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.

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

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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.

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!

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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

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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.

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. 🙂

2014-10-07 08.51.45-1There’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.

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.

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.

Finished pendant: ‘Vision of motherhood’

Today was a rare day. We had terrible nightmares and someone woke to an unfamiliar world. We live so much in the day at the moment, our strange poets have been pushed into the shadows of life. Full of intensity and desperate to make art, she tried to stay out but couldn’t shake the sense of displacement from being out in the day. Rocked in their wake we reached for stillness and tried to listen closely.

We worked through last weekend so were due a day off. We decided to stay home and hope to make art. We’ve been severely blocked, not short of ideas but unable to create, overwhelmed by an appalling inner presence who dominated and destroys the process. All our efforts to work around or reduce the impact of this introject have been unsuccessful. We’ve made no art unless required since our friend Leanne died and we sculpted a pendant in her memory.

Somehow today we found a way through. Someone turned up who is silent and who listens to silence. All through the day we didn’t speak or play music or do admin or touch Facebook. Out on our island another world descended and the block was left behind. We cleaned up or studio space until we could function in it, and then spent the day sculpting, painting, and carving. We painted the pendant we’d made for Leanne. It’s burnished silver which doesn’t photograph easily, with swarovski crystals, a pearl, and paua shell. I’m very proud of it, and deeply relieved to have found some way to create again.

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Do you need a ‘DID expert’ therapist?

This is an assumption I come across a lot. People with dissociation or multiplicity are supposed to need extensive, painful therapy, by an expert in the condition, to stand any chance at a decent life. Hogwash!

First, the caveats: can therapists be awesome? Oh you bet your last cup of coffee they can! Can experts who have trained highly in their field, who are passionate and informed, be a huge damn relief to talk to and learn from? Hell yes. I’ve already written a little about what the point of therapy is and how to recognise good therapy.

Having said that, I tend to beat the drum of ‘you don’t need a shrink to have a life’ quite a lot for a person who sees shrinks. Why? Isn’t this ridiculously hypocritical of me? Do I just not want to share my shrinks? Well, it goes like this. I used to see shrinks because I was scared and overwhelmed and had no idea what the hell was going on in my head/relationships/life. It was SCARY. Super scary. I was terrified of everything about the process and used to sit frozen on my allocated seat, hanging on every word uttered by the shrink who was almost godlike in status and had the power to uplift or doom me with a word. I discovered over time that the idea that psychiatry is a science, that diagnosis is an accurate and sensitive tool, and that shrinks are infallible and highly knowledgeable about the complexities of life and how people work on the inside is pretty laughable. I collected diagnoses like some people collect shoes. Pick your shrink’s speciality, pick your diagnosis. I’ve seen a lot of shrinks over the years. Some have been great, some have been average, some have been horrible. Most have been at least a somewhat mixed experience – partly helpful and partly not. Horrible shrinks have been as much, if not more of a threat to my mental health than other horrible people in my life.

Going off to see shrinks meant I had ventured into a world that was selling me a bunch of ideas about myself and my life such as: I was sick. That someone else’s ideas about me (after a 45 minute conversation) were more accurate than my own. That all shrinks should be trusted, immediately, and any reluctance or failure on my part to engage in that proved that I had problems. That massive power imbalances in relationships are helpful for people with trauma/abuse backgrounds. That having a good shrink is the most important thing you need in order to have a decent life after crap has happened (not friends, or housing, or access to a really, really good library, shrinks). That I needed ‘expert therapeutic help’ to be able to function. That I needed someone in my life who could take control away from me and put me into hospital. That multiplicity meant I was broken, damaged, or in some way inferior to other people. That someone else can heal my pain. That my history and pain is about my choices and my reactions rather than a broader social context. That my suffering is caused by a random breakdown in my brain.

I haven’t found any of these ideas to be at all helpful. I see shrinks now, because I value having a safe place to talk about really tough or very personal things. I love to team up on thorny issues, to pick their brains about information I don’t have, and to explore difficult territory without shame. I do the same things with some of my closer friends.

I don’t give shrinks any power over me. If I disagree with them, I argue. If I’m not happy with their approach, I leave and find someone else. If they’re ignorant, narcissistic, or in some other way a person I really don’t like the idea of spending an hour with, I don’t hang around and let them start playing with my brain. I run the show. I choose who, when, and how to engage. My shrinks don’t cure me. They join me in my process, or they get out of the way. I employ them to help me achieve my goals. They are equals on an exploration, they are not a surgeon with a patient waiting numbed beneath the knife. Am I discounting their skills in describing them this way? No! It takes a lot of skill to be an explorer. Any old hack can cut into a vulnerable person, and every other bugger is convinced they can run anyone else’s life better than they can. But exploring? Now THAT takes skill. You have to be able to not know answers, to explore new territory, to listen – really listen, to be equally vulnerable and human, to be able to be present in the face of pain, to construct theories and ways of understanding the world, and be willing to turn them inside out when they don’t work. Good shrinks are highly skilled, wonderful people, and I love working with them. I’m aware of the context of the relationship – that is, the ideas embedded in psychology/psychiatry/counselling etc that I disagree with, and I make efforts to prevent them from taking up residence in my brain.

Frankly, interacting with shrinks takes a lot of skills, and this is often not acknowledged! You need to be able to tolerate the power imbalance. You need to be able to assess them for safety. You need to able to walk away from the bad ones. You need enough assertive skills to be able to give them feedback about their approach. You need enough articulation to be able to communicate with them. You need a whole stack of courage, a whole huge stack of it, to actually make therapy useful by being willing to get into some tough stuff. You need the ability to be able to keep seeing the shrink as a human being – either when you feel dependant on them, or pissed off with them, or really excited about them (or in love with them), it really helps the whole process if you can not turn them into angels or demons in your brain. (in some therapies, I grant you, that is the process) Basically, you do a lot of work! In fact, there’s a tenant of therapy I love which is ‘Never work harder than your patient’. The person who does the work, has the power. As imbalanced as the relationship is, it is still a relationship. Some of us are better at eliciting useful responses from our shrinks than others. This is also a skill. You also need to be able to grieve everything your shrink is not and cannot be for you, that they can’t be your parent or partner or lover or take away what you’ve come through. Sometimes this grief is so intense it overshadows every other aspect of the relationship.

Therapy is not useful for everyone, and not useful at every point in life. Even the very best therapy. Nor are support groups, or books, or meditation, or almost any approach to pain except keeping on breathing. Therapists are human. Even the best ones make mistakes, have areas they don’t know much about, or use frameworks and ideas that get in the way instead of helping. I’ve learned a lot from the good shrinks I’ve seen over the years and I really appreciate that. But no shrink has had all the answers or all the skills. I’m glad I’ve seen a few, as frightening and stressful as it was to lose or walk away from a good one. It’s been liberating to discover that I can find new good shrinks and get something useful from their different approach, and that I can cope without a shrink and look after myself.

I’m often contacted by people who are frightened they can’t navigate DID without a shrink. A good shrink will help this a lot, yes, but no shrink is way, way better than a bad one. If bad ones are your only options, get the hell out of there! It’s messy, but frankly, so is therapy. If you think trying to make sense of DID on the back of your book reading, some rudimentary peer support online, and a lot of slowly learning about yourself is really hard, then spare a thought for all the people dealing with involuntary hospitalisations, parts who hate the shrink and go berserk whenever an appointment comes around, and littles who bond to them as if they’re parents and are heartbroken when they can’t come over and hug them after a nightmare… it’s not all roses! Having another person involved with your system can be tremendously supportive, but it’s also a whole additional person with their blindspots and history and reactions and crazy ideas to deal with.

I’m often asked what kind of therapy is best for DID… and I can’t answer that question because there is no therapy for DID. There are a bunch of therapies for people. Some of them help shrinks to be better, more courageous, more patient and inspired shrinks. Some of them have frameworks and approaches that are more useful for more people. Often the type of therapy is way less important than your relationship with the shrink. Some of the most useful therapy I’ve had was counselling through a sexual health clinic, which has nothing to do with DID and yet – conversations about shame, development, desire, abuse, power, and love – everything to do with DID!

Experts are also often not all they’re cracked to be. Being an expert in something sometimes means it’s hard to see everyone as new and different. You get used to seeing the same patterns and using the same frameworks. You have blind spots, which over time you become less and less aware of. What was once a guide, over time hardens into dogma. As an expert therapist, you speak with authority, so less people turn up in your office and contradict you, so you don’t get exposed to new ideas. People get used to your ideas and approach and don’t feel like spending money to sit in a room with you and be told their approach is wrong. The expert position can be an ego boost, and a pretty comfortable chair to sit in. Dismantling it from time to time can take a fair bit of energy and courage. Great experts do this! They are proud of their work and passion and history with the topic, but they wear the label of expert pretty lightly, and they keep in mind that none of it outweighs the expertise in their own life of the person sitting in front of them!

One of the psychologists I saw for a year had no expertise in DID. I spent about the first 6 sessions having to reassure her that this wasn’t a problem. As I said to her – you don’t need to be an expert in multiplicity – I am! Sometimes there’s advantages to learning with a shrink, because you find and fit frameworks to your experience, instead of the other way around. Good shrinks that don’t know anything about multiplicity but are willing to engage it anyway are worth 100 experts who don’t click with you, listen to you, or understand your unique quirks.

So, by all means, go hunting for a therapist if you want one. 🙂 Look for someone who has heard of the word dissociation, and who can spell it… But don’t panic if you’re among the masses of people who can’t find this, or can’t afford it. You have lived with this a long time! You have a massive store of wisdom within you, and clearly, a will to survive. And if you’ve found someone good but totally out of their depth – great. Go exploring together. Don’t believe everything you read, try stuff out, be open to new ways of thinking about things, and go make a life. If you’ve fallen on your feet and have a great shrink who is helpful and knowledgeable about DID, awesome! I hope it’s brilliantly helpful, try not to be too surprised if things don’t go exactly as you think they will, and don’t be too scared if you lose them or things change at some point. Get the most out of it while you can. 🙂

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

What is it to have child parts?

It’s many things; funny, beautiful, inconvenient, sad.

This morning it was waking when the front door clicks shut,
to realise she’s leaving like the last ship
pulling away from shore.
There’s a teddy left on her side of the bed and a house
so stuffed with emptiness I can’t breathe.

It’s calling out her name and running
to the door to blink through tears
and try to memorise her face, to beg
a last cuddle before she walks into her day
and we creep back to bed
where the nightmares are waiting.

I love public speaking

Wow, what a day. What a week! Today I went off to talk to a bunch of students about my experience of mental health recovery. I do this particular talk about every 6 months to the new group of students, and as I’ve been giving it for a few years now, it’s really interesting to notice the changes. I reworked a lot of it this morning and updated both the artworks used to illustrate it and the poems used. I remember the day I decided to be open about my experiences of DID, instead of talking only about PTSD. I remember deciding to openly discuss the contradictions about my story and experiences that are so easily missed in a snap shot presentation of my life. Today I pulled out my diagnoses as a focus and talked instead about key experiences – dissociation, multiplicity, voice hearing, psychosis, trauma recovery. I am really comfortable with the development I’ve done.

It went down really well. This one’s a long talk, over an hour, and that can be insanely dull, especially if everything’s done in chronological order or read off a power point. No matter how many times I’ve shared, it’s still an intense experience. My hands shake and my heart races. I remember good advice from an amazing public speaking trainer I saw once – ‘don’t interpret those reactions as fear, think of them and speak of them as excitement’. Fear freezes us, but we can ride the adrenaline waves of excitement. It works for me. I concentrate on not talking too fast (I’m so bad at that, especially when the time frames are tight), making eye contact, being present. People watch me avidly. Sometimes they cry. I’m so moved. I want to hug all of them. I want to sit them down and listen to their stories. I want to hear why they’re in this course, where they’ve come from, what they’re scared of, what they’re hoping to do with their lives. They all have stories.

I can’t talk about the past without going there on some level. I read poems about homelessness or loneliness and there’s a cry in my chest and a cold wind that blows through me. I take people there and I walk them back out again. There’s a lot of courage needed for people to be willing to walk down that path with me, a lot of trust that I won’t leave them in the pit with the bodies, that I’ll help them make some sense of the pain. People are amazing.

I’m home now, on a high. This is predictable, there’s a euphoria for me in connecting with a bunch of people like this, in such intimacy with strangers, in sharing what had been the nightmares and the failures of my life and in doing so, transforming them into sources of wisdom and hope and inspiration. It makes meaning for me. 

A crash usually comes later. At some point, there’s the predictable exposure stress, the sense of rawness and loss, the shattering impact of finding that meaning and hope and connection do not erase pain, that I’m still vulnerable and still haunted. I know it might be coming but I’m still flying, soaking up the high for as long as it lasts. 

This time it’s special because I’m working so hard on my business at the moment and talks are a huge part of that. Getting such warm feedback is a huge boost that I’m on the right track and this is possible. I’ve been quiet on the blog this week because I’ve been so busy writing new content for my websites and working on promotional material for my talks. It’s a huge project but I’m well into the zone, working every moment I get on it all and feeling it all flow. It’s coming together in my mind so well, what’s been confused and chaotic is becoming clear and I can see the next steps. That’s amazing, because I’ve felt lost and stuck since I started at NEIS and found myself embroiled back in the admin based assessments of the small business cert 4. Now I’ve hit the wall and put that to one side, I’m flying again and the business is developing daily. 

If you want to check out my works in progress they are all linked to from this hub site: sarahkreece.com

  • My Business Site – I’m taking a leap here. This is the site for all my face painting and custom art, I’m planning to properly add all my mental health/queer/community sector talks and workshops here. At the moment that aspect is undeveloped because I’m still working on the final draft of my master version of the pdf that will be used to advertise my talks. Once it’s more complete, I think I’ll make this my official hub site and close the other page down, or redirect it there.
  • The Dissociative Initiative – many of you are familiar with this, but it’s been in stasis since my board collapsed. I’m updating it and linking it to everything else I do.
  • The Hearing Voices Network of SA. I’ve wanted to start this resource for years, and tried to pull together interest from local people without success. So I’ve decided to host it myself and then liaise with the interested parties. Why not? There’s nothing to stop me, and we need it!
  • Homeless Care – This one is actually my partner Rose’s fault lol. She got inspired and started a facebook group then picked up lots of work and got too overwhelmed to do anything about it. I’ve decided I’ll take it on as I’m feeling pretty comfortable about being able to hold the space – assemble the website and start some gatherings to work on resources and projects. 

Feedback is very welcomed, as is any assistance for the free networks. Or passing on my details to anyone who might want to hire me. 🙂 I don’t know if I’m going to be able to achieve my goal of self sufficiency, but I’m going to work on it. At the very least, I now have the dignity that comes with having a public identity – an answer to the question ‘What do you do?’ that doesn’t involve talking to strangers about chronic pain and illness. (I try to never ask this question, it always hurt me so much. I try to ask about people’s interests/passions/hobbies instead. Sick people still have those.) And at last, I can see how to support my free resources, keep them alive and gather support for them. I’ve had so much trouble feeling uncomfortable about marketing myself, about asking for money and moving into a ‘small business’ mindset, but I’m starting to see that for someone who is disabled and dependent on welfare, this is also about dignity. I have a right to use all the skills I have to make myself as independent as possible, to care for my family and prepare for my child. It’s not greedy or grasping, I’m not cheating anyone or looking for pity. It’s not my fault that industrialisation has changed the nature of ‘work’ in ways that are extremely difficult for ill or disabled people to fit. In a different time I would live in a family or tribe and help out as and when I was able to, and give my all when I was well. (assuming I didn’t just die of course) In my own way, I’m doing my best to be part of good changes in the world. I will do what I can, and what I can do will be enough. 

Poem – Finding the end

Sometimes I must let thoughts swirl all unformed, nebulous, stars seen through water, no patterns or constellations, just points of light.
I wait and I follow
One thread and then the next, one path
Then the next through the labyrinth, as
The kaleidescope gently tilts and the light changes to green
Then amber, as floor becomes wall and then ceiling.

I found a limit this week, an end of myself, of my capacity
To believe, to hope, to conceal my terror like stuffing all the things
I don’t know what to do with into a spare room and closing the door
Like so many times before it isn’t like the ending of a film
Or a piece of string or the daylight but
Like stepping out of bed in the dark and padding down the hallway
Opening the kitchen door to find
A gaping hole where once there was a floor
A cliff that tears downwards and a dark wind rushing up with the smell of water
The house, the earth, the country itself all fallen into the sea.
That is the coming upon the end of my strength.

At first I am hysterical.
I howl like a dying animal and force my palms into my eyes as if to stop the rain
I take my body and my mind like they are metal I can beat upon an anvil, hot with self hate, and turn into a bridge between
Who am I now and who I wish to be
Who I owe to my loves to be, to my child yet unborn, to the world.

Sanity returns as we start to topple.
I do what all do who stand upon cliffs, and become still.
And there’s a place on the edge that’s without pain
Or joy or hope or love. Blood no longer runs in veins,
There is no more screaming. I look
Perfectly normal. Where my heart used to be
Is an empty restlessness, the dangerous torment of the numbed.
I am alone on a dead planet.

Later I take a step back. My thoughts return
Like gulls wheeling over me. All the threads snapped. Only fragments remain. A memory of skinned
Raw anguish from which all decent people flinch.

I draft no plans and write no treaties
Just rest in the night with the gulls wheeling over
Listening to the tiny whirring of the compass inside me
That will say ‘that way’ and then there’ll be
No night or cliff or screaming in my mind
Just a path and the moon and the next step waiting before me.

Staying a person within the mental health sector

I’ve just read this article 20 Ways to Combat Rankism, by Robert W Fuller, and it resonates with me. I’ve been talking about this issue of what I’ve called a class divide in mental health. I’ve watched organisations that started as peer based, consumer-led, with a lot of flexible cross over between the service users and service providers become dramatically divided into distinct classes. The service users and providers become totally different from each other in dress, language, culture, attitudes, expectations of behaviour, and places they are permitted to access. Most of the power in this unequal relationship resides with the providers, who also bear responsibility for ensuring good outcomes to justify funding. These groups become rapidly polarised when mutual relationships are not holding them both aware of their shared humanity. The roles of provider and user can each be rigid and dehumanising. Those of us who are service providers find ourselves trying to achieve two contradictory aims – preserve the system of professional divide between users and providers, and build and strengthen communities.

Please don’t misunderstand me. We’ve created our therapeutic distance for very important reasons. Whether the system actually works is another conversation, but the needs and challenges are very real. I don’t have simple answers.  But I am deeply disturbed by the divide. When I started working as a peer worker, I thought this was an answer, that we would be able to bridge this divide, those of us who are both service users and providers. That we would bind the two communities back to one whole. But that’s not what I’m seeing. What I’m seeing is a whole community of peer workers who are paralysed by their basic human need to keep their own job. Who are being asked to be braver and wiser than everyone else in the system who has more voice, more power, more status, and more money. I’m also noticing the change of the idea of what a ‘peer’ is. I’ve sat in meetings where Peer Work was described as a career path. As it’s fitted to the mental health model and turned into a job, it’s being torn away from its roots; a place of shared humanity. Back when Soteria was running, the peers who supported people having psychotic experiences did not themselves have to have experienced mental illness. They were peers because they were people.

I wrestle with all of these things because I’m no more immune to their influence than the next person. Do you not think that after years of being poor, bullied, marginalised, and homeless that I cherish having a voice? An income? That somewhere inside I laugh when people who ignored me as a patient pay money to listen to my ideas now that I’m refashioned into a public speaker? I keenly feel the paradigm and the tension of my place within it, allied to both groups and refusing to rescind my membership with either. I was told by my PHaMs worker once that my attempt to insist on my right to maintain the friendships I had with other service users was pointless as it was clear that I was nothing like them and would “leave them all behind” as my career developed. The last time I sat talking with a friend who works at a local NGO mental health org, a staff member popped their head around the door to inform us we needed to leave as we were the last people present and it was now against organisational policy for a staff member and a consumer to be alone on the premises. I had not until that moment considered that I was in that context classified as a service user. I have tried to create change within these systems as a service user, but the total lack of power and voice, the constant dismissal by those who could make changes but do not have any comprehension of the subtle violence their systems do to people finally convinced me that it was not possible to do what I was trying to do. The system does not accept dual citizenship – I may train all I like and create and maintain as many services as I wish but if I fight for my right to make friends with whomever I choose and if I regard service users as my peers I am never to be one of them.

So we have two groups of people, disconnected from each other. They do not use the same entrances to the buildings. They do not share the same toilets. They do not lunch together. One usually arrives by car, the other by bus. On one the burden of healing the sick is placed. On the other, the burden of recovery. There is often conflict between the two, sometimes subtle, sometimes open abuse or violence. Those who seek to bridge the gap are often alienated by both groups and exhausted. Many leave the system. The culture is fatally flawed.

I go and give big presentations in front of important people in big shiny buildings and I feel the lure of power. As a young peer worker, some of my work was being done while at night I slept at the local backpackers. The divide in my world, and in my mind, was overwhelming. One moment I would be treated as a loser, a failure, a pathetic social parasite by a bored, tired, angry worker at the local welfare office. The next I would get a standing ovation and a hundred hugs from an audience. My life flickered between being nobody and somebody. The experience was agonising and illuminating. I also felt the structures, the hierarchy, the expectations and the culture, set itself up in my head. I started to see people through this lens of nobody or somebody, to try and attract the somebodies, to give less time and attention to the nobodies. And to panic that this would cost me, that success in my goals, of employment in mental health, would undermine my values and turn me, slowly, into somebody I do not want to be. I’m not strong enough. Some people are, but I imbibe the cultures around me. I sink into them and they into me and years and years later I’m still crashing into them into my mind. I adored my local Hearing Voices group because I walk into that space full of people without power or voice or money and we would be kind to each other – nothing more, and I would feel like a human again. Not a nobody or a somebody. Just a person like them. It was like being able to breathe again after coming off some hideous drug. It makes me cry to think of it. They became my grounding point, a place where I felt real again, somewhere to return to after debasement or accession.

Now I’m in the NEIS scheme, working to set myself up as a freelance artist/writer/poet/community builder… And I don’t know what I am. I’ve investigated my insurance options as a freelance mental health worker and it’s possible. Mind blowingly expensive but yes I could set up privately to do my talks, workshops, groups, even one to one support. It’s about 3 times the cost for me than for someone who has a degree in the field. And for awhile I wondered if I should go and finish my psych degree to make life easier. Then I realised, I don’t want to be a psychologist, or a psychiatrist, or a counsellor. I never really have. I want the information, the access to materials, but I don’t want to practice the way they do. I don’t want to do therapy. In fact, I’ve been fighting for the right not to have to for years. I don’t want to take my place in this hierarchy presented me. I don’t want to choose between being a user or a provider. I don’t want to pick which side I’m allowed to find my friends from. I want to be an artist. I want to help people be more free, more informed, and more connected. I want to be a peer worker. I want to be a member of any group I help to run. I’m tired of the roles and being dehumanised by them. I don’t want to be a somebody or a nobody, I really just want to stay myself. I want to help other people be their own selves. That’s probably not very useful to write on my professional indemnity insurance application. But I guess I don’t want to be a professional. On the other hand, I do need to make a living. And there’s the clash. I do need to understand and work within the legal and cultural frameworks I’m presented with. I haven’t found a path yet. I’m still hacking at the jungle and hoping there’s a way through. I’m still trying to get out from under the paralysis that trips me up when I feel like success is as much a threat to me as failure.

Looking for a donor

Not since I once sat in a church, covered in rat piss and hoping desperately to fit in with my new lesbian friends, have I felt so damn awkward. Searching for a donor is an astonishingly strange process. It involves using the word ‘sperm’ in conversation more frequently than I have in the entire rest of my life. It’s nerve wracking and vulnerable and exciting and sad and weirdly similar to dating, if dating involved no sex and unusually frequent references to sperm.

Let me take you through the process so far. Rose and I need a donor as neither of us produce sperm. Plenty of couples find themselves in this boat for many reasons. Our first idea was to cross the genetic lines of our families – as we are both keen to carry a child, to ask for support from male relatives on both sides. Sadly that hasn’t worked out for us. Our second idea is to find a known donor that we are already friends with, or whom we become friends with, to help us have a child – maybe more than one with the same guy if that works out. Anonymous donation doesn’t appeal to us. There’s upsides, for sure! A total lack of drama for one. Less anxiety about relationships fragmenting. But Rose has never known her father. We know what it feels like to have a big empty space in your biological history. We don’t want that for for our kids. We’d love someone who we can point to and say ‘that’s the guy’. This is your donor. He’s not your parent, he’s not responsible for you, he doesn’t pay your medical bills or sit up with you when an assignment is due the next morning, but he’s a family friend. You can ask him questions. You can figure out how you want to relate to each other over the years. We’re not scared of him or threatened by him and we don’t want to hide him or pretend he didn’t exist. He’s part of the story of how you came into the world. There’s no shame in that. In fact, he’s a pretty awesome guy. We chose him, just like we chose to have you.

Being a known donor is a big ask. It’s a weird role. The closest parallel I’ve been able to come up with is that of an uncle. You’re involved in the child’s life to some extent, there’s a recognised relationship that may be closer or distant. There’s a biological tie. There’s no legal or social responsibility or rights. A fight with the parents could see you on the out. You’re kind of invested but also in a vulnerable position. If things go wildly wrong you may one day be asked to see if you’re a match for bone marrow for a kid that’s not yours. For many guys this role is a really poor fit. They want to become a donor anonymously and stay distant, or they really want to be a father, not a donor, and they’ll be intrusive and suffer greatly if their access to the child or their desire to relate as a parent is limited in any way. It’s a pretty unique kind of situation and it doesn’t fit everyone.

So Rose and I have been casting our net wider, so to speak. We’ve put up profiles on local dating websites, and we’re sharing our search with friends and contacts. We’re moving slowly and seeking to have a good foundation of friendship in place before we start trying to conceive. Talking with strangers on the net about donors has been… Illuminating, entertaining, bizarre, funny, and creepy. We’ve met some really lovely guys. We’ve deleted a lot of wildly unsuitable ones. We’ve explained that sex is not involved in being a donor, a LOT.

As I said, it’s oddly similar to dating. You get neurotic easily (am I talking too much? Too little? Am I mentioning the donor thing too often? Not often enough?). You get excited quickly and dream a whole future that dies a deeply disappointing death when things derail. You’re flooring the accelerator with excitement and hitting the brakes with anxiety at the same time. You’re keen for no one person to feel under pressure, so you’re still talking to other new possible guys, but that also feels weirdly like cheating or snubbing the ones you do like who have expressed interest in being involved. Communication is a challenge. Them reading this blog and having to process a whole bunch of stuff about someone fairly out of the norm is a challenge. Them worrying about being exposed when interacting with someone who lives a very public life is a challenge. The whole process is rather strange and fragile.

So, this is our online profile:

About Me

Female 31 Australia

We are 2 awesome ladies who have been together for nearly 2 years and are looking for someone fantastic to help us to have kids. We’re 29/31 and looking at starting within the next couple of years. We work in Youth Work/Alternative Education, Mental Health, and do face painting work on the weekends at kids parties. We’re smart, creative, silly, and a bit nerdy. Love reading, cooking, camping, card nights, and hanging out with our mates.

Seeking Criteria

  • Members anywhere in South Australia.
  • Friendship with a man or a woman.
  • Between 25 and 40 years of age.
  • Members who speak English.

What I’m Looking For

Someone awesome to be a sperm donor and help us start our family. We don’t mind what nationality, sexuality, or gender identity you are but you do need to be between 25 and 40. Single or part of a couple is welcome. What’s important to us is that you don’t carry any known major genetic illnesses, that you’re happy to be tested so we all know that everything is safe, and that you’re a great person with similar values to us and excellent communication skills. We’d love to have a long friendship with our donor, and to have our kids know you and know their genetic history, so our first preference is to go down the DIY road rather than anonymous donation.We are also open to talking about supporting you to have children if you are gay or your partner is unable to bear children. We’re not in a rush, we’d love to meet up, get to know each other, talk things through, and make sure everyone is comfortable and on the same page.

Also happy just to make some new friends. 🙂

The process of donation involves coordinating with each other to pass along a sperm sample during the most fertile time of the month. Happy to talk about that in more detail. 🙂 Sex is not involved!

It can be a little awkward to start conversations about being a donor dad, so we’ll leave the first move to you. It just feels a little odd to say to a stranger – hey you seem nice, can we have your sperm? Feel free to strike up a conversation if you’d like to chat! 🙂

I’ve also taken to having the following spiel saved in a word document so I can copy and paste, seeing as it comes up in every conversation. It’s the basic run down of the process for when you’re using artificial insemination (AI) at home.

The first step is making friends. Donating can be a bit of a process and it’s best if everyone gets along and feels comfortable with each other.

The next step is getting tested. Sperm samples can contain STI’s such as HIV, so it’s super important to know no one will get sick.

So once everyone has the all clear, some paperwork is signed to say that this is a donor relationship, and no sex is happening. That protects the guy from being sought after for child support, and allows us to try and get both of us legally recognised as parents on the birth certificate.

The process of donating is quite simple. A couple of times a month the donor and we arrange a time that suits everyone on the days we know the biological mum is most fertile. The donor puts a sperm sample into a sterile cup that we provide. Then within one hour we arrange a handover – he drops it off or we pick it up.

Sperm dies really fast outside of the body, so that bit can be tricky to arrange, especially if the donor and us don’t live close.

But basically that’s it. This goes on every month until a pregnancy occurs, then if we’re lucky, all goes well and a baby is born. 

Please be aware if you’re thinking of going down this road yourself that there’s some important considerations to keep in mind! Firstly, someone can have HIV but not show up as HIV positive in testing for a couple of months. So a clear STI test doesn’t always mean you are safe. When you’re using donor sperm and a clinic, the usual practice is for the clinic to freeze the donor sperm for 3 months or longer, with an HIV test for the donor at the start and end of that time. If both are clean, then the sperm is considered safe to use. Obviously you can’t do this at home, so you need good, honest conversations with a donor you trust about their risk of contracting HIV. Despite popular belief, the health of the donor is also very relevant to the chance of conception and a healthy pregnancy. It’s probably far more important to look at factors such as current drug use rather than education level or eye colour when you’re choosing a donor.

Another important thing to consider is the laws where you live about donors and parental rights. Everywhere is different. Don’t assume that just because you’ve used AI instead of had sex that you’re all safe and legally protected. Not all the laws recognise donors outside of a clinic, and not all the laws recognise that a same sex couple can both be parents. There are occasional horror stories about donors being pursued by the state to pay child support, or a non-biological partner being denied access to their own children following the death of the biological parent, or breakdown of their relationship. Do your homework! You may need to lodge forms, sign stat decs, and jump through various bureaucratic hoops to make sure your relationships are all legally recognised the ways you’re setting them up. If you are trying to set up a poly relationship or clan with more than two parents being recognised legally, you need advice from a specialist lawyer because this is extraordinarily difficult to pull off within current legal frameworks. It’s also important to mention that, all jokes aside, please don’t use regular household items such as your kitchen baster for DIY insemination. You can buy single use, sterile medical supplies online discretely through sites like DIY Baby. The last thing anyone needs is infection at early stages of pregnancy.

Another consideration is that around half of all fertilized eggs are lost to very early miscarriage. Women who conceive through sex are often not aware they were even pregnant because it happens so early in the process. But for those us using donors, we’re watching the whole process and often confirming pregnancy very early. So while our chances of miscarriage may not be any higher than anyone else’s, we can be aware of early losses other people aren’t and this can be very painful. It’s worth keeping this in mind and remembering that sadly, losses are to be expected as part of the process. (just as a side note, this is not what has happened with Rose, all her losses have been later, hence our care to go through fertility testing and work on pre-conception care to reduce our risks) There are things you and a donor can do (such as not smoking) to reduce your risks of miscarriage, but the base-line stats even for healthy people with low risk factors are still a lot higher than most people realise, and this can be a shock, both for you and your donor.

Lastly, even with the best of care in tracking your fertile window each month, it can take a while before conception and pregnancy result. When you’re inexperienced and excited it’s easy to think of a sperm sample as being a magic ticket to a baby – especially so if you have friends who’ve been more fertile than they wanted and had pregnancies on the pill, or when you’ve all spent your whole adult lives being super careful to avoid getting pregnant and worrying that the smallest mishap will inevitably result in an unwanted pregnancy. Both you and your donor need to be prepared that this could take a little while, and that’s normal. You may be lucky, so be ready, but you may also spend months arranging collection of samples with a donor who needs to remain a low HIV & miscarriage risk throughout that time. It can be a lot more drawn out and inconvenient than anyone was expecting. It may be worth having conversations at the outset about how you will approach things if someone’s circumstances changes and they want to stop. Donors have lives, sometimes their kid gets sick, or they get an interstate work offer, or start a new relationship, and what was a wonderful idea six months ago has become a stressful imposition. Sometimes too, your circumstances change and you change your timetable, perhaps you need time to grieve after losses, or you suddenly have to move house, or find yourself caring for a sick parent. Putting this on the table at the outset can help those important conversations to happen early and calmly if they need to. This is doubly important if you have a reciprocal arrangement with a donor – ie two families assisting each other to have children via sperm donation and surrogacy. There’s a lot of opportunity for heartbreak and hurt in these situations, as well as connection and joy.

If you’re curious to learn more about different family structures, including families with a known donor, I recommend (and own) the book Baby Makes More. There’s a wonderful range of families who have shared the good, bad, and ugly of their choices, their struggles for acceptance, and their efforts to find a language to communicate about their relationships. The legal trend is gearing generally in the direction of known donors after many years of anonymous donation. Some children born with the help of an anonymous donor experience the kind of dislocation that children born in closed, secret adoptions do, and go searching for information and history as they get older. In recognition of this, legislation is beginning to change in places and enforce that more information needs to be disclosed for secret donor arrangements, and that adult children conceived with a donor should be able to access identifying information. This is not to shame or judge those who have chosen to use an anonymous donor, merely to point out that we are moving in this direction culturally and we need to find more comfortable language for families and relationships like this. Where once it was thought that secrecy helped people, that children were more secure if they didn’t know their ‘big sister’ was really their biological mother, or that people would cope better with sickness if they were not told how bad it was, things are swinging more in the direction of disclosure and openness being essential to trust and a healthy sense of self. It’s no guarantee, and there’s certainly downsides, but we are starting to embrace that family comes in many forms, and that these complex ties of love and blood are part of all our lives – for good and ill.

Fat Shaming

Someone I hardly know has just had a go at me on my facebook page for daring to mention that I’m sick when I also happen to be overweight. Fat shaming is pretty endemic in our culture, and random attacks from near strangers are often the price I pay for the public way I’ve chosen to live my life. Being open on a public blog and willing to ‘friend’ strangers unfortunately means that every now and then a kind of critical mass builds up and those who have been silent in the wings decide now is the time to speak out. It’s happened before and it will happen again. It always hurts, it always makes me angry. There’s a sense of betrayal about having honesty and openness rewarded with judgement. But every time I’m also so aware that I’m actually okay. This kind of bullying is now reasonably rare in my life. I don’t let the bigots and the bullies near me anymore. People who scare me, shame me, put me down, or abuse me don’t get to be part of my inner circles! How many of us can’t say this? How many of us suffer because this happens, not with a stranger over the net, but at the dining table every Christmas, or in bed with our partners? I’m pretty tough, and I’ve got great friends. I’m not drowning anymore in negative messages about myself. I’ve escaped those environments and left those people. Every now and then I just have to cull my online networks a little to prune out the people who don’t get it, and who think my patience is a free ticket to hurt me. It’s not such a big deal for me, but it’s a huge deal for so many of us.

Sometimes I’m harassed for being openly gay, and that can range from daft to really frightening. Sometimes it’s about my alliance with some kind of minority group. Today it’s ostensibly about my weight. And of course, I can argue. I could justify myself in so many ways. I could talk about how I suffered severe joint pain back when I was a healthy weight, in fact much worse pain than I do now, pain so crushingly severe I was in a wheelchair. Exhaustion so debilitating I could not raise my arms over my head for more than a moment. I needed assistance to wash my hair, at times even to dress or eat. I could talk about how my weight is partly the result of medications I have to take to manage another chronic pain condition. I could talk about how my health is actually better now, at the weight I am today, than it used to be when I weighed less, how my blood cholesterol is lower and my diabetes indicators have gone away! I could talk about our lack of understanding of the relationship between weight and health, how our assumptions are wrong and profoundly unhelpful. I could talk about my history of an eating disorder and how tender and sensitive my relationship with food and my body can be, how vulnerable someone like me is to shame and self loathing. I could talk about how my weight went up during periods where I was homeless, on the run from domestic violence, and doing intensive, exhausting, terrifying caring for a suicidal family member. How issues like weight become so irrrelevant when you don’t have anywhere to sleep, when you’re sitting up late again eating service station food because you don’t have anything to cook on, and the person you care about needs to be watched so they don’t try to kill themselves in the night.

But really, so what? So what if my extra weight was simply because of my lifestyle? So what if all my medical problems stemmed directly from my weight? I don’t actually need all these justifications to say that fat shaming is wrong. I’ve worked in Eating Disorders. I’ve worked with people who starve, binge, cut themselves, dissociate, and put their lives at risk. I’ve worked with people who were beaten as children when they gained weight at the weekly weigh-in. People who were starved through deliberate abuse or chronic neglect. People who spent parts of their childhood stealing food and eating out of bins. People who tried to cut out their own fat at 12 because they were being bullied. People who compulsively hoard food because they so often went without. Forget about weight being a health issue for a moment. There’s some grey area about how exactly all that works. What I can tell you, is that shame is lethal. It kills people. It profoundly distorts our sense of self, of being an okay person. Fat shaming makes people hate their bodies. It makes us embarrassed to eat in public. It makes us burn our skin. It makes us hide food in secret stashes that we consume with the guilt and craving of an addict. It makes us starve ourselves. It makes us refuse to be naked with our partners, or unable to imagine we might one day have a partner. It makes us settle for terrible partners who fat shame us and abuse us, who make us feel worthless and lucky that someone is willing to put up with us, and even to have sex with us. Even if sex hurts, even if it makes us feel degraded and scared. It makes us scared that we’re being passed over at work, constantly judged as lacking in self control or self respect. It makes us obsess over the weight of our children in ways that shame them also. It makes us kill ourselves.

So, if this is about health and caring for people, don’t shame. Don’t make someone’s weight the first or second ever conversation topic. Don’t assume that those of us with health problems and illness have them caused by our weight, it’s often more complex. Don’t assume laziness and self indulgence. If you want to demonstrate your caring, be open, listen, openly reject shaming. Acceptance and compassion are the places where people might open up to you. Public struggles like weight can be exhausting and leave people tremendously vulnerable and isolated. Be friends. Be vulnerable yourself. These are the places where people feel safe enough to share and ask for help. These are the ways we can start to have conversations about what’s going on and how you might be able to be a support. Not all of us who are overweight have shame issues, other things can be at play. Sometimes a kick in the pants for a person who thinks they’re immortal can be a help. But many of us are vulnerable. So unless you know us very, very well, and know how to pull off a kick in the pants without shame, don’t ever kick. Reach out.

Fat shaming isn’t about caring. It’s partly about making yourself feel superior to a clearly visible group of people. It can be about narcissism, it can be about insecurity, it can be about shame! All the traumas I’ve just described can make people engage in fat shaming too! Whatever the cause, it leverages your own sense of being okay at someone else’s expense, and that’s really the heart of bullying. In this case, I think it’s also about silencing people with disabilities. I have often been told that I’m not supposed to share my bad days. People are uncomfortable with hearing about things like chronic pain, sickness, vulnerability, incapacity. It’s scary to think it could happen to us. It’s awful to feel bad for someone and not be able to fix it. Being exposed to someone’s disability can leave us almost vibrating with this urgency we can’t manage. We want to fix it or run away, and often we manage this by blaming the person or shaming them into silence. I share so much that’s positive. So many good days, so much about my thoughts and ideas that are hopeful and excited and full of healing. The ratio is a very good one, far more positives to negatives. But sharing that I suffer from chronic pain can still make people tremendously uncomfortable. It’s hard to walk alongside those of us who have been forced to become living reminders of everyone’s mortality and fragility! Silencing becomes a way to maintain cultural denial. It keeps things comfortable if people like myself don’t share. If we’re still shut away in back rooms, or locked up in institutions. In some ways it’s almost worse if we can be articulate about our experiences, if our sharing evokes a kind of unwanted empathy. It’s painful. People who don’t know what to do with that pain can cope with it by lashing out. I get that!

But we need people like me to talk. In fact, we need everyone to talk! We need to listen to each other and hear the tremendous variety of life experiences out there! We need to know that we are mortal and fragile, these are things that make us kiss our children before bed every night, that makes us hold our tongue when we want to spit cutting words at someone. We remember that we’re human and that life is often painful and overwhelming, as much as it is also beautiful and amazing. None of us need more shame. None of us need to feel alone, afraid, trapped, less than human. We all deserve to live our lives as openly as we wish, to share our experiences and be known, to be vulnerable and to love with courage. Don’t shame each other. Don’t let those who do shame you into your heart. You have the right to feel worthwhile, you are no more, and no less, than any other person. In our imperfections are the seeds of our humility. We can meet each other with love.

Holding my childhood to ransom turns 3!

Wow, three years of blogging. I love it. Writing used to be private and solitary. I adore the interaction of a blog (admittedly, most of my interactions still happen over at facebook or via email, but it’s still awesome to get feedback, critiques, or opinions straight away for something I’ve written or shared). I follow a many other blogs and enjoy the sense of connection and sharing of information. I continue to try and make the leap from blog writing to book writing, but I struggle with the impulse to share my thoughts straight away, with the concern that someone somewhere might be looking for help, and with the change in format from posts to chapters… I think in blog posts now! It’s been a year now since I moved from blogger to wordpress and I’m still happy with that change. I still don’t make any money from my writing, which is a little sad considering how passionate I am about it, and how much time I devote it… and that it’s one of my few skills that doesn’t generate joint pain for me. I still haven’t figured out how to get google analytics to work on here so I’m only guessing about my site stats.

My top 5 most popular posts of all time are:

The most popular search terms that bring people to this blog are about psychosis, empathy, bulling, chronic illness, trauma, multiplicity, dissociation, feeling suicidal, and face painting. I have published 894 posts in 19 categories. As usual for me, it’s been a busy year. I saw Amanda Palmer in concert, then got onto twitter for the first time, talked to Amanda Palmer, and tweeted short poems. I grieved for two lovely friends, Amanda, and Leanne. I celebrated a year with my gorgeous girlfriend Rose. I wrestled with challenges facilitating various groups, delivered a talk at the World Hearing Voices Congress in Melbourne, discovered our cat Tonks is a she, not a he, navigated life and my relationships, and other people’s reactions, when you have chronic illnesses. I had rough nights and used ink on my skin. I had my second experience of psychosis. I graduated and won an award! I figured out to use routines to my advantage. I wrote a lot about triggers, love, dissociation, stigma, recovery, growing up, sex, mindfulness, and crisis. I nailed down my philosophy of multiplicity in a nutshell. I set up my first art studio! I turned 31. I hung out with my goddaughter, Sophie, and shared a lot of art from my bachelor degree. We spent more time getting to know our trans guy parts. I was sick a lot, managed a lot of pain, and did a lot of system work. Rose and I moved into preconception care as we plan for children of our own. It’s been a pretty wild ride!

It all started with this post, on Aug 1st, 2011 – What am I up to at the moment? If you’d like a summary of the blog in development, check out my yearly updates on Holding my childhood to ransom turns One, and Two.

Thankyou to everyone who has visited, read, shared, commented, or emailed me. Your kindness, insights, and willingness to share are a blessing. I’m thrilled to have journeyed with you through the last three years. I hope you’ve learned as much as I have.

I’m not sure how long I’ll keep blogging for. I can see that book writing and blogging may not both fit in my life and I’m sad and unsure about that. On one level I love being here and being so open and I am anticipating sharing the joys and sadness of starting a family. But I’m not wedded to the idea either, it’s been a huge project and I may need my time and passion to go elsewhere. For now though, you’ll be hearing from me soon. 🙂

Motherhood with Rose

Rose and I talk a lot about having kids. When, how, child raising values, options for donors, financial pressures, housing challenges, and the unique concerns and possibilities afforded by a pair of women in a relationship. (we are by far luckier than a pair of guys in South Australia trying to start a family – sorting out a donor is a lot easier than finding a surrogate) Financial is a messy, tricky one. I don’t want to raise kids in poverty. On the other hand, our poverty, here in Australia, is comparable to some pretty serious wealth in many other parts of the world. It’s a weird one. We’re working on various options for long term financial survival despite health and disability issues. Rose’s job is a blessing in this respect, and I’m trying to juggle my health, my business plans, study, and home life. Some days it feels like it’s all working out, others I’m buried by it all.

I recently discovered that if Rose and I have a child together, that we cannot have both of us on the birth certificate as parents. I’m crushed. I’d been told that this was possible now in South Australia. Apparently there’s a time factor. Both same-sex parents can only go on the birth certificate if they have been legally recognised as defacto partners for several years. This seems arbitrary and ridiculous to me. One night stands resulting in pregnancy are recognised, while both of us loving and planning and being cautious about living together before we’re ready have to go to such lengths to prove we are parents. I hate it.

One of the challenges I find is that culturally we have this idea of the real Mum. A lot of us don’t fit it. A step mum isn’t a real Mum. A transwoman can’t be a real Mum. An adoptive mother isn’t a real Mum. And the first time someone asked Rose which one of us was going to be the real Mum, I realised that we weren’t going to fit it either. One of us, the one who carries the child, is seem as the real Mum. The other of us will be the other mother, an oddly dispensable role, and one with eerie echoes of the creepy bad character from Coraline. The person who isn’t on the birth certificate, who has no automatic legal recognition, and who is often seen as a kind of watered down, inadequate father, or an unnecessary duplicate. A kind of spare Mum, in case something happens to the real one.

Gender roles can be a real headache. I hate them when I’m in a relationship with a man. I hate them when I’m in a relationship with a woman. I hate being asked ‘which one of us is the man’ as if being male and being the ‘dominant’ partner are synonymous, and as if every partnership must have a man or a man substitute in it to be legitimate. I find it deeply offensive to be told that ‘all relationships, even gay ones, have a male and a female in them’, and Rose and I have encountered this idea more than once! Or to be asked which of us is the ‘butch’ one, or which is the man of the household. (obviously, that’s my cat, Sarsaparilla) One of the funnest things for me about dating a woman is that there are no clear social roles. Who pays at dinner? Do you open doors for each other? Who cooks the BBQ’s? You get to define all these between the two of you to be whatever you like. This is awesome! You can figure out what suits you with a whole lot less social friction around defying traditional gender roles. Unless of course, you’re in networks who need women to be ‘girly’, or need one of you to be clearly defined as the ‘manly one’.

The same gender role issues happen when you start planning a family. I don’t like being seen as a castrated father to a child Rose carries and delivers. I am a real mother. The clearly defined roles of mother and father that have been inherited from a terrifyingly rigid 1950’s model, get instead broken down and parcelled out to each parent, each aunt and uncle and family friend and godparent and grandparent. Everyone brings something different, something unique, to the life of a child they care about. We’ve spent so much time in our culture having arguments about gender and how being a mother and being a father is different, more or less important to a child. Gender is important, if for no other reason than it is an intensely key aspect of how our society thinks about and treats people. But, like relationships, parenting roles work best when they’re fitted to skills, interests, and passions, rather assigned based on gender.

People are often baffled or weirdly thrilled when Rose and I tell them we each hope to carry a child. On the one hand, this fits us neatly into the gender roles of female. On the other, it defies the belief that even queer relationships have strictly separate male and female roles. And here’s the real kicker – to both be legally recognised as parent of our own children, we would have to be living together in a defacto relationships for a number of years – which is assessed by welfare and would radically reduce my pension without considerably reducing our expenses. This doesn’t happen for any other type of relationship. I could live with my sister or any other family member, any friends, anyone else in the world, provided we’re not having sex. We could raise children together, share household responsibilities, in all other ways be a family… we could even be ex’s or one could be full time providing care for the other through sickness or disability. But if we are currently in a sexual relationship, I become immediately forced to be financially dependant on Rose, and both of us struggle to pay the bills. You know what – I realise that we’re so used to this idea it seems ‘normal’ to us, that we have spent a very long time building our notion of family around a sexual relationship between a single couple, but I’m repulsed by this. It makes me feel like my government is prostituting me. Rose and I could support each other as straight single Mums, raising each other’s kids together, we could relate as sisters, we could build our own family on any number of wonderful different ways, but sex is different. Sex means I can’t maintain my financial independence, my own balance of power, my separate self. We’re a halfway secular country still running on ideas of ‘becoming one flesh’. This makes people like me highly vulnerable. I have watched so many people, often but not always women (that’s another post!), become so vulnerable because of our ideas around housing, finances, and sex. It’s time for change. If we want to stop the merry go round of vulnerable people winding back up on the streets or in shelters, we need to make it much, much easier for them to explore new relationships without losing their housing or income! This bizarre privileging/excluding of sexual/romantic relationships apart from all other kinds of relationships is so unnecessary. Families come in many different formats. Love is what binds us together. There are platonic flatmates out there with 1,000 times the compassion and devotion to each other than exists between some mothers and their children, or some husbands and wives. Sex with someone should not collapse you into a single legal entity, financially or in any other way. We are beyond this now, thankfully, here at least. We are not property. We are not resources to be sold or bargained over. Marital rape is a real thing. Domestic violence is a real thing. Queer relationships are no longer illegal or mental illnesses. Fostering, adopting, kinship care, and step families are part of our normal family make-up now, as are extended communities of ‘family’ we may have no blood or marriage ties to. More than one sexual partner in our lifetime, casual sex, poly relationships, and defacto relationships are happening all the time. When our laws around tax, marriage, lineage, and legal standing haven’t caught up with the social changes, people are highly vulnerable, such as trans people having their marriages dissolved whatever their wishes. People get hurt!

So, Rose and I live in separate houses, because it has worked for us. It keeps us both independent financially, it gives us each a sense of secure home that isn’t threatened by hitting a rocky patch in our relationship, (because we have not got our shit together around housing and homelessness in this culture!), it holds onto my public housing unit while we try to decide if we’re financially secure enough to let it go, and stops our cats from killing each other. We’ve made it work for us. We love our little commune of close friends. It’s unusual but not unheard of, Frida Kahlo and Diego Rivera lived in adjoining houses, as do/did Tim Burton and Helena Bonham Carter. We’ve taken the challenges and found a way to make them work for us. We’re now faced with the bizarre scenario that the only way we can both be entered onto the birth certificate of our child (and therefore legally recognised as joint parents) is to trek across state borders towards the end of pregnancy, and make sure that we give birth to any children in Victoria, where the laws are different. The only alternative is to give up on the birth certificate and pay lawyers a lot of money to draft parenting agreements. But that empty box on the birth certificate, it’s haunting.

We’ll figure it out. We’ll be okay. We’ll make it into an adventure, a wild story to tell, I hope. We are so damn fortunate, we have so much protection and so many rights, bought through much struggle and courage by people who have come before us. We have some of the most beautiful friends and family in the world, people who see us as people rather than living embodiments of gender roles. People we love as family, who are excited for us and supporting of us. We are blessed indeed. But this mess around both of us being recognised as mothers makes me very angry. We deserve better.

Deviant

So, yesterday Rose and I are hanging out at a medical centre, waiting for an ultrasound. They’re running late and I am starting to worry I’m about to pee on the carpet. I had remembered many years ago going for an ultrasound and being told I must not have drunk enough, so they made me drink another litre and hang about the waiting room for an extra hour and a half. I may have gone a little overboard as a result, it felt like I had a watermelon in my bladder!

They start on the top of my tummy. My bladder looms like a huge black lump on the screen and the technician tells me that I’ve definitely drunk more than enough. Rose and I keep getting the giggles and I have to keep telling her to shut up or this is going to get awkward! The tech, we agree later, is very sensitive and professional, and rather cute in a very straight way. I was surprised that she was taking pictures so close to my pubic bone. After seeing all those images of disembodied reproductive organs, mentally I’d kind of strung mine out and looped them all through my stomach. She said lots of people make that mistake, they’re actually only a couple of inches big. Things you learn!

She has quite a bit of trouble taking some images internally, and I ask if having a retroverted uterus makes that job trickier. At which point she tells me that my uterus isn’t so much retroverted as deviated, and Rose and I get the giggles so badly she can’t take any more pictures for a few minutes. I’m a deviant! Medically confirmed. Septum (bit in your nose) AND uterus.

That’s almost as funny as the graffiti we found scratched into the back of Rose’s car the other day – dyke. Misspelled. ‘Dike’. As if pointing out that she’s into women would surprise, confuse, or shame her! It’s no more offensive than someone writing ‘woman’ on my door, or yelling ‘hey, she has feet!’ when I walk past them. Although a friend pointed out its hard to tell with the barely literate, they may have been going for ‘dick’.

Life is so much better when you have a sense of humour.

Goodbye Kiki

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There’s much sadness and heavy hearts in my world. My sister’s darling little cat Kiki was found dead a couple of days ago. A vet was unable to tell us if the cause of death was accident or intentional, only that it was a trauma, and probably mercifully quick.

Every now and then an animal comes into your life at exactly the right moment. Kiki was our cat Tonks’ sister, and she had an incredibly bright spirit, deeply loving and full of mischief. She and my sister shared a deep bond, and the shock of her passing so young and so senselessly is huge. My sister is a wonderful woman who has gone through far too much upheaval. Diligent, loyal, intelligent, fierce and gentle, she has endured much loss and disappointment. Kiki was a constant, a bright spark of warmth and life that cheered flagging spirits and made it easier to lay to rest long days and start new ones with energy. Whatever other changes were happening, there was Kiki. Curled up in bed at night, following her around the house, or riding on her shoulder. In many ways, Kiki was my sister’s home. Without her, everything is wrong, home is not home, there is no anchor holding fast. We all know it, and we’re all reeling.

We shatter apart and come together again, recognising the loss and the changes. Rose and I hold each other in the dark and whisper of her lost babies, of what it will feel like if we lose more. I remember Leanne and Amanda with an aching heart. We talk about grief, about life after death, about family. We feel the shadow of Death upon our lives, the senselessness of it, the sharpness of cut threads, the unknown timing to the ends of our stories. A cold wind blows.

We gather to bury Kiki, talk about good memories of her, honour a rare and special connection between human and animal. We wake to a new world, changed, sadder, grieving. Kiki’s body lies beneath snowdrops blooming. Life goes on, all around us, under us, over us, it hurts, and it is beautiful.