Disability Support Workers, Autism and Self Care

/ Sarah K Reece / 1 Comment

Speaking as an autistic person, the parent of autistic children, and the organiser of supports for autistic folks, it is desperately important not to assume anything when it comes to self-care. Some autistic people have no issues in this area, but many of us have struggles! Self-care gets used to mean a few different things such as activities of daily life which are the things we need to do regularly to look after our bodies like hygiene and grooming, and mental/emotional self-care which are things we need to do to look after our mental and emotional wellbeing such as things we enjoy and find meaningful. Autistic folks can have struggles with both, in this instance I’m going to discuss physical self-care.

Culturally we are accustomed to children needing monitoring and support for self-care, but autistic children will often need more of both, and tailored to their particular challenges. We are less familiar with able-bodied adults of normal or high IQ needing assistance with self-care. This means we may fail to ask simple questions, we may miss signs of problems, and we may accidentally add to shame and secrecy.

Examples of Self Care Challenges

I have spent a lot of time in emergency departments with an autistic person in crisis, with doctors doing all kinds of tests before someone realises the primary issue is one of self-care, or that a lack of self-care is exacerbating and complicating the issues. We can have a lot of difficulty with activities of daily life such as

  • Drinking too much or too little water
  • Restricted eating, compulsive eating
  • Forgetting to or struggling to shower or bathe
  • Difficulty brushing teeth
  • Difficulty managing head, body, or facial hair
  • Difficulty trimming nails
  • Difficulty managing splinters, wound care
  • Difficulty managing periods
  • Not taking medications correctly
  • Not enough/too much/other sleep disorders
  • Dressing appropriately for the weather, managing dirty clothes
  • Managing continence
  • Managing pets and animals in our homes
  • Managing domestic tasks

Why are there difficulties?

These challenges can arise for many reasons. Autism can come with intense sensory attractions and avoidance. Some autistic people have a hypersensitive awareness of some body functions, and little or no awareness of others. Many can have difficulty with executive functioning which can make remembering and doing self-care tasks difficult. Sometimes people have never been taught self-care skills. Sometimes people have grown up in disrupted environments such as poverty, foster care, or homelessness where self-care was not modelled and they’ve normalised the lack. Often these issues become more pronounced when self-care isn’t adequate – the executive functioning is worse when people forget to eat, the mouth sensory aversions are even more intense when someone hasn’t brushed their teeth or seen a dentist in 10 years.

What can the outcomes be?

All of these can cause trouble – for example, one person may forget to drink because they never ‘feel’ thirsty. Another may drink far too much because the sensation of thirst is intensely unpleasant to them. Self-care challenges can have serious consequences for people, and in some cases can be life-threatening. It is absolutely possible even for educated, well-off, well-presented adults to have severe self-care challenges that they do not disclose. This is an interesting case study of a late-diagnosed 18 year old where self-care difficulties caused serious medical complications.

The consequences can also be more subtle and hard to see – for example someone who stops leaving the house because they are worried they may smell. People lose out on social and work opportunities and can become painfully restricted in their lives due to these challenges.

The role of shame and confusion

Many people carry intense shame and confusion about why they are struggling with these things. This is often even more severe for those who are diagnosed late and don’t have a framework to understand that their challenges are part of a disability, not a personality flaw. For example, someone may have perfectly physically functional capacity for continence, but have frequent toilet accidents because when they notice they need to use the bathroom they are unable to interrupt what they are doing and give that task a higher priority. They will continue to do the task in front of them – perhaps with overwhelming panic and dread, knowing they are not going to be finished in time to get to the bathroom but stuck and unable to switch tasks. If this person has never had this explained to them, the shame can be intense.

It’s also common to have many factors in play – for this example maybe we add in an experience of sexual trauma that adds shame fear and confusion to all things related to gentials, and a sensory aversion to the smell of urine making bathrooms difficult to spend time in, and a sensory aversion to wet hands making the task of toileting hard to manage.

Secrecy and putting it out of mind is a common way of coping with these issues. Unless directly questioned, many autistic folks with self-care challenges simply don’t volunteer the information, and in some cases are not aware that other struggles are linked to them and may simply endure or spend many hours and a lot of money trying to find causes for illnesses that are actually things like dehydration.

What does good support look like?

Sometimes disability support workers are the ones who notice a problem. We might be the first people who are spending enough time with a person to realise that they never drink, and that they often overdress in hot weather and have frequent headaches, nosebleeds, and fainting episodes. We might be the first people let in on the scary secret. We are sometimes the ones who help make sure the right people are linked into the information – I’ve sat in on more than one Functional Capacity Assessment and had someone breeze right past all their self-care struggles and forget to pass on information like their clinical malnutrition. I’ve also sat through assessments by people with no training in neurodivergence who spent the entire time focusing on the clients physical capacity and completely ignoring these hidden challenges. This is unfortunately common in the medical profession and adds a lot to shame and misery.

We can help by reducing shame and being safe to hold such personal information about someone. When we are supportive, we go at the person’s pace. If they are not ready to tell people like their GP, we build that trust. We accept that this is hard, and that being open about it is in some ways even harder. Sometimes people are very accurate in their fears about how the information would be received, and we can help them find safer people to ask for help.

We can normalise the challenges and keep them linked to the disability, not the person’s character. Disabilities can be tough to manage. Peers and peer experiences can somtimes help a lot. Anything we can do to help someone feel less alone and less freakish can be useful.

We can help externalise the challenges. Drawing a distinction between the person as a problem, and the person dealing with a problem. When we team up to deal with a problem, it’s less personal. We can recruit other safe people for the team too – Occupational Therapists or Speech Therapists with experience in Autism can be very helpful in understanding why some of these are so hard and helping figure out work-arounds.

  • We can help with prompting when the issues are around remembering and initiating tasks.
  • We can body double when the issues are feeling overwhelmed and not being able to focus
  • We can take notes in useful appointments and help people remember the strategies suggested
  • We can help make aversive tasks less difficult or stressful by telling jokes, playing music, planning nice things afterwards, breaking them down into little steps
  • We can remind people to tackle hard things slowly, to take breaks, to be kind to themselves
  • We can be companionable such as sharing lunch time together for someone who struggles to eat
  • We can check in to see how things are going in an unintrusive way
  • We can shut up and back off when the person is feeling swamped
  • We can plan ahead for the next time things are hard – for example if someone has struggles with self harm and wound care, we can help them find a good caring local nurse, make sure their first aid kit is well equipped, and normalise asking casually and privately about self harm during shifts to help reduce severe infections and scarring.
  • We can educate and remind people eg. I wonder if you feel awful because you’ve forgotten your meds?
  • We can accept rigid thinking, validate feelings, and help people care for themselves without directly arguing with them eg. I know it’s very annoying the doctor insists you eat something with this medication, do you feel more like cheese and crackers or yogurt?

Really good support in these areas is built on a solid relationship. The person with the challenges needs to feel somewhat safe and respected. Sometimes they will not see their challenge as a problem which can mean that for them they have to put up with people around them ‘making a fuss about nothing’. This can be managed where there’s some trust. I support someone who has no sense of food safety at all, but accepts that I ‘fuss’ about things like chicken that’s been left on the bench overnight. To them it’s a needless annoying trait of mine, but they value the support I provide enough to put up with my ‘foilbles’ about food safety. I accept that this is their perspective even as I ask them to ‘bear with me’ while I replace bacteria laden chicken with a fresh meal.

People are more likely to hide, lie, or shut down and forget these issues when they don’t see a way of handling things that preserves their sense of dignity. For them, the trade-off simply isn’t worth it. They’ve already tried and failed to do any better at managing it than they are, the last thing they want is for it to have a massive social cost too. It’s often up to support people to make sure it doesn’t. A lot of health and healing comes from finding ways to bring the unspeakable out into the open in safe places, whether that is ‘psychotic voices’, disordered eating, or incontinence. When we work so closely with people in their homes, we can be a huge part of helping make at least that space one in which it is safe for them to have the disability and the challenges that they have, and to still be seen and celebrated as whole people.

Navigating Hurdles to using Disability Support Workers

/ Sarah K Reece / Leave a comment

I’ve previously written about Understanding Hurdles to using Disability Support Workers. Here’s some approaches that can be helpful when you’re dealing with hurdles like those. Not every agency or organisation or support worker will be on board with all of these options, they all run in their way and have their own limitations – however even if they can’t help, they should never shame you for what you need or would find helpful. You have every right to ask, to advocate, and to try different approaches and discard what doesn’t work for you. Remember it’s never just going to be you that finds this hard, or that needs that approach. When we ask, we make it a little more normal and a little easier for everyone else too.

Start with the Least Stressful Task

Pick the easiest task. You might have complex support needs and circumstances and be totally overwhelmed, so maybe this isn’t the week for someone to come and assist you in showering, or taking notes during your psychiatrist appt. Sometimes it’s easier to get started with the simplest task. That might be someone to wash the dishes a couple of times a week. It might be driving you to the physio on Thursdays. It can seem stupid to book this in when there’s so much going on and so many unmet needs but just getting a thing handled for you is an excellent place to start and can get past the block and freeze to having any support at all.

Avoid Relationships

Don’t set up a Support Worker, set up someone who functions as a taxi driver or cleaner. If the relationship with a stranger is part of the stress for you, start with an impersonal service. You can request a Support Worker or cleaner do tasks while you’re not even in the room or house. You can ask to be driven to an appt and home and explain when you book that you’re stressed by conversation and to please not engage with you. Deal with having them around before you have to adjust to having some kind of relationship. Sometimes this can make it manageable.

Just work on the Relationship

Alternatively, forget the tasks for a bit. Just do something you enjoy and get to know this other person. Play a board game. Take a walk. Go for a swim. Watch a movie and discuss. Do downtime not stressful stuff and build a connection.

Delegate

Get someone else to hire and supervise. If you have a trusted friend or family member, they can help get the ball rolling for you.

Do a Graded Increase of Supports

Start small. You might be funded for 30 hours a week but the thought of that is terrifying even though you really need it. Maybe you need to start with 2 hours with a Support Worker. Organisations may try and jump you straight to a full schedule of supports and for some people this is completely the wrong approach. Once that 2 hours is feeling manageable, perhaps in the third or fourth week, you might want to extend it to 4 hours, or keep it at 2 but get them in twice a week. A soft, flexible start like this can be essential to having the support be helpful instead of feeling like a crisis to manage. Not every agency or worker will allow you or be able to do this, but some definitely will.

Get a Lead Support Worker

Start with an experienced Support Worker, and as they learn about you and your needs, get them to onboard and train your team. They can be the key or lead Support Worker and you can use them to help with communication, relationship, training, and rostering. They can function as your executive assistant and the team leader.

Keep them Outside

If having people in your house is terrifying, don’t let them in. I have worked with many people who have needed all supports to be out of the home at first. You can do online support where someone calls or video calls and helps with your admin. You can meet in a public location like a library or park. You can sit on your porch together. You can get in a Support Worker to help you in the garden and do that together every week for as long as it takes to feel safe to let them in your house. You can have a friend or family member with you every shift at first. You do not have to do the ‘typical’ support stuff if that is just beyond you. We are here to actually help and sometimes that means being really flexible, really gentle, and moving at this very slowly.

Just be aware Support Workers are people who do need access to shelter, water, and toilets so you may need to make sure there’s other options if they can’t use your home.

Alternative communication

The entire disability sector is oddly oblivious to the need for a variety of options for communication. Many people are deeply stressed by phone calls and prefer text messages. Or find emails impossible and need mail. Or do best on video calls. If you find discord easy you are absolutely allowed to ask to communicate with your providers and Support Workers there. Some organisations lack the flexibility to engage in different ways, but many smaller ones or independents will absolutely understand this need and it can make so much difference to managing a roster.

Explore your Overwhelm

If this is one of the big issues for you it might help to explore and understand it some more, perhaps with a therapist or friend. Good Support Workers will absolutely be able to help with this, but there’s many things than can drive overwhelm and some of them will actually get worse if we approach our Support Worker through their lens and recruit them into the same factors. Some more thoughts here: Finding Ways out of Burnout and Overwhelm.

Guides and checklists and labels

If you set up the spaces in your home you are using Support Workers so they can easily tell what is needed, you will have less irritating variation, and less need to train them. This is a great option if you have a larger team, a lot of staff turn over, or a horror of training staff. If this makes you feel like you’re living in a hospital or facility then absolutely don’t. However many multiple people households, especially with kids or multiple people with disabilities, find having labels and clear systems can make a massive difference to the smooth running of the home. The kitchen is an excellent place for labels on draws, photographs of what content should look like, labelled food storage, and simple check lists of what resetting the kitchen looks like. In my home I tell staff that if they can’t work out where something goes, leave it on the bench and I’ll go through them at the end of the shift – I vastly prefer this to losing items that have been hopefully stuffed into random cupboards!

Never have just one support worker

This is a tough one. When getting started has been hard and you finally have a good one it’s so tempting to stop there. A basic rule of thumb is that every participant needs more than one Support Worker, and every Support Worker needs more than one participant. The degree of vulnerability if you only have one person is so high and it runs both ways. Support Workers need to know they can take a sick day without your world falling apart. You need to know a Support Worker can leave without the sky falling. Losing a good Support Worker always sucks, I hate it. But when you have at least two on your team you can limp along while you recruit. If you only found one good Support Worker in the world, it can be an impossible ask to look for another one, and to go from someone who has known you for months or years and is now highly attuned to you, back to the start with someone who has no idea about your story, your capacity, your needs, can be more than people can deal with. Don’t stop with one. Good, experienced Support Workers know this and will encourage and help you not to stop with them.

If you’ve struggled to get going with Support Workers and have found something else that has helped you, please do comment or message me and let me know. There’s so many folks out there feeling stuck. I have my own deeply personal experiences of how hard it can be to let people help, how essential it is to feel safe..

I hope this gives you permission to go off the beaten track if you need to. Hurdles are common and there’s many ways around them. Good providers will create an alliance with you to help navigate them, and there’s many, many great Support Workers out there who are keen to help in the ways that will work best for you. These ideas can be put into practice with any providers or independent Support Workers, and you’re certainly welcome to get in touch with me and my team if we seem like a good fit. Best wishes and take heart. You’re not alone, and for most of us it gets easier.

Understanding Hurdles to using Disability Support Workers

/ Sarah K Reece / Leave a comment

I have been a Disability Support Worker since 2019 and began employing other Disability Support Workers to help ensure my clients actually survived when the pandemic kicked off in 2020. I also run the NDIS plans for my family members which means hiring Disability Support Workers to come into our home, so I get a fabulously rounded perspective on this one. I can tell you that good Support Workers change lives. The relief of competent support is profound, especially when things have been bad for years. It’s like the storms don’t go away but you finally have a roof on your house to keep out the weather. Support workers can also drive me batty, they are exhausting, daft, unreliable, and uncomfortable as hell. They can also be an intensely vulnerable, isolated, and dehumanised workforce. There’s a lot of perspectives to consider.

One I want to talk about today is not shared very often. I hate hiring Support Workers for my family. It seems so strange for those of us with NDIS funding – we so need the help, we’re so relieved to finally have a plan, there’s all the weird survivor guilt of having access to a resource when many are denied and in need, and then there’s the gap between what we need and what have to do to get it. This is a small gap for some folks. They call a couple of agencies, get onboarded, and away you go.

For me and many like my family, it’s just hard work, and this work is largely invisible and rarely discussed. I don’t like the uncertainty, I don’t like the getting to know each other part, and I don’t like the energy it takes to deal with people coming into our space and not yet knowing how to do things our way. It’s stressful. I don’t like having to look around and interview people. I hate onboarding a new agency. I hate having bad experiences, being patronized, lied to, bullied, manipulated, harassed, and let down. It takes spoons and bandwidth to find, onboard, and train staff. It takes savvy, patience, and time. It takes optimism, hope, and the belief that our needs are legitimate and can be supported. It takes getting over the intense embarrassment of asking/letting someone else do a stack of tasks that I feel are my responsibility. It takes letting people see us, our limits, our mess, our struggles, our bad days, me in a dressing gown at 6.30am getting kids ready for school, a doom box of paperwork with the important document for today’s medical appt lost in it somewhere, getting a call to say someone’s had a meltdown and the Support Worker doesn’t know what to do. Things that make me feel vulnerable. Things that make me feel like a failure. Things I don’t want seen that are now painfully visible and picked apart in functional capacity assessments and shift notes.

So if this has been hard for you too, take heart. You are not crazy, or ungrateful, or alone in this. There are many, many things that can make getting started with Support Workers difficult, and there are many things people have found can make it easier. People can and do navigate these hurdles and wind up with great support. Being able to understand and talk about the hurdles in the first place can help.

I’ve seen people who have never had a Support Worker, folks who had one amazing one they lost at some point, and folks so fed up with the workers they’ve tried they’ve just run out. It’s easy to get stuck. Many of us find the messy ‘first draft’ process just exhausting. We want to jump straight ahead to the part where things are running smoothly. The workers know us, they are attuned, they are responsive, and they know where the tea towels live. Dealing with the process it takes to get there… that’s another matter. The good part of all of this, the part that’s worth hanging on is this. We used to get block funding delivered to organisations who decided all of this for us. What support we needed, which workers they hired, and who was eligible. As much as I hate the workload, I love the freedom and flexibility. I get to hire the people I want, to do the tasks I actually need help with, at the times and in the ways that suit me best. I have the choice and I have the control. The hurdles come with that, but the freedom is pretty appealing when you remember how the system used to work.

Diversity Hurdles

Diversity is a common hurdle for folks. The main training for Support Workers is a Cert 3 in individual support. It’s generally focused on stable disabilities that don’t change a great deal over time such as blindness or an amputation, and on providing personal care such as assistance with showering, feeding, continence and so on. If you are dealing with a disability that fluctuates radically, has an unpredictable course, and/or includes mental health challenges then you’re a little out of the wheelhouse of a lot of the workforce. If you’re trans, or polyamorous, or CALD, or live in a remote area, or immunocompromised, or nonverbal, you’re dealing with all the extra issues of ignorance, confusion, stigma, or just unsuitable support from worker who don’t speak your language or understand your experiences.

Organisational Hurdle

If your disability impacts your organisational capacity this can also be a huge hurdle. Researching, interviewing, training, and managing staff can seem like a ridiculous extra burden if you’re the kind of person who forgets to eat without reminders.

Communication Hurdles

If your disability impacts your communication or relationship capacities you can find yourself swamped by the bizarreness of a system set up for people with disabilities that presumes you can communicate, negotiate, provide feedback, and regulate a bunch of relationships.

Poverty and Housing Stress Hurdles

Poverty is not spoken about enough in this area, but the power dynamics and relationship differences between support for those in severe poverty and those in good circumstances is profound. NDIS is not intended to relieve poverty or replace any other services which means when other services fail, we can have appalling situations such as one of my clients being funded for daily support but being homeless and his phone breaking – how can we even find him when he’s sleeping rough in the park? If you’re struggling on a low income or falling through gaps in other services, Support Workers and all the other NDIS resources can be so much harder to implement.

Trauma and Anxiety Hurdles

Trauma is a common and significant challenge in this space. Many of us have had abusive experiences in personal relationships, medical settings, and with providers. It takes a lot of courage or desperation to let strangers into our lives and homes. I remember once I was having a horrendously bad week, and a friend kindly arranged a cleaner to come to my home. I really appreciated the idea but I’d never had a cleaner visit before. I was so overwhelmed and embarrassed it caused a panic attack and I cancelled the visit – then felt awful about that and ashamed to let my friend know their kind gesture was too much.

What if getting help makes you dependent and even less functioning? What if you lose the help at the next plan review, just when you were feeling safe and secure and things were working? What if a Support Worker takes advantage of you, steals from you, manipulates you, deceives you? These fears are significant barriers for many people and can mean vastly underspent plans and high risks for people with disabilities who are not getting basic needs met.

Overwhelm Hurdle

Overwhelm is a constant, chronic, harrowing state of existence for many of us and trying to add in supports can be just more demands to feel swamped by. Inexperienced or mediocre workers need a lot of hand holding and this can be more energy than it’s worth.

Abelism Hurdle

Ableism is also a huge barrier for many of us and this goes two ways. Support Workers who don’t understand our disability can bring a lot of ableism in with them and it’s exhausting. They might look at your functioning body and say ‘you don’t need help with meals’, because they don’t know enough to recognise that your lack of hunger, anxiety about eating, severe sensory issues, and no cooking skills mean you are clinically malnourished and living on a starvation diet. You need support with planning, buying, and preparing food, and probably with reminders to eat and assistance to make it a more comfortable experience. Support Workers who don’t understand this can add to your sense of shame and invalidate your real needs in ways that leave you worse off.

We often have our own ableism that trips us up. Personally I’ve found this is often more severe for invisible disabilities, and more likely for issues that went undiagnosed or misdiagnosed for a long time. If you’ve spent years being told you’re lazy and just need to try harder, it can be mind bendingly difficult to ask a Support Worker to come and do that task for you. You shouldn’t need the help. It’s a waste of their time. It’s a waste of tax payer money. Someone else probably needs it more. It’s not that big a deal.

Specific Needs Hurdle

The more specific and inflexible your needs are, the more time you need to invest in training your support workers to do things correctly. There’s so many things that can mean our needs are very specific – because you have a life threatening allergy, a complex household with multiple disabilities, severe sensory sensitivities, a recent history of sexual assault, or OCD specificity about how your cleaning needs to be done. The general guide is: the more flexible we can be about our support the less time we need to invest in training and onboarding. The more we need things done a specific way, the more we need to educate, create checklists, have allergy paperwork on hand, and so on.

There’s nothing wrong if your needs are specific, I’m not judging. We all have them in some areas of our lives, and we are often pretty oblivious to how not intuitive they are until someone else blunders through and whilst trying hard to be helpful actually makes a mess of things. If you, like me, have a dog that must be put outside and have the laundry door closed when the last person leaves the house, you can’t assume a Support Worker will know to do that. And if you, like me, get busy and disorganised and forget about that, then you will absolutely come home to find your shoes demolished on the back lawn!

The first time someone helps you make a curry and cuts the onion into wedges when you need them minced finely so you don’t have chunks of slimy onion in your mouth when you’re eating, you will realise that what’s normal to us is not everyone else’s normal. If it’s important you’ll need to communicate it, and to do so respectfully and in an accessible way where your staff are able to remember it and get it right.

There’s many things people do to help overcome hurdle like this, and I share some ideas in this post Navigating Hurdles to using Disability Support Workers. But step one is recognising that the hurdles are real, even if you can’t easily understand or articulate them. We start by finding solidarity in our peers, finding we are not alone in our struggles, and moving away from shame and towards compassion. It is at times hard, and that’s okay. The opportunity to choose and create our own supports is truly an incredible one, and here in Australia we are the envy of the world for the freedoms offered by the NDIS. I am reminded of a line from a favourite book:

What she had begun to learn was the weight of liberty. Freedom is a heavy load, a great and strange burden for the spirit to undertake. It is not easy. It is not a gift given, but a choice made, and the choice may be a hard one

The Tombs of Atuan, Ursula K. Le Guin

Don’t give up, there is excellent, safe, inspired support out there.

Unpacking success in business: vulnerability, mistakes, and inclusion

/ Sarah K Reece / 4 Comments

Hello, lovely ones.

I have some wonderful news to share and I’ve been trying to share it for a while now. My business is finally a success.

Isn’t it funny how sharing our successes can make us feel so vulnerable? I’m very used to sharing things most of us prefer to hide. I’ve found value in it and learned how to deal with the downsides. I’m intimately
acquainted with failure and loss.

I’m less familiar and in a lot of ways less comfortable with sharing my wins. This is a big one, and right now I can finally feel it, and it’s not too terrifying to share.

20 years ago I wrote myself a goal list for my life. I wanted a lot of things, but my main ones were a job that paid well enough for me not to need Centrelink (welfare), a safe place to live, and a partner and children. They are not exceptional asks. But for someone like me they have been the work of a lifetime.

For 20 years, my work has tangled with my identity in deeply painful ways and brought a constant taste of failure to my life. I exposed myself as different before I found a safe place to stand with income, and that was risky, and it burned me. I have spent a lot of my life alone and naked in front of the crowd. And that created a community for me, it built connections I could not otherwise have created, and it humanised me in a world that saw me as other and less. It also closed so many doors, outed me early, and left me on the sidelines in a race that saw me as a dangerous liability instead of a resource to invest in. Self-employment was my remaining viable option, and it has been a brutally challenging path.

I have finally climbed my personal Everest. Work and money. I am officially broken up with that abusive relationship Centrelink. I’m financially independent.

It’s been scary to tell you. I didn’t feel successful, or safe, or like I’d made a real achievement, it just felt like a break in the storm, with more rains coming. What if shouting about it brought down an avalanche? What if I stumble and it all falls apart, and I have to crawl out of the rubble and tell you I’m back where I started? What if I fail again?

I will fail again.

I have been quiet, busy, kept my head down wrestling with it all. I have learned so much. I am now celebrating 4 years in NDIS space.

I also want to sing my achievements from the rooftops, because it looked so impossible for so long. So many people have helped me or struggled with me on this road, and I know there are so many other people like me out there wondering if it can be done.

When I started employing people I had three goals:

  • To do really good support work for our clients, something approaching the level of attuned and responsive care provided by good unpaid carers
  • To take really good care of our staff which is very rare in this industry
  • To run the business well so we all had security

I have to some extent achieved all of these, using a combination of approaches such as kaizen and co-design, values such as inclusion, and skills such as my capacity to engage in a vulnerable and authentic way with people I don’t know. Unlearning what doesn’t work and ignoring what everyone else is doing that creates the outcomes I don’t want has played just as important a role as finding the tools and approaches I need, and encouraging the values and methods to emerge from the process.

Sometimes I can feel a sense of accomplishment, but a lot of the time I’m just struggling with the things that aren’t working well yet. My fourth goal was added a couple of years in:

  • for my role to be a good fit for me

All are still in progress, and by the nature of this work always will be, but this one has come a long way. A couple of years ago I was lying face down in my driveway in meltdown over a distressing experience in this work. Most mornings I woke up hating my job. Most days I now wake up feeling reasonably good about it. There’s further to go but the profoundly unmanageable demands on me have been drastically adjusted and the fit is so much better.

Recently I have done a thing that clicked with me, that made me feel successful in a way nothing else has. I sent an email authorising paying my staff a Christmas bonus. There’s enough money in the business to pay me, and to give something to them too. I was walking on clouds for a week.

I’m autistic. I have ADHD. I have an unpleasant collection of chronic illnesses and a pain condition. I have mental health problems. I have a trauma history. I have struggled with poverty for much of my life. I have been homeless. We are plural/multiple. We are looking after a family with young children. And we are running our own business successfully enough that we no longer qualify for welfare.

None of those things went away. We are still plural. We still have ADHD. The pain and chronic illnesses have backed off and we’ve learned how to manage them well enough to have time to work – but even then I’m not working full-time. No one on my team is. Some weeks I manage about 10 hours and just keep the fires burning. I did not have to be cured of any of my disabilities to achieve this. I had to get the right support, the right advice, and to survive the shitty learning curve and all the mistakes I’ve made and the people I depend on have made.

One of my favourite quotes:

An expert is a person who has made all the mistakes that can be made in a very narrow field.

Niels Bohr

I am becoming an expert by the simple maths of running out of mistakes I can
make. And bringing with me a stack of advantages, and resources I’ve found, and playing to my considerable
strengths.

So what exactly have I achieved? I usually employ around 10 staff, most of whom are Disability Support Workers. We do something very unusual in NDIS space, which is to use a relationship-based, team approach. Most of our clients are neurodivergent and/or dealing with mental health challenges.

I now draw a regular income alongside my staff. I have taken out my first-ever loan and bought a car.

I used some of the profits to buy a caravan because we had 3 clients and 2 staff dealing with homelessness just in our second year of running. The homelessness resources here in South Australia are hideously underfunded and under-resourced. I have had staff sleeping on my couch and once had to drop a client off in the parklands with a warm jacket and a cheap phone. So I bought a caravan for emergencies and temporarily housed 4 people last year.

I have kept two highly vulnerable clients alive during the pandemic, fighting people up to the Health Minister of NSW and burning nearly every personal and professional bridge I had to do so. It worked. It was messy and exhausting but they were both at extreme risk including covid exposure and for one illness requiring ICU stays, and they both survived.

I’ve employed 39 staff total in this time, with a range of backgrounds and circumstances and many with their own disabilities. Some have been ridiculously overqualified but blocked from accessing employment due to issues like racism. I have been a step towards a bigger goal for people who just needed someone to give them a chance.

I don’t recommend starting a new business a few months before a pandemic kicks off, it’s stressful. We’ve survived a lot. Coping with $33,000 of unpaid invoices that took 9 months to resolve. Managing the theft of $23,000, changes to the award rates that looked like they would kill the business, and so many HR and SCHADS issues I’ve lost count. I have floundered as an inexperienced boss with disabilities myself and no road map on how to do that well. And yet, we’re here.

All our clients survived, some have moved on, some have stayed, many have begun to thrive, and some have had proper support during extremely difficult times in their lives. People who were trapped in isolation now have safe networks. People are getting fed good hot meals they enjoy. They are getting dental care, replying to their emails, getting their homework done, having birthday parties, passing rent inspections, getting first aid for self-harm from someone kind, decluttering their home without shame or pressure, getting the kids out to the park to play, having someone they can talk to about the voices, being able to use a clean bathroom or help to find a GP they can trust. It’s the most mundane and domestic things, and the most sublime and profound. We clean toilets. We change lives.

I’ve made plenty of mistakes, sometimes horribly publicly, and certainly sadly burned some bridges in desperation, but I’ve hung on, dusted myself off, got up and tried again.

As this team has come together the business has finally clicked over from being a hobby that pays for itself but not much more, to being a legitimate income for me. The nature of this work is that it’s in a constant state of flux. New staff, new clients, new NDIS rules and SCHADS conditions. Transitions in and out like the tide. I’m still refining the model, and there are still things I hate about it – like being constantly on call and struggling for work/life balance, but it’s easy for me to drown in everything that still needs attention. I wanted to stop for a moment and call attention to this impossible thing. I pay myself every fortnight. I pay taxes. I pay staff. We help people. We make a difference.  Some folks couldn’t find what they needed in support workers from other businesses. They are teaching us how to be better support workers and using us to bridge the gaps in their lives between their capacity and their dreams. We learn and refine each time, and something important emerges.

One of the key things I’ve learnt is that I can hire inexperienced disability support workers and train them myself, because I have those skills. But I cannot hire inexperienced administrators because I lack many of those skills and I can’t do the training. That was hard, and I struggled a great deal to depart from my preferred approach of hiring for values and then training people into the role. My disabilities drastically impact some of my administrative capacity. I can’t train people to do things I can’t do. So experienced administrative roles such as my business manager and my PA who can problem solve and experiment and function independently have been tremendous assets.

This job is all about people which means good HR is not optional, it’s the foundation. I’m on my fourth company so far. My darling wife Nightingale has provided stability and helped with tasks I’m truly bad at such as running the roster. I am time blind and have dyscalcula, which impacts my ability to get dates and times correct. No one in their right mind wants me doing scheduling. I once famously took my entire extended family to the Willunga Almond Blossom Festival 2 weeks early. I’ve needed people on my team who are better than me at essential tasks, and that’s taken a lot of time and a decent amount of luck.

My employees have added their knowledge and skills. Some have had terrible previous experiences and come in with considerable work-related trauma we’ve tried to use as antigoals to create safer policies and culture. Some have had experience in advocacy, community services, and management and they’ve been generous with that experience. I’ve gradually begun to find ways to manage some of my disabilities in this context as we’ve created a more inclusive workplace for each other.

I’m passionate about good service design. My years of experience in community services, peer work, alternative mental health, government, consulting, my training in public health, and my lived experience in disability and as a carer make me the right person to set up a business like this. I have found a place where my strengths are relevant and can make income. I have found a model where I get to provide services for some of the most marginalised people and still get paid.

I have had to sacrifice too. In the middle of a family lunch, there will be an emergency with a client rushed to hospital and I’ll be on the phone sorting it all out. I had to shut down every other wing of my business for 3 and a half years to focus on getting this running right and dealing with the pandemic. My ADHD brain found that nightmarishly hard at times. I have made almost no art and had almost no side projects. I have lived and breathed my family and this work. 6 months ago things stabilised enough to allow me the time to be able to re-open some select consulting work and that has been a joy. As much as it’s satisfying to figure something out myself and create it, it’s doubly so to have the kind of reach that means other people, organisations, or businesses can make something good too. I have honed a lot of expertise and it’s exciting to use it to support other people’s projects and watch them succeed.

Not everyone can do this. If I was still super sick this would be impossible. But many of the things that make this impossible have nothing to do with me, my disabilities, or my limitations. They are needless thoughtless exclusions that cut people like me out of the narrative of work and money and cast us away. It should never have taken me 20 years to get here, and it should not have been so hard. So much of the advice and training was worse than useless, and the intensity of trying to prove myself and prove my value as a person in this world has scarred and savaged me. This is not inspiration porn. It is not a stick to beat yourself with. This post might hurt to read, and if it does, I am so very sorry. I have cried a thousand tears. I cry with you. It isn’t fair and it shouldn’t be like this.

This may be a relief to read, for all those who have fretted quietly in the background about me. I remember being told once, there’s so much goodwill out there for you, but no one knows how to help you. I did not fit.

This may be hopeful to read. You too may not fit. Or you may be wondering if your autistic child has hope for escaping poverty if the people who apply for jobs at your business are worth taking a risk on if the dreams you have are in any way possible. If multiple/plurals can function in the world in some way or are doomed to be trapped in poverty.

Yes, we can, sometimes. This isn’t just about me, it’s about the context in which I’m doing what I do. I have had a raft of support, opportunities and strengths, alongside the pantheon of losses, impairments, and challenges. I’m still learning what’s made this finally work for me. I’m still finding words for the costs. I’m still figuring out how to stay afloat as things change. I’ll keep sharing honestly. Because all of us deserve financial security, we deserve jobs and public identities, and we deserve to be seen as part of the solution not just a social problem to be solved.

This is my story and it’s beautiful and painful. I’m sharing it because it takes courage to change the world and we are all changing the world. I have made a thing and it’s beautiful. I climbed a mountain. My feet are bloody and I have lost some toes. Failure is terrifying and necessary. Success holds its terror, it obscures and dehumanises and makes us want to keep our vulnerabilities more secret, it carries us to new heights to fall from, it is embedded with prices we didn’t realise we were paying. And it’s beautiful and powerful, the view across the horizon. Paying for Poppy’s dental surgery last year without needing to ask anyone to help. The illusion of independence and self-sufficiency, the protection from the consequences of our flaws and our soft underbelly, the place where we connect in humility that’s now covered by scales and cloth and so hidden we can’t even name the loneliness. I can afford my medications. I pay rent. I feel ashamed and survivor’s guilt for having enough in a capitalist culture that keeps the vulnerable below the poverty line to incentivise work. I wrestle with my place in a broken system when I am no longer at the bottom of it. I try to buffer the people in my care from the worst excesses of it.

Come raise a glass with me. I made a good thing. I dreamed something out of reach and have wrestled it down from the gods, eaten lightning. Come share my fire.

Journalist seeking experiences of plurality/multiplicity

/ Sarah K Reece / 1 Comment

I’ve had a chat with Alana who is looking to write an article about this topic and hoping to speak to folks with lived experience. I don’t know her personally so this isn’t an endorsement, but her values sound aligned with my own around raising awareness in a manner that humanises and holds space for the diversity of experience so I’ve offered to reach out through my networks for her. Here’s her intro:

I am writing an article on plurality and plural pride. The story will look at plurality against the backdrop of pervasive prejudice and poor understanding of dissociation, especially among mental health professionals. I also plan to discuss internal family systems, a therapeutic modality that normalises the existence of parts, to suggest shifts in on how plurality is understood. 

The story has not yet been commissioned- I am in the process of writing a proposal.

I am a journalist and registered psychologist.

I hope to speak to people who identify as plural. I am interested in how parts are experienced. I am also interested in the experience of stigma.

I hope to use names in the story.

I have included my contact details below. For anyone who is interested, I’d be happy to chat informally before you decide whether or not to take part in the story. If you do decide to take part, I would show you what I write about you and seek your approval before I submit the story.

I have pasted below links to some of my article. The articles are fairly old. (I am returning to writing after some time.)

Best, Alana Rosenbaum

0412 806 475 alanarosenbaum@me.com

Research opportunity – the eating disorder voice

/ Sarah K Reece / Leave a comment

Phoebe is doing a PhD in the UK exploring the ‘eating disorder voice’, and has asked me to share their research in the hopes of reaching a more diverse group of people to be involved. I don’t personally know Phoebe so I can’t vouch for them, please take care to verify anything you get involved in. I’m always excited to hear of research in this area, it tends to be very isolated and disconnected between the different diagnostic categories and there’s a huge need for linking up and learning from these varied experiences.

Phoebe writes:

I am a trainee clinical psychologist based at Lancaster University in the UK.

I am completing research exploring the eating disorder voice, a voice which comments on eating, shape and weight. This is a common experience within the eating disorder community. Currently little is known about the eating disorder voice, with questions about whether it is more consistent with the experience of plurality/multiplicity, voice personification (when the voice has it’s own agency but not considered part of the self) or other multisensory experiences. My research aims to explore these experiences in relation to eating disorders further with young people who identify as female.

How to be involved:

I am hosting a webinar on Tuesday 5th October 2023 at 6pm-8pm (UK time) via Microsoft Teams. The webinar will be confidential and anonymous.

Email p.dale1@lancaster.ac.uk to book a place.

The webinar will be an open space to discuss your own experiences. I will present some of our findings so far to explore our current understanding and ask for feedback on whether those attending the webinar feel it represents their own experience of multiplicity or voice personification alongside an eating disorder.

I’m Hiring

/ Sarah K Reece / Leave a comment

I am looking to add to my team of Disability Support Workers. I can offer about 20 hours a week, happy to share the hours between more than one person. Our work is relationship based so onboarding is a gradual process, not a sudden diary full of clients.

I’m also looking for someone for Personal Assistant work. Usually this person does some PA work and some work as a Disability Support Worker, but I’m flexible about the arrangement. I have about 8 hours of PA work a week needed. Some PA work is online from home, some is at my office in Aberfoyle Park. Experience in admin and supporting people with ADHD will be well regarded.

People with lived experience of disability, mental health challenges, neurodivergence, and caring for others are particularly encouraged to apply.

More info here on How my Support Teams work and the Requirements of the Role.

These are casual roles under the SCHADS award.

Please get in touch if you feel you’d be a good fit, or to ask any questions. Please be human and give me some real info I can engage with not just a resume or list of qualifications.

Plurality/DID sensitivity reader wanted

/ Sarah K Reece / 1 Comment

Hey folks, I’ve been approached by a person who’s written a screenplay and is looking for a sensitivity reader to advise about the character with DID. Contact me if you’d like me to pass on your email.

My main focus when I engage with any media about plurality/DID is does it make it clear this is one representation of it, or does it imply this is the norm and everyone’s experience? The former makes me happy.

You can check out a couple of my reviews of other media here:

My favourite representations so far include Burton’s Alice in Wonderland, The Spiral Labyrinth, and Jam and Jerusalem.

Mental Health Master Class

/ Sarah K Reece / 1 Comment

Hey lovely folks! I’m thrilled to be getting back into my workshops. I shut down all my public speaking, workshops, and consulting when the pandemic took hold and it’s absolutely wonderful to be dusting it all off and getting back into it. Keeping my clients alive and figuring out how to hire folks to be their teams was absolutely consuming and I simply couldn’t juggle anything else for the last couple of years. Yet I have missed it so much, there’s a special kind of magic in these spaces you don’t get in one to one work. Groups have so much power to validate and support each other. Nightingale is kindly sorting out the important things like room bookings and dates so things actually happen and I will be turning up to the correct location and on the right day!

This time I’m running a session on mental health on Friday 3rd of March, so if you’re interested share this post. This is a fabulous introductory price so grab your tickets asap. 

You will get to spend a day redefining mental health from my unique perspective. Mental health training is all too often divorced from the real world. Services are imperfect, frameworks have limitations, and sometimes our madness is what saves us. Embrace the contradictions and find hope rather than confusion in the complexity. Support others to find their own meaning and discover the most useful resources they navigate a mad world.

When: Friday 3rd March, 10am – 4pm 
Where: 19 On Green*
How Much: $300** (GST included)
If you don’t have NDIS funds and are experiencing financial hardship, please contact us. Some reduced price tickets available. 
admin@sarahkreece.com
Where to Book: https://www.eventbrite.com.au/e/545817403547

*Fully mobility accessible venue with breakout room.
**NDIS payment accepted for self and plan managed participants, please contact us if you need an invoice sent to your plan manager. 

I would love to see you there. This is suitable for people with no experience at all, or those who work in mental health but would value a fresh perspective. Carers and people with lived experience are very welcome.

My intro to mental health talk

/ Sarah K Reece / 1 Comment

Hey lovely people! I’m running a session on mental health on Monday, so if you’re interested share this post, and if you’re available grab a ticket asap.

ID: flyer with prominent teal artwork “The Gap”. A downcast individual stands alone on an island in the ocean. On a different land mass a group are talking and gesturing at them.

Even before the pandemic, it could be tough to understand and navigate mental health and supports. This session is an intro to my master class and will give you a starting point for making sense of different approaches to mental health and how to help others.

When: 6th Feb, 11am – 12pm
Where: 19 On Green – The Brickyard*
How Much: $10**
Where to Book: www.eventbrite.com.au/e/intro-to-mental-health-tickets-530014125517

*Fully mobility accessible venue with breakout room.
**NDIS payment accepted.

Baby has arrived

/ Sarah K Reece / 7 Comments

We have a beautiful healthy little boy, born on Friday by c-section. It’s been a very long, disruptive process of inductions and hospital visits and stays. He’s not yet been named. He’s very beautiful with a full head of dark hair. He makes all the lovely newborn snuffles and snorking sounds. He feels like velvet. Nightingale was able to do skin to skin immediately after birth in the theatre and through recovery. He’s in newborn sleep mode which means loads of naps during the day and cluster feeding and squeaking all night.

ID light brown newborn wearing a blue singlet, snuggled up on a cream blanket. He has short dark brown hair and looks content.
ID black and white portrait of a baby wrapped in the striped hospital blanket and lying on his tummy. He’s looking very serious with big dark eyes.

Nightingale sailed through day 1 post surgery then started collecting a horrible bunch of post op complications. We’ve been stuck in hospital much longer than hoped because of them. She’s been through hell the past few weeks with so many painful procedures and things not working. I’ve held her hand through most of them and we’ve worked hard to protect ourselves from the stupidity and vagaries of the health system. We’ve succeeded far better than I expected in many ways, but far less than I’d hoped. There’s a lot of bad stories and a lot of pain and trauma. Most of the staff have been fabulous, and a few really saved the day by talking us properly through options, or listening to concerns which they thought were unlikely but turned out to be accurate, or protecting our wishes when someone else tried to take over. A few have been so bad we banned them from contact again. It’s so different to Poppy’s birth and yet so familiar. Miraculous and beautiful and awful and dark. We are grateful and relieved and overjoyed and exhausted and hurting and can’t put many of the experiences into words.

Pain is an ongoing challenge, Nightingale has been suffering from pain crises where she is in 10/10 pain, sometimes for many hours and the pain relief doesn’t work. A few nights back she was unable to move or speak for 6 hours while the staff maxed out all the pain relief options without effect. She should still be in hospital but we negotiated fiercely for home. I can nurse her with all the same resources they have the (except of course, someone to take over at shift change), and the stresses of the long stay in hospital have been building each day. The awful food, the hundreds of people who come into the room day and night, the Covid limitations on visitors so we can’t have both our kids visit, the lack of proper titration of pain medication, the way the plans change at every doctor shift change, notes going missing, stretched staff taking 45 minutes to respond to a call bell, the new person not reading the notes and harassing Nightingale for needing pain relief or blaming her for not getting out of bed every day because someone forgot to chart that she has, the ones who don’t understand consent or are confused by anything that’s not 101 typical presentation and keep giving bad advice, the ones who block agency and access to even the basic resources like an ice pack, the constantly having to explain, provide context, build rapport, and ally with every new staff member, the gratitude for things that should be a given, the sheer helplessness of being stuck inside a system with so little power. The costs accrue alongside all the good care and helpful folks. So we’ve finally come home late last night with a long list of medications and things to deal with and some home visits and outpatient appointments.

Everyone has been homesick and missing each other. Our community of family and friends have been looking after Poppy and Nemo. We’ve managed two hospital visit with them both, Nemo is anxious about accidentally dropping the baby, while Poppy is nearly exploding with excitement. We feel stretched at the seams. We’re trying hard to look after all of us.

ID Sarah holding baby. Fair skinned adult with green hair cradling a baby who is wearing a black onesie covered in bright coloured stars.

He’s beautiful. It’s incredibly strange to have a baby I didn’t birth. It feels a little like cheating at times, there’s so little effort on my part to bring him here, while Nightingale’s body has been a war zone. I feel oddly guilty.

I also feel slightly out of the loop. The hospital don’t see partners. They see a mother baby dyad. I’ve been absolutely invisible for most of the process. The same rules apply to me as any other visitor. All the paperwork says Baby of Nightingale. I have to find and store my own meals. I’m often not allowed to use the bathroom in our room but required to go elsewhere. There was a moment in theatre when they needed to take him off Nightingale’s chest and weren’t sure if they should put him in the warmer. I offered to hold him skin to skin myself and they were so startled and flustered and turned me down. The doctor asked Nightingale about her mental health as part of discharge, I’d spent most of the day crying but didn’t flag. We’ve done a fabulous job of protecting the connection between Nightingale and bubs, I’m not quite there yet.

I feel fiercely protective of both of them, and deeply relieved he’s okay, but also jolted by a hundred small experiences that tell me he’s not my son, like micro aggressions that have stacked on top of each other over weeks. I can feel the difference and I can feel the trauma jangling in my bones, the way I’m frustrated with him when the staff are doing something horribly painful to Nightingale and I’m trying to hold her hand and hold him too and he’s screaming and I can’t comfort him so I can’t comfort her. I hoped it might be better than this, we got our golden hour and protected our family as best we could. But here it is. We got the perfect outcome with him. We got a difficult outcome for Nightingale and I. We’ll keep repairing the damage. We’ve got time to grow all the good things. There’s a lot of love here.

Waiting for Baby

/ Sarah K Reece / 3 Comments

Everything in our lives for the past year has been moving towards this point, like a staircase spiralling up a tower. We are in the last days now, waiting. Our kids are enjoying visits to friends and family, while we swing between home and hospital for daily checks. We’ve had a bumpy ride with hospital, some wonderful staff and some hostile and probably traumatised ones. We’ve worked hard to build relationships, normalise seeking consent, and collaborate on the approach.

Nightingale has had a bit of a rough pregnancy, very high hormone levels causing severe morning sickness and some difficulties with low blood pressure and gestational diabetes. As a result we’ve been put on the high supervision pathway, with frequent growth scans, twice weekly diabetes check-ins, and so many hospital appts that some weeks it’s felt like we live there. Every time we attend there’s a different doctor or midwife, and often different contradictory information and advice. It can be very stressful.

Now we’re approaching the due date with pre labour contractions making every day a possible birth day. It’s exciting and tiring. There’s a steady stream of enquiries from folks wondering if bubs has arrived and we somehow forgot to let people know. It’s impossible to make plans, and anytime we can we’re just catching up on sleep.

We went into hospital recently for a catheter induction which was very painful and unfortunately not effective. Nightingale has previously had a c-section so some options they might usually consider at this point are too risky. There’s no signs of distress for bubs or Nightingale so we’re just waiting at this stage. After meeting with the delightful head of the department we have collaborated on a plan to try again next week, and in the meantime go into hospital for a checkup every day. Being able to go home to proper food and good beds has been deeply appreciated and helps a lot with the fatigue. Now there’s a clear plan it’s been a much smoother process instead of each shift change exposing us to a new person’s ideas and values. We’ve denied contact from a couple of staff who’ve been aggressive and controlling, protecting our space and the precious sense of safety and trust needed to labour and bring a child home.

It’s incredibly hard making decisions and trying to weigh up different risks and approaches, often with very little quality evidence to go on. I don’t envy the doctors who have to try and do this for many people every day. Tailoring individual care on the basis of conflicting research, poor quality information, or massive cohort studies full of unmanageable variables is very challenging. Each protocol and policy has unintended consequences and theories and ideas that seem so intuitive, so obviously helpful turn out to be full of incorrect assumptions and focusing on the wrong indicators. There’s so much we don’t know and so much knowledge we lose.

We ride a roller coaster together, and our community along with us. There’s times of deep peace and connection, such hope and joy. We’re ready for them, everything is ready. There’s times of fear and sadness, afraid of loss and regret. We tumble up and down together, riding the waves and watching the stars. Come home littlest love. We’re waiting for you.

Marrying Nightingale

/ Sarah K Reece / 6 Comments

Nightingale and I married in July, on a winter night in a forest beneath a beautiful old tree. It was magic. It was messy. It was beautiful, and imperfect in many ways both trivial and significant. It was us.

ID: A forest at night. In the foreground is a cluster of wooden chairs of various designs, arranged in rows facing a huge white dead tree. Pink, blue and yellow lights are cast upon the trunk, making it glow. Bottles of fairy lights are on tree stumps on either side.

We started many months before, with rings. It was a delicious way to spend precious date time together. Nightingale wears a simple sweet sapphire ring I brought myself years ago, and she took Poppy shopping to help pick out a lovely trio of rings for us to choose between or wear together. We tried on rings together, talked with jewellers, and fell in love with parti sapphires. It took us months to pick out the stones, taking them back and forth between sunlight and lamps to see them change hue. Design and manufacture was beset with troubles and they’re still not finished, so we married with our stand in rings. We planned a lovely hand fasting and brought beautiful silk ribbons for it, which we forgot to bring into the forest with us. There was a delightful frazzled moment mid ceremony where we each started to stumble across these facts and Nightingale smuggled our rings off and gave them to our wonderful minister just in time for us to give them back to each other.

Nightingale has a wonderful friend who is a minister living overseas. We wanted them for our celebrant but they can’t legally marry someone in this country. So we found someone local who was happy to team up with them. Then Covid and vaccination rules meant some very important people couldn’t attend the wedding with our celebrant. So we split the day into a tiny legal ceremony with the local celebrant and a big ‘renewal of vows’ in the evening with our friends and family and minister friend. This meant two ceremonies to plan, and a lovely restaurant lunch between intended to thank our hard working friends and family, that instead ran terribly overtime and took up most of the prep time for the evening.

A couple of weeks before the wedding we had to change venues for the reception due to issues hiring generators and accessible toilets for use in the forest. So our simple outdoor ceremony then ran across two ceremonies and three venues!

Vases accidentally got taken to the forest instead of the hall, leaving hundreds of flowers in buckets in a back room. People who planned to help set up with us were sick on the day and I woke up to a huge asthma attack after packing all the things the day before in the cold air. The flowers for the cake were wrong and had to be completely redone by the cake decorator that morning. It was complicated to say the least and various dear friends sprang into service and filled in some huge gaps to ensure things were set up and people were comfortable, fed, and enjoyed themselves.

In the end Covid or similar illnesses knocked a number of key people out on the day, guests, members of the wedding crew, our videographer, and most crucially darling Poppy who is still sad they missed out. Once our rings are finally done we plan to do a little ceremony again together to include them.

ID Large red cap mushroom with white dots nested in pine needles on a forest floor. Trees are visible in the background.

Our lovely people carried us through. The lights on the trees in the forest were incredibly beautiful and finally all our confused guests understood what we meant by the theme of WOMADELAIDE. Stunning red and white spotted mushrooms sprang up all through the forest that day. The day was perfect weather, cool but clear, and the hall we found was so well appointed, warm and comfortable with the most lovely person staffing it. Our dessert table was a rainbow of lollies as a nod to our lovely queer crew of teen guests who worked as kitchen hands for the night and gave us some of the most beautiful wedding cards.

ID: A trestle table set with bowls and jars or lollies and treats arranged on approximately a rainbow from red to purple. Two large rainbow umbrellas are open over the table. Visible are red jaffas, pink musk sticks, yellow bananas, yellow fantails, green spearmint leaves, and purple pastilles.

Clothes were lovely and difficult and complicated. As a non binary person there’s not a lot of weddings I see myself in. Nightingale thought she wanted a black dress but hated them when she tried them on. Thought she wanted pants but found herself twirling in the beautiful white dresses feeling oddly at home. We tried on so many clothes. I held space for her to experiment and find what she really wanted. She held space for us to be confused and excited and anxious and try on femme and masc clothes and try to figure out who of us was going to be present and how to present us. In the end we both wore beautiful jackets, white shirts and black jeans to the first ceremony, she wore a red sari to lunch, and we both wore amazing dresses to the evening. She spent several months having to convince her nearest and dearest that this was her choice and not being fostered on to her by someone obnoxious or tradition. Hers was a stunning white halterneck with clean flowing lines that fit over her baby bump, and had pockets! Mine nearly didn’t arrive in time, a guest kindly brought it in their luggage from the overseas seamstress. It was a lovely ivory and honey tulle skirt with a corset top. Nightingale wore fairy lights in her amazing braided hair, and they were sewn all through the lining of my skirt.

Everytime we talked to the celebrant or minister, I cried. It hurt. There are important people in my life who wouldn’t be there. I have been married before and I promised then to hold on until death parted us and I took that promise so seriously it nearly destroyed me. I’ve failed before, profoundly, when it meant everything to me and I still don’t in my heart understand why I couldn’t keep what I loved alive. How do I offer such imperfect love to someone I love so deeply? How do I believe in promises again? I couldn’t find the right words and they had to be right. There was so much sickness and loss and grief to row our little boat through and I felt so excited and so guilty and sad. And there were people there to hold us and guide us. We stumbled through the fears and grief to find what we do believe in, and what dream is so important to us we’re willing to put life as we know it at risk for. Knowing love hurts and breaks as well as heals and grows. Being hurt and broken and holding on to each other and the shared life we’re growing.

Friends helped me gather the flowers myself when we suddenly had an indoor venue that we wanted to decorate to feel special. I got the fabulous experience of being able to pick them out and plan the table flowers, cake flowers, and bouquets. I chose a range of flowers from the most important bouquets Nightingale and I have brought for each other since we first became friends. There were black lilies and white and green and blue chrysanthemums and white and blue delphiniums and tiny cream roses and andromeda and asiatic lillies and jonquils. Her bouquet was accented with green and mine with blue. It was spectacular and lovely and delightful. The tables were also decorated with willow branches and tiny red mushrooms, potted plants, blue books, and fairy lights in gin bottles.

ID: Table decorations. A potted black violet in bloom worth a decorative red and white spotted mushroom. To the left is a gin bottle with blue fairy lights inside. To the right are booked wrapped in brown paper. In front is a chocolate cupcake in silver foil, with a swirl of teal icing and two silver chocolate bird skulls on top.

The cake was a splendid teal buttercream chocolate cake with fresh black and blue and white flowers and silver bird skull memento mori. The guests had cupcakes in silver foil. For gifts we wrapped ‘blind date’ books by some of our favourite authors, the potted plants, lolly bags for the kids, and boxed macarons. So many of the people we love either garden, read, or enjoy a sweet treat.

ID: A three tier wedding cake surrounded by cupcakes. The cakes have teal icing, silver bird skulls, and edible flowers and butterflies. The main cake has a spray of black lilies and other flowers flowing down the right hand side. Black chocolate drips from each layer.

Our backup videographer was lovely. Friends stayed late and helped us clean up. They wrapped our last gifts and decorated tables and unpacked chairs and kept an eye on my asthma and kept an eye out for the few guests who knew almost no one else. Our makeup artist soothed many difficulties and helped us dress. Two dear friends missed the ceremonies because they set up the hall and spent the evening cooking for us! An interstate friend wound up mostly driving hired furniture and lights around instead of us. We woke the next morning incredibly ill with what turned out to be influenza. It was a brutal one and none of us left bed for a week. We didn’t get a honeymoon or to spend any time with our lovely long distance visitors. We still haven’t picked up all the wedding bits from the kindly folks who took home bits and bobs with them so we didn’t have to.

ID: Hand holding a cupcake with two bird skulls.

And it was perfect. No one fought, no one cried, we created name and pronoun badges for all the guests to make life more comfortable for all the gender queer folks to wear whatever we wanted to. The venues were beautiful, our guests delightful. People restrained themselves from giving us physical gifts as we currently have no home to put them in. We announced our pregnancy to much celebration. There was hot homemade soup and a stocked bar and a tremendous amount of kindness. We wrote emails about accessibility and tried to consider sensory needs, small children, chronic illness, mobility, safety, and comfort. We tried to ensure every guest knew at least one other guest. We brought beautiful shoes we didn’t wear and ordered lovely food we didn’t eat and stayed in a home nearby with an extra bed for tired guests we didn’t use and none of that mattered.

Nightingale was so beautiful and full of life. So lovely and nervous and kind. Putting the wedding together had been lovely and stressful and incredibly time pressured with so much else going on in our lives. I was afraid that on the day there would be tensions, sadness, fights, strain. But all the fears and tears and pinch and ache of the planning and stress just eased that day. We rolled with every change and gratefully accepted so much help and enjoyed all our guests and just let go of everything we couldn’t control.

Our vows were lovely. Our choices for everything were so considered and so specific to us. Our people carried us through bad luck, poor planning, and difficult timing with such generosity and grace. We made promises and vows we believed in. We exchanged rings. We held each other at the end of the longest day and felt exhausted and grateful. She said yes. She is my wife. I am her spouse. May we always be as lucky and as loved as we were that day. It was splendid, and she was spectacular.

Birth trauma

/ Sarah K Reece / 2 Comments

I’ve come home from the dentist today feeling shattered. I’ve struggled with medical appointments since Poppy’s birth. I was not treated well during surgery and that left me furious and frozen in medical settings. I’m very overdue for dental care and have started the grueling process of attending appointments for 11 new fillings. It was miserable today, my saliva thickened and I gagged a lot with my neck extended to allow access to the inside of my top front teeth. It took nearly 2 hours and other teeth are still irritated and sensitive from the previous session.

I’ve never been able to write Poppy’s birth story. Now so many of the details are hazy. I’ve struggled to understand the impact on me and the contradictions in the experience. I’ve felt deeply unreasonably humiliated by my struggles. I know trauma, it’s one of my major areas. I had PTSD at 14. I’ve read the things and been to the therapy and run the workshops and supported others. Somehow instead of creating grace for myself, my experience drowned me in shame. I should be immune? I should be able to deal with this? I shouldn’t feel the way I do. I trekked through a number of birth trauma specialists I didn’t find helpful, froze and forced myself through dentists and pelvic exams hoping I would just adapt. Then turned away from the whole mess.

Lately going to prenatal appointments I’ve run into all these ghosts. Going for a scan and finding myself in the room where they confirmed Tam had died. There’s ghosts of me throughout the hospital, screaming soundlessly and running with dark hair matted and white gown flailing. A portrait of derangement and madness. I sit in appointments, incoherent with rage and painfully aware that I present as rude, distrustful, obnoxious. All my energy goes into not screaming, stuffing all the words back into my mouth, not shaking, not biting the hand that touches without permission, not raving at the language that is so devoid of the concept of consent. There’s nothing left for the smiling and eye contact and apologetic shrug and recruiting them to accommodate us in any tiny way. I’m so tired until I’m sitting there, then I’m so angry and so aware my anger instantly strips me of any credibility or power I might have had in this place. They think of trauma as the panic attack, the victim. I am on fire with fury, watching their every move and listening to every word and seeing ghosts of myself weeping and running through every corridor, abandoned and untended.

So we’ve put aside some money to spend on a good dentist, and today on catching an uber home again because I’m usually too ill to drive afterwards and couldn’t find a lift. She uses the anaesthetic that doesn’t work as well but I’m less allergic to. And she says things like “you’re in control, let me know anytime you need a break”. I lay very still and my tears roll down my temples into my hair.

I come home and Nightingale brings me mashed potato and pasta and sympathy. I’m going to hurt for weeks and it’s exhausting.

I’m talking to people about birth trauma and how stuck and silent and alone I’ve felt. I know better. I know shame isolates. I know hundreds and thousands of other people will have come through something similar. I know how to use art, writing, talking, and research to process things. I know that knowledge doesn’t protect you from experience. I know it’s not punishment. I know self compassion is crucial. And I know it’s difficult to do when no one in the medical environment sees the injury, or responds with compassion. It’s difficult when it makes you feel weak and vulnerable. It takes patience. And a dentist who’s had good trauma informed care training. I wanted to be doing that training by now. Frustration and roads untraveled.

I feel voiceless a great deal of the time about most of my life, in a way I can’t express well or articulate even to myself. There’s been so many changes and challenges to my ideas about my life, my relationships, who I am, what it means and what to expect. Trying to understand late in life diagnoses of autism and ADHD, what they are, what that means for me, my family, my children. The ending of an eight year relationship with the parent of my child. Beloved Star cut contact with all of us last year after joining a church. Getting married, a new baby. Work stabilising and becoming less overwhelming. The awareness in the back of my mind that I’ve been diagnosed with something that indicates I lack social awareness and the resulting severe loss of confidence to speak and own my own story. Lost about how to be authentic and work, navigate complex relationships, parent. I miss having a voice and a community. I put a call out yesterday for help to attend the dentist and got no reply. Covid has not been kind. There are empty gaps in my world and they hurt. There’s so many ghosts.

I have birth trauma. I’m trying to find my voice again. I’m trying to make sense of which stories I can share and how. Today I was brave. I’m hurting. I’m not alone. We’re all alone. It is what it is. I’d rather take the slower and more dignified route to knowledge, through study. But lived experience brings not just the silence and scars, when we wrestle with it, it comes with powerful inside knowledge. When we can speak we break the shame that binds us all. I didn’t think it would happen to me, but it did. I didn’t think I would get stuck, but I did. I couldn’t fix this one myself. But someone like me must have found a way to speak to a dentist and because of them I could get broken teeth fixed today. And tomorrow I’ll pay that forwards.

Baby on the way

/ Sarah K Reece / 1 Comment

Nightingale is 22 weeks pregnant! We were fortunate to get pregnant again after losing Luna and so far all signs are of a healthy growing baby. Nightingale herself has been having a rough time feeling unwell and there’s a lot of medical appointments and a pretty intense attraction to naps but it’s all in the category of unpleasant and stressful rather than scary and dangerous.

ID Black and white ultrasound of our 20 week old baby in utero. It’s lying on its back facing up with a little snub nose. Part of the chest is visible on the left side, with a little hand over it.

There’s a lot of preparation happening, it’s a big transition for everyone! Poppy is excited and anxious and slightly confused. Every week all her classmates and teachers get dragged over to see Nightingale’s growing belly and told about the baby. She’s also worried that maybe she’s being replaced because she wasn’t cute enough in some way, so there’s lots of conversations about why people have babies, and why she was born and why we want this baby to join our family too. Her name suggestions we are accepting politely, so far they include gems like “flower” and “bus stop”.

I remember back when I was about three months pregnant with Poppy and Star first turned up, she was initially jealous and rejecting of the coming baby. We did a lot of work to hold a space for those feelings and help her find a valued role and relationship towards the baby. Once Poppy arrived she was warm and an incredible support when she had capacity. Poppy is much younger and I’m expecting some regression and anxiety, but hoping that a similar approach and good groundwork will ease the transition.

I am the non-gestational mother this time and I am feeling that deeply. I have so wanted another baby after Poppy, but I find myself disconnected and distanced. Nightingale lives and breathes the experience every moment of the day, while I orbit from a distance, preoccupied with tasks and appointments. I remember back when planning Poppy I was initially going to be the non-gestational parent and I was preparing by reading about other people’s experiences. They spoke about the sense of disconnection and social invalidation. Not seen as the ‘real mother’, not the father, often mistaken for a friend or sister, it’s an odd role. It’s easy to write myself out of the scenario by default, to talk about Nightingale’s baby the way others do, to sideline myself. Then I find myself feeling numb and that triggers shame and therefore secrecy. It’s hard to find words for, or to accept this very different experience. Everything is the same, and everything is different. The bond is there, the sense of responsibility and the fear. But that warmth, the sense of connection and joy is growing more slowly and sporadically. There’s a sense of unreality and a dreamlike quality to all the future hopes. The more afraid I am of things going wrong, the more my heart ices over. I play my role but fear the empty space inside me.

We go away together, just the two of us, to sit by a fire next to the ocean and out come all the unspoken and unspeakable things. It’s painful and tender and we both want to run away, stop listening, turn our faces from each other. We stay, and listen, and talk, and stop talking. The sharp things come out of our mouths without blood, and we don’t wound each other. The clouds pull apart and there are stars after all, bright behind them. Waves ripple down the beach in a slow dull roar that runs from far left of us to the far right, past the hills. We stop for food, for sleep, for medications, for a million bits of work and child arrangements that need attending to with patchy reception and phone batteries dying. Every time we think we’ve found the end of it and hold each other with relief, or make a joke, the next moment opens us up again and it’s a dark river rushing through us, nightmares of a bad future and lost hope. This is not what we planned, and we’re sad and confused. There’s so many ghosts and fears and painful things. The night is crowded.

And then it’s not. The waters finally run clear. The skies are bright. We hold each other and there’s patience and peace. And under my hands, a tiny creature rolls and kicks in the darkness, like a salmon leaping in water. “They wake up and kick when you talk” Nightingale tells me, and in my own darkness my heart leaps in answer. Oh little one. We’re waiting for you. Grow well.

Mourning Luna

/ Sarah K Reece / 1 Comment

Drums in my head, beating against the thick wall of my skull. We’ve lost the pregnancy.

Waking Nightingale’s teen to tell them, sorry Squid, we’ve lost the baby. Where? they ask, sleep blurred and confused.

Walking into my studio for the first time in months to wrap my book ‘Mourning the Unborn’ for a customer overseas. Then weeping in bed instead of taking the package to the post office. What strange timing, I’ve not sold a copy in over a year.

We find someone safe for Poppy to play with. I buy a bouquet and we bring it back to bed. It is bright and colourful and has the painful cheer of hospital flowers next to the white sheets. We spend the first day alone and entwined, breathing in the loss.

And then, nothing. I try to get through the days.

I’ve lost my voice, my loves, for a long time now. The unbinding of my family, my terrible depression, the building of something new… I’ve been so silent throughout most of it. I rarely share online or even journal privately. I take few photos, write fewer poems. There’s been no art in my world at all in years.

All my life has felt unsharable. The stories have been beyond my ability to put into words. I don’t understand them. They defy telling. I cannot speak because I do not understand. I cannot explain.

My life has been tangled into other people’s lives. I fear hurting others. I cannot share my own experience now without impacting those who share or once shared my life. I never want my words to be a trap or a weapon. I don’t have the strength to manage what might come in with the tide. So I’m silent. Cut off and waiting for I don’t know what. Unsure if this is only for a time or this is just how I am now.

Nightingale is savaged by grief, while I am numb. There was no body in my body, there’s no blood on my thighs, no community to grieve with. I tell friends we lost the baby, who tell me to send their love to Nightingale. The child that was also mine, becomes in death not mine. The miscarriage becomes hers alone. I’m behind the glass, handing out hot water bottles, dedicated and soothing and far more afraid of the impact on her and I, of losing us than I am of the loss we’ve just suffered.

Behind the glass it’s almost like nothing happened, there was no child, no dream broken. The child was not mine. I remember well the black void of trying to conceive Poppy after losing Tam, and I grasp at the relief like a lifejacket. There’s no void here. There’s nothing to grieve. I’m not falling off the face of the planet. I’m a good parent, an attentive partner. I’m functioning.

I don’t talk about it, write about it, cry about it. I don’t want a body to hold or a talisman or a tattoo. I want to hold Poppy and never let go. I want to run from the burning pit where my grief is not clean and pure thwarted yearning, but something ugly and sharp, pierced through with raging fear and doubt. Maybe the baby didn’t come because I’m not a good enough parent. Maybe they’re better off without me. Fertility as the blessing of the divine, the endorsement of the universe of your capacity. All such bullshit and yet my heart labors under the fears.

I can’t help but turn my face from the anguish of possible later loss, stillbirth, a child dead at 4 months or 2 years. The demand that I can handle whatever tragedy might come and still be here for Poppy. It makes me terrified of my dreams because I know tragedy will come, that grief follows love like a shadow. When getting out of bed each day is a torture of pain and mental exhaustion and humiliating incapacity, I can’t afford to risk much more. So, the horrifying traitor thought: maybe it’s better this way.

This is how mothers say goodbye, little Luna. Face turned to the side in rejection of all that you were and represented. Eyes fixed firmly on the child remaining, heart broken by doubts and unworthiness. Numb to the bone.

The brutal mornings become unmoored from the source of the pain. I drive Poppy to school and then collapse sobbing in the car and can’t drive home for hours. Nothing means anything. My heart runs from you. If you weren’t real, there’s nothing to grieve. I build no shrine and hold no memory tight of who you could have been and the life we dreamed of together. You were almost never here, real as smoke or mist, dew gone in the first light of sun. I betray you.

Nightingale is alone and not alone in grief. The primal need of grief is to know it’s shared. I add to her anguish. In the night we are raw and wounded. I turn my face back to the loss, and reach for a key. We watch Losing Layla and I find you there Luna, in the face of the dead child. Grief, pierced through with doubt and shame. I howl in her arms. My functioning evaporates like dew.

We go wander the WOMAD festival, under the trees and the flags, arm in arm. The night is soothing. We get a henna tattoo each for the child, a Luna moth and a moon.

ID: A brown skinned hand with a moon henna design, next to a white skinned hand with a Luna moth henna design.

I buy and finally read Terry Pratchett’s final book, The Shepherd’s Crown. The mere thought of it has been unbearable for years. Now I read it through and I cannot feel anything. My eyes are dry.

I miss all my children, the ones who could not stay, or who left. Everything tangles into darkness. I am dumbstruck, spellbound, silent, paralyzed. I cannot be who I wish to be, who I am. I cannot find comfort in your name. I thought losing Luna would feel like losing Tam, but it turns out each loss is distinct and each grief is its own thing. Everything hurts, and I cannot feel anything at all.

This is what it is. I was once so blasted by sorrow that I couldn’t feel even the wind on my face or hear the trains in the night. My whole world was ash, and I was buried deep beneath it. I’ve come back from the dead before. My littlest love, you’ve pulled me into the underworld beside you. I’ll find a way to kiss your bitter mouth goodbye and live again.

Why do I write this blog?

/ Sarah K Reece / 3 Comments

I lose the thread every so often and have to ask myself all over again. Why? And who for? What is this thing I’ve made?

I find different answers, sometimes the same answers that needed to be brushed off and given some love. Sometimes new ones that sit alongside the old ones, different, disharmonious, complex. Sometimes other people show me their answers, their perspective, and that can take time for me to process.

In my business development course, much of what I do was looked at through a different perspective. A new work of art to sell prints of is a new product. This blog, or an exhibition, is marketing.

I’ve had to learn to stop panicking that if I put down my Romantic lens of the world, I’ll lose it and never pick it up again. So I look at the blog for a little while through that lens. It’s true, in one sense. Almost all the work I’ve gained – except for some of the face painting, has been through this blog. In that sense, it is a marketing tool.

Which feels instinctively repulsive until I think more about what marketing is.

Which, when stripped back to the bones, is simply communication. Who am I? What do I think? What do I do? What could we do together? The fact that it’s so often done badly, deceptively, in ways that feel repulsive, dishonest, slick, intrusive, or faux friendly doesn’t mean it has to be any of those things. It’s simply talking to people I don’t know, in public. More than one at a time.

So, what happens when I think of this blog as marketing, alongside the other ways I see it (public art, volunteer peer work, self publishing, and so on)…

The first wrestle with a new perspective is often the freeze response for me. I seize up and stop writing. Without a clear sense of why I’m doing it or who I’m writing to or for, everything on my mind goes hazy and derails. It’s a hard one to be patient through.

I has taken me a long time to find a way to merge my ideas about work and the vulnerable, personal sharing I do here. For the longest time they were incompatible, unbearable, even. Work is the place we must be most professional, clothed, armoured, protected, shiny. It is, in my mind, the opposite of what I’ve been creating here: a shared look into my life, my reflections, experiences, growth. Unravelling what’s worked for me, sharing the keys, leaving the doors unlocked behind me so any others can also navigate them.

Professionalism and work have had to be reclaimed from the corporate world of depersonalised success.

I write to humanise myself to people who see me as other. To contextualise my strangeness. To have conversations that are not possible when I’m just getting to know people, but that without the context, I rarely get close enough to have. I get to address the confusion and anxiety of the ways I’m different and build connections with people who would otherwise never get to know me.

I write to claim my own story and my own unique perspective. To frame experience into narrative. When I can’t write or create art I’ve lost my key way of processing life.. I’m silent and the experiences are stripped of story and remain fragmented, immediate, and uncertain.

I write to ease the unbearable life threatening loneliness of people who are in some ways like me. Diversity and pain can both leave us feeling profoundly alone.

I write to share hope, to give an authentic account of the darkness and an honest witnessing of the joy and pain of human existence.

I write to leave a legacy for those who love me and those I love. If I died tomorrow, Poppy could find me in these words, find my deep love, my absolute thrill at bringing her into the world, my confusion and my contentment.

I write to help make a tiny corner of the world a little warmer, safer, brighter. To do what I can to bloom where I’m planted and share what I have.

I write because you write back to me. You share your stories with me, send me letters and gifts, you listen and speak and tell me I’ve done something that matters.

Hoping for a Baby

/ Sarah K Reece / 2 Comments

Nightingale and I are looking for a donor to help us have a baby together. She has one 15 year old, and my little one Poppy is now 5, and Star has long since flown the nest at 21.  

We have each been hoping to have another child for a long time before we got together. At times it looked likely and at others we’ve both tried to forget about it or push it off, hoping for better circumstances. When Rose and I separated as partners and began the process of figuring out how to be co-parents, I mourned the change in our family and began to close the door on any chance of another baby for me. I know how sick I was when I was pregnant, so it’s likely I’d need more support than is easy to arrange as a single parent, and raising Poppy in a pandemic has kept my hands full. I’d never want to do anything that took away from what Poppy needs to thrive. It just wasn’t feasible on my own.

As Nightingale’s friend at the time, I had wondered if maybe we could create a platonic arrangement to help us both bring a new baby into our lives. Single parents sometimes share houses or live close by to assist each other and I knew it was an important and painfully unrealised dream for her too. But my fertility issues persist, I’ve needed time to adjust to my new life circumstances, and age is not my friend in this matter. So I told myself to focus on all the things that were good about my life now, to remember what I was risking if I chased that dream, and I did my best to let it go.

Then Nightingale and I fell in love, and suddenly we have a tiny, precious, last-minute window, not for a baby each into two single parent families, but for one baby born into our family. There are still vulnerabilities, anxieties, and uncertainty. It might not happen for us. But there’s also all the shared resources, two kids at home who are doing well, and a long-held dream. So, with great care and hope, we’re reaching for it.

We’re letting our people know that we’re looking, because a known, rather than anonymous donor, is the only one we’re willing to consider. It has been so good for Poppy. Being able to update about health and medical information or diagnoses as they arise has been invaluable. Having a name and a photo to share with her from birth has meant there’s no gaping hole in her history. I’m grateful to her donor from the bottom of my heart. She’s a beautiful child who is fully aware of how she was brought into the world and knows down to her toenails who her people are and her sense of belonging. I have no regrets at all about how we brought her into the world, and no doubts about how deeply she is loved.

Here in SA, clinic donors can legally assist 10 families in our state to create children, and more interstate or overseas. These unknown half siblings can have very difficult relationships with each other if they meet, and some find it challenging to have so many other donor siblings out there. A known donor who has never donated before or assisted only one or two families who are known to each other is a very different scenario. There’s still a lot to learn about the unique needs of donor conceived children, but the research and learning from the now adults is all pointing towards openness, honestly, and shared knowledge, and away from anonymity, secrecy, and large numbers of children being conceived from small pools of donors.

We know there’s often people in personal networks who are good folks, who already donate blood or have a family member who needed IVF with donor eggs, and if they knew their friend, or friend of a friend was looking for assistance they’d be happy to explore it. And if we’re not the right fit or this isn’t the right time, there’s many other wonderful people out there who need assistance too and we can point you towards those networks. So, if you’re in South Australia, between 25 and 40, happy for us to get to know you and discuss how the AI donor process works (there’s no sex) and what it means to be a known donor (not a co-parent), please feel welcome to reach out.

To the victor goes the spoils: why perpetrators are treated with sympathy

/ Sarah K Reece / 4 Comments

In the aftermath of public cases of violence, rape, and abuse, the conversations and reactions tend to be polarised between hatred, fascination, and sympathy. Some perpetrators such as those who’ve asexually abused young children are dehumanised and reviled. Some such as serial killers are the subject of intense curiosity and speculation. Many are instead regarded in a sympathetic light that can have brutal consequences for victims.

People are not split into single categories such as victim and perpetrator. We may wear many hats and fit many labels in different contexts and across various relationships. It’s not inappropriate to consider the history and context of perpetrators and their actions. However, how we experience sympathy has a profound impact on social justice. We have a range of bias that favour perpetrators at the expense of victims, and if we are unaware of these we are easily recruited to behave in ways that protect perpetrators and further harm victims. Understanding these bias can help explain horrifying social, political, and organisational responses to violence and abuse. We can maintain compassion and curiosity without becoming part of systemic abuses by understanding how sympathy is elicited and countering the bias.

It is critically important to understand how sympathy is formed because when we sympathise with someone we are more likely to perceive them as credible, and less likely to see them as responsible for the circumstances. As strange as it may sound, there are many factors that stack the deck strongly in favour of sympathy with perpetrators. Here are two excellent articles exploring sympathy for perpetrators in more detail:

Sympathy follows specific trends that can be researched and understood. For example, we find it easier to sympathise with someone when we know more about them, when we share characteristics in common with them, and when sympathy with them doesn’t contradict our need to believe in a just world. To put that another way, we are more likely to sympathise with people when we feel they are like us and when it doesn’t cost us anything to do so.

The just world belief refers to the underlying hope that if we do the right things and are good people, bad things won’t happen to us. It draws on ideas of social justice and fairness and yet leads us to behave in ways that violate them. It’s a key aspect of victim blaming and part of our cultural demands for ‘model victims’. Our fear of being victimised ourselves influences how we respond to the harm experienced by others. This is a good article with more details:

Many of the characteristics of model victims – such as sharing a lot of personal information, making the listener feel comfortable, having strong but not intense, appropriate emotional responses that are clearly visible to the observer while discussing the events – are specifically inhibited by trauma responses. Numbness, rage, confusion, and reduced emotional range are extremely common responses to trauma and these directly inhibit the development of sympathy in others. Judith Herman explores these ideas in more detail in her excellent book Trauma and Recovery. Memory loss is an incredibly common symptom of trauma and yet it often severely damages the credibility of a victim because our expectations of their capacity to recall and communicate the experience are completely at odds with the reality of how the brain functions in those kinds of circumstances.

The standards to which we hold victims are impossible for anyone traumatised to attain. They are also astonishingly high. Victims of rape or sexual abuse must defend their sexual history, clothing choices, and personal virtue. A less than perfect victim is accorded less sympathy. In contrast the standards perpetrators are held to to garner sympathy are astonishingly low. Flagrant, sadistic, violent, or cunningly concealed abuses may be rendered less horrifying by any small presence of a humanising factor.

It’s particularly interesting to note that the same mitigating factors when present for either the victim or perpetrator tends to favour the perpetrator. If the perpetrator was drinking, suffering from mental illness or cognitive impairment, or experiencing life stress they are seen as less culpable. If the victim was experiencing any of those things they are seen as more culpable and less innocent.

Those same circumstances that can make us feel sympathy for the perpetrator as less culpible, can also make us dismiss a victim as less socially valuable. In the same way that less outrage is raised for missing black children than white children, harmed disabled people, less attractive women, queer people, poor people, and marginalised people of all kinds are already perceived as damaged or at higher risk, and at times we are less confronted by and concerned by their abuse and less sympathetic towards them when they’re harmed.

Perpetrators ask very little of us, they want to continue the status quo, stop having the uncomfortable discussions, and keep the focus away from the victim.  Their desire to minimise, deny, downplay, forget, move on, and avoid change are all socially and politically comfortable.  Victims on the other hand need us to recognise the scope of their losses and suffering, to respond to their pain and rage, to address their vulnerability or accept the inevitability of harm to some.  The absolutely fair and reasonable needs of victims are considerably more difficult to respond to than those of perpetrators.

Strangely enough, in many circumstannces, the more clearly innocent the victim is, the more likely they are to be blamed. By using a combination of sympathy bids and DARVO, perpetrators persuade organisations and cultures to allocate sympathy in ways that betray victims. DARVO stands for Deny, Attack, and Reverse Victim and Offender, a common set of perpetrator behaviours that flips responsibility for abuse onto victims.

This betrayal trauma sets victims up to blame themselves, and makes them more likely to suffer long term mental health impacts, and be victimised again in the future. It represents an abuse of our privilege and social power to respond in this way.

So the next time you find yourself trying to process your feelings about abuse or assault, be aware that we are easily hijacked for many reasons to sympathise with the perpetrator over the victim. Shame in perpetrators predicts high levels of re-offending – I’m not advocating for hate. But participating in the betrayal of victims as a community harms the victim and makes re-offending more likely by the perpetrator. It is essential to hold perpetrators to account and maintain a deliberate focus on the losses suffered by the victim, not those suffered by the perpetrator. Justice and compassion are not served well when perpetrators are able to keep us focused on their humanity and their losses, generating sympathy and reducing responsibility while distracting us from the humanity and suffering of those they’ve harmed. Be careful where your sympathies are drawn.

Poem – my business is not who I am in the world

/ Sarah K Reece / 2 Comments

I read this fabulous article tonight about objectification at work, How to build a life: A profession is not a personality.

It was posted on the ever brilliant and relevant Freelance Jungle, the best mental health resource for Australian freelancers I’ve come across. It reminded me of a poem I wrote in my journal a few years ago when I was wrestling with my obsession with work. When I was sick and unemployed I struggled deeply without a public identity because that is usually our work. Struggling to figure out work left me tangled and defining my self and life in ways that disempowered and wounded me. I recall listening once to a fabulous presentation at a world hearing voices conference when one of the speakers told us he felt as defined and limited by his public identity as a psychiatrist as he used to by his public identity as a schizophrenic. He introduced himself as a person who worked as a psychiatrist. It was strange and thought provoking. We are all more than the roles we play, and it seems to be just as important for us to remember that as it is for other people to perceive it about us. 

My business is not
Who I am in the world. 
It is not
My identity, my value, my self respect
Not the sum of me
My place
My impact
My legacy. 

My business is a project
One project among many
A way to earn money
Make a difference
A way to be in the world.
It is not the only way
The one, true, right, way
The sum of every effort until now
Validation for all that came before
The reward for every tribulation.
It is just my business, one dream
Among many.

My business is not 
Proof that I've 'made it', or
Evidence I've settled, given up, sold out, lost faith.
It doesn't mean I've gone over to the other side
Become a success or failed a character test
It's something to be proud of but not the only thing
It's a part of me but I am not
A peice of it.
If it died 
I would still be here.
My business is not
Who I am in the world.

Support Worker needed for Northern Adelaide

/ Sarah K Reece / Leave a comment

I am hiring to build up the team of a lady in the Northern suburbs. I can offer between 8 and 20 hours a week, happy to onboard 2 people for around 10 or with an eye to increasing up and adding other clients once they’ve settled in. Our work is relationship based so onboarding is a gradual process not a sudden diary full of clients.

Male staff are particularly suited to this client, if they are keen on gym, sports, and working out that’s ideal. There’s 2 other staff on her team already who will provide support. Due to mental health issues this client is always supported with 2 staff rostered together. Staff assist with domestic tasks such as cleaning, small scale gardening, and cooking, with transport to appointments, managing admin such as mail and appts, and providing companionship and help to access community. You’ll need to be comfortable with people with mental health challenges and have a friendly and patient disposition.

More info here on How my Teams Work and the Requirements of the Role.

I’m hiring again, so please get in touch if you feel you’d be a good fit, or to ask questions. Please contact me via email or chat using FB or discord, not phone. Please be human and give me some real info I can engage with not just a resume or list of qualifications. I’m far more interested in your values than your training.

Nightingale Proposes

/ Sarah K Reece / 4 Comments

Quietly and secretly, Nightingale and her son crafted a beautiful proposal. In a dim room in the city, above the scrape and bell of the tram line and the river rush of traffic I found her waiting for me one evening with a table laden with gifts. She had been collecting mementos of us; sheet music from our songs, text from the books I’ve been reading her to sleep with, lyrics and poems and quotes we’ve shared. She printed them onto my favourite colours, finding the codes for teal and not aqua with the same fumbling determined uncertainty I have in her world of music and song where I think I can almost hear the distinctions she points out. These papers were folded into 5 petal origami flowers, one for each day we’ve been dating.

ID a coffee table with a white table cloth, covered in multicoloured paper flowers and candles, in front of a huge window through which there’s a view of the city lights and a gibbous moon rising.

She disguised it as a work project, folding in lunch breaks, hidden in her lap on the bathroom floor while I had a hot bath to ease pain, in the hours I was asleep or working. They are double sided with paired matched mementos, the music and art of our love.

ID close up of origami flowers, candles and gin.

Nested into this paper bouquet were fairy lights, candles, rose petals, our favourite chocolates and gin, and the set of rings she brought us. Three stacking rings as placeholders for the engagement ring yet to be designed. Three slightly different rings so we can each choose which to wear and change them as we wish. To have our plurality and non binary identity given such care and room to breathe is such a joy and relief.

In the centre of the table was a love letter tied with black ribbon. I sat and read the flowers, opened the chocolates, smelled the candles, breathing it all in while the moon slowly rose outside the window. There’s tears and joy and peace. In the letter she talked of our love and what I mean to her, and she asked me to marry her. Words can be hard, voice is harder still.

I say yes and kiss her face and hands and then write yes on paper and nest it into the flowers beside her letter. At 3am when the magic will seem strangely distant and maybe a dream, it remains there – her question and my answer. A beautiful anchor in such strange seas.

ID a person kneeling before a table of rainbow paper flowers, reading everything with great care.

I’ve spent years learning how to let go of what I cannot have, how to release my desire for control over what cannot be controlled, and how to let go of dreams that have broken my heart. Suddenly she is there, so incredibly real and beautiful, moving towards me, kisses on my mouth and a thousand arrows in my heart and my life is no longer about letting go or accepting the fates but grasping hold with fierce anguished joy. It rains in my nights again, and when there’s no rain there’s tears like rain, talking through the nights, hearts on fire. The children sleeping and stirring and singing and hurting and needing and loving and somehow embracing us both despite all the stories and norms of fractious step families. The things we expect to be hard are easy, and where there’s sorrow and loss we can name it and give it a place to be. The stakes are impossibly high and at the same time they’ve never been more within reach. We hold each other and weave together this dream of our future, unpicking and reweaving and getting tangled and easing them out again with patience and courage. She’s magnificent. Love is always a wild thing, untameable, a leap, a gamble. And yet, I feel so grounded, roots deep down and my voice unbound. She’s beautiful and wounded and fierce and devoted and I adore her. The family we make together is utterly worth the risk.

ID two hands over lapping, each with place holder rings. Mine is the white skin and all three rings stacked. Nightingale has 3 small sapphires on her placeholder ring, her hand is slender with brown skin.

When we first started dating we feared losing our friendship. Now I think of my life without her and that’s a cold wind, an empty chill. Life is painfully short, impossibly long. We wrap ourselves around each other and hold on. Some nights it rains. Some nights she sings. I’m writing again. Life is hard and bountiful. The garden is well tended and yields fruit. In the winter, we plan to get married.

Being Disabled at Work

/ Sarah K Reece / 3 Comments

Well, 10 years in to having my own ABN, I’m now running a small team of 9 employees and have a few fabulous subcontractors and other businesses providing support too. I’ve been thinking a lot lately about disability at work because as a person with multiple disabilities work has been a huge challenge for me, and most of my employees have some form of lived experience of disability either themselves or as a carer in their personal lives. Figuring out access needs for all of us is a constant theme in my life at the moment! I’m presently overhauling all my HR documents to make them more inclusive and accessible, it’s so time consuming but also so essential.

I’ve also done a lot of training and mentoring over the years trying to figure this process out. Sadly, most of it has been worse than useless, it’s been so uninformed that it’s done harm. I’ve had to un-learn a lot of what I was taught because it became part of what was holding me back and adding to my struggles. The micro-business for people with a disability cert 3 I did 8 years ago was destructive. Experiences with some (not all) Disability Employment Service Providers was likewise, as were various trainings offered by mentors, business support services, NEIS, and so many other systems intended to make life easier for someone like myself. They almost all floundered on two very simple diversities: poverty and disability. Without a good grasp of those two realities, so much of the material was a poor fit and in some cases seriously so.

I’ve got more confident about walking away these days and in some cases providing feedback. Here’s a de-identified email I sent to a mentoring program I was in a year or two ago:

Just putting down in email some of the things we’ve been talking about. I think XXXXX has a lot to offer me and other medium to long term unemployed folks with disabilities, but some aspects of it are also concerning, stressful, and potentially harmful. My brief rundown is:

Positives:

  • Strong focus on increasing individual capacity
  • Wide range of useful methods with a good research base
  • Positive approach to challenges’
  • Useful overview of the business development processes
  • Excellent use of human centered design tools for product and service development

Difficulties

Most of the information is generic and not disability specific, particularly for people who are neurodivergent. (people’s who’s brains/minds work differently from the norm, such as autistic people, those with ADHD, giftedness, brain injuries, mental illness, and so on)

Much of the information is presented in a decontextualised way which is highly risky for people who experience systemic discrimination and trauma (both almost ubiquitous to the disability population) By which I mean things like

  • Telling people that empathising with other people groups is easy has the potential to be not only vastly inaccurate but shaming. Many people with autism experience over or under developed empathy in very challenging ways, most people who have been long term poor find it very difficult to empathise with people with money such as potential employers, and generally they lack the intimate access necessary to such people to form it.
  • Another example: “You’re not limited in any way if you have internal motivation” which is a cruel set up for shame and humiliation when people discover that in fact systemic oppression still exists and issues of stigma still impact their lives in harmful ways.
  • We were told often that habit formation is very easy “anyone can do it, it’s just like breathing!”, whereas difficulty forming habits is a common aspect of ADHD. (for more about this see here) And breathing is an autonomic reflex, not a habit.
  • Told that “If we were more outside our comfort zone, we would have more growth and success”. This is risky advice to give to vulnerable people, and there’s a substantial body of research that shows the benefits of safety rather than risk in promoting growth.
  • Told that we all lack motivation and struggle to make ourselves do hard things.
  1. there’s little evidence for any widespread personality deficits in either the poor or disabled communities.
  2. a quick discussion with the online group revealed the usual more complex relationships with motivation with 2 group members who hyper focus, 2 who find positive feedback distressing, 2 who use negative feedback as perverse reinforcement (common for marginalised communities) and only 1 who found motivation a concern in general. This took about 3 minutes to ascertain.

Quality of the facilitation. AAA is using a ‘mug and jug’ style of education where he the expert passes on information to we the students who are in need of his expertise. BBB is using a more appropriate adult facilitation style that includes more opportunities for reflection and tailoring of the information to the students. For example, CCC in the online group was clearly reluctant to engage and feeling alienated by the focus on positivity. A short conversation with the online group revealed a distressingly high level of job rejection with attendant loss of confidence, social alienation, and personal vulnerability. Without care for this context the information is useless at best and actively harmful at worst, playing into victim blaming dynamics already culturally prevalent for the poor, disabled, and unemployed.

A great deal of the information is inherently contradictory and rather than exploring that it’s being glossed over. For example, we are being told that happiness is the key to success but that motivation is not a feeling and we shouldn’t use feelings as motivation. This is fertile ground for discussion but that’s not being given time. Efforts to discuss are being dismissed as intrusive and needless, making the space less safe for anyone to volunteer information or contradict provided wisdom.

Conclusions

Many of the underlying assumptions about the causes and cures of long term unemployment need closer examination, as does the risk of the intervention itself. The intake materials for the course were based on the readiness to change materials used in drug and alcohol rehabilitation services. They had no data points reserved to indicate that any life domain was currently progressing well. The underlying message was that all aspects of our lives were in need of major changes, and that we were indicating our ‘readiness to give up unemployment’. However the central tenants of the readiness to change model – meeting people where they are at – is not being used. So people like CCC are being put under pressure to grasp the power of positive mindset rather than being offered the validation and grief tools needed to process their history and recover from it.

So far the course has given me much useful food for thought, but I’ve also been told that I am where I am in life because I lack enough empathy, willingness to take risks, self motivation, willingness to make myself do unpleasant things and to choose growth. This is grossly inappropriate.

Recommendations

If you would like to consider your program in a more holistic manner, I suggest the use of Critical Appraisal tools by Rychetnik (see more here) who was one of the pioneers of evaluating unintended consequences of interventions such as yours. I also recommend using frameworks such as Trauma Informed Care (more info here), and social determinants of health to contextualise your information in more appropriate and less risky ways.

I’m not sharing this to shame the program in question – there’s so many out there like this and most are put together by good folks with great intentions. I’m certainly not getting it all right myself either, this is a difficult space and I’m constantly messing up and learning with myself and my staff. I’m sharing to help you think more critically about what we think we know about disabilities in the workplace, and why it’s so crucial to take the onus of access and modifications off the people with disabilities and start placing them back on the employers and services. The burden of having to navigate these things is massive and largely invisible.

Understanding diversity is incredibly important when you want to turn good intentions into actually useful outcomes. If you’re going to be working with people with disabilities, poverty, and long term unemployment then you’d better talk to a few them and do a modicum of research before you start, otherwise you run the risk of simply creating one more shiny, painful obstacle in our lives. It’s absolutely possible to support people with disabilities in the workplace and we are competent, brilliant, reliable, and highly skilled. We can do better about how we do this.

Poem – Connection

/ Sarah K Reece / Leave a comment

After late nights talking, I wake early and creep away from sleeping child into a bath. Reread a journal from 2018 and find this poem about Poppy.

Connection

Late spring evening
She's in the bath, giggling
The wind outside is restless
The air velvet and warm
As the time passes
Something eases like sand flowing
Through an hourglass
The noise goes quieter
And quieter still
The noise goes
Into the silence
We are still
We look at each other
Really alone and
Really looking
And we laugh. 

Introducing Nightingale

/ Sarah K Reece / 4 Comments

I have a lovely partner, who on this site shall be called Nightingale.

She has been singing in my nights for so long. I used to read about friends, watch movies about what friends could be for one another, trying to learn. Undone by hopeless yearning. Over the past few years, as my family fell beneath the onslaught of illness and anguish, I turned to my friends. Nightingale was one of those who responded.

First lockdown last year, I ran to the edge of my strength for Jay. I found myself voiceless and naked in my bath, trying to call hospitals for them, losing hope. One of my friends (not Nightingale) came and sat next to me on the wet floor, interpreting texts and whispered stutters to make the calls that were now beyond my capacity. It was a horrifying and precious moment, blazed in my mind forever. My own vulnerability and nakedness irrelevant beside the strength of our friendship and our shared fears and hopes for Jay. This friend moves in and out of my life on tides as friends do, sometimes a weekly visitor and companion, sometimes focused elsewhere or drowning in terrible depression. She’s very precious to me.

Poppy regressed terribly as Rose disappeared into a hospital that covid restrictions closed to children. Until then I had taken Poppy into every hell Rose was lost in, every single day I made sure that Poppy saw Rose no matter what. Suddenly not all my determination could scale the walls between them and Poppy falls apart into a frightening, angry mess. I visit another friend, not Nightingale, who holds me, feeds and bathes the child, waits on the phone with me as Poppy rages in the car in the night, savage with grief and unwilling to go home to the too empty house.

The person beneath the landslide cannot coordinate the rescue efforts. Rose slides towards death in the ICU, two friends sit with me and listen to my incoherent pain. They construct lists of needs and allies, menus of options I can choose from. They do the asking on my behalf, the reassuring my fried networks of people that what they are doing is enough, that I am not hurt if they cannot help, they comfort and soothe when I’m lost for words. On days I can’t stop crying to speak they run their lists of things that might help and I only signal yes or no. They are within reach always, on my phone, a message away however far apart we are. I am crushed by the weight of fear and grief. Someone turns up every day to my home and I scrape myself off the floor, out of bed, off the couch. I gasp for breath and do chores, make meals, push Poppy on the swings. In the background these friends orchestrate.

Sick and bedridden with pain and vomiting, friends and family arrive to take me to hospital and Poppy to bed. Friends stay with me by text on my phone as I wait an hour to be triaged and advocate on behalf of a bleeding hemophiliac gentleman and a distressed psychotic man afraid he’s been infected with AIDS. My friends are my lifeline in the bizarre world of the ED, they hold my heart and my sanity. They are Faber in Montag’s ear, the soothing drone, the context, the cautious advice.

Through these nightmares I have been profoundly blessed with a community of friends and family who have brought meals, head rubs, movie nights, mopped floors, listened to me, pushed Poppy on swings, held me as I held up a sky that daily seemed to somehow weigh more.

I tell you this so you can understand that I’m no longer starved for friends, and that among such incredible gems, these faithful and loving people, Nightingale. In such incredible company, her compassion still shone. Enduring her own painful circumstances and challenges, she showed up for me, and let me show up for her. Our lives weaving closer with each kind gesture, each shared painful secret and moment of joy. We grew closer through terrible storms, finding in each other a companion with dark humour, bitter wisdom, and stubborn determination to endure. When little was constant except the frailty of our dreams, we were constant to each other.

Poppy is so deeply loved, but she hasn’t had the carefree childhood I’d hoped for her. Given the losses and confusion for her I had resigned myself to being without a partner for a long time. She adores Rose and I and has had so much to make sense of already, I felt that there was no way I could bring someone new into her world for the next 10 or 15 years. Letting go of Rose as a partner has been a terribly long process, our brief wedding plans last year, their new partner, the last hopes of our romance early this year. There’s bitter pain as we try to birth a new type of relationship to each other, navigate so much with so little. I joined friendship apps. I grieved. I cleared out my house and organised my drawers. I accepted the need for stability and security and I poured myself into my friends, into Poppy, and my work. Old dreams came creeping back like lost cats.

Nightingale was there all along. One night when she hugged me the world shifted beneath me. A different future entirely stood before me like a door I’d never seen before. I stood for a week on a precipice between the familiar road and the new door. Continue as only friends or confess that I could fall in love with her? One path I could see and understand, the other felt like stepping off a cliff into the unknown. Why risk it all? And how could I possibly still believe in love? And yet. What else is friendship but love? I am so loved, and I love already. There’s little room for jaded cynicism in my world, I know how lucky I am despite all the broken dreams. Maybe I would share and she would not feel the same. We’d laugh and shake it off and life would continue as before, infinitely precious.

That’s not how she felt. I’d been firmly shelved as unavailable in her mind back when we first met. Now everything changed. Could fall for each other became are falling for each other. We barely slept the first week, unpacking every fear, every reason to keep the door closed, the losses and fears falling on us like sledgehammers. Just because we feel something doesn’t mean it’s a good idea. There’s so many tangles and complications. Love isn’t the same as it was at 16 or even 29. We’re both single parents with responsibility for more hearts than just our own. We both know what it is to hope and lose. And yet, some of the impossibly difficult things have somehow been so easy. Nightingale was already one of Poppy’s safe people. We already know each other well, in some strange ways nothing changes. In others, everything changes, and some of that has been terribly sad and painful, others of it tender and wonderful. We work so hard, but it seems to bear fruit. There’s sweetness in it, not just toil and tears.

Friendship to romance is new to me, I’ve never experienced the sense of security that comes with already knowing the other person, already caring for them – and being cared for by them, so deeply. We find each other’s hands and go through the door, flying and falling. It’s giddy and beautiful and scary and lovely. There’s someone to come home to at the end of the day. I read her to sleep, I sleep in her arms, she shows me sides of herself hidden from the world and lets me hear her sing. We hide from the world on a couch and listen for the rain.

Everything changes and I don’t know what the future looks like anymore. So many dreams suddenly within reach like far off stars that turned out to be fireflies. She’s breathtakingly beautiful, incredibly strong, wounded, tired, and like a tree with deep roots she holds fast in all kinds of weather. Like a nightingale she sings in the dark. Whatever happens next, I’ve been phenomenally lucky to have each of my friends, and for her to invite me into her life the way she has – that will always be a privilege and the most lovely of memories. Unlooked for, fraught, passionate, precious, dazzling. My heart is full of hope and she is my home.