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.
Sarah K Reece 