Peer Work

Pregnancy & Grief

/ Sarah K Reece / 6 Comments

The most wonderful news came in last night – the laws here in South Australia have been changed and just in time for Rose and myself. This means that she will be able to be on our babies birth certificate and has full legal recognition as their parent, alongside me. We were so happy we cried. It makes such a difference for our little family.

I am 15 weeks pregnant now and my bump is too big to fit my jeans or a lot of my skirts comfortably any more, although I still weigh a lot less than I did at the start of this pregnancy. I am experiencing a little less intense nausea and getting about 2 good days out of every week, but the fatigue in particular is still severe and demoralising. My world is home at the moment; I do housework, and household admin, and debriefing for people, and drive people to appointments when needed. A lot of time is needed to rest. Eating is still a bit tough and often takes some time to recover from. I’m hoping that as the pregnancy progresses I might start feeling better and better. Rose is busy and productive with her full time study, and the teen staying with us is a studious school student, so I feel a bit lost without a project of my own, in that rather unglamorous and unrecognised place of spending my health on whatever needs doing I can manage around the edges. I’ve been getting very teary and distressed at the prospect that I might not make it back to paid work or wind up with a degree or a career despite all the work I’ve done towards those goals.

Rose is such a help. She doesn’t get my distress personally – her focus is on being a Mum and that fills her world. I always wanted kids and work outside of the home and I’ve been so ill for the past 6 or so months I’m starting to lose hope. She was up with me until 1am last night while I just cried my heart out. It’s a madly intense grief and it’s all tied up with self worth and a sense of significance and belonging and connection and making a difference in the world… I don’t feel any sense of judgement towards others who need support or are sick, I’m just struggling to navigate it myself. It’s a little better than it was 6 months ago when it actually felt like if I couldn’t figure work out and find a way through I couldn’t survive. Planning a baby has kicked my sense of wanting to financially contribute to my family into overdrive, far beyond my capacity. And where pre-Rose my focus was strongly about contributing to the world – doing something of value whether I got paid or not, with a family I suddenly also needed to bring in money. Those are very difficult values to pair up at the best of times. I feel like I’ve been mangled between them.

It’s become such an obsessive focus for me that I’ve been unable to do other things that I love, like paint, because it doesn’t even feel like I can breathe until I figure this out and am on track for a paid job. Combine that with very poor health and that’s a long time of beating myself up and not breathing. I was chatting with a friend the other day who was angry about someone who was breaking the law and being horribly irresponsible and I mentioned that I was not feeling like I was being very responsible at the moment. She looked at me oddly and said that being on disability support wasn’t criminal or irresponsible. I know that but it actually kind of surprised me too. The kind of urgency I feel is as if what I am doing now is illegal and I must find an alternative. I know it’s not rational but it’s incredibly difficult to put the brakes on it.

I find it so much easier to be brave about my mental health than my physical health, which is the reverse of most people and probably partly a hangover from having all my physical health issues treated as psychosomatic for so long. To talk about having a child while on welfare, in my culture? It takes more courage than I have most days. I get attacked, like everyone who’s poor or queer or has a disability does when they want kids of their own and it’s just too much to bear a lot of the time. Too public, too vulnerable, too much vitriol from too many directions. All spewing the same message of worthlessness, as if I haven’t heard that enough in my life, felt it enough. In some ways being a parent feels like crawling back into the school yard to let the bullies have another go at me. See if you can hit me where it already hurts, some of those wounds aren’t very healed still. I feel an intense grief to be where I am, such a sense of lost years and lost health, so much pain and chaos. So many dashed hopes and so much hard work.

All my accomplishments start to twist in my mind and what I was once proud of, like my extensive voluntary work, I start to feel ashamed of, that I was foolish and trusting and exploited. That I somehow fell short being good enough to pay. That I trusted the wrong people, made the wrong decisions, invested in the wrong career paths, and cared too much about keeping my precious ethics intact to deal with the real world of work – which is that I am nobody and have no power and no voice and should simply have put my head down and done whatever was asked of me. My overinflated sense of personal responsibility and grandiose ideas are the real problems. My sense of connection to and trust in other people twists too. I feel very envious at times, and in some cases very burned and bitter, in others just overwhelmed. It’s a painful place to be in.

One thing that has helped a lot has been reading Mary O’Hagan’s memoir Madness Made Me about her terrible years of suffering and her path into advocacy and activism. Maybe because she makes herself so accessible, I was surprised that her road into paid employment was simpler than I thought it would have been. Maybe she was gutsier than I’ve been about pursuing grants, but I could see for a moment that she was in a time and place where there were opportunities for someone intelligent, passionate, aware of the dynamics of power and with a capacity to doubt all the simple answers. It unhooked me for a minute from my frantic soul searching to figure out where I’ve gone wrong or what else I need to do to try and make it across the divide of activism and into paid employment. Some of the answer here is being in an environment where the opportunities are present. I have a lot of opportunities around me and very few of them are paid, and none of them are employment or regular work. Some of the answer too is that most of the other mental health peers I admire so much and have been trying to emulate haven’t had to deal with the multitude of issues I’ve been hit with such as severe physical illness and years spent as a the carer for other people. Many have experienced one or two of the batch but being hit with childhood bullying and abuse, a repressive religious environment with queer sexuality, family violence, severe physical illness, homelessness, years of intensive caring, major mental health challenges, poverty, isolation… It’s been a complicated life.

Some days it helps to remember that for someone who has come through what I have, still being here is a success. Not having died when I first wanted to at 10 or at 18 or 23 or 27 is a huge deal. I accidentally burned my wrist on an oven tray cooking this evening and it was very triggering because my wrists were often the target of my desire to self injure – such an intense, shameful, private drive that I spent many years learning to understand and dismantle. That’s something I’m proud of too, and it’s something else I can talk about openly and with compassion when I’m connecting with someone else in that kind of pain. It matters that I can do that even if I don’t get a badge with my name on it and a pay check. I’m not useless or lazy. (I’m so scared that I’m useless or lazy)

It helps to remember that I’ve brought things out of nothing and made things that help ease pain. I’m so, so beyond sad that I haven’t been able to grow them bigger, that the DI is just a little website and a few brochures that the spiritual-cause people find too clinical, the clinical and diagnosis people find way too maverick, and the rest find too mainstream. I know it annoys in some way almost everyone connected to it because trying to find a middle ground between all those perspectives is irritating to everyone. It seemed like a good idea anyway, a safe meeting place for everyone. I don’t know. I know that some people found it helpful and if it really is a good approach I’m sorry to everyone else that I couldn’t get the message out any further or louder and that it will probably die with me. I’m just too tired to do much more. But all the little things count too, right, not just the movements that gain momentum and change the world in a big way, it’s also all the little pebbles bouncing down the cliff years before the avalanche that makes the big difference.

That’s another pincer – that what I’ve dedicated my life to wasn’t worth the cost, or that it is important, but I can’t take it any further anyway. Either way I’m swamped in grief.

I want everything to be better before the baby gets here, in an insane way I know I can’t achieve. I want the house to be organised and the back yard to be planted and clean of poop, and to have resolved my work dilemmas (do I have enough spoons to be a part time receptionist and a Mum? How can I know? I know I don’t right now – how many months after the birth is the fibro likely to still be severe? Is there any point in hoping anymore?)… I want to be a better person and eat less chocolate and watch less TV and be calmer and cry less and… sigh. It’s all so painfully vulnerable!

It’s not enough to stop living while I try to force myself through this brick wall. I’ve worked so hard to be here, and it’s not my fault the wall is so high. I need a hand over it and I haven’t found one. I have to be okay with that, at least for now, and that means letting myself grieve, and it also means going back to the things that give my life meaning and joy. If I can’t do ‘real work’ it’s okay to spend time on my voluntary work. It’s okay to make art even if I’m doing it while the rest of my household is out doing real work. If I can’t find a work related project then I’m going to make a life enhancing project I can work on on my better days and get excited about and feel connected to the world with. (hold on, my love, one day there’ll be a place for us) Not so many years ago I was friendless, suicidal, recurrently homeless, terrified of my multiplicity, and deeply wounded. Not so many years I couldn’t shower without assistance or make it through the shops without a wheelchair. I remember a time when my pain was so bad I would scream myself to sleep. Here I am, fattening with a little dragon wriggling inside me, loved and safe in my home and family that’s suddenly 3 of us and waiting on the 4th. I refuse to keep suffering to punish myself for not having recovered further and to motivate myself to reach that one last big goal I can’t seem to secure. It’s okay to fail, it’s okay to fall, it’s okay to hurt about it, and it’s okay to build yourself some kind of compassion and forgiveness out of all that blood and broken bones. It’s okay to live anyway.

What do you do when the dreams burn down? What I’ve always done, mourn and howl and dream new dreams. When the bullies make me bleed I paint my face with it and refuse to become one of them. I find my warrior and call them out on it. I run into the wilds where they can’t trap me. I’m 15 weeks pregnant and sometimes now whole days go by where I’m not afraid the baby will die. It’s the most wonderful and joyful thing, especially last thing at night when I’m lying in bed in the quiet and Rose rests her hand on my bump and all the world is just the sound of our breathing and the warmth of our skin. It’s humming with usefulness and competence on the good days, making phone calls, mopping floors, paying bills, listening to people who need a compassionate ear. And it’s pain and vulnerability, ugly and awkward and embarrassing, it’s snot dripping from my nose and making my sinuses ache, and feeling obsessive but unable to let go, and getting cabin fever from another day aching and hurting on the couch, and getting afraid that maybe I’ve complained too much on Facebook or not said enough to my friends how happy I am to be pregnant. It’s waiting and waiting and waiting and following all the instructions about forbidden foods and drinks and worrying that lying on my back will reduce the blood flow to the baby and going to mummy events and feeling weird and alienated and icked out by the overwhelming pink and pastels and brutal birth stories. It’s strangers touching me and not being able to reply to messages despite feeling guilty, and wanting to make art but feeling like it’s in a locked room and I haven’t done enough to earn the key yet. It’s wanting to but still not being able to talk to or write to this baby directly.

15 weeks pregnant is not a stretch cream or baby formula commercial. It’s life and it’s messy and some of it really, really hurts. And I’m sobbing with sadness about my career at the same time that I’m overjoyed beyond words to be pregnant. It’s feeling useless and horrible on the bad days and proud of myself for making sure my people have clean clothes and for navigating difficult conversations well on better days. It’s not a happy ending, it’s not recovered, it’s not out of danger or no longer at risk.

It’s not without pain, but neither is it without meaning. It’s precious, and it takes courage.

Finding new dreams

/ Sarah K Reece / Leave a comment

Today was a great day. I was sick for a few hours after eating each time, but that left me a few hours where I was up to sitting at my computer… And I have finished the prototype of my photobook based on my hand made art book: Mourning the Unborn. I’ve ordered the first test copy and it will hopefully be here in a week or so. Eee! Then for tweaking and editing and… I’ll be able to show you a finished photobook that’s lovely and simple and nowhere as costly as the original. 🙂

I am not good at the first time I try to do something. I feel anxious and overwhelmed and want to get it right and don’t like experimenting. If I have a hands on teacher I’m sorted, if I’m teaching myself it can take me a long time to gather the skills and develop the confidence to get my prototype off the ground. This drives me crazy and I really admire people who jump in and learn as they go and don’t worry about making it perfect first time. Once I get the first one out there though, all the brakes come off and I’m away laughing. The second of anything is a breeze for me, at least by comparison.

Soooooo, published books have been on my goal list for years. A photobook and a non-fiction self help book are so different I expect the first of each will be a challenge, but I’m determined to get off the starting block and Rose is keen to help me. I think watching me transform from puddle of sick misery to my familiar vibrant self has inspired her to help me find some project to work on in my better moments.

We had a lovely conversation about goals and plans for this year this morning and I’m a little unsettled but also hopeful and releived. I’m finally starting to be able to step back from my intense distress about not working (for pay) and supporting my family the way I want to. I’m accepting that currently I’m so ill it makes no sense to be applying for jobs. So Rose and I have been talking about projects I feel inspired by, that I can pick up and put down between good and bad hours or days, and that might develop into a small passive income stream that helps me feel I’m contributing.

Books/publications are one part of that, and the others we’ve talked about are an etsy store for art prints and so on, and instead of a birthday party every year (which frankly I’m triggered by and rubbish at anyway), organising a small exhibition of art work.

I wish things were different. But I’ve got to work with what I’ve got and where I am. At the moment, that’s very little health and a powerful need to be involved in some way that meets twin needs to feel I’m financially contributing and making some kind of difference to someone vulnerable or in a rough place. Focusing on that feels scary and liberating, and I’m hoping I can get some more of those bright moments when I light up and forget being sick to energize and inspire me through the projects. 🙂

For everyone who’s been patiently waiting for me find some way back from my misery, who’s supported me or sent me encouragement or let me know that in some way I’ve made a difference – thank you so much. You are brilliant and you help me feel like less of a failure. I so appreciate it. ❤

Into the Second Trimester

/ Sarah K Reece / 3 Comments

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We made it! We’re starting to believe we might all be okay and to look to the future and make longer term plans.

I keep trying to blog but frankly I’ve been so sick I haven’t been been able to put together a coherent post. I’ve had a few windows of feeling better which I’ve put to good use by catching up on 6 months of business admin, various bits of housework, and baking my Mum a birthday cake. Mood wise I cope with a day or two pretty well but by the end of day 3 of feeling horrible, Rose tends to take a very teary person to bed.

As far as we know, everything is going brilliantly with the pregnancy. We’re hoping like crazy that the second trimester might start to be a bit easier on me, currently I’m still losing weight and struggling to eat. We have another ultrasound later this week which is nerve wracking and exciting. Hopefully this time we’ll get to hear a heart beat.

I had a brilliant day today, after a rough morning Rose took me to meet a friend of hers who works as a doula (a pregnancy and birth support person) and we had a great conversation. Funnily enough we found parallels between her work in changing experiences of childbirth, and my work in changing experiences of psychosis which was really inspiring and gave us something of a common language. It was exciting. We also share some experiences around health problems and chronic pain, which is brilliant for me because I’ve struggled to find other people who are going through pregnancy and parenthood from these backgrounds and who can understand some of my particular concerns.

I am so excited to be pregnant, but I also have a tangled relationship with pain, hospitals, working with medical people, being given intimate exams by strangers, being told not to worry, being called a good girl by patronising people who are wearing all their clothes when you aren’t, and many other common aspects of pregnancy and labour. I have past bad experiences of not being taken seriously, of being misdiagnosed, of suffering from intense pain that wasn’t believed, or wasn’t able to be medicated, or was thought to be psychosomatic. I feel very anxious and out of my depth facing labour at times, and my usual approach to feeling this way is to do some research. I’m keen to find safe places and people to dig into this territory with and start to find my own path. As much as possible I want to feel skilled, competent, resourced, and informed. I’m scared and I don’t expect to stop feeling scared, but I don’t want that fear to run the show or limit my choices.

This isn’t the pregnancy and experience I might have had if things had gone according to my original ‘plan’ and I was starting a family much healthier and younger. It’s also not the same experience I had being pregnant with Tam. I find myself grieving for those at times, and struggling to figure out how to turn my longer, more complex history into a resource rather than the mixed bag of hopes and triggers I’m currently dealing with. I want to untangle things enough that I can begin to see the possibility of good outcomes as clearly as the bad ones – most nights I still have nightmares where the baby dies. A friend gifted us their cot and I’ve been frozen with distress at the prospect of an empty cot in the house. I cope okay with the clothes and toys and carriers and so on, but the thought of facing another loss and coming home to an empty cot is simply unbearable to me. Rose took over thankfully, and it’s been dismantled and packed away into the shed.

There’s a fair trauma history here like scar tissue all over my heart. I most hate the feeling that pregnancy is a kind of ‘winner takes all’ situation, that at the end of all this bravery and misery all is made right if we are given a live baby, and all is shown to be hopeless folly if we face death again. I’m trying to find some way to make my choices and our journey meaningful, whatever the outcome. Isn’t that always the way, with life? The challenge for all of us?

So today it was exciting to feel like I’m finding what I need! The services of a doula are sometimes seen as a kind of luxury, but right now for our family this feels like exactly what we need – support that is informed, non-judgemental, and open to the grief and trauma Rose and I are carrying as well as the joy and opportunities we might otherwise miss. And it was exciting to talk shop with someone who was interested in my ideas and experiences too. When I’m a bit better I’m looking forward to doing more writing and giving talks again, and a little work is trickling in again which is making my heart sing. I wish I could be a doula too, but for people in mental health crisis, to help them deal with a first psychosis or navigate being diagnosed with DID, or a severe dissociative episode. That would be brilliant.

Keys to locked places

/ Sarah K Reece / 2 Comments

 

I’m 10 weeks pregnant and have been so continually sick that I’ve been unable to enjoy almost any of it. I get a good hour or half day here and there, but the rest of the time I am deeply miserable. The nausea is intense, to the point where I sweat, salivate, and tremble. Sometimes even the vibration of speaking will set off my gag reflex. Smells are intense and mostly horrible. The hot weather has left me weak and exhausted. 2 months of this has thrown me into a perpetual flashback of sick years where this was my life. It’s my nightmare – sick and needing Rose to do everything. Useless, exhausted, and depressed. Housebound, often bed bound. Joint pain, muscle pain, headaches. Thinking with sad longing of my old electric scooter. Visiting friends as long as Rose can drive both ways, and falling asleep on their couch anyway. I’ve been here before and the memories are so painful. I am so tired of being sick.

I know what it’s like to have an unborn child die, and I know that one of the things that burns is hearing women who are pregnant complaining about how difficult they are finding things like morning sickness when you’d give anything to be dealing with that and still have hope of a living child. So I don’t say much.

And I don’t say much because people love to tell me that what I’m going through now is only the tip of the iceberg, that the third trimester is exhausting, that labour is far worse, that chronic sleep deprivation and caring for an infant will make these days happy memories of vigour and health.

And I don’t say much because even my own lovely doctor wasn’t particularly sympathetic about morning sickness that doesn’t involve frequent vomiting, at least until she discovered my significant weight loss and realised I have been very sick. Then she told me that actually lots of women find the first trimester incredibly difficult, and it’s not uncommon for them to be in at their doctors in tears, ashamed and overwhelmed and saying they can’t cope after all and maybe they shouldn’t be doing this.

I don’t say much because I’m grateful grateful grateful and don’t want to lose this baby.

I don’t say much.

I, who have bared so much, find myself silent and stoic, head bowed, making bargains with the universe. If I accept this, will you turn tragedy aside from my family? Does the suffering make my child stronger? I have fought shaming and silencing in so many ways and yet here in a second pregnancy after loss, I find everything has changed. It’s such an effort to share this time, I stir myself from muddy deeps and swim oh so slowly towards the surface, weighted by dread. I fear attack, fear shaming, fear all those who believe that the world is just, that good people are taken care of, that fertility is somehow fair: an indication of boon or blessing or divine right. In my mind I can follow the tortured logic and understand people’s need to calm their own hearts but my heart doesn’t understand, doesn’t forgive, it’s just dark and thick tongued and wordless and afraid.

I didn’t just lose Tam, I’ve lost those beautiful weeks and months of heartfelt joy this time around. That calm certainty that things would be okay; all the stars in their right place and me in mine. (We think we are kind when in fact we are merely happy – CS Lewis) This time around the highs are followed by plunges into deep lows. We talk with qualifiers – if the baby comes, if everything works out. I find myself drawn to stories of tragedy with children and feel like I’m falling into a dark world I can’t get out of. Infants dying in the NICU, 3 year olds with cancer, 7 year olds who drown. I feel like I was so arrogant to think that if I did everything right, I could somehow bypass more savage loss. I could move out of the underclass, plagued by poverty, homelessness, and sickness into a bright ‘normal’ place where things like this don’t happen. That I’ve suffered enough and worked hard enough, earned my way out of more pain, as if life is about what we deserve. Isn’t that the illusion all hopeful parents have? That we can build a pastel coloured wall around our children and keep them from all harm? And when harm comes to your family anyway, the whole strange pastel mummy world seems so bizarre, such a fiction of security. We lie and lie and lie, and create these strange microcosms where nothing casts a shadow and nothing ever dies, and I cannot even breathe in them.

On good days I don’t just feel better, with the health unlocks all the memories of strength, hope, and vigour. I sing and play and work and find myself for moments in the sunlight feeling connected or excited or content. On good days I feel stronger than the bad stories, stronger than the fear and the sense of loneliness and cabin fever. On good days I feel like I will be my own kind of parent, strange and deeply loving, not squeezed into the strange mould I feel advancing upon me, I remember that there’s more than one way to do this right and that authenticity is more important than people pretend, and that some mothers climb trees too and understand both the lure and the fear of the backyard after dark. On good days I can breathe.

Most days, Rose sings to our unborn child, lullabies to quiet all three anxious fluttering hearts. Recently we lay naked in the summer night and she asked me to teach her a new song, something I loved. I thought of us the week before, driving to our first scan, making ourselves face this terrible laying bare of all our hopes and illusions. We sat upright in the car seats, that willing of the body to do what it does not wish to do. We sang to each other, tears masking our faces as we breathed in terror and breathed out our last courage. I sang songs by one of my favourite artists, Nick Cave, and so in bed I sang Into My Arms to her again. There in the warm dark, her fingers tracing my skin, I felt some shadowed part of my heart unlock and found a small sense of peace. A vision of myself rocking a baby and singing Cave rather than inane children’s songs to them in the small hours. It’s the first image of motherhood that exists in my mind beyond the fears of loss and the laughing tales of misery my culture gives me at every turn. I feel like myself in that vision, and in that moment I’m not afraid.

Another night recently we go to bed and I lose my grip on the crumbling stoicism and howl with a broken heart about so many things. How different this pregnancy is and how much I want to enjoy it and feel excited and connected to our growing baby. How deeply sad I am about my business failures and losses, and all the jobs I applied for last year and didn’t get, and the career that I so deeply wanted and have worked so hard for and now… realise that I might never have. Grief, grief like losing a piece of myself. My broken, frozen system, out far beyond all certainties and lost past the edges of the maps. All these dreams. She holds me, my love. She holds me and I weep onto her chest, she soothes me running her hands along my back as I shudder with pain. I find my voice in the darkness and I stop being strong and I stop accepting the pain as my part of the bargain and a little love seeps in through her arms, her kisses. My dark and silent prison unlocks a little. A little light reaches me, and I don’t feel so alone or so afraid anymore.

6 weeks pregnant

/ Sarah K Reece / 3 Comments

I thought I was doing someone a favour this morning but I think it backfired. It turns out that nervous student on first day of placement + very hot weather + morning sickness is a recipe for vomiting, nearly fainting, and somewhat traumatising all involved. There was a lot of fluster. Sensible instructions like “don’t just feel for the vein and then get the needle and poke it in, you have to feel again and make sure the needle will be in the right spot!” were emphasised by a slightly harassed supervisor. I nearly had the opportunity to drink the special extra fun sugar water from the fridge when it was confused with the regular cool water. And I’ve been sternly instructed that however well I feel I’m supposed to lie down for tests in the future because pinning green/white pregnant ladies to the chair is hard on blood techs. I’m not sure why they don’t have sick bags handy considering how many people go woozy with blood tests – and repeat missing the vein tests especially, but fortunately those bags they send off the vials in are handy and don’t leak. Fortunately for me I’ve been doing extra work on my needle phobia in acupuncture sessions.

I’m hanging in there. Froggie is the size of a ladybug. I’m getting a lot of nausea and food cravings and aversions. Rice crackers and fruit are my friends. I wish I felt a whole lot more excited and happy but mostly what I feel is massively vulnerable, and relief that I’ve still got a stack of symptoms that reassure me I’m still pregnant. I’m doing my childcare cert 3 and applying for other jobs, and sleeping on the couch in front of the air conditioner. Rose sorted out my resume for an application last night because I was wrecked and fell asleep – it was so lovely of her and felt like old times with her helping me try and get something for work sorted out. Week by week I’m gradually getting better, but I’ve been a long way down and my energy and confidence have taken huge hits. I find it hard to share about, partly because I’m still figuring out what happened, and partly because it’s easy to swamp me with shame and guilt while I’m still so rough. The days go by very slowly, it’s taking a very long time to reach 8 weeks and our first all important scan. Just breathing. Just hoping.

Please may our baby live. Please may life make sense to me again. Please may I find my place in the world.

Women’s Baseball League

/ Sarah K Reece / Leave a comment

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Believe it or not, I’m now in a baseball league! I spent this morning running around a pitch with Rose and a couple of friends, practicing fielding and batting. I never thought this would be something I enjoy, but I had a fantastic time! Turns out the experience of sports is completely different if you’re not in high school anymore. 😉 I started to support Rose who was keen to play and also because exercise can play a huge role in improving mood and mental health. While I’m out there I’m so focused on what I’m learning there’s no room for anxiety.

Running around a field in the sunshine with my mates slowly improving my abysmal skills in throwing, catching with a mitt using my left hand – honestly, I’m bad enough with my right and using a mitt feels to me like trying to grab the ball with a waffle iron – and actually hitting the ball from time to time with a thin but of tarted up pipe… well it was awesome. The coaches don’t mind that I’m an unfit total beginner who had never even watched a game of baseball and needed every bit of lingo explained, and the feeling of catching the ball or knocking it across the field was great!

Afterwards we all had lunch and lay around with ice packs. I’ve got a pretty nice bruise from catching balls on my left hand, and some even prettier ones on my arms and chest from not quite catching a few. Unlike fibro pain, which is diffuse, bone deep, and makes me feel sick and exhausted, this is quite manageable. War wounds. I’m kinda proud. Tomorrow may be interesting but I’m planning gentle walks and hot baths.

Being part of a team, learning new skills, running around but enough stop-start for me to catch my breath, and coaches giving great advice at every step… It’s the polar opposite experience of trying to run a small business as a sole trader where there’s no guide, I have to be instantly amazing at everything, and if I’m not sure about something I’d better fake it and hope no one notices. It felt like falling backwards into a big cloud of marshmallow by comparison. Friends! Encouragement! Advice! No one to beat but myself. I think I really like sport. 🙂

The rest of today was blissful laziness watching movies and in a rare fit of American culinary appreciation, having BBQ ribs for dinner. What a great day. I am so pleased. I’ve had a real turn around this week, I’m still often pretty paralysed, but I’m having half days and whole days where I feel like myself again and life is good. I’m coming back.

Trying to get pregnant and breathe

/ Sarah K Reece / 3 Comments

Today, I called the SANDS helpline and spoke to a lovely woman. I so needed to hear that the mess I’m in is ‘normal’. It makes sense. Other people who have been here get it, in all the horrible intensity. Trying to get pregnant again after we’ve lost Tam has bowled me over. I had no idea how hard I would find it. After the devastation of losing Tam, on top of the terrible string of losses Rose has endured, by mid year things felt so right and ready. We had a donor again, I had some fantastic opportunities for my business, Rose was working…

I remember that when we first started trying to conceive, I was haunted by a death sense that took me by surprise. Trying again after loss has magnified that to proportions I can hardly fathom. When Rose crashed into severe PTSD and couldn’t work, and my own business hopes were dashed, I went into meltdown. I fought and struggled and tried to find a way through. In the end I’ve had to accept that I can’t stop it happening and just accept it and be patient.

Some days I shift my sense of accomplishment to things like – well today I’m not in hospital. I’m not costing the taxpayer money for a psychiatric bed. (which would be find if I needed it, of course, but hooray that I’m not) I don’t have a string of medicos giving me conflicting advice. I get to choose my own reading materials from the library and I have control of the remote for the tv. Plus, I’ve showered, dressed, hung out with friends, and have all my pets around.

This week has been a lot better. I’ve had a number of good days, and the bad days have reduced me to ‘useless’ but been nowhere near the intensity of 8 hour crying jags or 6 hour panic attacks. I actually felt well enough to call a helpline today – I know that sounds oxymoronic, but it’s really risky for me to reach out when I’m not okay at all, because there’s an even chance of not getting help and then I’m in terrible trouble. Today I could risk it and it helped a lot.

It feels like my life has stopped. Every cycle we aren’t pregnant feels almost like we’ve lost another baby. I’ve never cared a whoot about my own ageing, but I fell apart in the shower the other night suddenly noticing changes to my skin. I’m plagued by nightmares about my friends and family dying. Sometimes when we’re not pregnant I’m heartbroken and relieved in equal measure because at least that’s a baby I won’t miscarry. I can’t breathe properly, all the time. Remember that nightmare ten days between our ‘it doesn’t look good’ scan and the ‘they have died’ scan with Tamlorn? Like my life is on pause. Just trying to catch my breath, all the time, every day. A scream inside that never draws breath. Trying to force myself to be reconciled to something that everything in me simply cannot accept.

I feel crazy. I’ve been vaguely aware of ‘baby mad’ people from outside and never expected to be one myself. I want to be able to have a life while we try to get pregnant, and that feels impossible at the moment. I can’t fathom how that’s the case, but but right now my reality is that most days taking care of myself – eating, drinking, coaxing myself to sleep, staying in touch with my people, and so on, is all I have in me. I can’t tell you how frustrating, humiliating, bewildering, and scary that has been! It is so incredibly hard to maintain any kind of perspective and it’s unbearably vulnerable.

It’s unbearably painful to keep trying, and it would be unbearably painful to stop trying. I chose this and I felt ready and I thought we could ride the roller-coaster and walk into whatever came without regrets but now – I feel trapped. I can’t breathe. I can’t make it happen. I’m out to sea and helpless. We might get pregnant and we might not. We might carry to term and we might not. All the assurances people give us (it’ll happen when it’s time, when you’re ready, when the universe or God decides it’s right etc etc ad nauseam) belong to another world, an illusionary place where there is justice and fairness and a grand plan and some kind of certainty. I don’t live there! I’ve read the stories and talked to the people and I can tell you for absolutely sure that fertility is not fair and there is no certainty. If I knew we would never bring home a live baby I would stop right now and throw no more of my life away on this impossible dream. No more days just trying to breathe, talking myself gently through every hour, every minute. On the other hand, if I knew we were going to conceive this month and carry to term… nothing in the world could stop me. But I don’t know, and I feel powerless. How to live without regret in the face of such unknowns?

I am so frightened. I’m scared that I’ll never feel better, that I’ll have post natal depression, that I’ll be an awful parent, that we’ll never have a child, that all our friends will leave us, that we’ll have another miscarriage, or a stillbirth, or a baby who dies at 2. I’m scared that I’ll lose my mental health, my family, my tribe, my capacity to work, my lovely partner. What am I willing to give up for this? What if it doesn’t work?

Strangely, just being able to ask these questions helps so much. It gives shape and form to pain and darkness. If I can name it, understand it, share it, it’s not so overwhelming. I spoke to a stranger on the phone today and told her how agonising it has been to watch my beloved Rose suffer through PTSD. Night after night of screaming pain, to be holding her hand when she can’t even feel me there. And somewhere in all my rambling I said the thing I haven’t been able to say even to myself – Rose has loved so deeply and lost so many babies, I am afraid that if we never bring home a little one of our own, her heart will be broken beyond repair and I will lose her. I type that with tears running and my face aching with a scream I can’t sound. She hurts so much and I can’t bear it or take it away.

I don’t know how I found myself here, feeling so stuck, feeling that all my world pivots on a single dream I have so little control over. I can’t go forwards, I can’t go back. I can’t breathe. I’m ashamed and embarrassed and confused. I am good at reconciling myself to terrifying things! I’ve supported people I love through suicide attempts, I’ve built a life from homelessness and isolation, I’ve escaped communities in which I was dying and I’ve been able to grieve my losses without going back. I am good at this!

But oh, watching my love in pain. Oh, oh, my heart. Like an addicted gambler, where the stakes are everything I have done with my life until now – each month I roll the dice and hope. I can’t bring the stakes down, can’t end the game, can’t breathe.

Yes, said the woman on the helpline. It makes us feel crazy. It sends us into breakdowns. It isolates us.

Writhing like a worm on a hook. Silent because too many people already think I won’t be a good parent, or that I’ll regret it, or that I’m not up to it. Silent and frightened and embarrassed as my sense of the world falls to pieces and I’m in the biggest free fall through the deepest black pit.

I didn’t have any idea just how hard the last few months were going to be. I wanted to be able to handle them so much better! I’ve tried very, very hard to do so. And I’ve done a lot even in this distraught place that I’m proud of. I’ve helped my love find the support she needs, held her hand and cheered her on as she’s moved into an incredibly fast recovery and return to work. I’ve supported my sister through a tough time. I’ve not leaned too hard on any one person, but I have asked for help and been honest about how not okay I am. And I’m still here, still with Rose, in our lovely home, caring for our pets, gardening, looking after myself, hanging out with friends. I might have flunked college and given up on my business and not been able to write or paint and have no idea what I’m going to do for work – but I’m still here. My life has  not burned down around me. I’ve read a lot of books. I’ve even joined a baseball team, just last night, with Rose and a couple of friends. I still have my life and I’m starting to come out of the deep darkness. I was lucky enough to have the opportunity to hear a beautiful talk about supporting trans men at a local pregnancy service a couple of days ago and my heart was so buoyed by it – I love work like this so much! I can’t wait to be well enough to get back to it. Our stunning garden blooms outside my window and it feels like a metaphor on a day like today. All that hard work months and years ago, and today when I have done nothing – not even got dressed, I just sit here and watch it bloom. The effort pays off and carries me through the times I can’t do anything. I rest and it carries me through. I rest and it carries me. For that I’m thankful.

At home in the dark

/ Sarah K Reece / Leave a comment

Two full good days in a row… Today was bumpier and harder work but still good. Tonight I’m driving Rose and myself home from a family get together, musing on what this might mean and why – being ‘alternative’ seems to have unlocked something vital in me, being alive at night, ignoring the ‘normal’ world… And we drive into the largest blackout I think I’ve ever been in! The streets are eerie without streetlights and I nurse us through dark intersections with my hazard lights on and creep to the roadside out of the way of emergency vehicles. Everywhere people are roaming out of their houses to see what’s going on and the night has a strange, wild, lawless feel to it.

Back home we settle our animals and find matches and candles. We don’t want to open our fridge so we go to bed with a supper of chips and water. Blackouts were always a special time as a kid, my folks would haul out the camp stove and cook up dinner or hot chocolate or popcorn and we’d sit around candles and play cards or have a book read to us. I treasure these times when ordinary life is disrupted in a small way, like lightning storms or summer rain, they are invitations to step outside of routines and experience something different.

They can be a time between, a place between worlds. This is the kind of place I can live in, breathe in, make art in, make love in, hear my own voice in. In the darkness I’m feeling my way along, finding these strange illuminating moments of clarity, moments when the veil lifts and the pain falls away. I don’t understand it but one day I will, and until then I’ll keep going.

A Breath of Fresh Air

/ Sarah K Reece / Leave a comment

I’m just coming to the twelfth hour of feeling like myself again today, and it was blissful. For the past two nights I’ve gone back to sleep after waking early and distressed, and both nights I’ve dreamed for the first time in many months – that’s got to be a good sign! I woke this morning feeling rough and did good things anyway – gamed with my sister and had a hot cinnamon donut for breakfast. I can’t tell you how ridiculous and frustrating it is to be trapped inside a nervous system gone haywire, literally trembling and rocking with distress while doing something I really enjoy… That’s been my world lately, hours and hours of endless distress despite everything being well. But at about noon it switched off as suddenly and without tangible cause as it comes on, and the whole rest of today has been simply glorious.

Rose and I spent the day with friends, we had fun at a ball range practicing our baseball skills, had a picnic, watched movies, ate ice cream, played games, and had a great time. I am so relieved, it’s the most wonderful thing in the world just to feel like myself.

I feel so incredibly fortunate to have friends and family who are comfortable inviting me around and still including me despite the high chance of panic attacks and chronic distress at the moment. I feel so lucky and loved. I’m having to cancel a lot of things I want to do at the moment and I’m so grateful for people who get it and know that I’m not hiding behind anxiety as an excuse to get out of things, that if I say I wanted to come I really did want to be there.

The most terrifying thing about feeling this awful and out of control is my terror that maybe this is ‘me’ now, maybe this is what the rest of my life will be like. Today what helped was deciding that even if that was the case, I was still going to be part of life, to do my best to live a decent life; to be present, to care about people, to limp along as best I can however messed up and broken I feel. This thing that’s got me by the throat and is scaring me out of my mind is not going to win. I’ll fight every step of the way. How wonderful to be rewarded with so many hours in which breathing happened easily and without thought. Please let it happen again, often, please.

Superman Falling in Embarrassing Ways

/ Sarah K Reece / Leave a comment

I had a very dark night last week, unable to calm down intense distress for many hours and terribly afraid for myself. I would use all my skills to settle and even get myself to the point where I fell asleep, only to wake a few minutes later in panic again. I was able to get an emergency appointment with my psychologist and went along – for the first time in my life – in a state of hysteria. She’s diagnosed me with exhaustion, and helped me get a quick appointment with my gp for meds to calm down the intensity of my distress. I’ve now got a script from my gp for anti anxiety meds, however they are not pregnancy safe so they are a last resort.

How can this year have done such harm to me, I asked the psychologist – I’ve had much worse years! You’re thinking in terms of trauma, she said, look at all the loss and grief of this year instead. They are significant. Stop everything and do whatever you need to to rest.

So here I am. Most days have two distinct aspects to them, one in which I’m genuinely fine, even productive, cleaning and cooking and hanging out with friends. The other in which I feel like I’ve fallen off the planet. I can’t catch my breath, all of life feels without meaning or purpose, and I’m tormented by fears and existential questions that strip me to the bone.

I found this lovely series of artworks that resonated with me: Superman Falling (actually titled ‘No. Superhero’ by Ole Marius Joergensen). There’s something so terribly human about this place, this state, a kind of cultural heritage none of us would choose to have. Nobody wants to be quite this human. I certainly don’t, although sometimes I think I catch a glimpse of something beautiful in it all. At times I’m saturated by death, surrounded by the void. I feel very humiliated by it, frustrated, angry, scared.

Sometimes it feels like a punishment for big dreams, for reaching too far above my circumstances, for thinking I had answers or anything to offer other people. How the so called mighty do fall. And how people like me are supposed to conceal such terribly human frailty, such weakness. I am healer, supposed to be above such vulnerability. I also find myself feeling very alive at times, which is jarring in contrast, but refreshing too. Better feeling alive then dead, than numb then dead.

I’m not getting enough sleep, I wake early every night in a rough place and have to find ways to calm down and stop thinking about death and people who have died. I take great comfort from Rose sleeping beside me, and I bring my friends to mind and tell myself I’m loved. I read books by my little book light in bed, or when the anxiety nausea is bad I get up and slowly pace until my gut un knots. Sometimes I lie on the couch so my tossing won’t wake Rose and I pat a cat, focusing on the feel of her velvet fur, trying to be present. I stop myself calling people I love to check they’re still alive or tell them how much I love them which I’m sure would get very old at 3am.

If I still can’t settle I call Lifeline and tell them I need to hear a friendly voice. Sometimes if it’s dark I stand naked out the back and feel the night on my skin. My heart seems absolutely broken and overwhelmingly afraid and I talk to it soothingly over and over, trying to bring it back from a place of despair and terror. Distract, be present, plan. Don’t think about death. Plan the following day, plan dinner, wonder how friends are going, sit and look at our astonishingly beautiful front garden full of roses and poppies and marvel at the abundance. It will pass, it will pass, it will pass.

Today has been long! I made it into college not feeling good and spent the whole day calming myself down. I’d try to talk to my tutor and start gasping and crying. I tried sitting in the sun, reading, pacing slowly around the building, sipping water, a hot cuppa, a lot of gentle self talk, a phone call to Rose, food, changing all the words I was using about the task I was supposed to be doing, sitting with the very nice friends in my class, looking at other people’s work for inspiration, and all it helped a bit. But the moment I tried to do any work my headspace just crumpled into a big pile of trembling, breathless, unhappiness. So after 6 hours of gentle coaxing I gave up and came home. I’m currently hiding in bed, hanging onto the funny side of being someone who can and has coped with some truly terrible life situations and crises, being unable to make a print at art school – that most luxurious of pursuits that many people would give their right arm to have the opportunity to do! It’s like coping with dragons and being undone by a moth phobia. O.o

It will get better.

In memory of our Tam

/ Sarah K Reece / 6 Comments

Tamlorn was due today.

It seems so much died with them. A fork in the road and a different path forced upon us. I don’t know how that can be but it seems it is. Somewhere out there, in a different universe, two happy ladies are so bouyed by the pregnancy the work stress doesn’t tip one of them into ptsd. We don’t lose our donor, we go to the pregnancy expo full of excitement, we don’t push the business hard and wind up falling down a hole of broken expectations and pressure. Such a little thing and yet our whole year is different. Our whole world.

My sense of faith or meaning about life and death, any possible afterlife, has splintered. Sometimes we comfort each other that if they all still exist somewhere, Leanne and Amanda and Grandma would take excellent care of Tamlorn. I can’t imagine three people with more love and skills and care and humour. And maybe all the others I didn’t know so well would help too; Bethy, Tash, Nana, Bradbury, Pratchett… Somehow every possible answer seems to hurt more than it comforts. This loss makes me need a certainty about death I simply can’t have.

We are still trying to get pregnant, and it’s one of the hardest things I’ve ever done. It seems so little, but it’s so consuming! The roller-coaster emotions make me feel crazy and I work hard to hide and suppress them. Rose and I are so gentle with each other, constantly making room for both hope and grief, reminding ourselves life is still wonderful without a child, that whatever the outcome is we have each other, and yet it’s like trying to calm a storm by talking to it. Beyond our power by far! It consumes everything. Our whole world becomes balanced on pinnacles between ecstacy and devastation.

I’m always trying to manage fear. I’m frightened of losing our donor again, frightened Tam was my one and only baby, frightened of getting pregnant and losing another one by miscarriage or stillbirth or leukaemia at 3 years old. Life feels like a lottery and the bland reassurance of those who’ve won and spun it into some kind of ‘just world’ (don’t worry, of course it will work out) is balanced by the raw pain of those who’ve lost and are childless following eleven miscarriages or other patterns of tragedy and loss.

The best feeling in my world is that moment before getting up to do a pregnancy test. Everything glows with possibility. Our bodies fit together, skin warm and soft, and the morning is gauzy with the film of dreams. We promise not to be devastated, that it’s early days only, that it’s okay to grieve, we can do this. We feel strong and settled and ready.

The worst feeling is another negative test. Coming up with all the reasons we might still be pregnant anyway. Trying not to feel that empty pit inside. Patting each other – it’s okay to be disappointed, we’ll be okay, we’ll try again, while inside we’re both dying. Wastelands and ruin and fears that we can’t counter that perhaps all this is futile. It might be. The only thing that would be harder than trying, is stopping trying. What started in joy begins to feel like a trap. We can’t let go of the dream but the dream is all fire and pain. We surface from misery briefly to remind each other that life will still be worth living if we can’t have children of our own.

We claw for balance, serenity, perspective, and it’s a veneer only over so much shameful intensity. We glory in our roles as aunties of others children, come home feeling blessed to be trusted and embraced, remind each other it’s significant and meaningful and worth putting effort into. And cry as quietly as possible when we’re alone, trying not to be ungrateful. We try to protect each other from our anguish and find gulfs open between us that we have to work hard to bridge with something other than raw hurt.

The very worst of it – worse even than platitudes or instructions to worry less or being told it will happen if we’re really meant to be parents – like a divine benediction, like the gods blessing the ascension of kings – the worst of it is feeling so alone and ashamed by how incredibly hard it is, so disinclined to let anyone know because it seems crazy, and if we seem crazy maybe we shouldn’t be parents after all. The pain of longing reinterpreted to prove our lack of worth and fitness. We’re not so far into this that I can’t recall my own bafflement at ‘baby-crazy women’ and wonder why they can’t just live their life and let it happens if it happens. It so seemed like such needless fuss, such obsession, but on this side of the fence it’s the dream that drives you and it burns.

On bad days I’m glad of a negative pregnancy test because at least that means I won’t miscarry again, or break our hearts with a stillbirth, or lose an infant to an accident. I like to take risks where I feel I can survive them not working out and I’m beyond that place at the moment. I can’t bear the thought of another loss and I don’t know how I’ll find any contentment in the moment or belief that things can work out. I read of women who’ve suffered catastrophic losses and their stories leave me gasping for air, completely unable to fathom such grief. I reach out to Rose and she tells me we’ll take this one miscarriage at a time if we must and my throat closes over and I can’t breathe at all.

What helps is sitting in the night with Tamlorn’s ashes or going to stand by their tree. What helps is spending time with other people who have walked this road or walked roads like it and seeing that the trauma and pain and sense of being crazy and need to hide it are nearly universal. They are normal responses, not well understood by those who’ve not been there usually, but very much the norm, especially for those of us with losses, fertility issues, a donor, and a culture that can be harsh about queer parents. Our sense of fear and vulnerability and exposure is strong. Our need for swift blessings to show the benediction of the universe is much higher.

The pressure on us to be highly emotionally invested but at the same look calm, balanced, and even slightly indifferent, is high. We feel crazy counting days and tracking cycles and collecting clothes, and we’re aware we mustn’t look crazy because it’s only recently that queer parents were even allowed to live openly together, to both call ourselves mothers of our children, and that is still being argued in courts of public opinion that talk about deviance and harm to innocents. (homosexuality was only decriminalised 40 years ago in South Australia) We’re still being held accountable for other people bullying our kids because of us. We still get looks of revulsion when we walk hand in hand. And we are some of the luckiest queer women in the world!

We lost so much with Tam, far more than I realised at first. My cycle is still unpredictable, which apparently is common following a miscarriage. We can’t track it accurately at all – on one set of tests I apparently never ovulate or produce any hormone surges, on another I’m about to ovulate constantly – we gave up testing after 9 positive days in a row. My cycle is now a different length each month. We guess the relevant week and scatter insems through it and hope, and try not to think about it. I try to imagine a future where things work out okay, and I stop reading the anguish of the women in my miscarriage support group. Being pregnant was the most wonderful experience. Trying to get pregnant has been a kind of hell. Normally dreams sustain me and only hurt when they fail. This one cuts deep as you hold it, brings life and death unbearably close, gives me joy and takes my breath away with pain.

image

White poppy

On Monday this one white poppy bloomed in the sea of red in our garden. Rose found some comfort in taking it as a token of Tam’s nearness. We talk back and forth to our garden, to Tam’s tree. It bloomed with a thousand blossoms, none of which set fruit. Red poppies in memorial, white poppies for peace. Today we’ll take flowers down to the ocean and set them in the water. (we hold hands like widows over graves)

Oh darling Tam. Do we mourn you or ourselves? You were loved every moment of your short life, we tell each other that. At times I think all the ills of the world could be righted if we could but love it and each other the way we loved Tam. In my minds eye I see myself as a bringer of death, my womb as a coffin, a portal through which souls come into the world to die, and there’s a stream of dead babies flowing away from me to the afterlife. My soul is twisted under the weight of knowing I’m not supposed to care this much, think this way, feel these things – and of not wanting to, either. Spare me the burning intensity, the clinging awareness, the cloying emotions. Spare me 3am and nameless dread. The stakes are high, the bets are placed, and each month the dice rattle in the cup like old bones; I wear a scarlet dress to hide the blood.

Darling Tam, who sometimes seems so close, when I close my eyes I can almost see us together in another world. You are nested between our bodies, fat and pink and milk-drunk, with eyelashes soft as moth wings. Our hearts are like ripe grapes on the vine after rain, overfilled and torn open. It’s a sweet pain.

Dearest Tam, tell my people that I love them. Love them fiercely from this side of the valley. Forgive us that we could not keep you here or hold you longer. Help our hearts tear open with love and heal again with the same love, every day. Happy birthday, darling unborn. I hope you are at peace. May we find some too.

I’m still alive

/ Sarah K Reece / 4 Comments

I’m still here.

It’s really hard to fit words to what has been going on.

Things have been really hard. Nothing feels like it makes any sense. Every day I feel like I’ve fallen off the planet. I work hard at it and most days things settle by nightfall. Whatever answers I think I’ve found, whatever peace or acceptance or path forwards, none of them persist into the next day. I fall off the planet again. Whatever worked yesterday or last week or last year doesn’t work today. Nothing makes sense to me. Everything has fragmented and I’m haunted by a terrifying nihilism.

I went camping. I’ve withdrawn from my online world. I eat, I cry, I write, I distract myself, I sit in the garden, walk the dog, cook, read, focus, talk it out, and clamp my mouth over the yawning darkness in me and sit meekly on the edge of the lives of people who are doing okay right now and kind of bask in their warmth. I remind myself that I’m loved, valued, okay, accepted, and deserve to find some peace. I try not to lean on anyone too hard. Other people try to help me feel something, they talk or listen or make suggestions or help me do things. Take me to the beach, or out for ice cream, or share lunch with me or just reach out. I’m being patient because it’s all I’ve got.

I’m not suicidal or starving or self harming or at risk in any of the conventional senses. I’m not sure what’s wrong. I’m anxious and depressed except not exactly. I’ve got ptsd sort of. I’m kind of grieving. I’m going through an existential crisis, possibly. It’s exhaustion, in a way. It’s regression, somewhat. I don’t know. Nothing exactly fits. All of the above. None of the above.

I’m still alive though. I’m having a really rough time. Crying until you throw up rough.

Most days I also find a place where I’m okay – just okay – or even really okay – contented, happy, settled, baffled. I slip into bed between my love and a cat and my skin is thrilled by the soft feel of the blanket and the warmth of cat and skin and I feel nested and safe and loved.

Every bit of perspective I garner is gone the next sleepless morning when nothing can settle me. My vulnerability is overwhelming. I am scared, confused, angry as hell, exhausted, frustrated, and I want my life back. I’m holding onto one college subject by my fingernails. I sold a beautiful painting and felt for the whole rest of the day that everything was going to be okay and I had a place in the world and things would work out. It’s like I’m living a kind of nightmare groundhog day. I spent savings on fuel to go camping because under the stars is my best psych hospital usually and it was great and it was horrible and I think it helped… I got home to sick pets and bad vet bills and sick Rose and I’m currently on antibiotics for a sinus and tooth infection and just had a root canal re-drilled and packed. The garden is glorious. My system feels like it’s been turned inside out and put back together by a 2 year old. Each day I make some sense of things that feel inherently senseless and find a way to live. Each new day I have to find another path. It’s not leaving me much time to actually live, achieve goals, be useful, get my dishes done, enjoy my life, or even connect with people I care about. Reading calms me down, as does watching movies. Both have clear narratives and they are soothing when I feel like I’m freefalling – things are cogent and march towards conclusions.

I’m determined something will change. I will process what I need to process, grieve what I need to grieve. I’ll let go of each tooth and find some humour in my bewildered sadness, let go of my grief about goals like having better health insurance, savings for tooth replacements, a good paying job. I’ll go hunting for more information and approaches to find something that helps. I’m not giving up – I’ve worked so very hard for this life and I want so much to BE here and be able to feel it and connect and be in it. I don’t know what’s gone wrong but I want to come home.

Looking for windows in dark places

/ Sarah K Reece / 2 Comments

Right this very moment in time, I am utterly content. It’s 5am and I’m still not asleep because sleep seems to reset the anxiety and I can’t get bear to let go of this moment just yet. I can breathe. I’m in bed, or rather, I’m on the couch in the loungeroom with Rose sleeping bedside me and the animals all around, because we thought a change of environment night help. It’s dark and quiet and beautiful.

The past 6 weeks or so have been hellish. Stuck in chronic distress all I’ve been able to do is look for windows of time when things are not so bleak and soak up what I can. Rose is on her way up I believe. Not back to her old self yet but certainly her windows of good time are getting bigger and lasting longer. And I think I am too, a bit slower and more bewildered, but starting to come out of it at times. A couple of nights ago Rose sent us to bed alone with journal and pen and candles lit and for several hours we were in no pain at all – gone, like turning off a tap. But that night in sleep it all returned.

Today I had a remarkable conversation with an acting student about the making of art and being centered. She was so grounded herself that just being in her company I felt myself calm and settle into some unreachable peace. When I went back to class the trembling nausea and catch in my throat returned, but the memory of that peace wasn’t entirely gone and all afternoon I cultivated it.

I’ve had the most wonderful evening I’ve had in weeks. Friends came over for dinner and hugs and games. The lovely lady who bought my first print left a beautiful comment on this blog and I felt a tiny flicker of warmth when I read it! Someone asked for a referral locally and I felt a tiny sense of looking forward to getting that professional support referral project up and running for my networks… The joy of that! To feel things again! To care about my work again!

When it’s gone it’s so terribly gone though. A couple of days ago I phoned my mother from bed, so distraught she cancelled her day and came straight over. I spent most of it crying. There’s been many days like that. I coax myself into housework and college and doing my best to function, and I sob inconsolably the rest of the time. Focusing, meditation, conscious breathing, journaling, warm baths, sitting in my garden, distractions, good company, and all the millions of other tools I have to manage tough times seem to do nothing.

Yet, in the presence of someone deeply calm, something in me calms, like a distraught child being taken by the hand and walked through all the dark and scary night back home where it’s safe, and realising on reflection that they weren’t so far lost after all. It’s infuriating. It’s wonderful.

I had a sense today that following my transformations this year, in some ways I’m exactly the same highly strung, passionate, intense persons I’ve always been. But in others I am totally different – approaches that used to nurture me now do nothing, while I find myself deeply moved by approaches that have always been useless to me. Something has changed, and I don’t know it or understand it very well yet. I have the sense of myself – my body and mind, as a new kind of instrument I don’t yet know how to play or care for, don’t yet know how to hear the warning signs of problems, or nurture to get the best music from. It’s been a harsh lesson, like leaving a guitar out in the rain! I’ll learn. I’ll do anything I have to do.

Right now I’m going to surrender to sleep, and try to accept with grace the possibility that tomorrow I’ll be a trembling overwhelmed shadow of myself again. I can feel the lump in my throat, the bite of nausea. It was real, I did find a window, and I will find more. I’m going away shortly, camping with my sister in the hopes that this time my night under the stars will be helpful and reset some of this anguish. I hope the dawn is near for me, I do. I am grateful to be reminded of the humbling sweetness of those who have very little being kind – how few of us who live privileged lives ever get to feel that? It flattens those hierarchies of important people so quickly, stings but only our pride. You can’t look at people the same way when last week you were so broken and they so kind. They become your equals, even your teachers and mentors. Always learning, always something to learn.

Wish me luck.

Tam’s tree

/ Sarah K Reece / 6 Comments

If I’d been able to put something up here three days ago, I’d have said we were going okay. Rose held my hand through the stall at the Pregnancy Loss walkathon. It was just like old days, her stalwart, me skittish. Not many people were interested in the stalls, but I did sell one print.

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Two days ago I’d have said I think we’ve turned a corner. I let go of all my fears and plans and expectations and found some sense of ground beneath me, the present moment full of light and glory. For a couple of days I could breathe most of the time and coax Rose into doing things that helped us both feel more alive. I so wanted to write that post and share that news. We made each other laugh, even in flashbacks and darkness, and the darkness was less dark, less painful, less total.

Today, I couldn’t sleep for hours. I’d settle then startle awake to some concern, personal or existential. I deeply want to caretake my people and my networks but I’m too heartsick to do it. I can’t get back on my horse. I can’t be inspiring or hold hope or protect or save or make things better. I’m here, in the mud, too injured to climb back on my horse. Here in the mud, knowing that my life is beautiful, my tribe is beautiful, that I’m vomiting pain in a life I’ve worked so hard for and built so painstakingly. I’m peirced through by a sense of failure and loss and my own woundedness. My baby died. My love is hurting. My business runs at a loss. The word ‘recovery’ is like a spear in my side. I want to be riding my horse. I’m just going to lie here and hurt.

I know some of you are in the mud too. Broken dreams and hurting hearts. A memory of strength and energy and courage. And it’s so desolate and desperate. I know I’m not the only one and I’m not alone. Whatever your life looks like on the outside, you can choke on pain. Something inside screaming out for help and nothing you do calms it. Working hard to do things that might help, to shore up the river banks and sand bank the doorways against the sense of self hate and defeat.

The day with my art prints stall was very long. I took some art supplies and started a new oil painting. It’s Tam’s peach tree in bloom.

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Happy three years to Rose and I

/ Sarah K Reece / 1 Comment

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Sometimes you celebrate each other from the tops of mountains, when things are going your way and the whole world glows with possibility. The wells are full to over flowing, the larder is stocked, the roads are wide and smooth, the sun turns the world to gold. Love is easy, forgiveness is easy, kindness is easy. All things are in abundance.

Sometimes the path is narrow, twisted, bewildering, faltering into bogs and falling over cliffs.

I love her because even when I’m scared I’m not scared of her.

I love her because even when she hates herself she’s gentle and tender with me.
I love her because when we have very little, what we have she shares with me.

At night at the moment we both toss in the dark, dream-wracked and afraid. Sleeping in shifts between storms of tears, a broken voice crying out, the shudder of nightmares under skin. We bump along like two boats in black water and a moonless night, kissing hulls to be sure there’s someone still there. Over and over we turn to each other, hands reach like a bridge over the gulf, feet tangle like vines around each other, lips touch shoulders and we murmur soothing sounds or sing snatches of lullabies to each other. Stroking fevered faces, calming the hair back against arms, the arched back to rest again into soft bedding. “Love, love” we croon like doves, the inarticulate language of night; sharp cries like gulls, and the hushing of mothers half sleeping, voices a deep soft purr in the chest.

Adventures are tricky things. Reflected on from comfort, the sharp edges dull a little, the black nights turn pearl grey in memory. Here in the moment it’s stark with presence, bright as a papercut, a piece of glass in the shoe. It’s not called an adventure if everything turns out according to plan, if there’s no dark nights, no fears to conquer, no cost.

In the full glory of a spring day, sunlight on her bronze skin, her mouth open with laughter, her eyes full of light, she is beautiful. In the dark hours of the soul’s midnight, her body painted with pain, eyes closed against the burning memories, lips drawn back hard against teeth, she is beautiful. It’s a different kind of love that grows here, threadbare, harsher, there’s pain woven through it, and bone for strength.

She holds me in the shadows, sings peace to fall like rain down upon us both. I have seen the moon bright and full, and dark and empty. I know her in triumph and tragedy. There’s still love, in each place, the thing and the shadow of the thing. The rainbow and the rock beneath.

Places to rest

/ Sarah K Reece / 3 Comments

It’s 5am. I can’t sleep. I have terrible vertigo and hives all over my body. I’ve been reading blog posts by Jenny Lawson and Will Wheaton about depression and anxiety and I’m curled up in tears and feeling less crushing alone in my black pit than I have in days. I’m really, really tired. I’ve been trying so hard to find a way through this godawful smog in my head, looking for hope like a starving person, doing my best to counter the black rain of failure and despair, yearning with everything in me to be able to feel the kindness and love people are giving me. Sometimes I can, for an hour or two. Often I can’t. I want to so badly, I do everything I can to hear and receive and take in and believe, but I’m on the other side of a wall. I don’t mean to be. I don’t want to be. I promise I’m trying, but it’s bigger than me. All the want in the world isn’t making it go away.

Reading tears in rain by Will Wheaton, I felt a sense of relief. That feeling like a failure and being a failure are not the same thing. That people who have successful careers also feel the crushing insecurity I’m struggling with. I’ve collected my box of art prints for the walkathon on Sunday and I think they’re beautiful, and at the same time there’s a kind of violent rejection of them, bile in my throat, fury and exposure and loathing and a desire to destroy them, to burn down all the tiny dreams that are still breaking my heart, still leaving me vulnerable to this feeling of failure, this sense of not ever being good enough. Quivering with distress I step back from them and try to breathe.

Yesterday morning I had terrible vertigo, I was crying out and holding onto the bed because the room was flipping around me like a car being tumbled down a cliff. Rose got me a vomit bag and cold water to sip, then held me tight and sang to be until I went back to sleep.

Last night I filled her water bottle and got her a vomit bag when the flashbacks got bad, held her close and sang to her until she fell asleep. Nights are hardest for her, mornings for me. We’re limping along together. How much I love her.

Two days ago we took a friends kids to the show together and it was a beautiful day, all day. We spent the whole day on toddler time, moving gently, lots of rest, lots of snacks. We got stuck with a half hour wait for the train at the end of the night and each took a girl to sing her to sleep. Rose with the 7 year old cuddled up and dozing under her arm, me with the little one in a sling pacing slowly around them. Each of us looking at the other with stars in our eyes. A quiet place, in the night between trains. No panic attacks and hardly any flashbacks that day.

I can’t beat it from inside. I watch for the windows when it’s less and do what I can then, take in what I can. I’m so tired, and so tired of feeling guilty and responsible. It’s a bit of cruel joke to feel so awful and feel worse about failing to stop myself feeling so awful. I don’t think I’m going to make this better, just breathe inside it, don’t destroy anything, and wait to heal. I’ll bloom again.

It’s not my fault, right? I don’t think it’s my fault. I didn’t mean it. I’d stop if I could. I’d make it all better if I could. I’m trying. And trying to find places I can rest from all the trying.

Jude Blooms

/ Sarah K Reece / Leave a comment

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Jude, the rose that Rose and I bought on the day of our engagement, has bloomed. He’s so beautiful.

We’re still here. It’s been a long week. I think the downward spiral has arrested. We spent Wednesday night in the ER because Rose was suffering chest pain – almost certainly muscle strain because of her extremely painful flashbacks, but you can never be too careful with sudden chest pain so in we went and they kept us all night doing tests. She got the all clear at 7am. I slept for a couple of hours in the van out the front of the hospital while she napped in a dark corner of the ward.

We’re breaking the new, devastating patterns, with help. Rose has a new trauma therapist on board, I’ve been reading up on Focusing and holding onto my people’s belief in me as a decent person. There are still very hard hours in every day, but at no point in the past two days did I feel like I was dying. I managed a full day of college today, and started a new oil painting tonight, despite some pretty intense anxiety and stress. Art as business is not doing kind things to my head. Last night I went for a late night walk with Zoe and found the world shifted and poetry came back to me.

Dropping the ball like this means a juggling act to keep up with those responsibilities I haven’t dropped. I’ve got major preparation work to do for a stall in a week and I’m worried about it. I am still giving talks here and there – they’re stressful but also like small lifelines for me currently – feeling of use is the strongest antidote to feeling like I’m dying.

We’re limping on together. When she’s happy, she shines. I love her to bits.

Holding the Fort

/ Sarah K Reece / 3 Comments

Rose is rough, I am rough. I’m holding the fort, for myself and with her too. Just holding on.

We’re swimming in trauma reactions and broken bits of our hearts. Deep wounds and deep grief. PTSD is incredibly hard, very unfair. It exposes when we most need protecting, makes us tremble with fear when we most need comforting, turns the world dark when we most need the light.

I’m trying to find a way through the stories – that this is real but also that the fear it brings with it – that this is permanent, is not real. There’s such a tangled web of truths and lies and fears it’s hard to find a way through. I find myself falling with relief back into the stories where mental illness is compared with physical – for all the problems with those analogies they also fit and give some shape to the pain we’re in, some way to make room for the suffering and argue for understanding. My poor love is devastated with flashbacks and I find myself debating whether I’d say ptsd or epileptic fit if I needed to explain why we needed help in public to a stranger… It’s debilitating and I can’t navigate the complexities of what has happened to us any more, I’m back to needing the basics of something I can fit in a sentence, something I can scrape clear of the rot and find a place to stand on. Illness. Injury. Whatever. A real thing, a powerful thing, that wishing or trying hard does not make go away. We are dealing with a thing that is bigger than us, and unfair, and very hard, and we are doing it the best we can and each day hoping tomorrow may be better.

And yet, as I drove up the freeway today, looking for a way to pass an hour without the darkness obliterating us both, I felt that knot of pain in me, the thing in my throat I can’t breath around, the indefinable thing that is and is not pain or fear or grief or any thing I can put a word to… just some kind of deep hurt that I can only recoil from – something unbearable. Which is bizarre to me, because I’ve been through so much that was unbearable. So much worse than this! And alone, and in agony, without hope – I’ve been here before and yet this is a new hell, unfamiliar, and I’m without assurance that I’ll come through it. I can’t feel that.

I wondered for a moment what it would feel like if I stopped doing all this to try and ‘get better’ or feel better, if I stopped the self care, the patience, the determination, all the ways I was approaching this pain, and let it be instead. Instead, in fact, made it welcome. And the knot came undone, in my throat. I could breathe for a moment, I was in pain but it wasn’t beyond bearing any more. It just hurt. I didn’t have to run from it or bind it up or try to heal it. I could just be with it. Recovery never looks the way people talk about it. Tonight, I’m feeling the black rain falling under my skin. I’m patient and mostly I’m holding the fort. Some moments, I slip into the slime and under the water I can hear the sound of my dreams dying.

Some moments I read blog posts like Celebrating my blog from earlier this year, and come across lines like “I’m actually starting to take some positive feedback on board for the first time since I was a child. I can see clearly what I’ve been doing all these years with this work.” and the contrast is so great it’s almost unbearable. How did I lose this? How completely I have lost it. Only the memories haunt me.

I have spoken with a few close friends lately about all the losses I’ve faced in the past few months, particularly around my business. So many wonderful things have been cancelled or rescheduled or not come to pass, none of which I can really talk about. I thought I was ready, and to the sound of enthusiasm and support and a sense of community, I’ve jumped. I tried to fly and instead I’ve fallen. Each loss or dead end or deferred hope alone was manageable, but my world has been full of them lately, and I simply can’t buffer them, not in my situation. Everything has an impact in my world, financially, and on hope and energy. I rolled with the punches for the first few, but somewhere back 10 losses ago, I lost key things I need to keep going and didn’t realise yet until there was no more world beneath my feet and I was falling into a dark place.

I am trying to send cards or letters to anyone who has supported me and I have managed one so far, which I nearly threw up with stress to do. So vulnerable, nerves scraped raw and heart broken. I simply do not understand why anyone would support me in any way, let alone a stranger or near stranger send me money. I want to understand it but right now I simply can’t process that what I’ve done has helped anyone or that people might wish to be as madly generous to me as at times I’ve been to others. It’s a simple equation I know, but I can’t make it come out right in my mind. I hope it will again.

I was talking to someone kind the other day and when I listed all the losses, one beside the other, of the past few months, they were shocked. “Deep grief” they said to me. “Of course you are worn out, that’s such a lot to deal with, and such a shock when things seemed to be going so well!” Shock. Could that be the reason the sun seems dark? The reason that people telling me, over and over, that I’m okay, that I count, that I’m enough, and that I’ve done some good in the world simply doesn’t make sense to me? Is this how shock feels on the inside?

“Stop asking what’s wrong with you!” one friend has said to me – “of course you’re struggling, it’s been such a hard year! You can’t take hits like that and not need a break.” And I think of life cycles and cycles of energy and of day and night and life and death and needing to stop and retreat and weep sometimes to find that joy in life again. I think of going on without stopping through one loss and then the next and the one after, still smiling and still hoping and still wringing hope from my heart while the politeness became and mask that slipped and gouged into me and my heart choked.

“Deep grief” I’ve written on my wrist in permanent marker, to remind me – this is why it hurts so much. There’s a real reason, even if it doesn’t make sense in my head. I’m not just broken or crazy or doomed. It will heal. I will see the light again. And this thing that feels unbearable, I’ll find a way to live with, like I have all the others, right. Right?

For now, holding the fort.

Our own personal hells

/ Sarah K Reece / 6 Comments

Dear lord. Sometimes life makes sense and feels manageable and there are plans and directions and a sense of hope. And sometimes life is just… white water rafting, when you thought you were going hiking. When you packed for a picnic after a bush walk up a hill. And brought your favourite collection of sharp, spiky implements, your best boots, and certainly no paddle.

Guess I’m still human after all, spiritual awakening and all. At the moment I wake up many times in the night, full of deep dread and horror about very small unimportant matters. The feelings are nebulous, intense, and difficult even to name. It’s taken me a week to begin to be able to discern each flavour independently – there’s guilt, there’s failure, there’s grief… Often it’s just pain, a kind of bleak anguish that’s unbearable. It can’t be sat with, can’t be visualised away, can’t be un-fused from. I took myself down the beach overnight, and instead of finding peace I sat alone in my van, arms flung wide, begging for help, for peace, for respite, before falling into brief exhausted sleep, only to wake in agony again. The sudden decent, the depth of it all caught me by surprise and left me reeling.

Each morning I wake feeling something I can’t really name. It’s not self destructive, I don’t feel the urge to self harm, I don’t feel suicidal, exactly. It’s unfamiliar and horrifying. The only way I can describe it is feeling like I’m dying. I have no sense of hope or a future at all. My throat is half closed and I can’t breathe easily. If I manage to meditate or focus or in any way create some room between myself and the feelings, I relax and immediately go back to sleep. Then I wake 20 minutes or so later, intensely distressed again. It’s demoralising and exhausting.

I’ve been reaching out to people. The only thing I’m finding helpful at the moment is the kindness of my tribe. I feel lost, and I can’t see myself clearly any more. Other people holding hope for me, telling me that I am not worthless, that I do contribute to the world or their world in some way, are holding a mirror in which I do not recognise myself but I can at least acknowledge that this might be me, even if I can’t feel any of it right now.

It’s a kind of hell. I’ve appreciated touching base with others I know go through hells like this. I’m finding that I come in and out of it. I can talk about it quite calmly now. Tomorrow morning is likely to be another world entirely. In it I feel stripped, vulnerable, defenceless, frightened.

Rose is in a hell of her own. Flashbacks can be devastating. Hers can be severe and completely overwhelming. We’re slowly finding what helps, but it’s all from scratch. Nothing that’s previously helped is working. So far company is better than being alone in them. Children or animals are deeply grounding and the best approach by far. I can hold her hand and sometimes talk her through it or sing to her. A wet cold cloth on her face and neck helps. Sometimes weight is grounding – I cuddle her or Zoe lies on her. Sometimes a dog lick will break her straight out of it. None of the other grounding techniques she usually finds helpful are working. It’s a slow trial and error kind of process.

One of the things I love about her so much is that even when she’s in hell, she’s kind. I was a wreck this morning and so was she. But she still got up with me, cut me up veggies for lunch, and dropped me at the tram. Our night was bookended by her flashbacks until 1.30am, and my unique brand of existential misery at 5am. There were still cuddles and gentleness, reading Harry Potter to each other, back rubs and sympathy. I’m lucky and I know I’m lucky. ❤

So, I’m trying to clear the decks as much as I can without actually destroying any of my projects. I’ve talked myself out of closing down my business and the networks for now. I’ve wrestled with the mess that thinking of my art as a business creates in my head. I’ve failed and fallen over and messed up most of my attempts to follow through with my goals over the past couple of weeks. I’ve failed to finish an essay and had to withdraw from another class at college. I’ve answered a few emails that I could open and read and still breathe while replying to. I’ve cried in the toilets at college when hearing about a couple of people with DID who killed themselves. I’ve reached out to people who are being kind, sending messages of support or telling me how they see me, see my work or believe that I have a place in the world, who recognise their own dark hours and don’t judge me or think less of me. I’ve been grabbing hold of anything that resonates, reading about focusing, coherence therapy, moving towards the pain, and just holding on, minute by minute, waiting for something to change.

I found a sentence that I loved recently – being in the land beyond the maps. I’ve felt like through so much of my life. Multiplicity, psychosis, my art, grieving Tamlorn and finding myself in an experience of profound awakening… If you walk the paths you will end up where all the others who walked those paths went. Paths are what we crave most when we feel lost. The certainty of hope. We’ll trade in almost anything for it, and bind ourselves into lives that don’t fit us at all. What’s much harder but much more likely to take us somewhere amazing is putting together the skills and tools and resources we need to make our own path and follow our own stars.

But hell, it’s not always easy. I guess one of the things I’ve been doing in all this pain is taking up my rightful place in my tribe. I’m not some kind of guru to follow. I’m not a shrink. Even the idea of ‘peer workers’ who have recovered and have some kind of wisdom to pass on doesn’t feel real comfortable. I don’t have the answers and I can’t take away anyone’s pain. Sometimes I help people and sometimes I need help, and that help is mostly in the form of simple kindness and connection. I’m as human and fallible and full of doubt and uncertainty as the next person. I know a lot about surviving hard times and sometimes that’s brilliant and sometimes it means almost nothing.

Thank you, those of you who have reached out. You who share your own hard times honestly. You who – for reasons I can’t really fathom at the moment – send money or support me in some way. Thanks so much for being part of my world and not hating me when I lose my way. You help me not hate me too. I’m glad to not be alone.

Holding hope

/ Sarah K Reece / Leave a comment

Some days I give hope and some days I gratefully receive it.

Rose and I are having a tough time. Flashbacks, panic attacks and terrible depression are our normal right now. We spent an hour on the couch today weeping over Tamlorn’s ashes.

Kindness and care from our loved ones helps. When I can’t feel hope any more, they hold it for me.

Even on the days when it feels like we have so little to give each other, we are kind at least. It’s not everything, but it’s not nothing. Even on a day as black as today, we have small victories to celebrate.

Courage

/ Sarah K Reece / Leave a comment

My beloved is having a rough time and it’s breaking my heart. She’s been home all week with terrible flashbacks. I’m juggling college and everything else around trying to help her feel safe and supported. And I’m sad. I’m terribly sad that I can’t stop them or make it better, that I can’t fix our money stress, that I’m half drowned in anxiety and dislocation myself. I’m sad because small business start-up means facing more disappointments than I feel I have in me, more opportunities lost than my heart can handle. I’m sad because my cycle is really out by an extra couple of weeks and the wait is interminable.

I’ve finished gilding my print, and I’m proud about that. She is truly beautiful. The rest of my week, my appointments, and my to do list scares me. College feels unmanageable. Even catch ups with friends scare me. I feel uneasy about almost everything, unsettled, like I might bite at a hand even if offered to comfort. My buffer between the world and a big well of vulnerability and doubt is very thin.

But I’m here for my Rose, however I can be, and I’m here in my home as best I can be. Today I spent all day in my pyjamas and I soaked up the sunlight in my backyard and watched the rainbows dance from the crystal hanging in Tam’s tree. I cut Rose and my sister’s hair, and sat peacefully dogsitting. I finished The Matrix trilogy and cried. And when Rose needed me to I sat with her and stroked her face and talked softly and got her a drink or a cold flannel for her face. And when I needed her she held my hand while I cried softly. If there’s not much courage or hope left in me for anything else, it was still well spent. Everything and everyone else can wait.

Rose’s Birthday – the Lowlights

/ Sarah K Reece / Leave a comment

It’s been a full on week with so much going on I’ve been feeling stuck about sharing here… more than that, detached, disconnected from my online world which is so often my territory and my haven. Heartsick. I kept trying to write about Rose’s birthday party and finding myself feeling like I was writing spin when I only shared the good parts, or that I was omitting the bright things when I shared the tough parts. In the end, Rose suggested I write both as separate posts.

Her party was awesome, and it was tough. It was a super child-friendly space but I didn’t feel comfortable letting my kids come out because a lot of those who came were not multiplicity literate. I did out myself ‘casually’ at one point, heart beating hard. In a year or two they’ll be more ready. I can be patient, I’d rather grow something strong than tip over the boat. So I took refuge in adult roles, feeling how my own sense of agitation dissolved as I sank into something familiar and reassuring and… bounded. I didn’t have to know anything or answer any of the dilemmas that were doing my head in, I could just be, and I could be good at it. There’s something to that, I think. I don’t know what yet. Roles can be dehumanising, and yet the lack of them can be… a kind of exile. Skinless and formless and falling into space.

Rose and I were both busy and the week leading up to the party was stressful with money woes and welfare issues and a lot of work… and this was our first month of trying to get pregnant again since Tamlorn died. It’s been so hard! We both thought we would ride it out okay, we felt ready and excited and ready to pace ourselves and ride out the highs and lows… instead it’s been incredibly tough. It’s brought back the loss of Tamlorn keenly. We’re both having nightmares about babies, feeling grief and loneliness and both feeling that we shouldn’t be feeling much of anything, that we need to hide our sadness and fear. It’s not an easy place to be. My cycle hasn’t returned to normal since the miscarriage either, so we started our ovulation testing and got a ‘high fertility’ result a few days earlier than expected and started doing insems. Usually I get one or at most 2 high fertility days and then I ovulate. This month, I got 8 high fertility test results in a row, and we did 4 insems before giving up. About 2 weeks late, I finally ovulated over the party weekend and was in pretty bad pain on that side for about 20 hours. We’ve noticed that I seem to have a pattern of less reliable cycles and more painful ovulation on one side – good month, bad month, good month… which should mean next month is better. We both know this, yet there’s such sadness at the same time, a kind of quiet despair that sits alongside, or beneath all the other things, all the joys and silliness and hopes. One is not more true than the other, one is not a mask to the other. Both are real.

Many of our friends are vulnerable in some way, and the weekend has been triggering for some of us. Rose had a major flashback that’s left her reeling, vomiting with stress, having nightmares, and needing downtime – pj days to recover. We are pretty good at dealing with these now, and so we’ve been going to sleep clothed and reading Harry Potter to her. One friend became too overwhelmed to make it down, another came but was overloaded in the aftermath. I was doing great until the last night when one of the more distressed members of my system woke to the sounds of a storm and then woke Rose sobbing… we ended up out in the wild wind on the front lawn, wrapped in a blanket and watching the dawn come in because when we were outside we were calm and centred, but indoors we were hysterical and about to vomit. We settled outside, reaching a place of acceptance: that she felt completely out of sync with herself, Rose, and our body – and deeply distressed by that in comparison with how others of us have been feeling lately, our awakening sense of connection and security highlighting her sense of being profoundly lost and in despair.

Out in the wind the pain eased and that part was different, freer somehow, more powerful… recently I was exploring some archetype cards with a friend, and each card has the shadow and light characteristics of each archetype on it… I wondered if we have lost sight of her light qualities, if we only know her in shadow, in trauma and disconnection and pain.

Finding a sense of safety and helping each other feel safe… these are such valuable skills to develop. They are a key part of what Rose and I offer to each other on hard days, of how we try to treat our friends and what we ask from them. Making it okay to be human and okay to take risks and feel pain, to struggle at times, to be wounded and fallible. One of my lovely friends sends me texts when I’m struggling that say “It’s okay to not be okay.” It seems to me these qualities are so often linked to ones that it’s easier to value… those friends I know that are struggling with the darkest depressions have such kind hearts. It’s not easy to have a heart like that in a world like this. But we’re all so used to being treated badly when we’re vulnerable and being made responsible for it – this mad idea people seem to have that we can make ourselves feel other than we do, and that this would be a good thing – that we conceal our soft underbelly and our broken hearts and our bad days, and those who would be gentle or understanding never see that side of us, and we never get to see or feel their kindness.

Sharing is vulnerable but also powerful… seeing and being seen. Learning to create safety for humans, in our relationships, our families, our tribes, within our own minds and hearts. It’s such a challenge and we can’t do it entirely alone. We weave it back and forward between us, in our listening and our not hearing, in our seeing and our willingness to be seen. In the way we step outside of our roles and are human, flawed, and vulnerable and imperfect, full of brilliance and insight and deep feelings. This is what it is to love.

Scattered and lost

/ Sarah K Reece / 3 Comments

Projects all around me, that constant sense of guilt over each one left unattended too long, each email I still haven’t replied to. My work is unconstrained and spills over in all directions, leaving my desk awash in paperwork and my mind bewildered. I’m don’t know where I’m going or what I’m doing or where to focus. I can’t tell if I’ve taken on too much or I’m simply not organising it well enough. The pressure to make income is like a great weight, bearing down on me. I think without that, I’d be feeling merely scattered. With it, I work and I achieve things with a background of constant despair and a sense of unending, quiet failure. Nothing I do is enough.

Today was madcap. The Cat Who Must Not Get Out has taken to hiding near the door and making runs for it. She made it outside twice today, each heart stopping and horrifying. The second time she was determined to escape and we chased her, Rose and I, nearly in tears, around the house and over fences and part the neighbours before catching her and locking her in a room.

I spent the morning washing dishes and cleaning, remembering that this is part of my life too, keeping house and caring for my family, making sure there’s food and enough clean space to think in. I’ve put all our nuts and seeds in jars for cooking and snacking, the grease from our kitchen has made them all sticky, reminding me we need to sort out our terrible extraction fan that blows rather than sucks grease.

I write back to some emails at random, double check dates and make sure my diary contains the things I’ve promised to show up at. If it’s not in my diary, I’m lost. I write the first of the thankyou notes back to those who have helped me over the past few months, put my last stamp on it knowing it will probably be a week or more before I remember to post it.

I pull all the files out of an old magazine folder and rename some – projects, networks, college, hoping to help me find paperwork I keep losing. I make a mental note to buy more files. My to do list drops by two items, four more are added. Some days I start adding things to my list as I do them, so I can cross them out. When I emerge dazed several hours later it helps to have a record of what I did and how the time was spent. My computer is in the coldest part of my home and I’ve noticed I’m frequently chilled and highly dissociative while working. A heater and hot water bottle haven’t much been helping, I need an electric lap blanket or better – to plug the windy gaps around the door. Something else on my list.

I have a master to do list and then an urgent one and then my daily one, and I have a calender to track my week which isn’t being used at the moment because there’s always something more urgent than getting it sorted… The mess compounds. Last week I sorted three boxes of paperwork and recycled half of it. I think spending a couple of days letting the urgent things go and just sorting the system itself – the files, the desk space, the storage, the calendar, will help pull things back together. It’s Wednesday already and I haven’t done any homework this week or bought my printmaking supplies for Friday. I can’t do that until I get paid on Thursday anyway.

I’m trying to understand and prepare marketing resources, but it’s impossible to market myself when I can’t remember what I’m doing or why. So much of life as a multiple is trying to track more than one stream of information, and my life in particular with many things on the go at the one taxes me to my limit regularly. I wake up and everything I haven’t done yet hits me in the face like a rock. I know I’m losing track and that feeling, that sense of things slipping through my fingers, of chronic guilt and uncertainty, of my underbelly showing to the world, it’s so destructive.

Most multiples work so hard to look like we’re not, we conceal switching and hide amnesia and suppress all the clues to our identities… I recall how exposed I felt years ago merely in deciding to put all our DVDs on display… In my mind I’d imagine profilers visiting and diagnosing me on the spot. This is that again, the sense of vulnerability and exposure, the cringing while I wait for the blow, the sense of inadequacy and unworthiness, and that I’m letting down everyone who has ever had faith in me or supported me. That at the end, I’m going to disappoint, fail, not measure up, turn out to be shiny with wonderful ideas but empty and rotten on the inside. Imposter syndrome. Alone, we founder.

What am I doing? It’s a howl in my heart every day. When I wake to the sense of crushing pressure and remember I don’t have to do any of this, I’m not getting paid to, I could walk away from it all… When I remember I’ve chosen to run networks and a business and push myself, that I’ve built this edifice, this creation that is killing me is mine… I feel crazy and stupid and lost. When I sit in Art college, trying to remember if my art counts as art and why… I feel blasted by my own expectations. I had all the answers only yesterday…

I meet with good people for lunch. The time is worth it, I talk, rapidly, face burning, showing both my work and my bewilderment, trying to find somewhere in the world I fit… I feel like the world’s worst business person and entrepreneur, an artist who doesn’t sell art, a builder of networks who feels alone, a teller of stories of hope and direction who feels lost. They are kind and let me see not just their kindness but their sadness, and I remember the cost of wanting to make the world a better place, I remember the sense of loss that’s part of all our stories. Did we make a difference? Did we do enough? What am I doing? What the hell am I doing? There’s a cost. This is part of it, the shadow of the success, the cost of dreaming. This pain and bewilderment, this sense of being small and skinless. To dream of something better is a very vulnerable place to be.

I’m sitting in the mall and I should go home and get to work. The wind is cold and the sunlight is white gold and there’s a busker playing a sad song on an electric violin and I can’t see through my tears.

My Artbook: Mourning the Unborn

/ Sarah K Reece / Leave a comment

I have completed the Artbook I created after my miscarriage earlier this year. Inviting you to send in things to be cremated with Tamlorn was a deeply moving experience for me. Afterwards, it felt to me like the most natural, connected, public artwork imaginable, for such a private and taboo experience. I wanted to capture some of the sense of ritual and connection for others to use as inspiration in mourning their own losses. I’ve been distressed to be part of support groups and hear how isolated and hurting so many people are.

So I wrote and painted this book, hand bound it using coptic stitching, covered it with silk, and illustrated and embroidered it with velvet, silk, and seed pearls. The binding alone took me 8 hours to hand sew. It’s very precious to myself and Rose. Here are a few images from the book:

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The peach silk cover, chosen because of the peach tree we planted to remember Tam by.

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First pages

 

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I’ve gilded the print on the right with gold leaf

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To the left are some of the names of other unborn children people sent to me. On the right, three seed pearls have been sewn to the watercolour vial to represent the glass vial of tears we sent with the box to the crematorium.

 

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On the right, a silk ribbon embroidered rose has been stitched into the book.

Now that we are trying to conceive again, the time feels right to share it. I am currently talking with local services about an exhibition of this book and my other art about pregnancy and grief to raise awareness and help start conversations. I am also reaching out to other communities such as those affected by partner violence to create exhibitions that speak to their experiences also. My next big task is to reproduce it in a colour photo book edition so that I can share it with you.

Update April 2016: I have now completed this project! View my beautiful photobook of this artbook in my Etsy store.