First print run of my brochures advertising a talk I give! You can read it in full on my business website sarahkreece.com.au. Very excited. I was sick all night and spent the morning in bed, but wound up having a really nice day. Lunch with a friend, tremendously excited about my brochure, and returned all my overdue library books. 🙂 Very successful day. 🙂
Author: Sarah K Reece
Humming
Humming with happiness. Starting to get better! Reducing pain killers finally. Had a wonderful face painting gig in Stirling today, dappled light through trees, so peaceful. Well enough this evening to update the DI website a little, yay! I’ve added some new pages and I’m working on fixing up all the language to be consistent across all the pages. I’ve settled on using the term ‘people with multiplicity’ as the best inclusive, non clinical description I can think of for now. I’m still using parts for alters which I know some people hate but I can’t think of anything better. ‘People’ just gets seriously confusing because it’s so hard to work out whether we’re taking about alters or other people in different bodies! Work in progress!
So I have a few new pages up:
A note about language
Transgender & Multiplicity
Memory & Amnesia
Feedback would be most welcome. I’ve also finally decided my flyers for talks are ready, and two are now uploaded to my business site! There so much still to do, but it’s so very exciting to be well enough to make a start. 🙂 You can check them out here:
Tomorrow I’ll be resting and working on some housework. I get to snuggle and hang out with Rose all weekend. 🙂 Things are looking up!
Homeless and happy
The other day I ran into a travelling artist Novak Tonkin and pooch Zeus. He asked to take a photo of Zoe and I for his flickr page which is here. He photographs his travels and people he chats with as he bikes around Australia. Great chap to have a chat with.
Once again. I’m struck by the difference between different experiences of homelessness. Some of it is about choice, some of it is about community, and a lot of it seems to be about skills and resources. I wish I’d known half the things this guy knows when I was homeless. How can we change experiences for people who are struggling? Surely part of it is linking people to peers who are coping, and sharing those skills.
Jumping at Shadows
I got really sick in 2001. It took another two years to get the first diagnosis that made any kind of sense – Chronic fatigue syndrome (CFS). Two years again to fill out more of the picture with diagnoses of Fibromyalgia and Endometriosis. It wasn’t until 2007 that severe Dissociation started to round out our understanding of my perplexing and severely disabling experiences. There are still some unknowns. For example, we know that none of the mucous producing cells in my body work very well, but we don’t know why. It doesn’t fit with any my existing diagnoses and I test negative for the only other diagnosis offered, Sjorgens. So I live with dry skin and dry mouth that destroys my teeth and dry eyes that cause widespread nerve die off and means I have to be very careful about caring for them because I can’t feel it when an irritant gets into my eye. The only other possibility offered to me is chronic anxiety destroying mucus function due to PTSD, which I developed as a child.
Today, it’s day 14 after the surgery and I’m home on the couch, completely exhausted and scared. I have some very, very bad memories, and at times like this I get scared. CFS and Fibro are diagnoses of exclusion. That means I spent years getting tests and seeing doctors. We learned things the hard way. Like that my liver doesn’t seem to work so well. Or that I’m allergic to opiates. I tried a lot of pain killers under desperate circumstances before someone figured out it was the whole drug family I can’t process. At one point, my health was crashing so fast and so catastrophically with no answers that a specialist warned me they might be figuring out what was wrong with me in an autopsy. My mother was told to be prepared for a funeral. There was so much fear. Bone deep, soul killing, trembling but nowhere to run, and no one to fight, and no point in screaming, and no escape, fear.
There’s host of horrifying memories. Lying on the floor vomiting due to an allergy to Digesic, stomach acid burning in the 6 stitched holes in my mouth, the sensation something like biting down on burning coals that don’t cool. Screaming, unbearable agony.
Memories more banal, the daily suffering. Not leaving the house in months except to see doctors. Being told everything was in my head and I just needed to exercise more. Passing out on the footpath while walking, trying to manage Depression I didn’t have. Endless rounds of job applications for work I wasn’t even slightly well enough to do. I remember months of severe dental pain, living on milkshakes and blended peas. I remember baths in my clothes so a family member could come in and wash my hair because I was too exhausted to lift my arms that high. Old friends asking me in bewilderment “What do you do all day?”, new friends telling me they wished they had CFS so they could have a holiday. Crying with frustration and wishing desperately for the day I would be well enough just to do half an hour of cross stitch a day, for my sight to return and the pain lessen and a tiny bit of energy to come back, not enough for a life, just enough for a tiny, quiet hobby to give some shape to the endless days. I would have given anything, just for that.
So there’s terror, and memories of terror, and a kind of survivor’s guilt. I know many people are still living in their nightmares, lives shortened by illness, chronic pain and disability destroying dreams and caging a big hopeful heart in a dark place.
Today I’ve been scared. I had a terrible down turn in my life after a surgery previously. It was to remove infected teeth, I was told the abscesses were drip poisoning me and I’d be much healthier after the op. Instead I had allergic reactions to everything and my health crashed. For the next few years I needed a wheelchair or electric scooter to be mobile most days, I was so exhausted and in such terrible pain. It doesn’t take much to bring back that fear.
So today I’m reminding myself that those days are gone. Even if I got really sick again, it won’t and can’t be like it was. I’m no longer lost and bewildered in a dark woods full of monsters. I know the territory now, I understand the need for grief, the place of rage and humour. I’m not being tormented by a mad lover or spending energy desperately trying to hold onto empty friendships. I have names for what is wrong with my body, I have a safe public housing home to live in, a secure income on welfare, a lovely doctor who looks out for me. The nightmare that scares me is just a memory now, I’m jumping at shadows. So I sit here on the couch with my white and orange dog, and we eat Zooper Doopers and watch Buffy and life goes on. The fear that was choking me settles. The trembling in my bones calms. This is my life now, and sometimes it’s scary or painful or hard. But those terrifying days of loss and torture are gone. I made it through.
Prodromal
Well, yesterday was trippy. I’ve identified that I’m currently prodromal, that is, vulnerable to developing psychosis. Well hurrah. I thought I’d got through enough of the surgery recovery to no longer be at risk, but apparently not. I’m allergic to anaesthetic and opiates, and I don’t tolerate antibiotics particularly well. The last few weeks I’ve had way too much of all of them. Psychosis is a symptom of liver stress. The hospital was supposed to check on my liver with a blood test before sending me home but the doctor who discharged me was a… was in a hurry and couldn’t be bothered. Rose took me to the GP a couple of days later but he couldn’t draw any blood from me. I haven’t been able to get to a blood centre since. So I’m assuming my liver is bouncing back as usual but don’t really know.
Yesterday was hot (38) and I was exhausted after working on the weekend. I spent the day hoping to be able to get to my night class at college and feeling increasingly despondent as pain levels and exhaustion stayed high. In the end I decided that if I moved slowly enough I could manage it. So I got dressed and headed out on the bus. That’s three of my risk factors right there: heat stress, liver stress, and exhaustion.
There’s about a 700m walk from the bus stop to college, through town. This was almost beyond me, particularly in the warm weather. I took it slowly and accepted I might be late, and brought coins to buy a cold milk chocolate from the canteen once I arrived.
On the way I passed the strangest sight. A considerable amount of blood was spoiled in the gutter and dripped onto the sidewalk. It was dark and fresh, not yet congealed. Head wound kind of blood spill. I looked around but couldn’t see anyone injured. The crowds were all rushing to get home from work, I’m the only one who stopped. There were footprints tracking the blood over the pavement. It was such a jarring sight, so unexpected and dramatic it felt like it jarred me out of sync with everything else.
That’s a familiar feeling.
I had a big reaction to the blood, similar to the one I usually have to needles. That’s new. I could see blood on my hand and my head got very noisy suddenly. I tried to conjure the soothing images I used to manage the drips in hospital recently, not only couldn’t I hold the images steady in my mind but they dissolved and transformed into drowned children on a moor. Distress compounded – the old story – a trigger, a trauma reaction, and panic about the trauma reaction. I was seriously stressed at the prospect that my needle issue seems to have spread to a major reaction to the sight of blood also. I managed to strangle that train of thought as not helpful at that point, and talked myself down out of a panic attack. I limped on to class. The sense of being out of sync persisted as did a sense of high agitation.
I bought chocolate milk and soft banana bread. Food and drink are very important for reducing psychosis! I sat in the air conditioned room and the lecture began. Unfortunately we were studying the shift from neoclassicism to romanticism and a number of the slides were highly disturbing artworks such as Goya’s war prints. I find these moving and distressing when I’m not triggered. In an existing state of high arousal they were intolerable. I was struck by how little we talk in mental health about managing agitation when that’s often the precipitating aspect of crisis. It’s despair plus agitation that’s so dangerous, mania plus agitation, anxiety plus agitation. Is also one of the experiences the mental health system is so so poor at managing. I’ve sat with a distraught friend in ER, so wired she couldn’t lie still, and supported her to pace off the adrenaline around the room. Every time a staff member came in they made her lie back down where she shuddered and twitched and moaned. As soon as they left I told her or was fine to get up and pace again where she felt calmer. Eventually she naturally wore off the energy and was able to sleep.
So I let my legs jitter and hands shake and focused on the lecturer instead of the distressing PowerPoint and contemplated whether I would be better to leave class and try and get a lift home now or less distressed to just ride it out. Rose was on standby. I stuck it out and finished class and Rose collected me. A strange split state came over me. One moment I’m entirely settled, lucid, connected, grounded, except for the lingering sense of being out of sync. The next I’m scattered, full of awareness of things I know no one else is perceiving, flashes of images, feelings like a storm. They’re distinctly different. Over a few hours the scattered state diminishes but the settled state isn’t quiet normal either. I’m restless, energised although exhausted physically. There’s a curious desolate loneliness I’m learning to associate with psychosis, I feel distant from everyone and resentful of friends who haven’t reached out. And a detached amusement that feels dark and wild and slightly dangerous.
Rose is stellar. I’ve written before at more length how I approach psychosis and it works very well for me. The short version is: Eat, drink, sleep, rest, listen to your impulses/inner voice/intuition (but think it through before acting on it), and don’t panic. Pretty much the same applies to someone playing a support role. Holding the space, not panicking, remembering what works, and talking to me like I’m still Sarah are my key ones. She also tunes in and keeps an eye on me for new triggers – psychosis is weird in that stuff that normally doesn’t impact you can suddenly trigger it. I’ve spoken with people who have smoke alarms talk to them or all kinds of strange things. Sometimes trauma links can be figured out, sometimes there’s just the strange surrealism of dreams. I’m careful around anything with spiritual, religious, or paranormal content. Avoiding is perfectly fine at this stage. Buffy however is okay for me, which is how I’m spending today. 😉
Rose and I actually had a really nice night together. I slept well with some phenergan. Today I’m exhausted and a little bored and over heated and taking it very easy. Rose is at work sending me possible baby names in her lunch break. It’s not exactly the most terrifying crisis ever. I’m eating icebocks to numb my throat and finishing the second season of Buffy. This is what it can look like, almost dull. Responsible. I’ve never lied or concealed my prodromal state. My people don’t terrorise me by taking away control. There’s trust and honesty, the kind that will make me a safe parent, the kind that make me a decent partner. We work together, and suddenly the bogeyman isn’t so horrifying after all. Such is life.
Sophie turns 2, with cake
Sophie, my gorgeous god daughter, has just turned 2. Rose arranged the gifts this year, and I decorated the cake. Rose put a great deal of thought into the collection of presents, and none was more appreciated than the mini trampoline she assembled from flat packed with only a few bruises and cursing before the big reveal. Sophie has christened it Bounce and it gets a good work out. She was extremely difficult to photograph! She’s reached that age where the only time she’s still is when she’s asleep. 🙂
I somehow pulled off 9 hours of work in total yesterday over 2 busy gigs, between exhaustion and the post surgery pain I was in no for state to bake a cake like I’d arranged. So we did the next best thing, Rose arranged a mud cake from the local Cheesecake Factory, and bought me ingredients for an excellent crusting buttercream frosting, and I decorated it this morning. I’ve not done a lot of this kind of piping work, but Sophie’s Dad specifically requested buttercream as she really enjoys it, and I’m personally a huge fan of cakes with minimal fondant ie ones that actually taste good as well as look pretty. So I decided to pipe a bouquet onto the cake. Finished with her name and sprinkled with a little edible gold glitter, out turned out pretty special. 🙂
My garden in bloom
Welcome to a sample of glorious blooms from my garden!
I’ve had the most magnificent poppies this year, they self seed and scatter themselves across the garden. I adore poppies, they’re so beautiful.
My only yellow rose ‘Kabuki’
A gorgeous purple rose ‘Lady X’
White irises, French lavender, and white daisies
Tonks loves sunning herself in the garden.
Pink hollyhocks
Nasturtiums and pansies
Rose ‘Olympia’ I think
Rose ‘Mister Lincoln’
Beautiful geranium
Lemon thyme in bloom
Red calla lily
Nasturtiums
Rose ‘Black Beauty’ – my absolute favourite!
Rose ‘Traviata’
Gorgeous ‘Black Widow’ daisy
I love my garden. It’s so peaceful. I’ve lost a couple of roses to a nasty virus and will replace them next winter. A few have yet to bloom this year, such as Lady Phelia. I’m planning to buy anemones and more irises next year, and I’m looking forward to seeing the frangipani finally get big enough to bloom… There always something to look forward to in a garden, always something that carries you into the future.
In other wonderful news, my eye sight has finally cleared up enough that I can read again. I think the past week was the longest break from reading I’ve done since I was a kid! I usually read every day and I’m much happier for it. I’ve dug out some Terry Pratchett which is suiting me perfectly. Things are looking up!
Today is a very busy day, I’m working as a face painter at one gig all day and another that’s expected to be very busy all evening. I’m really nervous about how I hold up – wish me luck!
Baby Steps
Oh gosh, today I have actually been well enough to eat breakfast in my garden, and do some work on my computer! Which is incredibly fortunate, as I’m booked into two long gigs tomorrow for work. I’ve been updating my website, sending out invoices, sending in homework for college, and catching up on emails. I’m so excited! I know it sounds crazy to everyone who hates their job and being stuck in 9-5, but I’m so, so excited to be well enough even to get a little bit back into work! 🙂
Determination
Oh dear lord, that was a hard week! 8 days post op and I’m still having trouble with the pain, but my headspace is markedly better. It’s been so demoralising to be so sick and in such pain. 😦 littered by all the ideas that haven’t worked, sometimes my future seems very bleak. I don’t want to live on support for the rest of my life but chronic illness just tramples everything I set up. So, I’m working on not failing my art classes at college, and I’ve been distracting myself by looking at pretty things on Etsy. It’s been inspiring. 🙂 I love sculpting my pendants and I’m really enjoying working in the smaller scale, which is good considering my studio space is very small at the moment.
I’ve also been lucky enough to arrange visitors every day, which has been really helpful, ditto actually getting out of the house here and there. Today I’m really excited about going to visit Sound Minds, the local hearing voices group. I haven’t seen them in ages and we set this date months ago. I’m bringing a very sad anime called The Children Who Chase Lost Voices to watch. They’re bringing ice cream. 🙂 I’m going to get through this!
Chronic pain

This is the chair where I’ve been living since Thursday. We go back a few years. I got it from eBay for $30 a number of years ago, and it’s been dragged through house moves and stashed during homelessness and followed me around all over Adelaide. A comfortable chair is desperately important when you have a chronic pain condition. Doubly so because with the fibromyalgia I have lost the ability to regulate my body temperature (this is common with many chronic conditions such as MS). This impacts me by causing deep pain in cold weather and heat stroke in warm weather. When I’m particularly unwell I move into heatstroke when the temperature is over 30, which happens an awful lot in South Australia. Many of the places I’ve stayed in only have air conditioning in the lounge, so if I want to stay out of hospital I have to sleep there through heatwaves. A comfortable chair that opens nearly flat is essential. I’ll still be horrendously unwell with fever, shakes, vomiting, weakness and so on, but under a wet sheet and if I can keep some fluids down it means managing at home which is generally much kinder to me.
I’m currently bunking in my chair because I have to sleep with my head elevated or the pressure in my sinuses gets intense and makes the pain worse, and I also have more problems with bleeding. It’s on its very last legs though, one arm has actually fallen off and is only held on by the fabric. It groans and creaks and is very difficult to put up or down… I’m half convinced that one night soon it will simply collapse under me and skewer me on terrifying springs and coils and inner workings…
I’m struggling to manage the post op pain. This morning when I found myself in tears despite ice packs and a slushie and ibuprofen, I relented and took 3 mg of codeine. It’s been enough to take the edge off and so far no hallucinations so my liver must be hanging in there.
I’m so aware of the veil of civilisation that buffers me from the anguish of my conditions. How fortunate I am to have a soft chair and a padded mattress and access to surgery and pain relief of sorts. Born into a poor country or an earlier time I would simply be a statistic, chronically ill, completely incapacitated by pain, finally killed by infection. Here and now, as deeply frustrated as I am by my limitations, I’m alive. I’m able to put some things between myself and agony, to stuff a wool lined chair and a box of antibiotics between me and the void. My life is full of relationships and books and art and using what I have to try and make the world a better place. I’m connected to my community, and I have a sense of the future. There’s so many other timelines where Sarah doesn’t make it this far. She kills herself at 10, or in a suicide pact at 19, or overwhelmed by intense dissociation, disability and loneliness at 23.
I’m still here at 31, trying to figure out how to be a good Mum with my disabilities, a loving partner, a loyal friend, an artist. My world has stopped completely while I’m so sick, I can’t manage my business or work on my assignments or visit my friends or clean my house. I live in this chair, blessed by visitors and the kindness of friends and family, utterly dependant and mostly helpless. But it is not meaningless. It is not about the limitations. I love and am loved. I’m touched by fire, kissed by darkness. Pain weaves itself through my life with the darkest of leaden threads and the brightest of red screams. I’ve also known ecstasy, wept with joy, been given gifts I can’t possibly repay, known the passion of laying with a woman who loves me, and the simple contentment of holding a child who feels safe in my arms. It’s been a full life, and I value it. Pain takes a lot away but it doesn’t take everything. It exists alongside quiet contemplation and the heights and the wilds and the little pleasures. It can be part of a deep experience of life.
I’m really good at moving house
Right? Obviously. One does however, downsize collections when trying to move a girlfriend, her cat, and hopefully a baby into one’s two bedroom unit. I’m making great progress, this is what I’ve culled so far:

Rose for her part is trying to bring with her an additional two cat trees (I’ve already got her largest one here; apparently cats need a climbing tree each), a massive 8 seater couch, and a really impressive 12 seater dining table set in solid wood with rainbow coloured chairs.
Yep, this is all going to work fine.
Phobias ain’t phobias hey
Post op pain is a bitch. The ENT was kind enough to warn me that the procedures I’ve had done tend do two pain spikes, around days 3 and 7. Forwarned is forearmed, it helps a lot if you know to expect it and aren’t panicking that something has gone wrong. Mornings and late night are my worst times, which is usually the case for any of my conditions. Peak functioning and lowest pain is afternoons, best time for visitors, appointments, eating, and uncomfortable procedures. I’m have to drown myself on a regular basis with salt gargles, sinus rinses, and sinus sprays. This is the ickiest post op I’ve ever done, I spit blood and drip pus and generally ooze. It’s truly delightful.
I’m concentrating on staying out of trauma memories as much as I can. The difference when they’re triggered is huge, my whole perspective shifts and I feel physical pain more keenly through the lens of helpless misery. I also struggle with body memories such as feeling drips and needle pain that isn’t current, I radiate distress so people are stressed and alarmed around me, and I can’t access most of my skills to manage the situation because I’m so overwhelmed by emotional pain. Humour is currently my ally! Nothing breaks the state more effectively at the moment. As I deliberately look for something absurd to focus on, I can feel myself back swimming away from a dark vortex, and color returns to the world. I don’t understand it all yet but I’m trying to pay attention and not the details so I can unpick it later because there’s something very powerful in this.
My capacity to manage the needle phobia has run out for now, sadly. This op was my first time using fentonil for pain relief, and I should be getting as blood test done to see how my liver coped with it. Unfortunately the hospital needed my bed and moved me on without follow up, so yesterday Rose took me to my GP clinic. I can be really difficult to draw blood from, phobia aside my veins are good at hiding. After several harrowing minutes on each arm the GP gave up and I’ll have to drink lots and try again on Monday. Unfortunately this means we don’t know how my liver is going so taking any codine is an unknown risk. Hence high pain levels. The techniques I used to manage the drips in hospital just didn’t have traction, like they hadn’t recharged. My hands dripped with sweat and I shook. But it was brief (ish) and I recovered pretty quickly.
When I’m back on my feet I’m going to a hypnotherapist to try and make some sense of this. There’s a lot of needles in my future! On the plus side, the progress I have made will give up somewhere to start I think. I had a really, really bad reaction to a blood test as month ago and clicked that I don’t think I do have a true phobia, rather blood tests and needles seem to trigger a massive trauma reaction complete with flashbacks. That might explain why the phobia approaches haven’t been working for me. In hospital I used visualisations based on attachment needs to great effect, and found that whenever pain spiked I could concentrate and determine what were current sensations and what were memories to be brushed away.
Anyway. So yeah, stuff. I’m taking notes and I’ll follow up later. For now I’m distracting myself with a Buffy marathon and stopping my jaw seizing by chewing licorice bullets. Tonks is being a crazy moth hunter and stalking the unit with gusto. Zoe is a total couch potato who will snuggle with any discarded clothes, socks, or, if she can find him first, my stuffed lion toy. Good company!
Now THIS is sexy
My girlfriend thinks I’m sexy
Pain, & truth, & holding onto the stories that heal
I don’t much appreciate the hedgehog that’s living in my throat, and whoever sneaks in while I’m sleeping to stuff skewers in my ears and glue in my sinuses is not on my Christmas card list. Ah, post op, that unique combination of pain, boredom, and day TV. I’ve still got laryngitis which fortunately Rose thinks sounds sexy. I’m sure that helps with the regular top up of slushes!
Have an out of sequence blog post I wrote before going in to hospital. I’m not coherent enough to edit so I take little responsibility for the content.
I’ve had some lovely responses to my recent post Fear, grief, & chronic illness, telling me that other people too, don’t always find a positive approach helpful, that letting their pain speak limits its destructiveness, or that hearing my own vulnerability is in some helpful. I so needed to hear that.
I try to keep this blog as real as possible and sometimes that feels like an endless task of painting pictures of myself and the way I see the world, then pulling them down again to paint another one that’s more complex or shows something different… and I feel this suffocating pressure to only show the successes and the positive, or only share the pain after it’s been digested and finished with and turned into something palatable… it feels both incredibly vulnerable and somehow deeply urgent to defy these pressures, like fighting upwards through water to get to air where I can breathe again. But the water constantly rises and the struggle is often present for me. I don’t know if that’s a function of my culture, of the way social media works, or of the mental health culture… perhaps it’s a little of all three?
Certainly we fear pain because we’ve turned intense pain, even grief, into mental illness, which means you are not well and should do things to become more well. Intense pain is at times necessary, needed, appropriate. A rational and human response to life. Add to this the pressure of peer work where you are supposed to show that you are now ‘well’ and provide hope for others by successfully remaining well. Social media can be a fantastic vessel for connection, but it also comes with pressures and vulnerabilities. People sculpt their online image with the attention of a company to their brand. They live in fear of the enthusiastic judgements and criticisms of public life, and they try to show their best side and most successful parts of life. The reality of their self and life becomes increasingly divorced from their public image. Often they police other’s sharing also, shaming those who express hurt, confusion, loss, or other ‘private’ emotions and experiences. This is not to suggest that people who prefer not to share deeply personal things or distress on social media are wrong or deceptive, merely that people draw the lines between public identity and private self in different places, and that a competitive culture of presenting a successful public self can be difficult to navigate. The lines between authenticity, duplicity, intimacy, and privacy can be a challenge to determine. Ultimately, most of us want a sense of connection but fear of judgement and hope for respect and admiration can be big obstacles.
Back to navigating pain. It’s not a complicated concept – go down into the pain and hear what you need and do it, and it will ease. And yet I find myself over and over again losing this approach, forgetting that it works for me, and I never hear it from anyone else. When I’m struggling responses range from the positive thinking to the hang in there, and there’s nothing wrong with that – people share what works for them, or what they think may help. But I never hear – go deeper into the pain, stop avoiding it, downplaying it, ignoring it. It’s real, it counts, it needs attending to. Surrender to it, and it will pass through you and ease. Over and over again I stumble onto the discovery that by letting go from the cliff I’m hanging from, I don’t die, and the world doesn’t end. I fall into it and it hurts and I come through it. I still haven’t found any way of fixing this knowledge into my mind or life.
I think this one of the biggest challenges of having a belief that doesn’t have a lot of cultural support. Sometimes the process of undoing one belief and building a new one feels like I’m deprogramming from a cult while I’m living in the next town over. It’s really hard, and there’s plenty of triggers around that reset my old beliefs so I have to wrestle out of them all over again. I think anyone that’s come through any kind of abuse, particularly entrenched in the local culture (school, family, church, club) and minimized, struggles with this vulnerability. You are given stories to understand yourself and your world that do you harm, but that on a deep level you continue to believe and fear may be true, even when you’ve decided that other stories are more accurate. Contact with these old stories (being molested isn’t ‘really’ sexual abuse, kids only cut themselves for attention, you’re a drama queen, you’ll never amount to anything, all mothers adore and do right by their children) can either trigger a major response – kind of like an immune response, or sneak in under your guard without you noticing. In the major response, you encounter a foreign story and you are half infected by it and half fighting it off. The more vulnerable you are to infection, the more dramatically you fight, and the more internal struggle you experience! The other option is much more subtle, a slow insidious poisoning where the story seeps in and takes hold and becomes your own without you noticing or putting up any kind of fight. Weeks or months later you find you’ve taken on their perspectives “I’m useless and lazy and never try hard enough” or internalised their ideas “I’m only bulimic, if I was really dealing with an eating disorder I would be anorexic” and are starting to live from them as if you believe them.
It’s so hard! It’s made even harder if you have little support for your new stories, if you are in regular contact with people who believe and push the old stories onto you, and if they have any kind of power or authority over you. Other things that can make it harder to keep your own beliefs is if you don’t really believe your new ones (eg. trying to use over the top positive affirmations “Every day, in every way I am getting better and better” can be a much more vulnerable position because the new stories are so unrealistic and unsophisticated with no room for back steps or grace for human flaws or bad days, that every day life can constantly provide you with enough evidence that your stories are not true that you are forced either into constant internal conflict or severe denial to maintain them). Self loathing and self doubt, which obviously spring from particular stories about yourself can also make this process more difficult as they naturally undermine all your other beliefs and endeavours and make you prone to hearing bad things about yourself as true and good things about yourself as untrue. A lack of emotional skin, which can be about trauma but is also often related to social power – the less we have, the more important others opinions become for our survival, also increases our vulnerabilities to living according to other people’s stories, and often these stories suit the other people and not ourselves.
This is where I come back to authenticity, and to the idea of truth. Truth is often complex, and we like to boil it down. We try to sum up our childhood, our relationships, people we’ve known, as if we could weigh the good and bad on scales and come to a definitive number. The reality is that this process obliterates and obscures truth. Finding truth is not about boiling down but about opening up. It doesn’t sum up all the complexity in a neat conclusion, it lays each piece next to each other, side by side, not over lapping. A simple example: my childhood was terribly painful. I was devastatingly lonely, witnessed violence and abuse, was traumatised by death and loss, suffered chronic suicidal impulses from the age of 10, and struggled with nightmares, self hate, guilt, grief, sexuality, gender identity issues, bullying, undiagnosed multiplicity, severe dissociation, and major trauma. That’s one story. It’s all true, all verifiable. My childhood was also wonderful. I was given free reign to be incredibly creative and adventurous, taught skills and resilience, offered freedom to explore rivers, climb trees, sleep out on the roof, light and cook my own meals on fires, wear wild clothes, explore artistic pursuits. I saw deserts and mountains, swam in icy snowmelt rivers, watched a meteorite shower, built a hay bale cubbyhouse to sleep in, stayed up late to watch lightning, nursed an injured baby goose for months in the pocket of an apron, ride motorbikes and go karts and beach buggies, go rock climbing and abseiling outback, bucketed hot water into a bathtub once used for stock feed in a paddock, and had a hot bath outdoors in the rain with my sister. This is also all true. People often try to ‘sum it out’ as if the good might outweigh the bad or vice versa. I’ve found that when one story obscures the other, I lose some important truth. It’s not or, it’s and. My childhood was wonderful and painful. It’s headbending, but its a key skill to be able to tolerate the tension of more complex stories like this, because single-note stories, black and white stories, often distort and conceal some truth that we need. There’s freedom in the contradictions.
Hanging onto them, even when they’re as accurate as we can craft them, as undelusional, as informed, as balanced as we can manage, can still be tough. This is where good therapy can build you up and be another voice of support (“I know your father says that you’re weak for being raped, but I also know that’s not what you believe and not how you feel about other people who’ve been raped”), or conversely where bad therapy can take your head apart (“You are manipulative and faking your issues for attention”). I also use a number of other sources of inspiration. My favourite artists adorn my walls, I reread my favourite books every year and own the movies that inspire me and inform the stories I choose to tell about myself and my life. For me, it’s about poetry, about heroes like Cyrano de Bergerac, Bradbury, Amanda Palmer, about the love of children, about all the things we use to anchor us in our beliefs and weather the tides that pull us off course and plant traps in our minds.
I’m alive
Rose has just left for the night. I’ve come through the surgery! My lovely visitors have bought beautiful gifts and made me smile far too much for someone with stitches in their face. The pain meds have stopped working very well which probably means my liver has had enough for now but it’s tolerable. I’m full of lines which keep blocking up but a new approach to the needle phobia is keeping things reasonably quiet inside. All in all, I’ve felt better, but I’ve also felt a lot worse.
Buoyed and touched and grateful for all the mad lovely people in my life wishing me well or reaching out to support Rose (who has been AMAZING). Rocking the orange eyebrows and tampon-on-face/world’s weirdest mustache.
New sculpture – Tree by the ocean
Hand sculpted PMC, set with a large labradorite cabochon – said to be the frozen fire of the Aurora Borealis, and three geniune seed pearls. Hand painted with acylic and strung on cotton cord.
I adore these. I’m thinking of opening an etsy shop when I’m feeling better… 🙂
Off to surgery!
I’m off to hospital at 9am tomorrow morning, for several hours of surgery on my sinuses and removing what’s regrown of my tonsils. At least, that’s the story at the moment. Apparently some people are being cancelled even after waiting in the hospital in a gown and slippers for several hours, so I won’t really know it’s going ahead until I’m wheeled into theatre.
I’m nervous. We’ve got the best ‘coping in hospitals’ part around, ready. Anaesthetics scare us, always afraid one day we won’t wake up. Resisting the urge to write wills and try to have all Christmas presents prepared, just in case…
I’ve scheduled a few posts for the week here, so there’ll be content happening, but maybe not updates for a little while.
I keep remembering things I meant to do before hand. 😦 I have been feeling a bit better today, and I’ve been able to sweep, mop, clean the bathroom and toilet, and finish some hand made gifts. I started the day playing with Tonks in bed, this is her favourite toy, it’s a tiny turkey on a string. Rose often does this, and it’s a cool idea. Ever since doing some intense processing around attachment, things have improved and I’m connected to and enjoying the company of my pets at last. 🙂
There’s so much I want to do. Art projects are calling to me and the garden needs some fertiliser and I want to finish a business project and the essay that’s due next week… and I want to snuggle up in bed with Rose and talk about our family and tell her how much I love and admire her and how glad I am to be with her.
Hope I’m home again soon!
Fear, grief, & chronic illness
I’m scared. I’m really sick, again, or still, depending on where we draw the increasingly fuzzy lines between one sinus infection and the next. The doctor I saw today confirmed I have laryngitis as well, and was worried I will not be well enough for my scheduled surgery this Wednesday. We’ve added steroids to the antibiotics and prescription for rest and fluids. With a present infection I’m also running a much greater chance of post op infection. I’ve experienced that before, severe secondary infection after having my tonsils removed at 10. I’d prefer not to do a repeat!
It’s hard to keep my spirits up. This week was set aside to get everything ready for my recovery period post surgery. I wanted to mop and clean and make sure there was blended food in the fridge and take as much of the load off Rose as I could. I also wanted to get my library books back, and finalise the essay and tutorial due next term in case recovery knocks me off my feet for longer than expected… So much for those plans.
I’m in a vulnerable place with my business. I’ve just emptied out the beautiful studio we had to close. I let a good friend down. I never even put a launch together for it. Everyone was really enthusiastic about it, but not enough to visit. I was sick and busy. Another learning curve, another failure. Something else to keep me up at nights. I’m so sick all the time. How am I ever going to make any business work? I keep trying. I’m working so hard and it’s just not enough. ‘I hate myself’ is a constant quiet drone in my head. There’s always so much fodder for it. There’s too much against me.
I’ve added mental health to all my promotional material but not had a chance to launch that side of the business yet to generate some work. In the meantime, my face painting business which was getting really busy has gone frighteningly quiet. The booked and cancelled surgeries are costing me work with long term clients, my bread and butter relationships. And maybe I’ve made a terrible mistake and people are too frightened by the new marketing to hire me. It’s too early to tell what’s costing me the most, I have to wait for surgery to be done then reassess, because the illness and hospital will keep destroying anything I set up in the meantime. A small business like mine is so vulnerable to any perception of unreliability. I’m so replaceable. My sickness is tearing apart everything I build.
So, hopefully, after I recover, I’ll find that place of hope again and keep building, and something worthwhile will come from all this hard work and heartache. And if I keep being sick, I’ll have to change it all again. Move to product creation instead of service delivery, something I can do even if my health keeps crashing. I’m so tired and so discouraged. 😦 I’m doing everything right and it’s not enough. If I could just disentangle the grief and self hate and overwhelming sense of failure and the gap maybe then I could breathe.
This really hurts. It’s like being down the bottom of a deep pit. It’s so painfully lonely. I know other people handle their pits with positivity, or that other people have deeper pits, but somewhere in claiming the right to my own pain and fear, to name it and call it what it is, to express some of the bitter disappointment at how things work out, I find strength. It’s my story. I don’t need to compare it to anyone else’s, I don’t need to win some ‘tragedy of the year’ competition to feel hurt, I don’t need to handle it in some publicly approved way to have the right to be hurting in public or to reach out.
The funny is, when I let myself own my pain, the loneliness eases a little. The gap becomes a thing I can navigate again. I can find humour, wear the loss a little more lightly, present the face of disability the world tolerates better – articulate, insightful, optimistic, discrete. Carve myself some space to grieve. There’s so much grieving in sickness.
Toe kisses
I’ve been waking at around 5 – 6am every morning for the past few months, which is incredibly frustrating. I’ve started using phenergan on nights when I don’t have to be very awake the next morning, which is helping although often leaving me feeling drowsy and dazed the next day. If Rose is sleeping over that night I’ll roll over and carefully snuggle up without waking her. If it’s warm or she’s already only lightly sleeping, I’ll usually gently put out a foot until we’re touching toes. The contact often reduces my anxiety about not sleeping and helps me get back to sleep.
This morning I reached out a foot and then realised Rose wasn’t sleeping over. Tonks however, was snuggled at the foot of my bed, and more than happy to kiss toes until I fell back to sleep. 🙂
Hello from the couch
Snuggles
Today Rose and I had the pleasure of heading out for a day with her three nieces. Rose has been incredibly blessed to have so many gorgeous kids in her life, although of course this had also been painfully bittersweet at times of her own pregnancy losses. I’ve lost or walked away from almost all of my social networks and found myself in a painful vacuum where kids exist only as a kind of abstract ideal, a hole in me that aches and make me cry in the baby aisle at supermarkets. Now I have an absolutely beautiful goddaughter, Sophie, whom I adore and who is about to turn 2, and I’m also getting to know some of the wonderful kids in Rose’s life. It’s a huge privilege. The kids reactions range from dismay at sharing their Rose with me to delight at a new interested adult. The face painting is of course a pretty decent bonus.
Today I have yet another sinus infection and bout of tonsillitis, but dosed up with meds and we all went out on a trip to a petting farm called Hahndorf Farm Barn. It was a great day, the baby chickens were a particular favourite and I think between us we cuddled every one there at least once. The kids also patted a snake, milked a cow, snuggled rabbits, fed kangaroos, and got a little spooked by the emus. At the end of it all we wiped out and I got cuddles on the couch at home from miss three. There’s really no greater vote of confidence in your hopes for parenthood than trust and affection from a child who has plenty of other loving adults to hang out with. 🙂
Absurdity is a gift
It’s been an exhausting week. Far too much bad news, challenging situations, and friends and loved ones under massive stress. Today, Rose and I were both fragile and depressed, with little left for each other. I collected her from work after a day of discouraging medical appointments and dull errands, and we drove home both in tears, at the end of our tether. We had friends visiting for dinner, so before they arrived we took a moment to touch base. Either we were going to reconnect and pull off a wonderful evening, or snap at each other and deepen the strain. We were able to sit with the triggers and hear each other and found as the tension lifted that our natural crazy sense of humour returned. We spent a wonderful evening playing board games, making jokes, and pulling silly faces at each other. In bed that evening we mused- we’d somewhat lost our humour lately. We had times of deep & meaningful conversation, or companionable connection, or heavy duty trauma territory, but it felt like it had been ages since we’d made each other laugh. What a gift it is, this simple thing. What a miracle that the world that weighs so heavy can be lifted by a laugh. Suddenly the road doesn’t seem so long or the night so dark. It’s the most simple and joyful form of mindfulness I know. It’s not about the destination, it’s all about the journey. There’s no better answer I’ve found to the scream trapped in the throat and the waiting for better years.
When have you last laughed? When have you last felt yourself step sideways out of crushing anguish and found the pain can make the humour sharp and black and driven and surreal but no less funny and no less freeing? I hope you disturb sleeping people and burst stitches and cry from the corners of your eyes and get a stitch in your side and blow chocolate milk out of your nose and gasp for air. I hope the absurdity of life helps you put down big rocks of pain and grief and play for a little while and pretend to be someone who isn’t dying inside, isn’t frozen by terror or crushed by pain or tortured by memory. And if you don’t have someone to play with, don’t forget that phones can record your silly faces and funny voices and baffling walks. Sometimes laughing is the bravest thing we do.
Drawing – ‘After’

Mixed media drawing made in art class, primarily charcoal. We’re experimenting with different ways of layering and building up images. I like the ghostly landscape behind the charcoal one, it seems surreal and dream like to me. The whole work turned out surprisingly reminiscent of a landscape after bushfire. This process way of creating is very alien to me, I generally know exactly how I want something to turn out when I start an artwork. There’s something to be said for exploring and being surprised, it’s liberating.
Families, abuse, & hope
Political systems have always been a facsimile of the predominant family dynamics
–Parenting for a Peaceful World, Robin Grille
I’m about halfway through this incredibly challenging book. The most difficult and interesting part has been reading through a brief history of different approaches to children and child raising. The brutality and disconnection is truly horrifying. At one point Grille notes that the hysterical dissociation cases so common in the Victorian era are far less frequent now, probably due to very different child raising practices. Yet, I work with many people who’s childhood experiences were neglectful and abusive in probably very similar ways. Each family is like a tiny culture of its own, a mini country with its own customs and political structure. It’s interesting to also consider the reverse – looking at complex politics through the lens of a family. The same questions that can be useful to consider on the small scale are also relevant on the large – who exercises what kinds of power, and how? What is the cost of being the least powerful, or out of favour? How safe are the most vulnerable members?
Rose and I are talking a lot about families at the moment, as we plan our own. I find it interesting that our broader culture structure is capitalist, while our private family structure is closer to socialist, with much unpaid labour and sharing of resources. There’s a tension as we move between these frameworks in public and private spheres of our lives. So we have significant labour such as child raising, or caring for family who are sick, disabled, or frail aged, going largely unrecognised as they have neither job title nor a decent wage attached to them. Family power structures can be fascinatingly complex and subtle. Those who are obviously in power are sometimes only figureheads. Oppressed and brutalised family members are often the most brutal themselves in their enforcement of family traditions and rules. Families create their own mindsets, a framework through which members learn to view themselves and the world around them. When this framework is destructive, “You’re an idiot and you’ll never amount to anything”, “The world is dangerous and will eat you alive”, it takes massive effort to mentally and emotionally challenge these beliefs, break free of their hold, and construct new frameworks. Children basically grow up inside the ways their parents view the world. Many adult children of destructive families find that while they are trying to find their power to built and maintain their own beliefs, they are highly vulnerable to having their frameworks ‘switch’ to those of the family culture whenever they are anxious or in contact with them. Some families navigate such challenges with growth and new connection, others have harsh, rejecting, or even violent responses to what is essentially a war of ideologies. It can be a big challenge to maintain an individual perspective that does not mesh with the family perspective.
A task I once found incredibly helpful was to sit down and nut out the ‘rules’ of my family of origin – not the spoken ones, but the actual way we functioned. Sometimes these align, sometimes they don’t. This isn’t always a bad thing – in the case of a family with avowed ideals of patriarchy or harsh punishments, the reality may be modified and softened by genuine affection and care. No family gets it all right, and many have a combination of generous and altruistic practices mixed in with selfish and cruel ones. Those who have been raised with harsh practices may enjoy ‘their turn’ at exercising power rather than dismantling the abusive structure. But the process of deliberately choosing to observe the dynamics, to note the rules and the roles was extremely helpful for me. For example, many families have a role – the ‘lightning rod’. Whoever is in this role is available to be put down, made the butt of jokes, talked over, doesn’t get to make choices, gets less access to family resources, has to do the worst jobs or so on. This person is targeted as the source of family stress and they are available for the most powerful (not necessarily physically, but politically) family member to work out their frustration on. In some families the lightening rod is always the same person, in others it’s a shifting role as people go in and out of favour. In some families, being able to discharge tension in this way is the sole prerogative of the most powerful member, in others everyone must show their loyalty by treating the out of favour person badly. Sometimes there are factions and more than one lightening rod, with vulnerable members trying to maintain neutrality across all the teams and not find themselves in the least favoured role.
It can be useful to ask questions such as “Who gets their needs met?”, “Who has the most powerful vote?”, “Who’s plans get disrupted when something goes wrong?”, “Who does the most jobs they don’t like?”, “How safe is the least favoured family member?”. And then comes the most interesting part – how would you like your family to function? What rules did you wish your family really worked by? Many of us with challenging upbringings want to do better and can eloquently name the things we hated that hurt us badly – shaming, beatings, emotional detachment, poverty, and so on. Figuring out what we don’t want to repeat can often be much easier than figuring out what we’re going to do instead. For me, one of the things I really wanted my family to be was a nurturing place, somewhere it was safe to come home to when you were sick, hurting, anxious, or had failed at something. I want it to be normal for family members to be kind to each other, to help each other out, and to listen to each other. I sat down and nutted out a bunch of other values and ideas that are also really important to me. I found that they were pretty similar between family and friends too.
The next thing I found helpful was to start acting as if these values and ideas were normal in my family. Instead of instinctively obeying unwritten rules, I chose over and over again to operate from my own values. In my case, I had to do this with my eyes wide open because sometimes the results of breaking these rules were violent. People are often very invested in ‘the way things are’, even if they are suffering under it. Sometimes there’s a lack of hope, sometimes people are trapped by beliefs such as ‘If I was just a better person, everything would work out’. It can take time and coaxing for people to see that there is freedom and kindness possible in change. For those the current dynamics suit – those who are getting most of their needs met, or are comfortably placed within the power structure, or are so entangled with their own demons that they need a painful and chaotic environment around them – the protests can be intense. In some cases, change can expose people to life threatening consequences. This is one, of many complex reasons, that abused partners stay in relationships where they are suffering terribly.
Obeying abusive family dynamics will almost always require a person to violate their own morals and beliefs in some way. It might force someone to be a bystander when they find that intervening makes the situation worse. It might be that blaming and hurting the most vulnerable family member was the only way to be safe. There are often complex trade-offs where children may submit to abuse in the hopes of protecting their siblings, wives to rape in the hopes of protecting children, men to beatings in the hopes of protecting the women and so on. A complex network of attempts at self protection and protection of other family members often results in deep shame and a sense of failure. People in this position are embedded in the family dynamics and take on a sense of responsibility for them. With shame and guilt eroding their confidence in themselves, deep beliefs in their own worthlessness and incompetence, and a powerful and justified fear of the consequences of breaking the rules, it takes extraordinary means for people to start building new frameworks and escaping old dynamics. In some cases people will be harassed or rejected, in others they will be beaten, raped, or killed. In many situations I’ve observed, those who protest these changes do not even understand their rage, there is simply for them a sense that they are less safe, and they use whatever power they have to make themselves feel safer.
None of us is immune to this dynamic, and any of us who exercise any kind of power must consider this if we wish to handle it ethically. Even good intentions can take us down bad roads when we run solely on instinct and the desire to be safe.
The good news is that even the tiniest of gestures to break away from abusive dynamics start to generate a sense of identity and personal power. Within even profoundly abused people, a will to survive and to maintain identity is extremely strong. The entire ‘child abuse survivor’ movement is testament to that – as are the statistics on people – including children – who flee abusive families. While most will return more than once, within the deep conflicts of fear, hope, despair, and bonding, a desire for freedom remains intact. It may not be the most powerful voice, but it is still present. In violent families this change might be done entirely in secret – public obedience, but private kindness. It might be sneaking food to the child denied yet another meal, it might be covering for someone so they don’t get punished. Even secret collusions erode abusive power. They create a sense of personal agency that obedience to the rules takes away, and with that agency comes an awareness that you can and do disagree with what is happening. Environments that strip us of power and choice also reduce our possible responses to two options – we can comply, or we can rebel. In situations where the cost of rebellion is unmanageably high, most people will comply. In situations where the price of compliance is almost or is as severe as the price of rebelling – most people will rebel. Many of us actually alternate between the states, often instinctively trying to find a mid-line where we get the benefits of compliance such as approval, access to resources, protection from violence, some affection, and the benefits of rebelling such as freedom, the opportunity to connect with people outside this dynamic, and a sense of personal power and identity. Like abusers who do not understand their rage when change threatens, most of us engage both submission and rebellion instinctively and are confused and frustrated by our own drives for both.
Being able to truly disconnect from abusive dynamics is about being able to make room for a response outside of the submit/rebel dynamic. Some families (and other institutions for that matter – psychiatric hospitals spring to mind) make this extraordinarily difficult because every action of the members is conceived in a black and white framework of loyalty/disloyalty. They are for us or against us, they are one of us or not one of us, they are a good kid or a bad kid. For me, it helped to be aware of this framing of my choices, and not to mind them. While I engaged conversation about them, I did not initiate them, and I did not expect to persuade anyone. I simply identified what I wanted and acted from that. I wanted a family that was fair, so I resolved to treat members fairly, irrespective of whatever else was going on. This meant my actions were constantly misconstrued, because of course everything I did was interpreted through the framework the family was using. If I gave a gift to a powerful family member it would be assumed I was being compliant and currying favour, if I gave the same value gift to a disgraced member that was likewise a political act. This constant misunderstanding is often exhausting and debilitating to those who are trying to change the way they engage, and if their goal is to persuade people to a new framework, they can become deeply discouraged and give up, or increasingly defensive and get into massive rows. In situations where the stakes are high it’s important to be aware of the politics without subscribing to them. If an act could put you at risk of violence, homelessness, loss of job, custody, or other catastrophes, acting without thought for consequence is foolish. This process of being aware of possible or probable consequences can be immediate in some cases – “Father has always said if any of us drop out of school we’ll be kicked out of home” – in others it’s a slow process of observing the ways the stated rules “In this family we all love each other” and the actual rules “We don’t talk about your brother since he outed himself”, differ. Processing the reality when we’ve been fed a lot of lies and spin can be extremely challenging and confronting, and people are good at obeying unwritten rules while paying strong lip service to the written ones.
However, the freedom to choose your own response is powerful. Instead of merely reacting to what is present, you actually bring into being a new framework of your own, and live from that as best you can. This might cause minor friction or it might involve running to shelters and setting up new homes in new cities. Some of us pay much higher prices than others. Even with the best of intentions, you will at times fail to live up to your own values and standards. But the more you have set them for yourself instead of having them imposed upon you, the more congruent your beliefs and actions become, and the less internal struggling and weakening of identity occurs. It’s a powerful, gradual process, where the first tiny act can be nightmarishly difficult, but each subsequent one a little easier. Instead of being a pawn for the use of the more powerful, you become a player in your own right, exercising freedom of choice over your own actions and accepting the prices if you think they are worth paying. This may be profoundly unfair, involve intense grief and loss, and it can be extraordinarily difficult to maintain a minority perspective in the face of massive opposition or total indifference, but it can be done, and the gains are massive. Being able to have complex, deep, authentic relationships instead of living under the yoke of roles is an amazing experience. Claiming freedom to create a life that is personally meaningful is profound.
Learning to see the giants of our childhood as people who themselves live with the ghosts and shadows of childhood, is a perspective we can only reach when we have somewhere safe in our heads to stand. It can help move us away from attraction/repulsion, submission/rebellion, and into a place where we can see the people behind the roles. This is a much safer place from which we can feel the compassion for vulnerability and loss that may previously have trapped us or exposed us to harm, or likewise the judgement of narcissism or brutality. We can be freed from the black and white thinking where we can perceive only with compassion or only with judgement, which means our actions are more informed by the whole complexity that makes up a family, and less the instincts of ourselves as a stressed child. It can be the start of breaking away and getting out, or the start of reconnecting and making something real – or sometimes both at the same time.






































