Rose is Home

Rose has made it out of the hospital! They are getting daily visits from nurses and doctors and have so many appointments back at the hospital next week we could just camp out in the carpark, but they are home. We are out of life and death and into recovery and adapting. There have been many tears. They are in severe pain. When it gets too bad their blood pressure goes up and their oxygen levels drop. They have a complex medication schedule with many conflicts that need close monitoring. The medications that are healing the lungs are risky for worsening the mrsa in the knee. The psych meds are risky with the antibiotics. They need crutches to walk, which the physio has suggested will be needed for the next two years. There’s a lot to adjust to.

We woke up yesterday morning before Poppy and held onto each other through a deep cry. That was really scary, and we have a lot of work ahead of us. Rose’s allergic reaction is so rare it has never been recorded in someone who is not over 65 and male. It will be written up so that other doctors are aware of that possibility, given how often it is fatal.

Shock and fatigue, dragging Poppy around to appointments and chemists and trying to gather everything we need to care for Rose and restore as much independence as possible. Depression punctuated with panic. Insomnia, irritation, grief. Vulnerability.

And every day, these precious moments we thought might not happen again. Poppy playing games with Rose and giggling madly. Shared dinner. Cuddles. I went and brought a bunch of craft things so we can sit together in the evenings. Rose has Lego kits, I’ve started a diamond painting with Poppy, and she has stickers and foil and a book of bugs. Mindless, mindful, soothing.

It’s really hard. We’re really lucky. Friends and family are helping keep us afloat with safe friendly company and connection. NDIS support will help take on more tasks that are too much for me, such as the driving to so many appointments. We snatch moments of hard won normality like lunch with friends, or a board game night. Breathe it in and find the tenderness and patience we need for each other, for recovery, for our new normal.

Letting people help

Recovery is vastly different for me to the way it is for Rose. I remember things they don’t, there’s experiences I know only the story of that they carry the memory of in their body, where they are struggling for a sense of agency I’ve been drowning under the responsibilities of home, work, parenting, and caring. At the point where it looked like Rose was going to die, I stepped back from work and our community rallied around me. Offers of support came in and I withdrew into tongue tied silence. As the communication gulf widened, I started writing here again.

I don’t understand autism or adhd. I’m still undoing all the cultural litter of misconceptions and outdated ideas about it, trying to get a clearer handle on what they are, and what they are for me. Somewhere this year they went from an exciting revelation to a horrifying reassessment of my identity, capacity, and place in the world. They call into question so many things I thought I knew about myself. And they provide another explanation for the confusing mix of things I find easy and things I find impossible.

People send me messages asking simple questions and offering supports. I sit looking at them with a head full of white noise and a stone when my tongue used to be. I recall parts of my diagnostic report that discuss communication challenges, difficulties with scheduling and making decisions. I keep trying to move my life away from these skills I lack being so fundamental and essential to my day to day existence. Crisis brings them all back to the center.

The blog is reassessed through this new lens, as a workaround for my strange communication style. Eloquence and honesty here substiting my incapacity to find the right amount and timing for honest sharing in person. People keep asking me how I am, I flounder and test out different levels of openness or bypassing the question altogether, come and answer it here instead. I’m good at communicating. I’m terrible at communicating. [“Everything anyone has ever thought is true.” Do Androids Dream of Electric Sheep, Philip K Dick]

People offer help, ask what we need. I can’t answer. I am numb. I don’t know. When I do know, the effort to message person after person looking for someone who can help, and being reassuring to all the people who can’t and feel bad is exhausting. My own feelings are exhausting. A friend tells me all their free and busy times for the next week, but I don’t know what day it is now, and I can’t track any of it. People try to plan days ahead but the situation is so unstable nothing lasts and I’m constantly weaving and unweaving plans. Another tells me the reasons they are booked up and can’t help and to me in that moment, fearing that day Rose is dying, they seem trivial and I’m incandescent with rage, holding my mouth shut against exploding my safe places and destroying my precious relationships. Unspoken, the anger numbs me further, creates distance, but right now I lack the capacity to own my feelings without venting them. Poppy needs me to not be scary, not scary sad, not scary angry, not a seething mass of skinless triggered distress, so I freeze. I sit very still. I talk in a soft and slow voice. I layer thick frost over self. Then I try to thaw slowly in safe places.

I ask a friend for help coordinating. She steps in and plays the role I’m so familiar with: the building of safety and persistent enquiry until she understands the shape of my needs. I’m clearer about what I don’t want, what’s helpful is the negative space left when we eliminate all the things that evoke visceral distress. The offers of help are rerouted out of my inbox into hers, she corrals, explains, thanks, apologises, tends the relationships with the sensitivity my terror requires and my exhaustion precludes. We add another friend to reduce the workload. They message in regularly with ridiculous caveats: would this be helpful? Don’t answer if it’s stressful right now. When you feel up to it would you mind letting me know if this plan sounds good? I hate needing this level of kid glove handling, but it works. Slowly we build the plans and reply.

People offering food I can’t eat are redirected towards buying things I can. Poppy and I are doing samefood and struggling to keep regular meals. I can’t eat, or I eat and feel sick, or I throw up. Unfamiliar food is overwhelming. The guilt of not being able to eat gifts is overwhelming. Familiar things are safer. I’m embarrassed, but at least I know now what this is. I have words for it, even if they’re terms like samefood no one outside the autism community understands.

Offers of caring for Poppy are rebuffed gently, because we now know she will regress if left with people she doesn’t know very well. 2020 has been a training ground for what helps Poppy cope when Rose is unavailable. After the hell of my earlier mistakes, I’m glad to have a clear understanding of what she needs and to be able to stick to what I know works. Friends visit to take her out then change plans and sit at the table for 3 hours playing play dough because being away from me is too much for her some days.

I accept the help and tolerate the fear of judgement, the sense of unworthiness, the survivor guilt, things being done differently to how I do them. Someone comes to help with housework, so the day before I clean the toilet, bathroom sink, and fold 7 loads of washing instead of napping like I actually needed. It’s stunningly difficult and deeply exasperating. Despite my chronic agitation, it works. My depression lessens. There’s things to eat. Poppy is still thriving. Community folds around us, and we find workarounds for the warm boundaries and communication needed to translate the good intentions into helpful action, far beyond my capacity to do so. It takes work to transmute goodwill and effort into such elegant outcomes.

I’m reminded how essential feeling safe is to accepting help, something I know intimately in caring and in my disability support work, but struggle to find for myself. Many hands hold the pain and it becomes bearable. Many hands hold the tasks and my own inadequacy eases, the connections are strong while my capacity is broken and starting to heal. This is the heart of the work I’ve been doing, and having such an intense experience of needing support myself is both humbling and helpful. When I’m trying to create resources for someone who is freezing, unable to articulate their needs, afraid, guilty, lost: we start with safety and connection. We build everything from relationship. I couldn’t do it if I hadn’t experienced it.

Thankyou.

Recovery

Rose continues to improve, much more gradually than expected with fun mini breathing and pain crises that trigger a flurry of reassessments and new tests and visits from ICU. Back on the ward and into the chaos of constant plan changes; one morning they are suddenly told they are fasting again for the next knee surgery, then taken off fasting and told they don’t need one, rinse, wash, repeat. The surgery is simultaneously urgent, not urgent, and unnecessary. The rollercoaster of emotions runs the gamut from terror to profound relief, frustration, exhaustion, rage. New tests find no new horror, just very injured lungs taking a slow path to recovery.

Doctors loom in the doorway telling us nothing is wrong, something new is wrong, the lungs are permanently damaged, the lungs are healing well. Veins collapse, tests intrude, a machine positioned behind the right ear screams persistently. A stranger comes into the room looking for green containers. A disgruntled nurse dismisses breathing stress as panic, until someone more senior applies the machines that show it’s not. But the most devaluing ideas have the greatest hold so for hours afterwards, Rose insists it’s only panic and won’t apply oxygen. They’re told to never get pneumonia, as if getting pneumonia is a poor personal life choice or a moral capacity they have control over. The future is rosy. The future is bleak and full of chronic illness. The future is unknown. The doctor that was coming can’t be found. They are always around the corner but never quite here. You’re not allowed off the ward, off the bed. You must get up, must exercise the knee, mustn’t let more deconditioning occur. Panting, breathless, sleepless. There were donuts in the cafeteria, but no one else can find them. Life is freefall in limbo. Morphine eases the pain so sweetly it brings it’s own terror of addiction, something within fights the peace.

Stop crying, says a technician entirely without feeling, I can’t get clear images when you’re crying. Sobbing is no longer considered withdrawal of consent. I’m sorry today is hard, is there anything else we can do for you? asks the soliticous nurse standing carefully two feet away from the trauma zone of a body that is no longer covered by the dignity norms of regular life outside of a hospital. The only nurse on the ward to use Rose’s real name and pronouns.

The shampoo smells like hospital. The hand wash smells like blood. The moisturiser smells like pain. The deodorant smells like unwashed hair. The food smells like dying. The massage oils smell like shitting the bed.

The hours folds into days, tesselate into years. Life continues out of reach beyond the boundaries of the hospital walls, weather is a private joke shared among the guests. The mind becomes primal, some collapse into despair, others like Rose spin into caged animals desperate to fight or flee. Friends and loved ones reach out hands to soothe, but where we see safety Rose sees the covid patient parked next to them in the overcrowded corridor, the stressed and frightened nurse, the medication drip poisoning them.

We have all walked into a dark place, but not the same place. We don’t share the same views or yearn for the same paths. For me, hospital is becoming a normal part of life, we weave it in as best we can. Picnics, lego, Poppy, card games. We come and go and learn the paths and flows and what days the parking is easiest and which wards are most peaceful and start to know the staff by name, share updates in line at the cafe. It’s horrifying but banal compared with the morgue.

For Rose the hospital is punishment for failing health, they must earn their way out through a gauntlet of requirements: less oxygen, better bloods, less pain relief. They rush the process and trip. Life goes on without them. Someone feeds the cats. They bleed out of patience and gratitude. There’s no place to take terror or rage. Peace is unstitched by confusion, the stuffing comes out, floats free, dissolves. Within the quicksand of unknown outcomes, unstable condition, multiple teams, and constantly changing plans, they cannot help but struggle, try to find the surface where they have some kind of power and plans can be made. So here we are.

Rose is Recovering

Not bacterial pneumonia after all, a rare and severe allergic reaction that filled their lungs with pus and nearly killed them. They are still in ICU but their lungs are getting stronger every day. The darkness of losing them starts to ease back to a terrifying memory. Doctors argue about the best timing for the next surgery. We talk cautiously about a holiday. We pencil in the tomorrow’s plans and roll with the changes. Startle at every new symptom. Look at our tired family and friends through eyes full of gratitude.

Poppy has been buffered from a lot of the intensity of the last week, but she’s still aware of changes and loss. She had a meltdown yesterday and I shut myself down so I didn’t meltdown with her and could be patient and firm. Then found myself slipping into the horrific depression that’s been biting at me and my heart broke.

A few days ago my whole future, Poppy’s life, and all the memories of me and knowledge of me that only Rose has nearly fell into the dark and I’d have given anything to just have them survive. How the indescribable relief of their life can exist alongside such bleak emptiness I can’t fathom. It’s not the screaming blackness of grief, it’s a greylands of disconnection. It felt like something else fell out of my world instead. Poppy left trying to connect with an empty parent. Me trying to find a sense of self and hope in my own emptiness. Undo that shutdown and coax feeling back. Talk soothingly to myself. Try to make sense of the triggers. Sit near people I love and find a sense of connection. Pieces of myself like tiny lights in the dark, winking on and off in tiny constellations. Everything fragmented.

I want nothing more in the world than to bring Rose home and share a life, yet living that life is so confusing. I can sit in the hospital and read and rub feet, I am familiar with that role. Here in exactly the life I want so much for them. I have to work hard to anchor myself to the moment and not get lost. These are good people around me. A morning pushing Poppy on the swings is something to treasure. There’s a lightness of heart I don’t have, numbness layered over terror and rage. I feel unseen and I don’t know how to make myself visible or if that’s even a good idea. I feel heartbroken by life. I just want my people alive, I’ll deal either else we have to. This is a truth.

I want a good life for us, and I’m not sure what that is, or how to do it. Also a truth. I’ve worked so hard to get here, with a home, family and work, with a loving community, and yet. I’m so exhausted and so lost from myself. How can it be so hard to live the life I’m so desperate to protect? Is that autism or just exhaustion? How can I feel like this when the news is actually, incredibly, unfathomably good? I want to go back to yesterday when I was lit with energy, indescribable relief.

I eased myself back into existence, soothing the disconnection. Shutting down my feelings to parent has to be a temporary thing, but I seem to get stuck there. I keep reaching out. I find moments to cry.

I just want Rose home and to hold on and be held onto. Nothing makes sense in my head. I can’t do this on my own.

Rose is in ICU

Rose and I had been talking lately about me starting writing again. We talked about how their nickname Rose didn’t feel right since they came out as non binary and starting using they/ them pronouns earlier this year. We talked about my sense of unfinished business since Jay, and what I would need to do to feel like I could draw a line in the sand and start again. We talked about how I’m running a business now and sharing deeply personal things could have unintended effects on staff, clients and colleagues. And we discussed my love of writing and my sadness at losing the blog and feeling cut off from it.

This was not how I planned to start sharing again. I don’t have a new nickname for Rose. I don’t have resolution or answers. But I’m being asked how I am every day and I don’t have words for that I can say without screaming.

Dearest Rose is sedated and ventilated in ICU, battling MRSA ‘golden staf’ that has chronically infected their knee following a routine surgery, and since spread to their lungs in a virulent pneumonia. Four days ago they merely had a bad knee and a slight cough. It has moved extremely quickly and taken over both lungs.

I’m exhausted and distraught. I want to cry, scream, vomit, and violently attack something. I visit every day and help wash them, rub their hands and feet, read to them. Then I go out to my car and cry hysterically. Then I come home to Poppy and try to be her connected and safe person. My community are tired, 2020 has been unkind to many of us, but they are also rallying. Poppy has a small crew of people she feels safe with this time, which is buffering her. She tells me she misses Mama’s squeezy hugs and asks me when she herself will die. I feel so depleted. I was struggling with exhaustion and depression following all the other surgeries and stress this year already. It feels like my reserves are exhausted.

There’s so much noise around me. I’m still writing to Rose so they can catch up on messages when they wake. I’m so scared and so sad. Everyone wants to help and I can hardly speak. Rose’s hands and feet are chilled cold. Poppy paints herself and runs whooping with her friends under the peppercorn tree. So many people care. I go back to bed to nap. Don’t let this be my new normal, please. I have to find ways to keep breathing even when I can’t be near them. Guilt, fear, regret engulf me. Before they went under I told them it’s okay to be scared, but I want you to focus on the love. You are so loved. I’m trying to do the same. I’m so scared. There’s so much love here.

I’m hiring

Applications now closed for this round, thankyou.

Central to Northern Adelaide Disability Support Worker wanted

I’m looking for a new person to add to my team. This is a small family business: we’re tight knit, deliberately informal, non clinical, anti-corporate, and work in pairs or teams. This is a nightmare for some people and a breath of fresh air for others, so think about it.

I have some staff taking time off over Christmas and need one or two people to fill in a total of around 18 hours a week for a month or so, and hopefully continue if it’s working out well.

You need to be diversity friendly: that means comfortable with folks who are queer, neurodiverse, have brain injuries, have unusual beliefs or experiences such as hearing voices or mental illness, and trauma histories. I’m looking for folks with great skills at building rapport, who are ethical and passionate and care about the people we work with. Great communication skills are key. A sense of humor is a big plus. 🙂

Personal experience is highly valued. If you have cared for someone or have your own experiences of diversity or disability this will be highly regarded. Happy to work with your disability employment provider or make appropriate provisions if needed. Supervision and training are ongoing parts of this role. Our philosophy is that we support you so you can give your best support to those we work with.

The role is broad, usually in people’s homes or out in the community. We love ‘jack of all trade’ types. It involves domestic duties such as housework, admin, cooking meals. We support people to attend appointments, get back into hobbies, connect to new communities, navigate their relationships, find or stay in jobs and so on. Everyone on the team has their own particular strengths and skills and we are looking forward to learning about yours.

The real role is about HOW we do these things. Some people we work with have spent years hiding their mental health issues and need people who can help them out in ways that protect their dignity and respect that sometimes maybe they most need a cuppa and chat, even if we were booked in to clean that day. Others have severe paranoia and we might need to build trust over months before they feel okay to let us in their home to help. Flexibility is crucial.

You’ll need:
*a full license and access to a car
*a DECD working with people with a disability clearance
*Covid training (free, online)
*first aid training
(We can help you sort out the training if need be.)

You’re welcome to ask questions and show your great communication and rapport building skills 😉 please apply here or contact me on sarah@di.org.au 0401099174.

For those who have their resume online or via linked in or similar platform, feel welcome to throw me a link.

I feel your hearts

Driving home through the pang of loneliness, child asleep behind me and my old ideas like broken eggshells in the gutter, sharp as discarded moons

It has always been easier to find in the night, the cold beach at the edge of the world.

I feel your hearts as living clockwork, shooting stars, hopping mice dashing through freezing sand in a cold, dark bright night. In your face I find my own, we reflect each other. Your hands are full of my tears.

Somehow we hold the keys to each other’s locks. I find a little freedom for you, gasp a breath of clear air for myself. I live only in your humanity. I run my fingers through her hair, call to hear his voice from miles away, hold their daughter’s hand.

Here, alone under alien skies, look for something to bring back for us both. Grass climbs high through the garden, the wind blows through the laundry on the line. I thought once I needed to find greatness to change the world. It’s been a painful cancer to exorcise. In dreams she kisses my mouth and her lips are a black ocean, all the shipwrecks dreaming in her breast. Shedding my skin like a snake, somehow the music is still the same as it ever was.

The tides draw me far from the waking world. I see your forms in every shadowed tree, stars strung in your hair. I can’t name the song but it moves me. Blood in my mouth, spitting teeth into my palm. Fair exchange. It’s a long road but worth the walk.

Arts Inspiration and Exchange

For SA locals, you’re welcome to join me and some fellow arty folks to another Arts Inspiration and Exchange morning at 19onGreen, coming up this Saturday. If you need a little inspiration, an excuse to make time for your creativity, have a work in progress that needs some love, or just want some friendly company you’d be so welcome to join us. I have some basic supplies if you need but happy to offer advice in getting your own kit set up too. 

Tickets are only $10, you can buy them here or bring cash (correct change please!) on the day – email me to hold a spot for you. sarah@di.org.au

We had a very diverse group last time, with projects in acrylic, ink, watercolour, journaling and more. Some folks enjoyed trying new brushes, particularly my angled brush which is lovely to use. If you’d like to learn more about using an angled brush I think you’ll enjoy this video demonstration of using an angled brush to create watercolour flowers:

Introducing using an angled brush for watercolour

Angled brushes are available locally and online, I find the Princeton brand excellent without being too expensive, others like Neef. Remember to look at the type of brush and what it is intended for use with, working with water based mediums means you want very soft brushes. 

At the other end of the paint spectrum, some folks were working with very thick paint and impasto techniques. For this you want stiff brushes such as hogs hair, or even palette knives to move the paint around. Here’s an adorable little video about the meaning and history of impasto in painting – it’s usually done with acrylic or oil paints. One famous artist who loved to use the technique was Vincent Van Gogh who worked using very thick layers of paint so at times the canvas surface seems almost sculpted! 

Some folks were working on projects where they were learning how to do a graduated or variegated wash so that for example a flower petal might be pale at the tip and darker at the base. If you are still learning this, there’s many wonderful tutorials online such as this one:

Wishing you the right spaces and people to help you make time for your creativity.

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.

Free Online Art Inspiration and Exchange Class

Hullo folks, 19onGreen and I are starting a new arts group tomorrow! The first class is free and online, you can link in on Facebook here. Or get in touch with me for the zoom link to join in.

It will be low pressure and fun. Set up some art supplies to play with or a work in progress. You don’t have to share anything you don’t want to, but you’re welcome to ask questions, get feedback, and hang out with some friendly arty folks.

These sessions are diversity friendly, if you have any questions or concerns reach out to me.

The next sessions will have a small cost and be run in person at 19onGreen in Brompton.

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

Brains Trust – give me some referrals

It’s been brought to my attention that I am flailing about online in a pretty distressed and intense matter and generally freaking out a lot of folks. I’m going to totally own this one! I’m in an unprecedented (for me, I suspect it actually happens pretty often) mess, and I hadn’t got around to mentioning it yet but surprise! I’m autistic. So I’m currently freaking out most of the non autistic people and most of the autistic folks around me are getting it. I can’t do all this shit and keep all these people going and try to keep you, the general public, feeling calm and soothed and comforted and safe too. I kinda need to, because half of New South Wales currently thinks I’m having the most public psychosis ever lol (funny that when I do have actual psychoses, I am public about them!), all the bastards who are blocking what Jay needs are flinging some mud, and I’m generally careening around doing my best to juggle 1,400 things while on fire. So my capacity to hide that I’m on fire is a bit shall we say, reduced.

Sorry about that – deal with it.

Feedback about how to handle this more effectively welcomed. 🙂 Feedback that amounts to “have you tried being less autistic?” not so much.

Moving on!

Help me with:

I need a GP or physician with experience with complex disability and spasticity. Anywhere in Australia. Frankly I’ll take anywhere in the world. We need specialist competent guidance please and we can link you in with tech. If Jay doesn’t qualify for telehealth with you, we will cover the cost through business/donations. Please get in touch with me asap with your qualifications and availability.

I need someone who can edit my youtube channel, I am using videos to communicate with my team and having trouble loading longer ones. The obvious option is to stop waffling so much but that’s never been my strong suite. Paid, obviously.

I need the NDIS medical clearance for accessing a hospital guidelines. What exactly do my staff need to do to be cleared?

I need a way to get Jay tested for Covid without moving them from their bed. Thoughts?

I have stressed, vulnerable people in shutdown because people keep phoning them. Can someone help me arrange new phones and sim cards with new numbers so they can turn the old ones to silent and address calls as they can. They can’t do this now because this family is trying to stay connected to each other. We need to split up the lines of personal safe communication from the lines of more public and stressful communication. I really like amaysim – can they help? They are both used to iphones. Will pay, obviously, from donations!

I need advocates. Autism, disability, mental health, queer, whatever. Throw them at me. I can’t do this alone, but we can do this together.

Get in touch with me.

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

Help me save Jay

Australia is utterly failing the care of people with disabilities in the face of COVID-19. I have been working around the clock this last two weeks to try and save someone’s life. Right now we are a small team of family and support workers and we are all exhausted.

Who is Jay?

‘Jay’, the person who is likely to die within the next couple of weeks unless we can turn things around radically, is a fabulous, trans non-binary, autistic, non verbal wheelchair user with two wonderful partners who are also in severe crisis – one bedbound in an interstate hospital due to severe injuries that occurred while trying to help Jay mobilise without support, the other overseas and suffering chronic pain and crisis. Both are Jay’s supplementary decision makers and both have limited capacity to fulfill that key role without our support.

Catastrophic System Failure

If you know anything about being trans you know what kind of medical care Jay has been getting. If you know anything about being a wheelchair user you know what kind of access to services has been going on – they can’t even access most of their own home. If you know anything about severe allergies you know how easy we’re finding it to feed them and keep them clean and safe. If you know anything about severe mental illness related to trauma, you know just how this hell is impacting them. If you know anything about being non verbal you know just how well most people are understanding Jay’s needs, capacities, and limitations, and the absolute torture it is to be constantly so unheard, overruled, ignored, and humiliated.

Being part of this families life for a mere 2 weeks has been the biggest wake up call for me about the state of disability rights in Australia. We are FAILING, we are being FAILED.

What are we doing?

We are trying to keep Jay alive in impossible circumstances. The little team we have is full of the most incredible people I have ever had the privilege to spend time with, and we are all keeping each other going with so much passion and integrity it frankly makes me cry with relief.

But the problems are too big,
too entrenched, too systemic, and we are too few.
We need a bigger team backing us up.

I know we’re in all crisis with the damn virus. I know everyone is struggling in some way. But many hands make light work. If all you can do is share this post or send some love, I can’t tell you how much difference that will make. We can’t be alone in this anymore, please.

If I can’t save Jay’s life, I am damn well making sure they don’t die alone. They are clean, safe, cared for with respect, have access to their family, and can rest in the certain knowledge that I will be helping their partners pursue every single person and system who has so catastrophically failed them through every legal channel open to them.

It’s not just Jay at risk

Do you know how many disabled people are going to die because of COVID-19? How many are already being refused medical care on the basis they are too complex, too unlikely to recover, and that their lives are not worth living anyway? Did you hear about the Spanish residential home in that was discovered by the army with all the residents dead, abandoned by the staff? It’s started here in Australia. People with disabilities are being abandoned. I don’t know if we can save them all. I don’t even know if we can save Jay. But I can tell you now, those Spanish residents likely died alone in the kind of terror, agony, and despair that is unimaginable to the rest of us. If Jay dies they will not go that way. They will die loved. They will die clean. They will die with their beautiful assistance dog cuddled next to them. With a tender hand whenever it is needed. With a voice in their ear telling them we are here. We are watching. We see you. We bear witness. You will be remembered, always. Join me.

How to Stand with Jay

Being different in this world can be such a source of strength and sorrow. There’s probably never been a harder time for most of us than right now. Who do you know with a disability or diversity? Reach out. Check in. Even if we can’t save them all we can tally the dead. No one dies alone.

Never the Spanish Residential Home again.
Not here. Never again.
Help me make this happen!

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.

Dealing with Trauma during a Pandemic

Hey folks, I know many of us with trauma are having a rough time at the moment too. Some of us are not safe in our homes, are facing increased risk of harm from people close to us, or are struggling terribly with awful triggers such as feeling trapped, abandoned, and not having enough resources to survive. Shops don’t feel safe anymore, many of us are losing access to essential supports and are finding our brains are blowing up under the strain.

I’m very busy at the moment supporting my family and clients, but some of my beautiful contacts have been swiftly responding to create free resources for people.

A friend of mine, Jade, is running beautiful resources such as reading kids books online particularly for little’s and kids in multiple systems – check out her work here. Jade has been co-admin of the Dissociative Initiative facebook discussion group for many years, she’s incredibly thoughtful and compassionate. She wrote a huge blog and has published a range of stunning books on trauma, multiplicity, and recovery.

Another friend of mine, Raven, is part of a huge free online conference for survivors. It is accessible from anywhere, and takes place between 23rd-27th of March. Raven is well known for her amazing Puppetry (R)Evolution using creative techniques and hand made puppets to discuss issues such as child sexual exploitation. Her 25-minute video is about using creativity and activism in healing on the 26th March, and I’ve been assured it will include puppets. Here’s the schedule and list of speakers with their topics: http://walkingwithoutskin.com/rape-and-resilience-summit-speakers .

I’m hearing a huge surge in self harm, suicidality, eating disorders, and PTSD symptoms. Anxiety and depression are high, right when everyone around us is telling us to not panic and go out and do a lot of things. Executive function skills are in short supply and bad memories are looming large.

Some of us know that if there are shortages, we’re not on the list of people who will be prioritised. That alone is a kind of social shame and rejection that can send people down a dark spiral. It’s hard to put into words, but we all need to feel like our lives have meaning and purpose, that we’re not just here to consume, and that we’re not expendable.

If this is you, or someone you care about – hold on. If the old stories have kicked back in and death and self destruction feel like valid – or the only – reasonable response to such widespread terror and shortages, hold onto the knowledge that we need you. If the ‘broken people’ trauma narrative has you feeling that you’re not destined or worthy of survival, if the idea of taking up essential resources that someone else might have to go without makes you want to run rather than fight for a place in the world, if it all feels too hard to hold on while the planet tips into darkness anyway…

I’m so sorry. I’m so sorry for what you are going through, and for the people who don’t understand. I’m so sorry that at the point where you want to stand up and shine brightest you’re falling apart. I know what it is to feel tuned to the agony of the world, to feel the death of every person, every creature, in your own skin like a million needles. I know what it is to be seduced by the idea of scapegoating yourself, that perhaps the world would be a better place without you in it. That perhaps someone more worthy would have a meal or medicine. That perhaps you could take with you all the darkness and anguish and dive over the edge of the world with it clutched to your heart and vomiting from your mouth and dripping down the inside of your legs and leave behind you a brighter and gentler dawn.

These stories are like parasites that eat us alive and turn our minds against ourselves. I say to you – what kind of world do we want? Because if you want a world that is a little kinder to the so-called broken people, we need you in it. If you want a world that is loving to those in pain, we need you to bear the pain and find the love. You cannot make any of it better or reduce the suffering even one mite by tearing another hole in the fabric of the universe on your way out of it. Stay here. Hold it with us. Mourn it with us. Love it, with us. Stay.

Pandemic Resources for supporting People at Risk

Formal supporter and informal/family carers alike are all facing new challenges at the moment with the pandemic. If you’re anything like me you’ve been scrambling to get in front of the situation, make sure basic needs are being met, and take care of yourself at the time. It’s a hectic time! Here’s a few resources I’ve created or come across which may help speed up your capacity to adapt, predict, and head off potential issues and risks.

Pandemic Plans

If you’re a support coordinator or social worker you may need a formal written safety plan for your most at risk clients/participants. Larger organisations are using overall plans, which is fine, but if you can doing personalised plans for at least the high risk folks – ideally in consultation with them – is good practice. It tailors the plans to the person and is an invaluable handover tool if you become unwell and need to shift your caseload to someone else.

Informal family and friend carers, a written plan may seem like overkill, but being able to share it with others does have value – assuming anyone else in your formal or informal networks has the same perceptions of risk and ideas about safety as you and the person with the disability (PWD) is a common point where things start to unravel. Fewer assumptions, more communication!

There are a few examples being kindly shared by people, so if you don’t have a public health background you don’t have to start from scratch. This is mine and you’re welcome to borrow, use, modify any aspect of it provided you don’t on-sell it. 🙂 Pandemic Safety Plan.

Karina and Co have generously made their Pandemic Safety Plan public too.

The Growing Space have also been agile responders to the crisis and have provided some invaluable free resources such as this fabulous Pandemic Checklist.

Free webinars

The Growing Space have also teamed up with Disability Services Consulting (DSC) and are offering a free webinar about responding to the challenges of COVID-19 for participants, families and PWD.

They are also running a free webinar for Support Coordinators.

DSC are offering this training on preventing infection.

Resources

DSC have their own fabulous list of COVID-19 resources for people with a disability including general and NDIS specific information.

I hope that’s helpful. Take care out there everyone. If you need some more specific advice or help reach out to me or the folks I’ve linked here, I expect the webinars in particular will be excellent.