Join our IDAHOBIT webinar

Sunday May 17 is the International Day Against Homophobia, Biphobia, Intersexphobia and Transphobia. The fabulous folks at the South Australian Rainbow Advocacy Alliance Inc and the SA Dept of Human Services are hosting a FREE webinar online and I’ll be on the panel along with Neda Madhoc and Zac Cannell discussing the theme for 2020 – Breaking the Silence.

Sunday May 17
3-4pm ACST
FREE
Tickets here
Everyone, including allies, is welcome

Image may contain: 3 people
Image description: Poster advertising IDAHOBIT 2020 Online Community Webinar. It has a bright rainbow background with silhouettes of people dancing/celebrating. A large box frames photos of the three panelists, and a big heading asks “How do we break the silence for diverse parts of the LGBTIQ+ community?”

Auslan interpreters will be present throughout the event. You can find it on Facebook here. Or jump straight to the free tickets on eventbrite. Hope to see you there, folks.

The world as it is

Talking with people who speak my language. Shared experiences, peers. The night full of rain like stars falling. Meeting again after long absence the clients I’ve not been able to see since covid hit. Taking a break in the middle of my day to walk around the block with Poppy. We collected pretty leaves. She rode her bike through the largest puddle. I was instructed very seriously on how to carry her gumboots full of puddle water home. I accepted my instructions.

The afternoon light dappled through the trees and laying on the footpath and storm water like white gold. The sound of the leaves making music together in the wind.

Jay is alive. Alone, almost silent, lost far from me in a shadowed place. Avery likewise sending small messages from a world consumed by pain. We have not lost hope. We watch, and listen. Gather patience, tune our ears better. Find warmth to ease the rattle of our chilled and anxious bones. Hold our hearts tight in burnout and loss. The light falling white gold through the trees. The world waiting.

Somewhere as far away as yesterday my phone buzzes like a sick insect. “The thing you have to understand…” says a man’s voice, many men’s voices, overlapping, talking to my empty study late at night, blending like a hundred radio channels left on, all talking and never hearing. The thing you have to understand they say to my empty room. A room away, I read next to my child, sleep next to her, dream alongside her. I have to understand nothing. They buzz into eventual silence.

Everything is wrong. No one and nowhere is safe. Safety is a dream we’re dying for. My throat closes on the phone to them, the words stick. Articulateness is in the ear of the listener, an artifact of relationship, not a fixed quality of a person. The words stick, freeze, cling to my throat like mud.

I can’t explain myself, he says. I’m not good at communicating, she tells me. Her words say yes, but her body says no. 8 years in I’m finally learning to listen to her body. When I get overwhelmed I just agree with anything, he tells me. I’ve heard the same story a million times over, felt my own capitulation in the face of professional gaslighting, group hysteria. Just because I can spell it doesn’t mean I can stop it.

I’m lying naked in the bath, far beyond shame, while my best friend calls hospitals and we try to calculate the value of a person’s life.

I’m watching, who steps in, who panics, freezes, or steps back. I know who my friends are. I know who is sitting by me in that bath, in their own baths, remembering what it is to be naked in the face of injustice, wordless in the face of impatient unsafety.

The rain falls on my bald head when I take out the bins and I can’t help but laugh. The world is so intimate, bright- dark, full of dew. Life and death, words and silence, the mud on my feet and in my throat. Shared and fractured, kept safe, and lost far beyond memory. It is what it is.

Finding my way home

My work life, like that of most NDIS support coordinators, has become a kind of dark vortex that sucks me in. Death and risk and burnout, apathy, inadequate systems, and hopelessly slow processes makes progress slow. It’s like having my foot to the floor on both the accelerator and the brake. Or trying to put out a house fire with teaspoons of water.

But not all my world is work, and I’m lucky enough that Rose has been holding down the family fort for me. When I wrote that I worked for 48 hours without a break, that was only possible because Rose looked after Poppy and our lives for 48 hours without a break. There is so often other forms of less paid, or unpaid, and unrecognised work that props people in paid work up. Rose has been a champion and like me, she’s tired. So I’m pulling back, setting limits, spending more time with my family as best I can. The front lines are no place for a family. But I’m lucky to have them.

Image description: Poppy riding her bike through a big puddle. The puddle is full of bright autumn leaves. She’s riding a green and timber bike. Her cardigan is blue and her gumboots are rainbow.

It’s special to slow down enough to remember they are relationships I cherish, not obligations I’m failing. Sometimes I’m a menace to my own goals and values.

Image description: a basin of plaster paints in bright rainbow colors. Poppy is scraping some green paint onto a plastic palette knife.

Poppy I often do messy play on our days together. Rose finds messy things stressful so it’s a Mummy- and-kiddo activity. On this day we played with paint mixed with plaster of Paris. It goes solid once dry, and has a lovely thick texture perfect for palette knives while wet.

Image description: plaster painting of a plant with long green leaves and pinkish flowers, but Sarah K Reece

Life is not all dark, even in the vortex. So many bright lights remain. They keep my heart strong, my bed warm. The guide me home.

Alone but Alive

Still alive – the best news I wake every morning.

Still alone in the house.

Well, not Alone alone. No support workers. Butter* remains faithful and devoted. The neighbour who originally found them is still dropping in to check on them. The cats sleep on them.

This was their blog post recently:

Keep Going, by Jay

I’m tired. Depression comes and goes in waves. Right now I’m lying in bed, on warm fluffy sheets, under a weighted blanket, with one of my best friend’s puppies. I really really get self care.

Every day I check Jay is alive, boil my kettle, prepare breakfast and morning tea and start work.

Image description: busy study space with many notes in neat stacks on a desk, 2 computer screens, a split keyboard, and a rainbow got water bottle on a chair.


I resource myself in every possible way to give me strength. Friends hold the space with me. It’s a sprint, and then a marathon. I borrow friend’s dogs and sensory aids, call people over who sleep in the home with me when I can’t speak or move my arms anymore. I have vast, beautiful, devoted networks I’ve spent years building and learning how to let love me. They – you – send love, money, good wishes, funny videos, clever suggestions, strength, compassion, sadness, horror. I bear witness and you bear witness with me. It’s a small miracle that we can bear it, this one more atrocity in a sea of atrocities.

I think it’s partly because it’s more than a sad story. Jay isn’t just a victim and I some Erin Brockovitch hero. I’m dealing with disability and stigma myself. Jay sometimes comforts me, shows me their vast strength and patience. We are more than the roles given to us, and less.

Everyone keeps advising me on self care as if it will erase the distress, the sacrifices of crisis work and witness bearing. I found it curious that we love a marathon in sports, or endurance for the sake of testing the limits of the human body against some vast feat: a mountain or ocean or flight to the moon. We understand sacrifices in those contexts, for those worthy goals. But in community services? I’m viewed with alarm and suspicion. My weariness and emotions count against my credibility. We understand adult nappies to train for space but are confused and concerned by me sitting at my computer for so long I’ve got sores on my butt and I can’t move my hands.

What a strange world that mountains are worth conquering and stars reaching for and races are for winning, but for humans, for our own precious people we preach instead a balanced life. I have lost count of how many times I’ve been advised to abandon Jay to the public health, or death, or both. As is always the case with secret tragedy I’ve been hearing stories of devastation and lots from others who have been here. Their takes of death and abandonment, broken heartenedness and reaching the end of all their efforts to find only failure and loss.

We talk about burnout instead of community, and sustainability instead of resources. Jay could have died the other day for the simple lack of a urine test and antibiotics. It took a super human effort to provide them. I don’t regret it. Even if it’s not enough in the long run, I don’t regret it. Not any of it. And I won’t look away.

How to Stand with Jay

It’s my Birthday and other Wonderful News

I’ve had the most wonderful birthday I’ve had since I was 8.

Wow. I LOVED my birthday as a little kid. There was chocolate, friends, adventures, gifts, and cake. My parents created the most wonderful parties imaginable! Games, handmade Woman’s Weekly style decorated cakes, bonfires, crafts, it was frankly the most wonderful day of the year for me. As I got older and my friendships collapsed, my birthday parties remained so coveted that even kids who actively disliked me would turn up and be nice to me for the day.

Fast forward to my teens and the memorable 16th where only 2 kids attended and neither of them knew me, and you have the foundation of the next 20 years where I’ve been a suicidal depressed mess this time of year, often for weeks or even months.

Not today. Today, in the middle of a damn pandemic, owing thousands of dollars to my staff, and having suffered the most intense and exhausting few weeks trying to keep Jay alive… today I’m happy.

I’m Autistic!

I have a diagnosis of Autism largely to thank for that. It’s been life changing good news, opening my world up to patterns and knowledge and workarounds for so much confusing suffering and incapacities. I’ll unpack that more another time, and I know a lot of folks will find it confusing that I’m celebrating this news instead of sad. But for all the folks who get it, especially the sheer liberation of a late diagnosis after years in the dark… WHOOOOO HOOOO it finally makes sense! I’ve spent 4 weeks discovering the sheer peace and joy of weighted blankets, noise cancelling headphones, extremely hot baths, avoiding fridge cold foods, and not having to have hair. 1,000 times a day I make discoveries and undo years of conditioning and fear to find who we are and what we need to function.

Image description, headshot of Sarah smiling straight at the camera with dark green trees behind. They have a shaved head and are wearing bright purple lipstick covered in silver holographic glitter and look happy.

Including how to make birthdays wonderful – such as not having to be scared of all the thoughtful gifts because I know I go blank and don’t communicate appreciation, but no matter how hard I try I have not been able to change that! All that self knowledge buried by socialisation and fear of screwing up my friendships is now unlocking and I’m full of fierce joy.

If you want to give me something this year for my birthday – share my Stand with Jay campaign, or give me an etsy giftcard, or tell me something I’ve said or done or created that has made a difference to you. You don’t have to do any of those, I’m just happy to have you in my life.

Rose has her own house!

In the middle of a pandemic is a difficult time to be allocated a public housing unit, but what can you do? She now lives a few minutes away in a beautiful little place and the breathing room for so many different trauma and sensory and work needs has taken the stress off us and left us giddy in love. In fact…

We’re getting married!

A quarantine wedding! Perfect for the mad social creature that I am who can’t bear for anyone to be left out, and the sweet introvert that is Rose who feels uncomfortable in any group larger than 8. We’re working through the details now and hoping for June. ❤

The small issue of my work life currently not only not paying, but plunging me into the largest debt of my life temporarily put a dampener on the plans for my wages… but we’ve found a wonderful option for a low cost quarantine wedding that looks like it suits us perfectly and should be able to do the entire thing for $3,000, or if we really have to cut the budget, down to $400. (no photos, pretty clothes, etc, so I hope not)

I’m in horrible debt

I owe over $10,000 in wages (still calculating the overtime), plus the tax, super, work cover, insurance, meals, and other business costs such as mental health supervision, HR, my office manager (no one in their right mind wants me calculating the payroll with my math disability). NDIS weren’t going to pay us, then were, then decided not to again. It’s a huge mess and some pretty serious allegations are flying around about me… however all my choices and actions have been documented and I’m an open book and welcome the coming investigations, in fact I’ve done my best to initiate every investigation possible!

So I’m looking into loans to pay my staff, pay back loans from friends who offered money to cover us during the small exciting window when NDIS assured us they would pay us, and pay myself at least enough to buy a more comfortable office chair and get married. I’m sure things will come out clean in the wash but we’ve all got to eat in the mean time and frankly start paying rent again.

Jay is still alive

Between the bloody public health system, NDIS, and the pandemic, all the staff who were supporting Jay have been stood down – there’s no pay and no insurance. Jay is stuck in bed in the house and it’s horrible, but we’re with them online and the neighbour who found them in the first place is helping. Tomorrow we start again trying to get actual decent care set up. But having them alive and being able to take a day off has been a pretty fantastic birthday present. 🙂

Image description: Sarah standing in front of a garden, with bare feet, a short black tunic with Star Wars on the chest, teal shorts and jacket, shaved hair, smiling at the camera

Please #standwithjay

“We will both die here.” The Neurodiversity Community Has Lost One of Its Most Beloved Advocates.

Source: “We will both die here.” The Neurodiversity Community Has Lost One of Its Most Beloved Advocates.

 

Jay is still alone, afraid, overwhelmed. We are trying to create precarious safety after too many broken promises, too many failed plans.

Too many dead and dying disabled and divergent people.

Are we dying of covid? Or restricted access? Abelism? Discrimination?

Rejection?

Broken hearts?

Weariness.

Some days we fight with everything we have

Some days we lie back, numb, broken. Surrender to the pain and the exhaustion. Let the planet turn and the stars wheel overhead. Weep for our friends, for friends we haven’t even known. For people like us. Let go.

And tomorrow

Who knows what comes with dawn?

We wait

Watch

Witness

Love.

 

How to Stand with Jay

 

Magnolia Speaks

Jay is still alive today. Alone in the house and crying. We are all trying to comfort them online. But alone.

Magnolia* is Jay’s overseas partner. They have gone through hell and back watching this from far away, working on documents to send to doctors about what has happened and what is needed, talking to the staff about how to manage the food and caring and what plurality means and reminding people about pronouns and trying to keep Jay safe.

Magnolia offered to write something we could share and yesterday their words were hopeful. Then last night we were forced to abandon Jay in their home once again and the bitterness and fear is horrible. Here’s what they want to share:

Magnolia Speaks: 15/4/2020

I’ve been writing it over and over again in my head, trying to find a way to tell you what this is like. Trying to find a way to say this is hell but those words are so overused I don’t think you’ll understand.

The last post I wrote was hopeful, but it’s hard right now to find the hope. I didn’t know what we had could unravel so quickly, but here we are. Once again I am watching, an ocean away, while my love is left alone, no help, pain mounting and sickness spiraling out of control. We all keep going onto the discord channel, family giving comfort, workers giving their free unpaid time to gently ask them, can you drink, did you take your meds, are you okay?

It’s a stupid question ‘are you okay?’ but we keep asking it. If okay means safe and stable, they’re not okay. But every time they answer there’s the one little glimmer of hope: not dead yet. Not dead yet. Still here. Still here.
“I’ll find a way to stay alive,” they promised us. I’ve watched them stay alive against all odds for a long time, and I believe in them more than I believe in most anyone. But they can’t go on forever with nothing. Even Jay acknowledges that.

Despite despair, despite the mounting challenges, Jay’s family is still here and we’re not going anywhere. This team is still here, and they’re all fighting for the same thing — to hear Jay’s voice and give them power in a world that wants to take everything from them. When hope is too weak to hold us up, we will move forward with the power of anger, the pure fire of our determination.

Please, if you’re reading this, please don’t give up. Keep fighting with us. Let’s make a fuss too big for the broken governmental systems to ignore, too big for the hospitals to wash away with a PR campaign, too loud to be drowned out by bureaucracy and polite dismissals.

Jay will keep fighting to stay alive,
and us?
We’re fighting to make something
worth staying alive for.

Magnolia
a digital artwork showing a white dog sleeping at the feet of a person in a wheelchair. The person is brightly rainbow coloured with punk mohawk hair and glasses. They are painting a landscape artwork on an easel.
Original artwork by Jay. Image description a digital artwork showing a white dog sleeping at the feet of a person in a wheelchair. The person is brightly rainbow coloured with punk mohawk hair and glasses. They are painting a landscape artwork on an easel.

How to Stand with Jay

If you’re still reading, this is the one they wrote yesterday, when we had a plan and things looked hopeful again. We ride the waves of hope and despair, nothing stays static for long for Jay.

Magnolia Speaks: 14/4/2020

This last week, almost every time I woke up it was to my phone ringing. Check your messages. Please come help. What do I do, I don’t know what to do, what do I do? I can’t take this any more.

I’m not a professional. I’m just a disabled parent scrabbling to prevent yet another bout of homelessness. I have no medical training or background in care giving. And yet, somehow, I am one of the precious pins that is holding the fragile structure of Jay’s survival together.

I’ve been watching the system fail Jay for a long time, cursing the ocean between us and all the people who couldn’t find an ounce of compassion. Someone so funny, so persistently kind and gentle and patient, someone full to the brim with passion and fascination and ideas, and these agencies look and see…nothing. They don’t care enough to try to understand.
But we’re changing that.

There are two parallel stories happening here, and it’s hard to tell them both at once. Because one of the stories — one that needs told not just for Jay’s sake, but for the sake of thousands of people like them who are being neglected and left for dead — is a bleak one. It’s the story of people who are discarded by society for their differences, whose value is ignored and denied. That story is a cry for help, a warning, and a call to action.

But the other story, the one that is in my heart right now, is a story of hope. I fell in love with Jay a long time ago, and now I am finally watching other people see what I see. Not Jay the crisis or Jay the case, Jay the person. Jay the artist, Jay the dog trainer, Jay the inventor and explorer, in curiosity and silliness and devotion. Jay who remembers a silly typo from three years ago, who rescues a starving little cat from under their porch, who gets a dream and digs in and fights the world until they get it.

This is why I’m honored to wake up at 3 am and struggle through ten channels of chat logs to try and avert a crisis. Why every time I get a call I thank the people who called me to come. Maybe I’m not the best person for this job, and I know this is an uphill fight, but Jay is worth every second. And maybe, between us, we can make an uncaring world sit up and pay attention.

We can help them see how lucky we are
to have someone like Jay in the world.

Magnolia

Jay’s Own Words

It was going well. Then it went downhill. Then it all caught on fire again. I’m so tired and heartbroken. They are at huge risk again. I am at huge risk. My team is at huge risk. The NDIS changed the plan again and now we are not getting paid for our time from this point. They’ve expressly forbidden my team from returning to the house because Jay may have COVID, which means my team are not covered by any kind of insurance if they disobey. They have been forced to stand down. We tried to get Jay into hospital before the last worker finished the last shift, but the ambulance was full of latex and Jay started reacting. It’s just so impossible to keep things on track.

I’ve showered. My mouth has stopped swelling – that’s rather nice – turns out it was an allergic reaction after all. I’m kind of numb, which is think is good at the moment. Safer for me. Apparently I’m being accused of kidnapping Jay. And of endangering their life by trying to get them into hospital. And of endangering their life by trying to get them out of hospital. And of endangering their life by trying to support them at home. And we asked for COVID testing we were told we were stupid. And now we’re told we’re wrong for not taking them to hospital to get it. It’s day 9 post exposure and their only symptom of possible COVID is a sore throat. The blood in their catheter scares me a whole lot more. I have to sleep, I just have to. I have to sleep and hope.

I’m tired of talking for Jay. They are eloquent and amazing. They don’t need me to talk for them, they need the communication device that’s going to take a month to get here, and for people to start treating them with respect.

They wrote a blog post about this situation on their blog and I have permission to share it. Go and see their own words.

Different not less by Jay

How to Stand with Jay

Jay’s Breaking News!

We have 2 new people on board to help with my workload and both are on the ground in NSW and experienced with complex disabilities!

The changes to Jay’s NDIS plan that locked me and my staff out of being able to access it have not only been fixed, they’ve been made retroactive. That means the $10,000 or so I was going to owe in wages this weekend I can now invoice to the NDIS plan to cover. WHOOOOO

We have finally got high level medical support for Jay. Today we were called because they and one of the staff were exposed to a confirmed case of COVID-19 while in the local public hospital ED fighting hopelessly for help. That doctor tried to arrange for Jay to visit the same hospital for testing, given some of their symptoms could be COVID-19. When we explained the ambulances we’ve called refused to take them given they may have a neck or back fracture, they tried to get someone into the house. We all found it impossible to arrange for a swab to be done in the home because currently I’m more like to be able to arrange for a helicopter than I am for masks, gowns, and latex free gloves.

So he went off to speak to someone higher up and between them they saw what so many this past few weeks have failed to see: the bigger picture. COVID-19 is scary and potentially lethal for Jay and yet at present it is not even the most urgent medical need. We need proper holistic medical assessment, diagnosis, and treatment, and it’s not possible to get the tests we need such as scans done under sedation, in a home environment. Nor it is okay to focus on COVID-19 while they are at risk of death or paralysis if there’s a neck fracture, or death by drowning due to feeding in a prone position with a known severe swallowing issue.

Bizarrely enough, the COVID-19 exposure is the best thing that’s happened for Jay’s access to care. What the hell is wrong with our system that this is the case!?

We have a plan of attack, which we will swing into action tomorrow. For now, I’m going back to tackle all the admin that will make paying staff possible, and dealing with the remaining cash flow crisis – I owe thousands in wages. Tomorrow will be admission to hospital and me chasing up every loan option I have available.

We still need donations towards all the incidentals not covered by NDIS, but far less urgently than before. Mostly what I need right now is low or interest free loans so that I can resource staff to pay critical costs in their own lives while we are waiting on money to come in from the NDIS.

Gawds it’s SO GOOD to have a good update to pass on!

How to Stand with Jay

Carrying Jay

I’m near collapse. If the hospitals weren’t full of COVID-19 I’d have asked for admission. My tongue has been swollen for days now, cracked in the middle and ulcerated along the edges. My body is in so much pain it’s not always possible to walk or even type. My saliva is thick and foamy despite frequent drinking and crystal clear urine. My hands cramp. My eyes are dry and hurt.

The cognitive losses are likewise showing. I move in and out of having such a profound stutter I can barely speak or cannot speak at all. It’s getting harder to tell the difference between me and Jay except this is a tiny taste of their vulnerability and exhaustion.

Jay’s team is under horrific strain. Today we learned they were exposed to a confirmed COVID-19 person in the public hospital ED last weekend. They have been working around the clock high intensity shifts. No one has any money left for taxis and basic supplies for themselves at work, much less their own rent, student fees, medical costs, and food.

We have an agency ready to step in this week for a range of shifts, but we need disposible gowns, latex free gloves, and masks. Can anyone help me source these for Outer Western Sydney urgently?

Jay is presently stable. They have had several health crises to manage over the past few days, and we have discovered the agonising imperfection of emergency health care systems not designed with people with disabilities in mind. They remain at home with staff, on antibiotics. They are still in 9/10 pain from what we assume is an untreated spasticity crisis, but may also be underlying trauma such as fractures or bruised bones from various falls and poor handling. Without access to proper sedated scans we cannot be confident in the medical clearance they were given, given the severity of the pain.

Jay remains determined to survive, devoted to their family, distressed by the impact on the local staff, and afraid that somehow, some of this is in some way their fault for being complex or difficult or… I don’t know exactly what. Not normal? For daring to reach out while in unimaginable suffering, and now witnessing the sharing of that suffering in a smaller way with the people who heard the call and have come to help.

My wonderful long time friend Nick Jones created this artwork and meme for me today. It’s helping to help me going.

Image description: artwork depicting space with planets, nebulae, and a tiny spaceship in the distance. White text overlay of a wrote from the Firefly series “When you can’t run anymore, you crawl, and when you can’t do that… well, yeah, you know the rest.” In the series the final line not mentioned here is “you find someone to carry you”.

It is not easy to be the eye of the storm and the epicentre of such anguish. They bear it with dignity and humor and vulnerability. I want to meet them so badly. The state lines are all closed, I cannot do a midnight race to be by their side. How often we have thought they are dying in the past week, and I’m trapped interstate in frustration and despair.

Indulging hopeless fantasies of last minute Bruce Willis style rescues, careening into the ed of a local private hospital with a suitcase stuffed with the deposit we’d need, Jay making jokes about my sanity, me swearing like a sailor, the team providing remote support yelling the directions for the hospital to me over my headset, or crouched on the back of my stolen accessible taxi ambulance, holding Jay in their wheelchair as I hurtle around corners.

In this fantasy the denouement is a place of white and sterile peace, nurses slipping past a room in soundless shoes, a quiet efficient, reassuring hum of paperwork and handover and obs. Jay lays in bed, sleeping deeply and peacefully. The hospital is everything everyone dreams it can be, a safe haven with deep and calm acceptance of all the differences that block access to care for Jay now – trans, disability, non-traditional relationships, neurodivergent…

In my imagination, Jay’s team of support workers are all in their homes, safely sleeping the deep peaceful ready of front line crisis staff who are finally off call. I’m sitting next to Jay, not too close, but close enough to be able to see if their sleep turns to nightmares, to offer a hand to soothe.

On the other side of the bed is their partner Avery, ragged and unwell looking but no longer in unbearable constant agony. He holds Jay’s hand and sleeps awkwardly between chair and bed, face pressed into Jay’s arm, hands clasped around their hand. Magnolia is on the phone,

People step into the early morning light of the room. It’s the special support coordinator, the hospital CEO, and a high ranking police officer. They smile at me wryly and don’t speak. The police officer has an autistic non verbal child, and has briefed the other two. They step to once side and nod at me the way people are very old friends sometimes do when they meet again across crowded spaces. I nod back, get up, and walk out of the door with a heavy tread. My injuries and exhaustion have been tended to, the crisis is over, I’m no longer needed.

I walk slowly out of the hospital and into the dawn light. The sky is luminous, like a white pearl. My family are waiting for me bedside a fountain at the entrance to the hospital. Poppy runs to meet me and I have strength enough to lift her and twirl her around she giggles in delight and buries her face into my neck.

Rose comes slowly forward and holds me, eyes searching mine for confirmation it’s finally over. She breathes a deep sigh of relief. We hold each other, cheek to cheek. Lacing her fingers in mine to head home together, I can feel the unyielding firmness of her engagement ring between my fingers.

In my mind’s eye the next dreams start taking shape. We are standing beneath trees in the winter, isolated by COVID but connected by technology and community and love. We’re both well, we’ve been paid and tended to our health. We say our vows and kiss beneath a rainy sky and the massive trees. My heart catches fire.

How to Stand with Jay

Jay is trapped in bed

We need urgent help

Image courtesy of Image by Николай Егошин from Pixabay
Image description: large house fiercely on fire in the night, guttered with the windows burned through

Context:

Updated list:

More details:

In Home Safety Issues:

  1. Raised by RN
  2. Raised by Support Worker
  3. Raised by Jay
  4. Verified by Occupational Therapist – pending

Current Status:

I need 2 staff 24/7 with Jay and there is nowhere in the present home for them to sleep, and no separate spaces for them to have downtime. Due to severe sensory issues they also need to be able eat away from Jay, as most food smells are highly distressing and many cause meltdown/shutdowns.

An occupational therapist visited yesterday morning for staff training with safe use of hoist. Could not proceed,  Jay was in too much pain and then went into meltdown due to overwhelm. OT has shut down use of hoist, shower chair, and commode because of the severe pain Jay is experiencing. Given we don’t know the cause of the pain, we are risking potential severe injury to them if we mobilize them with the hoist.

Jay spent the weekend in the local public hospital ED. We called an ambulance for them when their pain escalated into crisis with symptoms mimicing a heart attack. Jay has no ambulance cover – we have promised we will cover it with our donations fund. (THANKYOU ALL!) Edit – wow it turns out NSW has different rules around ambulances to SA and there will be no cost. Awesome! We really need to do something about that here where I live.

Jay was unable to get proper care or assessment in the ED despite everything their entire tried over the whole stay. And I mean EVERYTHING we tried – but that’s a story for another time.

His GP was booked for an urgent telehealth appt over 2 weeks ago but has never called. This is the GP who has not followed up on a highly vulnerable trans client who’s hormone shot is over a month overdue. Apparently this is pretty common for them – can’t even blame COVID19.

Trapped in bed

Trapped in bed at present without capacity to get into their wheelchair. Jay now needs 2 staff available 24/7 to enact pressure sore protocols (need to roll them every 4 hours and apply cream to skin) – we think – we can’t yet get anyone into the house to tell us! Jay’s skin has already thinned badly due to a long time trapped in bed while abandoned in their home – also a story for another time, but I can tell you it’s been a really bad year for Jay.

We urgently need a GP for a wide range of assessments and referrals related to chronic and severe neglect.

We also have immediate medical questions we are not qualified to answer and we need a GP or someone trained to guide us!

We need from a GP: Immediate:

  • We need covid tests for Jay and all staff. The ED Jay spent the weekend in was a hotspot for covid but refused to refer or administer tests or medically assess the support workers. This means we can’t take them into places where high risk residents are in lockdown. We need clearance to open housing options or to know housing options closed because we are now infected and risk killing the rest of the residents. 
  • We need medical assessment and advice of the risks of using the hoist to mobilize into the chair, vs feeding someone with severe dysphagia while lying down in bed. 
  • We need to assess, diagnose and treat the pain crisis or provide referrals to those who can.

We have managed to arrange:

  • 9 April disability specific physiotherapist for telehealth assessment.
  • 14th April we have booked trans friendly GP: should be able to provide script for hormone, we can then hire a nurse to administer. 

Jay reports a bad sore throat today and has been feeling constantly very hot then very cold for the last two days despite no fever on the thermometer. This lack of temperature regulation is very concerning given other health conditions. Jay reports severe neck and back pain, radiating down both arms, which is especially concerning because Jay is usually unable to feel pain even if it’s a really bad injury. We are all afraid something very bad is happening medically. We desperately need a disability GP with experience in spasticity – we are making calls and waiting to hear back. If you know anyone – please get in touch with us urgently, my phone is on 24/7.

How to Stand with Jay

Looking for NDIS support workers

I need a couple of new folks on my teams, one in the Western Sydney Parklands/Mount Druitt area, and another in the Northern Adelaide area. Both folks need people with integrity, disability and mental health experience, and who are taking the COVID-19 health and hygiene precautions super seriously.

Whether you are already working in the NDIS, run your own business, are new to the NDIS but experienced with disability and mental health, want to be subcontracted or employed, I’m pretty flexible. The model can be variable, it’s the person and capacity to learn that I’m focused on. Get in touch and lets see if you’re a good fit.

You will need to have or get a clearance for working with people with disability, full first aid training, medication handling training, and COVID-19 hygiene training (the last one is free and easy to arrange). Your own car is vastly preferred. Lived experience of disability, diversity, neurodiversity, and so on is preferred but not essential.

Dearest Rose

Who is she? This woman I fell in love with seven years ago? We play supporting roles in each other’s lives. We wound each other in ways no one else could, deep in each other’s heart. We live in the brightest hopes and most painful broken dreams of each other. We are each the sun to the garden of the other. She speaks and my ear is a basket gathering petals. She is the child in the night, sleeping under a roof of stars and never entirely comfortable in a house again. She is the cat purring by my chest, full of love. She is a kite that flies out beyond my grasp, never entirely mine. Never tamed or owned or fitting within one role or name or way of being in the world.

She adores me. Her devotion is terrifying. She wraps her life around me, her hopes and belief in the future. She’s tender and generous. She forgives.

She hurts me. I live in the shadows of her wounds, in the debris left by everything that shattered and starved when she was excommunicated from a world where there was enough food, love, safety, and hope.

We dream new dreams. This is the first challenge after loss. Without new dreams there is no life.

We grieve. We learn how to say goodbye, how to let go and hold on. How to let go over and over again in a thousand little ways, like prayers for the future to be worth living for.

We own the scars. We find pride in them, we hold them tightly. We find the world ended but we are still here. We live with our mistakes and we do better.

We reach into the gap between dreams and reality and we do the work that bridges it. The hard and glorious work of being liberated from the past. To expunge the shame and agony. To let the memories burn down from raging fires, to coals, at last to cool ash.

She blesses me with her kisses and her silences, her fingers restless tapping my skin like rain on a window pane or a broad leaved plant. She holds my heart. All my world has been planted in her chest, birthed through her love. She gave me my daughters. She remembers the trees for me. She is my love.

Speaking about vulnerability

Well. So while I was wrestling alligators, fighting off polar bears, and manhandling monster trucks… I tripped and fell hard in my driveway. I’ve broken my left arm and bruised and sprained a few other things. For someone who has been busy with NDIS work driving to people’s homes this has been pretty inconvenient.

ID: smiling person with short brown hair, snuggled on a white couch under a faun blanket. Their left arm is wrapped in a thick white bandage.

It did mean however, that I was unusually available for a short notice speaking opportunity today. One of the reasons my work crosses several areas is to help me stay afloat when encountering difficulties like this- I’m not much use as a gym buddy for one client right now, but I don’t need my left arm working to talk about diversity and vulnerability.

It’s a precious thing to be offered the floor in a space like that, an expression of trust and hope that you’ll help people find the words for what needs to be said. I’m home now, exhausted, pleased, strangely sad in that indefinable ‘post event’ way. I know the real work starts after I walk out the door, the challenge of holding safe spaces and integrating complexity.

I find myself so moved by our common ground, the similarities in our hopes and struggles to be human whether we are the most fortunate or most destitute. And how unaware we are of each other, but where the blindness of the poor makes little difference to the lives of the powerful, unawareness for the powerful builds the walls that exclude and create so much needless suffering. The burden of responsibility is so much higher, and our need for allies in those spaces is so great. I’m glad to play a small part in humanising people to each other. Our work in that space will never be finished, but I believe each moment counts.

At the end of the day

Curled into bed at the end of the day with my little girl in my arms smelling sweetly of honey soap. My garden is growing wild in the darkness outside, full of seeds thriving and vines twisting and the ghosts of birds long since bones. The fan rattles on, talking to itself. Cats come and go. My bone pen calls to me like rain far away at sea or over the mountains, unheard but felt in some strange sense we have no name for. My Studio is a ship far out at sea with the lights still burning. My little girl radiates the soft warmth of a banked fire, embers safely glowing within her chest.

My work is good. It satisfies me, immensely. A parched place within is soaking in the long steady rains of over 2 months constant work and much more booked in ahead. I’m turning down many opportunities and focusing on my areas of strength and passion. The NDIS support worker is complex, challenging, taxing, subtle, and deeply fulfilling. I feel of use in the world and with the help of my business mentor I am starting to shape my business into a sustainable and enjoyable model, with a balance of creative and intense emotional work. My life is incredibly full.

Rose is out at Amanda Palmer, it was by far her turn and she needed the opportunity, the inspiration, connection, and compassion I’m sure she’ll find there. We both went too see There Will be no Intermission for our anniversary and it was stunning. Such raw honesty, brutal intensity, deft humor, and compassion. Amanda delivered something incredibly dark and beautiful.

Rose, my beloved, continues to wrestle with her old demons. She’s walking a hard road at times with horrendous anxiety. But she’s also stepping into her own work and volunteering opportunities as well as being Poppy’s primary carer. We are all learning how to grow plants from seed together, and she tends a small veggie patch I organised her for Christmas. The roses are stunning in bloom, by far the most luminous is Jude, the rose she chose the weekend I proposed in what seems like a hundred years ago. Sometimes our path is painful but there’s also so much tenderness in it. I’m so grateful to her for the joy and spark she brings to Poppy and I, her joy in the little things, her creativity and sense of adventure. She is utterly ernest in all things and so devoted. I’m hoping she was able to open her heart a little tonight and soak in something precious. She so deserves all the safe, inspiring, dark, raw, and soulful nights in the world.

Helping bush businesses after the fires

The fabulous folks I volunteer with at the Freelance Jungle have stepped up in their own unique way after the horrifying bushfires here in Australia. They’ve put together a new projected called Skills for the Bush, where self employed people from anywhere in the world can register to donate their skills and time to support a bushfire affected small business to recover and grow.

Read more about the great project on the Freelance Jungle blog post Freelancers Helping with Bushfire Recovery, or sign up through the Skills for the Bush survey.

I know many of us are already donating and supporting causes. I also know that many of us feel helpless in the face of the sheer scale of the disaster and how long support efforts will be needed. Participating can be powerful way to reduce the impact of vicarious trauma, so whether you are driving supplies for fruit bats, buying quality face masks to donate to fire fighters, or getting involved with the Skills for the Bush project, doing something sustainable and connecting benefits everyone. ❤

Where I’m going in 2020

I’ve just arrived safely in Melbourne for the LGBTIQA+ “Better Together” conference. (Say hello if you’re coming too) I’m tired and excited and really looking forward to it and meeting all the other amazing folks.

Image description: smiling person with short hair and a bright blue shirt with the image of a kitten asleep under a book and the slogan “Curl up with a good book”.

I have Rose to thank for the cool t-shirt. I’ll be away for 5 days and my heart aches knowing the nights will probably be tough for Poppy. I, on the other hand will probably get a bit more sleep while I’m away. Parenting dilemmas!

ID person in a blue shirt and a child in a yellow shirt tendering hugging each other

It’s been a full on couple of months. Massive bushfires have been destroying huge areas of Australia. It’s an unprecedented disaster with the largest evacuations we’ve ever experienced. The losses are staggering. Some folks are in the thick of it, while those like me who are lucky to be safe are watching with horror and confronting survivor guilt and vicarious trauma. Helping out through donations and community support eases the helplessness and is a small balm to the fury and grief. Sometimes it’s big things, others it’s smaller gestures like taking fruit to the local wildlife carers or joining in a working bee for a local damaged farm. Anything helps to unfreeze, to ease the impact of months of bad news and horrifying casualties.

If you’re feeling paralysed, silent and distraught like I’ve been, you might find it helpful to look for something small you can do and do it. Look for good news, for people’s kindness, and share that too. Walk away from it at times to build your capacity to stay engaged and not burn out.

A lot of people are in terrible pain, facing life threatening conditions, or handling thousands of burnt animals. These are all high risk for trauma, and the survivor guilt of those of us who are lucky can lead us to torture ourselves as if more suffering would somehow help. This is part of vicarious trauma, and things that help with this are connection with community, breaks from it, humor, and keeping a clear sense of responsibility.

It is not my fault, I do not deserve either my good fortune or to be punished. I am a better ally and supporter when I’m not overwhelmed.

The other major focus for me has been my work and studies. I’ve been in an intense process of wrapping up projects and studies and launching new ones.

I’ve completed my grad cert in public health with mostly high distinctions. The mentoring program with Sally Curtis has started and been full of invaluable learning already.

I’ve started in two new LGBTIQA+ representative positions, one on the Consumer board with the Southern Adelaide Local Health Network (the hospitals, rehab facilities and so on). The second with the Freelance Jungle as an admin on the team which supports a 5,800+ online group of Australian and New Zealand freelancers. I’ve been a member and then patron of the group for a couple of years, and it’s a fantastic resource with a great focus on mental health and inclusion. The Better Together conference will help me understand both the needs and resources of the wider community.

Consulting and community development work has been so satisfying last year with a creative health project in prisons with SHINE SA and a peer based research project about systems change for people living with chronic illness with TACSI. I was so pleased to support these, they were both work I’m very proud of and look forward to sharing more about.

With face painting I’ve been getting more work from councils and organisations aligned with my focus around diversity and inclusion, such as schools for autistic kids, or queer events, which I’m very happy about.

I’ve launched a whole new arm of my business, providing independent support work for folks through the NDIS, with a special focus on mental health and diversity. It’s going very well and I’ve found that I love it even more than I anticipated. Being able to cone alongside people in their lives and homes and provide personal peer based support that is therapeutic but not ‘therapy’ is simply wonderful. Like a doula it’s a flexible mix of practical and emotional support, looking towards bigger goals but also very present in the moment.

It’s very similar to the group work I used to do in mental health services, such as facilitating the hearing voices group. I’m part of a small community of practice with a professional organiser and a handyman, and I’m setting up supervision and a network of resources. I’ve been extremely busy with it which was a bit unexpected – it’s taken off very quickly and I’m largely booked already.

I’m also booked to deliver a new series of local creative workshops which I’ll share more about shortly.

My work life is all coming together under an umbrella of creativity and diversity. I’m very passionate about it and excited to watch it grow in 2020. I’m putting applications in for further part time studies to continue to develop my skills in this area, and looking forward to getting back in the studio sometime to pick back up my current project there.

Thank you all for your encouragement and support, it’s taken me awhile to find my niche but I’m incredibly happy to be doing what I am, and feeling very aligned with the values and quality that links my different business areas together. 🧡 If I can support you or your project in some way, get in touch and let’s talk.

Darkness and brightness both

Taking my little love to the pool in the hot weather, she runs before me splendid and energetic while I shadow her, watching for danger. She is everything I ever hoped for.

Both girls home, baking in my kitchen. My heart bursts with joy.

Away on holidays with Nana, who is too sick to stay. The big plans get put aside again and yet I know, how deeply I know, the mundane things are sacred. She brushes Poppy’s hair, we play a child’s board game together on the floor. When health is lost these are the things you dream of, to have enough strength in your arms to brush their hair.

Some mornings I wake to the feel of death and the memories of those I’ve loved. If I can find way back into my dreams I often wake later to a different, kinder world. Sometimes I find myself reaching for a sense of meaning and falling instead into a dark void. Each time I must weave my own answer, and each day the answer needed is new. My life slips through my hands in fretful hours.

There’s been such pleasure in my studies. My mind enjoys complexity and challenge. The health of groups is a topic well suited to me. I’ve learned many things that have been questions for a long time. I’m always asking questions about the nature of the world, of reality, what it is to be human. My life can be measured in my pursuit of understanding, what had emerged and from which sources. I find myself curious that in some ways public health is so ignored. We consult psychologists about the health of crowds when they spend very little time studying this. When you want to know why individuals behave as they do, they are excellent. When you want to understand why entire groups behave in certain ways, public health is invaluable. It embraces complexity, exploring the causes and the causes of the causes. Social determinants emerge and I find research to support many private theories and wisdom from lived experience. It’s incredibly validating in many respects. It provides the context I’ve been craving.

I’ve gained confidence and learned gradually how to not write to excess, to do only what is required. My marks are very high and I feel a thrill of accomplishment. I’ve been exploring my next study plans for months and have not yet settled on a solution. Pleasure is one thing, but viable work another. I remain perplexed by the challenge of what I can meaningfully and profitably turn my hand to.

I still wish to pursue my questions, to build frameworks and explore knowledge. I adore learning and even more so in the company of other learners. I have theories about psychosis and multiplicity I wish to develop and share. I know there’s such a need for training and teaching that’s complex and authentic, so that calls me. I’m still seeking more understanding of wildness, art, Narnia, poetry, safety, and why some things make us feel alive while others numb us and break our hearts.

I’ve started working with a business mentor I have great respect for. Gradually I’m untangling some of the knots that have bound me – the need for my work to be somehow unique and spectacular, to build it quickly, to find confidence despite crushing experiences and limited qualifications, to not work alone, to work in ways and places that use my skills and skirt my limitations. To have others set my pay and value my skills because my self loathing forbids me to set myself above the lowest paid and punishes me for ambition or self interest. The fog slowly clears and I find some possibilities emerging. I cannot tell how long the path is that lies before me, and I’m often silenced by my awareness that showing behind the scenes of this area reduces confidence in my capacity, that when I pull aside the curtain to show my doubt and humanity I do so in the terribly shiny setting of consultants and entrepreneurs who sparkle with confidence. Authenticity and public sharing have costs and limits I struggle at times to navigate. And yet, so much of my credibility is based not on my book knowledge but on my capacity to articulate things I’ve directly experienced, and synthesizer it with wider knowledge. And that includes the darkness, the self hate, the terrible blocks that keep us from things we dearly love. I’m not alone in this struggle and neither are any of you. Struggling is part of being human.

In therapy I’m working on self compassion, an extraordinary challenge for someone deeply wedded to self loathing. I pick apart old journals and blog posts, looking for threads and connections. Somehow it’s connected to my struggles with paid work in ways I don’t yet understand. I’ve been trapped here a long time and my struggles, hopes, and self hate have not freed me. I’m trying to face it with calm acceptance and find compassion for this unreachable dream and my own compulsion to keep reaching even though I fall every time.

When I let go of paid work I feel free, and then my sense of self and meaning fray and I start to free fall into despair. When I strive to grasp paid work I become broken by my obsession, working intense hours in impossible circumstances and exploiting rather than nourishing myself. So the path forwards becomes not one thing or the other. A medley of intention and distraction, a part time world of parenting and art and study and paid work and therapy. It is extremely painful, utterly confusing, and thrillingly wonderful all mixed in together.

I don’t have those answers yet but I love and I am loved, and I’ve found good company for the journey. My heart is a tangle thorn and my hands are shredded but my mouth is bright with kisses and my books comfort me when the world goes dark.

Studio Opening Success

My Studio Opening was delightful. Thank you to everyone who came, brought gifts, sent messages of support, or signed up as a philanthropist, I feel very loved. It was a pleasure to share my space and I’m delighted to hear it was inspiring for others creative pursuits too. There’s something incredibly special to me about studios and behind the scenes peeks into the home and birthplace of art. One guest is even looking into renting a space themselves, and there’s several lovely Christmas gifts safely on their way to new homes. The weather was bizarre but the cookies were delicious and the company even better. 💙

Image description: non binary person with short spike brown hair and teal lips smiling at the camera in front of art sketches and photos pegged on a string.

I’m about to leave for a week, when I get back I’ll create a walk through video and share a few special embellished prints I’ve been working on recently. I’ll also send my first philanthropist only email and start my gift lottery for these wonderful supporters. You folks are the best and I’m excited by what’s possible with your help.

Embroidery sampler

It’s been a glorious day. I’ve handed in my final large assignment for my grad cert in public health. We’ve passed our rent inspection. I took the day off and went to the zoo with my family. It’s the first day in about 6 weeks I haven’t woken up feeling hideously anxious. I’m happy.

Image description: a needlework project in progress. A multicolored bird embroidered using a range of stitches onto cream cotton. On the right is a pouch of sewing tools and threads, above that is paper with a sketch of the bird and names of the various stitch styles.

I’ve taken up embroidery again because I find it helps when my mental health is rough, and I’ve been grabbing onto everything that helps. Darling Rose is dealing with a lot of trauma stuff, which means I am too. My doctor put me on an antidepressant to try and reduce my anxiety, the starting process of which has been absolutely brutal with severe side effects including ironically enough severe panic attacks where my body goes into shock and chills. They are finally starting to ease off which is such a relief. I’m starting to embrace my life balance of part time work, part time study, and part time looking after my family – along with play and rest and hobbies and friends. Getting out of my obsessive focus on work is very difficult but so rewarding.

I’m absolutely thrilled that I’ll be graduating. I now have so many further education doors open to me and I want to do all of them. I’m taking my time deciding.

My week still contains holding the fort after trauma therapy, preparing for a family holiday, my studio opening, and face painting. I feel so relieved and joyful after every goal we nail. At some point I’ll finally empty my inbox again and all will be well with the world. In theory.

Embroidery is something I initially took up when very ill. I’ve loved doing it again, the little bird is a sampler of useful stitches to use as a guide for other projects. There’s a major art series I’d love to do one day in embroidery so honing my skills will help with that. Right now it feels like I’ve been battered on rough seas for weeks and I’m finally resting blissfully on an island in the sun. Soaking it in.

Blessed with more days

I’ve made it through the surgery. The procedure itself went smoothly, the post op care was a mess but I’m happily home now and ensconced on my own couch with books and films, dreaming of the next steps, the days on the beach with my daughter, moments of closeness with friends, projects and opportunities waiting for me.

Image description: three large ruffled pink poppies, flowering among green leaves and purple irises next to a black rail fence.

I’ve got the books Frida Kahlo at Home by Suzanne Barbezat which is gorgeous and embeds her artwork in the context of her life and philosophy, and Her Husband- Hughes and Plath: A Marriage by Diane Middlebrook which is surprising, dark, and clever. Poppy is still destructive to physical books so these days my library is mainly on my phone. Reading physical books is a kind of luxury.

The garden is in full bloom. My people are alive and well, I am alive and healing. The world is beautiful.

Transforming the forbidden

This blog has been a curious project to understand. I’ve always related to Stephen King in his book On Writing where he describes thought dumping his first drafts then sending them to close readers who help him understand what he’s written so he can edit and shape the work into something coherent. Every year or so, I find myself reflecting on the role this blog plays in my life, why I’ve written it, and what I’ve written.

I started to share publicly, to advocate and humanize and in that respect I feel a sense of peace and accomplishment. Things that were once my dark unspeakable secrets have been put into words, images, poems. Given context, embedded in community, spoken aloud. I have made a platform from it, tackling the difficult topics, confusing diversities, and isolating traumas. I own those secrets now and wear them in public. Yes, I’m strange and different, and this is how, and this is why, and this is our common ground – that we are all in some way strange and different, and that we are all human and often longing for the same things from each other.

I’ve learned more words to describe what I’m doing here: intuitive artist, social practice arts, discovery writer and one of my favorites ‘pantser’ (those who write without plans, but fly instead by seat of their pants).

I’m struck by how many people in my world know things about me and my ideas I can’t see how I would ever have found a way to share otherwise. I’ve used this blog to bridge many gaps between my strange self, my largely invisible experiences, and my community. Always building connections in some way.

I’ve documented parts of my life, both the carefully researched and constructed reflections, and the beautiful or sad trivialities that make up the rich detail of a life. I’ve aimed to make myself human, and public, at a time where we don’t talk about multiples as human but as liars or freaks. I have a soft spot for freaks and embrace freakishness in my own way. We’re all freaks, and that can be so lonely, but it doesn’t have to be. Connection, empathy, bridging gaps between us are easier when we are alike, but possible nonetheless. It’s less about finding similar people and more about learning to listen and be heard. That’s a magic I’ve finally begun to grasp, after so many years of feeling different and looking for people like me. It’s not about ‘people like me’, it’s about people who are listening, the way I’m listening to them. It’s about love.

I’m going into surgery tomorrow. I strongly dislike the feeling of general anaesthesia. Falling into the void and having no control terrifies me, I fight it and the more I fight, the more powerless I feel and the more terrifying it is. I can only submit and rest in it when I’ve made my peace with death. This year that is hard. I’m not at all ready to die. My eldest is fighting with me and my youngest is so young. I want to be here with every breath in my body. My Grandpa was not ready to die either. Yet he is gone. My friend Leanne didn’t go to bed at peace with Death, that last night. Narrative arc, fairness, or the power of love are no armour against the fragility of life. Peace is hard to find.

It is what it is. Despite all the broken and unfulfilled dreams, the incomplete artworks and friendships that never quite ripened into closeness, I’m proud of what I’ve done, who I’ve become, how I’ve lived. I’m proud to have been part of your lives, all of you I might never otherwise have met or known, all of you who know more about me than our meeting would ever have normally permitted. The rules about public and private life are largely arbitrary, unthinking, even brutal. Many can be summed up simply: joy is to be shared, pain is private. How stunted our lives are when we obey those rules, when we suffer alone and come to believe we are alone in pain, the only person to have felt what we feel and wrestle with what’s drowning us. More so for those of us who are more hurt, or who’s entire lives are deemed to be suffering: disability and illness of which we should not speak.

These things are universal. Our fragility is part of what makes us human – our capacity for loneliness, grief, despair, even self hate. Our yearning. Our fear of rejection and abandonment. Pain is best bourne in connection. Somewhere out beyond the fear of inpropriety or oversharing, is the transformation of the forbidden experiences we feel most taint us, into the universal threads of pain, courage, humility, and hope that connect us.

It’s foolish and maudlin to think of death, gallbladder surgery has minor risks. As a multiple I switch and fall into voids I can’t control or explain many times a day. But it is what it is. The world has tasted sweeter this week. I’ve looked more closely, soaked it in. Sleeping beside my daughter is one of the most beautiful experiences of my life. My garden is in full Spring bloom, spectacular and luscious. My darling Rose has cooked and cleaned and held a space for me in a way that soothes my heart. I’ve finished admin, touched base with my people, cuddled my cats, finished reading my book and downloaded many more to start.

I never know quite what I’m doing, at the time, only in reflection do I glimpse behind the curtains to the needs and longings and beliefs that animate my actions. I’ve fallen far short of my hopes in many ways. But of what I’ve made here, I’m glad. In a world swamped by sales funnels, content creation advice, and strategic business cunning I’ve been as useless and embarrassingly sincere as any poet. I’m glad to have touched your life, fellow poet, freak, artist, madman, flower grower, dreamer, and/or reader. Until tomorrow, with great love.

Making friends with failure

I have spent the morning in my local hospital going through pre-op assessments for my gallbladder surgery next week. I am nervous and excited and relieved and have that vague niggling worry that perhaps I’ll somehow not make it through the procedure and this will be my final week alive. Anxiety is so dramatic!

But I’m in good spirits, yesterday a friend kindly helped me move my things from the wonderful office at SHINE SA to my studio. I’ve been planning this since I moved into my bigger studio space, but needed moral support and assistance and every time I made arrangements something tricky happened at the last minute. Well, not this time! We packed up a whole lift full of art and project files and filled up a desk at the studio to be sorted through later.

Image description: very old style wooden lift half full of boxes and bags of canvas paintings, books, and stationary.

There were two major challenges to work through, the first is that I have mixed feelings about the move. It’s absolutely the best next step, having everything in one space will streamline my work processes and make life much easier. But I love the folks at SHINE and will miss them, and my failure story is easy to trigger with anything I’d hoped to do but couldn’t bring to fruition, like some of my business plans during the residency that took a back seat when I was needed at home.

Our second moving challenge became apparent once we finished unpacking everything into my studio. No keys. They were on the bench in the lift, which is collapsible and was bumped at one point. Meaning they dropped unnoticed into a bag or box. We eventually found them in the back of a magazine folder full of hand made book making instructions!

I alternated between packing and crying, which I didn’t particularly want to inflict on the lovely staff, hence the perfect timing of a public holiday. Fortunately my helper was an art therapist who was excellent at distracting me whenever I started to fall down the failure well!

If you’ve come through childhood adversity you probably have a failure story too, created from all the bad memories, dreams you couldn’t reach, times you let yourself down or were failed by others. Most people who’ve been mistreated or abused, especially by someone they cared about or looked up to, have strong failure stories about not being able to find a way to stop it. Unemployment, especially long term, can deeply grove a sense of social rejection, exclusion, worthlessness, and failure. Gifted people who struggle to feel they’ve lived up their potential, people who had plans derailed by illness, or who found disability or mental health struggles meant no one saw potential in them often have strong failure stories too.

My failure story is incredibly strong and like most people’s, very painful. For me it’s particularly around work, fueled by misplaced shame for needing welfare and years of being forced to apply for unsuitable jobs. It’s taken a very long time for me to understand my failure story means I need to mindful of certain emotional risks I might want to take, to gather support around me in some settings. And that it in no way speaks to my competence, capacity, or worth. It makes certain things very hard for me and fuels high anxiety and overwhelm in some situations, but in many others it’s a minor background noise, aquiescent as a sleeping cat.

Most of us have a failure story of some kind, but in work and business we are strongly encouraged to keep them hidden. This creates a toxic culture because if no one is safe to fail or even feel like a failure, no one can risk or be vulnerable. Without vulnerability or risk there’s little creativity, innovation, or human connection. Safety and failure are intrinsically linked.

Considering my art and community development work need creativity, innovation, and human connection, I’m learning I need to make friends with my failure story rather than ”recover from it” and put it behind me in work settings. It’s actually a valuable part of my history and the foundation of some of my skills – if you’re building rapport with someone is that easier to do with a human who has failed, or someone shiny and perfect? It’s such a common mistake to hire a shiny person for a job where you need a human. And such a common misunderstanding for people like me to think we need to be less human and more shiny to be professional. In some ways it’s actually a useful resource, a point of common ground to help other folks who are struggling to feel safer around me and to help me design and implement resources and engagement approaches that click with them. That’s hard to do for folks in strife if you’ve never been there yourself. Shame is destructive but humility is valuable, and we rarely learn it from our successes.

Rebellion and Glee

Our lives are easily stolen from us, consumed by grief or given up to ideas that give nothing back to us. It’s been a strange week, in an odd way a wonderful one despite sadness and sickness. I’ve been playing with choosing what I want to do and being less ruled by anxiety and duty. I eat what I want to eat which is frankly a bizarre and liberating rebellion for someone with chronic illness – which is always targeted through diet by doctors and witchdoctors and people you meet at the bus. I’m enjoying a book by Laura Thomas, Just Eat It. Slowly overhauling my relationship to food is sumptuous.

Image is of multicolored flowers

My friend brought me these stunning flowers when my Grandpa died. I got stuck having a transvaginal ultrasound recently and added to quality chocolate to the indulgence. I’m fiercer and enjoying life more, the more I push back in tiny ways against the self sacrifice that’s been so ingrained.

Image is of an orange beetle painted onto a white skinned arm, resting on a black and rainbow knitted blanket

Face painting and glitter tattoos have started up again with the Spring. I’m doing more work in my diverse communities of interest, particularly LGBTIQA+, and disability. It makes my heart happy.

Image is of a 3 year old child in a rainbow hat feeding an ear of corn to a capybara

Poppy and I are back in our grove of regular adventure days. Today we went swimming, then scooting in the park, and lastly painting. Recently we went to circus skills Training With Cirkids, then Gorge Wildlife Park with our friend who works there.

Image is a self portrait of Sarah’s face, in bed u tucked into a purple blanket and looking unimpressed

I’ve been sick with something not yet identified, very painful, but not infectious. Grateful for my laptop so I can study in bed. Grateful for Rose who works around me and cooks me wonderful meals.

Image is of a cupcake in a green case with white icing

It was a friend’s birthday party recently and I indulged in baking. These are lemon meringue cupcakes, made with vanilla sponge cake, stuffed with lemon curd, and topped with meringue icing. They are delicious. I got the ultimate cook compliment when a crew of folks at the party who didn’t know I’d made them dragged each other to the plate and rhapsodized while devouring them. I have brought a large plastic tub from the local hardware store so I can easily soak my trays, which makes the after-baking cleanup slightly less onerus.

Image is of a yellow cupcake with lemon curd in the centre and white icing, cut in half. It’s on a white plate with a decorative floral border.

I’m back in the swing of study, this time going down the rabbit hole of climate change and environmental impacts on health. It can be brutal at times so I’m using my standard approach – find the people I love and break up the depressing or awful stuff with things that strengthen and encourage me. I’m not sure what I’m getting into next year yet, but I’m determined I’ll be doing something. It’s far too fantastic to walk away from.

Death of a grandparent

Tonight we had a picnic dinner in hospital to visit my Muminlaw. Poppy was the life of the party, leaping off a bench into my arms, helping to rub Nana’s sore feet, and clambering about like a monkey. It is very precious to spend this time together.

We had only been home a few minutes when I received a call that my grandfather has died of a heart attack. I drove up to the hospital to sit with him and people in shock. We did not get time to rub feet, tell stories, or be close. In fact, tonight was the first time I’d seen him in ten years. He was not a queer friendly man and I didn’t need any more relationships that crushed me. When he got sick recently I’ve been behind the scenes, supporting my mother as she struggled to arrange care for him. I planned to visit shortly, but not with Poppy. She’s facing enough sad and confusing situations already.

And just like that, his book closes. I have many wonderful childhood memories of him. Some bad later ones. We last properly spoke at the funeral for my grandmother, whom I loved dearly. It was a rare moment of clarity and connection and I knew it would likely be the last time we were close. He was uncharacteristically tender and it’s a treasured memory. He’s my last grandparent to pass.

Life is strange. His story is neither triumph nor tragedy. He was complex, a devoted man, also a bully. He was lonely. I have been painfully aware of how leaving behind all these people has torn great holes in my life but I don’t think I have realised the holes I’ve left too, that I’m as irreplaceable to them as they have been to me, these people I’ve loved.

I wish everything had been different. I wish he’d had a better last few years, a better death. I wish there’d been more between us. I wish something as stupidly simple as who I love hadn’t been a problem. I waited until my Grandma died to come out at 29. Homosexuals were denounced from the pulpit at her funeral. I never gave Grandpa the chance to lecture me about it. I waited until my Father didn’t know where I lived. I lost my godparents, my cousins, my childhood friends… my conservative little world burned down around my ears for me to survive, and while I’ve rebuilt as best I can my heart is still broken and deeply scarred.

I’ll miss Grandpa. I’ve been missing him for years. These people I love from far away, their lives don’t stop. They get sick, they age, they die. I built my life in the ashes of my childhood. There’s wastelands of pain between.

We sat by him together tonight, telling good stories, laughing at old memories. It was fitting, heartbreaking, dignified.

It’s 2am. I’ve crept into bed next to Poppy and Rose. I have the memory of my hand laid lightly on his still chest. I’ve brought the fourth murderbot ebook for company. The house is dark and quiet. I’m full to the brim with sadness. His life has ended, he is now remembered in stories. I wish there was a better ending. I wish love was easier for people.