Navigating overwhelm

Poppy and I spent the day together yesterday. We visited a festival in town, spent a long time learning how to cuddle bunnies, pat baby sheep, not to be scared of the chicks peeping.

It wasn’t one of the easier days. She had meltdowns about wearing clothes, and howled all through the bus trip because I wouldn’t let her kick the window. Sobbing hysterically on the seat next to me, wailing ‘Don’t touch me Mummy!’ as I dug deep for patience. There’s nothing like parenting an unhappy little person to make you doubt your competence! The best moment was when she was dancing to a choir, full of vim and delight and I could sit for a moment under shade and rest my tired brain from the high alert state of watching a small person running around an un-fenced area surrounded by traffic.

It wasn’t one of my easier days, wrestling a sinus infection and struggling to get up to date with the grad cert I’d been a late enrolment in… The challenge hasn’t been the content of the course it’s been the online format, which was a surprise to me.

So Wednesday for example I went into uni and hoped to get some work done after an appt, then discovered I couldn’t complete one assignment because the necessary information had been sent out prior to my enrolment, so I didn’t have access to it. So I hopped on a computer and figured I’d listen to a lecture, then realised I didn’t have earbuds with me so I couldn’t do that without disturbing others. So I came home and tried to access the lecture on the laptop I’ve been borrowing, but it’s embedded in a power point and the open office software messed so badly with the formatting I couldn’t follow any of the text. So I dug up a pair of earbuds and tested them in my phone to make sure they worked, then headed off to my office which has the microsoft office suite on my desktop. Where I discovered that desktops can’t process earbuds with inbuilt mics unless you have a splitter to separate the signals. So still no lecture for me. At which point I cried and came home.

The trickiest part is that I’m navigating these challenges I need to keep my mental space together. The more I struggle with things the stronger my sense of anxiety and displacement become – that I shouldn’t be in higher education, that I don’t belong and I’m going to fail (again). I’ve been talking myself gently through all the challenges for a couple of weeks and bouncing back well, but yesterday with uni and a work challenge not coming together I fell in a hole. I got back from my day with Poppy and couldn’t make decisions anymore. Should I try to get more done (everything is due on Sunday! and I’m late with everything!) or try to rest and clear my head? Bath for restoration or bed for sleep? Poppy woke me up hourly the night before and I felt like my head was a watermelon hit with a hammer. Am I getting sick with the cold everyone’s had, in which case this might be the clearest I feel as I go down over the weekend, or is this mostly sleep deprivation in which case don’t soldier through, rest and come back to it.

My mind obsesses about the problems, trying to solve them even when it’s clear I’ve no capacity left to think clearly. It adds in bigger, older ones I haven’t solved – what am I doing with my work life? How am I going to schedule everything? Where’s the next job coming from? Smaller problems get unimaginably large as the overwhelm diminishes my capacity. Everything clusters together into knots where I can’t assess priority anymore. It all feels urgent and impossible, the unmopped floors, the people I haven’t caught up with, the tax I haven’t quite finished, the assignments due in days… I notice the biggest anxiety is in thinking I’m supposed to look like I know what I’m doing but I’m scared it’s becoming obvious I’m unprofessional/incompetent/unskilled. I’m afraid this is the reason I’ve failed at all those job applications, and the more anxious I am that it’s my fault, the more desperately I try to show I’m competent rather than bewildered. A customer texts asking if I’m free for a gig and I seize up, unable to message back because I have a social engagement at that time and I can’t decide if I need the income or the time with friends more, can’t even work out how I would work that out, and my car died last week, very expensively, so if I say yes to the gig I’m also taking Rose’s car from her and making a choice about her access.

The longer I don’t text back the more my head is screaming with alarms about not being professional, and the worse the sense of failure and self loathing get. Once they are too strong, I can’t push through them enough to write back, can’t work out what to write, can’t make the decision, and everything I do, including continuing not to write back, is utterly utterly wrong, self sabotaging, and proves I have brought all the bad luck in my life on myself. I can see it happening but I’m swept along in a avalanche. Every move I make is wrong, and I can’t reach out for help because I think that’s probably wrong too. I open texts and messages and can’t work out what to write or who to send it to. I can argue all the cases (reaching out for help is a good thing, chasing being rescued is a bad thing, so and so won’t mind hearing from me, I’ve been leaning on so and so too much) and I can’t work out a fair or reality based guideline. I’m just lost and inclined to blame myself. My thinking spirals in on itself and the intelligence which is so useful and incisive in some areas becomes destructive beyond my control.

Overwhelm is such a huge part of dealing with parenting and mental health and yet I find it’s not talked about that often. It’s been a big part of my focus in my family for the past couple of months – what sets it off, makes it worse, makes it better? Carving up my life and rearranging it so it’s not part of my baseline anymore.

So yesterday I went to bed but couldn’t sleep, had a bath and felt physically a bit better. Visited friends for board games and found that I couldn’t do the games and run the mental programs of trying to figure out my study and business/work. That was desperately needed and nothing was engaging me enough to get me there until then. The mental break was restorative. Last night Poppy only woke a couple of times. Real rest, mental and physical. So today, I’ve read over the email from my lecturer that has bewildered me every time I’ve looked at it for two days and at last I think I can see what he wants, I think it’s just an odd grammar structure possibly part of English as a second language (wild guess on my part) where the the question asks What but really means How or Why. Maybe this is normal for public health? I don’t know yet. I’ll adapt.

These are the skills and patterns I need to get this cert. I am going to figure this out.

Deep breath. Soothing internal voice. We can do this. Back to it.

 

Strings cut

Yesterday, I got stuck. At the mid point between home and studio, I turned off the road and parked. Unable to decide if I should go forward or back. I sat for two hours, while the rain poured down. I could not work out what I needed. I thought of calling Lifeline, or a friend, I tried to formulate text messages or status updates. I listened and asked inside for clarity. I worked through various options like a game of chess. I got cold.

Poppy was in day care and didn’t need me. Star was going to visit but was unwell. Rose was going to visit but was exhausted and rough and needing alone time. I felt I should go home but was also afraid of conflict and tangles. I felt I should go to the studio but could not make myself travel further away from home.

I came home in the end and tried to sleep. Everyone else slept. A bone deep chill had settled into me, fully clothed beneath blankets I still shivered. I gave up and crept into a deep hot bath, trickling in scorching water until my skin turned pink. The chill finally eased and the paralysis with it.

I often do not know what to say, what I need, what to do. I feel like a puppet who’s strings have been cut. With Poppy I’m purposeful, her needs are clear and straightforward, they sing a song who’s steps I know and believe in. With Rose I’m tangled tangled tangled. I struggle to shake the feeling that I’m destroying my life.

I write text messages and don’t send them. I don’t know what to say. There are no words. I don’t know who to tell. We are so surrounded by love and I am afraid. I try to reach out and find my hand still by my side. Then the moment passes and I can laugh again. My life does not feel so broken and her smile is not full of the ruins of our love. My world flickers between broken and whole. Star drives away for the night and candles gutter out in my heart. Rose does likewise and my anger dies like a wind blown out. I do not understand anything, but walk blindly in fog. Poppy curls up in my lap, wraps her hands around mine. I smell her clean hair, soak in her sweet smile. I have never felt so ill equipped to keep her world bright. Yet I am doing it, following the tides, come what may, cooking, cleaning, cuddling. She animates me. I am hers.

When all the threads unravel the simplicity of story and roles gives shape to the formless and meaning to the obtuse. They hold me like a vase holds water, and I am grateful. The kitchen is clean, the child fed, not all the world is formless chaos. It will not always feel this way.

Rose is back

Rose is home but not home. She was discharged from the psych facility on Monday. We are doing something that seems strange to most, I’ve asked her to keep spending nights apart. Not because we are breaking up or she’s awful to be around, but because I am so burned out I am on the edge of my capacity to cope. The last time she had a breakdown, so did I. This time I have kids and I desperately need to keep my feet under me. I have had many warning signs I’m on the edge, difficulty making myself get out of bed, or force myself to drive home, lots of crying, episodes of screaming (when alone), intrusive thoughts, intense anxiety and irritability, insomnia. I love her to bits and I’m very empathic. I can’t go offline when she’s with me, I’m so tuned in to her distress I pick up on it and feel it all myself. When she can’t sleep, I can’t sleep. I’m always on duty. I’m also chronically triggered. My history involves a lot of caring, and some very painful memories are very close to the surface at the moment. Helplessness in the face of suicide attempts, profound loneliness, fear, horror, torment. At times I feel like I’m trapped in a cage that’s been dragged underwater, and I’m drowning. Love is the cage, and madness, or trauma, is the water.

Nights alone have been a powerful restorative. I have an evening ritual. I clean and organise and cuddle Poppy and feel at peace and connected. The next day I can meet with my whole heart, however good or bad it may be. I’m not scraped raw and quivering with pain. This was my greatest regret in a previous relationship, that I equated the relationship to living together, and thought leaving one ment having to leave the other. I wish I had left the house but used the time to work on the relationship. Without living with their demons, feeling so unsafe and traumatised, I might have had more success recapturing what we’d lost. I intend to learn from that mistake.

Rose and I did this for a long time during our dating too, we lived 10 houses apart on the same street. That blend of together and apart suited us well and we flourished. Two partners with PTSD is an unusual challenge and needs a very specific approach. We are currently hunting for a room she can rent close by to replicate that time in our lives. Part of my plan to get as much of my life back on the easy settings as possible. We are not sure right now what the future looks like or how long we will do this. We spend time together every day, as a couple and a family. We will keep moving forward day by day, getting back into routines.

There are many hurdles yet before us. Welfare is one, they refuse to offer any rent support to Rose unless we formally, legally break up – absolutely the last thing we wish to do. Community mental health services are another, severely lacking in a sense of responsibility, compassion, or even basic customer service. It’s been a tough week but it’s also been so good to see Rose out in the free air again. Even in such a short time, the weight of institutionalisation was so evident. Out in the world there’s something more adult about her, more dark and wild and free and grounded. I fall in love all over again. Her beautiful eyes, soft hands, kind heart. She’s been so lost at times but she finds her way home. Darkness tears gulfs between us. Love bridges them. She is so precious and I’m lucky to have her.

Crisis

My dearest Rose has had a breakdown, we are both exhausted and limping. She has been in a psych facility for over a week now. We were trying to manage the crisis at home while she crashed, until her distress became so intense she could not stop vomiting. 5 hours, 18 vomits later, some shots of anti-emetics and a lot of tranquillisers in the local ED and finally she could rest a little.

Our poor little family is shell shocked and run down. Our tribe has rallied and surrounded us with so much love and support. We have both doubted everything hard. Our case worker tells me simply – you can be the strongest, most resilient people ever, sometimes things just go wrong.

She is working so hard to understand how her world has collapsed, how to find her way back. Is she talking responsibility, a social worker asks me. I think of her desperately colouring in at 3am when the nightmares are so bad she can’t stop crying. Crawling into the shower clothed to find some kind of peace under the thundering water. They gave her a rubber band in the unit, she snapped it until her wrists bruised. Yes, I say, she is very responsible. She is overwhelmed. I am overwhelmed. Sometimes it’s more than we can bear.

I’m lying in bed so deeply sad it feels hard to breathe. I type messages to people and don’t send them. I look at blank status updates and turn away without words. There is an ice cold patch between my shoulder blades, radiating a chill through my back, into my chest, like a spike into my heart. Aching with cold.

We talk ourselves into hope. We talk ourselves into despair. Over and over. Holding tight, and on the edge of everything we have loved and built dissembling. We are on fire. We are broken and spilling into the night.

Rose has messaged me from the unit tonight. She’s vomiting again, chronically, and her blood pressure has spiked. They are taking her back to the ED. I feel broken. They plan to send her home in a week. I cannot fathom caring her, as well as my children, and myself. I don’t know how to keep us all safe. She is the mother of my child. The heart of our world. I love her so dearly. I am so tired. So scared, and so sad.

Bagpipes for lungs

I’d like to be updating you on my my projects, but it’s just my health. I got half way to the studio today before having a huge asthma attack. I had to choose between going to the doctor, the hospital, or home for my inhaler, or pulling over and calling an ambulance. Not easy! I started to go to the doctor, then changed my mind and came home. I found I could breathe provided I did shallow breaths through my nose. Rose met me at the door with an inhaler and we got the next appointment with a GP. He’s changed my antibiotics to a different type and said the ongoing infection is triggering severe asthma. So I’m now on a stack of new meds and a nebuliser. It’s going to be a fun night of waking every 3 hours to dose me, Rose has her hands full with me and Poppy to look after, and there’s the constant vague worry of trying to decide when it’s time for hospital. My chest aches and when I breathe I sound like a kitten attacking a bagpipe.

But, I’ve got a soft bed, Netflix, the cuddliest bug around, and hopefully I’ll be feeling better in a couple of days. Fingers crossed.

I’m so glad I’d already recently decided I can’t pull off a primary income for my family (at the moment). This time last year Rose was in hospital with a chest infection. My family has a lot of extra needs. I simply can’t check out for as many hours a week as a primary income requires. But I can focus on income streams where I can shine even when unwell or on call as a carer. But what I can do is take the pressure off a bit, earn enough to keep my studio open, help with medical costs, afford my shrink. It’s not what I was hoping. But it’s a lot better than banging my head against a brick wall every week. At some point you just have to adapt! It hurts but it’s also taking a lot of pressure off me. I’ve sold four artworks this week, booked two face paint and glitter tattoo gigs, and things are going well despite coughing up a lung. I still have my art residency with SHINE SA and feel a great sense of belonging with that community. A career doesn’t have to be primary to count. It’s isolation that does so much of the harm. I was thinking of the years I’ve spent hanging around mental health organisations, and how it’s been within a sexual health organisation I’ve finally found a genuine understanding of diversity, and a sense of being valued. I’ve got art exhibitions planned and some in the works, and as soon as I’m better I’m going to finish and show you this beautiful handmade book I’ve been working on. I feel terrible but I still feel part of life and that’s so precious to me. ❤

My interview about DID in the ABC

Last year myself and two other systems got to know journalist Tracey Shelton. She’s a fascinating journalist with an inspiring career and she was taken by the stigma and lack of good information out there about multiplicity. It’s been wonderful working with her to put real and human faces to the experiences. Her first article about it has been published today.

Dissociative Identity Disorder: what it is like to live with multiple personalities

The interview process itself was immersive and in depth, exhausting and inspiring. It was a huge behind the scenes project last year that is just starting to bear fruit. It was such an honour to hear in depth from other multiples – not since the days of the support group Bridges I used to run have I had such experiences. Can you imagine that? Consider for a moment that you are gay and almost never meet or speak with another openly gay person. Or Christian, or adopted, or a wheelchair user… All people are different and diverse in some way and having a connection to peers is invaluable.

The connection and support I experienced during this project rekindled my own efforts to humanise multiples. I have spoken just this week with a delightful editor who offers mentoring to get projects – such as my introductory guide to multiplicity – to the finish line. There’s many peers, advocates, and activists out there and in the Dissociative Initiative, all saying the same things: multiples are human. We deserve support and we shouldn’t have to live in fear. I’m so proud to be part of that message. ❤

To read more, follow the link above to the DI website, or check out my articles about multiplicity.

Transformational Breakdown

Hi everyone, I have so many half written posts in drafts at the moment it’s ridiculous. 🙄 Life has been weird lately. My psychologist called it ‘a transformational breakdown’. Haha. That means it feels like we’re having a breakdown, giving birth, and blooming at all the same time.

One night this week we got very cranky while making dinner, drank a bottle of cider, switched to kids who felt stupidly ill because of the alcohol (multiplicity can be dumb that way) then found the couch, a blanket, and Star Trek Next Gen. There’s been a great deal of being very grown up lately and frankly it’s not all that good for us. One of the funky things about our system is that we can kind of shift into whoever is most needed. So if or family need someone unafraid to take a spider out of the house without making fun of them, we can be that. And if someone needs a whole lotta nurturing we’re pretty good at that too. Or research, or arty days in the backyard, or being firm about boundaries or whatever. There’s some things none of us are good at (coughadmincough) but we can adapt and respond to what’s needed of us, at least in personal relationships.

The secret to making this work is kinda the same as the secret to making parenting work for anyone – looking for that Venn diagram overlap area of where your needs and the needs of the kids overlap. If you just meet their needs all the time you burn out. If you just meet your own you’ve got a kid in a 10 hr old nappy. But there’s a kind of dance to figuring out if we all go to the library on Tuesday that will give the eldest time to get books for her homework, we can borrow a new Charli and Lola for the little one and I can pick up the book of knitting patterns and start Grandma’s present, the kids need to get out of the house but I’m really tired so I’ll take them to the playground next to my friends that’s fully fenced so I don’t need to chase them and see if she wants to catch up for coffee…

Of course it can’t all be overlap. Sometimes you do things simply because they need to be done, like dental appointments. Sometimes it is about one person’s needs – there’s no other reason you’d go to a dance by 6 years olds or listen to someone learning to play the recorder. 🙂 There also comes a point where we just need to do our own thing. We lived alone by choice for ages because being hooked into roles and having switches triggered by people around us was tiring and overwhelming. When you’re busy turning into what you think people around you need (or will like, or love) it’s hard to have a sense of self identity, to know who you are or what your own needs are. That’s true of everyone, although perhaps in our case a little more blunt. Sometimes you need to have nobody need you and to just see who turns up. Systems are self balancing, to the best of their ability, they switch out who they think needs to be out. My family are never going to need my poet but we need them out because they take care of our soul and renew our spirit.

We can’t live life with one part forwards all the time without losing out on so much of the world. No one can look at the world through one pair of eyes, one archetype, forever, without missing so much. And while it’s a gift to be able to tune in to what someone else needs and turn into it for them, it’s also a kind of cage if not attended to with some care. Sometimes you need to annoy or even embarrass each other, to be weird, different, inconvenient, and entirely moved upon your own tides. Blue lipstick days. I’m here for you but I’m not here for you, owned by you, of you, made to fit your empty spaces. I’m stranger by far than your dream of a perfect partner, parent, friend, guru.

I don’t buy the dichotomy we’re presented with – that I can be the best ever carer or I can care for myself. To choose between tuning in to another’s needs or my own. We do not recover well when our carers are in crisis and suffering. We are bound in their cages and suffer with them. If I wish to be deeply attuned, my own heart calls too. My life calls too. It’s not one or the other. It’s to listen or to not listen.

“Nothing has a stronger influence psychologically on their environment and especially on their children than the unlived life of the parent.” Jung

So, I am home, finishing EOFY business admin, having meltdowns, having awful fights with Rose because we’re stressed and broke, feeling trapped in the domestic role I never wanted. Hanging washing and more washing and having strange panics about the cleanliness of the house as if attention to the kitchen counters has become a metaphor for how loved I feel, whether my needs are also attended to. I read blogs about autism and books about giftedness and articles about eating disorders and synthesise it all into a treatment program that is working brilliantly, and at night I lie awake hating myself for not being at work.

There’s hope for us. Today we took a break from the hideous interminable admin to chat with a friendly editor and mentor about our multiplicity book and imposter syndrome and how a blog feels generally manageable but a book is something more formal, official, tangible and we can’t quite transition, can’t quite stop researching and let it be a thing, incomplete and unresolved but good enough as it is. She laughed and we laughed and there was more common ground than difference. She reminded me a little of my late friend Leanne, who was also an editor and would have loved this project, if I’d been brave enough to tell her we were multiple while she was still alive.

We are doing well. I am hysterically exhausted. Star is thriving, Rose has been terribly ill with migraine and ear infection but is finally recovering, Poppy is currently unwell with a chest infection and I’m getting very little sleep.

I have withdrawn from work but I’m also hard at work on a new business model and I think I’ve finally cracked something I can actually do for the next 6 months while I’m also on call and caring so much… which is profoundly exciting.

And I’m still working on a new exhibition for later this year. Holding onto bits of my own stuff and upskilling rapidly in how to run a household with multiple disabilities and challenges in a way that everyone gets what they need – including me. We are still here, still together, holding on. Still kind, still in love, still hanging in there, still believing in better days.

I have no idea what’s going to emerge, but I hope the damn ‘breakdown’ part eases up soon.

Sometimes vulnerability is the way back

I’ve had a difficult couple of weeks. Stepping away from work has plunged me into terrible depression. Carer burnout kicks in fast, in the form of long mornings frozen in bed, unable to start my day, long crying jags, flashing irritation, suppressed resentment, and profound self loathing. Fear, frustration, and hopeless despair struggle for the upper hand. I’m caught by the chilling awareness of my own broken places, the insanity of my phantom terrors. Just as surely as I know the things I fear are not real, I am seized by them. Obsessed with them. Simultaneously tortured, and humiliated by my torture.

I believe in welfare, believe in care for the poor, opportunities for those of us with disabilities, I believe in dignity. Yet I am drawn helpless, over and over again into a false but compelling sense of my own failure. I am home taking care of my beautiful girls, yet without the prospect of work and career I feel worthless beyond redemption. I had my chance and I’ve ruined it. I’ve let down everyone who’s ever helped me. I have no excuse for such chronic failure and underachievement.

In darker moments I believe everyone I know is secretly disgusted and embarrassed by me. I am in anguish trying to prove I am worthy, that I have tried hard, that I am not a lazy, selfish, useless bludger. The pain is hard to describe, it’s searing, like a hot brand across my face. It’s deep into my soul. It’s a frighteningly powerful delusion.

I’d not thought of it that way before this last week. I’ve turned my mind to a serious challenge – understand the territory Star is lost in, and devise a way out for her. And we’ve done it. Setting ourselves the task of reading a book or 12 articles about autism or eating disorders a day, we’ve absorbed enough to tailor a treatment that’s so far worked spectacularly well. I am so relieved I can’t put it into words. The sheer joy of watching the colour come back to her checks and sparkle to her eyes is magic.

And instead of proud of myself I am devoured by self hate for quitting work, for being poor, for needing support. I’ve never thought of myself as delusional before, although I understand that it’s how thinking works. We all construct tiny models of reality in our minds, none of them vast or complex enough to capture the real thing. We are all deluded. And like all delusions, knowing it’s false isn’t reassuring, it’s just frightening and painful to have been so captured by something that isn’t even real. It’s a very lonely place to be tortured by your own mind.

We’ve been reaching out more than we usually do, sharing more than we usually share. And it’s helping. Also spending time with friends helps me box back up the dangerous whirlpool of thoughts that snares me. Don’t think about work, don’t try to problem solve money or career. In company I find it easier to compartmentalise it. It gives me breathing room.

In vulnerability I seem to be letting out some of the poison. There’s a kind of awkward confession to it. Having friends share their own madness with me, offering reassurance without expecting that to fix it is healing. Finding a way to put words to my terror of being judged by family and friends and feeling (not seeing because I can’t bear to look but feeling) them wince in pain from the ‘couldn’t be further from the truth’ madness that has me standing on cliffs, running from invisible nightmares, changes something in me, slowly. If the reality checking is sensitive and loving it helps. We know this from psychosis and this process feels exactly like that one to me. I’ve been here before in other ways, not beliefs but senses tangling my inner and outer worlds. The impossible dual truth I have to find a way to hold in my mind: it’s not real, but it’s real to me.

It’s not real that my friend loathe me, that I’m a useless failure, that I’m lazy, not trying hard enough, pathetic, a disappointment. It’s not true and I know this. Yet it’s profoundly true to me, and that must be acknowledged too. Knowing it’s not real doesn’t make it go away.

I’ve shared my distress with friends and family, unpicking it despite the insanity of it. The more I show to safe people, the less it bleeds. There’s no need to tell me how crazy this is, that doesn’t ease it. But being safe to be crazy in front of, that’s a balm when your mind is on fire. I know it’s not real, hold me anyway. Hold me. I’m in so much pain. Hold me.

Friends share their own madness, the terrible shame of poverty, disability, or loss. I am less alone, not the only one on fire. Everyone burns somewhere in the night.

Last week a younger member of our system shared her name with a close friend – the first person apart from Rose who knows her name. We tried this once before, different part, with our therapist. It felt like being shot in the chest. A kind of death. This felt nothing like that. It felt like planting a new flower in a garden. Natural, simple, simply the next step. No one was shot, no one panicked. One step closer to a life that doesn’t feel like hiding in plain sight, hoping for closeness while holding everyone back. Each step brings us closer back to our self. We get windows of time with no fire or pain. Time like normal time where we can breathe and plan and live. The darkness retreats to the edges of our life.

We have a new psychologist and we’re talking about things long forbidden. Not trauma but something for us more vulnerable and unspeakable – giftedness. The potential and the vulnerability of being gifted, smart, capable, and utterly different. Repulsed by elitism and afraid of others’ discomfort and envy we’ve refused to even think about it most of our life. Now we’re reading about people who are strange like we are strange, people who can write at a PhD level but can’t make it through an undergrad program. We’ve opened the box and are using the words and into this unfamiliar space comes grace and gentleness. My terrible fear: that being smart means I should have figured out work and shouldn’t be on welfare, is gently tipped over. Not only is it okay to be smart and need support, being talented itself can be a difficulty for which you need support. I find it easy to do things other find hard, and very much the reverse. I thrive with intellectual challenges and emotional and creative expression. I die without them. The very thing that caused me problems applying for jobs (advised to downplay academic achievements, remove training from my resume, constantly told I’m overqualified despite having no qualifications) is a difference that brings its own problems. Most forms of diversity operate in practice as a disability. I’ve walked around for years with my wings bound, trying to hide what I can do so people will be friends with me and not hate me. If I switch the word gifted for anything else, say, multiple, queer, invisible illness, chronic pain, mental illness, I can taste how sad that is, how much it hurts, how concealment breeds shame.

We steer our ship by desperate, painful questions, ‘why are we the way we are?’ ‘What do we need to thrive?’ ‘Is it okay that we are on welfare?’ For the first time in 10 years, we can sometimes believe that yes, it is okay. We have done our best, done well, not failed, not let anyone down. We are okay. It’s okay that we need support. We are okay just as we are.

Star is having rough time

It’s long past time I did an update about Star. It’s not easy to write and this is about the 5th draft I’ve worked on. First – the good news. We have had the first stable week in 9 months, since I quit work, pulled Star out of school, and started an intensive treatment 10 days ago. She has responded to it magnificently, we are already seeing improvements and are ecstatic to have found the right track at last. We have a team of support personally and professionally and we will continue to refine the approach over the next few months of recovery.

The knee injury last year started a mental health decline for Star that we have struggled to stop. She faced multiple challenges across many life areas – busting up with her boyfriend who went on to date the girl who injured her and then denied it. Having her reputation harmed by a boy who lied about her. Being ‘slut shamed’ by a group of guys who bullied her. School went from being her safe place and haven to a misery. Her mental health disintegrated and she found it harder and harder to eat, drink, and look after herself. We wound up in medical crisis with chronic dehydration and lack of food, the start of purging, warning signs of heart problems, disrupted sleep, mood, thinking, and memory. We tried lots of approaches which didn’t work, or didn’t work enough, or even made things worse.

The approach that is working is called Family Based Treatment (FBT). It’s intense and at times incredibly stressful. Star is with someone at all times, and required to eat 3 meals, 3 snacks, and drink 6 cups of liquid every day. Sometimes that is pretty easy and sometimes it takes everything.

We have bounced around the public mental health system, through emergency departments, ACIS, SEDS, a number of possible diagnoses and various specialists using the money originally fund raised for her knee surgery. We are making progress on the jigsaw puzzle of how we got to this level of crisis and what to do about it. There’s a number of diagnoses being explored to help us develop the best approach. It is looking likely that Star is autistic – something often missed in girls because it presents very differently to boys. The chronic strain of trying to cope with and hide differences such as her sensitivity to noise, difficulty with change, and a very literal approach to communication has taken a toll on her mental health. We are currently in the process of formal diagnosis with a specialist psychologist.

She is also likely dealing with a type of restricting eating/feeding disorder called Avoidant Restrictive Food Intake Disorder (ARFIDS) which in her case means her sensory issues with with things like the texture of food have led to huge food and fluid aversions. Most of us can make ourselves eat or drink something we don’t like every now and again. In Star’s case her aversions have been getting much worse over time, and after a while it simply becomes impossible to make yourself eat and drink when you find it revolting and distressing. We are working with a team of people to help tailor the Family Based Treatment around these issues and hopefully she will not just become more medically and psychologically stable, but we will also be able to help her desensitise so that the whole process of eating is much easier and she can be back in control of it herself. Our backup plan is inpatient treatment in a hospital interstate. We are also digging into her long history of digestive issues (she was premmie and very unwell as a child) and gathering scattered medical records to try and understand these issues better. It may be that something such as a food allergy has been missed which is causing chronic pain and nausea. The more we know the better we can tailor the treatment.

Eating disorders and restricting are often very difficult to understand, for the person who is struggling with it as well as others who don’t know what it feels like. There are a lot of myths and misinformation out there which make life a lot harder for everyone. Star is not merely being stubborn or in a power struggle with us. Star has a strong needle phobia and yet at one point recently was submitting to a blood test in the emergency dept rather than drink a sip of water – it is that powerful and that hard for her at times.

I have had to overhaul a lot of my parenting approaches and go back to a basic principle of ‘do what works’. Our gentle trauma informed care approach has had to be modified to fit a very authoritarian ‘I know better than you what you need right now’ approach as the starvation has a severe impact on judgment. Watching Star sit in medical appointments apparently indifferent to the health risks has been chilling. And so far the signs are all extremely promising. We are seeing significant improvements for Star already. She has worked incredibly hard – all meals and drinks taken in and no purging. We are seeing signs of our bright bubbly girl again.

It is not Star’s fault she has struggled with this so much – that sounds so obvious and yet when faced with someone who seems simply stubbornly unwilling to take a sip of water, it’s hard to remember that no one chooses to have an eating disorder. She is a brilliant, diligent, caring young woman, and devoted sister to Poppy. It has been a roller-coaster for the past few months and I expect it will be more the next few too. But right now, the signs are good that we are on the path out of this dark time in her life.

Muse Magazine Interview: A day in the life of a multiple

About a year ago I was interviewed for the launch of Muse Magazine about my experiences with multiplicity. I was holding off on sharing until they put the article online, but there’s been a hiccup with the mag (hopefully temporary) and it still hasn’t happened. So I wanted to share part of it, I was asked to write a snapshot ‘day in my life’:

Beautiful artwork – not mine though

A few days ago, I was struggling with severe stress at work. My partner, Rose, is worried about us. She’s looking after our baby, Poppy, on standby for supportive phone calls all day. I have a very stressful meeting that doesn’t go as well as I’d hoped. I feel numb and dissociated. There’s very few private places for me to call her. I sit in the empty foyer and phone. My system switches through several people who handle situations where we feel powerless, unsafe, unheard. We are all numb.

Rose is gentle on the phone, human and safe. She directs us outside. We go and stand out by the gardens and the numbness eases. Switching rapidly between parts with different emotional responses and needs, we pace in a circle by the garden, debriefing on the phone. Rose holds the space for us. We calm, like a flock of pigeons that flew up into the air in distress and now feel safer and return to the ground. We can advocate for ourselves again, contain the feelings, feel less frozen.

That night, Rose has a trip planned. I’m home from work and the autumn sunlight is calling to us. I need to be outdoors, I feel dissociated and airless inside. We text our elder girl, Star and arrange to collect her after school from a bus stop in town. We pack nappies and snacks and jumpers for everyone. Rose drives us all into the hills to feel the wind on our faces. We have the windows down. I sit by Poppy in the back to keep her settled. Our primary parent parts watch her tenderly. After a while she starts to wail and can’t be settled. Star needs the toilet.

We reflect inside how we are parents now, not lovers to wander where we will. Now there are noses to wipe and people with short attention and many needs. Rose stops at a park in the hills. I’m enchanted by the trees and switch to a 12 year old who adores trees. Star comes back from the public toilets stressed because the walls are covered in millipedes and she’s afraid they will fall on her. We switch the ones who are frustrated, who want her to be different than how she is away to the back of our system. Gentle parent part comes forward and walks to the toilet with her, feeling for that place between compassion and encouragement. Inside us the child yearns and watches the trees hungrily. The toilet trip is a success. A frustrated part comes out and silently takes a millipede off the wall, not to stress but simply to show that courage is a good thing in life, that the danger is not as bad as it may feel.

For a moment no one needs us. The child switches out, takes off our shoes, runs to the trees. Presses his face against the bark and feels webs in his eyebrows. Feels dead leaves underfoot. Feels human.

Rose calls out for our phone. Poppy is being adorable and she wants to take a photo. We switch to parent again and walk over. Then back to child, enchanted by the sunlight through the leaves. He points it out to Star, but she is feeling cold and goes to sit in the car. Still learning how to be free in these places. Rose comes back with a bag of snacks, shares chocolate and strawberries. The light changes colour. We switch. The carousel inside turns. We soak up life.

Switching is different for all multiples, not everyone switches this quickly or this often or has this number of parts. Some have many more or far fewer or they are all the same age or they switch only every few months or once a year! Please don’t take my system as the ‘norm’.

But that snapshot is quite normal for us, a group existence with many, many switches every day, often quite brief, and frequently triggered by what is needed from us by those around us, or what calls to us in our environment. A carousel that keeps turning.

Hope for self hate

I’ve been reading again, avidly, using apps on my phone and ebooks. (Poppy destroys physical books) It’s wonderful. For fiction I’m reading works by Tanith Lee, Patricia A. McKillip, Jonathon L. Howard, Sonya Hartnett, Matthew Hughes… For lovers of multiplicity in fiction I highly recommend his Henghis Hapthorn series!

Nonfiction I’ve been reading about scanners in books by Barbara Sher, rainforest minds (a guide to to the well-being of gifted adults and youth) by Paula Prober, and The Artist’s Way by Julia Cameron.

Giftedness, scanners/polymaths/multipotentiates, and creatives are all areas I’m exploring. How do other people function? What kinds of work are they suited to? What are their vulnerabilities and how do they navigate them? I enjoyed reading this article of career advice about combining different skills by the cartoonist behind Dilbert. This quote in particular resonated with me:

The weakness of an art is its dogma. And when I’m competing against an individual from a different discipline, I try to find the dogma of that discipline. When I’m competing with someone within a discipline, I try to find their personal dogma. — Josh Waitzkin, Chess Grandmaster & World Tai Chi Champion

How fitting, and fascinating. I recall when I was wrestling with my sexualities in counseling, being revolted by some of the ideas espoused by the facilitators of the local support group for same sex attracted women. I was disgusted by the use of the word ‘het’ as an insult, by bi-erasure, and what felt to me like being indoctrinated into a culture – what music I was supposed to like, clothes to wear, how to style my hair. A closed and exclusionary world. It took me a short to move from deeply intimated and anxious/submissive to stripping away the dogma and embracing the beautiful history, courage, and love that is the best of queer culture. And wearing my hair however I damn well like.

So I’m moving past dogma in other areas and reading about people who are hypersensitive, intensely emotional, rapid learners, who constantly seek challenges and struggle with anything once there’s little left to learn. It’s been quite profound. Scanners as label warms my heart, partly because it’s not linked to anything as complicated and grotesque and risky as IQ, with all the challenges and misunderstandings we have about intelligence and human worth.

It’s a box I’ve left closed for a long time. Opening it has been fascinating. The most interesting outcome so far has been the first shift in my voice “I hate myself” that I’ve experienced in many years, a sense that beneath the rage and self loathing lies a different truth altogether: “I don’t understand myself.”

So I’m working to create a new space. Currently I’m most overwhelmed in the area of work/business/career. I am polarised between being barely able to think about it, and drowning in total overwhelm. I’m using my Morning pages (3 hand written pages about anything, a reflective tool suggested by Cameron) to wrestle a new space: gentle curiosity. Why am I blocked? Where is the pain and fear coming from? If this (life, work) was set up perfectly suitable for me, what would it look like?

It’s always an amazing experience, reading about yourself in others’ stories. It’s happened for me many times: reading about PTSD at 18. About attachment disorders, about victims of abuse. In some ways about multiplicity but mostly I didn’t fit the dogma and common stories there. About queer identity. It’s been some time since I found myself reflected in another face. Reading about scanners and rainforest minds has been the most hopeful thing I’ve found in a long time. There are many other people out there like me in these ways. Brilliant people who take 15 years to get an undergraduate degree, or never do. People who thrive on challenge and are constantly being told to slow down. People who can tie themselves up in moral knots so tight they can’t breathe. Obsessives who can’t “focus” and want to explore everything.

And just as I’ve done with being queer, or being multiple, they find friends who are not threatened so they can shine and struggle. They find careers that are good enough and leave them time to explore, or that embed challenge and variety and meaning in them. They stop trying to be what they are not, and learn what they are, and work with that. Which exactly what I’m trying to do. These books give me hope.

Cookies and campfire

Surfacing from the terrible week, my mind has been clearing. Today it offered only a handful of “I hate myself”s almost like afterthoughts. I’ve been noticing that there seem be to be a particular vulnerability around an bring to do with work or my business. I feel fragile but settled and even joyful.

Yesterday Poppy and I painted in the backyard. She chose a pearl purple paint at Officeworks the other day and spent an hour exploring how it changed her paint water and running it through her fingers. She painted my hand with her finger with such careful seriousness, the moment felt profound. I’m so glad to be a parent, to have these precious girls in my life.

Today we had my birthday party, a backyard campfire with cookies. I decided on cookies because it was much easier to bake a range to fit various dietary needs, and I made large batches and sent gift bags home with the guests. It was such a joy.

Our baker has not been out in awhile, in fact few of us have been out except for the one being totally overwhelmed, and switching was wonderfully liberating. There’s a common misconception that multiple can simply switch out whoever they want, or get rid of anyone being inconvenient. Few systems work that way, and constantly suppressing inconvenient parts tends to have its own downsides. Having someone distressed stuck out is horrible, but it does happen. It has been a relief to get a break from it here and there and see the world through different eyes.

Our baker wanted to make everything, spent a happy morning writing a huge list of everything she c felt like baking and narrowing it to 5 recipes, compiling the ingredients list and cross referencing with what we already had in the house. We made dairy and gluten free peanut butter chocolate cookies, gluten free gingersnaps, regular anzac biscuits, and sugar free banana date balls. We baked spuds on a fire and folks brought toppings with them to share. There were marshmallows and cold drinks. The kids played on the play ground or in the loungeroom with a train set and toy kitchen. It was happy mayhem for the most part.

Birthday over for another year. Thank goodness for that. Hoping this week is better.

On Loneliness

It’s my birthday again. I’m 35 today.

I’m not very good with birthdays, I’ve been stressed and tangled all week.

I was a very lonely child, friendless for much of my childhood. Periods of respite usually ended in disaster or betrayal. Loneliness was a great threat to my life for many years.

Birthdays seem to distill that time for me, plunge me back into it. I find myself paranoid and uncertain. Am I loved or merely tolerated? Do people care about me or simply feel obligated?

I freeze and panic. In my efforts to hide the overwhelming fear, pain, and self loathing of being unwanted, I’ve been told I greet friends with anxious preoccupation, react to well chosen gifts and thoughtful gestures with dissociation that presents as indifference. Every year I try incredibly hard to signal appreciation through my fog and I almost always fail.

I can’t stop hurting and I drown in shame.

I’m crushed between opposing needs and desires. Simple dilemmas leave me paralyzed. I want a party (but how ridiculous, at my age) but I can’t bear the risk that no one will come (there were many like this). Almost all my friends struggle with anxiety in large groups, so I want to keep it very small, but I’m overwhelmed by the image of someone not being invited and feeling left out and hurt, as I was, so many times. Half the people I love are not friends with the other half – a common problem made more intense by multiplicity and the wide range of people we connect with.

Each year I try to make sense of it, find a path through. I think I’ve done it but the year after is just as bad. All week I’ve been drowning in a voice that says “I hate myself”. Everything inside me is raw with shame and I can’t stop it. I do not want to be this vulnerable or have these memories. I second guess every decision. I just want to love and be loved, but I can’t trust anything. I can’t resolve the pain, can’t make it go away, can’t embrace and express it.

Nothing that happens now will ever take away the pain I knew then. I had parties that were well attended by children who tortured or could not care less about me. I had parties no one came to, or a couple of kids who didn’t know me bribed to come out to the movies. Birthdays were an annual accounting of my life: had I yet cracked the code of friendship and persuaded anyone I was worth caring about? Was I still the only freak on the planet?

The memory of that loneliness is so strong and so powerful for a week every year as well as the odd bad day here and there I am subsumed by it. I cannot feel touch or bear eye contact or believe in love. I walk about in a gaudy mask of my self, performing social acceptance and friendship, consumed by fear and self loathing and shame. My friends and family reach out with kind gestures I do not trust, and we do not speak of the stones in my mouth because above all I learned one thing, one cruel thing that fuels my current dilemma.

It is suicide to speak of loneliness.

We do not name shame.

You must pretend to be without fear, to feel no pain. To betray your wound is to be forever rejected and cast out. It is like the stench of rotten offal. Unless you learn to hide this very, very deep, no one will come near you.

Humans are cruel. Nature is cruel. The mother duck does not wait for the sickly infant, she leaves it to die. There are wounds that trigger compassion in others, and those that trigger recoil. Loneliness is like the mark of Cain, it tells a person you have been rejected by your kind and found unworthy of embrace. It is the red of a poison mushroom, the stench of a dead fish unsafe to eat.

‘Fake it until you make it’ the advice that leaves you hidden even from yourself. Learn to hide the flinch and the yearning. Don’t embarrass yourself. Some years it was only the doctors who touched me. Some years when a stranger sat beside me on the bus, the unfamiliar intimacy would turn my whole body pink on that side, my skin hot.

I lived inside out, the reverse of everyone I ever met. Deepest feelings on show, longing for closeness. I had to learn to turn myself right way round, to show skin to the world not soft viscera. To be patient with the pain and rebuild the layers of my world slowly, slowly.

My world was poisoned. I was a queer, bookish, freak in a tiny, regimented, religious hell where suicide was an unforgivable sin and nearly everyone I knew was unbearably lonely. They performed community, performed family. They were dying inside. I was dying. I wanted to die, rather than grow into a world this full of secret pain. I was surrounded by people every day of my life, and so lonely I wanted to die. None of us knew or one how to learn how to create safety, how to cross the voids, how to make each other feel seen, how to stop the bleeding and the quiet despair.

I grew up in a world where to grieve was to spit in the face of God. So we were always grateful and only our shadows grieved.

I grew up in a world where sex was sin, and love was duty, and to lack friends was proof of some fundamental flaw in you that you must work to overcome.

I am not lonely like that anymore but the memory of that loneliness is so powerful sometimes it feels like the only unquestionable truth of my life. The foundation of my existence.

I am not the only one who grew up in those places, not the only one to be stung by their own strangeness and the need for conformity and normality as the platform for acceptance.

Now, as adults those of us who survived are trying to knit community and diversity together in our own ways, with tools found washed up on the beach and precious few guides. Is this what it looks like to be loved? Is this the shape of your love? Is it that you touch me or I dream of touch? Am I safe now from rejection or if I show this scar will I be scorned? If I bleed when you hold me, will all the faces turn from me? Are you here because you love me or feel pity? What does your silence mean? What am I not saying in my own?

We question not just ourselves but each other – do I really want you? How much do I care about you? How long do I keep holding a space for you? Are you worth the time and energy I invest in you? All these calculations going on in secret, in a context where we can’t even admit we are lonely. And the loneliness of relationship – I don’t let you in to ease my loneliness, but if I do will you hurt me? I am bound into relationships everywhere and I can’t breathe or remember my name. Intimacy remains a gift out of reach or saved for the rare days – hospital, funeral, loss unlocking hearts for a short time.

The alchemy of friendship is strange. The balance of secrecy and openness, the rituals of sharing, the shift of each character closer to the other. The way we try to steal what we are afraid to ask for. The way we only speak of loneliness in the past tense, an old burden now resolved. Most of my heroes are lonely. I’ve spent my adult years building and then trying not to tear apart my community.

What forms a friendship? Proximity is cited most often, yet my childhood was a hell of bullies and emotional vapidity. Proximity to what, exactly? A hierarchy so brutal otherwise caring children sighed with relief that the position of social outcast was filled? That was my role, and it was essential and more complex than anyone let on. I felt not just my pain but all pain. Not just my horror at rejection but all fears of being found unworthy. I heard the bullies secrets, felt the loneliness of the adults, the secret soft pains of other children who did not fit. The structure that rejected us depended on us, needed us there to bleed for everyone, to feel the forbidden things.

Like ducklings abandoned, those of us rejected often die or self destruct. My early role of social outcast had in truth, very little to do with me as a person. The structure of that social dynamic demands an outcast. The child deemed least precious or most different is the likely candidate. It’s not personal. It’s driven more by survival instinct than malice a lot of the time. It was no more intended to leave life long wounds than when I come home from a bad day and am mean to Rose. Or the time I pushed away a friend who had poor boundaries after crashing with PTSD. Loneliness doesn’t mean we are safe or that we embrace affection.

Connection is strange because we also fear it. We both pursue and run from relationship. We don’t perform community, this is simply the best community we know how to create, with all our ambivalence tangled in. Come close, but not that close.

My Mother used to run classes for very young children. When teenagers would come to help there was one lesson she would teach them. If they could grasp it, they could stay. If not, she did not want their help.

The child who is most adorable is the one least needs your attention. The one you gravitate to, want to hug and sing to, who radiates vitality and affection is a well loved child.

The child who you feel uncomfortable around needs your time. The one with snot on their face, glue in their hair, getting in trouble for pushing the kid next to them. The one who doesn’t know how to signal for affection, who’s nervous system isn’t wired to dance in a feedback loop of connection but makes you feel jangled or frustrated. This is where love is needed, where it doesn’t want to look.

I received an email from a reader a little while ago, thanking me for this blog and telling me that they’d noticed since I was taking on more freelance work I was withdrawing from sharing certain kinds of posts. Drowning in that culture of success worship I was afraid to show my underbelly. How do I show a potential customer or client I’m competent if they’re reading about me weeping and sleepless at 3am before a morning meeting? Like loneliness, it’s poison. We don’t speak of it.

My reader understood, but they also said they’d miss the raw posts. I’ve been thinking about that for months.

In an online business group recently we were asked to sum up our business or work in a single sentence and finally something emerged. The heart of everything I do, the thread linking so many different things is about preventing loneliness. To know you are not the only person to think that, feel that, have been through that. To hurt, hope or need what you do. The common thread of humanity. That is what I do.

This morning I stood naked and sobbing in my back yard while my family slept. There’s a screaming pain in me I can’t speak to, it will not be expressed or comforted. Barraged by inspiration but drowned by doubt I can barely breathe or move my hand to paint. Self hate bleeds the life out of me. I have no answers. I want so much better than this. I will hold on and it will pass again. There’s so much life in between the shadows. Some pain you just wait out.

Oil paint swatches

My freelancing group have reminded me that if I’m stuck with the downsides of freelancing, it’s best if I really exploit the upsides such as flexible working hours. So I slept in until midday today, worked from home for a few hours, then went into the studio for a bit. It was delightful. I cleaned and organised, and planned to do some gilding I’ve been needing to find time for. But I really wanted to play with my new restricted palette and I decided I’d done enough stressful things today and could reward myself. So I took this lovely print of a Waterhouse painting, and I mixed all these colour swatches as if I was going to paint it. This colour mixing process works brilliantly for me, I’m so pleased. I’ve decided to start talking back to my limiting anxiety and tell myself I can reach the heights of any skill or profession I apply myself to. It’s helping undo a lot of blocks in my head, I can learn better and think a little more clearly. Every moment of that is a blessing I treasure.

I’m also starting new classes this week, courtesy of Rose. Meditative wood carving lessons, which she thought might help my anxiety. Looking forward to it.

Endurance

I have lost my bounce back after too many crises this week. I am tired and angry and depressed. Every member of my family has been in crisis or the ER at least once, and my sleep has been badly interrupted.

Yesterday, Rose was cooking dinner with her broken/damaged ankle and using a chair to sit at the stove. She tipped a pot of boiling water and spaghetti into the sink. Some of the water caught in a bowl in the sink. Poppy climbed the chair like lightning and dunked her hand in the bowl of boiling water.

So, I sat in a cold bath in my underwear for 20 minutes with her, nursing and keeping a hose of cool water running into her burnt hand while she cried and fought me, screaming ‘no’ and trying to hide her hand from the water. It was very hard to hold her still without bruising her wrist or arm, and I found the best approach was to chase her hand with the hose and let the cool water run down her arm over it.

I hate having to do that, holding her down, no time to soothe her into complying, over riding her desperate attempts to protect herself. There’s a ball of pain and rage in me today that has nowhere to go.

Ambulance to the hospital for assessment and then home the same night. We were very lucky. She’d closed her hand so tightly the inside of it was barely burned and the outside was red and a bit swollen but nothing serious.

My nerves are shot. I want to cry, scream, shake, and throw up. I also want some quiet time to myself, maybe in a long bath, and about 6 hours more sleep.

I have nipple thrush again. Nursing feels like stabbing hot needles into my nipple. There was also a bit of a bacterial infection in one, it’s taking a long time to heal.

Some weeks are marathons, endurance tests. Can you get through them without discharging the stress in destructive ways? Eating everything/not eating/starting fights/self harm/insomnia/self medication… Whatever. The stress goes somewhere.

What helps reset when there are no reserve left to draw on, no spoons at the back of the cupboard?

Hand over the baby or walk away. Last night I was at the end of my tether with a worked up baby not sleeping at 1am. I dumped her on Rose’s lap with a movie and went to bed to sleep.

Connection and validation. We feel so alone in our dark hours. My future turns black and depression sets in. I feel trapped, doomed, and too miserable to even cry. I have to force myself to drag my focus away from my future and into now. What do I need right now? What do I need to do right now? Hang the washing. Eat something. Put out the fire.

Humour is an excellent remedy for self pity and taking life too seriously. A comedy or a mad friend are balm.

Sex or masturbation at the right moment can signal the end of crisis and a calming back to yourself or your relationship. Like a ship coming back to harbor or a bird to the nest.

Finding a way to scream. In my old life I would sometimes park somewhere undisturbed, wind up the windows, and scream. I’m crowded now and rarely have that chance. Finding a balance between discharging emotion without frightening the family – big feeling are normal. Write, draw, paint. Cry in the shower. Explain what’s going on and why, don’t make it a secret and don’t make them feel frightened or responsible for it. We feel the intensity of the horror ending whether it happened or not. Our bodies and minds react similarly to tragedy as they do to a near miss. Culturally we have less support for the time we need to process, but the feelings are the just the same. Denied, we will have to numb and discharge then in covert ways that often do harm. Set them a place at the table.

Yesterday I was calm, nurturing, pragmatic, and focused. Today I am rattled, angry, scared and despairing. It won’t last forever. This is not the future, not the new normal. Stay present in the moment. Listen to the pain. Be part of it.

My experience of self harm

Obviously this one is going to be totally unsuitable for some people. I talk about self harm frankly. I do not describe graphic accounts, but some methods are mentioned. There are no images. Please take care. 

I rea​d an article yesterday, called But Still, by Samantha Van Zveden. It reminded me of my own experiences, the fear, the ambivalence, the sense of compulsion, driving inexplicable need. It’s taken me most of my life, but it no longer has me by the throat. It’s an experience that bewilders people, and into the gap in our understandings pour myths, fears, and a kind of casual brutality that can still bring me screaming to my knees. 

They’re just doing it for attention. Doing it to be cool. Doing it for acceptance by other kids. Doing it to annoy her parents. Doing it because he doesn’t have enough to do. Doing it because it’s ‘in’. 

Falling far down the rabbit hole of trying to prove pain to people who do not believe you. Their belief, their compassion, their acceptance of your sincerity is an unwinnable thing. So many years and so much suffering poured out seeking it. Every day going down, deeper into self destruction, closer to death. I grew up in a world where pain was only real if someone else believed in it. Many people still live in that world. It took me a long time to escape it and reclaim my own mind.

Self harm is complex and full of contradictions. Something I often remind people is that it is common in the animal kingdom. Animals and birds experiencing inescapable pain – loneliness, captivity in an unsuitable cage: too small, too stressful, too close to predator species, overcrowded, or physically ill and suffering, many will head bang, pluck their own feathers, chew or lick off their skin, tear out nails and claws. On one level, self harm is a nearly universal response to certain kinds of suffering. This is the context, the broad picture. We are mammals, part of the world, nervous systems wired this way. 

Zooming right in, we get vast diversity in who, how, and why. Some find a single cause and many more a complex web of reasons, needs, struggles. 

Some harm to punish themselves. Some to break out of dissociation and stop feeling numb. Some to reclaim their own body. To mark important events, the way some cultures ritually scarify children becoming adults. To discharge suicidal distress and make it safely through the night. To trigger numbness when feelings are overwhelming. To push the boundaries of skin and self and rules of what is acceptable. To prove their pain to themselves or someone else who isn’t listening or doesn’t believe. To ease the screaming panic. To mark the empty days. To annihilate, piece by piece, every last bit of themselves. To get revenge on those who think they own us. To be ugly so we will not be desired and harmed. To make ourselves beautiful. To let out the badness. Because it simply, inexplicably, felt right. 

What it is not, and has never been, is the circle I hear so often. They self harm because they are mentally ill: we know they are mentally ill because they self harm. 

We self harm because something is wrong, because of pain, because it is the best way we’ve found to meet a need we don’t understand or accept or can’t express. 

I remember the first day I bought blades with the intention of self harming. I was suffering from severe PTSD and my world had become nightmares and panic and rage in a bed of grey, empty, exhausting apathy. I felt so utterly weak and damaged, all the time. Buying blades I felt powerful, defiant against all those who required that I show no sign of my suffering. That I should not be changed by my experiences. Breaking those rules felt like being true to myself. That link between owning my own pain and harming myself was powerful and took many years to understand and find an alternative for. Because for me, it clicked so strongly self harm immediately became an intense, consuming addiction. 

I experienced such relief from my anguish in self harm it was electric. Physical pain created an intense focus for my thoughts, it shifted me out of the mundane world into a deeply needed altered state and created a powerful sense of ownership over my body and proof of my pain to myself. It eased suicidal despair and sated my constant self loathing. For a short while the internal litany of how stupid, ugly, selfish, pathetic, and what a miserable freakish lonely failure I was would go quiet. It was peace. I felt strong instead of weak. I felt I’d proved something to myself. I felt like I could finally take off my armour and rest for a little while. 

The next morning I was drowning in shame, and the self loathing intensified beyond anything I’d previously experienced. The sight of the wounds would trigger rage at myself. Why was I so weak and pathetic? Such a drama queen. I sided with others brutal assessment of my character and motivation. 

Once the wounds healed and were less visible, I would feel panic. I needed to see them. I would desperately want new wounds. The longer I went without seeing my own blood, the more compelled I felt. I tried to meet this need in other ways, considering I have endometritis and adenomyosis and was bleeding heavily literally half of my life I couldn’t understand why that wasn’t enough blood, why it had to be this, too. 

So the experience, like all addictions, created the conditions to feed itself, becoming its own trigger and containing both the problem (shame, pain, self hate) and the remedy. Once inside the locked room I was trapped. The compulsion felt simultaneously too powerful to fight, and extremely minor, a mere suggestion that I was choosing to indulge. I could snap out of it anytime, stop anytime I wanted to. I felt divided.

When others reacted with intense anger, shaming, and minimising (you’re just copying someone else because you think it makes you interesting), I merely switched from my preferred methods of self harm to things that caused pain and distress but left no marks on my skin. They were a poor substitute for the rituals but not doing anything felt impossible. 

I read books and articles about it, talked to my doctor and shrinks. Nothing made the hunger go away. I tried ‘behavioural extinguishing’ where you simply refuse to engage the behaviour no matter what, and over time the urge will disappear. It did not. In 8 straight years of not harming at all I still struggled with the urge often. Some days it was louder and some quieter but always there. I often dreamed about it in terrifying ways, saw images of it unbidden in my mind when close to blades or while cooking, and when distressed or on seeing wounds or scars on others would intensely yearn for the release. 

I remember a friend confiding in me their teenage child had been self harming. I come home from the conversation to howl in bewildering agony – why do they get blades and not I? As if I was deprived of something essential to my survival. Part of my mind listening in, in absolute confusion and disgust. How could I be this messed up? 

I remember another friend confiding in me that they’d been to see a shrink and shared their awful compulsion to cut with them, and the shrink had brightly and inanely suggested wearing a rubber band on their wrist and flicking it when the urges come, to simulate the pain. It was like comparing a glass of water to a tsunami. I needed to scream so loud it tore my world apart, set the sky on fire, turned the rain to blood. I was drowning in unspeakable suffering, dying in plain sight, and the world of psychology offered a rubber band. My friend and I were mutually speechless at the gulf between our experiences and their understanding. The trivialising of the darkest hours of my life drove me further into darkness and further from understanding myself. What the hell is wrong with me?

I stayed away from medical care, aware that other’s responses fed the need on me, their callousness filled me with violent rage against myself, their compassion made me want to do it again to be treated with warmth and gentleness again. I listened to a young peer who turned up at ER one day, wild with pain and afraid she would self harm. They told her they would not admit her unless she had current wounds. So she walked out of the hospital and gave herself some, then walked back in. Then they admitted her. In that context, it was simply the admission fee for ‘care’. I noticed you often had to increase the dose over time to get a similar response from mental health staff. I called this ‘the language of symptoms’ and I fought not to speak it. With some peers, self harm was treated as the ultimate proof of your pain. It bypassed skepticism and got you into the club of people who had done it tough. I fought not to internalise this either. I read frightening books that made suicide seem the ultimate way to show other people you were genuinely hurting, and make them regret their indifference. I fought that framework too. 

I learned that for me, self harm was often about proving my pain, not only to other people in my world who were minimising my distress, but also to myself. It was a way of proving the suffering of the night before to whoever woke up the next morning. A kind of memo, written on my skin, that said: pay attention, we are hurting. Something that I could not ignore, could not find a positive light for or put a good spin on. Something animal and savage the intellectual part couldn’t explain away, something dark and forbidden the rule abiding part couldn’t condone or ignore. 

On bad days I spent hours in the bath, in self imposed quarenteen until I felt safe to walk past the knives in the kitchen. The longest bath like this I’ve taken was 9 hours. Letting out the cold water and adding more hot as my fingers and toes wrinkle. Waiting until the need reduces to manageable or the dissociation numbs it.

Substituting the need was my best approach. Less instant and complete, I learned to be patient with the alternatives and put up with partly met needs. It was by far the best relief I’d found. I developed Ink not Blood and discovered in a strange way that I was equally ashamed of simulated self harm as I was of actual wounds. The shame was more about the visibility of my pain than it was about the taboo of self harm. I felt deeply embarrassed I needed such a thing. Wrist poems continued to weave their way through my life as an alternative too. Talking to myself on my skin.

Psychosis resolved through body painting, full body art with simulated blood. Gold drips from my mouth, splashes of red across my hip. Simulated self harm and altered state on a massive scale with not a blade in sight. A wound in me heals, the need weakens. 

I read about the Bloggess, she discusses her self harm frankly, with neither pity not rage, simply that she ‘fell off the self harm wagon’. She dusts herself off and climbs back on. No one screams at her or takes her kids away. I can’t see anyone forcing her hands over to show mutilated wrists and dropping them with a lip curl of revulsion. I envy her. Self harm as a bad night, not a moral failing.

Then I’m pregnant and the proximity of children quietens the need. Star and Poppy arrive and it continues to fade away. The self hate stays, a near constant companion, the daily voice “I hate myself”. The nightmares of graphic self harm; dismemberment, self immolation, degloving, stop and don’t come back. The triggers lose their power, evoke a pang rather than a desperate thirst. I watch it drain out of my life with relief and confusion. I take less baths, wear less gloves and wrist cuffs, write fewer wrist poems. 

I still don’t entirely know why it’s gone, or if it’s ever coming back. Has it gone with some wild part of me I’m losing touch with? Is it a good thing that it’s eased? Has it been replaced by the depression, the sense of choking failure that haunts me? Health is not merely the absence of a symptom. Why didn’t it take the self loathing with it? What does it all mean? 

I don’t know. I’m glad not to be struggling with it, it was a many headed hydra that seemed to grow stronger the more heads I lopped off. Most days I’m glad my scars are so invisible. Some days I regret my restraint a little. I’m glad to have found that the symbol of harm, the imitation of it, has so much power for me, and learned that self harm is in itself a symbol of something else, a word in language you don’t yet speak but must learn to decipher. 

I don’t hurt like I used to hurt, stuffed full of secrets and bewildered by my pain. It’s in the open now and I have names for it (queer, trauma, multiple, altered state, creative). I’ve got other ways to scream and I don’t ignore myself so much. 

It’s such a victory, and yet, while the self hate remains it seems in many ways a hollow one. However far I go, it’s not enough. Have I won the war, or just stopped caring enough to bother fighting? Is it still a blessing if the screaming stops but the pain remains? I don’t know. I’m still working on it, feeling into it, trying to understand it. I’m glad to be out of the shame spiral, the snake vomiting its own tail. I’m glad my girls don’t live with it as a daily reality for their parent. I’m under no illusions though, I know exactly what it feels like to live with people who hate themselves and I try to be mindful of that, to decode it when I must and protect them as I can. 

I’ve come a long way. I’m not done yet. Self harm, for me, met a need. It also fuelled that need. Finding other powerful ways to meet it broke the spiral. (you don’t break addictions, you replace them) It’s nothing to do with the drug of choice, and everything to do with the environment. I had to make very hard, very painful choices to change my environment. In some ways much more painful than merely cutting myself. It was a substitute, a symbol, a signal of how trapped I felt in that life. 

I left. I severed relationships and found new ones. Came out as multiple, then again as bisexual, and again as genderqueer. Made art. Nurtured others. Found self compassion. Stopped trying to find my salvation in my own blood. Learned to live with the scars and the places where there aren’t scars. Go home and scream when people tell me self harm is attention seeking, but in the moment try to validate their bewilderment and anxiety, gently correct attention seeking to connection seeking. Try to bridge the gap and make the incomprehensible make some kind of sense, engender some kind of compassion. Try to make people rethink their instinctive revulsion, to question their belief self harm is always fundamentally wrong, that it deserves involuntary disgust of the kind usually reserved for rapists.

Our skin, like our bodies and our lives, is our own. It’s shame that kills us. Loneliness that destroys our lives. Love that saves us, that makes the pain bearable and heals the screaming wounds. It’s not always enough, but is always necessary for life. 

Beliefs that shape – and break – our mental health services

Our minds attach labels to things in the surrounding world, and we interpret those labels as discontinuities. If things have different labels, then we expect them to be a clear line of demarcation between them. The universe however, runs on processes rather than things, and a process starts as one thing and becomes another without ever crossing a clear boundary. Worse, if there’s some apparent boundary, we are likely to point to it and shout ‘that’s it’ just because we can’t see anything else worth getting agitated about… 

If we were less obsessed with labels and discontinuity, it would be much easier to recognise that the problem is not where to draw the line, it is that the image of drawing a line is inappropriate… 

Even such obvious distinctions as alive/dead or male/female turn out, on close examination, to be more like a continuous merging than a sharp discontinuity.”

From The Science of Discworld by Terry Pratchett p56.

How relevant for the convoluted mess that is our attempt to make sense of mental health. There is no clear line between healthy and sick, or even sane and insane, competent and incompetent, normal and abnormal, functioning and impaired. 

Why do we try to draw these lines?

We are seeking clarity about madness and pain. That’s not a bad thing. Our conceptual frameworks are primitive but the need for them is valid. 

We need to be able to identify incompetence when it puts others at risk. 

We also use labels as a way to limit access to resources. There’s a number of beliefs that come into play here, such as the ‘deserving poor‘, or the ‘genuinely mentally ill Vs the worried well‘. There’s a fear that any truly valuable resource will be consumed by the selfish who’s needs are lesser. I’ve encountered this belief many times. When the resource is money there’s sense to being concerned about exploitation and corruption! But when the resource is a bed in a suicide prevention clinic, or a support group for bereaved parents, you wonder how many who don’t need or deserve support are going to want to spent their time like this.

These beliefs are worth examining because the ideal of fair distribution of resources which is noble and appropriate, has a dark side which is gatekeepers and access difficulties. Whatever means are set up to ensure fair distribution are at risk for becoming the horrific hoops people have to jump through to get what they need. Unfairness, corruption, structural oppression, and inequality abound in such systems. 

Getting back to a practical example: where I live a new scheme came out a while ago where a doctor could help anyone who had a mental illness access a number of sessions with a psychologist every year. It was astonishingly popular. Despite all the concern about people not asking for help and the power of sigma preventing people from connecting with services, thousands of people went to their GP, asked for help, were diagnosed and put on a care plan and went to see a psychologist. The budget for the project blew out. 

We have a number of options at this point. The path chosen so far was to restrict the number of appointments each person could have every year. Restrict allocation of the resource. Everyone gets less. It’s been a bone of contention since, a glaring contradiction between public health announcements telling people to seek help, and massive feedback that 10 sessions of support a year is hugely inadequate for many people who are struggling. 

There are other ways to balance budgets for projects like this and we see these often in public health. Restricting access is a common one- erecting more filters to prevent people regarded to be at lower risk or need or more able to meet their support needs independently from accessing the resource. The NDIS operates in this way, meaning that a whole army of support workers are now administration workers whose job is to help vulnerable clients tick enough of the right boxes to qualify for assistance. 

Filters are valuable but they are also risky. They erect barriers to resources and are never elegant enough to ensure that the most vulnerable are not inadvertently screened out. As an example of that, consider the hundred of people we have living on our streets who do not have the basic financial support of welfare because the process of accessing it – proving their identity, having a fixed address of some kind for correspondence, and navigating the paperwork is beyond them or judged by them as too harmful to their mental health. 

Hand in hand with filters is often the use of expertise. We set up systems whereby those with professional expertise (ie competence) apply the filters, to ensure the right people are accessing the resources. This approach often creates valuable fail-safes. It helps to limit self serving behaviours by those who would benefit from creating dependence on resources and by those wanting to access more than their fair share. It can reduce waste where resources are squandered on a first come first served basis, rather than an allocation of need. It can also provide valuable guidance for those in need so they do not ricochet between different resources trying to find what is helpful.

The dark side of expertise is gatekeepers. People who have the power to deem you unsuitable and block your access. Again, systemic inequality is a huge risk, and the harder it is to become a gatekeeper, the more unlikely that gatekeepers themselves will have much in common with the most vulnerable members of society whom they are intended to facilitate access for. Across these gulfs – race, gender, culture, region, diagnosis, experience – we see that diversity is the stumbling block. A homogenous group of gatekeepers will prioritise access for those people they most identify with, empathise with, and understand. The minority, who are often the most vulnerable simply due to being in a minority, find that gatekeepers all too often erect access barriers and exclude rather than champion. As an example, trans young people locally can greatly struggle to access mental health services. The gatekeepers to these services (doctors, hospital registrars etc) frequently have an uninformed and prejudiced idea of what it is to be trans, and deny access based on these ideas. The very diversity that underlies the need is also the factor that makes access to resources such a challenge. 

In setting up systems of distribution of resources with the aim of fairness, we need to be wiser. First we should always explore and uphold the option of self referral wherever we can. What would happen if anyone could access a psychologist, to return to the initial project I mentioned. Would it truly be a financial disaster as hundreds of thousands of people self referred? How do we know this?

What about if we added to the budget for the psychologists all the money we are currently spending on the experts facilitating access? The thousands of GP appointments to assess mental health and set up care plans. 

What about if we also decided that we would spend less money telling people to ask for help and more money making sure help was there when people asked for it? Add a chunk of anti stigma campaign and educational campaign money to the pot too. Perhaps if the help was more accessible and more reliably helpful we’d find people would tell each other about it and save us the bother.

How is the budget looking now? How is the access looking? Is it choked by the less needy or full of the vulnerable? Are the resources going where they are really needed, generally speaking? Are we erring on the side of risking allocating to some who could do without, or risking some who need not being able to access? This a similar question to one we ask in the structure of our judicial system – given the imperfect nature of all systems, is it better for some innocent people to be punished, or some guilty people to go free? 

We don’t need to stop at self referral. But it’s such a powerful tool and so often overlooked. It’s the nature of governing bodies to want to govern, to assume that more regulation and restriction is what they are here to do and to reach for those tools over and over again in service of admirable values and goals such as fair distribution. But it is also the nature of systems to be flawed, and of all policy and law to have unintended consequences. Wisdom is in assuming flaws and exploring how to mitigate them, assuming there will always be bad unintended consequences and watching for them as they unfold. Trying to set up utopias on paper can be high risk for nightmare realities for those we intend to protect. Self referral is part of self regulation, a need and capacity of all species and all too often overlooked in policy and governance which starts with the assumption of incapacity and then tries to meet the need on individuals or communities behalf. On a personal level, self regulation is experienced as ‘freedom‘, one of the primary universal human needs, and often a key need obliterated by the current operating of our high needs mental health supports.

There are people exploring this idea in practice, for example suicide support services that allow self referral. Part of the difficulty with enacting policies like this is they outrage our sense of the way things should be done – our culture of experts and assessments is well embedded in mental health. They also reallocate many people within the system, making many gatekeeping roles redundant and moving our experts into roles of resources themselves or facilitators. It’s not always a comfortable change. 

Another way we can respond to our basic supply and demand problem with access to psychological services is to explore the demand in more detail. 

  • Why is there so much of it? Can we do anything to reduce the need? 
  • Is any part of the demand an unintended consequence of a policy or public health approach that we could change? For example, are our mental health public education campaigns accidentally making people feel inadequate to navigate life challenges themselves? Are our attempts to ensure fair distribution of welfare causing severe psychological distress? 
  • What is the demand actually for? What combination of needs are people accessing this resource to meet? Could some of them be adequately – or better – met by other resources or in other ways? Could the resources be delivered in a different way and still meet needs? Are the needs being adequately met by the resources or are the resources false satisfiers creating the illusion of meeting the need but actually only increasing it? 

So, for example, are many sessions being used up as people try to find a psychologist with whom they have a good fit, or conversely are people too afraid to waste the sessions and are staying with psychologists they are poor fit with and getting less out of the sessions? We could change the structure to address this if it’s an issue, for example better supporting networks to help people find psychologists with interests in the areas in which they are struggling, creating a different time and fee structure for first appointments, creating opportunities for people to see psychologists work, videos, or writing before choosing one, and so on. 

Would some people be happy in group settings? These are usually less expensive and have greater reach, they also add in access to peers. What kinds of models do people want? A group run by a facilitator is very different to a group designed to be clinical treatment, as is a peer based group. Online and face to face have differences also. 

Are some people primarily bringing community needs – such as loneliness, into psychology sessions where they cannot be met? What other formal resources can we create for these people?

We can celebrate the success of a service without having to erect access barriers. Creatively engaging the challenge of budgeting resources opens so many opportunities for diverse, meaningful community development. Exploring the beliefs we bring to service design and delivery can give us so much scope to see where good intentions founder and to be part of better systems. 

So often I’ve found that when unpacked, the ideas we have about the scarcity of resources come from a very limited perspective. The things that people need, the things that really matter, are not in short supply. Love, compassion, respect… These things are not used up or diminished by being shared. We do not need to be in competition over them. There are a thousand ways a community tells its members they are valued, and that’s as it should be, a thousand different ways people hear that best. So often the question people are really asking when they turn to our carefully guarded, expensive mental health resources are ones of worth. Does anyone care if I kill myself? Does my pain count? Am I worthy of compassion? Am I loved? It is very dangerous to ask questions like these of such a fallible and broken structure as the mental health system. 

When designing services and governing resources it’s worth keeping in mind that most of us will have moments when we will need to ask such questions of our community, whether we are made vulnerable through tragedy, illness, or our own mistakes. We all need a community that answers ‘yes, you have value’. If it is about drawing a line, we should all be on the inside of it, dignified and human. 

Pain

I’m just going to lie here and try to remember that I am an okay person and all the pain and darkness in the world is not my fault and does not need to live within my skin. I’m just going to lie here and feel the tension of public life like a child trying to decide whether to tell the adults about the bad things happening, wondering what it costs me to be honest or to keep secrets, in my heart I’m walking the ocean alone by the sea grass and the pelican bones and I’m so flooded with ghosts I’m choking on them.

I’m just going to lie here and try to follow instructions, recall my successes and my skills, feel them in my body in my breath, in the bones of me, really feel them. I’m just going to try and stop the avalanche of self hate and darkness and failure that’s killing me that’s making so much noise I can’t hear the sound of my own tears falling or the breaking of my heart.

I’m just going to lie here and breathe and remember that I’m not alone and that my darkness is not even mine, it is ours, that I’ve borrowed it from one neighbor and it will pass from me onto another, that it climbs in the chest of all people on one night or another and turns us in violent panic against ourselves.

As I lie here I can feel myself moving in and out of anguish like the tide or waves of darkness or sex or rape. Self hate changes to deep sadness, to a howl of anguish that is somehow cleaner and deeper a wound but cut so far into the heart of me I can’t bear it and go back to self hate and the drums of war in my flesh.

Some days all my dreams are broken ships or wounded satellites, falling. I find myself walking a strange world dressed with lies I can’t believe and people who cannot love or speak the truth. My hands shed despair like skin or shadows and I remember that this is part of what it is to be alive, the anguish in the night and the sad wild cry of gulls and the body broken. I withe on my rack because we do not do pain in public in our world, we do not howl at graves or beat our breasts at funerals, we do not cry at work or scream at school or cut ourselves on campus or we’ll be escorted off and banned and no one minds terribly if you kill yourself as long as you don’t do it on public property or let your kids find you. It’s a strange and broken world and I’m just going to lie here. I’m just going to lie here.

Holding spaces

Finding myself needing downtime, debriefing, and reflection space. So many conversations and experiences to digest. I recognise that lingering uneasy feeling of needing to stop taking in new experiences and find a safe place to slow everything down and unpack. 

I find myself thinking of the unpaid and often hidden and unrecognized work of the precious friends, mentors, and loved ones who hold a space like this. I’m seeing how to use such blessings more wisely and waste less time circling the same dilemmas. It’s a rare gift, space in which feelings don’t have to be rational or justified to be explored. I have worked hard to get better at doing it myself for myself and for others, to support people to feel genuinely safe, heard, and understood. 

I’m deeply grateful to Rose who has created this haven for me for years now, hours of conversations that at times seem pointless, confusing, frustrating. But that commitment to validation and reflection where I’ve been able to move out of personal journals and into relationship and conversation has been invaluable to me. Her love and skill and patience is a big part of why we work so well together. She is brilliant at listening, being safe for the vulnerable or traumatised, and remembering a my wildness and my darkness when I’m burned dry and can’t recall that I’m really a mad poet who has learned to mimic a regular person but I live, breathe, and recharge best out in the wilds, running along the edge of the night. 

I’m so blessed to have some friends who also hold spaces for me, online or face to face. Their timely connection has been the difference between lonely anguish and comfort, severe distress and pain I can howl out of my heart. I’m aware of how lucky I am.

I’m struck once again by how many aspects of therapy that are healing and helpful are also aspects of life and relationship. They don’t have to be walled away as trained skills available only in treatment, by those in regulated relationships. They can and often are part of the very best friendships, they are part of the love that passes between partners, parents, children. 

Eugene Gendlin recently passed away. I found his book on Focussing extremely interesting and helpful. I was intrigued that he didn’t take his ideas and lock them away in the exclusive domain of therapists, as is usual. Instead he considered focusing to be a skill any two people could learn and support each other in. Thousands of people have learned and offered this skill of holding space and listening to each other in support groups online and around the world. Precious, peer based. No power. No treatment. Connection. There’s nothing at all wrong with needing professional support. But I don’t like the locking of knowledge into silos, reserved for the experts and not recognised as the significant skill and profound kindness it is when we receive it in our personal lives.

Thankyou for the birthday wishes!

Thank you all kindly, I really appreciate it. I am wrestling with exhaustion and having a lot of down days lately, where my energy is low and it feels like the world is a dark and scary place. It was really wonderful to wake up on my birthday and feel excited that on that day, my world would be a flood of friendly messages. Things didn’t quite go to plan and got really stressful in the middle with dismantling furniture and all kind of shenanigans and my Facebook app not letting me see or respond to half of the messages, which was bothering me because I hate responding to some people and not others in case someone feels hurt, but I couldn’t get a spare minute to get onto my computer… And it all got messy in my brain and I went and hid. There’s been a lot going on lately and my anxiety is high.

Rose, being brilliant and knowing me well, has set up a gift every day for a week and arranged a lunch tomorrow with my family. ❤ So I’ve had little gifts and warm messages coming in every day; a box of chai lattes, a lovely new journal. This weekend she’s arranged a camping trip so we can use my new birthday tent! Close friends are keeping me company online at times which helps when nothing feels safe and I need to debrief some of the stressors. 

Today was the first day in long while I’ve been happy all day and it’s been wonderful. I had a good counseling appointment this morning which left me feeling hopeful and energised. I’ve enjoyed my family and my work, played board games, tacklef tricky things on my to do list, and felt excited about my life. Even a little bit loved and special. 🙂 How delightful!

So, thanks everyone who reached out. You’re awesome and I appreciate having you in my life, even on the days I’m struggling and can’t feel your goodwill or care of find any words to respond graciously. I fall into holes from time to time and I crawl out of them again. I’m glad you’re still here. x

I’m on YouTube: “Sarah K Reece on the enriched workplace”

So, I recently accepted the opportunity to speak on camera about mental health in the workplace for the SA Mental Health Commission. This is a big step for me! I’ve written before about the challenges of visibility for those of us who are multiple. I have moved from the written word, to public speaking, public blogging, radio, and now film. I am very proud of myself and very appreciative of the great people who worked with me on this project. Big shout-out to Tracey Hutt for awesome support during the filming, and the great film crew Mixed Mediums. 🙂 There was some back and forth discussion about whether it would be better for me to speak in person or on video about this. I’m very comfortable speaking in person for events, video is new territory for me. But I’m incredibly glad we went with the video – the event was today and I currently have laryngitis! Haha, fortuitous indeed!

Wounded healers

I enjoyed this article which I came across on Twitter tonight. Wounded healer a qualification without ceremony

I’m ‘out’ broadly about things that make me different and ways I struggle. I certainly don’t judge others who are not, nor do I even recommend one choice over the other because at times the costs have been very high for me. We all live to our own values and all values extract a cost which we must willingly choose to bear. Values only sound pretty and wishy washy if you haven’t tried to live to them. 

I do not believe any system of care for suffering people can be of real use until we genuinely understand that those employed in it are one of the most vulnerable high-risk groups. Until we make it safe for them to struggle, speak up, and need support we are doing harm. Some of our healers start out wounded, many more are wounded by trying to be healers in our destructive systems. In effect, we are wounding our healers and hoping that their silent suffering will somehow lead to the freedom and recovery of the identified patients. 

This cannot work. A system in which half the people can only be wounded and the other half can only be competent is broken by design. All humans are both. Inhuman systems do harm. Either everyone is safe to be human, or no one is safe. Everyone can heal from their wounds, or no one really can. 

Defining Mental Illness

One of the biggest challenges in working with the term ‘mental illness’ is how imprecise it is. Finding other terms and frames of reference is often important to me, because mental illness has so many problems. I’ve written before about my frustration with the way mental illnesses are conceptualised in a couple of posts:

  • I don’t believe in Mental Illness (or, rewriting the DSM) – a critique of the way the DSM groups symptom clusters using a medical paradigm. “Psychological illness, injury, and normal functioning become tangled. Defining abnormal becomes nearly impossible”
  • Mental Health needs better PR – exploring the ‘upsides’ of ‘mental illness’ and the way mental health can be presented as merely the absence of symptoms. “No more soaring mania, no more anguish, no more blood, no more voices. Mental health is silence, clipped wings, drugged stupor, numb blankness.”

Mental illness as an idea is rather like a huge drag net pulled by a fishing boat. It captures a lot more than it should, and it also misses some really important things that fall outside of the net. We use mental illness as a shorthand term for experiences and problems that are actually outside of the scope of the idea. One of these is suffering.

When we talk about preventing mental illness or reducing the incidence of it we are often talking about suffering. We want to reduce the horrific pain people are in, the suffering experienced by their friends and families who are struggling to understand and support them and find them help. The losses of relationships, careers, self esteem. But a great deal of the suffering that happens and needs addressing simply is not captured by the term ‘mental illness’ unless we stretch it so broadly that almost everyone qualifies as mentally ill. Grief is one example of this. The suffering caused by poverty and inequality which can present in ways that fit our categories of mental illnesses but also may not. Racism and discrimination which lock people out of opportunities, resources, connection, and self respect. Addictions. Abuse, bullying, domestic violence, rape culture. Loneliness, that subtle, pervasive, deadly experience buried beneath so many clinical terms for pain. Alienation, where those who are not invited to be part of the good life start setting fires to the lives of the fortunate. Destructive cultural ideas about happiness, optimism, the value of people, what it is to be ‘normal’, what success means, who the ‘nobodies’ are, what it means when bad things happen to us, and how we heal from pain and live meaningful lives. So much of this is critically important to discuss when we are talking about health of people and health of communities. There are threats, risks, and losses that go far outside the net of ‘mental illness’.

Mental illness also captures too much. Like a drag net that brings in fish as well as turtles, octopuses, and dolphins, there are valuable experiences and important aspects of what it is to be human that are currently tangled into the idea of mental illness. One of these is psychological injury where the mind is behaving exactly as it should under the circumstances. Nothing at all is wrong with the person, but they are distressed and need support. Needing support does not mean there is something wrong with you, this is how humans navigate loss, pain, and challenge. When you start to look at the symptoms of mental illnesses a question arises about whether we are describing the problem or instead capturing and focusing upon a healthy response to the problem. To put it another way, if a wound on my arm has clotted into a scab, my blood is doing its job. My blood is not the problem, the car crash I was just in is the problem. If I am suffering severe emotional pain in an abusive relationship, my mind is working the way it is supposed to and telling me that there is danger I should avoid, just the way it would if I put my hand on a hot stove. Feelings, even painful ones, serve important psychological purposes. The pain is meaningful and purposeful and represents a healthy mechanism, not a sick one. If we ‘cure’ people of emotional pain we make them psychological lepers. Leprosy does no harm  to the general body by itself, but those who cannot feel pain struggle to protect themselves from the risks of life and without extra care small injuries cause severe harm. Many of us have seen psychological lepers – people who are not in pain exactly but who seem stripped of some vitality and oddly incapable of caring for themselves. Psychological leprosy is also called institutionalisation.

Mental illness often also captures diversity and eccentricity. There is a natural diversity to the human experience that includes a variety of thresholds for experiences such as psychosis. Under some conditions such as sensory deprivation, everyone will hallucinate. As a community we have a variety of thresholds for these conditions, meaning some people will hallucinate more readily than others. Often this experience causes no harm and in our culture people who experience hallucinations that do not distress or impair them usually keep them secret. There is a massive gap in all our knowledge bases about normal diversity because most of what we know about experiences like this come from people who are too overwhelmed to hide them. Everyone else stays underground.

Idiosyncrasy, that is, the absolutely unique aspect of each of us is a deeply important aspect of living a meaningful life. However it is also in tension with being part of a community in which shared language, beliefs, and ways of doing things are important. We are highly social, as a species, and also highly individual. Creativity and idiosyncrasy have a relationship we are still exploring in research. ‘Normal’ and ‘healthy’ are often defined in such narrow community focused ways that individuality and uniqueness wind up conceptualised as mental illness. The example of a psychologist in a grey pant suit diagnosing a flamboyant black queer man with Histrionic Personality Disorder is a classic example of this. One of my psychology textbooks had a photo of beautiful black man in makeup and fishnets as the illustration of this mental illness. People who fit the conventional culture better often see authentic but less conventional people through the lens of mental illness.

Not only does this lens distort what is normal and healthy about us, it often reframes our greatest strength as a weakness to be overcome. For many of us, the pathway out of the anguish of mental illness is not about becoming more normal (fitting the social norms better) but about becoming more idiosyncratic and then more wisely fitting the social norms we need to. It’s about tuning in to ourselves and learning how strange we really are. What we really need. It’s the reason I don’t tell other people that they should heal their mental illness through art, even though that has been essential for me. One size does not fit all. Only individual approaches genuinely connect with people’s needs. But approaches cannot be individual and people cannot even tune in to what their real needs are when the focus is about restoring ‘abnormal’ thoughts, feelings, and behaviours to ‘normal’. It is a skill, or at least a capacity, to not fit in. To retain individuality in the presence of a strong collective. We are socialised to navigate our community and there is a tension between the I and the We. When things go wrong in any number of ways, that tension can eat us alive. The push to navigate the We aspect better, to fit in and be less strange, can destroy the process actually needed to ‘recover’, in which being different and connecting to how we actually work is skipped for platitudes about reducing stress and the bland roll out of top ten ways to be less crazy and in less pain (have you tried a cup of tea or snapping a rubber band against your wrist?).

All of these ideas also shape our sense of what mental health means. When we think mental health means ‘not suffering’ we limit it to a badge worn by the privileged who have experienced few of the challenges of life and are now satisfied to take credit for their ‘good mental health’ as if it was a personal attribute rather than good fortune. When we think it means being happy we pathologise the suffering and obliterate the dignity of enduring challenge and loss. Pain is part of a healthy, rich, deeply lived life. Lives with tragedy and less privilege are bound up in navigating pain in ways that are difficult for those who have not shared these experiences to comprehend. Trying to eradicate all pain or teach people to be pain averse can destroy rather than develop mental health. Conceptualising pain as unhealthy sets people at war with their hearts and minds. And yet there is also needless suffering, and pain that absolutely demands a response from a compassionate society. Shame, fear, loneliness, self hate, and self destruction are all real. Some suffering must be navigated and for that we need support and self compassion and an appreciation that mental health can actually look like sobbing face down on the bathroom floor because that is a healthy response to circumstances. Some suffering demands alleviation. No child should be raped. Nobody should be treated as scum by services designed to filter out only the ‘deserving poor’ for resources. Some of us are going to hallucinate sometimes. Maybe we play music on our guitar on those days, or maybe we wind up chasing the idea that making the things that make us different go away will make our lives better. A lot of that is down to how we label it.

A big day starting new projects

Rose, Poppy and I are all home from a big day out in very, very hot weather. We have turned on the air conditioner and collapsed on a mattress on the floor of the lounge room in our underwear, like a big pile of puppies. Rose is napping and Poppy is nursing and I’m checking Twitter and accepting new friend requests on Facebook. 

Not a lot could have persuaded us to venture out in 42C, but today was something special. Rose let me sleep in until 15 minutes before we had to leave because I am fighting a sinus infection and was feeling so rubbish I cried when the alarm went off an hour earlier. Today was the first meeting of the Community Advisory Committee put together by the brand new SA Mental Health Commission. We were both successful applicants which is very exciting, and brought Poppy along as it was an all day event and she still won’t take milk from cups or bottles. I was anxious about that but it went incredibly smoothly. She’s such a social little baby and the folks there are so friendly. She had a wonderful day cuddling everyone and singing. 

It was a special day. They’ve assembled an amazing group of people and I feel very honored to be included. My headspace was rough to begin with and I felt very small – boardroom type meetings are so very out of my culture still and my sense of failure is very attuned and intense at times. But I drew my distress (as I do) and my sense of dislocation calmed and as it eased I could see how I fit here and what I could bring to it.

“I’m here representing self loathing, insecurity, failure, bewilderment, inadequacy, poverty etc etc etc.

So here we are, helping hold a space to make something new! Other brilliant, vulnerable people with their own communities and experiences of failure and success. People who have heard of pluralism and open dialogue approaches to communication and diversity! Doubt and vulnerability are also valuable to bring to such spaces. I am very excited and hopeful.