My torchworked glass

I’ve spent a fantastic couple of days learning how to make torchworked glass beads with Karen, who owns Adelaide Beads. I have been waiting for so many years to learn hot glass techniques and I booked this class months ago. It was glorious! I adored it and I took to it so fast. Apparently I impressed as a natural. This was the very clever set up Karen used:

And these are some of my first ever beads. I learned so much and I am so excited to set up my own studio space and explore more. My passion is more sculpture than beads (although beads are perfect for building some of the skills needed) and I am keen to try larger creations. The cost of a glass kiln is prohibitive, however!

It was intense and tremendous fun, requiring focus and a steady hand. At one point today I accidentally failed to warm a piece of glass correctly and it shattered, flicking a tiny bit of melted glass into my shoe, where it burned a hole through my sock. Oops.

Molten glass is magic. Making the mixed colour beads or dragging a tool through layers of colour to make a marbled effect was so beautiful. The calm state of focused effort is such a balm to my busy mind. I can see the little sculptures I want to make, clearly in my mind’s eye and I’m itching to learn more. There’s not a lot available locally by way of teaching for what I want to know, so I’m back to trawling YouTube and forums on glasswork. But this was the most amazing start, and I’m on my way now. I’m hoping to create more tiny dioramas and scenes like my Broken City sculpture. Watch this space. 🙂

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.

 

Adventure gives life meaning

Poppy and I are having wonderful adventures together again. Every week we hang out together for a day, just us two, and do something fun. It’s brilliant. I’ve been working on my garden and backyard, bit by bit, clearing up weeds and junk and setting up more interesting play areas for her. Clearing away the mess of half done projects that were simply out of reach, and simplifying everything. This gorgeous photo is of her laughing in a paddle pool under the peach tree when planted when Tamlorn died. She brings so much joy and life into my world. I love her so much and I don’t want to miss out on her.

My grad cert in public health is in full swing and very interesting. I’m juggling it alongside a few gigs and projects on the side, which would probably drive most folks mad but feels so balanced to me it’s a breath of fresh air. My ideal week is a sample pack, a pick and mix of favourite things: Poppy adventures, a date with Rose, cooking, study, speaking/training, friends, time in the studio, writing, reading, and projects. Enough housework and admin that everything keeps ticking along and my schedules nest all these different activities in well. I was watching a great interview with a favourite artist, Del Kathryn Barton, recently. She spoke about how lucky she was to spend 5 days a week in her at studio and how few artists get to do that. I felt a chill and realised I would hate that. I’d feel so lonely and disconnected in my studio for that much of my life. It was a strange realisation at first – most artists crave more studio time. But it’s not my marker of success. Which is helpful to know before blindly pursuing it.

I’ve been reading a few interesting books lately and getting a lot out of them. One Small Step Can Change Your Life by Robert Maurer has been fascinating and invaluable over the past month. Like many folks with a trauma history I tend towards trying to make huge changes, innovative, life changing shifts in how I do things that serve to destabilise and overwhelm me. This book discusses the power of making changes so tiny our brain barely notices them and doesn’t feel threatened. It’s change by stealth, laying down new neural pathways subtly without shifting so fast we kick off a panicked flight/fight response. It’s working very well for me.

Another is I Could Do Anything, if I Only Knew What it Was by Barbara Sher. Last night I was reading in bed while Poppy slept next to me, weeping through a chapter about understanding why you need to be rescued to validate old childhood wounds. A powerfully fresh memory of being stranded and trapped in school suddenly overwhelmed me. I was not just unhappy, I was distraught. I was first suicidal at 10. I cannot express strongly enough the anguish of feeling so different, so alone, and so unvalued. A gifted, traumatised, creative, multiple, queer young person, an outsider everywhere.

I mentioned cautiously to friends recently that I have started talking with a psychologist who specialises in gifted people. I told them that I’ve been so careful not to discuss it most of my life because people are so threatened and uncomfortable with people who are gifted. My friend looked baffled and said she loves taking to smart people, why would I be worried and hide that? It’s finally occurred to me that I am trying to hide things about myself to appease the insecurity of people who never liked me anyway.

Unlike the other case studies Barbara mentioned, I blamed myself rather than others for my misery, loneliness, and humiliation. I was isolated and bullied because I was a freak who deserved it. In some ways I am still waiting to be rescued from school, to feel wanted and loved and deserving and important enough to care for. So my tangled career reflects this too, a fear of being trapped, ambivalence and confusion, a vague hope someone will ‘discover’ me and fix things for me. Not expressed with blazing narcissism, but a kind of confused helplessness. If I make it because of my own work, that need to be saved goes unmet. As of course, it must. No grand deliverance now could ever take the pain of those years away. But I can live differently with the scars.

Fascinating book. Since the first chapter a curious change has happened in my miserable inner voice ‘I hate myself’. I still have bad days where it loops, but most of the time if I remember, I can say ‘I don’t understand myself’. And it concurs, and leaves me in peace. A strange inner quiet to contemplate just what that means.

Life is a strange and wonderful adventure. That’s a good thing for a life like mine to be, because adventures give pain shape and meaning and context. It’s not called an adventure if everything is comfortable and all goes to plan. Threads of sorrow, anguish, and darkness all belong in adventures, they can be part of rich and deeply lived lives. I am untangling and learning and find myself feeling very alive lately. I step in and out of poetry, of Narnia, looking at the world sideways to see how it changes. To see what I want and where I could fit. Standing in the hallway of Torrens University, a new student, lost in all possible ways, and feeling the thrill of belonging, being part of something. Is it not the work of our lives to understand the deepest desires of our hearts and seek them? To grieve the dreams lost and turn fresh earth to grow new ones? We are strangers to ourselves until we can bear to look, and look again.

One of the questions in Barbara’s book, designed to help us better understand ourselves, was ‘If you could spend a day with anyone in the world, living or dead, who would it be?’ Names of brilliant artists starting flicking through one part of my mind. Quite unbidden an answer welled up from my deeps: Rose and Poppy.

Already here, and blazing so brightly in my life.

Ink Painting: We fall into the stars

A3 size. Ink on Arches paper.

A little while ago, Rose took Poppy and I camping, back to Rapid Bay. The place we used to go when dating. The place I went alone to mourn Tamlorn the Mother’s Day after the miscarriage. The place I fell off the planet into the void when running from the ‘real world’, but sent alone under the stars, in exile.

Together we watched the stars, a million million of them, brighter than I’ve ever seen. Satellite and stars falling and the milky way a mist across the sky. In the bay, dolphins swam with their young. Poppy asleep on my lap, my eyes wet with tears. I didn’t know if there would more nights like this for us. Somehow here we are, holding hands under the stars.

It is the work of our lives to find some way to stay alive, to still feel alive.

In Rose’s arms there, I felt so alive, it was like breathing stars that fluttered in my chest. We sat up in chairs opposite each other, held hands and looked up. It felt like the world tilted and we were looking down, into an ocean of lights. We held onto our chairs and each other and kept looking, hearts cracked open in wonder. All that starlight poured in. Love grows stronger under moonlight, feeds on poems.

We sit at the edge of the world and hold hands. Our child sleeps. The wind is warm and soft. We look up. We fall into stars. Love binds us to the world and each other. We do not fall.

Glitter tattoos are awesome

There’s nothing better in the world than spending a busy afternoon giving face painting and glitter tattoos to a happy crowd of young and the young-at-heart, followed by going home to a hot bath, chocolate, and a book. ❤️ Endometriosis be damned. I’ve becomepretty good at freehand glitter tattoos, at this event everyone wanted their names sparkly, including my namesake here. 😊 The weather is warming up and parties are in fine swing. It’s such an excellent side business for a visual artist with brush skills who loves kids. I’ve got rent for my studio, time with my family, and all is right with the world.

I’m back at uni!

I am very pleased to share some wonderfully good news. I have been accepted into a Graduate Certificate of Public Health by Torrens University! I have been on tenterhooks all week awaiting their decision. I’m starting immediately, in fact the course started 2 weeks ago so I’m slightly late to it, but tremendously excited. Here in Australia a grad cert is about the equivalent of an honours. Usually you need a bachelor’s degree to access it, but I got in on the strength of my resume (showing 7 years work history in the field, and my cert 4). I’ll be studying online for the first time, back at uni for the first time since Poppy was born, and I can’t wait to get started. My first subject is epidemiology. I’m going to have to brush up on APA formatting. Eeeeee!

I am hopeful this may help with my severe imposter syndrome, and give my work a little more credibility. I’m looking forward to learning new things and having access to interesting books and theories. It also opens the doors to a Master’s or PhD should I decide to pursue that road down the track. I’m also just incredibly excited that I finally have a resume that a faculty head described as impressive. ❤️ That’s been a real labor of love and I wasn’t sure that freelance work would be seen in the same light as a string of jobs, but there’s some pretty fantastic projects in there. I’m very proud of it.

In a funny twist of fate, I have also contacted my old art school where I had been part way through a bachelor’s degree that was defunded. They are now offering a new bachelor of visual arts that has exit points at diploma and advanced diploma levels. It’s looking likely that they will credit me for some of what I’ve already studied and if I complete a couple of extra classes in second semester next year, I could graduate with a diploma and have something to show for my work. So I’m going to investigate that further too.

The news couldn’t be more welcome, especially considering that today was otherwise horribly challenging with a number of unpleasant surprises such as my car radiator cracking and dumping coolant into the alternator. So, bring on the higher education! I’ll be studying online so I don’t need a car for that anyway. 😉 Rose and I will book our van in for a bit of extra love given all the traveling and camping we’ve been doing in her, and share that instead. Onward and upwards.

Family Joy

My wonderful sister was married on the weekend! Rose and I were bridesmaids and Poppy was a flower girl. It was very beautiful, very moving, and I cried through most of it! We were not as helpful in months prior as I’d have liked to be, Rose being in hospital was unfortunate timing. But we were able to help a bit with their gorgeous newborn baby so preparations could happen, and I helped make a bouquet and the fresh flowers and pails for the flower girls and boys to scatter.

Most of the petals were harvested from my garden that morning, keeping to the theme of purple with a little white, pink, and red, and everything chosen needed to be soft for any bare feet to step on.

My clever sister designed her brooch bouquet with gift brooches from family and friends. I wired it up and helped secure it all in place.

This was the bouquet part way through construction: a bit less glam at this stage! Don’t ask me to make another one, I swear I’ve got more grey hair!

Funny story, I was finishing the handle with some small nails the night before the wedding when Poppy grabbed a jar of nails off my desk, tipped it up to her mouth like a cup, then coughed and spluttered. When quested she told us she’d swallowed a nail so we all had to trek into emergency again. There, the nurse stripped her down and discovered she set off a metal detector over her chest and back, faintly! We were facing possible surgery and most of us not making it back to the wedding. But the x-rays came back completely clear, so after many unhappy hours of nil by mouth, we were able to take her home and continue as planned. Lucky!

There was a surprise naming ceremony for my tiny niece at the wedding too, and I was so honoured to become a godparent. ❤️ My sister is a truly lovely, brilliant, and kind person, one of my closest friends. To celebrate and part of such a joyful (exhausting) time in her life makes me very happy. I can’t wait for our kids to play together. And maybe sometime for Rose and I to celebrate our family too.

Still kisses with saliva

You know it’s a good weekend when you wake up on an airbed on the floor of your mates place.

Rose was back in the ER last night having brain scans to rule out scary possible causes for severe headaches and really high blood pressure. I wound up driving all over the countryside and took her back up to the party late in the evening then decided to stay put. Her scans were clear, thankfully. Something’s going on but it’s for the local doc to sort out.

Apart from the health scare it was a great day. I even made it to the studio, bought some new paints, and started a new art work. Had some folks switch out who haven’t been around in ages. Felt liberating.

Rose and I celebrated 6 years together this week. We went out for ice cream together and have another camping trip planned. It feels like we reached rock bottom recently and are coming out the other side. Falling back in love. Making a life again, not just surviving and holding on. After the long downwards slide, engines on fire and screaming, it’s exhilerating. Still here. We’ll make it work.

Posted this on Facebook: Happy 6 years together, darling. What an adventure! You are the most amazing person, so kind, devoted and loving. You have such depth and complexity, so many contradictions and unexpected qualities. You give me great courage! Your patient and enduring love make you the most attentive and wonderful parent. Your honesty and bravery inspire me. Your dreams for our future make my heart happy. The humble way you learn and change your mind and explore life keep you open to new horizons and possibilities. You are beautiful and strong. I’m proud to be with you. I love you.

Waking up to find it’s all not as bad as it seemed. Counting the cost and tallying the things we still have. It’s enough. There’s enough here for a good life. There’s good earth here to grow in. Good memories to build on.

The household is still sleeping. Poppy is pressed into my back, warm and soft. The sunlight after the night’s storm is chill and white. My bones are full of happy conversations around the fire with friends, and chiming softly. It’s damn cold. But yesterday we switched and stretched and remembered the real world isn’t the only one out there. Stepped sideways into other places. Supped, cracked bones, sucked marrow from life. Ink on fingers, poems slyly in mind like sleeping snakes. She kisses me and I can tell she means it. I sit under the tree in the backyard and the world turns over in its sleep, I slip past and out some other door where my chest is a seashell holding the roar of the ocean. We drive in the night, Bowie, NIN, VNV, Numan singing of darkness. Into the company of people and we are not afraid.

Reconnecting with my daughter

Poppy is two now! She is one of the greatest joys of my life. I never thought I would meet anyone else who loves swings as much as I do! We spend hours on this little swing in our back yard, or bigger swings at the park. ‘Higher, Mummy!’ She sings to herself on them, her own complicated versions of Twinkle Little Star or Indy Wincy Spider, concluded with giggling. Sometimes like yesterday, she stays on so long so rocks herself to sleep. Her little head droops and eyes close. I gently bring the swing to a stop and gather her into my arms, soothing the storm of tears about wanting to be back on the swing until she calms back to sleep.

Most mornings we share breakfast together in the back yard. Porridge, cereal with banana, eggy toast, and tea. Under the tree my heart expands, wakens more softly and looks at the day with a hopeful spark.

All my life I have so deeply wanted to be a parent. I am so grateful and so fortunate. She is glorious. And over the past month, I’ve learned to my surprise that I love and am well suited to being a stay at home parent. When both Star and Rose needed great care I quit work and felt like my life had ended. A sense of fatalism and despair. But I also felt something I didn’t expect. Joy, relief, new hope. As I match my days to Poppy’s needs and rhythms, a life emerges that is splendid. There’s peace, and fun, and connection. So I keep building on it. I find that my ideas about work are deeply poisoned. I am trying so hard to understand and recover from them. It is slow, painful, frustrating. Full of flashes of insight (work is my punishment for being on welfare) and such profound shame and self loathing I cannot understand anything or progress anywhere. I sit in front of my shrink sobbing until I want to throw up and there’s no understanding.

I’ve quit work. My work now includes peace and connection. There’s moments I simply sit and look at the sky. There’s tickling Poppy while she shrieks and tickles me back. There’s holding her as she falls asleep and feeling my heart expand and burst softly in my chest. A hundred invitations to be present in my life in a way I haven’t been.

Softly softly, the carer counselor tells me. We lose connection with ourselves and want to change everything, make it all right, now. Little changes for carers drained to the last drop. Choose what I want for lunch. Sit in my favourite place. Don’t always offer to do, eat, watch what the other person wants. Undo the impulse to destructive self sacrifice one tiny decision at a time, a few times a day. Tuning back in to my self and owning my own choices.

Rose and I realise that I’ve also stepped back from her pain in a way that’s blocked me from connection. She’s vulnerable, as the non gestational, non biological parent. Even more so with a terrible history of losses. I am sensitive to her fear, her desire for closeness to Poppy. When Rose is around Poppy, I fade into the background, unobtrusively. I cook or clean and care but I do not play or adventure or adore. I don’t step into the place that makes Rose sad or afraid. And in this way, for the best of reasons, I step out of my own life in a tiny thousand ways. My own relationship with Poppy. I become a caretaker instead of a parent. Rose has always seen this and been puzzled by it. She would try to cue me back in touch, help me notice when Poppy was trying to get my attention, encourage us to spend time together. I would read her buried anxiety and unthinkingly step back. Love as sacrifice. A vicarious life. My needs last. It’s hard to have a relationship with someone so out of touch with themselves they are barely in the room.

Rose emerged from her breakdown to find what she’d been hoping for has happened. Poppy and I sing to each other, snuggle, connect. She invites me back in, learns to celebrate alongside the little wince when I’m connected. I pay attention to my pull off course, the inclination to fade back and make small course corrections, a hug, eye contact, a few shared words. This child has two parents.

I am discovering the power of limits as well as nurturing. That a deeply loving yes must be bounded by the capacity for a deeply loving no. A willingness to let the other hurt in pursuit of their own growth. I adore Rose but should never have withdrawn from Poppy to make her more comfortable. Nor would she ever have asked that of me! There’s a kind of nurturing that is life giving and a kind that stifles, incapacitates, infantilises, wounds. I have mixed them up together and not been wise in my caring. Those I love and tend have grown both stronger and weaker in my care. I did not mean to harm but I have harmed. Stripped of agency, responsibility, the belief in a person’s capacity, they drown in their own vulnerability. If we never hurt we are unable to learn or choose. My love and caring has set people free and eased loneliness and suffering, but also created a kind of institutionalisation I did not foresee, and trapped me in a dungeon alongside them, also being tortured by their demons. Most carers know these places, these dilemmas. They are deep and difficult.

We are taking many steps a to a new life. Small errors are turned by time into routes way off course. The power of leadership, parenting, caring amplifies our weaknesses and impacts those we’re responsible to. Growth is a lifelong process, and sometimes tiny changes have huge impacts. Poppy takes me by the hand and asks ‘Swing, Mummy?’. We go swing.

The tide starts to turn

It’s been an incredible week here. Rose took me camping to my favourite place last night, by the sea under the stars. My heart is so full.

Poppy had hand foot and mouth this week, poor love. Today she was recovered and no longer contagious so she could go back to day care.

We couldn’t take her anywhere near other children and she was very bored and frustrated, so yesterday while recovering from the conference I took her to the beach for a picnic. It was an absolute joy. One of the silver linings of the terrible crisis in my family has been getting a chance to spend more time with her and connect in a way I’d started to lose. I was doing admin and housework and running around being responsible but missing out on snuggles, and being told about dinosaurs in a very serious voice, and the warm fuzzy wonderfulness of parenting her.

Things are easing. I’ve handed in the final draft of the prison magazine project I’ve been working on and the feedback has been stellar so far. I’m starting to cast a careful eye over the next possible projects with dawning excitement.

Rose is healing from the devastating breakdown, a little more present each day. More stars in our skies. We both step back from the edge, baby steps. She’s exploring study options and thinking of retraining in a new field. We are starting to dream about our future again.

And Georgie, Beyond Blue CEO, has tweeted this, which feels like it belongs on a book cover or something. It’s a beautiful summary, I’m happy to try and live up to that.

Disability and Employment

Some weeks ago, I was asked if it would be okay for Julia Gillard to quote me in a speech. I said yes, and she described me as ‘erudite and charismatic’ and quoted from my video with the SA Mental Health Commission about Mental health in the workplace, in this speech to the Diversity Council of Australia. Which is pretty awesome.

Julia is the Chair of the Board of Directors for Beyond Blue, and they were pretty keen on the message too. CEO Georgie Harman got in touch to share the video and invite me to speak on a panel at the Disability Employment Australia Conference #DEA2018. So today I trundled off to the Hilton to meet some new people.

There were some seriously awe inspiring folks there showing us what can be achieved with a disability. Which is inspiring and fantastic, if not intimidating. Conferences tend towards the shiny. So I did my thing and was vulnerable in public. I spoke about failure and shame. I told them I was possibly the least successful job hunter in the history of the world, and gave them a 5 minute run down on hundreds of job applications, rejections, sad experiences with DES providers, a microbusiness cert 3 for people with a disability where we were repeatedly told business is easy (spoiler alert, it’s not), NEIS, freelancing, jobs that evaporated after I applied, jobs that evaporated after I’d been successful at applying, training as a peer worker and still not being employed! It’s no bad thing to have someone speaking from failure. There’s so much you miss otherwise.

I was honest and passionate. It was hard. I thought TEDx was the most exposed I would ever feel in a talk but this was bizarre because it’s still something I’m wrestling with. It’s raw. Career has been my holy grail my whole life. I don’t come to a Disability Employment Service Provider for a job, I come for an identity! For a sense of purpose and meaning and connection. So I don’t have to be a bludger, a leaner, a long term unemployed, a hopeless case, a complex needs client, an underachiever, a dropout, a misfit, a failure anymore. I come because I don’t want to be poor for the rest of my life and I don’t want my children to be poor. I come because I’m so tired of pity and shame. I want to be a real person with a name tag and a business card and a place in the world.

So I talked about adversity and diversity and the complications of our lives where we don’t fit one box. Multiple intersections of difference and disadvantage, complex diagnosis, chronic pain, queer identity, homelessness.

We were asked how to motivate people to want to get help into work, and I said of course we want work – make it safer and make it more dignified. I talked about how essential work is but how risky too. Job hunting can put our financial safety nets at risk, can expose us to bullying and toxic workplace cultures, and can put more failure and rejection in front of us than our mental health can cope with. I also talked about how out of reach work can be during crisis, that often my personal definition of success is painfully simple – everyone I love is still alive at the end of the week.

I said that I’ve learned that I can’t successfully job search when I’m drowning in shame, terror, and rage. A bit like dating, I need to be okay with myself as I am. That means we all need to understand just because I don’t get paid, doesn’t mean I don’t work. People like me work a lot. We are often well suited to informal roles that fit around our disability. We run unpaid support groups on social media, we raise kids, volunteer at school, help out friends, care for family. We often create our lives in the gift economy, and transitioning to paid work is a very different culture. I shared how I’ve needed psychological support to help me see that having to make hard choices – like caring for a family member in crisis over finishing a degree, doesn’t mean I’ve failed.

I shared how many folks like me wind up freelancing so we can navigate our disability, and what a baptism of fire that is for many of us. I shared about the amazing Freelance Jungle and how essential that support has been to me. I talked about how changing my focus from what skills I want to use, over to what business model suits me best, fits around my limitations and causes the least stress has been far more helpful for me. Finding my own way of using skills that more closely mimics the informal work I do fits so much better than the rigid 9-5 model, or the huge, impossible to schedule projects that take years to finish and pay. It’s not about the skills, it’s about how the work is done and how well that fits. So I’ve moved away from project based work and back to gigs – short term, easy to schedule, and much less stressful for me. I mentioned that there’s a certain level of absurdity about funding an organisation to help me find work instead of just hiring me.

It was stressful, fun, exhilarating, exposing, and surreal. There were many interesting people to talk with, which I greatly enjoyed. My anxiety was pretty off the charts at times, but that’s the nature of that kind of personal work.

Georgie gave a fantastic talk about how we need to take care of our staff and our workforce too, to lead by example and prioritise mental health in the workplace. She was a strong advocate of the value and worth of people with lived experience. We both promoted the value of peer work in the disability employment context: that if you have never seen anyone do what you are trying to do, that is a very large gulf to bridge. People who share their experiences – the successes and failures – give us so much richness in figuring out our own paths.

So I hope I held a space for the human experience of disability and unemployment. There was a great deal of passion and sincerity from the people I spoke with. I was glad to be included.

 

Our week of birthdays

Star has her 18th birthday party tonight. Friends have generously opened their home to her friends. I’m currently resting on the couch while Poppy sleeps on me. I’ve made 36 small pizzas so far and I have another 12 to go. Star had severe tonsillitis earlier in the week but is looking much better and jittery/excited. She has cute balloons and a photobooth.

My family has a week of birthdays all in a row which is hectic to say the least. We are spacing the celebrations this year. Poppy’s was last weekend in a local park with hot soup, nature crafts, and umbrellas on standby. Rose will be in a couple of weeks in a cafe with delicious chocolate treats and boardgames.

I’m just so glad to be doing this. So glad Rose is still with us and able to be part of things. Happy Star is 18 and doing so well in her own recovery! She’s house hunting and excited about the next stage of her life. And Poppy is 2, fearless, loving, and funny. We are such a mess. And we are all okay. Such a beautiful, vulnerable collection of people I adore.

Our tribe have surrounded us with so much love. Some days I can’t feel it but no one seems to be taking that personally. Funnily enough it’s easier for me to feel the love around us when it’s directed towards someone else I love. A friend of a friend is making a cake for Star and I damn well cried when I heard about it. That we are trusted and loved and considered deserving of informal support when the formal family, health, and mental health supports have been so much less than excellent this past few months… To have not just our people care for us but have them draw on their own networks for us. To have people who are not in such pain welcome us into their lives in so many ways so we can rest in their peace for awhile… It’s healing. It gets us through the day, and that’s all I’m thinking about at the moment.

These birthdays are so worth celebrating because each of these people are so awesome in their own way and I’m grateful they are in my life. ❤️

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.

Difficulty settings and disability

I have thought often lately, about the idea that some people seem to do life on a harder difficulty setting than others. I have been fiercely contemplating how I might be able to lower the setting in my own life. So far I have decided I am going to

  • Replace the jungle of mismatched containers in my kitchen with a set of no more than 4 sizes that stack with matching lids
  • Dig out most of the front garden, replace the shrubs with low maintenance succulents, and mulch it
  • Quit project based work and replace it with a smaller amount of gig based work
  • Meal plan for lunch and dinners
  • Have cooking days and freeze portions
  • Schedule all the chores
  • Create a nest space in the home for anyone coping with overwhelm – bed, laptop for movies, books, headphones, toys, blankets, Lego, and air conditioner
  • Limit Poppy’s access to toys and games, change the system to adults access on her behalf so not too many things can be spread across the home at any one time
  • Initiate a toy/activity rotation system
  • Limit the number of clothes Poppy has in each size
  • There are a range of significant disabilities in my home. It’s time we catered better for this.

    In other news, Rose is still in an awfully rough way but being discharged into my care on Monday. I’ve been instructed to simply ‘stop being her carer’ by mental health staff. When I’ve suggested she stay nearby instead of coming home where I have my hands full and a young child who shouldn’t be exposed to intense distress, I’ve been told by these staff that Rose is too unwell to be discharged to live alone, but not unwell enough for any other care option, and if I won’t take her they’ll send her to a shelter. Meaning I’m expected to care for her while being instructed not to care for her. I continue to value accruing my ‘lived experience’ in this sector. 🙄😒😠 {sarcasm font}

    Star has come down with bacterial tonsillitis and is incredibly miserable. And now Poppy has come down sick. I’ve spent most of day cleaning, meal planning, shopping, organising for Poppy’s birthday this weekend, and trying to keep my head together.

    It would be really nice if someone could unjam the difficulty setting from ‘hellish’ and move it back in the direction of ‘stroll in the park’. In the meantime I’m tremendously glad for generous friends, wonderful family, beautiful art buying customers, wonderful clients, and having a keen sense of the absurd. Because when you find yourself cleaning poop off a small plastic turtle after the least successful attempt to clean the toddler in a bath ever, you’re either going to burn down the house or laugh.

    Still choosing to laugh.

    Peace in the night

    Home, at night. Poppy playing in her bath. I feel a whirring fan in my chest start to slow, ease off, fall silent. I can hear something other than the blood rushing in my in my ears, the screaming fear. There’s such peace here, in the quiet house at the end of the day. I move about, cleaning and sorting, ear finely tuned to the sound of play, coming past the bath every few moments to check on her. Behind the sounds of laughter and splashing is a silence that speaks to me like nothing else in my world.

    I am reminded of living alone for the first time at 23. So lonely and so afraid of solitude, when I would return to my caravan I would find not terror, but peace. The silence would sing to me, vibrate with a kind of resonance. Each time I returned I would find only relief that the nightmare was not real. Being alone was not more lonely, only more peaceful.

    Rose is out of the ED and back in the psych facility again. It seems these terrible bouts of vomiting and high blood pressure are part of her current breakdown. No physical cause could be found. It’s an intense stress response if that’s what it is.

    I remain deeply worried about her and about my capacity to care for her as well as Poppy. I have never cared for more than one person at a time before. Even in the worst of Star’s eating disorder treatment, I could leave Poppy with Rose knowing they were both safe and well nurtured. I often feel very afraid and overwhelmed by the task before me.

    I don’t know how we will get through this. But right now, everyone is safe. The house is at peace. My tasks are simple ones, food, cleaning, cuddles, play, sleep. Nothing has been broken past healing or ruined beyond reconciliation. We are not alone.

    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.

    Waiting for you

    Today tastes of spring. I find myself thinking often of my garden, aware it needs the winter prune to bring the roses back to size, and weeds have sprung up between the plants. I’m restless to reinvigorate it, it contains now the bones leftover by many different plans each toppled by the next. A old path still leads nowhere where potted trees used to rest. They’ve been taken out back now Zoe dog isn’t there to turn them into small sticks. Herbs have grown unruly and out of reach now shrubs are too large to pass between, or sheilded by the thorny remains of a miniature rose that burrowed under the entire length of the garden to throw up prickly arms without flowers at unexpected places. The most difficult patch, with heavy shade in winter and insufficient water in summer is bare where many species have been trialled but died. Only the arum lilies thrive there, today I can see the first leaves regenerating in the morning sun.

    Only my outer perimeter of roses, like a thorny moat, remains a valuable feature. A neighbour recently rampaged up and down the street, venting his spleen on everything vulnerable in reach. One neighbour had the harmless geraniums I’d planned for her torn out whole, the other her collection of trinkets and statutettes smashed on the drive way. To my ring of 6 foot high established roses he contented himself merely with tearing off some flower heads and scattering the blossoms.

    Nevertheless it lacks cohesion now, in colour, form, or theme, and my eye cannot find a comfortable whole anymore but jumps from aspect to aspect in a fragmented way. I look forward to revisioning and designing it anew. Perhaps a Mexican theme? Roses, succulents, and colourful statues?

    It’s been a hard, black week, but this morning is sweet. Birds are singing in the sunshine, my daughters are happy, and I’ve rested in bed all morning, rereading the wonderful Henghis Hapthorn series by Matthew Hughes. Between the bare patches and the weeds my white violets are in bloom. The last pomegranates hang on bare branches. Jonquils are small pops of colour and perfume among the tangle. Today the washing will dry on the line, the windows are all open to bring in the smell of a bright new day. The bees are in the rosemary.

    We are waiting for a baby, a new niece or nephew, to arrive. It’s a good day to be welcomed to the world. So much love awaits you, little one. Between all the sorrows and troubles of the world is also such beauty and tender joy.

    Ink Painting: The Aching Tides

    I made a little time this week for some of my own art, to ease a painful day. Star is having a tough week, and Rose and I went to a friend’s funeral too. There’s been a lot of big, sad conversations happening.

    This was made with a single colour ink, brushes, and a flex nib dip pen on Arches hot press 300gsm paper.

    It’s been very peaceful to be in the studio so much now my handmade book for prisoners is at that stage. Today Rose took both girls to the botanic garden with gumboots and umbrellas and I did some more sewing and painting at the studio. The physical pages are almost complete, next I will be back in my office for the digital work. My next projects are restlessly waiting for me, which is a good place to be.

    I am in love with a glass cube

    This delightful cube is my latest find. I have booked in to a visual art exhibition during the Feast Festival later this year. Feast is our SA Queer cultural festival and I’m very pleased to be involved. The cube is relevant because I’ll be exhibiting small sculptures as well as paintings this year. And everything I create will fit inside a cube like this beautiful, shiny example.

    Here it is in my studio for context:

    And this is what the whole display will look like in situ:

    A lovely horseshoe of glorious cubes! Clear glass, mirrors, lights, reflections… It is speaking to me and I’m delighted. Without that voice, the is no art worth making. It reminds me of my Broken City sculpture. I’m dreaming of wings and lights and shadows.

    I saw a GP today about my asthma and meds to make sure I was still on the right regime. He told me none of the antibiotics I’d been given were effective for a chest infection, which is why I’ve been so unwell these past two weeks. So that was a bit of a shock! Lots more rest proscribed.

    Meanwhile I’m deeply into my current project, hand painting a book. I spent today at my office scanning and editing the pages in Photoshop.

    Some alchemy has occurred and my stress is radically reducing. I feel calmer and more centered than I have in months. Time in my studio? Starting to recover? Working on a single project at a time? The meditative effect of painting for hours? Quitting most of my work over the past couple of months? Extra sleep and rest this week? I’m not sure. But I am clearer and less overwhelmed and that’s very welcome. I feel I’ve found my rhythm and I’m no longer feeling under terrible pressure or panic about project wrinkles that need ironing out as they occur. Whatever it is, it’s delightful. Another week or so of painting and editing and hopefully we’ll be sending a draft off for approval to all the organisations involved.

    Back into the Studio!

    I was well enough for a trip to the studio today! I’m still dealing with infection and asthma and on a stack of meds. I’ve never had an asthma episode this bad or this long before, it’s a bit scary. Going to the studio by myself – and driving again too, both felt strange and a bit worrying. I moved slowly, took precautions, and stayed in touch with Rose.

    But in the end it was wonderful. I bought more watercolour paper on the way, then spent the first couple of hours pottering. Sorting, tidying, cleaning. I went through the hundred or so pages of notes, tests, backup work, and proofs for my handmade magazine project Inside Voice, re read everything and sorted it into groups and two folders, one to put away, and the one containing everything I currently need. My mind is so much less cluttered now!

    Pottering is a delightful thing, it’s fun, it takes the pressure off, and as I do all those little jobs that get forgotten about when you’re busy and focused and under the pump, the space clears out, the lost tools get found again, the physical and mental clutter is calmed. All the papers are put together in a box, and labelled. I found several pairs of scissors and gave them a home, emptied two boxes of random things and cleared them off my floor, found all my notes and sketches for a handmade book that stalled and put them together in a folder, taped test strips into my journal and updated the index, started a new list of helpful things to bring to the studio, such as a small extension cord so I can sit at my desk and plug in my electric lap blanket on these cold nights. It’s slow, I rest often, I listen to music, and do whatever I feel like working on next.

    After a couple of hours of this, I feel settled. My anxiety has lowered, I feel at home and a sense of ownership and belonging has come over me. My breathing is raspy but not distressed.

    Then, I begin to paint and sew. The handmade book takes shape. Here is a sneak preview, neither the artwork not the poem are mine, they are both from prisoners (readers). I believe I have done them justice, so I’ve come home very happy. Hopefully I’ll keep getting better and get lots of studio time this week. ❤

    Zines and handmade books

    I think my new asthma meds are starting to work, it doesn’t hurt as much to breathe today. 🙂 Thought I would share a project with you I finished a little while ago, the zine (handmade magazine) made in my workshop by the members of a local queer youth Drop In.

    We had a really good time connecting over art supplies and exploring different things they wanted to say and different ways to express it. I first zine making workshops during the statewide consultation process I helped design and facilitate for the government last year, and of all the amazing submissions, it remains one of my favourites. Some of the entries brought people reading them to tears.

    Sometimes amazing art is about tremendous skill with the medium and materials. Sometimes it’s an obsession with capturing the light, with pigments or clay, with developing your craft age pushing your skills to the masterful.

    But sometimes it’s about the content. It make take 20 minutes with a biro and a folded piece of copy paper and still have the power to bring someone to tears. Zines can be great art in that way. Created in a few hours like this workshop, there’s simply no time for fretting about getting your prose perfect or how awful your drawing skills are, and it doesn’t really matter. It’s raw, imperfect, authentic. It captures something often lost in more considered, polished works of art. It’s a kind of consultation process in itself – what matters to you? What’s in your mind? It’s an ink blot analysis. When I give you this marker, what wants to come out of you? The speed at which these are made forces us past the anxieties that great art brings, instead of waiting for perfect words and images we speak, uncertainly, now. And we cross out, paint over, play with, interact with, what we’ve spoken. Zines are special that way.

    Handmade books are, for me, taking the zine into another space. Where the zine is cheaply reproduced, rough, raw, punk, DIY, uninhibited, the hand made book is more considered. It’s the zine, polished. My handmade books are text and image, the place where my passion for both combines. They are days spent painting or embroidering a single page.

    They are rough drafts laid out and arranged and rearranged to find balance.

    This is the layout of my current one, all artwork, poems, and articles contributed by prisoners and organisations who care about their health and welfare. It’s the prototype so so much has been learned along the way. I’ve been kept busy figuring out copyright, front matter, submission guidelines, editing long articles to fit the space, choosing commercial fonts that are highly readable for those with low literacy levels or vision impairment. It’s a labour of love, showing off every submission to its best.

    I always ask to keep a zine from every workshop, my collection is now wonderful and I bring some of it along to new workshops to inspire. I am very much looking forward to sharing the next zines and artbooks with you.

    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. ❤

    Painting in bed

    All last week I was awake half the night with Poppy who was very unhappy with a throat infection. Pratchett, who died 3 years ago, has been keeping me company through an ebook on my phone. There’s an astonishing kind of magic there, that he can have been dead for years and still be present in a way that’s warm, human, and real to me. I fall in love with books all over again.

    Poppy is recovered now, full of life and somehow extra words and communication now she’s feeling better. She sleeps with her hand touching my back or her feet resting on my leg. I am often surprised at my own wordlessness with her. My world revolves around her like a hatchling in a nest, and we venture through day and night together, yet there’s few poems since Tam. Still stoppered.

    It feels like I haven’t met her yet. I don’t know who she will be or what worlds she will walk. Sometimes I live so much in her future I forget she is here now. I remind myself to wake up and look and she delights me with a grin and a kiss. She will never be this age again, never again be who she is right now. She’s astonishing.

    Rose has been sleeping upright in an armchair to help manage pain from her ear infections. I find myself awake in the small hours, trawling Facebook, unsatisfied, lost. I’ve read all the books I can afford to buy and I can’t stop looking for something, and can’t name what it is. At last I realise simply that I’m lonely. I message Rose, she’s awake too. She comes to bed for a little while and I snuggle into her warmth. For the first time in a long time I unpeel my spikey armor and bring my soft vulnerability to her instead of sharp, prickly fear. We rest in the dark, wordless, holding hands. Thinking not of the past or the future but simply present in the night, velvet soft and beautiful with the child sleeping next to us.

    I’m on day 8 of being sick myself, virus gone bacterial and dropped into my chest. I woke earlier this week to discover that a friend of mine, Amber, had died suddenly. She who survived so much suddenly taken from us. I spent the day crying in bed. I’ve spent the week in bed. I hope I’ll be well enough to attend her funeral.

    So much illness brings its own fears. Am I annoying my friends? Have I missed some underlying cause? I find myself picking at the threads of my life, trying to work it out. Why am I hurting? Where have I gone wrong? I’m so depleted – how do I recover? What do I need? The picking brings no answers, it unravels certainty, brings doubt to every choice I’ve made. The only thing worse than being sick is also being afraid everyone else is bored and out of compassion, and that maybe you’ve accidentally brought it on yourself. After a while, with an effort, I stop picking and remember that in the middle of the illness is the worst time to ask such questions. I’ve no brain for it. Rest, fluids, kindness. I go back to bed and buy myself another book to read. Help Rose manage the new and unpleasant ear medicine in the hope of keeping her out of hospital.

    Today the infection is worse but paradoxically I feel better. Good news is bouying me. I have new support and new projects on the horizon. I’m planning an art exhibition for later this year, I have a mentor lined up for my guide to multiplicity, and I’ve been selling art this week. I’ve borrowed a laptop while I need to be at home which has helped so much. Today I’m starting the painting for my handmade book for prisoners project, in bed.

    Chronic illness and caring complicate my work and career goals, but I’m finally adapting and finding paths through. Letting go of the things I can’t have right now, like the time to create a solid primary income. Instead figuring out what works around my needs and my family, how to have the resources to be on call for them and trickle in enough paid work to keep up with my studio rent and my shrink fees. (Thinking of Frida, painting from bed in her body brace) There’s a kind of power in being able to do this, to still engage, to contribute, to feel connected and chase my dreams even from bed. I’m about to close down some aspects of my business and open new ones up that better fit my situation and my skills. Figuring out a model that works for me has been a major focus for the past year, and it’s finally emerging, as is the support I need to make it happen. I’m excited to launch it soon.

    So here’s to life, my loves! It’s complicated at times. Full of grief, loss, sickness, plans gone astray. But also incredibly beautiful. I’m still a part of the world, part of the community mourning Amber, part of a team who cares about prisoners, part of a tribe who turn up with lunch and cry about heartbreaking things and laugh over a board game. I am here, in the heart of it, anchored by love.

    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.