnose adeno: one is performing a hysterectomy, that is, taking out the womb, and then examining it. This is obviously not appropriate for young people or those hoping to have a child. The other is through an MRI scan, which is not quite as conclusive, but gives a lot more information than other scans such as ultrasound.

It’s only been fairly recently that adeno had started to be diagnosed, so not very much is known about it and sources of information are conflicting. It may increase failure rates of implanting embryos, miscarriage, preterm labour and other fertility challenges. Treatments are very limited, in some cases surgical removal, or hormone blocking to shrink the growth – sadly this only has a very temporary effect. Three months of hormone blocking will provide about three months of adeno-free cycles.

Both endo and adeno usually respond really well to pregnancy, and it used to be common for daft doctors to suggest pregnancy as a management tool. This is partly how the hormones help -they mimic pregnancy in the body and when taken continuously (without sugar pill breaks for ‘periods’) they suppress the growth of each. Both endo and adeno can be odd in that how severe they are and how bad the symptoms are don’t always line up. Some people with severe endo have few or no symptoms while others have mild endo but suffer terribly. The location of the endo may have something to do with this – for example endo that chews into areas with a lot of nerves may cause a lot more pain than endo in areas without many nerves. Some people have awful periods and problems with pain and no clear cause can be found, which can make figuring out a treatment incredibly difficult.

So, we have no way of knowing how the adeno may impact our baby plans. I’m having a lot of trouble with experiences of severe depression when we make even minor changes to my dose of hormone to manage these conditions, so at this stage we’re avoiding the hormone blocking treatment because I think my head might fall off or spontaneously combust. We’re tailoring my dose down carefully, hopefully in a couple of weeks I’ll be completely off the pill and ready for my first cycle! I’m taking iron supplements already as the severe bleeding leaves me badly anaemic, which is not good for me and particularly not good for a developing baby. We’ve also made the call that my efforts to be restored to a ‘natural’ cycle at some point are pointless – when I’m not trying to get pregnant I’ll be using hormones to keep these in check. The longer I’m off the pill the worse the symptoms get, so we’re hoping for a 6 month try at pregnancy then we’ll re-evaluate. We’ll be tracking iron levels pretty closely and if I’m lucky I’ll get pregnant quickly before the adeno makes it impossible to work. If I’m very lucky I’ll also have a good pregnancy! Lots of unknowns, but a little more information than we had before. And certainly all worth it for the chance at being a Mum.

Drawing class – maize

Rose and I are both sick with a tummy flu, and serious case of the doldrums. Siiiiiiiigh. I’m finding being sick so depressing it’s hard to breathe. I’ve had a bad headache for three days now. Or one month, it’s all blurring in together with sinus infections and surgery. I saw an ENT at the hospital the other day, he’s happy with the surgery and said everything is healing well. He also said I shouldn’t still be having facial pain and should see a neurologist. He was a bit of a dismissive ass, to tell the truth. Everytime I hear about how people with mental illnesses would be so much better off if they were treated the same as people with physical illnesses, I kind of want to laugh, in a hysterical, jaded, painful, coughing-up-a-little-blood kind of way…

I don’t really know what to do with that. I know I have issues with chronic tooth infections, and I’ve had basically two years of sinus infection near constantly. I also have issues with TMJD, pain caused by muscle tightness in the jaw. And I’m nearly four weeks out of surgery. At this point, I think it’s pretty reasonable that I’m still in some pain, and if the surgery healing isn’t causing it, likely one of the diagnoses I already have is. Despite a letter from the jaw specialist, and me reminding every single person I saw about this op, including the damn surgeon himself in the actual theatre, the request to scope my left check while I was under and check if there was infection or just scar tissue showing on my xrays was ignored. So I’m going to have to go all the way back to my dentist again and try to figure out if my root canal has gone bad and infection is eating my jaw, or if nothing is wrong and we leave it alone… Bastards.

In Drawing class, which I think I’m still just possibly attending often enough to maybe pass, we were instructed to make many multi media images of a single item. I chose a dried cob of maize.

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This last one is my favourite. I love inks. (They’re painted on white gesso)

Jumping at Shadows

I got really sick in 2001. It took another two years to get the first diagnosis that made any kind of sense – Chronic fatigue syndrome (CFS). Two years again to fill out more of the picture with diagnoses of Fibromyalgia and Endometriosis. It wasn’t until 2007 that severe Dissociation started to round out our understanding of my perplexing and severely disabling experiences. There are still some unknowns. For example, we know that none of the mucous producing cells in my body work very well, but we don’t know why. It doesn’t fit with any my existing diagnoses and I test negative for the only other diagnosis offered, Sjorgens. So I live with dry skin and dry mouth that destroys my teeth and dry eyes that cause widespread nerve die off and means I have to be very careful about caring for them because I can’t feel it when an irritant gets into my eye. The only other possibility offered to me is chronic anxiety destroying mucus function due to PTSD, which I developed as a child.

Today, it’s day 14 after the surgery and I’m home on the couch, completely exhausted and scared. I have some very, very bad memories, and at times like this I get scared. CFS and Fibro are diagnoses of exclusion. That means I spent years getting tests and seeing doctors. We learned things the hard way. Like that my liver doesn’t seem to work so well. Or that I’m allergic to opiates. I tried a lot of pain killers under desperate circumstances before someone figured out it was the whole drug family I can’t process. At one point, my health was crashing so fast and so catastrophically with no answers that a specialist warned me they might be figuring out what was wrong with me in an autopsy. My mother was told to be prepared for a funeral. There was so much fear. Bone deep, soul killing, trembling but nowhere to run, and no one to fight, and no point in screaming, and no escape, fear.

There’s host of horrifying memories. Lying on the floor vomiting due to an allergy to Digesic, stomach acid burning in the 6 stitched holes in my mouth, the sensation something like biting down on burning coals that don’t cool. Screaming, unbearable agony.

Memories more banal, the daily suffering. Not leaving the house in months except to see doctors. Being told everything was in my head and I just needed to exercise more. Passing out on the footpath while walking, trying to manage Depression I didn’t have. Endless rounds of job applications for work I wasn’t even slightly well enough to do. I remember months of severe dental pain, living on milkshakes and blended peas. I remember baths in my clothes so a family member could come in and wash my hair because I was too exhausted to lift my arms that high. Old friends asking me in bewilderment “What do you do all day?”, new friends telling me they wished they had CFS so they could have a holiday. Crying with frustration and wishing desperately for the day I would be well enough just to do half an hour of cross stitch a day, for my sight to return and the pain lessen and a tiny bit of energy to come back, not enough for a life, just enough for a tiny, quiet hobby to give some shape to the endless days. I would have given anything, just for that.

So there’s terror, and memories of terror, and a kind of survivor’s guilt. I know many people are still living in their nightmares, lives shortened by illness, chronic pain and disability destroying dreams and caging a big hopeful heart in a dark place.

Today I’ve been scared. I had a terrible down turn in my life after a surgery previously. It was to remove infected teeth, I was told the abscesses were drip poisoning me and I’d be much healthier after the op. Instead I had allergic reactions to everything and my health crashed. For the next few years I needed a wheelchair or electric scooter to be mobile most days, I was so exhausted and in such terrible pain. It doesn’t take much to bring back that fear.

So today I’m reminding myself that those days are gone. Even if I got really sick again, it won’t and can’t be like it was. I’m no longer lost and bewildered in a dark woods full of monsters. I know the territory now, I understand the need for grief, the place of rage and humour. I’m not being tormented by a mad lover or spending energy desperately trying to hold onto empty friendships. I have names for what is wrong with my body, I have a safe public housing home to live in, a secure income on welfare, a lovely doctor who looks out for me. The nightmare that scares me is just a memory now, I’m jumping at shadows. So I sit here on the couch with my white and orange dog, and we eat Zooper Doopers and watch Buffy and life goes on. The fear that was choking me settles. The trembling in my bones calms. This is my life now, and sometimes it’s scary or painful or hard. But those terrifying days of loss and torture are gone. I made it through.

Determination

Oh dear lord, that was a hard week! 8 days post op and I’m still having trouble with the pain, but my headspace is markedly better. It’s been so demoralising to be so sick and in such pain. ūüė¶ littered by all the ideas that haven’t worked, sometimes my future seems very bleak. I don’t want to live on support for the rest of my life but chronic illness just tramples everything I set up. So, I’m working on not failing my art classes at college, and I’ve been distracting myself by looking at pretty things on Etsy. It’s been inspiring. ūüôā I love sculpting my pendants and I’m really enjoying working in the smaller scale, which is good considering my studio space is very small at the moment.

I’ve also been lucky enough to arrange visitors every day, which has been really helpful, ditto actually getting out of the house here and there. Today I’m really excited about going to visit Sound Minds, the local hearing voices group. I haven’t seen them in ages and we set this date months ago. I’m bringing a very sad anime called The Children Who Chase Lost Voices to watch. They’re bringing ice cream. ūüôā I’m going to get through this!